CIDP and Me - Sometimes there are Good Weeks

I know, I wrote last week, how can I possibly be updating again so soon?! Well, I had a really good week and feel like sharing. Plus, I don't want this blog to be all doom and gloom and hardship, so I will take a few minutes to dwell on the little positive things.

I LOVE my new physiotherapist! She is absolutely fantastic and has kicked my motivation into hyper-drive. We've had 3 sessions now and are already seeing improvements. She is focusing on walking and sit-stand in our sessions and leaving most of the stretching and bed exercises for Scott and I to do at home. This is great as it really maximizes our time together. She did do a full assessment of my home program on Monday and made a few changes. Scott was with me for that session, which was a good thing. I was pleasantly shocked to find that I can do a few exercises that were still pipe dreams when I left rehab. I knew my legs were stronger, but didn't realize how much progress I actually made. Yay me! So physio is great. I am seeing her twice a week and feel really good about it. I've also been even more diligent with my home program. I really feel like I can and will get out of this chair. It's a nice feeling.

The weather has finally warmed up here and that is also helping my mood. We've been out a little more - I'm like the dog or a toddler and, if I'm good, we get to go to the park and then have ice cream:) We also went out for supper with some friends one night and managed to do a number of errands. Nothing too exciting but it is nice to get out.

One of the positive side effects of this whole experience has been weight loss. Much of it is muscle atrophy, but enough was good ole fat that I'm feeling good about it. I do need to work on my abs a bit though. Anyway, not to brag or complain but I have lost about 40lbs since this all started last Spring. This means that my clothes do not really fit anymore. So, after months of procrastination and delay, Scott and I hit the mall on Friday morning to restock some essentials. It was relatively painless and we ran into a couple work people, which was nice. I've finally reached a comfort level where I'm happy to run into people rather than nervous. I know my condition is a little discomforting for people when they first see me, but I'm the same person, so no need to hide.

On the home front my increased energy means that I am re-assuming an active role in the household. I can't do everything but I can tidy up and dust and fold laundry. Organization and making sure that things I may want are reachable is really important and can easily become messy piles of junk everywhere. I cleaned the shit out of the living room today and my Virgo sensibilities are finally sated.

The only negative thing that happened this week (well, other than the Brexit - WTF UK???!) is what I call a first world CIDP problem. My hands are too weak to crack open a new screw top bottle of wine. Sigh. Scott took care of it when he got home though and I have since ordered some jar opener gadgets from Amazon. Rest easy, wine is back in my blood stream (in mild-moderate amounts, of course).

So there it is. Sometimes it is possible to stay positive and motivated and to put aside the crap and enjoy the day. I hope everyone else is having a great week too.

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!