My Autoimmune Life

Where the heck have you been?

2011-09-27T21:13:00.000-04:00

So it's been what almost 4 years since my last post. In those 4 years I have received multiple e-mails from people with various questions about MS and my other illnesses. I have to admit I am very suprised people still read this ole thing after all these years.   I started this Blog years ago (I can't remember how far back) because I was having difficulty with my diagnosis of MS and I began reading someone elses blog and it helped me learn I CAN live a normal life with all this health crap. If reading his blog helped me maybe my venting can help someone else. I hope it has. I don't know. Worst case this venting helps me :)

So update on my conditions in order of least annoying to most annoying

1) Interstitial Cystitis - no flares in the last 4 years except one flare I think 3 years ago. I didn't have to go on meds just watched my diet for a few weeks and it went away.

2) Crohn's - just had my 4th or 5th colonoscopy a few months ago. All was well.   Dr said if I hadn't been previously diagnosed with Crohn's they would have never known I had it. I went in due to bleeding and pain which only ended up being an interal hemmorroid

3)Endometriosis - I still take birth control to control the growth.   Some months are more painful than others.   I just had my second baby 9 months ago and boy do I miss those period free months during pregnancy (that's ALL I miss about pregnancy)

4) Ahh yes good ole MS - well Ms. MS decided to rear her ugly head after my last child was born - go figure the odds are I would have an attack after giving birth and I did. For years my spinal lesion was erased from my MRI's - no signs of it's previous existance. Sans childbirth it came back and brought a friend. Now I have 2 lesions in my spine and they gave me new permanent symptoms - balance and dizziness. My doctor has been stressing his "concern" about the lesions in my spine and said more than once you can have 10+ lesions in the brain and no major issues but it only takes one or two in the spine to really disable you. That said he recommended I go back on an MS drug. I haven't been on an MS drug in what 5 years and back then I only took Avonex for 9 months (Hated it!).

So the research began - I narrowed it down to Copaxone or Tysabri. I went to the drug sponsored lectures to meet others on both drugs. I did research. I even looked up the odds of dying of things to put the risks of Tysabri into prospective. And the winner is.... Tysabri. I just had my first dose 3 weeks ago. Apparently I had an injection reaction (not alergic reaction) because I had a massive headache for 4 days after and was so exhausted. Next time I am supposed to be pre-medicated and I will ask they slow the drip to 2 hours - yes please please make me sit here in bordem longer doctor - there's nothing I like better than to see your overpaid nurses chat about their weekend plans and coupons.

Before during and after the infusion I kept asking myself am I making the right decision? I have 2 kids and a husband to worry about and my decisions affect them now and not just me. I still wonder if I made the right decision but there's no going back now. Its best not to stop Ty after you start - (I learned Ty is the cool kids way of saying tysabri).

Well I have to bid adu (I am a horrible speller and type way too fast to care)...work is calling

Oh my aching...

2008-02-20T11:32:00.002-05:00

Sinus, head, nose, teeth, gums, cheek,ear.

I caught my daughters cold and it turned into a sinus infeciton on my left lower sinus. It also caused major pain in my upper left teeth and gums. I planned on going to the dentist but then read that sinus infections can cause tooth pain. I have never had a sinus infection before to my knowledge but after reading all the symptoms I figured that's probably what I have. I went to the doc yesterday and got some antibiotics. So far my teeth and gums and everything else on my left side of my head hurt but I know it can take a few days for the meds to work. My left ear has some fluid causing some pain and of course the sinus cavity hurts along with my head in general.

Like many women about 90% of the time when I take antibiotics, I tend to get a yeast infection (gross I know) so I am anticipating that lovely thing to appear soon.

Found out a former client/co-worker was just diagnosed with MS. I gave her my cell so we can chat. I like reaching out to new MS'ers.

Life with a baby is definately different. No more hours of TV time just because. No more eating dinner together all the time. No more sleeping in on weekends if I want. Entertaining an infant is boring but now that she is becoming more of a baby it is more fun. However when you are sick nothing is fun but you have to do it. I swear we do a load of just baby laundry every 3 days. We empty the diaper pail every 3 days. We could make and clean bottles in our sleep. But she's just so darn cute it's all worth it oh and of course she is the smartest baby ever.

Let the sickness begin

2008-02-18T13:43:00.002-05:00

First week in daycare for my daughter = first illness. She got a cold which turned into a double ear infection and an eye infection (blocked tear duct). So I stayed home with her one day, my husband the next and my parents watched her for 2 days after that. She's now back in daycare although her cough isn't 100% gone. However they haven't said anything so I am assuming they don't care she has a cough. A few days after her cold started my husband got one and then I got it too. I hardly ever get sick because of my hyperactive immune system but go figure. Let the circle of sickness begin. Child passes to parent, parent passes to parent who passes to child etc.

Work is boring. They haven't assigned me my full customer workload yet. Still working out the details so they say.

Getting anxious for my MRI in april... I hope its clear

Got a study for IC that my local hospital asked me to participate in. Should I complete it if I don't have any IC symptoms for over a year?

Funny Local News
For those of you not up on D-town news (Detroit that is). The mayor was sued by 2 cops for wronfully firing them because they were investigating the mayor's activities such as parties and affairs. The Mayor said he did not fire them for that but rather demoted him and was not having an affair. The city settled for $8.9 million for the cops right after the jury came down with a guilty plea. Shortly there after some text messages were published showing he was in fact having an affair and also discussed the firing of one of the men (which he claimed was a demotion). So now the big scandle about town is what was behind that special quick settlement? Some settlement documents were made public but the mayor is taking his case now to the supreme court to keep some documents off limits. The mayor said the documents are personal and some of the statements or decisions in the settle ment were personal decisions. So if it is so personal then why do the taxpayers have to pay for his lawyers (over $.5 million) and why do they have to pay for his settlement? I don't pay city taxes but I do pay state taxes which in turn support city funding so in essence I am paying for this indirectly. This mayor is slimy. This is only one of many scandles in his path. I want Archer back. He was stong, smart and trustworthy. I heard he might run for govenor which I would appreciate. I wonder how far beyond the Michigan boarder this story has gone. Do other cities learn about how slimy and awful of a mayor we have here in D-town?

Back to the grind

2008-02-06T14:48:00.000-05:00

So I am offically back to work this week. Putting my baby in daycare was rough. My husband drops her off and I pick her up. I cried a bit the first day and of course called to check in the first day but the second and now the 3rd days are much better. On the good side I am able to use my brain again. When I was home with her I felt like a slug. Barely using any of my brainpower. Now I am more challenged which makes me feel better. Getting used to waking up this early again is hard. Luckily I can drink caffine again.

MS - tips of my fingers felt numb yesterday but I didn't say anything to anyone - even my husband. I have my next MRI in early April. I am crossing my fingers that it too is clean. Still get tingly legs when I walk too far or do stairs. I notice it more now I am at work and walking around more

Crohns - ok. Still in denial it is Crohns since I have diarrhea off an on for 8+ years and no IBS or chrons meds have stopped it at least not for more than a few days.

IC - no issues still yet

Endo - now here's the new problem. I started birth control again a few months ago (ortho tricycline low). However I don't think it is strong enough. I have been bleeding for 2 weeks each month. I am going to give it one more month (because they say you can have spotting for the first 3 months) and then if it doesn't stop I will call to go on a different pill. My cramps from endo are back. Guess the pregnancy didn't keep them at bay for long. Back to the heating pads and pills.

torti what?

2008-01-17T16:51:00.000-05:00

Torticollis. That is what my daughter has. My husband first noticed it a few weeks ago. I of course was in denial at first until he looked on the internet and found out it had a name. Congenital Muscular Torticollis. We booked an appointment with the pediatrician and she confirmed it. She referred us to physical therapy.

Torticollis is a condition where one side of the head tilts down toward the shoulder - like if you were to put your ear to your shoulder. Its due to either issues in the womb or damage to the muscle at birth. The doc seemed to think hers was acquired but when I look at old pics I see she had it all along with makes me believe it was congenital. Her condition is actually not that bad. I think the PT said she only had a 5% loss of motion. Doing certain neck exercises to stregthen and lengthen the shorter/wearker muscle should help correct it 100% esp since she is not that bad off. On top of that tort kids tend to get a bad flat spot (which she has) which causes them to need to wear the dreaded helmet. Doc says if her flat spot doesnt get better in 2 months or so she will need to wear the helmet. Yikes! How awful. Poor little girl. At first I blamed myself for the tort and flat spot but now I am starting to realize it's nothing I did wrong esp since it looks like she had it from the very begining.

I saw my neurologist today. Cleared to go back to work Feb 4th. Still no new MS symptoms. I have an MRI in april and my next appointment shortly there after. If that MRI is clean then it will be even better news. If not I will be going on Tysabri. Tysabri was just approved by the FDA for the treatment of Crohn's disease my doc told me. Therefore it will be a two for one deal for me.

I have been sweating like crazy since my daughters birth. It is normal after giving birth to sweat off the excess water but it is 3 months now and hasn't stopped. I saw my internal medicine doc and he said maybe it's TB or an internal infection. Did tests for both and nope. He said have you been having heartburn - I said nope- because at that point I didn't notice I was but now 2 weeks later I have been having non stop heartburn esp at night. That could be causing the awful night sweats. I read antidepressants can cause sweating but my doc said effexor doesn't - in fact sometimes they prescribe it to menopasal women to reduce sweating. However my neurologist today said absolutely effexor causes sweating. In fact he said its the number one reason he has to take people off the drug. Ah I finally got an answer. His answer is much better than my internal medicine doctor that said - well my dear I guess you are just a sweaty person. Funny how 2 docs have 2 different responses.

Endo is back. Cramps suck. In fact the endo on my colon is causing some painful bathroom trips. If I mention it to the OBGYN he blames it on the Crohns and when I mention it to the Gastro he blames it on the Endo. If it gets too unbearable I will request another laparascopic surgery and have both of them there along with a colorectal surgeon just to confirm my theory that it's the endo on the colon causing most of my pain and bathroom problems not the crohns. Crohns meds and IBS meds never help.

IC still gone...am I cured?!?

It will be hard going back to work. I have thought about quitting and staying home with my daughter but I will be giving up too much money and I think I will get board so I have decided to stay working. I can always change my mind later. I only have a few more weeks left with her full time before I go back. It will be spent going to physical therapy two times per week and mom getting a massage, facia and hair cut while grandma baby sits.

Holidays were good. It is different having a baby during christmas parties. I felt excluded because I had to go off in different rooms with my daughter to calm her down from all the noise and new faces. Inlaws came after the holidays and got to meet their grandaughter which was nice. Even my Bro-in-law visited. It was nice to see him because of my husbands 2 brothers he is the one I have seen the least and therefore know the least. I really got to know him better this time. He is a lot like my brother - very friendly.

Have 2 cousins weddings this year. Plan is to leave my husband home with the baby while I go with my sister. One is up north in March and the other is in Dallas in June. I am sort of looking forward to them since I don't have any other vacations planned so far.

I am back to my pre-pregnancy weight - sort of. My first month of pregnancy I lost 12lbs due to a diet so technically I am not back to that weight (still need to lose those 12 again) but I am going back on that diet this weekend and it should only take a month or so to lose it again.

The best news EVER

2007-11-30T11:39:00.001-05:00

1) My pap smear was normal. It is the first time it has been normal in years. I was afraid I would have to have another culposcopy and possibly cryosurgery again to remove the abnormal cells. I have also worried that I might eventually get cervical cancer eventhough tests showed I did not have one of the known strains of HPV that caused cervical cancer.

2) my MRI showed absolutely NOTHING. My old lesion doesn't even show up anymore. My doctor is now starting to think that maybe I am one of those lucky people that gets one major MS lesion and then nothing the rest of my life or maybe nothing for 10-20 years. He is also thinking maybe it was just tranverse myelitis but thinks it really somewhere in between TM and MS. He's looking at the big picture where my MS is in remission, my Crohns is in remission, my IC is gone or in remission and all 3 are inflamatory illnesses and maybe I just have some connecting underlying inflamatory illness and not necessarily all 3 diseases individually. He said studdies in NY show a small group of people diagnosed with MS have only one major lesion and then nothing ever again and thinks maybe I fall into that group. It has been just over 4 years since my first major lesion and at that time it was diagnosed as just transverse myelitis. My doctor downgraded it to ms because 1 mth after my first attack I was finally put on steriods. I got better. Then a month later I got worse again. My doc counts those as 2 separate attacks but of the same lesion. That's why he said it was MS and not just TM but now he is second guessing that but is more inclined to say it's MS and not just TM. Yes I have permant damage to my spinal cord but no atrophy to the cord or my brain.

What does this all mean. Pap smear to be redone in April. MS - my doctor recommended I don't go on any meds right now and then redo the MRI in February or March to see if there has been any change. If there will be any change these next 3-4 months will be the most likely time because I just gave birth and am suseptible for a flare. But at the same time if I am not likely to have another flare, why go on meds at all since I hate them. I go back in January since he wants to keep a close eye on me during this little experimental period.

What do I think of all this. Well the pap I am happy about. The MRI i am elated about but am nervous about not going on any preventative meds. However that is my decision to follow his recommendation. Of course I hate MS meds. Most people on the shots hate them I presume. I allowed myself to be excited for about 1 hr and then I went back to normal. There will alwasy be that underlying fear that something could happen any day. Just like breast cancer survivors still wonder if it will come back and when.

I am still getting anxious here and there. I think part of it is a lack of sleep (Scarlett was not sleeping well for 2 nights) and also because of boredom. Taking care of an infant all day is quite boring. Last night I took a sleeping pill and asked my husband to take the 3am shift so I could make up some good sleep. I feel much better today!

Nervous for MRI results

2007-11-26T11:39:00.000-05:00

I had an MRI on the 14th. I get my results on the 29th. I am nervous. My first MRI (well my first of my spine), showed a large lesion in my neck (I can't remember the exact C spot). A few years later my next MRI showed that lesion almost impossible to see but 2 new small lesions in my brain. At that time the doctor said he wasn't even sure they were due to MS since they were so small however months later when recapping our last visit he said and then you had those 2 MS lesions in your brain. Since then I have not had any new lesions show up on my MRI's. I have had MS for 4 years now. I think it's been 2 years since my last MRI. I hope it doesn't show anything new. I haven't had any new symptoms but still get my old permanent symptoms which can come on stronger at certain times.

I have decided I will go on Tysabri. I know the facts about those 3 people that got PML and don't feel I fall into the category they did in terms of taking other immunomodulating/immunosuppressive drugs at the same time so I don't feel I have the risk. My doctor says there have been no new cases of PML. Tysabri is used in the US and Europe. It was recently recommended for approval for Crohn's disease by the FDA committee and I have Crohn's disease so it will be a 2 for one treatment, however my Crohn's isn't that bad and therefore my gastro would not normally prescribe something like that for my Crohn's.

My little Scarlett is doing great. Getting bigger of course, starting to smile socially especially when she sees me after waking up. She now sleeps about 6 hours at night. Therefore the 3 bottles in the middle of the night have dropped down to 2. 3am and 6am and up for the day around 8am. Her grandma was visiting with us for the last 2 weeks. She just left today. It was nice because she did the 6am feeding so I only had to do the 3am feeding and could sleep in.

got to go feed her

Getting Better

2007-11-12T12:47:00.000-05:00

As of last Thursday I am finally starting to feel like myself. My anxiety is 99% gone. I don't think I have cried since Wednesday. Sleeping is better but I still take ambient at night and can't really fall asleep during the day while she is sleeping.

Scarlett is starting to smile at me which makes me fell like a million bucks. She eats every 2.5 to 3 hrs which is more often then "they" say bottle fed babys this age should be eating but the doctor says its ok. She's one month old now which is so suprising. It feels like just yesterday she was born. I guess these next 3 months before I go back to work will go by faster than I thought they would.

I have an MRI next week. I am very curious and partially nervous if it will show any disease progression. Part of me is still in denial I have MS. I think that denial will eventually go away if I ever have another major or obvious MS attack. My last MRI I think was 2 or 3 years ago. It didn't show anything until the dr compares it to my previous one and then you can see the residual effects of the original lesion in my spine and the 2 minor lesions on my brain. I hope the new MRI will show nothing again. I won't know until the end of the month because I don't have my dr appointment until then. During that appointment we will determine which drug I will go on. I need to find out if my insurace or my husbands insurance covers tysabri. If not then it will be an easy decision.

My Interstitial Cystitis has not come back. Pregnancy has been known to cure it. In fact my first urologist told me to get pregnant - and he was serious. I was 25 and unmarried.

I have had bowel problems since my delivery. Bad diarrhea. However it's finally starting to get better. I think the stress and anxiety brought it on.

I have my 6 week check-up with the gynocologist next week. I still have some strange pains down there every now and then. I don't know if it's my uterus, cervix, muscles or what. My episiotomy stitches are long gone but things will never feel or look the same down there. It's strange. Even my boobs have become mushy and saggy. I miss my old boobs. I know I have lost weight but have refused to weigh myself so I don't get upset. I still have that pooch of extra skin on my stomach and it's covered with streatch marks. How ugly. Long gone are my bikini days I guess. I will need to pick a birth control when I see my doctor. I used to be on Ortho Evra the patch. It was good but I would get sick the first day I put on a new patch (which made me belive I would get bad morning sickness if I ever got pregnant and sure enough I did). I will see what my doctor recommends. Key thing is it needs to be strong enough to keep the endometriosis at bay. Light dose pills don't work for me. I tend to bleed constantly with them.

I plan to start dieting in a few weeks. My mother in law will be in town tomrrow and will be staying with us for a few weeks so it's not a good time to start while she is here. I was on a diet just before I got pregnant and I lost 12lbs the first month (the 2nd month I found out I was pregnant so I stopped.. I hope to lose about 50lbs which I suggest will take about 6 months. So by June I hope to be just under the weight I was when I met my husband 4.5 years ago. Before I had MS and was depressed so I ate and ate. Before I was too tired to go to the gym.

Time to start thinking about christmas gifts for the family. Sometimes I am good at thinking of gift ideas for people but sometimes I can't think of a thing. I have no idea what to get my parents or my brother. I will leave the in-law ideas up to my husband since he knows them much better than I do.

Postpartum Depression

2007-11-07T12:44:00.000-05:00

I have postpartum depression. It took me a while to admit that might be what I have. I didn't want to be one of "those" people. I just thought it was the baby blues and it would go away but it has only gotten worse. I finally promised my husband I would call my psychologist and go see him. I did last week. He said its probably PPD and I need to go back on antidepressants (I have been off for over 18 months). He said to call my OBGYN which I did and they prescribed the antidepressants and a sleeping pill. Here's what has been happening that lead to this

Since I have been home from the hospital I have not been able to sleep. I know you dont get much sleep with a newborn but I am talking when I have time to sleep I cannot fall asleep no matter what. I tried over the counter sleeping pills, wine, lunesta etc and nothing worked. On top of that I have had no appetite and had barely eaten one meal per day. I have a headache 24/7 and am nauseaus off and on. Then there's the anxiety. I am anxious all day. Some parts of the day I am so anxious I have a full blown anxiety attack. I have never had an anxiety attack before. I cry so hard,I hyperventalate, curl up into the tightest fetal position I can, shake, sweat, hold my breath to make it all stop, I feel like I am going crazy and need to be put in an institution. It's the worst feeling ever. After it all stops I feel embarassed and stupid and scared it will happen again. I had a bad one Monday night when my husband got home. It was his first time seeing me have an anxiety attack. He was scared. He was afraid to leave me home alone with the baby this week. So far I haven't had one since but today is a very anxious day and I have a feeling I will have one before the end of the day. I try so hard all day long not to think about the anxiety because that just feeds into it. I try to take deep breaths and relax when I feel it coming on stronger. I try to keep busy with dishes, laundry etc to keep my mind off how anxious I am. However sometimes when you are all alone all day (well except with the baby of course) its hard not to go stir crazy and the anxiety gets worse. I just wish it would all go away. I wish antidepressants didn't take so long to kick in. I have only been on them 6 days and I know it can take 3-6 weeks to get the full effect. I have finally been able to get some sleep at night but it takes 2 lunesta or ambient to get me to fall asleep and then I am so groggy the next day so now I just take one at night but it takes awhile to fall asleep still. During the day I try to nap when she is sleeping but I can't fall asleep at all. It's so frustrating. This isn't fair. This is all harder than I thought it would be and having PPD doesn't make things any easier.

10-9-07 5:41am

2007-10-20T19:42:00.000-04:00

That is the time in which my beautiful baby girl was born. Scarlett Olivia. She was 8lbs 1oz and 20 inches long.

I started around 5:35am on Monday the 8th. My husband just left for work and I could not get back to sleep because my hips hurt so much. I rolled to my back and began to streatch my legs and felt a leaking of fluid. Did I just pee my pants? I got up and figured I best change my pants and underwear and maybe pee to get the rest out. No pee came out. Put on new underwear and before I could put on new pants more fluid leaked out. OK that can't be pee. Did my water break? I decided I wan't 100% sure so I put in a wad of toilet paper and walked around. Sure enough more fluid leaked out. Then I was about 75% sure my water broke. I called my husband and told him to turn around because my water just broke.

I decided to take a shower while he was in route back home. After that it was a flurry of packing things (I was all packed but he wasn't), getting the dog packed up so we could drop her off at my parents on the way to the hospital etc etc. My parents are 45 min away and the hospital another 25 minutes from their house. We arrived at the hospital around 8:20am. After about 1/2 hr the resident came in to do a test to be certain my water broke. 10 min later she came back and said yep it broke. She did an ultrasound to see how big the baby was. She said she was between 7 and 8 lbs. She then checked to see if I was effaced/thinned or dialated. I was 75% effaced and no dialiation. She said that's the worst type of labor - water breaking but not 100% effaced and not dialated. Great - thanks! I was then allowed to put on the lovely open backed hospital gown and asked to walk to the labor and delivery room (with my butt showing?!? - ok you can wrap this sheet around you the nurse said). The delivery room was ok. Nice size. I saw the little baby bed/warming table all set up. It started to sink in that this is real. This is it.

The monitor showed no contractions so the doc prescribed a pill for me to take to get me more thinned out. Contractions then started around 10am due to the pill. 3 hours later they decided since my contractions were too close together (every 2-3 minutes) they could not give me a second dose of the pill to thin me out so they started me on low dose pitocin. Fast forward may hours of painful contractions and complete boredom. They had me on constant IV drip so I had to pee every 45 minutes. I would roll on the birthing ball to try and help with the pain and boredom. I read a magazine, watched tv - but no rest. I could not sleep through these contractions. About 12 hours into my contractions I said I need pain relief. They finally decided to check again to see if I was more effaced or dialated (they don't check you often if your water broke for fear of infection to the baby). I was 90% effaced and 1cm dialated. That's it!! Are you kidding me!! After all these hours that's all I accomplished!! Oh my god I am going to be here for 2 more days! The nurse tried to assure me that I accomplished a lot and that thinning out can take a long time. They gave me a shot that was supposed to take the edge off the contractions but all it did was make me sleepy in between contractions. No pain reduction. About 3-4 hours later it wore off. I asked for another round. At least I was not stressed out in between contractions waiting for the next one even if it didn't reduce the pain. They checked me again and I was no further along. They gave me round 2 of the pain meds. About 3 hours later I couldn't take it any more. I begged for an epidural but he doc said no you are not dialated far enough. 1cm is not enough. About and hr later the nurse really felt bad for me so she talked to the doc and convinced her to give me an epidural. I have had a spinal tap so getting an epidural was a piece of cake. It didn't really hurt. The doc did an excellent job and it took only about 2 minutes for the whole process. All relief. I can now get some sleep. Doc checked me one more time right after the epidural and I was now 3cm dialated. Off to sleep I went. But wait 1.5 hrs later I awoke to contractions...these were different. Pressure contractions. They said they want you to feel them so you know when to push. I breathed through them for about 1 hr and then called the nurse. It was very painful. Nurse called the doc to examine me and I was 9cm dialated. Don't push they said. You need to wait until you are 10 cm. I tried and tried not to push. The urge was so strong. Sometimes I did push a bit because I couldn't help myself. About 1/2 hr later I couldn't not push anymore. I said I have to push and just started pushing. Nurse paged the docs to come in. And so the pushing began. 3 counts of 10 through each contraction. Boy was that tiring. Why 3 counts of 10 can't I just do 2 counts of 10. That last round of 10 is so hard to get out. After about 15 minutes or so of pushing I started asking how much longer. This is so tiring. Mind you I had been up for almost 23 hour straight with about a 1.5 hr nap. The nurse said first time moms push 1-3 hrs. Oh my god - I can't do this for 3 hours. More pushing ensued. I tried really hard to give them the "good" pushes they liked so much. They said that in the first 15 min I accomplished 1 hr of pushing. I was a pushing super hero I thought. But I was getting so tired. My eyes were shut through the whole thing. Eventually they said that's it the head is almost out. This might be your last push. Of course it wasn't. I was just getting to tired to give the good pushes. Ok one more round I went and her head poped out. After some suctioning they said to push slowly. I did and then pop she came out. It was such a relief. Oh I forgot to mention at one point I felt a sharp prick and realized they were numbing me for an episiotomy. I could care less I was so tired.

