I’ve been missing. I don’t remember exactly what happened…and then…well, life…I hope not to stop again. I know that I’m playing with ur emotions – please forgive me! There’s good news though, this time is different to times in the past when I stopped writing. This time there’s no link to how the ms was behaving nor can I link my not writing to ms in any way.
So in the past 10 months I’m happy to say that things haven’t changed too much or very drastically. As far as my physical disability – with respect to my walking and that left leg of mine? Stability…no improvement but no degeneration either…I continue to use CBD Oil and I have good days and not so good days when for whatever reason, the leg fights me and people who try to bend it or my walking seems very laborious. So my lower extremities are okay. What has worsened, is my hand. Used to be that my fingers would curl up so that the left hand looked like it was always in a fist (of sorts). Well now, my thumb regularly bends in, but not over the fingers, under them. So picture, if u will, u put up your 4 fingers (with the thumb across ur palm) and then u bring them down. That’s what my hand looks like regularly and the fingers and thumb are all weak so opening the hand to do anything I need/want to do gets challenging but I make whatever I need to do happen. It was the one thing that Rebecca, my Occupational Therapist, noticed from jump when I started therapy 10 weeks ago…but that’s a story for another day.
I know that I mentioned before that I’d planned to look into moving over to the Shepherd Center as a regular ms patient. I’ve been attending outpatient rehabilitation therapy for 4years and it’s closer to home so it made complete sense to me. The day that I talked to my neurologist about using CBD Oil and he told me that the MSCA had made a decision that, as an institution they are not going to support or promote patients’ using it was the proverbial nail in the coffin and I talked to my therapists and got the paperwork to make it happen. Filling it all out was easypeasy and I submitted it…couldn’t wait to get started over there and then I got the call. “Hi Stacey. Thank you for your interest in becoming a patient but unfortunately it’s not going to happen.” Turns out that Shepherd doctors do not put their patients on Lemtrada so they cannot support it in any way so since my last ms medication was Lemtrada, I was disqualified. Steups!!! Maybe in 2021, I can try again…I say that because that’s when the Lemtrada monitoring is supposed to stop…who knows🤷♂️.
Anyway, that’s it for now…I’ll be back…same time next week!