muscle building

Alice actually went to have a Thai massage yesterday, you know the kind where you feel they should be paying you – not you them – for inflicting such pain on you ? Well, Alice used to love going to this place, but with the onset of cidp and the pain from her neuropathy, the last ones she got were excrutiatingly painful. Yesterday she loved it. And she felt it helped with her muscle pain. Going back on Sunday.

We saw a wonderful neurologist this week, Dr. Belaga.. I never thought I’d put those 2 words in the same sentence, “wonderful” and “neurologist”. Alice found him on yelp.com – after being so exasperated with the meeting with Stanford neurologists (pretentious and non-receptive).

Dr. Belaga feels that Alice’s pains stem from her muscles rebuilding. He was very impressed with her reflexes : her legs kicked right out (this is absolutely amazing !) – very weak reflexes in the ankles, but he said that seeing how they’ve come back in her knees there’s no reason why they shouldn’t come back in her ankles, they just take more time.. He suggested Alice try a med called Savella for her muscle pains – this is usually given to fibromyalgia patients who have chronic muscle pains. For now she hasn’t started them because they do have a whole list of side effects including nausea and sweating.. she doesn’t need this ! (The chemo has put her into menopause for now so she’s already been battling with hot flashes.)

Alice will be going to see a physical therapist to help with this healing process. Looking forward to getting tips on how to increase her strength and work on her weak spots.

She gets a bit impatient sometimes because she wishes the healing process was quicker – she still gets tired early but much less than 2 weeks ago, and the progress is clear. Her energy level has improved : now she’s going to bed at normal times again, and is eager to go out every day. She still can’t run a distance, but her stability and strength have noteably improved and continue to do so. We go out for a walk every day, and 2 days ago we went to do our exercise on the Vallejo street stairways.. Walked up all the way, with frequent stops (Alice’s pulse was high – I guess her muscles are needing a lot of oxygen to build back up), but she made it all the way up. It really is amazing to see these improvements.

The weekly blood results have been markedly improving from one week to the next, and counts are almost back to normal.

Right now she is playing on the Wii, bowling with our housemate Judie – she says she should make her avatar bald… Actually, her hair has just started growing back, but you have to look very closely.

A month ago there’s no way she could have made movements like this.

It’s very exciting to watch her progression…

There is absolutely no question in Alice’s mind that the stem cell treatment got rid of the CIDP, and any pain she is feeling now is linked to her healing and muscles rebuilding.

We’re going to spend Christmas with friends up in snow-covered mountains in Arnold (3 hour drive). We look forward to it, and going for walks – we were there last year – but Alice didn’t have the strength then to go for walks.

Wishing you a cozy and fun-filled Christmas with your loved ones.

🙂 sophie