Heading into YEAR 9 POST-HSCT on a mission!
That’s right. Last month was my 8-year anniversary of the HSCT (hematopoietic stem cell transplant) I had for my MS in Moscow, Russia.
8 years of no injections, infusions, drugs or treatments related to halting the progression of my MS.
8 years of my MRIs looking just like they did in 2013. Hell, I rarely went 6 months without a change (growth or enhancement) in lesion status PRE-transplant!
Have they been 8 blissful years with no setbacks or bumpy side roads of issues? Umm, that would be a big fat NO.
My struggle with debilitating trigeminal neuralgia yanked about 4 of those years right out from under me. 3 surgeries in 3 years, topped off with cranial surgery, was not exactly what I’d call a “highlight”. BUT, I’ve had a solid 1.5 years of no pain since that last invasive surgery for which I am grateful every freaking moment of every day.
Yes, my old symptoms will flare if I have even the most low-grade infection (with or without a fever). Your MS knows things…sneaky bastard that it is, even before you do.
I’d be lying if I said the immobility in general during the pandemic hasn’t kicked my ass. Not moving does not equal sustained levels of strength. Am I the only one who sat on my ass for the last year waiting for some type of update on the planet and said screw it to exercise?!
So, the mission. My mission as I celebrate my 8th stem cell birthday is as follows:
- To continue advocating for MSrs seeking info on HSCT
- To continue co-hosting the @themsgympodcast and collaborating with advocates within the MS/chronic illness/disability space
- To put continued effort into bringing to market the stylish mobility device I created for people just like me who have balance/mobility issues. **Confession…THIS IS #1 on my list. Want more info, hit me up.
- To have and show gratitude on the daily for the opportunity to have had HSCT