Multiple Sclerosis and Me
Every since I became aware of you situation last winter when you shared on H20, you have been an inspiration to me, and I'm sure many others. I have seen some interesting results with mega-doses of Vit C and MS, which I think I shared with you, but I trust you have taken that into consideration. Some day I would like to meet you in person and give you more of a hug than this row of (((())))) provides.
Thanks everybody, I could feel all your support and hugs, and I really appreciate them :)
I'll try to reply to everybody here in one fell swoop...
Mommy...Still trying to answer your mail. I cry when I try. It was just so sweet. I promise
a real reply once I get my emotions together...
TR: Thanks for the info, I bet he takes Betaseron. I tried one of the injectable meds and
reacted so badly to it that I had to stop. Right now I'm going round with my neurologist
about what to do next...I appreciate the offer of information, thank you *hug*
Tally...dude, you have got to get another hobby besides being sick! ;) Oh believe me, I know
all about being told I needed a shrink. Tried that and didn't feel any better! I also have many
of the maladies on your list...in fact when I got diagnosed with Chronic Epstein Barr back when
I was 21 (after being sick for five years already) the doc told me they didn't know enough about
it to know where it'd go, but he did say that I should be mindful if I started showing any symptoms
of M.S. Funny, I didn't remember that until after I was diagnosed with MS last year!
CFIDS being a Watchtower disease...well I'll tell you I sure do know more JW's with it than
any other demographic. I agree with you about the dice roll of conception: My mom wasn't
supposed to have kids. I was number three, she had mumps while she was pregnant and I
was premature. Then I got very seriously ill from my childhood immunizations and my health
was pretty much shot after that. I think CFIDS, and maybe even M.S. are a domino situation...
you get stuck at the shallow end of the gene pool to begin with...add immunizations...add years
and years of sustained stress of families that would be dysfunctional even if not for the Tower...
add the Tower...and POOF! The immune system puts up the white flag and gives in, or
starts attacking you, as mine does me.
Maybe with the human genome project they'll figure out more about these things. In the mean
time all we can do is commiserate from time to time, and the rest of the time try to keep our
sense of humor. Without mine I know I would have been dead years ago!
Hope you feel better...dude, and if you find that magic bullet before I do, lemme know...
Dedalus...I'm going to hold you to that barbeque. Someday we will hang out and share stories and I'll get to play with your kids and I can be a stand in aunt for them. We have to build the families we always wanted now that we're out and our families of origin have gone all squirrley on us. I'm saving a spot for you and Foxy in my self constructed family *hug*
Had Enough: Are you sure it was me that said that stuff to you? *LOL* Must have been someone
else. I never make that much sense. But I sure appreciate you telling me that I've been encouraging
to you somehow. Sometimes I think I should just sit back for a bit and "enjoy a good shut up" as
Doctor Phil would say...but I seem to be talking and I can't shut up and as long as there's somebody
who is getting something out of it...then I guess it's okay if I keep going.
Just try not to stew too much...it's bad for your health...try to make peace as best you can
in the knowledge that you're doing your best every day to get through this situation...don't be
hard on yourself. And keep talking :) *hug* Thank you again.
LW: I wish I could take credit for the MS not having me remark...it's used with a lot of chronic
illness type thingies...and like the neurological patient I am I can't even remember where I heard it
*LOL* at least I'm still laughing about it! :)
Cornerstone, you said [quote]I post this to let you know that there are people out there with MS who know first hand your troubles and that there are caregivers who can empathise with those with MS. You know, if those selfproclaimed, "caring" "brothers" showed half as much attention to my friend as they do to their field service reports, then I would still be trying to be a "good witness" instead of slowly slipping out. It's their lack of love for one another that is proof to me that they are not from God, [quote]
You know, CS, my husband has never read the Bible or heard that quote of Jesus other than
me repeating it, but he said that he knows that the organization isn't anything he'd want to
belong to because of the way that my family and former 'friends' have totally ignored our situation.
Since I've lost the ability to drive, only once has one of my relatives asked if I needed a ride
anywhere (my sister, once, six months ago). They ignore the situation and in fact, many of
them insist that I don't have M.S. at all but am trying to get attention. My neurologist said
"I'd talk to them but I doubt they'd believe me, who am I? I'm just a doctor!"
I was sure that when I was in the hospital that the neuro would end up telling me what all
the other doctors had: That it was all in my head, and give me the name of a psychiatrist.
When he said I needed an MRI, I said to him "You mean you're not going to send me to a shrink?"
He sadly said "no, this isn't that kind of thing."
Later when I was diagnosed for certain he said to me "This is definitely not in your head, it's in your
As bad as the diagnosis was, I was glad to hear that I wasn't crazy after all these years! I was
also grateful that as bad as M.S. gets, I will live to see my child grow up. If I have to do it from
a wheelchair later on...oh well. I'm not condemning myself to that fate, some people with M.S.
never get that debilatated. But I'm not deceiving myself, either. I know that at the rate I'm going,
I may very well end up that way.
So I just try to enjoy the level of functioning that I have on any given day. Some days that means
I can't get up off the couch without help. Some days it means I can take my forearm crutch, hold
my husband's arm and go to Barnes and Noble for a little while to browse.
I can't lift my child up to hug her, but I can sit down and feel her using her whole little self to
give me a bear hug.
I am very blessed. :)
I'm sorry to hear about your friend's situation, that is true in so many congregations. People are
more concerned about counting time than really helping anyone. It's just shameful...
Your friend is lucky to have a true friend like you. Thank you for being there for him.
Tina...just love ya babe! I know I owe you e mail too, I'm working on it!
Carmel, thanks for your post. I always enjoy your posts btw. Did you use a different nick
on H2O, or did the info just fall out of one of the holes in my brain? *lol* I take quite
a bit of C...just as much as my stomach can tolerate. But if nothing else it keeps me
from catching a cold every five minutes like I used to...
I'd like to meet you one day too. :)
Did I get everybody???!!! *lol* Love ya all!