For the first time in weeks, I had eight hours of sleep this past weekend. Unbelievable (like, woweeeeeeeee!).
I’m very happy to report I feel like I’ve turned a corner after the crazy plummet from the Rituximab.
As for daily medications, I’ve set up a new routine, so to speak. Admittedly, it’s a lot more than pre-HSCT, but until things smooth out I want feel relief during the day. It really makes me rather woozy and tired, dry mouth, etc., but whatever 😉
I took inventory of my improvements post-Rituximab:
1. Zero night sweats
2. Zero itching anywhere on my body
4. Zero rashes and all scabs completely healed everywhere on my body/scalp
3. Zero bladder pain and no more ‘hot poker pain’
4. Extreme bladder urgencies have resolved and back to baseline pre-HSCT
5. Bowel functioning at baseline pre-HSCT
6. Crushing headache now just a regular headache
7. Swollen toes/feet/legs/body: almost 100% resolved & dropped 10lbs of fluid
8. Cognition: almost able to think/converse at baseline pre-HSCT
9. Only a small amount of dizziness (due to low RBC’s)
10. Stopped all medication for bladder issues
11. Zero mouth ulcers
WOW. This is huge, right?! I’m (very hesitantly) excited as to what things might look like 4 weeks post HSCT. As for walking, I’ll do a video soon to see where that’s at.
Food-wise, things are strange. I’m craving curry chicken and/or dinner items for breakfast. Then hours will pass without thinking about food, then WOWZA, I’m in the kitchen rummaging for anything I can get my hands on.
I met my (new) overseeing Hematologist on Monday at Vancouver General Hospital. He was brilliant (Dr. Song). Between him, my MS neuro and my GP (PCP) I feel like I have a super supportive team overseeing my recovery.
Seeing the results of my labs from yesterday, things are really bouncing back fast. Once my red blood cells are back in range, I might even have more ‘energy’.
I’m glad to hear you got a full night’s sleep. It’s funny how we don’t appreciate these things, until we don’t have them. It really makes life difficult when you’re constantly running on E. I’m glad to hear about all of these improvements. I would love to know what your post care vitamin list looks like. 🥰
My appetite has also been insatiable since HSCT. I’m sure after time, this too shall pass. Our bodies are doing all they can to recover. After all, how does one recover from an “incurable” disease. 🤔 I’m sure there’s no playbook for this. 😂
Oh Jenny Girl – I could cry (hesitantly of course) with relief. Onward and upward – just your style!!
I’m so glad to read about your improvements and progress my sweet friend. Sending love, light, and continued positive healing vibes. ❤️
Wow! How well you have progressed!
Fantastic news JB! Onward and upward XOX