Tuesday, September 27, 2011

Where the heck have you been?

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

Wednesday, February 20, 2008

Oh my aching...

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.

Monday, February 18, 2008

Let the sickness begin

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?

Wednesday, February 06, 2008

Back to the grind

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.

Thursday, January 17, 2008

torti what?

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.

Friday, November 30, 2007

The best news EVER

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!

Monday, November 26, 2007

Nervous for MRI results

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