The baby came out and they placed her on my chest. Only then did I open my eyes to see curly dark brown hair. I was so tired I didn't know what to do and then I remembered watching the baby story and how they rub the baby so I started to rub her head with the blanket and the nurse shortly there after took her away. I laid there and dr meany started to push on me to get the placenta out. Back track to why I call her dr meany. My OB's office has 8 doctors. You are not necessarily going to be delivered by your doc but rather who ever is on call that day. I got to meet all the drs in advance and of all 8 I hated her. Just my luck she was on call from the time I called and woke her to tell her my water broke until 6am tuesday morning. Therefore since it was 5:41 when she was born dr meany had 19 min left to her shift so she was in a hury to get the placenta out and stitch me up. She was so rough with me. Pulling on the cord - pushing on my stomach. I was hollaring ouch - ugh - ouch and she didn't say a word. I read that the body will naturally contract to expell the placenta about 20 -30 min after delivery but she didn't want to wait. She asked me to push a few times and one time I did a bunch of blood came flying out and got all over her head to toe (and the floor) so my husband says (I was lying there with my eyes shut). Well eventually it came out and then she began the 1/2 hr of stitching - or so it felt like 1/2 hr. The whole time they were stitching me I was staring over at my baby girl who was getting weighed, cleaned etc while daddy watched. I was about 8 feet away and just wanted to see her but I couldn't. Finally after the stitching was done and baby was all cleaned and in daddy's arms he brought her over and I held her. She quieted as soon as she heard my voice. She was so beautiful. I have a beautiful baby. (I was mentally prepared for a not so beautiful baby - they aren't always beautiful you know). She is just so darn cute.

OK I have to go because Miss Scarlett is calling.

just a few days away

2007-10-01T09:49:00.000-04:00

I am due in less than 2 weeks. I am off work now. This is my first day off work. I am already feeling just a bit board. My big plans are to put clean sheets on the guest bed and fold out couch and maybe go to the book store to buy a book the peditrician recommended.

I don't think this baby will be coming early. I thought I was in pre-labor last week but all those symptoms stopped. Now I just have major hip pain which makes it very difficult to sleep at night. I still wake up to pee every 1-2 hours. At least now I can rest during the day off and on to make up for my lost sleep at night. I am also nauseaus off and on.

Last week the doctor thought I might be getting preeclampsia beause of my symptoms (although my blood pressure was normal) so he did some blood work but it all came back normal. I of course was then worried until I got the test results back. That's 2 things the doctor thought I had during this pregnancy that I did not end of having - maybe my health luck is getting better or maybe this baby is just lucky.

She's still quite active - you can see my belly move around easily. Sometimes her movements are quite painful.

I can't walk far these days without getting exhausted. We went to target and I was planning on using one of those electric carts but they didn't have any charged up so I had to walk which was very hard. I stopped in the furniture isle to rest and at the nursery display to rest on the glider.

My obgyn only put me off work for 6 weeks post delivery so my neurologist had to be the one to put me off work oct 1st. However he didn't fill out the paperwork in time so his assistant did on Friday and she didn't know what she was doing so it was all wrong and she didn't fill out the disability insurance papers. Now I have to call to get the doctor to do it and do it right. His assistant is new and I don't really think she is that bright esp compared to the previous one. I plan to be off work for about 4 months if all goes well. I hope that the disability insurance will cover me all 4 months. I know they only cover 6-8 weeks for childbirth recovery but the purpose of being off longer is because of MS. My permanent MS syptoms have gotten worse over the last couple of months. Dr suggested maybe doing steriods if I didn't take it easy and they kept getting worse so thats why I am off work now - to take it easy.

Monthly post

2007-09-18T20:19:00.000-04:00

So my posts have been downgraded from weekly to maybe monthly. I am just so busy and tired these days it's the last thing on my mind.

I have less than 1 month less until my due date. I just want to pop this baby out now. My body is so tired of being so big and so tired. I can't belive I still might get bigger. How do they expect pregnant women to survive in the last month? I have a co-worker who just laughs when she sees me and sings ..."memories...". I have less than 2 weeks left at work. I decided to start my maternity leave oct 1st. I am more excited about not working than having the baby right now. Work has been so stressful the last year I am suprised this baby survived. I plan to take at least 4 months off for maternity leave since I don't want to go back too early and have an MS flare. That is my biggest fear - I am way past due for a flare and post delivery you are at high risk for a flare.

I have an MRI scheduled 2 weeks after my delivery date and an appointment with the neurologist 2 weeks after that. Then we will decide which drug to go back on. I say rebif and he keeps pushing me towards tysabri. I am not 100% sold on Tysabri anymore. I was once but now not so sure I think because I will have a baby to care for soon - not just me.

IC update - I think I am cured. No issues really since I went off Elmiron (9 months before becoming pregnant) and no issues during pregnancy. They say pregnancy can cure IC. Let's hope

Crohns update - I have had diareahh off an on through out my entire pregnancy. Even with the extra iron pills. I am used to having it off an on the last 5 or more years so it really doesn't bother me. It doesn't come at bad times so it doesn't interrupt my life. Part of me is still in denial it is crohns. If it was crohns, how come every time I get a colonscopy the pathologist report says it's not currently active when I say how can it not be active I just had diareah for the lst 2 weeks straight.

Endometriosis update - saw a different OBGYN in my doctors office and he commented on how bad of a scar my previous doctor gave me for my Laparascopic surgery when they were diagnosing me with Endometriosis. He said you didn't get that here - we wouldn't have made that big of an incision. Gee thanks doc for making fun of my large scar. Well like IC, endometriosis is supposed to be better after birth. Lets hope so. I need to go back on birth control right after so that the lesions don't have any time to grow back.

Got out of Jury duty for the 2nd time this year. They would be fools not to excuse me

Getting a new car on Friday - Buick Lacross - yipee - anyone want to buy an 2001 olds intrigue?

Husband has friends coming to town this week from Fargo (we met in Fargo and I lived there for 1 year). Lets hope I don't go into labor while they are at the baseball and football games they are going to.

Well back to resting. That's all I have the energy for these days

no diabetes!

2007-08-09T12:33:00.000-04:00

I passed my 3 hr glucose tolerance test! I was so relieved. I had nightmares of no more ice cream, limiting my fruit intake and juice intake and bread intake. Luckily one less disease for me to take on. Pregnancy itself is like a crule disease until the end of course.

Have just over 9 weeks left. Ughh. I just want this over. I am so uncomfortable. I have to pee now every 1-2 hrs. The other night I even had to pee every 12 minutes for 2 hrs straight in the middle of the night. Needless to say I did not get much sleep that night. I couldn't quite understand why I had to pee that much that often. Luckily last night I was back to my every 1-2 hr routine. Even getting up that often means less sleep and less productive sleep for sure.

I am so tired. I have the MS fatigue. Then there's the Bowling ball stuffed in my abdomen fatigue due to the extra weight. Then add on the wholy crap I can't walk far without getting out of breath due to the excess blood fatigue. Don't forget the I get up and pee every 1-2 hrs at night fatigue. And of course there's the baby is pushing on my diaphram and lungs so I can't breath well fatigue. How about the oh my gosh my back hurts and my butt hurts from siatiaca fatigue. Add that to my so stressful job fatigue. Needless to say you combine all of these together and it is compounding the fatigue.

Here's my dilemma. I am someone who pushes and pushes past the discomfort and fatigue. I would only stop if I felt I was going to pass out. Like yesterday. I finally went home early after feeling like I would pass out about 3 times. I was so afraid I would actually pass out and no one would find me at one point that I said enough is enough. So when do I say I have enough of all this fatigue that I cannot work any more and need to take my leave now. Doctors will say it's up to me and to pay attention to how I feel and stop and rest and keep my feet up etc etc. Work will tell me one thing (oh don't push yourself, if you need to rest then rest) but then say the opposite the next minute - (when will this and that and that be done ). Why can't I just get a doctor to day on August X or Sept X you need to go on leave due to your MS and pregnancy. Why do I have to battle my internal demons and external influences to decide. The guilt is enormous. Guilty if I push myself too much and it affect my pregnancy. Guilty if I don't get my work done. Guilty if I wish something would go wrong so that I have to go on leave now. Guilty that I can't decide

One last thing - I got jury duty....AGAIN. This is the 2nd time in 3 months. Last time it was for federal jury duty and this time it is for county court. I have been summons for Sept 6. I still have to fill out the form and mail it back with a letter stating my issues and also pointing out that I just was called for Federal duty 2 months ago. I am assuming for sure I will be relieved but not sure if it will be temporary until after delivery or permanent due to MS fatigue

Long time no Blog

2007-07-27T12:08:00.000-04:00

I've been very busy at work and after work I am too tired to even think let alone use the computer much.

Baby/Pregnancy status - well I had some spotting a few weeks ago and I have been getting some braxton hicks contractions so the doctor told me to go to the hospital even though I didn't want to. Ended up being nothing. No issues on the ultrasound, no signs of labor, couldn't even tell where the blood came from. So 3 hrs later I went home.

Still having back pain but not close to as bad as before. Feeling dizzy which I thought might be due to low blood pressure but I found out I was anemic this week so now I take an extra iron pill on top of the iron in my pre-natal pill. Get bad charley horses in my legs at night, numbness in my hands/arms at night, swelling of my feet an ankles really bad, siatica pain in my butt and legs and hips, and of course fatigue - I am in my 3rd trimester now so it's definately getting harder to get around. The baby moves a ton - it's quite annoying when I am trying to sleep. Right now is the most active weeks usually for a baby - some kicks can really hurt.

Had my baby shower early since my mother in law and here sister were coming to town. It was really nice and I got more gifts than I expected. Now I still have to find where to store them all. There were a few major things I did not get that I will still have to go out and buy.

Baby's room is 95% complete just need to hang a few pics and such on the walls.

MS is same - fatigue fatigue fatigue - legs go numb easily since the pregnacy but now I can't walk far at all without getting too tired. Stairs are much harder - I take 3 breaks during a flight of stairs at work.
Crohns - usually you are constipated with pregnancy - I am no where close. Not even with the extra iron.
IC - I know pregnancy can cure IC - since I have been off my meds it's been 99% unnoticible so I think it might be cured after this pregnancy - we'll see
Endo - Early on in the pregnancy I think my endo adhesions caused cramping as my uterus and organs moved around - now I don't feel it.

Work - I am so sick of it right now. I have been having some issues with a co-worker that has a huge ego and gives major attitude. He's mean, condesending, yells etc. I told him I didn't appreciate the way he spoke to me etc etc. and I would not tolerate it anymore. I told my boss if he didn't change or was not fired I would quit. I almost did quit a few weeks ago - instead I just walked out and didn't come back the rest of the day. He hasn't blown up at me since but still gives attitude to me and the team.

Maternity leave - I wanted to stay working until 10 days before my due date. Considering how tired I am now I know I won't make it. My plan is to work from home part time in Sept and part time at work. August I may need to cut back my hrs from 7-8 per day to 6-7 per day. My doctors already give me a hard time that I am not following the 6hr/day rule as it is. After the baby is born I plan to take off 14-16 weeks due to the increased risk in an MS flare within the first 3 months. I don't want to go back right when my risk of flare is highest so I will take a few extra weeks just to be safe. Plus I am sure my MS fatigue will really kick in on top of baby issue fatigue after delivery. I might get it covered under disability insurance due to MS or might not. I dont' care either way as long as I can have the extra time. There is a 40% chance of an MS flare after birth. I'm not taking any risks

I will be going back on MS drugs 3 weeks after delivery. Not avonex again. I didn't like the side effects of feeling like crap for 1.5 days after the shot. I don't want Tysabri yet - want to see more long term data now. Doc then recommended Rebif - so I will try that. If I get the same side effects as avonex then I will switch to copaxone later. Going from 1 shot a week to 3 will be tough. I don't care that it's a smaller needle because really length doesn't matter since your nerves are on the skin surface only. It's now I have to remember I have MS 3 times a week instead of once. Since being off my meds I can go for weeks not thinking about having MS.

Getting a new car soon - I need to clean up the one I got. The plan was to buy a new one before the baby is born. I just need to get my act together. Going for a Buick Lacross since it's similar to what I already have. No SUVs or minivans for me - thank you. I like my sedans - roomy and good milage and not typical of a mom.

Last bit of news - I falied my Glucose tolerance test - its a test to see if you have gestational diabetes. I have to take another glucose tolerance test but this time I have to eat a special diet for 3 days (today is day 1) and then go in on Monday have my blood drawn, drink some glucose, wait one hour and have my blood drawn again, wait another hour and have it drawn again and wait another hour and have it drawn again. If I fail this test then I am deemed to have gestational diabetes. My thought is since I have such bad luck in health I will probably have it so I have been eating tons of sugar up until today to make up for what I will miss the rest of my pregnancy. I should know by mid-late next week if I have it or not. I hope not but think I will.

car back and exempt

2007-06-13T12:30:00.000-04:00

Got my car back finally. Looks ok. Inside the trunk you can see where they added on the new side panel sort of sloppy. Got exempt from Jury duty - Yes!!

I have to fly to LA next week for work. I haven't traveled for work in over a year I think. I really don't want to go but know I have to. The worst part is the return flight doesn't land until 1am. That will be a long day. Hopefully I can sleep in the plane. I used to be able to when I traveled between MI and Mexico for a year.

Speaking of sleep - I am at the point in the pregnancy when good sleep is impossible to get. I get about 2 hours and then wake up and have to pee and have a hard time falling back asleep. I am not supposed to sleep on my back but that is my favorite position. Sleeping on my side eventually hurts my hips. Ughh. So I may go to bed at 10 and wake up at 7am but I get about 6 hrs of total sleep due to waking up all the time and not being comfortable. Believe me I have tried sleeping alone, sleeping with tons of pillows in various locations but nothing helps. 18 more weeks of this crap.

I watch the baby story on TLC to get an understanding of what happens to people during delivery etc but I hate seeing those women that say they love being pregnant or had a great pregnancy. Why couldn't I have that luck? Oh yeah that's right I am not lucky in general. My husband laughs every time one of those women pop on the screen.

I see my neurologist in a few weeks. I haven't seen him in 4 months. I have to start talking to him about what CRAB-T drug I will go on after giving birth. He will want me to go on Tysabri. Before I didn't have an issue with going on Tysabri. I read all the medical data that was submitted to the FDA for the re-approval process. I know there's a 1/1000 chance of getting PML but I also know the curcumstances behind those 3 people that got it so I don't believe the true percentage for me would be even close to 1/1000. I am curious what the latests stats say from the TOUCH study. What would my next option be? I don't want to go on avonex again - made me too tired for 2+ days and headaches and achy and just basically lost about 2 days a week due to it. I was on it for almost a year. My friend who is a neuro recommends copaxone the most. With my multiple illnesses Tysabri is the best choice (it is being studdied on Crohns patients). Avonex would be my dr's 2nd choice. I wonder what his 3rd choice would be. I will have to ask.

I will also have to talk to him about possibly needing more time off than the usual 12 weeks you get from FMLA. If I have to go on bed rest before I am due, I will still want 12 weeks off after delivery to recover and avoid adding the stress from work back into my life too soon. My fear is I will stress out from having a new born and having a stressful job that I will get a major MS flare like 3-4 months after delivery right after going back to work.

Bad luck

2007-06-08T12:33:00.001-04:00

I have bad luck - in health for sure but now in other things based on the last couple of weeks

1) I was on my way to see my dying grandfather. My husband and I both took the day off to go see him. We were 2 miles from home and had a about 150 more to go. Then this 18 year old kid ran a red light and hit us. Smack in the back rear of the car. I was reading at the time and my husband was driving. We were turning left and the kid was going straight - straight into the side of our car. I heard his breaks squealing and I looked up in time to see him coming straight at the side of our car towards my husband's door. At the last second the kid turned his wheel away and ended up hitting the rear drivers side door, panel and bumper. The impact was in slow motion and it was not hard enough to deploy the air bags but hard enough to spin our car just a little. I got out of the car and started crying and yelling at the kid - I told him "thanks a lot - I'm on my way to see my dying grandfather and now you just ruined my chances of seeing him - and I am pregnant". I bawled and sat on the ground by a electrical pole. People ran up to us asking if I was ok. I said yes but I am pregnant and am very upset about the whole day because we were going to see my grandpa who is dying so I am very emotional today. Cops came and saw I was pregnant and called the perimedics. Fire and ambulance came. The took me into the ambulance to check me out. My blood pressure was high but other than that I didn't think I was hurt. My seatbelt didn't even tighten up in the crash. They tried to get me to go to the hospital but I said no. I signed a waiver and they left. Cop gave the kid a ticket and we went home. I called my dr's office and they said are you crazy - you need to go to the hospital no mater how low of an impact it was. So off we went to the hospital - about 45min away. We were there the rest of the day. They hooked me up to monitors to make sure I wasn't contracting. They did an ultrasound and everythign looked ok so they sent me home. By the time we left I was starving. The accident happened at 9am and we left the hospital around 4pm and didn't get to eat anything in between. That was the friday before memorial day
2) The saturday before memorial day I decided not to go visit my grandpa because I was too afraid to be in a car and my grandma didn't want me to see him in the state he was in that day so I didn't go. Then he died memorial day. I didn't find out until the next day at work that he died the day before because we were all busy that night at a bar-b-q at my house that night.
3) I was hoping they would total out my car and give me a check because I planned on buying a new car next month anyway and it had over 100k miles. Nope - repairs costed about $3000 where the car is probably only worth about $4500. It's been 2 weeks now since the accident and I still don't have my car back. I plan to pick it up today.
4) Jury duty - I find out after 6pm tonight if I got a medical exemption from having to show up for jury duty. 5 hrs 50 min and counting before I can call.

Pregnancy ok - now get leg cramps and all sorts of aches and pains (she kicks harder now). Plus I have diareaha almost every day which is strange. I still have bad back pains and headaches. I was very tired this week - more so since this pregnancy started - not sure why - maybe it's the heat.

Plan to paint the baby's room this weekend and getting a massage and pedicure. 4 more months to go.

It's a girl! Grandpa and Jury duty

2007-05-20T15:38:00.000-04:00

I just found out 3 days ago I am having a girl. I almost teared up when the tech told us. Ultrasound images are amazing. You can see all the bones, all 10 fingers and 10 toes, the heart with its valves opening and closing, the brain - hand opening and closing. It was awesome. It makes this all seem more real to me right now. I also found out my birth defect screening tests came back good which was a relief. I have such bad luck when it comes to drs tests and my heath that I thought my baby would too.

Then later that night I learned my grandpa is dying...he's been dying for years now. They gave him 3 months to live 2 years ago and he just kept on going. He has had hospice care for the last 2 years but now he is showing stronger signs of being near death. I was so upset I could barely sleep. I saw him 2 weeks prior and he seemed stronger than he did 3 months ago. I was afraid he only had hours or days to live based on what everyone was saying so I didn't go to work on friday and instead I went to see him (2hrs away). All my aunts and uncles were there and most of my cousins. We all knew this might be the last day he was alive. He was mostly sleeping, not eating, but he did know what you were saying and did respond the best he could to what you were saying. Sometimes he was speaking strange things and was confused about the date/year. He did recoginize I was having a girl and he kept saying Carrie's daughter, Carrie's daughter over and over. That was bitter sweet. Yesterday I learned he was doing better. The man is like the energizer bunny - he just keeps going and going. He was talking more yesterday but still not really eating. It will be really sad if he passes but it will be easier on my grandmother. The reason he went down hill was because my grandma, who takes care of him, fell and broke her leg by her hip and had to have surgery to add a rod, pins, screws etc. She had to go to a nursing home for daily physical therapy and so we decided my grandpa would go with her until she got better enough to take care of herself at home. Well he hated it there and after less than 3 days they brought him home and hired 24hr help. I guess all that stress took a toll on his body and he won't make it much longer. Probably less than a week I imagine. When he passes there will be no funeral or service. He will be creamated and burried in Arlington National Cemetery but not until my grandma dies which will be a few years I hope.

Pregnancy is getting easier - no more puking but I have constant back pain. All day and it gets worse through out the day to the point I walk like an old lady at night and don't like to move. I bet this pain will be here for the next 5 months until the baby is born....sucks!

Work still sucks - crazy busy. I have thought of quitting quite often over the last 4 months. It would be hard to give up the $$ and to know I could never get another job that pays me full tme and gives me full benefits even though I don't work full time. Although lately I have been putting in 8 hrs a day or more which has been hard on my body. I am a slug no a worm after work. I just lie there and maybe slither to the bathroom every hour until bed time.

I got jury duty. Not couny jury duty, not state jury duty - FEDERAL court jury duty. You know what kinds of cases they have at federal court - company A suing company B or someone who commits a federal offence. I can only imagine how long those cases are. I am waiting for my dotor to send me a note that I can send to the court clerk confirming my MS and pregnancy and my shortened work week. My neuro said they usually don't excuse you for MS now since new ADA laws require them to accomodate your MS rather than excusing you. Rats! The court house is almost 2 hours away but they don't pay for a hotel room unless you live further away. Unlike county jury duty, I will be on call for 4 weeks. I have to call in each night for 4 weeks to see if I have to come in the next day. What a pain. It starts in a few weeks. I hope I get excused and if not I hope I don't get selected.

I hate being pregnant

2007-04-14T17:38:00.000-04:00

I don't like pregnancy. At all. I don't understand why so many people just think its so great. What's so great about it? I can adopt and have the same outcome in my mind. I don't care if my child is genetically mine (my genes are bad luck in the health dept). I am only 3 months along and am sick of it. I wish someone else would carry this alien for me. I am so very tired every day all day. Walking makes me loose my breath. Stairs suck even more. I look like I just ran a race when I walk from one meeting to the next at work - panting, sweating, tired. Then there's the back pain - every day almost all day. Oh and the almost daily headaches. You would think I was just having a bad MS flare but this is supposed to be a gift!?! What's the appeal? My nausea has died down from 24 hrs a day to about 4. Puking about once every 2-3 days. Appetite is better but still not good.

I wished I was a boy when I was a child and now I really wish I was. Not that I feel like a man or anything like that its just these unique female things I can do without - periods, boobs, pregnancy.

I have to go to my sisters soon for my brother in laws birthday - I don't want to go because I don't want people asking me about the pregnancy with excitement and have to act like I too am excited. I'm not. I want someone else to take it off my hands and just hand it back in 6 months. I wish it was just an egg I could put in an incubator.

I deal with MS symptoms, Crohns symptoms, IC symptoms and endometriosis symptoms on a daily basis. I feel like pregancy is just another illness added to the list there to make me uncomfortable and to make my life even more challenging.

I'm in my 2nd trimester (barely) and they say the 2nd trimester is the best -great -this is as good as it gets!?!

I go to work and barely make it. My job is very stressfull now. I work probably 8 hrs a day now when I am only supposed to be doing 6 but I don't have enough time to get my stuff done and micromanage everyone else. When I come home I am glued to the couch. I don't cook -I only get up to pee. My husband usually brings me my dinner and then I stay there until I go to bed which is 8 or 9 pm most nights or 10 on a good night. On weekends I just lay in bed or lay on the couch. I maybe do one thing like grocery shop or shop for clothes but that's it - it wears me out to easily and I need to catch up on all the rest I lost during the week. I hate this routine. I pray I don't get ordered on bed rest or I will go insane.

Is it pre-pardom depression or am I just a little more jaded than the average female because of my bad health luck in general.

Have I said how much I hate pregnancy?

2007-03-26T13:27:00.000-04:00

My pregnancy still sucks. I puke about once per day or every other day. I am nauseaus all day and have no appetite most days so I eat what ever sounds good at the time. The back pain still sucks and then don't forget the shortness of breath and peeing often

Now I can add dizziness and light headedness to the list as of this weekend. Typical of 2nd trimester but I am just finishing my first.

New MS symotom - numbness/weakness in my left arm from my shoulder to my elbow. I have never had any problems with my left arm so this concerns me. I first told myself I will wait a few days and if it doesn't go away I will call my neurologist. Well it's been a week and I still don't want to call him. What will he say/do - either he will tell me its a psudo exacerbation due to fatigue and stress or he will tell me it could be a flare and to take steroids. I don't want to take steroids and I can't really get rid of the stress/fatigue unless I cut my work hours which I can't afford to do now....esp since they know I am pregnant...I want to prove I can handle it.

Then I got some bad news today from my gyno. My pap smear I had 2 weeks ago came back abnormal....again. This means I have to have another culposcopy again. It is scheduled for 2 weeks from today. I am afraid it might cause a miscarriage. The nurse said it won't. I need to do research on this. A culposcopy is when they look at your cervix through a scope and take a biopsy for further testing to rule out cervical cancer. My previous one was painful for an hr or 2 after and that was after I took a bunch of advil. Now I can only take regular strength tylenol which I know won't help so it will be pretty painful this time. Lots of bad bad cramps and bleeding for days. I am scared.

MS walk - I am doing the MS walk in Birmingham Michigan this year - May 5th. Me and my team. This year my team has grown much bigger. My boss and her husband will join us. So will a friend of hers. I also signed up to be a power partner. I got the name and address of my partner on Friday. I have to send her notes and cards and such. She will do the walk for me. How cool is that...someone walking in your honor that doesn't even know you. She and I share the same name too.

Pregnancy still sucks

2007-03-16T12:25:00.000-04:00

Now I am 9 weeks and 5 days pregnant. My doc changed my expected due date from 10/7 to 10/14 but I still know it should be 10/15. I am still puking on a regular basis. I gag many many times through out the day. I have learned the art of gagging silently. My worst day was last wednesday when I was in training at work all day and had to puke each break we got. I made it through the day but kept puking when I got home. The next day I was in training again but I was so exhausted from all the puking that when I ended up puking again I said that's it and I went home to sleep. Now I puke about once per day - usually at night. I hold back all day from puking but can't hold back as well at night. My doctor scolded me for not calling him that day that I puked a lot. I told him next time I will. I have lost 2lbs in the last month from this sickness. I have no desires to eat and most foods don't sound good - some make me puke just thinking about them. I try to eat what ever I feel like when I feel like eating. My doc said that's what I should do too. I probably have another 3 more weeks of this hell. I have nick named the baby damian - cause it must be the devils child that's causing me this much pain and sickness.

Besides the puking - the back-pain I am getting used to. Using a heating pad on low helps at night. Then theres the ever growing sore boobs - I need to go buy more bras now. I hate those things. Why are humans the only mammals that have engorged boobs all the time? Then there's the shortness of breath. I guess because of the extra blood in my system now my veins have streatched making it take longer for blood to flow back to the heart and lungs so I get short winded quite frequently as my heart pumps harder and faster to get the blood back up.

