First post-HSCT haircut today! My hair has been growing in crazy directions I had no idea how many cowlicks my hair had! I will have to get used to getting regular haircuts. I think I was like 30% gray before HSCT and now I’m like 70% gray but that’s okay with me- at least for now.
I went to my neurologist on 11/1. He was impressed with my improved leg strength and balance. I could walk the straight line with my arms flailing but i didn’t stumble or hold on to anything which is a major accomplishment. He also noticed my hands are still a bit weak but much stronger.
He was also glad I was able to D/C so many meds. The only symptom meds I’m on now are baclofen and antivert for spasticity and vertigo respectively. I decided to d/c ritalin even though I’m still tired because the estroven I’ve been taking has something in it for energy and I was feeling weird. I also D/C vitamin B12 because I was getting this strange disappearing rash and I was listening to the tv show The Doctors and they were talking about how too much B12 can cause a rash or other issues so I thought I’d stop it and see what happened and sure enough it stopped. I’m still taking vitamin D.
My 6 month follow up appointment with Northwestern is the 3rd week of this month. I’ll get another MRI done and meet with Dr. Burt and hopefully hear no new lesions! I’m feeling better everyday so I’m expecting to hear remission. I heard from others on the facebook page that they’re no longer giving out EDSS scores (expanded disablity scale score). So I looked up the scales on my own to try to score myself just to see my progress. Pre-HSCT I was 4.5. I beleive I am now at 2.5 which is pretty remarkable improvement.
For those of you looking for the forms here’s what I found:
Click to access 10-2-3-29-EDSS_Form.pdf
Click to access 10-2-3-30-Functional_Systems_Kurtzke_Form.pdf
I’ve started to gain more energy and started going back to the gym! It feels really good to strengthen my muscles. I’m doing some cardio too but I get tired and dizzy so I’m only doing 30 min cardio and 15-20 min strength training.
As for how I’m feeling now….I’m still very tired. I beleive that the meds I was taking for the everlasting respiratory infection were making me tired so I stopped those as it’s almost cleared up. I have cracking in my ears from clogged eustachian tubes but it’s slowly improving so I’m going to give it more time. I also have this weird texture sensitivity to fabrics, especially at night, so I’m constantly applying lotion to my hands/feet and arms/legs. My neuro doesn’t know what that’s about. It’s not as frequent as it was but it’s uncomfortable and just weird. My joints are still cracking and hurting….this week I couldn’t straighten my arms as my elbows were painful. They are much better now but still hurt. I try to keep moving as much as I can but it’s very hard when you’re stiff and hurting and exhausted. So I pace myself. I’m slowly better everyday so I’m grateful for that. My memory needs improvement and I’m hoping that will improve.
I’m still having menopause symptoms…..I’ve started taking estroven that I bought at costco and it’s helped a lot. I’m having less than half the hot flashes that I was. I’ll be going to see a functional medicine doc next month for a bioidentical hormone and thyroid help. For now I’m mostly uncomfortable at night but I bought this cooling pillow at costco and it does help. The instructions say to air it out a few days before using it and I agree…..it’s also a little hard at first but it softens with time. At first I was still getting hot and would turn it over to the other side which is also cool.
So….I’m still on the “roller coaster” which I will be for awhile, but I wish I was functioning better and faster as I’m anxious to return to work.
Lastly….it’s been fun to see others in the Chicago HSCT pages celebrate the Cubs Victory as they now consider Chicago their 2nd home. I’ve never been a sports fan but as a Chicagoan I’m proud of them….and I’ll always remember 2016 was the year the Cubs won the world series because it was also the year I won with HSCT.
Tuesday is election day…..please vote for candidates that support regnerative medicine and affordable access to healthcare.
Thanks everyone for your support!