OT: Fibromyalgia - Mari, HELP!

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Jennifer Landry

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Oct 19, 2000, 3:00:00 AM10/19/00
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Well folks, the good news is, the doc has figured out where my joint
pain, back pain, chronic fatigue, lethargy, shakiness, ect is coming
from. The bad news (and yes I know it could be a whole lot worse) is
that I have fibromyalgia. Which didn't suprise me a bit, I suspected
it for a while now. And I very carefully did NOT say the word to the
doctor, he is the one who said it first. He has put me on Vioxx for
the pain and gave me a prescription for the sleeping
pills..um....Sonata they are called. But he doesnt want me to take
them until I give the Vioxx a chance at controlling the pain and see
if that helps me sleep more than 2 hours at a stretch. He told me
that basically, controlling fibromyalgia means controlling the pain,
getting lots of sleep, and excersising, preferably in the water
(hydrotherapy). I am glad I am back in school....I have free access
to a gentle aerobics class (designed for old folks but I have been
going and I am doing ok) and a heated pool.

Mari, do you have the pain points? God. I damned near passed out
when the doc was checking mine. Especially the back, lower back and
back of my neck! He made me lie down for a minute....apparently I
turned white as a sheet and broke out in a sweat. Knees were not much
fun either. This diagnoses explains a lot, but I would like to know
more. Can you recommend some reading? Maybe web sites? Usenet? I
appreciate anything you can tell me. Especially how this might affect
the asthma, GERD, or endometriosis if you know anything there. My doc
said he would be happy to read anything I bring him to look at. He is
an internist, not a rheumatologist but he sees a lot of younger
patients with different forms of arthritis because the insurance
companies dont always like to pay for a rheumatologist for younger
adults. Plus there isnt a really good one in this area.

Jennifer
Jennifer Landry -- http://www.gis.net/~dlandry1
mailto:jdla...@mail2.gis.net
"Friends don't let friends breed"
CF+++(<--want!!) TK++ TPI++ A++

Leisa

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Oct 20, 2000, 3:00:00 AM10/20/00
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Jennifer Landry <jdla...@mail2.gis.net> wrote in message
news:s13vusgkofsd2l4su...@4ax.com...

.
>
> Mari, do you have the pain points? God. I damned near passed out
> when the doc was checking mine. Especially the back, lower back and
> back of my neck! He made me lie down for a minute....apparently I
> turned white as a sheet and broke out in a sweat. Knees were not much
> fun either. This diagnoses explains a lot, but I would like to know
> more. Can you recommend some reading? Maybe web sites? Usenet? I
> appreciate anything you can tell me. Especially how this might affect
> the asthma, GERD, or endometriosis if you know anything there. My doc
> said he would be happy to read anything I bring him to look at. He is
> an internist, not a rheumatologist but he sees a lot of younger
> patients with different forms of arthritis because the insurance
> companies dont always like to pay for a rheumatologist for younger
> adults. Plus there isnt a really good one in this area.
>

There is a fibro newsgroup, which, when it's not afire in flame wars, can
have good info. I stopped reading it last year because of all the flamewars
and trolls. If the newgroup isn't going good, they do have a pretty
informative fax.

There are two great books out by Devin Starlyn (I know I have the last name
wrong). One is blue, one is pink. The pink one is the Fibromyalgia Advocate
Handbook. The blue I can't remember the exact title but I think it is the
Fibromyalgia Handbook. Both have tons of information for dealing with the
disease.

Leisa
(fellow fibromite)

Musketaquid

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Oct 20, 2000, 3:00:00 AM10/20/00
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In article <s13vusgkofsd2l4su...@4ax.com>,
Jennifer Landry <jdla...@mail2.gis.net> wrote:

(excerpt)

> and excersising, preferably in the water
> (hydrotherapy). I am glad I am back in school....I have free access
> to a gentle aerobics class (designed for old folks but I have been
> going and I am doing ok) and a heated pool.
>

FWIW, I've heard that the exercise you describe can definitely help. A
client of mine has a relative with fibromyalgia, and said relative has
been doing the water exercises for some time now, with some lessening
of her discomfort a seeming result.

Hope this helps--good luck and keep us posted!

-Mqd

Sent via Deja.com http://www.deja.com/
Before you buy.

John & Mari Morgan

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Oct 20, 2000, 3:00:00 AM10/20/00
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On Thu, 19 Oct 2000 20:20:49 -0400, Jennifer Landry
<jdla...@mail2.gis.net> wrote:

>Well folks, the good news is, the doc has figured out where my joint
>pain, back pain, chronic fatigue, lethargy, shakiness, ect is coming
>from. The bad news (and yes I know it could be a whole lot worse) is
>that I have fibromyalgia.