My MS symptoms are worse - way more tired than usual but I try to keep up at work and just collapse after work. Walking is harder and slower. Stairs are much harder now. My legs tingle and go numb much easier now. sometimes my right hand/arm goes numb too. I still get jumps and jolts but not much really.

So I am trying to think more positive by looking for a crib and picking names I like. I went into a baby store the other day and was freaked out so I just wandered and then left. I don't feel like I should be buying anything for the baby yet - its not that real yet to me.

I have genetic and birth defect screening in a couple of months. Blood work and an ultrasound is all they need to do these days. No amnio or CVS - unless of course the blood work or ultrasound comes back showing something - then they recommend the amnio.

I might start looking for maternity clothes this weekend. Eventhough the baby and uterus is still small enough to fit in the pelvis, it will pop out soon. I already noticed that my lower abdomen fat has pushed up to my upper abdomen - its strange. My clothes fit fine but in about 4-6 weeks they might start getting snug. Oh darn - clothes shopping is required.

Pregnancy sucks!

2007-03-02T12:27:00.000-05:00

Its been just over a month since my last post. I have held off posting because I didn't tell my extended family yet that I am pregnant. I still haven't told them yet but I think I will after next week. I am 7 weeks and 4 days pregnant. My due date is October 15th. Let me just say I hate pregnancy! I have been so sick all day every day. Throwing up about once per day. Have no desires to eat lately. Just so sick its hard to make it at work. If I hear another person or read another book that tells me to eat crakers and 6 small meals a day I will throw the crackers in their face. Trust me I have tried that. In fact I was eating 6+ times a day before all this happened and the sickness deters me from eating. and if I do eat it doesn't stay down.

Besides the nausea and puking my lower back hurts - all day - and is so bad at night I find it hard to go to sleep. Then there's the expanding boobs that kill. Even bumps in the road while driving make the pain worse. At this point I wonder if its worth it. I know I won't doubt it will be worth it later but right now I do. This sucks. Why don't people tell you how bad it can suck. I never expected to be this sick and this sick all day. I expected to be extra tired which I am but add in the chronic nausea and it's hard to work. Top it all off that work is very stressful right now and this just sucks!

so busy so stressed

2007-02-01T11:44:00.000-05:00

I have been so busy at work and the stress has been killing me to the point I almost quit last week. I threatened to do so in an e-mail I sent to my bosses late one night while working from home. I have had a ton of work to do but not enough time in the day to do it. In the past I would have just worked over time to get it done but I don't have that capability any more so it stresses me out even further. Stress makes me even more tired than normal which makes it harder for me to work extra hours - vicious cycle. Good new is my spasticity is about 90% gone. I don't have it most days but when I do it is only just slightly painful.

Baby front - don't know if I am pregnant or not yet this month. I will know by Tuesday. If I am not pregnant (which I don't think I will be) then I have to see my gyno so I can start taking Clomid (fertility drug) next month. Next month will be month #10 of trying. From what I read Clomid is only worth trying for 3-6 month top. After that if it doesn't work its not going to work for you. So lets say I try it for 6 months and no luck - that brings me to August - what do I do in August - here are my thoughts - step 2 could be invitro but I don't think it's worth the money and stress. I don't care if my baby is genetically mine and neither does my husband (or so he says) so I don't think I want the stress of invitro and the feeling of absolute failure if it doesn't work. I spoke to a co-worker who did it 3 times and failed 3 times. She wished she never did it. It's so painful to deal with when it doesn't work. My doctor doesn't want me to try a fertility drug any stronger than Clomid because of the higher risk of multiple pregnancy and my body cannot handle a multiple pregnancy. So whats my next option? Adoption

Here's what I have learned about adoption - most countries do not adopt to famlilies where one parent has a chronic illness. (Russia, Poland, Hungary, China, Korea all won't adopt to me) about the only country that will is Guatemala. However there is a law coming into effect later this year that will forbid adoptions from Guatemala. Just my luck. So what now!?! I guess I better look into that law to see the cut off time so I know when I have to decide if I am ready to go down the adoption road or not.

Stress = MS flare

2007-01-06T21:56:00.000-05:00

Work has been hectic with my new customer launching product. Lots more hours than normal which was killing me just before x-mas. Inlaw visit went well. No major stresses there. Went to the detroit institute of arts, science center, shopping, pistons game etc to enterain them. Just before new years I started getting really tired. Slept a lot after the in laws left. New years eve I stayed home as I was really really tired for some reason. Relized it was my period (darn not pregnant once again - thats month 8 now - moving to month 9 of trying).

Luckily I was off of work the 22 through the 2nd so I got a lot of time to rest. However by January 3rd my MS came to haunt me. It started with my back going completely numb that morning at work. Not just tingly but rather can't feel a thing on my back numb. By that afernoon the spasticity hit. Ughh. Not spasticity!!! Last year this time I was having a spasticity attack. It lasted Dec 2005 through March 2006 but was non existant for about 2-3 weeks in Feb 2006. Now it's back. Just as awful as I remember it. Spasticity is like a chronic muscle cramp. For me its in my lower back below my waist. It hurts like hell esp by early afternoon and is down right miserable in the evening. I can't sleep. I can't walk. I can't do anything it just hurts. Nothing helps. I hate MS. I HATE YOU MS DO YOU HEAR ME!! Its just not fair. Why do people have to deal with such diseases. Why do I have to deal with it.

I have been toughing it out at work. I don't like to be a complainer at work and I usually keep it to myself most days. I am really busy at work so at least that helps keep my mind off it. I actually worked from home on the 4th (happy birthday to me) because I had a repair guy coming to fix my dishwasher. I know everyone at work knows I have MS but I don't think they really think I have MS. I guess I don't want them to think about it most days but when I am in such awful pain all day I wish those around me could feel what I deal with every day for like 15 minutes so they could know how strong I have to be to go forward with life and deal with this pain without being a big compainer. People have no clue how hard it can be to deal with the symptoms of MS. Heck before my many illness I was blissfully happy not to know...of course I didn't realize I was happy not knowing until I knew and then I wanted to go back to not knowing.

MS flares take me back to the phase when I am depressed I have MS. I hate what it has done to my life. I can't work full time so I can't get promoted so I am stuck at my job for the rest of my life. I can't exercise much so I have gained a lot of weight in the last 3 years. I eat like crap because MS depresses me so I gained a lot of weight. I can't go out most nights because work takes away all my energy during the week and on weekends I have to limit my activity to one major thing per day. Either I do something during the day or at night but not both. I don't have energy for both. That means I dont get to go out with friends much because on weekends I usually have stuff I need to do around the house which takes up my energy because I don't get it done during the week. MS makes me feel ugly. MS makes me feel like less of a person. Less then who I wanted to be.

There are good things to having MS. I appreciate little things more. I KNOW what it means to be strong. I know what it means to be stubborn. I know what it means to be a fighter. I know what it means to accomplish things. I know what it means to overcome depression. I know what it means to be a fundraiser and the sense of accomplishment it brings. I know what it means to have someone love you for you despite your illnesses. I know what it means to be appreciated at work when you feel like to don't deserve it. I know what it means to be discriminated against and therefore won't return it. I know what it means to be able to walk, work, see, and live.

I've been pretty down since this spasticity started. I even skipped my shrink appointment because he will say "see this is why I told you to take it easy these last few weeks....you brought it on yourself. Now you are going to get depressed and frustrated again". So why go if I know what he will say. Yes flares make me depressed. So what. I think thats normal. Am I supposed to be happy I have a flare of my MS? Indiferent?

I didn't want to take any meds for the pain because I am trying to get pregnant but I gave in today. I took baclofen. It helped for like 1 hr or 2 and then nothing. I can't take it again until tonight. If this continues through the middle or end of next week I will call my doctor. He might recommend steroid treatments but I don't want to deal with that either right now. 3 days of IV steroids just will make me sicker and not able to try and get pregnant. However you shouldn't try and get pregnant if you are having a flare. Ughh Such like MS to interrupt my life plans.

Pregnancy plan - saw my gyno -he said to chart my basal body temp for one month and have sex every other day for 2 weeks and if I am not pregnant by the end of the month then come in and he will start me on clomid - fertilty drug. I figure I am ready for that next step. It has been 8 months now going on 9. I still don't think I will get pregnant because of my endometriosis. Speaking of the endo - that too has been flaring up bad. Bad cramps for days/weeks before my period. Even cramps after my period. Takes me back to just before my diagnosis of Endo. Will I need laparascopic surgery soon to remove it? I am starting to think so. If I do it might increase my chances of getting pregnant.

Well back to reality now. Maybe baclofen and wine will help me tonight.

x-mas = x-tra stress

2006-12-10T11:17:00.000-05:00

I am a stresser. I stress about everything. Being 5 minutes late, having a bad hair day, having company over etc. Work right now is very stressful for me. It's making me very tired all the time. Add that to the 50 gifts I have to buy for x-mas and the fact that my in-laws are visiting for a week during x-mas and I am a wreck.

I have managed to dwindle down the gift list to only a few more left to buy. Work I try to only
take one day at a time and not freak out about the days to come and amount of work I still have to do. As far as the family gathering goes, I haven't got my arms around that yet.

I can handle the stress of having 4 chronic illnesses pretty well these days but the day to day stress sometimes takes its toll on me. I got a flat tire on the way to work the other day, eventhough I can change my own tire just fine, it stressed me out to the point I started crying.
I do think I am much better at dealing with lifes little challenges since I have had MS but now that I do have MS stress is more of an evil than it ever was. I used to thrive on stress especially the work stress. Now it makes me sick and tired.

At work I decided to go off FMLA and ask that they consider my shortened work we under the American with Disabilities act (ADA). Under the ADA your employer has to agree to a "reasonable" accomodation to allow you to continue to work with your disability. My disability is my fatigue- my inablity to function as long as the average person. I need more rest. Having a shortened work week (less than 40 hrs) is a well published reasonable accomodation. The challenge is I don't think my work considers me legally disabled. They were supposed to have a meeting on it Friday to decide if they will comply with my request. The reasons I want to drop FMLA and fall under the ADA is:
1) FMLA requires me and my doctors to fill out paperwork every 6 months saying - yep I have MS and yep I still need to work less than 8 hrs a day. Such as pain
2) If I do ever get pregnant I want to take 12 or more weeks off. The law that forces your employer to give you those 12 weeks is FMLA. If I use those 12 weeks or 480 hrs up on my MS then I won't be allowed 12 weeks after birth. Going off it now allows me to save those 12 weeks for a child.
2) If my work acknowledges NOW that I legally fall under the ADA then if something happens in the future with my health that affect my job status - They have to take into consideration the ADA laws before making any changes. 3 years ago when I filed for FMLA they changed my job and I told them that was illegal under the ADA. They said they weren't considering me qualifying under the ADA. When I asked why they said because my condition wasn't necessarily permanent. Mind you that was before I was diagnosed officially with MS but rather diagnosed with transverse myelitis. TM can heal 100% but only 33% of the time.

So there's a lot of logic to my request but I can't tell them about #2 or #3 so I tell them its because of #1 which sounds weak. I fear they will reject my request stating they don't consider me disabled and I will once again have to do a lot of research to prove my point further tainting my relationship with my employer. I don't want to be that employee who throws the law in their face causing a sour taste in their mouth but I don't want to be treated any less than I deserve. I know I am valued at work. I had 2 managers fighting for me when it was decided my current customer account would transfer out. I just hope they take that into consideration when deciding on my proposal.

Lions and Family disfunction

2006-11-14T10:21:00.000-05:00

Watched the loions lose a game and win a game. We have 1/2 a season's tickets. I will be at the thanksgiving game so look for me on TV. They aren't that fun to watch. Not sure why my husband wanted season tickets.

My grandma's funeral is Thursday. Its so late because my parents acutally had a vacation planned and she died the day before they were going to leave. There's a long story about my grandparents and faking illness the day before we leave on a family vacation so my dad was not about to delay yet another trip due to my grandparents so they went anway. She was already creamated we just are having the burial service. My uncle from Tx is coming in town...I'm not looking forward to seeing him

Here's the thing about my uncle - he cheated on my aunt for like a year with a co-worker. My aunt only found out because when my grandpa died he was traveling for "work" and when my aunt called his secretary to find out where he was she said he's on vacation not at work. Come to find out he was on vacation with his mistress. That was the end of that marriage but like anyone who has been in a relationship for a long time my aunt was willing to give him a chance but he screwed it up by still talking to the other woman so that was the official end. I never forgave him for that. He has since married the mistress but even after they were married he begged my aunt to get back with him. I just don't like him for what he did and for his lack of morals and values. Thats one reason I don't want to see him. The other is after oh about 32 years he all of a sudden wants to be a family. We never see him, never talk to him or at least I don't. All of a sudden he wants to have this family runioun at his house in texas next spring. I don't want to go. Why all of a sudden does he want to act like we are all a family? My dad's side of the family doesn't get together often (once every few years) they live all over. Why now does he care to see everyone? We had a get together last summer at my sisters house and a lot of my dad's family was there. My uncle was in town but decided not to come because he was in a fight with his wife. Well there was his chance to see us and he gave it up because he was in a bad mood. Well if he cant tough it up and drive 5 miles even if he's in a bad mood to see us then I don't think I need to fly 500 miles to see him.

Sad story a child I know. She was diagnose with Precocious puberty. Which means at 5 years old her body has already started puberty. This is bad for many reasons one of which means she will grow really fast and then just stop way before most kids and therefore will end up shorter than she was destined to be. Also it means she could start her period in like 2-3 years at the age of 7 or 8 which causes many social issues. The good news is there is a way to treat it. First they have to determine the cause. In most cases a cause is not determine and they give them monthly injections of a GRnH antagonist like Lupron or Depro Provera. There is also a nasal spray version.

Death and Jury Duty

2006-11-07T15:33:00.000-05:00

My grandma died yesterday. She was my dad's mom. I wasn't very close to her. In fact I barely spoke to her in the last 7 years I would say. We had sort of a falling out related to her bashing my mom and dad and such. My dad still visited her every Sunday over the years and handled her finances etc. At first I was not sad. To me she died when our relationship died. But then last night and today I began thinking about when I was younger and all the grandma'isms - you know the quirky things only that grandma did like she usually wrapped presents in tissue and not wrapping paper. When she babysat us she would keep us busy by making paper dolls from Sears catalogs. She always sent a card on each holiday with a $1 bill inside even when I was in my 20's. I also got sad thinking about my dad and what he is probably going through. I know my grandma has caused him a lot of stress over the years. She was a very grumpy old lady but she was still his mom. I know part of him is glad it's over but part of him is also morning the loss of the person she was a long time ago.

I got a survey in the mail from the US district court. I have been randomly selected to possibly get jury duty for the US district court. Step one is return the survey within 10 days. If you are approved to step 2 you will be summond to Jury Duty. I of course noted on my survey on question #8 that I did have MS and that my MS limits my ability to work more than 6 hours a day. I did note that I could still serve as a juror as long as my day was no longer than 6 hours on average. We'll see if that will allow me to avoid duty or not. Part of me would be excited to be on a jury. I did take corporate law in college and was at one time thinking of being a lawyer. On the other hand the fact that it's US court and not county level court makes me think it would be a very long trial if I got selected and I don't want to miss that much work. Well we will see what happens.

I'm not deadl - just busy

2006-11-03T12:28:00.000-05:00

I think I havent blogged since my cruise to Mexico. Mexico was nice. Hot. Hot. Hot though which is not good for MS symptoms. It was 95-100 each day we were at land which sucked. Made it more like a chore walking around town shopping then an leisurly activity. The ship was nice. Food was good. I don't really have anything bad to say about the Diamond Princess. It was comprable to the celebrity cruise I was on but better than carnival hands down. Puerta Vallarta was old. Reminded me of Chihuahua Mexico where I worked for a year. We did a jungle canopy tour there where you ride the zip lines through the tree tops. It was very safe and very fun. One of those once in a lifetime type of things so I had to do it while I still can. The walk back form the end of the tour to the start of the tour was very hard and I was in tears trying to get back because I was so tired and the heat made things worse and it was up hill and I am not good with hills or stairs due to the MS. I made it though. My determination pulled me through. After I was even able to shop downtown for a bit even in the 95 degree heat. In Mazatlan we toured the Pacifico/corona brewery. Was interesting. The botteling area was not as clean as they are in the US. We got to drink all the beers we wanted for 1/2 hr in their museum and then for another hr on a bus ride through downtown. It was worth it overall. In cabo san lucas we went snorkeling. It was really nice. Then we went to the cabo wabo to get some AC and drinks. The shops around town mostly don't have AC so when you are shopping you didn't get any AC breaks. Only occasionally do they have AC and those shops you stay in longer. Overall we had a good time. It was my husbands first cruise and he said it was better than expected. The heat was diappointing. I was only supposed to be high 70's low 80's but it was no where near that.

Since the cruise I have been very tired. I have been pretty stressed at work since my main customer is transferring to our plant in Mexico and I have a new customer that is just starting up and start ups and transfers are always very busy and stressfull and I have both at once. I have been so tired after work and have been in bed between 8and 9pm most nights. It really sucks. I have been afraid that it will cause a flare in my MS which I haven't had in years so I am past due. Even today I was dry heaving at work - holding back from throwing up, sweating, tired. I planned on going home early but am feeling better now. I know I am not pregnant so it's not that. I just think its all the stress. I still might leave early today to get some rest since I am supposed to babysit the niece and nephew tonight. I think the DVD will do the babysitting so I can rest so I need to stop by blockbuster on my way home.

This will be month 7 trying to get pregnant. Found out the fertility clinic I went to closed so I will have to find anohter one if I want to continue. I am not on any drugs yet. Want to hold off for probably another 5 months before going on Clomid. By then it will have been 1 year of trying.

The in-laws are coming for christmas. Don't know when exactly or who exactly or for how long. If they were all coming I was going to schedule a family portriat with my sister's neighbor who is a photographer with her own studio. I also thought of buying tickets to the Rocketts Christmas show that we have every year here.

Last thing. We lost 2 things this year to St Louis. The world series (although I was at the ACLS game that they won and it was great) and the title of the most dangerous city in the US. We are number 2 at both.

double whammy

2006-09-26T12:32:00.000-04:00

With the good news comes the bad and vice versa is my motto. So here's the bad - once again I am not pregnant. Unum, my disability insurance company, is cutting me off after 4 more payments and claims they overpaid me $1500 this year so I need to pay them back.

This exact same thing happened exactly one year ago with Unum. They said they overpaid me and when I calculated it, it showed they underpaid me so I send them my detail and they reviewed it again and agreed they underpaid me. So they sent me a check. This year again they are saying they overpaid me. So again I will have to review the last 2 years of payments to see if they are right or not. With their track record they are probably wrong. Stupid me for not reviewing each check when I received it to see if it was right or not based on their track record.

In regards to the cut off - they recently sent me a letter saying I was approved for continuted coverage but they failed to mention only if I lose 40% of my pay. Right now the terms are if I lose 20% of my pay they will cover 60% of the missed work. After 24 payments it changes to 40% and since I probably only lose 25% of my pay I will no longer be covered. I have 4 more payments which means I will probably lose that part of my income in March. Sucks. I expeceted it originally and when I got the letter stating they approved me for continued coverage I was happy. Now they are taking it back. I hate Unum!

As far as the pregnancy goes - go figure. My husband was out of town on my fertile days. however part of me really thouht I was pregnat because I had such bad symptoms. Now I know it was just really bad PMS - worse than I have had in a long time.

So what's the good news? Well I am going on vacation for a week starting this Saturday. Mexian riveria cruise on the diamond pricess ship. Since it has been such a crappy week so far it must mean next week will be great. So far no hurricanes in the area so we are good. We have an excursion planned for each day. We will be getting a tour of the Pacifico brewery in Mazatlan. When I worked in Mexico for a year, Pacifico was my favorite beer. Esp michilada style (when in mexico as for a cervesa michilada - its with lime juice and hot sauce). We will also be going snorkeling in Cabo. Lastly we will be going on a jungle canopy tour in Puerta Vallarta where you go through zip lines in the jungle and swing across ropes. I wonder if I will be able to do it but I am determined to do it so I think I can.

weekend alone

2006-09-18T12:03:00.000-04:00

I had the weekend alone. My husband went to Fargo, ND to visit friends and go to an NDSU football game. Therefore I went shopping! My favorite therapy - retail therapy. I think I spent almost $400 on clothes, make-up, hair stuff etc. It was a long day of shopping and I only stopped because I was tired not because I had already spent so much. Got home, tried to take a nap but was too awake and then went out to dinner, movie and the bar with 3 of my girlfriends. It was a very long day and I am suprised I made it. In the past it was usually one or the other - shopping or a night out with the girls...not both. It was a good day. However by 12 midnight I was beat and had a long drive home so we left the bar. I learned I don't miss the bar scene. That was the first time in probably 3 years that I have gone to the bar with my girlfriends and let me tell you....I don't miss it. I used to be a bar junkie. Went every weekend. That's where I met all my boyfriends and even where I met my husband. Since MS I haven't been to a bar, bar. Sure I've had a drink at a resturant bar but haven't been to a bar bar - pick-up bar type place.

Sunday I did laundry and cooked. Every so often I cook a bunch of meals on a sunday and freeze half of each meal and save the other half to eat during the week. This makes it easier during the week as I only have to warm up my meals and not cook them from scratch (except maybe veggies). Then I also have some meals frozen to use up later in the month when I have days I just don't want to cook. I usually like to cook but most days after work I am not in the mood. Too tired. This makes it all a bit easier.

Today I am tired. Not sure why. Got to bed ok. Being tired brings back old symptoms and makes my legs tingle really easy. I just want a nap. I recently stopped drinking anything with caffine due to being scolded by the nurse at the fertility clinic - so I cant just have a cup of coffee to kick this tiredness.

OH yes good news - My disability insurance was suppose to run out this month. AFter 24 months of payments their definition of disabled is only when you cannot work in ANY capacity. I understood that to mean even part time. If you work part time you are not covered. However I got a letter Friday telling me I have been approved for further coverage. I was so excited because I was expecting to lose that extra income and was starting to cut back on lunches and such to save some money but now I don't have to....thus the shopping spree. I get disability payments to cover 60% of my lost earnings for those hours that I cant work. Basically I get paid for 60% of the 10 hours I don't work or 6 hrs per week of disability pay.

9/11

2006-09-12T13:59:00.000-04:00

So its 5 years and 1 day after sept 11th. I remember exactly what I was doing when I heard about a plane that hit a building in New York. I assumed it was nothing major and went about with the meeting I was conducting. Then someone else broke into my meeting to give further details that it was a passenger plane that hit one of the twin towers and everyone is watching it upstairs in a conference room that had a TV. So I told everyone in my meeting lets go up there to watch. I was watching TV as the second plan crashed into the twin towers. All I can say I felt was empty. Not sad. Not mad. Disbelief to the point I felt empty. Void of any initial reaction. As the day passed I didn't do much work. If I recall they sent us home early that day. The days that followed I donated and stayed glued to my TV of all the detials to the point I was board of hearing it. Then I stopped. I don't know anyone personally that was affected by 9/11. I guess that's good for me since then I am not as burdened emotionally by that day as others are. It's strange knowing that generations from now kids will read about this day in their history books but I was alive when it happened. Sort of like the Kennedy assination. Wasn't alive but read and heard about it. Five years later and for me it seems like it was just last year that it happened. Ironically 2 months after the attack I began a job that involved lots of travel between Michigan and Mexico. I flew about every other week back and forth. Pretty much almost everyone who sat next to me would ask if I was afraid to fly. I got so sick of people bringing it up before we flew that I got into the habbit of listening to my CD player and putting on a sleeping mask once I boarded so no one would bug me. I didn't want to think about it right before take off thank you very much.

I have not been to New York since 9/11 but if I do go I will go see "ground zero" or what ever it's called these days. I have not been to the pentagon but strange thing is most people forget that 9/11 affected the pentagon as well. We just think about NY.

Do I think it can happen again. Yes. Do I think it really will. No. I am a naieve self-centered American. But I will comply with any federal airline regulations happily to prevent it. However I think people are smart enough to come up with alternate ways to get their plan done that will in the end circumnavigate any regulations. Downside is from now on people will have such a negative prejudice against arabs because of this. Detroit and it's areas have high concentrations of Arabs so I am used to being around them all the time. They own all the party stores in Michigan and most gas stations(party stores are convenient stores and liquor stores to those outside Michigan who have never heard the term party store). So I don't freak out when I see an Arab board my plane. I feel bad for them having to deal with it though - the stares and wispering. However it's not so different than what blacks go through in many situations. It's all not fair.

H S GEE that hurts!

2006-09-07T12:47:00.000-04:00

I had the ultrasound and blood work last week to check hormones and they were fine. I had the HSG thursday and it was fine but let me tell you I think that is the most painful test I have ever had and I have had a lot of tests. When they are injecting the contrast dye into the uterus it is very very painful. I did not expect that much pain. It made me very uncomfortable to the point I was making all sorts of faces. I got to watch the x-ray images as they were injecting the dye and saw the dye just flow all over my body once it passed through my tubes. I was in pain for the next 2 days. However that day right after the test and that night were pretty uncomfortable. I had pain meds and a heating pad on but was still in pain. All that pain made me tired so I just rested.

Still waiting for the results of my husbands test. Hopefully we will hear something tomorrow or Monday.

Trip to Mobile Alabama was ok. Sort of boring. Didn't do much while we were there but hang out at my brother in laws house or hang out at his baby's momma's parents house. It was very hot though which made me very tired so I took a 2 hr nap each day.

Busy this week at work. Was supposed to see my neurologist today but he canceled on me and will reschedule next week as he is out of town.

Been more tired that usual and not sure why. I was also very dizzy Mon-Wed and I don't know why. Not sure if it's related to my flights and possibly an inner ear issue or if it was MS related but I don't feel dizzy today which is good.

test normal

2006-08-30T12:31:00.000-04:00

FSH hormone test was normal. From what I read, FSH (follicle stimulating hormone) is a hormone released to stimulate the ovaries to ripen some eggs up for release. The more stilmulation the ovaries need the older or poorer quality your eggs are. Low FSH is good and high is bad. Nurse said on her voicemail that mine was "good". So test # 2 was normal. Test # 3 is tomorrow. Part of me thinks they will find blockage in my tubes due to my endometriosis. I know the endometriosis already is clubbing my tube fingers on one side. This makes it harder or impossible for the egg to travel from the ovary into the tube. It's not something they can fix either.

