slip slidin’ away

i thought i had a neuro appt. for today, but it is for tomorrow. after a year and a half of not working, it gets harder and harder to remember what day it is. and harder and harder for it to matter.

but in preparation for the appt., i wrote up a little list of issues to discuss – i never seem to be able to maintain the proper clarity of mind when i am sitting in her office and “on the spot.” i must say that there doesn’t seem to be anything truly specific that stands out, nothing i need to ask for help with. my sleep patterns are a mess, but i’ve never been very good at sleeping. aches and pains move from here to there, and seem to come and go with no rhyme or reason. i don’t seem to have any of the official listed side effects on the medication i am “loading,” Mycophenolate, though it seems maybe the insomnia is a bit worse, but other meds i take can cause that, so who knows. and i have trouble getting comfortable in bed – though that might be old age, or being fat, or maybe it’s the bed. i usually have to wait until i am already 3/4 asleep before i get into bed. (i have tried to stop trying to pin down the cause of each little thing- ache or pain – because there are so many variables, so many possible causes that i just don’t see the point.)

and i am looking forward to re-trying LDN, as soon as the loading of the Mycophenolate is done,. i tried it before, with no effect, but i have heard recently that it can take 6 months to a year for it to work. it is the only treatment i have heard of that suggest more than just “symptom management,” but offers the possibility of real improvement, and perhaps an end or even, in a best case, a reversal of the s-l-o-w downhill slide of multiple sclerosis. no clinical data seems to be availble, because the drug is so cheap ($35/month) that there is no financial incentive for anyone to study it. too bad the way our drug industry works (don’t get me started!) but so it goes. so i should be all ready to give LDN a more patient trial by the end of july.

and i have a new twist on an old hobby – see captured light to take a look. i’m thinking of making these into postcards eventually. anyway, it is keeping my hands from going crazy.

sam and marelene visit the fijords
sam and marelene visit the fijords

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