Jen, I am SO sorry to hear this! *hug*

> He has put me on Vioxx for
>the pain and gave me a prescription for the sleeping
>pills..um....Sonata they are called. But he doesnt want me to take
>them until I give the Vioxx a chance at controlling the pain and see
>if that helps me sleep more than 2 hours at a stretch.

Yeah, if you can manage to sleep without sleeping pills, that's
optimal, because sleeping pills don't foster the kind of sleep you
need most (delta sleep). There's a nasty vicious circle with fibro,
though, once it gets established... lack of sleep causes more pain
which keeps you from sleeping which causes more pain. Argh! Breaking
that cycle can produce incredible results. But if you need the
sleeping pills, USE THEM! Don't be afraid to use whatever crutch you
need to get along.

If the Vioxx doesn't help matters, which isn't uncommon since there's
no inflammation going on, a lot of people have really good success
with Ultram (tramadol), especially combined with a muscle relaxant
such as Skelaxin or Flexeril.

> He told me
>that basically, controlling fibromyalgia means controlling the pain,

>getting lots of sleep, and excersising, preferably in the water
>(hydrotherapy).

Pretty much. The exercise part sucks dog but it's easy to get
deconditioned (which causes other health problems) if you hurt so much
and are so exhausted you can't move - living that one myself. Some
months I can spend an hour on the treadmill, other times getting the
hundred yards to the mailbox is an achievement. Things go up and down,
that's kind of the way it works with this. It's hard not to get
discouraged but that's really important. AFAIC, controlling the pain
by whatever means necessary is a priority, which is why I take
methadone. The milder stuff just doesn't work and I was lucky enough
to find a pain management doctor who took FMS pain seriously instead
of just shuffling me off for another Tylenol overdose. You can't
really do anything else to keep yourself healthy when you are in so
much pain. I would also say that enjoying life as much as you possibly
can is a very important part of living with FMS, too. Don't save all
your oomph for doing what _has_ to be done - use some of it doing
things you enjoy.

> I am glad I am back in school....I have free access
>to a gentle aerobics class (designed for old folks but I have been
>going and I am doing ok) and a heated pool.

Heated pools are the BEST. Chilly water makes for spasmy muscles, ouch
ouch ouch. I am envious!

>Mari, do you have the pain points?

Oh yes. *wince* There are times when I've wanted to paint red dots on
my clothes over each of the tender points so people would know not to
touch there! Doesn't it suck that so many of them are right where you
get nailed during a hug?

> Can you recommend some reading?

The Starlanyl books I mentioned in another post are pretty good. Some
people really like Miryam Williamson's books, although I didn't find
them all that useful. I think I'd just had this too long by the time I
saw them. Jacob Teitelbaum's "From Fatigued To Fantastic" is quite
interesting, but you gotta be a millionaire to follow his regime. :-(
Janny Fransen and John Russell's "Fibromyalgia Help Book" has a good
bit of useful information, especially on adapting daily tasks and
coping with brainfog, and has no navel-gazing at all.

Information on CFS/CFIDS can also be useful to you, as even if you
don't have both diagnoses (I do, as do some half of the people with
FMS) there is a lot of crossover. The two best books on that I know of
are Katrina Berne's "Running on Empty" and Verillo and Gellman's
"Chronic Fatigue Syndrome: A Treatment Guide." I use the
Verillo-Gellman book more than any other.

General chronic-illness stuff can help too. "Sick And Tired Of Being
Sick And Tired: Living with Invisible Chronic Illness" by Paul J.
Donoghue, Ph.D. and Mary Siegel, Ph.D was quite good, as is a book
called "We Are Not Alone" by Sefra Pitzele.

> Maybe web sites?

Fave websites:
http://www2.rpa.net/~lrandall/index.html - check out the pain scales!
http://chronicfatigue.about.com/health/chronicfatigue/
http://www.co-cure.org/ - also has a mailing list
http://www.spirit.net.au/~masmith/
http://www.myalgia.com/
http://www.primenet.com/~camilla/fibromyalgia.html
http://www.fmnetnews.com is Fibromyalgia Network, which has a print
newsletter for $ub$cribing to.
http://www.cfs-news.org/fibro.htm - FAQs galore
http://www.sover.net/~devstar/ - read this site before you get the
Starlanyl books, as much of the info is duplicated
http://www.pain.com/
Yahoo has a skazillion links, too.

