CIDP and Me - Sometimes There Are Bumps Along The Road

Overall it has been a pretty good start to the fall. I turned 40 (eek!) a couple weeks ago and had a good time celebrating with friends and co-workers. Forty is pretty surreal to me as I barely feel like an adult most days. But, I'll take it. In terms of my health and recovery, I continue to stand up every day (either at home or at physio) and my legs are still gaining strength, mobility and muscle mass. All of these things are fantastic and I do not want you to think that I do not appreciate how far I have come. I really have and it's great and encouraging.

However, it is not all good - as the title of this post implies, there are bumps. I'll start at the bottom - my feet. Oh how I loathe my feet. They are a numb/tingly/achy/burny/freezing constant reminder that all is not right in this temple of my body. As my nerves reconnect, my feet regain feeling and this is not always a good thing.  It took me about a year to understand what is meant by 'neuropathic pain' and to admit that I experience it. It is very different from 'regular pain' and no one really describes it well, at least not that I can find. I have been trying to write down what I am going through in detail and may post that eventually. It comes across as a little too scary I think, so I'm holding off for now. That said, I am not wallowing in silence - I asked my doctor about meds to help today and am going to try Lyrica for a few weeks and see how it goes. I hate to add more to my daily  chemical cocktail, but I think it is necessary.

Moving up, we come to my stomach. This week I realised that my stomach can no longer handle Ibuprofen. Sigh. I like Ibuprofen and find it much more effective than Acetaminophen for most things. However, if I take more than a couple a week I suffer with stomach pain and nausea. The absolute last thing I want is to end up with another stomach ulcer, so I have decided to give up on Ibuprofen and look for other ways to soothe my achy muscles (heating pads, stretching and wine).

Continuing along, we come to my hands. My hands are favoured about as much as my feet these days. As you know (if you've been following my blog) my hands started becoming weak several months ago. To curb this I was placed on a weaning dose of Prednisone, which seemed to be helping. I have been seeing slow but steady improvement in strength and was feeling pretty good about it.. Heck, I can even open a can of pop or beer all by myself now. So imagine my distress a week ago when, in the middle of choir practice, I noticed that my right index finger was becoming fuzzy (the technical term) and more and more paralysed. I tried to convince myself that it was tired and a result of over-use as I had spent a fair bit of time on my computer that week. I rested it over the weekend and promised to call my neurologist if it did not improve. Well, it did improve a little but did not go away and by Tuesday my left index finger and thumbs had joined in the fun. Sigh. I made the call and am glad I did. He thinks it is likely a carpel tunnel thing as there is a lot of pressure on the few connected nerves in my wrists, but does not want to risk anything, so suggested a two-fold solution. First, I am to up my Prednisone dose and wean bi-weekly instead of weekly. I kind of expected this and it is a lesser of two evils, much as I hate the idea of longer term steroids. Second, he wrote me a prescription for carpel tunnel splints that I am to wear whenever I am not doing anything. Scott has decided my new nickname is 'Splinty' as I already sleep with splints on  my feet. Maybe one day I can add a mouth guard and neck brace into the mix to complete the nighttime bondage...

In more positive news, physio continues to be great and I am still making improvements. I am sitting down with much more control, which pleases everyone. For the longest time I sat down like those old toys with elastic joints and a button on the bottom - you pressed the button and they collapsed. Now I can slowly lower myself in a controlled motion. I do still rely on my arms, of course. As I mentioned at the outset, I am standing both at home and physio. At home we set the walker up against the counter (right in front of the kitchen sink, which I believe is a not so subtle reminder of the household duties I no longer partake in) and I stand and sit 5-8 times in a row. It feels so good to be on my feet and it gets easier each day. I am also now able to use the walker to transfer from my chair to the bed or recliner. This is more involved than what I have been doing so I don't do it every time, but it is a step in the right direction. The next progression will be to use the walker to walk a bit at home. In physio, we are working on building endurance with the walker and balance in the parallel bars.

So there you have it - you take the good, you take the bad...