I’ve been home almost two days, it’s awesome sleeping in my own bed and just hanging out. I’m feeling ok considering I think, but my plans of hitting the ground running are probably going to take a little more time. I can tell my body is just really fatigued and is going to slowly need to recover. I was tired walking today……to the kitchen;). I’m feeling pretty nauseous from the medication I need to take while my system rebuilds so it’s a work in progress. They say it’s kind of a roller coaster for about 6 months getting back to normalcy but I’m hoping for it to be a bit sooner that that!
There is a lot of good news to report regarding the MS side of things. The chemo or the re-boot, I don’t know know which have definitely at least this week and last completely arrested any symptoms. I can feel the top 1/2 of my head which I haven’t in months (I know that’s weird but I got used to it), vision is clear, my hands are not shaking, my right arm has full feeling, knee isn’t buckling. I mean I can’t speak to the fatigue because with everything that is expected but I would be thrilled if there was even a little improvement in that over time.
MS is a really confusing disease. It’s like the outside of you looks perfectly normal to everyone but your body internally is misfiring and you’re trying to sort of just deal with it as it comes each day. I was relapsing about every 12-14 weeks, and it was so scary. Every time we went to get an MRI, it was progressing even with the most efficacious medication out there approved by the FDA and the best docs. The last time I went to the neurologist at UCSF I just kept asking how long until I can’t walk or I’m in a wheelchair at this rate and they said because of how the lesions present almost entirely in my spine, any relapse is a chance of that. It could be tomorrow, it could be a year from now, could be never if the meds start doing the trick……
After researching, I asked about HCST trial in Chicago as an option. The first neuro said to do it if I wanted to die, the second told me I’m going to age internally rapidly, and the third conceded I was a perfect candidate to get the full benefits but there are risks. 3rd time’s the charm!
So I’m glad I did it even though I don’t feel awesome and have a little road to recovery. I have a good chance of never relapsing again, completely having halted the MS indefinitely which would be a near miracle (and what people are calling it). I have a great chance of 5-10 years without dealing with this at all and either way it is way better than what I was looking at. Not going to waste that time!!!
Jennie's MS Journey 