Living with CMT, Day 14,833
LIfe has a little of thisAnd a little of that Last Monday Anika woke with a fever. She tried to go to school on Tuesday but called for me to pick her up. Had to stay home Wednesday and Thursday because she was sick.
Meanwhile, we received final edit proofing pages for our Forest Fairy Crafts book. The release date is only a few months away. Deadlines are tight. That big project needs lots of attention.
I took Friday off of teaching to try and get my equilibrium back on track. I just want this pain to subside, in my hips from walking with a modified gait to accommodate this ankle which is still healing from last summer's bone bruise. I am such a mess. Way bigger than one day to fix it, but one day could at least help me pace through proofreading and catching up with marketing plans for the book.
Then Ian walked out that morning with rosy cheeks. No, no, no!Sure enough, he caught the fever. Since then, he's been dull-tired or wired-wild. He's stuffy and coughing. And not going to school. I've had a kid home every day while I juggle this big project for the book. And since they are sick, I don't want anyone else to catch it. My husband has his very busy work schedule.
Time to get creative. We are good about that. They give me little breaks to work on the book. I am mostly done with the proofreading. The book looks beautiful. The colors and layouts are gorgeous. I can't wait to share it with the world.
While all of the parenting-sick-children while managing school-emails while editing the book, CMT of course demands attention. I had a major flare up day on Sunday. For no good reason. I can understand if I was active or busy. But I was here with sick kids (had to cancel weekend plans which was such a bummer!). Why oh why was I off the charts hurting?
I don't know. It subsided on Monday. Thank goodness. Still painful, but manageable.
Today was my annual neurology appointment. In my teens and twenties, I rarely visited doctors. I went every few years to check in. Nothing major. My crash happened when I was 32, with arthritis in my feet and numbness in my hands. I started yearly visits. Last year they bumped up to every six months as we try to outsmart the chronic pain.
I have seen the same neurologist for the past eight years. He is kind and genuinely wants to help. Though we all say that there isn't much that can be done. He tracks my progress (my degeneration) and refers me to specialists who can help with symptoms.
I have seen this office manny times by now. What amazes me is how we chart a path for this disease in about thirty minutes. I share my latest symptoms- today it took awhile. He does a few tests for strength or sensitivity. One measurement is that he uses a pin and touches my foot. "Feel that?" He goes up my leg until I feel it sharp instead of dull. He doesn't prick the skin or anything, just a light touch. I am fascinated by how sensation changes in my legs and feet. There is a line were it goes from mild to strong. Over the years, the line keeps moving up my shins like a slow tide.
Today he assessed arm strength by asking me to resist motions, like pushing my hands together, or pushing them down. He had to stop me from compensating as he had me bend my arms at the elbow and he pushed gently on my forearms. I instinctively leaned into the motion so my shoulders could hold up my arm. By the time he got to my fingers, though, pushing them together while I tried to keep them apart, I couldn't even compensate anymore.
It's a talent and trouble with CMT. We are brilliant at compensating for these weak muscles. Other muscle groups step up to carry the load. They aren't intended to work so hard, though, so they tweak joints or get inflamed or exhausted. I look more capable than I actually am capable of achieving. It's a tough gift.
He noticed definite weakness moving away from core muscle groups. He has me squeeze a grip strength measurement. This year it was 13 kilos. I'm pretty sure it was 15 last time. By the way, I just checked online and every site I found said that anything under 22 kilos was poor/very poor. I am off the charts in a bad way. Again. *sigh*
The we tried figuring out my hip troubles. Sure enough, my gait is a mess. He thinks that getting a better gait will solve a lot of the stress-pain in my legs. I'm calling a podiatrist tomorrow. Maybe there is technology (new orthotics) to help me have a more natural walk. I'm still recovering from that injury last summer. One ankle is stiff so the other leg compensates. See? Compensation is a gift and curse :)
Okay, tired now. The other nice thing he said was, "You must be exhausted. Your muscles are working hard just to get around."
Validation is a wonderful thing :)
We're trying the referral along with short term medicines to help with sleep through the pain until spring arrives. I see him again in August.
CMT is rarely the spotlight in my world. My family, my dreams, and my creativity take center stage. Yet I must give CMT respect. And attention. And TLC.
I am hopeful for better days ahead. I thought I'd share the appointment for those who are just hearing a CMT diagnosis or who are curious about what treatment for CMT looks like. Pretty low key in my case. Now I'm curious. Do other people have similar experiences as they monitor CMT over the years? What happens with your neuro-appointments? I wonder... :)