The HSG test tomorrow is where they inject iodine into your uterus and then view the movement of the iodine through x-ray in our uterus and out your tubes. It helps show uterus shape and position and any possible internal cysts and blockage of the tubes. The iodine spills out your tubes and your body eventually absorbs it. They said it causes cramping so I am supposed to take 600-800mg of motrin before I go and then some after. I won't be going back to work after. Don't need the stress of dealing with pain while working. At least I will know the restults of the HSG right away while it's happening.

My husband gets his semen analysis Thursday as well. How embarassing is that? I would have major stage fright. We won't have the results for about 5 days after that.

Going to Mobile Alabama this weekend to visit the brother in law & his new baby. My husbands parents and uncle and aunt will also be flying in so it will be a small family reunion. My husbands family does not live near us. They live all over, so we never get to see them. Last time I was in Mobile, which was this past Christmas, I was dealing with spasticity really bad in my back so the trip was rough and I was not plesant. This time it will be nice to be able to appreciate seeing everyone more and not being in so much pain.

My gradfather on my mothers side is not doing well. He wants to die. He's been very sick for a few years now. Not much energy so he basically is in bed or in a chair all day with little to no movement. I know he doesn't like the quality of his life these past 2 years since he was always a go getter and traveled a lot. He's depressed and just wants to die. He's on a lot of meds and oxygen. He even takes morphine. My mom thinks my grandma and him are saving up the morphine and not giving it to him so that they can end his life with it through a large dose. He complains that he hasn't been taking morphine so he's in pain but when pressed it's not that the nurses haven't been brining him the morphine. He lives at home with my grandma and I know taking care of him is a huge burden for her. They are both in their mid 80's. It will be very sad to see him go but losing someone over a long period of time is easier to deal with then a sudden death. My other grandfather was sick for years as well due to heart conditions. My father pretty much took care of him and my grandmother over those years and when he passed it was quite a relief for our family. That was about 10 years ago. He's the only grandparent I have lost. I wasn't very close to him so it didn't really hurt. I have been very close to my maternal grandfather so it will be hard to see him go. I think it will be hard to see my grandma hurt. She will be so alone. I plan to go visit them next weekend...if he makes it to then. My brother took the day off yesterday and visited them. He knows it was his last time seeing him. My grandma even told him that. They live about 2 hrs away so when we do visit it's only on the weekends.

fertility update

2006-08-28T10:47:00.000-04:00

I'm not pregnant for the 4th month in a row so I schedule some tests. I had the ultrasound this morning of my uterus and ovaries and everything is normal and fine. I had blood drawn this morning for FSH tests and will know the results tomorrow morning. Thursday I have an HSG scheduled where they inject die into your uterus and watch it backflow out your tubes to see if everything is ok and in order and not blocked. I guess this test causes cramping so I am to supposed to take motrin before I go.

The new dream

2006-08-25T12:16:00.000-04:00

A few months ago I posted about the death of a dream. All the thoughts and emotions you go through when being diagnosed with a chronic illness like MS. The first stage for me during a diagnosis process was the "what if's". Once time passed the what ifs died down along with my dreams. Then I went into the tunnel vision phase where all I thougth about was MS. It was all I read about, wrote about, thought about and sometimes all I talked about. I feel like I am finally out of that tunnel vision phase. I don't think about MS every day anymore. I don't hate MS as much as I used to. I don't blame MS for my life anymore. My life has changed since MS but now I feel like it's just a new routine and I am starting to appreciate my new routine. I have been off antidepressants now for I think 4-5 months. I feel like I am finally out of my depressive state of mind that I have had for the last 2-3 years. I don't think people even realized I have been pretty depressed over those last few years. It really hit me when my doctor asked me once how much time passes between each time you think about MS. I said a few hours. Now I can say a few days. I never thought I would get to a point that I don't think about MS every day multiple times a day. I figured my symptoms would be a painful reminder of it but now my symptoms are just noise...not symptoms. They are a part of ME now not a part of the MS.

I have learned my limits and I still do test them once in a while but not hardly as much as I did before. I force myself to rest and don't blame myself or make myself fell like I am being lazy. I don't try to do it all anymore. I don't feel guilty asking others to help or to pick up my slack. I finally fell like I have crossed a hurdle in the process of dealing with a diagnosis. A hurdle I crossed so much faster with my other illness diagnosis. I think it took longer this time because of the daily symptom reminder and the fact that I now had 4 illnesses and not just 3 or 2 or 1 anymore.

Time was my treatment and time is what it took to get me here. No matter what anyone said or did it didn't work. Only time helped me heal. Time helped me create new dreams and forget about the dreams I once had. Many dreams that I felt died are in fact still here. I still dream of going to Austrailia, owning a corvette, raising a child, gardening, decorating my house, shopping and traveling. I don't dream about that next promotion anymore because frankly I don't want it anymore. I don't want the stress or the travel. I don't dream about that big house anymore because I don't want it anymore. Who wants to clean that many rooms or walk that many stairs. I don't deam about waking up and all these diseases are gone because I am more realistic than that. I don't dream that this will all get easier because if I just go at it day by day when you look back it was not that hard. I do dream about getting rich so that I can quit working and volunteer instead to help others like me. I know that won't come true but I can still have some unrealistic dreams right?

I'm saved!

2006-08-23T12:32:00.000-04:00

I was removed from the chopping block at work. I have been spared. I have been reassinged to work on another account part time starting now and full time once my current customer transfers out. Sounds like I will be replacing someone else on that team that they plan on firing. However I don't think they will fire him until Nov which will be strange. How can people not see the writing on the wall when they add someone else to "help" them do their job? Well at least I know now I will not be fired. In fact I found out that a few people were fighting for me to be transfered to their team. Also I am expecting a reveiw this week (haven't had one in over 2 years) and a raise!! Yippee!!

Downside is I lose my disability insurance payments this month. Per our insurance policy they stop covering you if you can work in any capacity....even part time. Since I do work part time I am no longer covered. Sucks...since that means losing about $800 per month after taxes. Oh well maybe my raise will make up for some of that.

Fertility plan

2006-08-17T12:52:00.000-04:00

Saw the fertility specialist. Gave me 2 options
1) conservative plan just wait another 6-8 months of trying before doing any testing.
I said well if I didn't have all these illnesses I would have no problem with that but the thing is I am purposefully OFF ALL MY MEDS and time is not on my side in terms of holding off my dieases getting worse
2) more aggressive approach he recommneded was have the HGC x-ray test where they inject dye into your tubes and uterus and see if they look right (no blockage or issue with shape). Then also have an ultrasound to look at the eggs in the ovaries during the 5-10 day of your period. Lastly my husband to have a semenanalysis (lucky him).

I think I will go with plan 2 but wait to see if I am pregnant this month and if not then do those tests. He said then if any of those tests show something is wrong then we can pursue correcting them. Plan #3 would be fertility drugs (clomid) to enduce egg production and release but he is not in favor of ever giving me the stronger fertility drugs that could cause multiple pregnancies because of my illnesses.

One suprising thing he said was I really shouldn't worry about the endometriosis causing me fertility problems. It is actually less of a chance of it causing fertility issues than I think it is and since we have no proof that I truely have fertilty issues because I haven't tried long enough, then no reason to pursue removing it any time soon. However if the pain or bleeding gets to a point that it is inturrupting my quality of life then we should think about removing the endo but only for that reason - not for fertility reasons only.

So we should see in 2 weeks if I did get pregnant this month or not and therefore if I should go forward with these tests or not.

infertility?

2006-08-14T13:21:00.000-04:00

I have been trying to get pregnant for going on 4 months now with no luck. I know I have like a 20% chance each month of getting pregnant for an average person but I am not average. I am below average due to my endometriosis and being over 30. I

've read up a bit on when to start seeing a fertility specialist and asked a few people at work. Seems if you know you have endo then you should just start seeing a fertility specialist. My old gyno said I need to try for a year. Some web sites say after 30 you should only try for 6 months then see a specialist. Second concern I have is I think my endo is growing back. I am starting to get mid month cramps that last for a week or two. That said I made an appointment with a fertility clinic at the local hospital. Thing is they don't work with insurance compaines. They bill you, you pay and then you submit to your insurance company for reimbursement. My first visit/consultation is free. It's wednesday of this week. Hopefully they will give me direction as to when I should start having tests done to check my fertility/horomones/blocked tubes etc and what it will all cost. I know my insurance says they cover infertility but not IVF which is good. Will they think I am crazy for wanting to see a specialist so early in the trying process or will they wonder why I waited knowing I had a disease that is the leading cause of infertility.

4 months isn't long for trying but man I can see how people go crazy after trying for years. It's already starting to bother me - the hoping, wondering, and then the disappointment each month. Even sex is getting boring and like a chore. I even used ovulation tests to improve my chances. Part of me just knows I will never be able to have children so I feel like I am wasting my time and emotions even trying. One thing I hate hearing is my friend or sister or so and so has endometriosis and they didn't have any problems getting pregnant. Ughh. Thanks buddy....but chances are I am not that lucky so thanks for rubbing it it. I just wish I could bypass all the months of wondering waiting and disappointments, all the stress, and fast forward to being pregnant.

nothing new

2006-08-08T16:19:00.000-04:00

No major changes on the job front. Still concerned I might lose my job although I have been given some feedback that says otherwise. However those giving me this feedback are not the ones making the decisions on who stays or who goes so I can't count on it 100%. Regardless the hubby and I are on a spending strapdown. Trying to save some cash just in case I do get laid off.

Funny thing last night. I was weed wacking with my gas powered weed wacker. I haven't done that in years (pre MS days I think). Anywho, the vibration basically made my hands and arms up to my elbow go numb and also my strength and control in my hands and arms was little to none. It got better as the night went on. I was only weed wacking I would say 15 minutes and the affects lasted hours. It was very strange. It gave me a glimps of what it would be like if that happened permanently due to MS. I will ask my doctor about this nex time I see him.

I have not been taking my Elmiron for my bladder disease for months now and the effects are starting to show. I have been having some painful bladder days but mostly just nights. Frequency is also crazy on my bad days (every 15 minutes or 1/2 hr I have to go). Its a slap in the face that I do have Interstitial Cystitis. Lucky for me when I am on the meds I barely even remember I have IC as the meds control it. Then if I go off the meds, about 3-5 months later the symptoms start creeping back up on me and remind me that I do have this stinking disease. I guess I should be lucky that I am one of the 20-30% with IC that respond to this drug. Other people who don't respond have to try other non-pill therapies which suck.

Crohns ok. During my period things got worse but back to normal now

Endometriosis is starting to worry me. So far periods have been bearable but its the mid cycle cramps that I am starting to see. About 3-4 years ago before my official Endo diagnosis my worst point I was bleeding all month and cramping all month. However it all started with the mid cycle cramps. So I am wondering if the endo is coming back...starting to grow again. If that's the case, my doctor already told me if it came back he would do laparascopic surgery again and this time remove the endo. Last time my previous doctor did not remove the endo during surgery since sometimes the scars from removing it can be just as bad (or so she said).

Oh yeah got food poisioning last Thursday. Went to dinner with some girlfriends, ordered a grilled veggie sandwich and by 2am that night I was feeding it to the toilet. How can you prepare a veggie sandwich wrong?!? Maybe they set the bread down where raw meat had been or something. Needless to say I couldn't go to work the next day and it sort of whiped me out all last weekend. Darn MS makes the little things like food poisioning turn into bigger things.

Niece - Job - and other stuff

2006-07-31T12:50:00.000-04:00

I have a new niece. Born Wednesday. Her name is Emma. She lives in Mobile Alabama so I don't know when I will get to see her. It's my brother-in-laws daughter. Sucky thing is he and the mom are not together but so far things are OK between them.

No major turn of events on the job front. I have been told by a few key players that I shouldn't worry about losing my job. My boss told me I was one of the best people in my position and that my illness and hours should not in any way come into consideration when deciding who to lay off. He said the HR manager strongly affirmed that. I reviewd our financials and we can afford me to not work assuming I get unemployment compensation and that we cancel cable and internet and I stop seeing my shrink and we do go out to eat or any other fun activity that costs money.

I have been having numbness off and on in my back I would say the last couple of weeks. Especially in the morning. I was thinking today it might just be the heat. If I remember last summer I would get little psudo exacerbations when it was hot outside even if I was never in the heat. Somehow my body knows it's hot outside so it goes into MS flare mode due to heat.

Did chores around the house this weekend - cleaned windows, laundry, exciting stuff like that. Went to dinner and a movie on Saturday. Saw Pirates....sucked! I never saw the first one but my husband did. He didn't like it either. Long movie too. 2.5 hrs. Sunday I made a chicken in my almost never used rotissery. My brother came over and hung out during the day and had dinner with us. He gets lonely so he calls when he is board and lonely.

Going to see a Tigers game later this week. Tigers are best in the league and ahead of the wite sox by 8 games. Tigers haven't been this close to championship since the 80's. It was only just last year you could go to a game and not pay because so many people were giving away their tickets. Now many game actually sell out. We got Lions season tickets this year too. Only half the game though as we split them with someone else. First preseason game is in 2 weeks. Now if only we had Piston and Red Wings tickets...

Losing my job?

2006-07-24T18:05:00.000-04:00

My company is restructuring....this means cutting out some of our positions and customers at the location I work at...this means the 2 jobs I am doing today will be gone by the end of the year. Besides my job, 3 other people at my level will lose their position and 4 people at a level above me and at least 2 people in the level just below me and many others below them.

In my company if your position is gone - it doesn't mean you are gone. They usually review all people in our position and push out the weakest and rearrange the rest. However I am the weakest because of my illnesses. I don't work 40 hours a week and I sure as heck don't do overtime. Hoever asside from that I do feel like I am the strongest of the 3 in my level who's positions will be eliminated.

So what am I doing to CYA? Well theres a new customer coming on that my boss actually asked me to manage not too long ago. I said yes at first but realized I couldn't take on a new account at this time in addition to my current work so I declined the next day. Today I decided to change my mind eventhough they already assigned someone else to manage this account. I decided to help him. I volunteered. The guy was glad because he is new (and as an added bonus - only on the account temporarily for 3 months). My boss said good....considering the future of your positions.....good move. Given this guy is only on the account for 3 months, if I get an in now, I will be a good backfill for him when he moves on to his next project. That's my plan in terms of not losing my job. Will it work who knows. They can decide after me helping him for 3 months that someone else can take over it instead of me and I am gone regardless.

What's the price of helping? More hours & more stress = feeling sick. What's the alternative = losing my job and not trying to do anything to prevent it which will lead to stress and feeling sicker. So regardless of the outcome, I will feel sicker...

What else am I doing to CYA - right now I am on FMLA for the hours I miss each week. I was planning on going off it and working at least 32 hrs to be considered full time status....and my boss agreed to pay me full time. However staying on FMLA gives me added protection from them firing me. So I think I will forefit the extra income I would receive by going off FMLA and keep with the extra legal protection. Also because my company is a government supplier we have to comply with the Rehabilitation act which requires the promotion of people with diabilities. I have yet to fill out the discolure paperwork to tell them I want to be considered under this act....I think it's time I do so. This means they would have to promote (or not fire)someone with a disability over someone without assuming equal level of skill and training.

Sucks I have to use laws to prevent them from firing me and not just based off my track record as an employee and my good talents and skills. However I could just be overly afraid and they do see past my illnesses and feel I am worth keeping. But you can never be to safe.

I survived!

2006-07-18T15:56:00.000-04:00

Saturday was 95 degrees and I was out in the heat from 10am until about 6pm. The only shade was because I was smart enough to bring my patio umbrella from my patio set. I also brought my cooling vest and 1 set of refills in a cooler. We brought our own cold water and sandwiches.

Over 1000 riders did the 75 or 100 mile bike tour on Saturday. We worked the last rest stop before the finish so we saw the riders at their worst. It was crazy! Those people are insane for toughing out that heat. Some of them said we had the harder job because we didn't get the shade or the wind during the riding. I say they had the harder job. I could tell some were hired professional riders. Guess the companies that sponser them pay for them to do charity rides as well. Heck as long as the end result is donations to National MS society I don't care who they are.

Overall it was a great experience. Everyone was really friendly. Got to talk to a lot of the riders and educate some of them on MS (they asked about my cooling vest a lot which started the MS talk). I even educated the others working my rest stop. One couple who worked my rest stop are retired and do all sorts of volunteer work for different organizations to keep themselves busy.

Our job was to keep water jugs on ice, made gatorade on ice, cut up apples and banannas and tried keeping them cool (not easy when it's that hot). Mostly we spent a lot of time passing out ice bags and putting ice in people's bottles. Other rest stops ran out of ice and even water...we ended up going to a party store to buy more ice on our own so we wouldnt run out. Not fair to the riders if they can't manage supplies better. I think we were the favorite rest stop on Saturday because we thought of putting ice in these extra plastic gloves they gave us and passing them out as ice packs for people to put in their helmets while riding or hold on their neck or down their shirts.

Sunday we worked the finish line. Management of what the volunteers were to do Sunday was poor. We stood around trying to find out where to park, where to go, what to do for at least the first 1/2 hr. Eventually we ended up working in a sheltered room (no a/c though) organizing the luggage and telling riders what to do in terms of picking up their luggage, where showers were, where food was and passing out the completer packets. Many remembered us from the rest stop the day prior. That job was a tad cooler maybe only 90 degrees in the shaded building but it was not as fun. Not much labor though once the luggage was organized

Overall I would rate it a great experience and I will do it again despite the heat. My husband is thinking of training to ride it himself next year as motiviation to get into shape. I am quite suprised that the heat did not affect my MS symptoms at ALL!! sure I was a bit tired by the time I got home each day but even the non ms'ers would be too after all that heat.

MS150 and Primetime and MD vs MS

2006-07-14T13:13:00.000-04:00

This weekend I am volunteering at the MS 150 bike tour. Saturday I will be in the 90 degree heat all day at rest stop #7 cutting up fruit, making sports drink and keeping the johns stocked with TP. Sunday I am at the finish line passing out completer packets...again in the 90 degree heat. I'm looking forward to it but not to the heat. I plan on brining my cooling jacket and an extra set of cold packs.

Last night Primetime had this Adam the healer on who lives in BC. Well basically I don't believe in people being able to heal you but I do believe the mind over matter theory. If you don't let MS bring you down mentally you are better off physically.

However Primetime made one major mistake which further spreads the ignorance of the world. I don't know about you but I get a lot of people confusing MS with MD and vice versa. I am so used to having to explain what MD is and what MS is. However I never expected a NEWS program to get it confused as well. During the segment when they were describing basics behind MS they showed an internet page explaining MD and not MS!!! I couldn't believe it. How could they get something so wrong?!?? I was so shocked I thought I must have seen it wrong that I rewinded it 3 times to prove I was not wrong. I am so disappointed. It's insulting that people who are supposed to be reporting factual information about my disease get it wrong. I love it when news stories talk about MS because it spreads awarness and with awareness comes less shame, less segregation, more support. But when a news report insults me by giving poor information it does more harm than go to the MS world.

So I got on the primetime message board and someone with MD already wrote a message about noticing the same error. I just added a reply to his comment.

Cold is 95% gone. It's been really brining my energy down. Haven't accomplished much after work this week because of it.

busy weekend

2006-07-06T12:24:00.000-04:00

This past weekend my cousin, his wife and their two kids came to stay with us. It was a busy weekend for me. Saturday i finished my prepping of the house and they arrived around 2pm. WE went to the beach a couple of hours later and came back and had dinner. Sunday we went to my sister's for a family get together and when we got back we stayed up late chatting. Monday we went to the zoo (I took my wheelchair) came home and grilled out and then did some fireworks. They left Tuesday morning.

For me it's next to impossible to stop and rest until I really really feel like I need to rest. By that time I over do it and deal with the consequences that night (with stabbing pains, prickly pringles or numbness). Overall I handled the weekend pretty good. Unfortunately I started getting a cold on Monday so that drug me down Monday night and tuesday. I basically slept off and on all day tuesday to help get my energy back and to put my cold in check. However I did have some problems with my right leg, right hand and balance Tuesday and yesterday.

Yesterday I was still a bit more tired than usual but my cold was slowly going away. I had balance issues at night for what ever reason (couldn't walk a straight line if my life depended on it). My right leg would also tingle all day - calf only. Today I don't seem to be having problems with my leg or hand. Not so sure the balance issues is completely gone yet. Cold is mostly gone.

Side issue - I am having problems with a tooth. Started I think Tuesday. It hurts to put hot or cold food on or near that tooth. I think I need to call the dentist. It happend to be a tooth they just recently put a filling in. ughh.

No Flare - lost dreams

2006-06-26T12:28:00.000-04:00

Well I had a post all written up on Friday and sent it and my computer took a vacation. So here I go again.

My symptoms that I was having last week are gone. I am once again back to "normal". Guess it was just a period psudo exacerbation. How strange. But then again my period makse all my diseases flare up at times. Darn horomones

This weekend we worked in the yard, went to dinner and a tigers baseball game saturday night. That was a long day. By the time we were driving home I was so tired I was holding back from puking. That's my sign I went to far...I puke. Sunday I went to my friends' sons 1st birthday. It was a nice day. Then I came home and cleaned patio furniture. Was pretty tired that night. Just dragging.

Today I am doing good. Monday's always suck. Hard to get back into the swing of things and not being able to sleep in. It will be a hectic week at work as it is my customers qurter end and we have a lot to build and ship. I also have my cousin's family coming to stay with us this weekend.

Sucks we don't have sod yet. Just 3-4 foot weeds. I feel like a hillbilly. Darn landscape company keeps pushing us out "due to the rain" however it's now over a month past when they first said they would do our sod so we are begining to wonder if they have skipped over us in favor of more profitable jobs. We're ready to get quotes from other people to see if we should just go with someone else. The guy that was supposed to do it is sort of friends with our neighbor and was a bit cheaper than our other quotes. Plus he lives only a few streets away. That's why we went with him. I hate contractors.

So glad I don't have a true MS flare.

I got sad this weekend when we drove past the subdivision we were supposed to be living in. Before my diagnosis was changed from transverse myelitis to multiple sclerosis my husband and I had put money down on a new house to be built in this new subdivision. We got an awesome treed lot that was 1acre. We had everything picked out, carpet, brick, cabinets, appliances, etc. However the builder and the city were still in negociations so they were way behind schedule and haven't even dug a single basement yet. Original move in time was supposed to be October of 2004. In July of 2004 my neurologist officially changed my diagnosis to MS. This changed eveything about my future. I now had to plan as if some day I would lose my ability to work. Some day I would lose my ability to go up and down stairs. So we decided to cancel the house. 2 reasons. The house was 2 story and it would be best in the long run if we just had a one story house with the laundry on the first floor. Second reason was money. It would be best if we went with a cheaper house so that if needed we could live off one income and still make the mortgage payment. So luckily we were able to back out and get all our money back. There's now a house on the lot that we had originally picked out. They were landscaping the yard when we drove by. Its a beautiful lot and the houses are nicer and bigger than the one we have. Then again so is the payment. It was sad. I saw my lost dream and someone else had it. We eventually did find that one story with a laundry on the first floor. In fact it was even new construction. It is a treed lot but not quite an acre. The houses around us aren't as nice as the other sub but we do get private lake access. I have made our new house a home so I wouldn't give it up now. It's just that the other house is a reminder of ALL the dreams I lost when I was diagnosed with MS. It made me thing about where I would be at in my career if I had not gotten MS. I would be making so much more money now. But then again I would be working obscene hours probably too. I miss out on so many days and nights out with my friends due to limited energy.

I still want to go in the model home in that subdivision. The model is the exact lay-out of the one we were going to have built. My husband thinks its a bad idea. That it will only make me sadder. Part of me thinks maybe I will see the rooms are so much smaller than the rooms we have and I will be greatful for the house we have. In theory I know that's unlikely. I just want the torture.

MS flare?

2006-06-22T11:25:00.000-04:00

OK so I got my period. arghh. Then I got a migraine yesterday so that wasn't fun. Tried to leave work early so I could rest since it makes me very tired but I didn't get out of here very early.

Also yesterday I noticed some strange symptoms - numbness in my back mostly my right side. Started in the morning. Not sure when it went away. Today I have hypersensitivity in my back. Yesterday I was also having brain issues. Can't think. Can't remember what I was doing. Losing my concentration and train of thought. Just felt stupid all day. Today still sort of feeling that way. Like my brain is in slow motion. Then there are my legs. Not a good leg day. Get numb with the slightest amount of walking and I trip a lot. So is this because of my period...hormones causing psudo exacerbation? Or is this the start of my next MS flare? I haven't had a flare (per my doctor) since December of 2003 and since the average is a flare every 1.8 years I am over due. Also it serves me right since I did stop taking avonex about 4 months ago I think. I am beginning to worry. I don't want a flare right now. Things are so busy at work and I have a busy weekend ahead of me and company coming the following 4th weekend. Top it all off my power went out at home in the middle of the night. Hopefully it will be back on when I get home from work. There were bad stoms here last night and some tornados although not near me. Hopefully it will just go away and not get progressivly worse. One can only hope...

Happy 1st Anniversary to me

2006-06-20T13:03:00.000-04:00

It was my first wedding anniversary on sunday. We went out of town for the weekend to Traverse City Michigan. Drove up Friday night, had a drink and snack at the lounge in our hotel and went to bed. Saturday we went shopping in downtown Traverse City waiting for the sun to come out. had lunch and a quaint place and then in the afternoon we rented a jet ski for an hour and hit the waves (lake michigan - grand traverse bay). After an hr of riding we rested at the beach until I couldnt stand the heat anymore. The water was so cold that you felt like you put your feet in a bucket of ice so it wasn't easy to cool off in the lake. AFter that I took a nap (sun zapped me out) and we went on a 2 hour tall ship sailboat ride (scooner). It was nice but the boat only went back and forth across the bay and not out of the bay into the lake so the scenery got boring. Guess it was too rough to go out to the lake. Then we got a late night snack at a mexican place but stupid me orders their top shelf margarita....a few sips later I was so tanked I went and passed out in the car with only eating a few bites of my dinner. I thought I was drugged or something because I never felt that bad that fast from a few sips of a drink.

