Thursday, December 10, 2015

Wheelchair Kamikaze: Bits and Pieces: MS Diversions: MUST READ!

Awesomeness of this blogger gets me... alwayz!

Wheelchair Kamikaze: Bits and Pieces: MS Diversions: Wow, I just checked and it’s been almost 7 months since I last did a “Bits and Pieces” post. These posts, compendiums of the latest and gr...

WOW it's been a long time...

.. so long so much has changed. I'm no longer on Plegridy-- frankly, the side effects were getting much in the way of work and relationships. I came within a minute of snapping at my boss, whom I adore, and I had already been  on the verge of throwing things at the S.O... and the joints had been a-paining me pretty badly. So I went off it in October, right after my birthday, and I feel much better. an MRI at the end of the year will tell me what if anything has changed. Fingers crossed for Ocrelizumab getting approved next year.

I'm enjoying the fall, though, even if my fatigue tends to be getting in the way of a lot of stuff. I'm only now realizing how very tired I am by the afternoon, even with Adderall to keep me up. Just keeping me awake doesn't mean I'm focused or better at thinking. I also dropped out of a research study on online games and cognitive skills-- I was nowhere near as cognitively disabled as many others, but that doesn't mean I don't feel every lost word deeply. I work with my brain primarily and always have, so the little things like missed words or forgotten trips to the kitchen are paining me an awful lot. I still do read a lot and quickly, but in conversation I feel much stupider.

Overall, I'm fully aware I have been much blessed in my relative lack of disability that can be seen. I have my crip placard and plates for parking, and I use them, as I have come to realize I damn well need to conserve all the energy I can in any way I can. I still have a bit of a limp and on and off use a knee brace or two, but the main issue I am concerned with is cognitive loss, which, apparently thanks to my loooong education ride and mental exercise, is not bad in comparison to others at all.  Well, tough, because when one DOES work with the brain as a major job tool, it's really easy to sense the tool getting rusty.  That has been the thing making me feel most old as I hit mid-forties. Sometimes I feel that if I could just need a wheelchair, I'd be able to cope with changes and frustrations better. There's nothing I can do for my brain I'm not already doing (yes, food, mental stimulation, vitamin D.. trust me, I KNOW the drill) so I think that's why the cognitive lapses are so frustrating. I plan on tying a paper organizer, smartwatch with alerts, my smartphone, and my outlook calendar all together to help me organize and stay on track better and with less "grrr!" moments.

We head to the holiday break busy but overall okay. Lots of vet bills recently, but that's the price I pay for being a cat parent and I would never not have cats! Wishing whoever might read this a peaceful autumn/winter season, Merry Christmas and Happy Hannukkah (to those celebrating), Joyous Kwanzaa, Happy New Year! (Cause at this rate, I'll update again in like, oh, March...)

Sunday, March 15, 2015

Random birthday blog

Happy birthday to two brothers, a cousin, and two cat-kids! I'm astonished how many relations were born in March. Hmm. I'm the only member of my immediate family born after summer.

In other news, I have hit my three month Plegridy point! It seems to be working, though now that nerve pain problem seems to be from bone spurs in my neck, not my MS. When it rains it pours!  Trying rehab for it, but things are busy here. Spring break was not long enough!

Tuesday, February 17, 2015


...kinda works... this revamp of Avonex is only taken 2x a month (every 14 days), and interestingly the side effects (flu-like feelings) seem to extend longer than the one you inject once a week!

Go figure. But I started it in Dec 2014, and I guess it's working okay. I've developed more irritating physical issues (neuropathy, muscle aches) but my mind seems clearer. Also, the newness of it somehow means I can get it generally free from the drug maker for now (based on income, etc), so really other than the shock of the new, what have I to worry about? :)

I guess everything is stable, though I may be developing other issues concerning neck nerves--lots of irritation on right side. Icing it for an hour before sleeping helped, though!  We'll see what my "new" primary care person says about it--I have not been to a primary care dr since I got back to Texas, except for an 'urgent' issue of infection.  I guess it was overdue to find one.  Really, aren't neurologists generally the primary care doctors for MSers?

**Update-- as of October 2015, I came off Plegridy-- joint pain, anger issues were getting waaaay too much! I'm gonna hope for Ocrelizumab in 2016--I was in the Phase II clinical trial for that and it was WONDERFUL.