CIDP and Me - Is Anyone Still Out There?

So much for weekly (or even monthly!) updates... My apologies. I guess life just hasn't been all that exciting. At least, I haven't hit any milestones or breakthroughs lately.

The past few months have really been more about dealing with what I call CIDP 'residuals' or 'features' than the neuropathy itself. My legs have stabilized and continue to VERY SLOWLY get stronger. I did recently develop weakness in my hands, which really sucks but I'm back on prednisone, which seems to be helping. It's these residuals that were killing me.

I blame switching from 5 day IVIG to 2 day IVIG, though that could just be a coincidence. I switched to the 2 day course every 2 weeks in March and thought it was a great plan. It would only put me out of commission for a couple days and I would have more of my life back. However, my body is just not that absorbent. My blood pressure shot up and stayed there, I started getting puffy after the first day and, to top it all off, I got incredibly nauseous and lost all appetite.

Now, turns out I had H-Pylori (a stomach ulcer) to blame for the nausea. My doctor put me on the nastiest course of antibiotics ever and I discovered that I am allergic to one of them - lovely. Talk about the cure being worse than the disease... I spent 2 weeks eating applesauce and feeling miserable. When that cleared I got another infection - oral thrush. This caused more nausea. YAY. At least the drugs were not as brutal. Meanwhile I learned my thyroid is a bit out of whack and my pressure continued to be a  concern. I'm now on a lot of pills.

I decided to switch back to 5 day IVIG and do not regret it one bit. It is a pain but I feel better and am able to function even right after the treatment. We went out for lunch and ran errands a few times and I was able to do physio on the same day. I was not puffy or nauseous at all. My pressure is still up and I'm on a different med for it now - hopefully that will work. All in all, for the first time in months, I feel good.

Now for the CIDP and physio stuff.

I've been going to the pool once a week and love it! I walk lengths of the shallow end for 45 min or so and  it feels so good. The water is soothing and I can walk without assistance and without straining my upper body. I really wish aquatherapy was available here.

This week marked another change in my physio routine. The therapist I had been seeing took another position so I am now seeing the neuro-specific therapist at the hospital. We had our first meeting yesterday and it went well. I told her I really want to work on sit-stands so I think that will be a focus. She did a quick assessment and we went for a little walk. I'm feeling good and hopeful about the change. I know not to expect miracles but a fresh perspective is always good. I think I'll be seeing her twice a week.

In other news, I am buying a wheelchair. I really hoped to not need to, but it is what it is. I ordered this kick ass carbon fibre chair that is a little more than I was planning, but worth it. Don't get me wrong, this isn't an Olympic style sporty chair or anything. But it's lightweight and comfortable and easy to maneuver. If I'm stuck in it for now, might as well be comfortable.

So there it is, a long overdue update. I am looking forward to the weather (hopefully) warming up and getting outside a little more. We have plans for the park tomorrow. I'm also working on just getting out and about more. I need to get my life back and stop living as if things are on hold. Disability or no, there is no reason for me to be a shut-in!

Ciao for now!