Overall I have been feeling good. Not great...don't think I will ever feel great again. Just good. Nothing to complain about.

Baby making news - I haven't had my period in I think 7 weeks now. Took a pregnancy test but it was negative. My system is so out of whack since I stopped the birth control. My last period was 2 weeks late now I am going on 3 weeks late this time around. I wonder how long it will take for my body to get back to a normal cycle.

last week was stress hell

2006-06-13T12:46:00.000-04:00

so I worked probably 9+ hrs each day (although I will only get paid for 6). I was so mentally and physiaclly drained by the time my customer left for the week Thursday night that I took friday off just to rest. I did do some house work but not much else. Even took a walk down to the beach and just hung out there for a while. Strangly though, I was more tired than usual saturday and sunday. Probably just lasting effects from the previous week.

Down note - those options I was supposed to get at work, I misunderstood my boss and I will not get them. I fought it - my job was changed 2 years ago - against ADA rules - and because of that I was put into a class that changed my pay (options and bonus). So it the aftermath of the job change still coming back to haunt me years later. I was crying in my bosses office since it brought back all the old pain I felt when they forced me out of that position. I have since been reinstated to that position but it doesn't fix that I did not get options last year. He said write up a summary of my history and we can talk to the VP.

After that dicsussion I told him my disability coverage would end in august. I get 60% of the pay I miss for the hours I don't work. However if I work on average more than 30hrs a week I get none so there is no incentive to work more than 30 hrs....or at least not to report it. Based on that I told him when my insurance runs out I will be bumping up to 32 or more hours a week since 32 hrs is considered full time and therefore I won't need to file for FMLA for the 8 or less hours I don't work each week. The up note is that he said well I think you should be paid full time even if you don't work all the hours. You are being paid to get the job done and shouldn't be counted by how many hours it does or doesn't take and you are getting the job done in the hours you are working. Therefore it's like getting a raise. Right now I lose 10 hours a week but 60% of that I get back so it's like losing 4 hours of pay a week. If we can agree to give me 100% pay it's like getting a pay raise of 4 extra hours a week. I was fully expecting to lose 25% of my income when my disability ran out and if he is willing to give it all back it more than makes up for the options issue. I think I will tell him to disregard the options issue if we can agree to me getting 100% of my salary and I work 32-40 hrs a week depending on how I feel.

Stress and MS

2006-06-05T12:35:00.000-04:00

I had to work this weekend. Saturday and Sunday. I have a big customer audit this week and we needed to build samples to be ready for the process audit. Of course things didn't go really well and the customer will be in all this week drilling us on our issues and I am not looking forward to it. It is a very stressfull week and was a very stressful weekend. This stress is wearing me out and giving me psudo exacerbations of my old MS symptoms. Stabbing pains, tingling (more than usual) jumps and jerks esp at night and essential tremmors. I am tired as heck and feel like someone beat me up. Since I had to work all weekend I didn't get any good rest so I am running on negative energy. I don't know how I am going to make it through the week. I have to stay up-beat and happy for the customer but just feel like I could pass-out at any given minute. I used to thrive on this type of stress. It would give me more energy. I loved it. Now I hate it and I hate that I hate it. I hate that stress is now bad never good. It makes me feel like crap and that in turn causes me more stress. I wish I could get a massage each night after work. That or just a foot rub. It was a beautiful weekend but I was inside running back and forth most of the day and I haven't done that much walking or standing in years. I am suprised I can still walk today. ughh...

arrg the heat!

2006-05-30T12:37:00.000-04:00

This weekend was sunny and HOT. It was in the 90's each day! Good gracious. So I used my cooling vest. Well it works...but it would be nice to have something to cool my face. If my face is hot then I am miserable. Even if my torso, wrists and neck are cool. In that heat, the cool from the ice packs only lasted an hour or so. Then I had to change out the icepacks. Needless to say I didn't spend much time outside. An hour here and hour there but that's about all I could take. So while my husband worked in the yard I was in the basement painting outdoor furniture (rocking chairs, table adirondack chairs) Boy does that get boring! The little time I was in the heat did kill me though. Even after cooling off it steals just a bit of energy to wipe me out more than usual. At least I know what to blame it on.

I stopped taking my lunesta this weekend as well so I am having problems falling asleep. I can stay asleep ok now but the first 2 nights I couldn't. now I just lie there for over an hour trying to fall asleep. So frustrating.

I watched my tivo of dr.phil last night. Nancy Davis was on there talking about her new book related to dealing with a diagnosis. She's that rich lady that has MS that doe the race to erase MS fundraiser with tommy hilfiger. It's hard to take advice from someone with so much money who has MS. I mean she doesn't have to worry about if and when she will lose her job and therefore income and therefore insurance etc. She doesnt' have to worry about if she can afford to pay someone to do this or that so she can save her energy. All the things I use my energy to do outside work she probably pays someone to do so therefore she probably can do more leisure things, things I have to give up due to my lack of energy resources. I'm sure she has her dark and down days, I don't doubt that, but I don't think she has as many legitimate worries as the non-rich ms'ers.

Nothing new = good news

2006-05-22T12:38:00.000-04:00

Nothing exciting going on. No new tests. No new drugs. No new doctors. Nada for the last few days.

Tomorrow I get a wisdom tooth pulled (has a cavity now - doc said pull it or fill it and I said pull it). Last time I had a wisdom tooth pulled I was about 20 and the oral surgeon who did it was hot and I was so nervous I passed out while he was drilling it into bits and pieces. Boy was that embarassing. My regular dentist is in no way hot and is quite the dork so if I pass out this time I won't be embarassed. My wisdom teeth all came in full when I was 17 or so. one came in crooked so the doc recommended I have it pulled when I was 20 cause it too got a cavity. Last time I got dry socket from it getting pulled which sucks. Hurts. Then you have to put this clove marinaded crap in the hole from the tooth to prevent and heal the dry socket. It took years before I could stand the smell of cloves again. I hope I don't have to go through that again.

This weekend was nice weather. Friday we went to the downtown hoedown since my husband and I like country. Its the largest country music festivle in the us supposedly. it started 2pm friday and continued through thursday night. All free. We saw Red Hill (semi local - pretty good) Rodney Atkins he sings "if your going through hell" He was really good. Then we saw Trent Tomlinson - I didn't really like him. nice voice but thats it. Then we saw Miranda Lambert - I have her CD and liked her but she had a chip on her shoulder during her songs because everyone wasn't going crazy. Then we saw Terri Clark, she's great. Knows how to work a crowd. Last but not least was Josh Gracin. He's from Michigan. Grew up in Westland so his friends and family were there. He was really good. One of those singers who is so greatful to be on stage you can feel it. We left in the middle of his act to avoid traffic and being shot. (last year during the freedom festivle fireworks there was a shooting in heart plaza where the hoedown was at). We were there from like 3:45 to 11pm or so. Needless to say by Saturday morning I was beat! I did a bit of yard work in the early evening after resting all day.

Sunday was grocery shopping day and cooking day. I decided to cook 3 meals to freeze and refridgerate for later in the week. Then after that my neighbor and his visiting dad came over for dinner so that was meal #4 I did. That's about all I did....cook and cook all day. Just saves me from cookin after work and wearing myself out.

My gallbladder is normal

2006-05-18T15:56:00.000-04:00

At least one of my organs is normal. Got my HIDA scan results and the nurse said the test came back normal. Yipee! Now I just have to get a tooth pulled next tuesday and I am all done with doctor visits, medical tests and procedures for a few weeks. Geeze.

Test history

Here's a history of all the types of tests I have had at one time or another in the last 10 years

Blood test - various including EBV, Lead, CBC, HHV-6, HHV-8, Devics, etc.
MRI - 5 total. Brian, cervical and thoracic spine
CT scan of the abdomen- once
Ultrasound of the abdomen & vaginal 4 times
X-ray various bones, teeth and one of the full abdomen
HIDA Scan - once
IVP - once
Cystoscopy - once
Cystoscopy with Hydrodistention - once
Colonscopy - thrice
Small bowel series - once
Laparascopic surgery - once
Pap smear - many
Poop smear (as I call it - aka poop on a stick) 5 times
Colposcopy - twice
Cryosurgery - once

I think that's all I can think of right now...

Waiting sucks.

2006-05-17T12:35:00.000-04:00

I couldn't wait any longer to check on the test results for my HIDA scan so I just called my doctors office. nothing yet. they have to send a message for the nurse to call me back. But the results are in....so hopefully they will call me this afternoon.

So what if it is gallbladder issues and I have to have it removed....ok no biggie. What if its not and there's nothing wrong. Well then that should be good news. I don't want to have surgery...I just want all these medical tests and issues to stop so I can have a dr break.

HIDA Done - Pathology Report good

2006-05-16T09:59:00.000-04:00

Had my HIDA scan yesterday. Was suprised how easy it was. They dont even make you put on an ugly gown. The tech didn't have the easiest time getting my IV in... I would say by her age it was based on her lack of experience. I did have the second part of the test where they inject this chemical that makes your gallbladder contract... owwwie! Man did that suck. Didn't last long at all but I swear I had phantom pains the rest of the day that felt similar to the cramping the meds caused. It also makes you nauseus but it's not too bad and barely lasts long at all. Comes on sudden but then gone before you know it. So I get results Thurs or Fri

AFter the test I got a voicemail from my gastro's office that my pathology report from the biopsy's taken during my colonoscopy were in. Nurse said just shows mild Crohns and call as needed for an office appointment. Which means nothing new....nothing to worry about. Yipee! I reviewed the pathology, surgery and pictures of my last 2 colonscopies and my last one said Mild Corrosive something and my first said acute which means from colonoscopy 1-2 it did get worse but between 2 and 3 it was the same. I did notice that between 2 and 3 my ascending colon now shows signs of Crohns where it didn't in the past....so maybe a bit worse but still just Crohns and not increased from Mild to moderate or severe which is good. Especially considering I don't take anything for it. Not for well over a year. Just didn't see the point since it didn't stop the symptoms.

Co-worker had a seizure yesterday at work. Was very scarry but I showed up a few minutes after it started. Everyone was just standing around which pissed me off to no end. DO SOMETHING!!! They did in fact call 911 and told the departmentmanager who was trying to contact HR to get his emergency contact info. In the mean time I was like get his cell phone from his pocket....then I called his dad and MOM in the same time it took them to begin searching for his emergency contact info. Geeze!! I talked to his mom who lived out of state and asked her if he had diabetes, seizures, food allergies etc and she said no to all. Then the paramedics arrived and I informed them of what his mom said. Then we finally got a hold of his dad (when I called his dad, the office secretary was looking for his alternate numbers of where he was). His dad said he in fact did have a seizure last friday. first one. Went to the ER then and they couldn't find anything (Ughh what a pain huh?) I was so scared for this kid. He is a new hire so no one really know him yet. I was pissed no one knew what to do. I was scared what if it was me and no one knew what to do. I decided to write up a page of emergency contacts, medical history, medications and allergies and keep it in my desk, give one to my boss and a few to other co-workers for good measure. Poor kid. I keep worrying about him. I had a hard time last night sleeping because I was thinking about him and his family and what he's probably going through.

HIDA Monday

2006-05-12T16:10:00.000-04:00

My HIDA scan is scheduled for Monday morning. Can you believe this....they said no narcotics 4 hrs before the test. Darn the bad luck. I was all ready to take some Crack before the test. Ha ha

No eating or drinking 4 hrs before which is no problem. I can skip breakfast and still survive. Test can take up to a few hours. Yipee. Lucky for me there are new off hospital testing sites popping up all over so it's easy in and out. No need to go to a hospital, walk a mile and go through those long corridors.

Feeling ok this week overall. Mon and Tues had a good amount of energy after work so I was able to cook dinnder and work in the yard. Wed and Thurs much less eneregy. Didn't do anything after work but rest. Today sort of tired but heck its FRIDAY! They just opened an H&M store in Michigan and I am going to check it out. Hopefully it won't be too busy.

Been raining here for the last 2 days and is supposed to rain non-stop thorugh Monday. Ughh. Guess it's an in doors weekend. Good for lounging and veggin'

OK so it's been over a month now since I stopped most of my meds including my birth control. No period...yet. I was sort of scared so I took a pregnancy test the other day (partially because of these surgeries and test - I didn't want to be pregnant during them). Was negative thankfully. But when will it start?

once this HIDA scan is done and I have the results then maybe we can start officially trying to get pregnant. However if I have to have my gallbladder removed then obviously that will come first. Is it bad to say that I wish my HIDA scan did show something wrong because then there will be a logical explanation for my symptoms and excess gas rather than it just being gas?!? I know I don't want surgery but I don't want these symptoms to persist....at least not on top of everything else I already deal with.

Can you believe I am still having antidepressant withdrawl symptoms?!? Nothing major just the dizzies now and then throughout the day. Tollerable but yet noticible. I bet it will be months before I am back to normal in that arena.

MS walk - how much did I raise?

2006-05-08T15:44:00.000-04:00

About $3000 myself. My husband raised $900 (of which 1/2 is a company match from his employer). My sister raised around $200. My friend Heather raised...I can't remember, $300? So my team "Helping Carrie Fight MS" raised over $4000 for the MS walk yesterday!!! That's just under $2000 less than I raised last year but still pretty darn good. This means I will again be a part of the millennium circle again this year and my team and I will be a bronze level award as a team who raises over $3000.

Walk was great! Sunny, not hot, not cold, perfect weather! Fun day. There were 13 people on my team this year. That's 6 more than last year!

Here we go HIDA

2006-05-08T09:45:00.000-04:00

Ultrasound was "normal" so now I have to schedule a HIDA scan. Nurse said she still has to show the doc my results of the ultrasound and then he will have to write up an order for my HIDA scan. Then she will MAIL it to me?!? Then once I get the order I have to call and scheule it. OK so I will be able to schedule it in a week or 2? Geeze

Had gallbladder pain ALL afternoon/evening yesterday. Have a gallbladder hang over today. Don't want to eat because I don't want the pain. Dilema dilema...

attack of the gallbladder

2006-05-07T18:35:00.000-04:00

This is major attack #2 and of course it happens on a sunday when I can't call or see my doctor. I am supposed to get my ultrasound results tomorrow and if they show no gallbladder problems I am supposed to go in for a HIDA scan where they inject you with radio active (gamma) material and use a radio active reader to scan your body and watch as the radio active material goes from your Liver to the gallbladder and down the ducts (could take many hrs for this to progress during the scan). If it does not reach your ducts quick enough or at all then there's a blockage of the gallbladder.

My luck my ultrasound will be normal but my HIDA will in fact show I have a problem. Thing is I don't know how much longer I can take this pain. It started, ironically, during the MS walk today. Got worse after I ate tortilla chips and salsa (yes I know stupid of me but I was hungry and that's all they had at the walk - ok besides apples and bananas). Went home, still in pain, took a 2.5 hour nap hoping it would be fine by the time I woke up. Its not. It's not! Ughh! OK it's been almost 7 hrs since the pain started. Not as bad as my attack over a month ago but still hard to bear and for so long.

Going to the ER won't help. IT's not life threatening...yet. I checked my temp and no temp. If I had a temp and or jauntice it could be life threatening but I don't. They would just send me home and say call my doctor in the morning for my ultrasound results. So that's more than 12 hrs away. When is this pain going to stop already? My mom said just to make myself puke to rid my stomach of the stuff causing my gall bladder to try and pump out the bile. I hate puking and don't want to do it. I don't have nausea or vomiting this time so no since in creating it.

Gas? Doctor in the urgent care a month ago said it could just be gas so try gas-ex and or a smooth muscle relaxer...I knew that was not the case but I did both just in case...no luck. Still pain. Besides gallbladder problems CAUSE gass! DUh! He should know that.

Well I will just frown and bear it (no grinning possible) until tomorrow. ughh!

My plan is if it is gallbladder problems I will see if my gastro and gyno will do one surgery to remove the gallbladder and my endometriosis since they are both laparasocpic surgeries.

Say Cheese!

2006-05-05T15:28:00.000-04:00

Wednesday I saw my gastroenterologist and he said exactly what I thought he would say. You need an ultrasound and a colonoscopy. Yipee. So I quickly arranged both to get them out of the way and done with. Yesterday I had the ultrasound (won't get results until Mon) and today, lucky me, I had the colonscopy. I'm becomming a pro at these. This was my 3rd. Dr said same issue with Crohns in the same places but redness all around including the illium. Redness could be from the "prep" as they call it but I call it night on the thrown. Did some biopsies but won't know pathologist findings for a few weeks. If it is about the same as 2 years ago he said no need to take meds but if it shows more chronic levels of inflammation etc I might want to consider steroids or asacol which are both safe while pregnant. Overall I just want to be as heathly as I can before I try and get pregant so if that means putting it off for some Crohns treatments then so be it. If my ultrasound doesn't show any problems with my gallbladder then he recommends I call and schedule some other test where they inject you with radioactive stuff and take x-rays to get a better picture of the gallbladder.

This time they knocked me out completely for the colonoscopy. In the past I was just sedated. I didn't want to be knocked out because I like to watch and see it on TV but oh well. Sleepy sleepy and when I wake all done. Some new anastheia they use that's quick and short and leaves your blood quickly so it's good for short procedures like mine. I was there and home in 1.5 hrs. Well at my parents anyway. I can't drive home from here due to the anastheia. Waiting for my husband to pick me up.

Round 3

2006-05-02T12:30:00.000-04:00

got an "appology" from the plant manager. Come to find the reason I didn't get any was because of a stupid title change a former boss made me do to a new made up title. Since corporate didn't recognize the title as being the same level as I was they didn't assign me options.

I wrote up a change to turn my title back to what it was which my boss said he would sign. My boss still assures me he will make sure I get my share of the options. In the mean time I also asked for a review since I haven't had one since I was kicked out of my former position when I got the final diagnosis of MS in 2004. (Previoulsy I was diagnosed with transverse myelitis). So it's been almost 2 years since a review or raise so I asked for both. We'll see how that goes.

Feeling OK. Still minor antidepressant withdrawal symptoms but almost unnoticable most of the time. Did I say my face is like a pizza? Breaking out terribly since I stopped the birth control. Still taking Lunesta but I should stop it soon... just don't want to let it go. I dont' want to go back to nights of lying there thinking and thinking and not being able to fall asleep while I listen to my husband's breathing change within 5 minutes of going to bed. Frustrating.

Tired yesterday but Mondays are usually harder for me. Sunday I just did house work but Friday and Saturday we helped my brother move from downtown detroit to an apartment closer to where we live (and his girlfriend lives). I think that moving wore me out Sun and Mon...my fault.

Tomorrow is the Gastroenterologist appointment. He will give me feedback on the x-ray which shows polyps on my colon and probably schedule a colonoscopy. Then I also have to discuss possible gallbladder issues with him. I wonder if he will assume I don't have gallbladder issues since I haven't had any pain since my urgent care visit...or at least not that bad. Hopefully he will schedule an ultrasound so I will know one way or another. I hate to do another test but ultrasounds are easy and harmless and I would rather know for sure one way or another.

Waiting for round 2

2006-04-28T13:10:00.000-04:00

Spoke to my boss (who is very compassionate and understanding and just an overall good guy). He agrees 100% I should receive the options and that I deserve them because he knows how good of a worker I am. He again said he will talk to his boss and if that doesn't work his bosses boss who broke out who gets options and how many. He said if that didnt' work feel free to contact his bosses boss myself

In fact I know the bosses boss because I worked with him in Mexico and his brother is my urologist. I ironically just saw my urologist on Monday when I was reeling from the lack of option award and when the urologist walked in he said how are you and I said I have a bone to pick with your brother....explained why...and he said well you give him a call and tell him I said you deserve it...joking of course but it was funny.

So I know my boss is busy and his boss is probably too and I know how something like this is not as important to them as other things so I will give him a week. If no response I will follow up with him again and ask for a deadline.

I told my boss I was very sensitive to this issue because I feel like I was being burned again by my company and that I took it personal and felt it had to do with my work/health situation. Wanted to make it clear that I felt descriminated against. I didn't have to bring out the ADA docs I put together....not yet anway. As long as he agrees 100% I should get options then I think that's worth more than the law in terms of getting action sooner than later in court.

Still have antidepressant withdrawls. little bit dizzy here or there but not all day and not everytime I move my eyes. Much easier to tolerate now. Still slight headache. Still taking Lunesta...might quit it after I see the gastroenterologist about the colon polyps thing.

Results on colposcopy #2 was normal. No displaysia. See you in 6 months for another pap. Yipee!! I am displasia free (I think). So no gyno for 6 months. No urologist for 1 year.

Interesting fact I learned from my urologist this week about Elmiron. It is sort of like a blood thinner so if I am having any type of surgery I should stop taking it 1 week prior to surgery to avoid any blood issues during surgery. Nice if they told you that when they prescribed it or if it was on the bottle huh? I have already had 1 surgery while on it but I was smart enough to know by reading the small print on the prescription that it can thin the blood so I told the doctor before the surgery and they tested my blood to see how thin it was.

Doctors yet to see - gastroenterologist next Wed, Dentist in a few weeks to have a tooth removed and a cavity filled, neuro I think not until June.

Lets get ready to R-U-M-B-L-L-L-L-E

2006-04-26T21:09:00.000-04:00

Just as the 2 year old wound was healing it got riped right open with one swift lie. You see as part of my compensation I get stock options. They are worth a lot! I plan to pay off my mortgage in the next 5-10 years by cashing them in so they are very valuable to me and my future.

Last week they handed them out. I did not get an option package (the award letter comes in a package...know at work as the infamous option package). I thought it was because my boss took a couple of days off over the spring break so he just didn't have time to give it to me. So last Friday I approached him about it. He said he wasn't in charge of passing them out and that the plant manager was this year. We discussed how I have received options for the last 5 years and he agreed if I got them last year I should get them this year. He said he would call his boss and maybe his bosses boss at corporate headquaters to see why I didn't get any.

Since he has been tied up with customer visits since Friday I took it upon myself to talk to the plant manager to see if he knew anything about it. He said corporate cut back big time this year on who did and didn't get them. He said they cut out a lot of positions that normally got them in the past. I specifically asked if all the (insert my job title here) got options this year and he said no...I don't think any of them did. As soon as he said that the wound opened. LIE outright LIE. I just needed proof. So I went and asked 2 people with the same exact job title and pay level as me if they got options. They said yes. I asked someone above me if they know if all the people in my level got them and this person said yes to their knowledge. I even heard people in a level BELOW me got the options. That made me so mad I wanted to Cry...so I did a little.

COMPENSATION DESCRIMINATION
That's what it's called. I am being descriminated against because I can only work a shortened work week due to my Multiple Sclerosis (and other illnesses). I do the same job and have the same title as about 6 people in my plant (and who knows how many worldwide in a $10billion company) but I am probably the only one not given any options. In fact many will tell you I get more done and am a better worker in my 6 hours a day then at least 1-2 of the other people in my title at my plant do in a 50 hour week.

Research I did. here is what I learned. First is the web page I found it on and then the areas I felt applied to what was happeneing. I plan on bringing this to work tomorrow as amunition as I begin to fight the ugly battle.

http://www.eeoc.gov/facts/fs-epa.html
Facts About Compensation Discrimination
Compensation discrimination in employment is prohibited by the Equal Pay Act of 1963, Title VII of the Civil Rights Act of 1964, the Age Discrimination in Employment Act of 1967, and Title I of the Americans with Disabilities Act of 1990, all enforced by the U.S. Equal Employment Opportunity Commission. Collectively, these statutes require employers to compensate employees without regard to race, color, religion, sex, national origin, age, or disability.
The law against compensation discrimination includes all payments made to or on behalf employees as remuneration for employment. All forms of compensation are covered, including salary, overtime pay, bonuses, stock options, profit sharing and bonus plans, life insurance, vacation and holiday pay, cleaning or gasoline allowances, hotel accommodations, reimbursement for travel expenses, and benefits.
http://www.eeoc.gov/types/epa.html
Title VII, ADEA, and ADA
Title VII, the ADEA, and the ADA prohibit compensation discrimination on the basis of race, color, religion, sex, national origin, age, or disability. Unlike the EPA, there is no requirement under Title VII, the ADEA, or the ADA that the claimant's job be substantially equal to that of a higher paid person outside the claimant's protected class, nor do these statutes require the claimant to work in the same establishment as a comparator.
Compensation discrimination under Title VII, the ADEA, or the ADA can occur in a variety of forms. For example:
An employer pays an employee with a disability less than similarly situated employees without disabilities and the employer's explanation (if any) does not satisfactorily account for the differential.
It is also unlawful to retaliate against an individual for opposing employment practices that discriminate based on compensation or for filing a discrimination charge, testifying, or participating in any way in an investigation, proceeding, or litigation under Title VII, ADEA, ADA or the Equal Pay Act.
Statistics
In Fiscal Year 2005, EEOC received 970 charges of compensation discrimination discrimination. EEOC resolved 889 compensation discrimination charges in FY 2005 and recovered $3.1 million in monetary benefits for charging parties and other aggrieved individuals (not including monetary benefits obtained through litigation). http://www.eeoc.gov/policy/ada.html DISCRIMINATION SEC. 12112. [Section 102] (a) General rule. - No covered entity shall discriminate against a qualified individual with a disability because of the disability of such individual in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment. (b) Construction. - As used in subsection (a) of this section, the term ``discriminate'' includes- (1) limiting, segregating, or classifying a job applicant or employee in a way that adversely affects the opportunities or status of such applicant or employee because of the disability of such applicant or employee;
http://www.ada.gov/q%26aeng02.htm

Q. What practices and activities are covered by the employment nondiscrimination requirements?A. The ADA prohibits discrimination in all employment practices, including job application procedures, hiring, firing, advancement, compensation, training, and other terms, conditions, and privileges of employment. It applies to recruitment, advertising, tenure, layoff, leave, fringe benefits, and all other employment-related activities.
http://www.dol.gov/compliance/guide/503.htm#who
Basic Provisions/Requirements
Under Section 503 and its implementing regulations, covered employers with federal contracts or subcontracts must take affirmative steps to employ qualified individuals with disabilities. This obligation covers the full range of employment and personnel practices, such as recruitment, hiring, rates of pay, upgrading, and selection for training. All covered contractors and subcontractors must also include a specific equal opportunity clause in each of their nonexempt contacts and subcontracts. The regulations provide the required language for this clause.
http://www.dol.gov/dol/allcfr/ESA/Title_41/Part_60-741/41CFR60-741.20.htm
Rehabilitation Act
41 CFR 60-741.20 - Covered employment activities.
Section Number: 60-741.20 Section Name: Covered employment activities.
The prohibition against discrimination in this part applies to the
following employment activities:
(a) Recruitment, advertising, and job application procedures;
(b) Hiring, upgrading, promotion, award of tenure, demotion,
transfer, layoff, termination, right of return from layoff, and
rehiring;
(c) Rates of pay or any other form of compensation and changes in
compensation;
(d) Job assignments, job classifications, organizational structures, position descriptions, lines of progression, and seniority lists;
(e) Leaves of absence, sick leave, or any other leave;
(f) Fringe benefits available by virtue of employment, whether or
not administered by the contractor;
(g) Selection and financial support for training, including
apprenticeships, professional meetings, conferences and other related
activities, and selection for leaves of absence to pursue training;
(h) Activities sponsored by the contractor including social and
recreational programs; and
(i) Any other term, condition, or privilege of employment.

