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.

CIDP and Me - Feeling Ambulatory

Time for a good news blog post I think! The past few weeks have been really good so I thought I'd share... I still don't know what the plan is for treatments now that IVIG is off the table, but in the meantime I'm making the most of my physical improvements and Prednisone-induced energy. I call it the 'Predni-Zone' (cue the music for Kenny Loggins 'Danger Zone').

I no longer need to take the wheelchair out of the house. Hopefully ever, but definitely for the foreseeable future. I still use it for a few things around the house (sweeping, middle of the night bathroom trips) but it is collecting dust and laundry much of the time. I can even manage to get around a little bit without the walker - as long as there is a counter, chair, wall, or Scott to hang on to. My new braces are no longer a hindrance and are really helping me learn to not stand with locked knees. Heck, I'm even getting some observable muscle tone back around my knees!

As a result of this new strength and confidence I have been checking off milestones both in and out of physiotherapy. In physio I have improved my score on the Berg Balance scale from 21-28 (in two months). This may not mean anything to my non-physiotherapist friends, but it's a pretty big jump (the scale is from 1-56 with 20-40 as the 'walking with assistance' range). In the spring I scored 17. She didn't tell me we were doing the test this time so I couldn't even 'study' (practice) ahead of time...

This is not the only milestone... I started using the treadmill this week! Yes, a moving sidewalk, and I didn't fall off! I have used it 3 times and am up to 8 minutes with a whopping 0.6 resistance (I'll be running in no time:)). My physiotherapist would not let me see the resistance or time the first day because I am apparently too competitive with myself... tee hee. So that's fun. The other new thing happened yesterday - I stood on the bosu ball for the first time. This is a half-exercise ball with a flat top used to improve balance and challenge every muscle in the legs and core. It kind of reminds me of pogo balls from when I was a kid. Course, I was never very good on those either. Anyway, it went better than expected (I did not end up in the ER or on the floor). I used the bars to stabilise myself and had 2 spotters hanging on to me. It will be awhile before I can stand on it without holding anything (let alone use it for squats). But still, I'm excited that we can even try it.

Our other main focus right now is slowing down my unassisted walking. I am a bit of an anomaly here as apparently she spends most of her time helping people walk faster. In my case, I go fast and rely on momentum to keep me up instead of my muscles, so we need to slow down and work on control. I can't get away with anything;)

Things are going well outside of physiotherapy too. I mentioned my outing to Louisbourg in my last post. This was a catalyst to get out more and more. I walked a kilometre or so with my brother and his girlfriend last week on the boardwalk at Dominion Beach. Two days later we all drove up the Cabot Trail to Ingonish and I did a little walking at the top of Smokey and Wreck Beach. I'm getting much more comfortable pushing my walker through gravel and up and down small hills. Last but not least, I reached a major milestone on Wednesday - I walked down the (steep) driveway and accompanied Scott and Barney on part of a dog walk! Walking the dog is one of my favourite things to do and I miss it terribly. It used to be how I cleared my head each morning and readied myself for the day. I can't handle the dog yet or go very far, but I'm getting there. I'm going to try to do this as often as possible to build up my stamina.

So there you have it. Only good news for a change:) Hopefully the improvements continue but I'm just taking things a day at a time and not stressing about what-ifs at the moment. I see my neurologist next week to figure out what's next for treatments and will post again once I know more about that.

Happy Labour Day Weekend!