CIDP and Me - The Waiting Game

UPDATE: If you post it, they will call? I got a call within hours of posting this and have an actual plan... Still, enjoy the rant:)

Waiting. I hate waiting. There is nothing that makes one feel less in control of things than waiting. Especially when waiting for something that is truly out of one’s control. This is a little bit of a rant/vent that sums up my month. I am waiting, not always patiently, to find out what is happening with my treatment.

I met with my neurologist at the beginning of September and left with a shiny new plan of attack – subcutaneous IG (SCIG). This is the same blood plasma product that I received through IV for 2 years but, instead of IV, it will be given through needles into the skin. This may not sound appealing, but my tastes (and fear of needles) have changed over the past two years and it really isn’t so bad. The best part is that if this works I can eventually do it at home! But I’m getting ahead of myself...

SCIG is a relatively newly approved treatment for CIDP (oh the acronyms) and it seems that I will be the first person in Cape Breton to receive it. That is if I do receive it... It’s all still up in the air (the waiting). My neurologist wanted me to start right away (I met him on a Friday morning and he thought I should start the following Monday). I knew this was unrealistic, but we got the ball rolling. The idea is that my first treatment will be in the hospital in case of reactions. So I left it in their capable hands and started waiting.

As I mentioned, this is a new treatment to them so they had to do some research and talk to the people in Halifax who have experience with SCIG. Hence the waiting... I have had a few cryptic unofficial updates (waiting for call-backs, received call-back waiting to talk to neuro...). I have also left a couple messages asking for updates. My understanding is that they are worried about the timing of potential reactions as it could happen a day or two later. I did receive one official call about it last Friday, they told me there was more paperwork than anticipated and promised a call-back as soon as they 'know anything.' So I wait.

As I wait I go a little crazy. I am becoming far too hyper-aware of everything in my body. Is that ache or numbness new? Is that weakness or just fatigue? Are these tremors from medication or CIDP? So many questions festering and turning me into a self-obsessed hypochondriac. It’s not good. I try to distract myself but it’s tough. Meanwhile, I wait.

I don’t think I have regressed physically or functionally, which is good. I am definitely more fatigued and am experiencing more numbness and tingling. I feel hungover all the time without the pleasure that should precede it. Then there are the tremors. My hands have been shaky for months but it has now migrated to cover my whole body. I feel like a tuning fork. Scott was even able to see my stomach quivering through my shirt last night. Good times! Stress? Maybe. Lack of IG? Maybe. Too much Prednisone? Maybe. Who knows. I don’t like it. But I wait.

I know that I will hear when there is something to hear. I know that the powers that be are working on it and just want to make sure that things are done properly. I get that with any new drug there will be new protocols and procedures. I understand that these can take time to figure out. I also understand that calling me with no actual plan is unlikely. But it would be nice to get a little official word once in awhile – “Hi Gwen, we know this is taking a long time, hang in there we’re on it.” I say official, because I am getting unofficial messages like this when I run into people at the hospital and around town – and I do really appreciate these! I hate being a clanging gong and a pest. I hate calling and leaving messages every week. But, for my own sanity I need to. I refuse to fall through the cracks on this one. So I wait.

They say patience is a virtue. Heck, even I wrote a big long blog about patience a few months ago. Perhaps I need to revisit that post and follow my own advice. It will all come together eventually. Of this I have no doubt. Maybe I just need to spend a little more time practising yoga or meditation and a little less time stressing and obsessing. But until I hear, I wait.