41 CFR 60-741.21 - Prohibitions.
Section Number: 60-741.21
Section Name: Prohibitions.
The term discrimination includes, but is not limited to, the acts
described in this section and Sec. 60-741.23.
(a) Disparate treatment. It is unlawful for the contractor to deny
an employment opportunity or benefit or otherwise to discriminate
against a qualified individual with a disability because of that
individual's disability.
(b) Limiting, segregating and classifying. Unless otherwise
permitted by this part, it is unlawful for the contractor to limit,
segregate, or classify a job applicant or employee in a way that
adversely affects his or her employment opportunities or status on the
basis of disability. For example, the contractor may not segregate
qualified employees with disabilities into separate work areas or into
separate lines of advancement.

(2) It is unlawful for the contractor to deny employment
opportunities to an otherwise qualified job applicant or employee with a disability based on the need of such contractor to make reasonable
accommodation to such an individual's physical or mental impairments.
http://www.eeoc.gov/abouteeo/overview_practices.html
Titles I and V of the Americans with Disabilities Act
The ADA prohibits discrimination on the basis of disability in all employment practices. It is necessary to understand several important ADA definitions to know who is protected by the law and what constitutes illegal discrimination:
Individual with a Disability
An individual with a disability under the ADA is a person who has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment. Major life activities are activities that an average person can perform with little or no difficulty such as walking, breathing, seeing, hearing, speaking, learning, and working.
Qualified Individual with a Disability A qualified employee or applicant with a disability is someone who satisfies skill, experience, education, and other job-related requirements of the position held or desired, and who, with or without reasonable accommodation, can perform the essential functions of that position.

The ride is coming to a hault. Please keep your arms and legs in at all times

2006-04-23T13:14:00.001-04:00

Getting less dizzy. Went out last night bar hopping in detroit and I didn't want it to kick back in so I took a very little of my effexor. I sprinkled about 1/8th of a pill in some OJ but I think only 1/2 that got down. Rest stuck to the bottom of the glass. Today I am ok. About 10% dizzy. Still have the etch-a-sketch in my head which makes me feel like an idiot calling it that, but if the shoe fits. Pretty good time last night. Has been a while since I have been dancing or around the singles scene. Funny story, my one friend was so drunk she was flirting with some young guys. Her husband was right there and didn't care because he trusts her 100% and she won't cross the line. He went over to talk to her and then came back shortly there after and said " I had to come back becacuse I don't wan to cock block my wife" Was funny as heck. More funny if you knew my friends and the young ones she was talking too.

Yesterday I was also able to work in the yard most of the day raking leaves and pulling rooting acorns out of the ground. WE have 100's of large tall old oak trees in our yard and didn't do much clean up in the fall so now we have a mess. Got most of it all done. Since we don't have sod yet, we will leave the rest for the landscape company that will be hauling in more topsoil and raking it all around.

Today will be tree shopping and grocery shopping. Pretty gloomy here.

Monday is the urologist. I just got a letter from him as he has been promoted to the head of urological reseach at Beaumont Hospital. He's working on a lot of reseach trials for Interstitial Cystitis. I only qualified for one of the 10 or so studdies but will pass. Don't need another reason to see a doctor or nurse more often then I already do. My urologists brother is the vp of my company. Small world. I probably wont have much to say to him as I have a good case of IC with my drug, elmiron, pretty much making me 95% symptom free and I dont' watch my diet anymore. I'm one of the lucky ones as I think elmiron only helps like 20% of IC patients as well as it helps me.

Did I say Effexor withdrawal sucks?

2006-04-20T10:23:00.000-04:00

Yesterday I lied....it wasn't better. It just took more time for it to come back full force. Still had the shakes, sweats, chills now, headache, nausea, dizzyness (with the etch-a-sketch).

Saw my shrink thought he could lend some light on why my withdrawal symptoms are so bad. Guess what...he didn't. He kept asking me, well how long is this all going to last? What!?! Dude don't you prescribe this junk for your patients and don't they sometimes go off it. Haven't you seen this before?!? He pulled out the PDR and looked it up. I warned him it would downplay the withdrawal side effects as the drug companies and doctors usually do. Yep it said 3 weeks taper is good and you should have no withdrawal side effects. Well heck that's what I did and I sure don't call this NO withdrawal side effects!!

So that was no help. Went home....tried relaxing. WEnt to bed praying it would be better in the morning. Couldnt' sleep though even with Lunesta. By 12:00 I got up and broke down. Opened an effexor pill and sprinkled the tinest amount into a glass (maybe 1/8th of a pill) and filled it with water and drank it down. I felt like I was giving alchol to a recovering alcholic....guilty.

This morning I still have the dizzies but they are better. However due to my lack of sleep my MS symptoms are worse and headache is unbareable. I couldn't hack another day at work trying to put up with this mess so I am working from home today (in between naps).

No doctors appoints until Monday...yipee!

Tilt-A-Whirl is fun only at the fair

2006-04-19T11:21:00.000-04:00

Get me off this RIDE!

This dizzyness is better but still constant. Last night at the hair dresser it got so bad I was shaking and sweating for like a 1/2 hr. By the time I got home I was so stressed out from dealing with it all day I broke down crying -of course partly because of the emotional side effects from the withdrawl which seems to start at that very moment. Took to Aleve and went to bed by 8:30.

Funny thing I noticed while trying to fall alseep. I have an etch-a-sketch in my head. When I move my eyes left or right I get this strange sound in my head like someone tilting an etch-a-sketch (sand moving). Its at that time the dizzyness happens...looking left to right only and not up and down. Look left = 2 shakes of the etch-a-sketch. Same if I look right. Sometimes just one shake. I only notice this when my environment is quiet. Still notice it today. What's happening in my brain causing this funny thing? I see the shrink today maybe he will know but then again so many doctors downplay or ignore the withdrawal side effects of antidepressants that It won't suprise me if he acts like he doesn't know what I am talking about.

Dizzyness is getting worse today as the day progresses. No bad hotflashes....so far. No nausea...yet. Headache though. How many more days of this huh?!? I am supposed to go to the pistons game tonight but not sure if I can watch them move back and forth across the court.

Effexor Withdrawl has officially kicked in!! and it sucks!

2006-04-18T11:00:00.000-04:00

Dizzys! Jolts! Electrical impulses! Did I say Dizzys?!?

I knew it would take 2 days after I finished it that it would all start and here it is 2 days after my last pill and wham! Ughh! It sucks. Driving to work sucked, using the computer sucks, walking sucks it all sucks. I get this dizzy feeling when I look one place or another and it causes me to blink hard to clear it all away but happens again shortly there after. I even get cross eyed at times. Walking is difficult as the dizzyness is not only in my head but then traslates to my feet and I have to touch things when I walk for balance. Then there's the hot flashes...don't remember having these before. Geeze even taking a deep breath causes the dizzys. Then when I am still and am able to hold the dizzy's at bay there's the never ending dull headache. I took caffine but when am I thinking...my body wants Effexor not caffine.

So I am going to tough it out. I informed my boss of what I am going through in case I fall or look like I am drunk or keep shaking my head or squinting my eyes to get it to stop.

How long will this last? I remember going through it 3 years ago when I stopped taking Sarafem (fancy name for prozac). I was on it due to Lupron which caused depression when I was on it. I think it lasted a week or 2 but got better each day. I will tough it out knowing it's only for a short while....but I still have the right to complain about it...

See dentist today....haircut after that (I need it)

Oh yeah....I had my 2nd culposcopy yesterday. Dr said the type of HPV I have is not the kind thats at risk for turning into cervical cancer. He also said the latest school of thought is that if it's not the type of HPV to turn into cancer then don't do anything just monitor with a Pap every 6 months. He did a Biopsy to be sure again that it's not at risk for turning into cancer and if those results come back the same that it's not then nothing for 6 months...just a pap then. No more cryosurgery or anything else. Yippe. Funny story,...when the doctor came in to do the procedure I said to him "we have to stop meeting under these conditions"...he got a chuckle out of it and so did the nurse. Most HPV viruses resolve or go away on their own and that is what he expects of mine. HPV is the most comon STD and pretty much everyone has had it at one time but there are over 100 strains of it and only a small # of those lead to cervical cancer.

Despite Last week - things going good

2006-04-17T12:56:00.000-04:00

So last week was a health week from hel* and despite all that and the fact that I am finally done with my antidepressants (effexor) I am doing good...no Great!

Saturday I went shopping with the sis. She's not by any means a fashionista...in fact she's a fashion fopa. That was a triamph for us both in first trying to get her to try on things she didn't like and secondly getting her to try on color! the rest of the day was spent resting as that much walking and standing wears me out for about 24 hrs.

Sunday did house chores (avonex free might I add) and it was great. Had a lot of energy and got a lot done. Funny how an avonex free day can be good even if it involves only house work. Gosh I would have never thought 5 years ago I would think doing house work all day meant a good day. Had easter dinner with the 'rents. Good times.

Today feeling good for a monday (mondays are hard for me always). See the gyno in a bit for my culposcopy...ughh. then will go home and finish laundry.

No more Effexor and it's not bad at all today. Not getting the dizzies at all. Proabably will tomorrow as my body notices the decrease in dosage (or there lack of today) 2 days later.

Seeing the dentist tomorrow for my 6 month check up. Not expecting anything big. I have almost perfect teeth (thanks to my good teeth genes - I guess that's the only good health I have...my teeth). However I did skip out of an appointment to have a wisdom tooth pulled so I will probably have to schedule that soon.

I am going to Lose IT!! (insert scream here)

2006-04-13T12:09:00.000-04:00

Just got a call from my gyno. I just had my 3 month pap test a couple of weeks ago to check to make sure they cryo surgery worked. Well guess what. The test results were abnormal! Lucky me! I have a health devil that follows me I have decided. This means I now have to go back for a culposcopy again where they use a microscope like thing to look at the cervix and then they cut out a piece for a better biopsy. That causes cramping (remember the story on my drive home in the snow and the cramping sucked) and 3 weeks plus of bleeding and such. Then it takes 10 days for those results to see what abnormal means. My guess is it means they didn't get rid of all the dysplasia tissue the first time and I will need something line a cone cut thing (can't remember the word). It's what they did before they had cryosurgery. They just cut out the part of the cervix that has the dysplasia - big chunk.

Ughh! What did I do to deserve all this?!? Can't someone else take some of this mess off my back so I can have some relief from having to see so many doctors!?!

Funny thing, I am 5 days away from being completely done with my antidepressant. I am on 1/4 the usual dose right now and I am not sad or depressed about all this at all. More frustrated. I expect the worst so when it happens I don't get depressed just annoyed I have to go to all these darn appointments and darn tests. Actually I have been in pretty good spirits since I started tapering off my antidepressants. I think over the years I have gained my own coping abilities and strength that make me able to meet these challenges without losing my spirit. They remind me I am pretty strong you know.

PS thanks to all the well wishers and supports out there!

Colon Polyps?!? Geeze what's next!

2006-04-12T17:31:00.000-04:00

I got a call from the doctor I saw a couple of days ago about the potential gallbladder attack. He said he had a radiologist review my x-ray and it appears I may have colon polyps in my flexor colon (where ascending colon meets the transverse colon on my right side just under the liver). I thought OK go figure right?!? However that doesn't explain my pain since polyps usually do not cause pain so I still need to get checked for gallbladder issues. Now I guess I need another colonscopy. I think my last one was Nov or Dec 2004. Since I already have a appointment with my gastro on May 10th now I just have one more reason to see him. Lucky me!

So what if I do have polyps? I read on the net that chances are it's not cancerous. However because I also have Crohns, Crohns causes an increase in colon cancer I think something like a 20% greater chance for every 5 years you have Crohns. I don't know of anyone in my family who has had colon cancer or polyps but I have to check with my mom to confirm that. That would increase my risk.

My guess is in May I will have a ultrasound of my gall bladder and probably my colon. Then see the doc and then schedule a colonscopy after those results and then see the doc again in June. What is this going to do for my baby plans? Should I put it all on hold? Should I start my meds up again? I don't want to. Just play it by ear for the next month I guess.

Ugg such is life...for me.

Gallbladder attack

2006-04-10T17:44:00.000-04:00

I went to Target during lunch and picked up a hotdog and pop on my way out for a quick lunch. I got back to the office, ate it and within 10 minutes or so I was in extreme pain. I don't think I have had pain this bad for this long. I was sweating. Ughh. I tried moving around. Thought it might just be gas but not this bad of pain. Then I got pain in my right shoulder. I checked the net and saw gallstones. Oh boy my family has a history of that. In fact my uncle just got his gallbladder removed a couple of weeks ago. My mom had her's removed after I was born. My grandmothers both had theirs removed at a young age.

I called my mom in pain asking what it felt like. She described what I felt so I asked her to pick me up since I couldn't stand up or walk it was so painful. While she was in route I called my doctor to see if I could get in. They said so to go to their urgen care clinic. So thats where my mom took me. 30 min later and still in such awful pain I didn't want to stand I saw a doctor. He said it did sould like gallstones. He did the only 2 quick tests they can do at the urgent care clinic. Urine test and x-ray. Both were normal...well actually my x-ray showed a large amount of gas in my large intestine...which is yet another symptom of gallbladder problems. His advice was to see my gastroentrologist to get more conclusive tests done and in the mean time take some gas-x. He offered a shot of toradol for the pain but I passed (I have some at home). He sent me on my way after that.

By then the pain was going away so I was ok with it. I called my gastro and can't get in to see him until May 10th. Yep that's one month away!! Let's hope I don't get another attack before then. I must cut out fatty foods (bye bye taco bell), ice cream and other fatty dairy's (bye bye starbucks).

Just what I need huh. Well really I almost expect it to be the worst case scenario based on my medical history. SO I need my gallbladder removed. It's a simple laparascopic procedure these days. In fact I already decided if that is the case then I will line up my gynocologist to go in at the same time to remove my endometriosis. One stop chop! Ha ha I crack myself up! Chop!

Funny thing, when the doctor reviewed my list of illness and I reminded him he was missing one, interstitial cystitis, he was stunned, as many doctors are when they see a 30 year old with 4 chronic illnesses. Then he looked at my meds and said half jokingly, well are you taking enough effexor?!? (antidepressant). I chuckled and said actually I am going off it so I can try and get pregnant. Funny thing the first thing he would think of is how depressing it could be having so many illnesses. Funny thing how time is the best antidepressant there is next to friends and family.

1/4 depressed - Avonex free!

2006-04-10T10:52:00.000-04:00

I am tapering of my antidepressant (Effexor XR) and last week I took 1/2 my usual dosage (75mg). This week I am on 1/4 of my usual (37.5). Doing OK so far. The withdrawl is not as bad as I thought it would be. Get the dizzies, lightening in the brain and night sweats but they are slowly fading away. yeah!

Did not take my avonex shot and yesterday was great! I get one day back a week now! No more avonex no more useless sundays!

After I am done with the effexor taper I will start going off my lunesta sleeping pill. I think that one will be cold turkey.

I am also done taking the patch birth control (ortho evra). Lets hope my endometriosis doesn't flare up otherwise I will have to have laparascopic surgery...again. Per my gyno.

I have to admit. I do feel a bit more tired than usual this past week. I hope that doesn't stick.

This weekend my husband and I bought a motorcycle. 2002 Honda Valkaryie. It's 1500cc's and 6cylinder. We pick it up tomorrow. What fun that will be! We had one 2 years ago when we lived in Fargo but sold it before we moved (against my wishes). Now we have a newer one. Weekend trips to who knows where just for the fun of the ride. I'm excited

The MS walk is a month away. My goal was $7000 for my team but I have only raised about $1700 so far. I better get my sales pitch on. I still need to go desk to desk here at work and beg for money. That's what brought in the big $ last year. Ugh no one likes to do it and no one likes to say no to the person. But that's the best way to raise funds....ask face to face.

No big plans coming up other than trying out the new bike. Feeling pretty good these days compared to Dec-Feb time frame. Excited for the summer!

I've changed my mind on Tysabri - for now

2006-04-03T12:29:00.000-04:00

I read the FDA has asked for 90 more days to review new data related to the tracking of future patients on Tysabri before making a final decision on Tysabri. This means it will be July before it's approved possibly. Add a few more months for the insurance companies to make a call on if they will or will not pay for it, and we are now talking about October before I will be able to take it.

I don't want to wait that long. I've decided not to go on Tysabri now and instead go off my meds and try and get pregnant instead of going on Tysabri for 6 mnths first as my doctor recommended. The push to October is one of the reasons. Another is I just want off my drugs. I took Avonex this weekend and was just dead all day yesterday. Worse than I have been in a long time. I couldn't sleep well last night either and am still feeling it today. I don't want to take Avonex anymore let alone another 6+- months.

Another reason is I'm not getting any younger. I am 32 if I wait 6 months, then have Tysabri for 6 months and then try and get pregnant which could take a year in itself given my endometriosis, I could be 35 before I give birth. I don't want the added risks of pregnancy that come with age. The Perinatologist I saw said to get pregnant right away due to added risks of age.

So I see my gynocologist today for a re-pap - 3 month check up after I had the cryosurgery to remove the mild dysplasia cells on my cervix. I will talk to him about my decision then. And then tomorrow I will call my neurologist and tell him of my decision. After that, assuming neither added any more feedback which might change my mind, I will begin my drug withdrawl process. I have a 2 week pack to go off my antidepressant (that one will be the worst one I know). I will no longer take Avonex (althoug I have 5 shots in the fridge). I will aslo have to stop my sleeping pill (that will be a bummer). That's about it. I will still take my Elmiron because it won't cause harm even if I needed it while pregnant (although I plan on stopping it when I find I am pregnant). Oh wait....lastly I will need to stop my birth control patch...ha ha. Could be a problem with getting pregnant if I don't stop that.

So lets see that means we can start trying in about a month I will assume. May. I nervous and excited. My husband and I agreed we are financialy and emotionally ready for a child. Plus our house work will be done by then (sod, painting etc) so next year we will be all set.

Blepharitis

2006-03-30T12:55:00.000-05:00

I have Blepharitis. Per the government web sites:

Symptoms of either form of blepharitis include a foreign body or burning sensation, excessive tearing, itching, sensitivity to light (photophobia), red and swollen eyelids, redness of the eye, blurred vision, frothy tears, dry eye, or crusting of the eyelashes on awakening

Warm compresses should be applied to the lid to loosen the crusts, followed by a light scrubbing of the eyelid with a cotton swab and a mixture of water and baby shampoo. Because blepharitis rarely goes away completely, most patients must maintain an eyelid hygiene routine for life. If the blepharitis is severe, an eye care professional may also prescribe antibiotics or steroid eyedrops.

Basically the doctor said baby shampoo and water mixed up 1:5 ratio and apply with Q-Tip 2 times a day. Will have to do this for the rest of my life because it never really goes away 100%. Ughhh. Well at least it's not another pill. Guess I will go to the drug store after work to pick up my baby shampoo and a container to mix it in.

He said I could keep applying the aquaphor at night if I think it help. He said it can't hurt.

He also said it could take 3-4 weeks to clear it up with the baby shampoo treatment but I will have to continue doing it to keep it from coming back.

Just add another condition to the list I guess. Well I guess it could be worse. I mean it's really not that bad. I guess I expected worse given my luck!

Stressms

2006-03-29T13:04:00.000-05:00

The past 2 days have been a reminder that I can't handle stress like I used to. I had this thing at work I had to get done in a short time period under a lot of stress. It started Friday and I knew coming in Monday I would be very busy working on it all day. Add the fact that I pushed a bit too much on Sunday and I ended up feeling like crap on Monday. I went home early and decided to sleep and try and do some of the work from home later that night. I worked on it 2 hrs from home but didn't get as far as I expected so Tuesday the stress continued. Again Tuesday I was beat. Eye twitching legs felt like cement, very tired etc. I pushed thorugh it all Tuesday and finished the project. By the time I went home I was beat. Rested/slept the rest of the night. Today is Wednesday. not as tired today. Maybe because that stress thing is not hanging over my head today. Why can stress make symptoms worse. That sucks! I like stress sometimes. It makes the day go by faster but when you feel like crap, no stress can make the day go by faster.

There's a fine line of stress level I can handle. Too much on my plate and the stress builds and then I worry about it being too much which adds to the stress. Such as cycle. I can't win.

So tonight I will take it easy again. Need to catch up on rest to recover from Mon and Tues.

Got a new book and this time it's not about MS or any of my illnesses. Its the great infuenza. Big book about 500pages about the flu outbreak in 1918. It killed more people in a short amount of time than any other illness or disease. Estimated 500 million people worldwide died from it in a 2 year time period. Only on chapter 3. Chapter 1 is history of medicine. Chapter 2 is how medicine in the us was lagging in the 1800's. chapter 3 so far is how medicine began to catch up to europe in the late 1800's.

Well I broke down and made a doctors appointment to get my eyelids checked out. They are red, burning, itching and still a bit swollen. The aquaphor has helped eliminate most of the flakeyness but the burning is awful. Can't stand it anymore. I just want to rub and rub. I have an appointment tomorrow morning with my regular internal medicine doctor. Figured it would be easier to see him than a dermatologist. We'll see what he says.

"forgot" avonex

2006-03-27T12:24:00.000-05:00

Saturday was an ok day until it started raining. We went to a local business expo for something to do and then had to go up north to pick up some Amish furniture we ordered. It started raining on the way back and we stopped to put tarps over the furniture in the truck bed. The tarps did not want to stay on. The rings on the tarps ripped off and then it started flapping. I think we stopped 5-6 times on the 2.5 hr ride back home. It was very frustrating. We eventually used duct tape (mans best friend for all issues right?). Lots of it. First duct tape didn't hold long enough so next time around my husband wrapped it around and around and around and it finally held. By the time we got home we were grumpy, hungry, wet, dirty and pissed. After that I didn't want to take my shot so I didn't. Told myself I would take it in the morning but in the morning I felt so good I didn't want to ruin how I felt so I skipped it.

I was so full of energy I did all sorts of things around the house then went shopping and returned some things. I was out and about all day long. By dinner I was tired but I went to my parents and my brother cooked us an awesome dinner.

Today I am paying the price. My legs are like strung out rubber bands. They dont' want to bend easily and they are tight and heavy. I'm extra tired. My own darn fault for not pacing myself yesterday. Other than that, I have been feeling OK lately.

Husband is out of town until late Wednesday night. That will make the week lonely but then again I like alone time....just not that much.

Waiting for Tysabri final approval and then I will start taking to my insurance company.

Do I have Seborrheic Dermatitis?

2006-03-24T13:04:00.000-05:00

It started almost 2 weeks ago. I woke up on Saturday with my left eye almost swollen shut and my right eye also swollen but not as much. They were red, burning, itching and scaley. Putting anything on them like my eye cream burned more. After about 2 days the swelling went down the but flaking and redness and itching did not. I started using Aquaphor (like petrolum jelly) on them at night which helped a lot but not 100%. After it seemed to be getting better I stoped the Aquaphor and wham a few days without and its all back. Of course I started searching the net. The closest thing I could find was Seborrheic Dermatitis which is very similar to dandruff but can occur on the eyelids and many other places. I also found its common for people with diseases of the neurologic disorders HA that applies to me!!

Treatment is anti dandruff shampoos (on the eyes?) or steroid creams? So should I go see a dermatologist? Ugh more doctor appointments. Maybe I will put it off until they are swollen shut! I think I will be fed up with it by next week if it's not better or gone. I did the Aquaphor again last night and they are less itchy but still red and burn with eyecream.

It could be my make-up so I recently bought new mascara, eyeliner, eyecream, and powder (same kind I always new just new containers of them). It didn't help. I haven't washed my brushes yet (weekend project) I use for my blush and powder. No changes to my normal cleaning or make-up program for many many months (years maybe). What else could it be? Psoriasis (sp) nope, roseachea (possibly was told I had it when I was 18 and was on treatment for it then), bacterial infection (possibly), who knows.

Maybe next week I will make an appointment. Until then I keep it to myself because I don't want to complain of yet another symptom or illness to anyone. (they got to be sick of that already).

