Wednesday, October 22, 2008

Mommy and MG

[Note: post written in October, but published November 24]

I've mentioned before how I hardly feel pregnant this time around - especially compared to my first trimester with Lily. There is one BIG difference however: my good friend, MG.

Most of you probably know a little about my history with myasthenia gravis. It's not something I've mentioned here at all, because well - it really hasn't been a factor in many years. Brief history - I was diagnosed in 1995, the summer before my junior year in college. I got pretty sick quickly. Went from having facial muscle weakness to having trouble holding a hairdryer, brushing my teeth, buttoning my pants and walking. I got hooked up with a great doctor at St. Elizabeth's, had a thymectomy and was back at school in time for my junior year. The thymectomey didn't solve the issues for me, however, so I was also put on prednisone - a fairly hefty dose. The prednisone helped with my symptoms immensely, but left me with a host of side effects - none of which were very fun (especially with the fragile self-esteem of a 20 year old!). Eventually my doctor switched me to imuran and life got much better. The disease stabilized and with the exception of having to give up long distance running, I was able to return to a pretty normal life.

OK so fast-forward a bit. Still on Imuran, now I'm pregnant with Lily. Imuran's not really a "pregnancy-friendly" drug, but after weighing the risks on both sides we stuck with it. The MG pretty much let me be during the pregnancy and I had no problems during the birth or afterwards (a common time for MGers to have an exacerbation). Because of the Imuran I was unable to nurse Lily - and that really bummed me out - but in the end it was worth it as I was able to be fully functioning to meet all of her other needs too.

This past January I saw my doctor and he told me about a study that indicated that low-dose Prednisone was likely to be as therapeutic as Imuran. Well I was thrilled about that since Prednisone is pretty much totally safe for a developing baby and for nursing as well. I had also begun to fear I'd be stuck on Imuran for my whole life. So we switched - and everything was fine. Then I got pregnant for the second time.

And now the MG is active again. It's not terrible, but it's more prevalent than it has been in awhile. I'm not having trouble walking or swallowing or dressing or any of that stuff. But I am having a hard time focusing on my computer at work near the end of the day because my eyelids have started to droop. And smiling is a challenge when I've been talking a lot or late in the evening. Sometimes my neck gets sore and sometimes my fingers don't move at their usual speed over the keyboard. It's all bearable, but it also makes me sad and makes me feel a little fragile again.

I decided to write about it a little here to chronicle this part of my MG journey. Maybe my experiences will be helpful to someone else who stumbles across my little part of the internet (I'm constantly shocked at the google searches that seem to land people here!). Or maybe it'll just be helpful or comforting for me someday. Maybe Lily and her brother/sister will see these words some day and they'll learn something new about their Mom - who knows?

For now, we've upped the prednisone dose a little and I'm just hoping to get through the first trimester and over this bump. Things should improve in the second trimester, so fingers crossed. In the meantime life is a little more challenging - keeping up with work and the ever expanding needs/demands of my almost 2-year-old while simultaneously dealing with first trimester fatigue coupled with muscle weakness. So not the most fun I've ever had, but definitely worth all the effort. I get a little sad/frustrated when I think that I'll need to spend the rest of my life balancing out these medication side-effects with symptoms. It's frustrating now that Lily is going through a particularly clingy Mommy phase and I can't be there to meet her every desire for Mommy time because I need my sleep or I'm just not feeling up to full strength that night. But all in all, MG isn't a terrible disease - it's not degenerative and my version of it has been manageable thus far. So chin up - I'm coming up on 10 weeks - only a few more to go - second trimester here I come!

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