National MS Society fund raising

2006-03-17T12:04:00.000-05:00

Since it's National MS awarness week, I used this week to inform family, friends and co-workers about MS. I created my own MS fact flyer and attached it to the e-mails along with a request to support me for the MS walk this year which is May 7th.

I already raised $600 in less than a week of trying. My goal is $7000 as a team. I also gained some additional team members. My friend Heather (who couldn't make it last year due to my other friend's baby shower) 3 co-workers and a co-worker's daughter. Quite the compliment!

MS symptoms managable this week. no major complaints so far. Just cramps from endometriosis. Pain meds and those portable heating pads is what I use and it makes it more tolerable.

Tysabri decision - well I think I will do it. Want to talk to the husband one more time this weekend and then will call my doctor to let him know next week. the issue might be getting my insurance to approve it. Maybe I can start making calls on it.

No major plans this weekend. Play it by ear.

Weekend was great. Book I don't recommend

2006-03-14T21:02:00.000-05:00

Friday I rested/slept all day and most of the night. By noon on Saturday I was feeling much better so my husband and I went to the detroit science center (wheelchair in toe). We also saw an Imax on the Nile River. Did a few more things which included shopping and pastry eating. Sunday it was so nice outside we went for a long walk (long in my mind). My dog and I were beat by the time we were done so we took a nap. Later I went and visited the niece and nephew for some simple fun (hop scotch and follow the leader). Monday and today were average. How strange things can be so bad one day and a little rest a little luck and you are back to average.

I recommend the book Curing MS but here's another one I bought the same day that I highly do NOT recommend. It's called Understanding MS by Melissa Stauffer. First it's short 87 pages of text and then a bunch of "resources" which are useless really. Also there seems to be in my opinion a lot of facts that are wrong or misrepresented. For example she claims Fatigue and Pain are symptoms that usually only show up in later stages of the disease and that Fatigue has not been biologically tied to MS but is rather pshychological. I know what you're thinking. This book was probably written in 1996 but no. The whole reason I bought this book is because it was just released for the first time in February 2006. I think it's the most recently released book on MS and it is one of the most backwards books I have read. I am insulted by some of the facts really. Besides all this, there is way too much medical jargin the average person would get confused by. I tried hard to follow her facts and explinations of APC's and CAMS but really I just didn't care enough to understand it in that much detail. The level of detail that Curing MS explains is much better and easier understood.

MS it's MS awareness week. Fact about MS...since the eradication of polio, MS is the leading cause of disability in young people.

MS lesions of the spine and brain stem have a higher chance of being more diabling than brain lesions.

Tysabri or not Tysabri

2006-03-10T17:30:00.000-05:00

I was pretty excited Tysabri got a recommendation by the FDA committe to go back on the market. Here's my 2 cents for the nay sayers

1) just cause it's approved YOU dont have to take it
2) if it did not get approved do you know what that would mean to MS research and drugs as we know it? It would be considered too risky and the funding might not be there as much
3) if it did not get approved do you know what that would mean for drug R&D as a whole regardless of the illness? It would be more strict, more costly and therefore less overall benefit
4) If a drug has side effects or issues it is first up to the FDA to make sure they are investigated properly and if approved noted properly on the packaging. Second it is up to your doctor and pharmacist to explain those risks to you. Lastly it is mostly up to YOU to understand those side effects and risks. Granted those phamplets you get are wordy and such but its there for you not the pharmacist to know about what you are taking. Also I know my doctors almost never discuss side effects or risks with me (slackers) but I do read the inserts to all my meds and those things the pharmacy's give you will a summary.

OK off my soap box. My doctor is a huge proponent to Tysabri and was deeply involved in the studdies. He has told me about it since the first day I saw him over 3 years ago. He can't wait for me to go on it. However I told him that I wanted to try and get pregnant this year and don't want to go off avonex, on tysabri and quickly off it to try and get pregnant. That was our discussion 3 months ago.

I just saw him again yesterday and his strong recommendation "if it were me, I would..." hold off getting pregnant, go on Tysabri for 6mths, then go off tysabri and a month later try and get pregnant. That puts my schedule off about 8 months. His reasoning is that Tysabri shows sings of benefits long after its out of your system and could help keep me in check until I get pregnant and the Estirol kicks in. Estirol is a drug produced by the placenta that seems to help MS patients during pregnancy. It's currently being tested as an oral treatment for MS.

My husband agrees with him but I told him I want him to read all the data on Tysabri so he can form his own opinion on it prior to us making or final decision. He agreed. I am on the fence. A small % of me is scared of the risks, but I did my research. I read most of the 148 page report that was presented at the FDA committe review. I drilled my doctor about it. I read the uneducated press stories that get the facts all messed up. I know it's benefits and risk and feel the benefits far outweight the small % of risks. I think I will go forward with my doctors recommendation but might re-read some of the report to be sure.

Healthwise, I have learned what I thought was flares were not flares. I am bringing on these new symptoms or worsening of symptoms myself due to stress, lack of sleep etc. For me it's tricky to say if something is truly a exacerbation or not because I have/had a large lesion in my neck/spine which has caused permanent damage so I will forever be experiencing a waxing and waning of my symptoms if I am stressed, tired, hot, get a cold etc. He says I am brining it on myself and possibly quite true as my stress level at work coincides with my increase in symptoms.

That leads me to today. I forgot to take my antidepressant yesterday and was up most of the night with the sweats and nightmares. I got little sleep and therefore laid in bed this morning for 1hr trying to convince myself to get up and go to work. I eventually made it in but then the e-mails and visits started and the stress all came back and it was just too much. I didn't want to spend another weekend recooperating from a stressful week at work so that I could turn around and do it all over againg. I have spent the last 3-4 weekends at home in bed or on the couch resting up due to a stressful week. No more. Not today. I left work. Before I left I sent my boss a long e-mail basically saying I was too stress out and had to much work on my plate and it was causing my MS symptoms to get worse. He hasn't replied yet (I just checked). I spent almost all day sleeping and I am still tired. Of course my symptoms are all hightened today due to the fatigue and stress. But at least I feel better now than this morning and not worse.

I hate giving into the disease like I had to today and to admit that I cant do it all like I used to. Stress at work used to be like a drug for me that gave me more energy and drive and now it makes my MS worse. I hate that. Not fair. I don't want to give into it. I don't want to think of myself as someone who can't handle a lot of stress but that's what I feel like today. I try to remember that dealing with a chronic illness (let alone 4) is more stress than most people tend to deal with in a day let alone what work brings. I try to remember I am stronger than I think I am today. I am a good worker and not a slacker.

I will have to deal with the reprocussions of my absence today on monday. I will find all the things left undone because I wasn't there to babysit. I will have to talk to my boss about my workload and admit that I can't handle it all eventhough I thought I made it sort of clear last week. I guess I need to push the issue further. Until then I will enjoy my weekend and forget about the stress of work. I have other things to stress about this weekend like Tysabri or not Tysabri.

Getting better

2006-03-05T18:15:00.000-05:00

By Friday I had enough of the draining. I talked to my boss and told him I am and have been having yet another MS flare (I kept it to myself until then at work) and that I can't seem to shake it. I said I might need to take time off or work shorter hours until I start feeling better because I was just running in a circle....resting all weekend to wear myself out all week at work. He supported me.

Saturday I did stuff around the house, reviewed our financial situation to see if we did have a baby would I be even able to afford to stay home. Found out not really. Well if we really wanted to live thin we could but best if I keep working even if part time. Saturday night we went out to dinner with our neighbor to our favorite local small mexican restaurant. AFter we came back chatted and had drinks (I drank water). I did my shot and went to bed. I once again took Aleve with my shot and when I woke up. No bad side effects. Trouble sleeping and extra tired today but that's an improvment so I won't complain.

Today is tired day so I am taking it easy. Napping and picking up the house. My husband is growing very tired of our lack luster weekends in. I told him just because I wasn't feeling well didn't mean he had to stay at home with me. That's the struggle between us. If I feel bad he wants to stay with me but I feel guilty he has to be disabled because of me. However all his family is in various states and most of his friends are in other states too since he moved here to be with me.

My spasticity and numbness in my right leg is almost gone. Yipee!! My back is a little spastic but tolerable. I stopped taking baclofen and will just deal.

I see my neurologist on Thursday. I am excited. I want to ask questions about these flares these last 3 months and what it all means for me. He will be at the Tysabri committee review Tuesday and Wednesday so Thursday I will get a very good update on how that all went from him. I am excited for tysabri's approval. I know many are concerned about it's history but I see it more as a step forward for MS. If it gets rejected, companies will be afraid to invest in research and trials similiar to Tysabri's basic theory. Heck people dye from tylenol and that's still a very popular drug. Any new drug should be a concern though.

I want to know form him when he considers someone in SPMS and do my 2 flares in 2 months mean the avonex is not working? I want to know what disability level he rates me. I want to know his thoughts on me getting pregnant soon. I want to know if I need to worry because I had 2 flares in 2 months but nothing for 2 years before that. I want to know what made him go into MS.

SPMS? MS Rut

2006-03-01T22:29:00.000-05:00

New symptom. Numbness in my right leg from my calf to my ankle. It's so annoying and I am extra tired. What the heck! Geeze can't a girl get a break from you stupid MS. I wonder if it's the extra stress at work. I know they say it could possibly make things worse or flare but I haven't recovered from my latest spasticity flare and here I go and get a new symptom.

It made me start wondering if it could be secondary progressive MS. That and something I read in the curing MS book about if you are at a disability 4 you are considered in the first stages of the progressive state of MS. That makes me sad if that is true. Damn it I am only 32. I don't want this now. I hate the fear it brings me....the flares and symptoms. It makes me think of what could happen. What if. What's next. I'm scared. I think I see my doctor next week but am thinking of calling to see if I can get in sooner. I don't want to do steroids but I need some reassurance of some kind that this too shall pass and no it's not progressive state of MS....yet.

I haven't had a break since early December. I've been wearing thin too. So pooped at the end of the day. Sleeping or resting all weekend. Add the extra stress at work and it's just too much to take some days. I wish some days I was on disability so I didn't have to deal with the extra stresses of work. I wish I could go back to how I felt this summer. I feel like I am going into a depression again. I'm not fun to be around these days. Feeling sorry for myself a bit too much I think but then again who wouldn't. It's so hard to be so strong all the time. Why don't they have books on this. Why don't they have lectures or classes on this. This emotional struggle MS adds. How down you can feel about everything but you just push on.

I busy myself with work during the day so I "forget" about my MS or my fears sort of (except when walking). Then I come home and occupy myself with TV. It's my way of avoiding reality. Reality sets in at night before bed time. I have to go back to being me and not living through some TV show. Reality sets in when I wake up in the morning and have to get out of bed despite the fact that once again I feel like I haven't got a single minute of sleep. Funny how I don't dream about having MS. I don't have any medical problems in my dreams.

I want to get through this rut. I want to recover physically and emotionally and move on and be happy again.

Spasticity changed. Took Avonex. Curing MS book update

2006-02-27T14:21:00.000-05:00

My spasticity seemed to have been getting better until this weekend. My right leg had been fine the last few days but then on Saturday started hurting all over again. Pretty bad and the baclofen wasn't helping as much. What the heck?!? Ughhh Back is way better and almost 95% back to normal but the darn leg. Feels like a constant cramp in my right calf.

Slept a lot this weekend to help get this flare to go away. Darn Flares. Do I really need my body to remind me loudly that I have MS by giving me a flare. I mean really. Just let me be dumb T cells.

I took Avonex this weekend. Am off my Avonex protest. Now that I know better how it works...and how it doesn't work.

Betaseron was tested because they thought MS might be caused by a virus and thought the interferon beta would supress the virus. In fact it supressed the immune system and therefore reduced MS flares. This lead them to learn MS was not a virus but rather autoimmune (or at least prove that theory stronger).

I am almost done with the curing MS book and love it even more. It helped me understand the difference between all the CRAB drugs (they dont' know how copaxone works...huh). I also learned some things I already assumed such as people with MS tend to get less viruses than the average person. That's way true for me. I hardly ever get colds or flu. It's been that way my whole life. I learned how long drug trials really take to develop, manage, submit, review etc. I learned more about Tysabri and how it is different than the CRAB drugs.

Yep is't a flare. Curing MS book

2006-02-24T13:58:00.000-05:00

So yes I have definately concluded I am having a flare. I posed the question on the MS Board at MS World Forms how often people have flares. I expected it to be all over the board and yes it was but average I think is 1-2 per year. I read in a book once it was 1.8 so that sounds right. That means no more for me for the next 10 months...right...yah sure.

I am getting better in terms of the pain but the fatigue is harder to deal with right now. I feel like I am barely making it each day and then spend the night recovering and wake up to do it all over again. I am so glad it's friday. Not so I can go out and have a great time this weekend. No. I need to recover from this tiring week. Once again. Ahh to live for the weekends so you can sleep. Who ever thunk.

I am reading the Curing MS book by that Harvard Medical Neurologist. I am on page 80 or something like that. So far the book is right up my ally. I question everything and want to know why about everything and this book answers those questions. What tests have doctors done since the early 70's on MS. What theories have they had. What mistakes have they made. What does a doctor who treats MS'ers think about their patients. I think it takes a special doctor to really really care about their patients like I feel my neurologist does. To care so much you want to help find a cure for them and not so you can be published or win an award.

So if you are the type of person that has to know everything about everything then this is the book for you. If you are the type of person that easily gets confused with all that medical mumbo jumbo then I don't recommend it.

Avonex Protest

2006-02-20T12:52:00.000-05:00

I am protesting Avonex this week. I refused to take my shot this weekend. I am mad at it. It's not helping. I think I am having another flare of my MS. That's 2 flares in 2 months. What the heck?!? I think I read the average is like 1.8 flares per year. Flare # 1 was Oct 2003. Flare #2 was Dec 2003. Flare #3 (although nothing new on MRI) was Dec 2005. This would be flare #4. Well that is my lucky number....

This time it's spasticity in my right leg (last time it was my left leg) and in my lower back again but more on my right side. Also my legs in general are super tingly. It doesn't take much walking for them to start tingling. Slept most of the weekend or just stayed on my back to try to prevent my spasticity in my back from getting worse.

I was downing baclofen every 3-4 hrs (10mg) which is the most I have needed ever. I know the doc said I can go up to a total of 80mg per day. 4 hrs in between each pill doesn't cut it. It starts coming back within 2 hrs or so.

Is this a true flare - flare means symptoms get worse or occur longer than 48 hrs. This started Friday and is getting worse so I do think it is a flare. I don't want to call my doctor becausee he might want me to do IV steroids again and I just don't want to deal with that right now. My face is just starting to clear up from my last round of IV steroids (solumedrol 1000mg/day) in Dec.

The Death of a dream

2006-02-15T10:45:00.000-05:00

Many people ask how did you feel when you got the diagnosis. I would say ok....at first. You see I was just so happy to have a name to these really strange sypmtoms. Besides when you have these symptoms a large part of you expects them to fully go away and you will be back to normal in no time. Just like when you get a cold. You always know it will go away and you will be back to normal.

Then reality starts to set it. These stupid symptoms aren't going away. Why not! Darn it. I don't want to deal with this anymore. OK this isn't funny anymore you can stop torturing me now god. Just make me normal again.

Then the dream starts dying.

You start realizing what a diagnosis of MS means to you now and in the future. What it means to your relationships, family, friendships, work. It's about that time that those around you start getting more comfortable with your diagnosis to the point they don't ask about it as much and don't offer to help you as much. However you are getting more and more uncomfortable with your diagnosis. Your thoughts are overcome with MS. You begin to see how it has already affected your relationships and friendships. No one wants to really known anymore how you are doing day to day. Those closest to you might but they don't want to think about it as much as you have to. They don't want to be reminded of your MS eventhough you have no way to ignore it.

When will I get better - some say it might be never. These symptms could be permanent. Some say it could take 2-3 years to recover as much as you will.

Will my husband, boyfriend etc lose interest in me. I am damaged goods. Why do they want to be with damaged goods. They could be better off without someone who's damaged.

The thoughts that overtake my mind go round and round day in day out as I learn to cope with the death. The death of who I was and who I wanted to be. The death of the future I though I knew and had in hand. The death of a dream.

I can't hang with my friends as much so they just stop asking. I still want to be asked. I still want to feel included even if I have to say no. But let me make that decision. It's hurtful not to be included. I fell like I'm not included because I have MS not because I usually say no these days.

I can't keep up this stamina at work. Eventually I have to give into the disease and reduce my hours or workload. Will this black ball me from any future career moves? Will I be looked at as one of "those people"? Will I now be the brunt of all jokes about lazy workers eventhough I used to be the hardest worker.

Give into the disease. I refuse to give in. But if I don't my body will torture me some more. I wish I wasn't so determined at times or I would give in sooner. Now I deal with the torture because of my determination to finish my projects.

Will I be able to raise kids? Good kids? will they be harmed in the long run by having a mother who will probably let them watch too much TV because I am tired. Will they grow to hate me or my disease? Will they help or become distant? Will they be embarassed to be seen with me if I become more visably disabled? Will I leave them too soon? Will I pass it on? Will they learn from my strength?

Will my husband stay....5 years from now. 10? What if I can't work or walk?

Will my family help if I get worse. They used to help when I first was diagnosed but not any more. Who can I depend on in the future.

Will I lose my job? Will I have to go on SSDI? Will I lose my insurance. I can't afford that.

Is my doctor a good doctor? Does he know everything he should? Is he prescribing the right medications? Will he be there for me when I am freaking out with a new symptom at 2am or will I have to wait 3 days for an appointment?

When will my next attack be? What will it be? Will I lose my sight, my strength, my balance, my ability to walk? Which would be worse really?

In time these thoughts fade but it does take time. In time you become more comfortable with it all. You go through all the steps of grieving the losses. Sadness, anger and accpetance. Sometimes you backtrack and sometimes it seems it's taking forever to move on. A new symptom or flare can make you start the process all over again.

You forget what it used to be like to be normal as now you have a new normal. You take for granted when you feel normal and wish for the days of your new normalcy when you are having a flare.

You move on. You accept. You accomodate. You change. Your life changes. Your dreams change.

Johnson and Johnson and the IBot NEED you!!!

2006-02-09T11:35:00.000-05:00

My company makes electronics worldwide. In Michigan specifically where I work, one of our customers is Johnson and Johnson. One of the products we make for them is circuit boards for the IBot Mobility system. Johnson and Johnson is currently working with the government to get Medicaide approval for this inventive wheelchair. They need your help to talk to your senators and representatives to get them on board with this approval.

I have seen this wheelchair in action right here at work and it is awesome. There are a few already in the market which was their first design. We worked with them to make a better design and are now ready to start production on the new version. Sales will depend on Medicaide approval as there are cheaper scooter options but this chair is awesome compared to a simple scooter. It can go up and down stairs, it can go up on two wheels making you taller and easier to reach things. You can constantly ride in that position if you like as it self balances. It can go up and down curbs and pretty fast on grass even. IF I ever needed a motorized wheelchair I would love to have one of these.

Who: You and your Friends and Family
What: Medicaid is considering coverage for the iBOT. Public Comment period is now. We need our Senators and Reps to sign onto letters that are circulating in Congress now.
When: 1/26/2006 - 2/26/2006
Where: In Congress
Why: It is allowing people with disabilities to lead independent lives
How: Its really Easy…….Dial toll-free 1-877-224-0041 to be connected to the Capitol switchboard. Ask to speak to your Representative's office (the operator will be able to locate your representative by your zip code) and urge him/her to sign the Bass-Langevin letter supporting Medicare coverage of the iBOT. Let them know that individuals with disabilities should have access to innovative technology that will improve their health, function and independence. Then make two more calls to both your Senators asking them to sign the Enzi-Levin letter!

Here are some links to information on the iBOT:
http://www.independencenow.com/ibot/ Website
http://wcco.com/seenon/local_story_017230035.html Short News Video
http://www.koaa.com/news/view.asp?ID=4522 Short news Video
http://www.itemcoalition.org/ Info on coverage for the iBOT

being beat up by MS

2006-02-08T13:26:00.000-05:00

Lately I have been getting a fatigue beating from MS. Not sure if it is stress related or just some other funky thing going on this week inside my brain or spine. I was so tired yesterday I left work at 12:30. Last night I couldn't sleep or the night before despite the Lunesta. I haven't had that problem since the Lunesta. Maybe they sent me placebo pills since I just started a new re-fill from a different pharmacy. (that's my rediculous theory anyway...haha). I hope I get good sleep tonight.

I see my shrink today. Go once every other week. Not sure if it helps but if I have a breakdown he will quickly fill out paperwork to get me excused from work and disability payment coverage. That's one way to look at it right? I really don't have much to say most visits. If I have a bad day, I get thorugh it and by the time I see him I am ok and just know it was one of those days where I scream at the world this isn't fair and cry about how hard some days are.

I had one of those days Monday night. I cried in bed for about 15minutes and then to my husband (because he heard me despite how quiet I tried to be). I told him I wish I was color coded so that way people could clearly see how sick I was feeling. Red would be the worst so when people saw I was orange they would be like "oh you are orange and will be red soon if you don't go home and get rest". That way I won't feel guilty or feel like people don't believe me when I say I am not feeling well. My husband says sometimes i am my own worst enemy. I think he is right. I still worry about what other people think or if they believe me eventhough not as much as I used to. I don't blame myself anymore for things. Just get mad at the MS.

This fatigue thing is just the hardest...hardest to explain, hardest for people to understand or believe, hardest to work around, hardest to manage. It controls me and what I can or can't do each day. My house is once again a pit and I hate it. I want the energy to clean it. I thought about taking a week or few days off to catch up on stuff around the house I have been putting off such as putting away laundry, bills/mail, clean out some junk drawers I can't even open, etc.

Missing the Superbowl Festivities

2006-02-05T15:10:00.000-05:00

I had a pretty rough week. I pushed myself too hard at work and worked too many hours because of this new customer I was assigned. I haven't had time to talk to my boss to say it's all too much. I even had 2 phone calls before 8am at home on friday and one at 8:30pm from the cusotmer and then 2 more Saturday morning.

Needless to say Saturday I just layed around all day sleeping off and on. By that night I was so sick of laying around but didn't have the energy to do anything. I eventually took my shot and went to bed.

I felt like I was really missing out on the superbowl activities going on around town. In fact at one point my husband and I were going to spend Saturday night at my brothers since he lives right downtown walking distance to everything. But that was out-rulled earlier this week because I was so warn out.

Today, Sunday my husband and I were supposed to go to his work superbowl party downtown. Friday night I passed and asked if he could take someone else. He ended up going with my brother. I am sitting at home once again dealing with the Avonex side effects. I got the streatches last night, no sleep and headache this morning despite the fact I took Aleve like I did last week. Why did it work last week but not this week? I know drinking water is important so maybe I need to work on that too. I took a nap from 10am-12 and have been resting the rest of the day....more like boring myself to death. Ughh I hate being board at home but having no energy to do anything else. It reminds me of my first MS flare when I couldn't do a thing for weeks and was so board.

If I wasn't thinking of trying to get pregnant soon, I think this would be the time I would look at switching CRAB drugs. I completely understand why people stop taking them. I hate it so much that I question it too. I know there is an FDA meeting in March to talk about Tysabri. Hopefully after that it will be approved. However I am not switching until after I have a baby.

I know my back is probably 90% back to normal. I haven't been taking my baclofen and can pretty much make it all day without pain unless I do a lot of standing or walking that day. Even when I do have the pain it's mostly tolerable. My cervix seems to be healed. So now's the time to figuring out when I want to start weaning off my drugs. Effexor is first since I know it can take a while to wean off. I am on 150mg but think maybe I should ask for some 75mg pills to help the wean. I think Lunesta will be next. I already quit taking my nortriptyline and baclofen. Then I will stop the Avones and weeks after that the birthcontrol.

Getting pregnant is a huge step for me and scares me. How will my body handle it? Will I be twice as tired and less able to work esp the first 3 months? Will I have any flares after birth (which is common)? Will I be able to still work and take care of a baby after work? I think that's the one I fear the most. I don't want to quit work and I know taking care of a baby all day can probably be more tiring than my current job. My husband works a lot of hours and I don't think that will change much post baby so I won't get much help from him after work. WEll maybe I need to talk to him about this fear more.

mad as heck at MS

2006-02-02T22:35:00.000-05:00

Well those few days of feeling good are gone. Tuesday I was asked by my boss if I could take over another customer. I of course said sure trying to prove that I was as good or better than the rest of my co-workers at my level. I have been working hard to learn about the customer, product, history etc and come to quickly find out the customer was very high maintenance.

Needless to say my 6 hr day began turning into a 7 hr day and today it was more closer to 8. Tuesday night I was in bed by 8 with a headache and being just plain ole beat. Wednesday the same but stayed up later. Tonight is the worst. I didn't get home until 7pm and had to take care of the dog next door. I've been resting since then but can't fall asleep. I am so warn out I am sick to my stomach and ready to let it go any second.

I keep getting these jerks and spasms in my brain. I think of it as a brain fart but it's probably closer to a seizure. It happens every 30 seconds or so if I am not concentrating on something like writing this. Its like my brain gets scrambled for about a second but it feels like a minute because then it takes me another second to figure out what happened and to remember what I was doing before the scramble. You know when your TV would roll and scramble for no reason back in the antenna days (pre mass cable). That's what it feels like happens in my brain.

It's scaring me and making me angry at this MS thing. Gosh darn it why can't I have a decent night. Why am I being punished tonight....again! I am sad. My husband is out and won't be home until real late. I just want to cry it all out. Top it all off I ran out of my Lunesta and Nortiptyline (2 sleeping meds) because my new home delivery service never sent them out because they claim they need to talk to my doctor but its been 2 weeks now. I tried calling in a refill to my local pharmacy but not sure if it will go through since they already approved the home delivery re-fill. I asked my husband to pick it up on his way home. We'll see if I get any cause I know I won't be able to sleep well tonight.

Man I never seem to catch a break. I have been having chronic heartburn for probably going on 2 months now. I took the last 6 of a prescription sample I got a year ago, I took 2 weeks of Prilosec and now down tums and zantac daily. Nothing is working and I refuse to go to the doctor because I don't want another single diagnosis. If I don't go I won't get any new tests or diagnosis. I am becoming afraid of getting another illness. With my track record who wouldn't. Tonight is a why me night.

I wish I could take tomorrow off but my new customer is in (decided to fly up just this morning - lucky me) so I can't. It will be a rough day. I wish I could just fall asleep but my brain farts keep me awake. I think I have over stressed and exherted myself this week and that's what's causing it all.

Wish I could just sleep all weekend but my husband's company is having a big superbowl party downtown detroit around the corner from Ford field where the superbowl will be. He's excited to go but I am hoping he would be willing to go by himself if I don't start feeling better. See this is where I start feeling the pressure of the guilt. If I don't go I will feel guilty. I don't want to be known as Dennis sick wife that always stays home but I don't want to make myself sicker.

Well enough complaining and griping and feeling sorry for myself. Time to see if I can fall asleep again.

Top things everyone should know about MS

2006-01-31T13:12:00.000-05:00

I have been trying to think of top 5 things or top 10 things that everyone should know about MS. Here are some of my ideas. Please let me know what other ideas you have.

* MS is not muscular dystrophy. Muscular Dystrophy is a hereditary disease usually in men and usually diagnosed between the ages of 3 and 9. It is a degeneration of muscles within the body. Multiple Sclerosis, who's cause is unknown, is mostly in women and the average age of onset is 30. It is a deterioration of the Mylin, or the fatty tissue covering the brain and spinal cord. MS affects the central nervous system while MD affects the muscular skeletal system.

*The most common symptom for MS suffers is Fatigue.

* MS affects 400,000 people in the US and about 2 million people worldwide

* It is not know with certainty if MS is inherited or not. It is known as familial, meaning occuring at higher concentrations within a family than in the general public.

* Typical MS symptoms, other than fatigue, are spasms, tremmors, tingling, prickling pain, bladder disfunction, blowel disfunction, weakness or heaviness in any muscle, spasticity, dizzyness or vertigo, cognitive or memory problems, paralysis, blindness or blurred vision, numbness, gait or walking problems, headaches, trigeminal nerve pain, depression, sexual dysfunction, (what else am I missing?)

More to come as I think of them.....

Wedding went fine - Broke a Crohn's Rule

2006-01-30T13:48:00.000-05:00

Well the wedding went well this weekend. We got to the other side of the state by 12:30pm, checked into the hotel, changed and went off to the ceremony. After the ceremony my cousins, their wives, my brother, his girfriend and my husband and I went to a bar for some drinks and appetizers. Lets just say as usual I was flying high after 1 margarita. My husband had to tell me it was time to drink water. At 4pm it was time for the cocktail hour before dinner. Had a glass of wine but nursed it for 1 hr.

I am one of those aunts that loves getting their niece and nephew in trouble with their mom or getting them to do things their parents wouldn't normally let them do. Therefore I used the reception as a place to do such things. I had my 3 year old nephew going up to all the women asking for their hand, then when they put it out he kissed them on their hand. I also had my niece asking the 2 little boys that also attended the reception to dance with her. The older one agreed so she danced with him a few times. During the slow songs she kept trying to put her arms completely around him and he kept moving them off. She's only 4 and he was about 6 or 7. I was cracking up! My sister did not approve. She said she doesn't want to be a grandmother while her kids are in their teens.

I rested a lot in between various dances with my niece, nephew and husband. One time I was so hot I sat outside for 10 minutes. Considering it was around 50 degrees it wasn't bad. We went back to the hotel just after 10pm (dinner ended before 7pm so 3 hrs of watching people dance, and doing some dancing myself was enough)

Saturday night after returning to the hotel I took my avonex shot but 2 exceptions this time. One - I forgot to bring my smaller needles so I had to use the big one that comes with the medicine - ouch (ok it wasn't really that big of a deal but it looks a lot bigger). 2 I did a Crohn's no no. I took aleve instead of tylenol as a premedication this time. Lets just say I might be breaking that rule more often. Sunday I felt great as far as post shot days go. No headache, no achy body, no streatches and despite sleeping in a hotel room, I was able to sleep in until 9am. I was so excited that day on the ride home how good I felt. I even had enough energy when we got home at noon to go paint shopping at Lowes and home Depot. Ok maybe I did take a 1.5 hr nap before shopping but that's way more then I have ever been able to do the day after I take my Avonex shot. Yipee!

Spasticity better

2006-01-27T15:13:00.000-05:00

I think my spasticity in my back is gettin better. I now only take 10mg of baclofen once a day usually in the afternoon or early evening. That's it! Yipee!!

Cervix is healing fine.

Having PMS today - getting a migraine...ugh. Oh well.

Tomorrow I have my cousins wedding on the other side of the state so I have to conserve energy today to use up tomorrow. Sunday will be the drive back and rest up day.

ADD

2006-01-25T11:10:00.000-05:00

Lately I have been having a problem with my attention span. I can't concentrate. I can work on a project only so long and I lose complete train of thought and have to take a break from what I am doing before I go mad with frustration. It's annoying really. I've noticed it for the last week or so, but like other daily symptoms I get off and on, this one seems to be sticking. Is it MS? I know MS can cause cognitive issues. I know depression can too but I have that controlled.

This past weekend while my husband and I were out to dinner, I just stared at the menu not reading a thing over and over. I couldn't concentrate on reading a simple menu. I told the waitress I needed more time to decide what I wanted 3 times. I finally gave in and just picked something eventhough I wasn't really sure what and why. I couldn't carry on a conversation with my husband either at that time. I kept losing my train of thought. We both knew something strange was happening to me and eventually I got better as the night progressed but it was strange.

I know boredom can cause me to need me to take breaks but what I am working on is not overly boring and it is complex so it does require a certain level of concentration but I can't seem to work on it non-stop. I just go off into this blank stare and blank thoughts right in the middle of working on my work. Then I realize what I am doing and try and remember what I was doing before I went off into la la land and can't really remember right away. It takes a while before I can figure out what I was doing and to get the concentration back to work on it.

I don't want to lose my mind. That's one thing I am very proud of that I worked hard on. I can't lose it.

Weekend Update - why was I so tired?

2006-01-23T09:40:00.000-05:00

Friday on the drive home I thought maybe I will have enough energy to do something that night. I remembered that a bunch of friends were going to watch a band that night so I called my husband to see if he would want to go. I decided to take a nap as soon as I got home from work and then see if I felt ok enough to go out after I woke up. Well needless to say I woke up and didn't want to wake up. I was very tired. I just wanted to sleep all night long. So I had to call and cancel with my friends. I ended up going to bed early. Plus I kept thinking Friday was not Friday but rather Wednesday or Thursday so I kept thinking I had to get up for work the next day. It was strange. Like every 15 minutes I would think oh I better go to bed soon because I have to go to work tomorrow. I would even ask my husband a couple of times what day it was.

Saturday I woke up and was very tired. I made breakfast though for my husband and I(belgian waffles and sausage). I ended up napping later that morning. Eventually I showered and we decided to go look at a used motorcycle, go out to eat, and go grocery shopping. Now I absolutely hate grocery shopping. Talk about an energy zapper. Plus being extra fatigued I couldn't make it that far and had to go and sit down while I directed my husband what else needed to be picked up. I hate it when that happens. A simple slap in the face or reminder that I can't do some of the simple things people take for granted. I think I sat for 10 minutes and then helped finish the shopping and sat back down while my husband stood in line to check out.

After shopping we picked up some movies at block buster and went home for the night.

That night I didn't want to do my shot at all. I put it off for a long time. By about 12:00am I decided it was time. The shot hurt this time for some reason and I really hit a blood vessle so I was bleeding more than usual. It sucked and I knew I wasn't going to sleep well and was going to feel awful the next morning. Good prediction. I was awake by 4am with what I call the streatches (constant need to streatch) and had a bad headache. By 8am I had enough of laying there and got up. I felt awful. Hot, headache, tired, achy. Why don't these darn flu like symptoms ever go away? They say they will go away withing 4-6 months after starting Avonex and it's been 9 months and I still have them!!! I am sick of feeling so sick on Sundays. I feel masochistic...I give myself a shot so I feel like shit the next day every weekend. I hate this stupid MS "treatment" What doctor comes up with these unappealing treatments. Pill people....focus on making all treatments a pill. Then focus on eliminating all side effects!

I think I was extra tired this weekend because of my cryosurgery from Wednesday. Although a simple procedure like cervical cryosurgery for the average person wouldn't wear them out, for me who is already beaten down by my own immune system each day, simple things take a much larger toll. Today I feel a bit better. Tired as usual and had a hard time waking up as usual.

No major plans or doctor visits this week...luckily. But I still need to reschedule that darn dentist appointment to have a wisdom tooth pulled.

I got burned

2006-01-20T12:07:00.000-05:00

Well the cryosurgery on my cervix to remove the dysplasia went fine. Basically they take this freezing probe and put it on your cervix for 3 minutes straight to freeze it off. The doctor would say "one minute down 2 minutes to go." I told him I felt like I was on jeapordy but didn't know the answer. By minute 2 I could start feeling the cramping. It wasn't too bad. More like painfull pressure. After it was over, I had to stay lying down for 15 minutes as you can faint or get dizzy if you stand up right after. Also it can cause hot flashes. I got one hotflash when I was laying down but that's it. (yes I know what a hotflash is-I was once on Lupron which temporarily put me into menopause for endometriosis)

On my way home the real cramping started. It was bearable at first but then got really bad. On top of that it was a blistery snowy windy day and I had to pay extra attention to my driving. The cramps on the drive home were awful. I couldn't wait to get home to take a pain killer and lay down but I had a 45 minute drive as rush hour had just started. It was a long painful drive. When I got home the cramps weren't as bad so I just layed down. No pain killers. I became very very weak and tired though so I was in bed before 9pm. Yesterday I was still extra tired. I had a hard time making it all day at work but got a second wind at 3pm and made it through the day. No cramps on day 2. Just....(warning this is gross)...discharge....a lot...yuck!!! they don't tell you how much to expect, just that it can last for 2-3 weeks!! Gross I can't bear wearing a pad for 2-3 weeks. They make me feel dirty.

On a lighter note, I went to bed early again yesterday and today I am feeling good. I would say it's a good energy day.

However, my little Chihuahua isn't doing well. She was puking last night. First on my couch (fun to clean!) then in bed just after we went to sleep with the lights out. She quietly puked on my arm and the pillow. I didn't hear it and I put my arm to my head and got it on my face and hair....gross! I went straight to the shower as my husband began to clean the mess. She slept in her crate after that one. I am afraid of the mess I might find in her crate when I come home today. I don't know why she's sick. She didn't eat anything weird that I know of. Poor baby.

No real plans for this weekend. I thought about maybe going to the Ice sculpture display in Plymouth. It's the biggest one the US I think I read. There's the autoshow too but that is a zoo and not good for wheelchair users and I can't walk that much. It's a mass of people pushing left and right and you can't see a thing in the chair. The superbowl will be here in a few weeks. Man will that be a chaotic mess. My husband's company rented a restaurant downtown for the day but I don't know how we will get down there or even find parking. My brother lives downtown but I think the roads all around him will be closed off. Besides the superbowl there is the snooperbowl (snoop dogs) and the winter fest in downtown detroit and the Taste of NFL where NFL stars are matched with chefs to make food for people to try. There is also the superbowl side show which is stars, events, bands, etc which is down the street from ford field. Just more reasons to cram 1,000,000 all one one street trying to get to the same place at the same time and hope to find parking. I can only imagine the road rage.

4 things

2006-01-17T11:47:00.000-05:00

Four Jobs that I've had:
1) sold clothes at American Eagle in Highschool for one x-mas season
2) Worked at a stock brokerage firm part time in college for 4 years (PaineWebber now UBS)
3)Worked as a financial analyst at GM
4) Worked at Dariy Queen was my very first job in highschool

Four movies I watch over and over again:
1) none. I hate watching anything I have already seen once. Even TV shows.

Four Places I've lived:
1) Troy Michigan (grew up there)
2) Kalamazoo Michigan (college)
3) Chihuahua, Chihuahua Mexico (for work)
4) Fargo, North Dakota (for work)

Four T.V. shows I watch:
1) Desperate Housewives
2) The Bachelor
3) Law and Order
4) House

Four Places I've been on vacation:
1) Europe
2) Jamaica
3) US virgin islands
4) Hawaii

Four websites I visit daily:
1) My Space
2) Yahoo Mail
3) Various Blogs
4) My customers site for work

Four places I'd rather be right now:
1) Home in bed
2) In Australia (my dream vacation)
3) Somewhere warmer and sunny but not too hot
4) Shopping with an unlimited amount of money

Sick Grandma - Guilt from the past?

2006-01-17T09:49:00.000-05:00

Yesterday morning I found out my grandmother on my mothers side was really really sick. She had been in and out of the hospital for the last few months for no reason other than to get attention. My dad and his sister were really getting sick of taking turns talking her out of needing to go to the hospital and then taking her when she compained too much. Every time she went they would find nothing, complain she wasn't taking her meds, and send her home after keeping her for a day or so to rule out things she was complaining of. She's a nurses worst nightmare, complain, complain, complain and apparently has become my father's worse nightmare.

This time my dad took her to the hospital because she claimed she fell. However after day 1 they noticed she had a UTI which had spread to her blood and then had a e-coli infection in her blood. Then her blood pressure dropped below 100 and by the time I was on my way to the hospital, my dad had already made preliminary funeral arangements. Just before I got there she became non-responsive and they decided to do a CAT scan to check for a stroke or blood on the brain. I called the rest of the family and my mom and brother also went with me to the hospital. This was it we thought.

But NO. Like my grandfather on my mother's side, she has 9 lives and miraculously woke up when the phone rang and my dad answered it in her room. Soon after that, the complaining started. OH no she's back to normal! Ughh! Luckily my dad had also made preliminary arangements to put her in a nursing home. I don't want to be around when he tells her that one. My dad has been the one to mostly take care of his parents since I was little. My grandfather died when I was in college (10 years ago) and my dad's one sister now takes care of her from time to time. She's now stable and we don't expect any changes any time soon. Just will be in the hospital for a while.

You see the history here is that I haven't seen her in probably 8-9 years. After my grandfather passed, and my parents decided to go on vacation, she did something my grandfather did, faked a stroke so they wouldn't leave. They did anyway after the doctors told her there was nothing wrong and sent her home. However I had to take care of her, feeding her breakfast and lunch and my brother did dinner. She was wicked mean! Calling my mother every name in the book and trashing her. AFter a few days I couldn't take it and called my parents on vacation. Little did I know she had done the same to my mother to her face and hit her with her cane a few times. More drama ensued as she called her out of state children and claimed my dad was stealing her money of all things. It was about 3-4 weeks of drama that ended in my mom, my brother, my sister and I never talking or seeing her again.

So do I feel guilty that she was on her death bed and I hadn't seen her or spoke to her in over 8 years? Sort of. But part of me didn't. I guess if I didn't see her, a part of me, even small, would feel guilty if she died and I never saw her again. Now I have seen her and am ok if she passes. However that probably won't be any time soon.

TGIF

2006-01-13T12:54:00.000-05:00

I'm so glad it is Friday. Last night I went to dinner with some girlfriends but before they got there I did some shopping to use up my gift cards. By the time I was to meet them I was beat. My back killed, my legs were very weak and I just wanted to lay down. Can't do that in a busy restaurant so we just ate and chatted for hours. I got home after 10pm and today I am dragging. Gosh I can remember the days when I would get home at 2am and be dragging but now I am dragging just because I went out to dinner and some shopping after work. Man is that lame or what. MS turns you into a grandma. I know it has nothing to do with the fact I am 32 now...ha ha. oK maybe a little but MS is to blame for the rest.

I miss hanging with the girls and people watching. We were even checking out the waiter for our one single friend. The rest of us were married. One day I will make it to the bars to have a night out with the girls but I don't know when or where. It's been a long time....I think since before I got MS that I have been out partying. I am a quick drunk too. Especially since I am on so many meds that say "may cause drowsiness, Alcohol may intensify this effect". I hate that effect. One drink and I am a limp noodle. Oh well.

My husband got a big bonus yesterday which wasn't expected so it looks like that motorcycle might be coming this summer after all. I love motorcycles and wish he never sold his old one before we moved to Michigan but oh well. This summer will be full of weekend bike trips and long rides in the fall. There are 3 main criteria to the bike we will buy 1) cruiser 2) 1500 cc's or greater 3) passenger pegs must be low enough to comfortably ride for long periods of time.

Rules of thumb

2006-01-12T10:26:00.000-05:00

I sent my rules of thumb that I listed below to my parents and sister. Just curious what type of feedback I might get...

Funny fact on rules of thumb....the phrase comes from how thick a stick could be that was used to beat your wife, it could be no thicker than your thumb...known as the rule of thumb.

I went to the shrink yesterday. Unlike most days I sort of blurted out all the thoughts I occasionally have but usually keep to myself like the guilt and the guilt and worring about felling like a burden going foward. I feel a lot less guilt than I used to and don't worry about becoming or being a burden as much as I used to but darn it, it won't go away. One thing he asked is can you go very long without being reminded of your illnesses. I said a day doesn't pass that I don't think of them. Maybe I can go an hour or two without thinking about at least one symptom or illness. However if I am walking I am reminded, if I am standing I am reminded (darn those tingly legs). I really hate that. I don't want to be constantly reminded. I hate that my illness or illnesses invade my thoughts regularly. I feel like a constant illness complainer....hypochondriac.

I guess most of them are just thoughts I keep to myself or post here so those that see me daily don't really hear it.

I don't think of my IC but when I get a flare or if I think about how much acidic food I have eaten so far. I don't think of my endo but during my cramps or when changing a patch. I don't think of my crohns but when I am in the bathroom or having pain from it. It's that darn MS...that I think about. It's been 2 years and 3 months since the onset. When will that constant thought fade to an occasional thought? Sure I have given up the fact that I will never be back to the way I used to be. That took a long time to accept but when can I give up it constantly popping in my head and bugging me?

I am once again enjoying my job so that sort of distracts me but going upstairs to see a co-worker or for a meeting brings it back. So does walking to the cafeteria for a pop or lunch or water.

Do you think about your MS this often? Does it bug you? When does it start to fade?

Disease Update

2006-01-10T14:08:00.000-05:00

It's been just over a year since I started blogging and I thought I would do an update on the status of all my diseases, illnesses, viruses, and things that bother me.

Let's start with the easiest to deal with. My Interstitial Cystitis (IC). I take 200mg of Elmiron twice a day to help prevent the symptoms. Well that's what I tell doctors. In reality I hardly ever remember to consistantly remember to take the meds. I think I get a total of 200mg a day. Usually at night. For the most part I am symptom free, however during "that time of the month" I get a bit of a flare sometimes. I think it's partially due to a tampon pushing on my bladder or just hormones making the IC flare up I am not sure which. Either way I just take a pyridum pill and the pain goes away within 1/2 hr. However pyridum, for those that have never taken it, causes your pee to be bright orange and it stains....toilets. If I am on pyridum and I am visiting a friend or family member I tend to warn them before I use the bathroom that they might get a stain in their toilet but it goes away with a bit of cleaning product. Gross and funny at the same time.

Second easiest to deal with would be the endometriosis. Lately, most months my cramps have been tolerable. Sometimes I don't even bother taking any pain meds to help deal with them because I can tollerate it without. Once in a while, maybe every 3 months or so, I get really bad cramps and take tylenol, vicodin, darvocet, which ever works and also use a disposable heating pad on my abdomen (I highly recommend them!!). I also usually work from home, don't work at all or leave work early those days. However it is maybe once every 3 months so that's not so bad. I guess the 6 months of Lupron I did years ago and the fact that I am on birthcontrol really helps keep the endo in check. We'll see what sort of fertility issues I may have because if it once we start trying.

Third easiest to deal with I would say is this new issue called HPV or what lead to me getting mild dysplasia (aka low grade squamis intra epithial lesion). No pain, no symptoms really just a biopsy and now I have to have cryosurgery next wednesday the 18th. I didn't rank this the easiest because in talking to others who have had the same thing, I will have to get a pap smear like every month or every other month for a while and then once every 3-4 months and then once every 6 mths and so on until I am back to once a year. Unlike the illnesses above, this one requires invasive (mentally not physically) treatment and checking. Therefore I rank it 3rd easiset to deal with. I mean who wants to see their gyno that often?!?

4th easiest to deal with would have to be...Crohn's disease. I don't take any meds for it. It causes pain occasionally, maybe a 1/2 total each day (5 min here and there), and it causes diarrhea a few times a week. It was getting better there with the Avonex but in the last couple of weeks the diarrhea has increased again. Almost every day. However most days I would rather have the diarrhea than the pain that I get when I am normal. I should probably see the gastroenterologist since I don't think I have been there for over a year but I just refuse. I figure if I can deal with the pain and the diarrhea (which I have done now without meds for years) then no need to go. I am ignoring the fact that the Crohn's could be causing permanent damage to my colon since I am not on treatment but I really doubt there is much damage. In fact my last 2 colonscopies only showed minimal Crohn's tissue damage. I have a colon of steel! For me Diarrhea is just an every day thing for me now. I have no sympathy for those that get it only when they ate bad food. So this is the 4th easiest to deal with.

The most difficult illness for me to deal with is....drum roll please....Marriage! Ha ha just kidding. I know it's pretty obvious that Multiple Sclerosis is the hardest illness for me to deal with. I take Avonex shot once a week in the thigh, pre-medicate and post-medicate with Tylenol only now. I take 25 mg of neurontin at night to help with sleep and neuropathic pain which flares up at night. I also take 150mg of effexor the antidepressant to help with those days where I want to scream at the world that this isn't fair! I take 2mg of Lunesta at night since Effexor can keep you up and so can thinking. I take 20mg of Baclofen for the spasticity I get in my back.

For me the hardest symptom of all my illnesses is fatigue. I have the kind that starts as soon as you wake up and really never goes away. Sure I have spurts of energy at certain times of the day but I am never back to how I used to be pre-MS. I yawn pretty much all day long (remind me to add a few yawn comments to my list of things not to say to someone with MS). I wake up feeling like I haven't slept and I am in love with my snooze button. I could take a nap at any moment and have done so at my desk a couple of times. I fear long meetings with the lights dimmed because I know I will fall asleep. I have learned to push on through it. People say well why don't you just sleep if you are so tired, but then I would be sleeping all day and all night and get no where in life. I just deal.

Right now my second worst symptom to deal with is the back pain due to spasticity!!! Ughh! I hope this is one of those MS symotoms that will go away in time but it is going on over a month now and I still have it. Yesterday I thought it was getting better as it didn't start hurting until 2pm and I hadn't taken any baclofen yet but today of course it came right back first thing in the morning. "insert scream at the world here!" Why did I have to get spasticity? Couldnt I just have neuropathic pins and needles pain? I have had that pain before and am not scared by it. Spasticity scares me because it is a new symptom to me and it reminds me that I will experience new symtoms through out my MS experience. I don't want NEW symptoms I just want the old ones. How about Banding instead? I don't want a reminder that this is a progressive degenerative disease. That is the worst thing to think about....the possible progression. I think my husband worries about it more than me really. I think my effexor has turned off that part of the brain that lets me worry about the future of my progression.

Other than those 2 I don't really mind my other MS symptoms such as tremmors (rarely happens) spasms at night, occasional tingles here and there, or numbness here and there, and trigeminal nerve pain (vary rare now). Luckily the spasticy in my left leg has gone away. Lets hope the back follows route.

So that about sums it up...oh wait...I forgot one diagnosis, depression. I had what I call my breakdown in June of 2004 when I got my official diagnosis of MS. It wasn't until late October of that same year that I really lost it. I decided to take a month off work to let my emotions rest a bit. I think it helped but I still have days where I just want a week off to focus on me. I have been seeing a shrink since June 2004 and I guess I have improved since then. Despite my last posting, I don't feel AS guilty as I used to (boy I was really really a guilty person then), I don't blame myself for these illnesses AS much (only when dealing with those around me who have to deal with my illnesses), I don't cry to sleep hardly ever, I don't hate life as much, and I don't worry about the future as much. I am basically happy most days. I have things to look forward to and I know life goes on despite my illnesses. I have learned being supportive to others

The guilt that MS brings

2006-01-09T12:33:00.000-05:00

MS makes me feel guilty

Guilty if I call in sick one too many times that I will be thought as taking advantage of the situation (FMLA)

Guilty if I decide to work from home on the days I don't feel quite up to going in again for fear I will be thought of as taking advantage of the situation (being allowed to work from home occasionally)

Guilty if I don't go with my husband to that motorcycle show after work because I am too tired. He puts up with enough of me and my illnesses let alone me dampen his wishes because I am tired.

Guilty if I don't get out of bed and make it to my nephew's 3rd birthday party on time.

Guilty if I tell my sister no I can't babysit next Saturday because I need a weekend of just resting to make up for the last 3 holiday/birthday etc weekends.

I feel guilty if my house is a pit and dishes are piling up and there is a weeks worth of laundry to do and all I want to do is sleep.

I feel guilty for not seeing my friends as much as I used to. Since I moved 45 minutes away from most of them doing a stop over is usually something planned in advace now. Plus since I can't stand for long and don't really drink much anymore meeting them up at a bar is not going to happen either.

I feel guilty that my parents worry about me and I bring them down because of my illnesses

I feel guilty that I never want to have sex. (see previous e-mails why)

I feel guilty that I seem to talk about my illnesses and how I feel or have been feeling all the time.

I feel guilty that I can't do as much around the house as I used to. I was a very determined do it yourselfer and now I have to ask my husband to do certain things so I can save energy. For instance I don't go downstairs to the basement. If I need something down there or need to put something down there I ask him to do it and yes it makes me feel guilty.

I feel guilty that my husband has to be handicapped by my illnesses and yet he chosses to do so.