Something for you to print out and give to the people in your life:
http://www.tidalweb.com/fms/letter.txt. My old friend Gossamer wrote
it and it never fails to make me smile and sniffle. She also has her
own related websites at http://dora.tertius.net.au/foothold/. Gossli
is an awesome (in both senses of the word) person and I miss IRCing
with her. :-( She's the sickest person I know and yet she still keeps
going - I wish I had a tenth her guts.

> Usenet?

Alt.med.fibromyalgia is the "standard." I posted my thoughts on it
elsewhere. Alt.med.fibromyalgia.recovery.info, according to its FAQ,
claims to be oriented toward treatments rather than "just life" with
the illness like AMF. It's moderated post-by-post.
Alt.med.fibromyalgia.guaifenesin is strictly for people using the
guaifenesin treatment protocol (www.sover.net/~devstar/guai.htm has
more info on this).

> Especially how this might affect
>the asthma, GERD, or endometriosis if you know anything there.

Many if not most people who have FMS have it as a part of a "cluster"
of other yucky stuff. I don't think I know any FMSer (I hate the word
"fibromite" some people use, it makes you sound like a bug!) who
doesn't have other stuff going on as well. It does complicate
treatment some since you have to juggle a bit - it always seems like
something that helps one thing aggravates another!

> My doc
>said he would be happy to read anything I bring him to look at.

What a jewel! The above sites also have a plethora of more technical
information, and one thing I _can_ say for Devin is that she does
provide a good bibliography.

> He is
>an internist, not a rheumatologist but he sees a lot of younger
>patients with different forms of arthritis because the insurance
>companies dont always like to pay for a rheumatologist for younger
>adults. Plus there isnt a really good one in this area.

You may not need a rheumatologist - in my experience, they don't know
much more about FMS than an internist willing to put some time in. If
you don't get good pain relief from medications, you may wish to
consult a pain management specialist.

I generally fly solo on Wednesday nights - DH has commitments
elsewhere that night. I don't know what your schedule is like but I'd
be happy to meet you on IRC on Wednesday evenings if you need someone
to talk to about this.

*hugs* This is such shitty news. I'm sorry to hear about anyone
getting stuck with this horrible disease!

Mari

John & Mari Morgan

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Oct 20, 2000, 3:00:00 AM10/20/00
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On Fri, 20 Oct 2000 11:43:17 GMT, "Leisa" <lei...@tejas.net> wrote:

>There is a fibro newsgroup, which, when it's not afire in flame wars, can
>have good info. I stopped reading it last year because of all the flamewars
>and trolls. If the newgroup isn't going good, they do have a pretty
>informative fax.

Lots of navel-gazing and whining, though, and if you dare not be
nicey-nice to people you are in deep shit! I was a regular a couple of
years ago and still check in from time to time to see if anything's
changed. Predictably, it hasn't. It's also an awfully grating place to
be if you're a big meanie like me and demand the caliber of posts you
see here on ASC as far as readability is concerned. The worst grammar
and spelling and rambling is excused as "brain fog" - when I'm that
fogged, I don't post! I mark things I want to reply to with this nifty
little lock icon Agent has, and reply to them when I'm feeling a
little more coherent.

>There are two great books out by Devin Starlyn (I know I have the last name
>wrong). One is blue, one is pink. The pink one is the Fibromyalgia Advocate
>Handbook. The blue I can't remember the exact title but I think it is the
>Fibromyalgia Handbook. Both have tons of information for dealing with the
>disease.

Starlanyl. The blue one is Fibromyalgia & Myofascial Pain Syndrome: A
Survival Manual. They are pretty good books, but sometimes deceptive.
Devin tends to blame the entire universe on fibro, which really pushes
my buttons as it can be very dangerous. For example, dizziness can be
a trigger point or it can be a heart problem, but she really pushes
the "blame everything on fibro" agenda. Since most FMSers have
multiple co-existing conditions, this can be a real problem. Also, she
does kind of get one-size-fits-all at times, especially on things like
the reactive hypoglycemia issue, and FMSers who _don't_ have MPS can
sometimes feel a little "on the sidelines" because so much of her
emphasis is on people with that particular disorder. FMSers vary so
much that about the only thing they all have in common is pain! She
does give good information on bodywork and the like, and some exellent
stuff on dealing with medical professionals, though. She also used to
sometimes post on alt.med.fibromyalgia, but I don't know if she still
does.

>Leisa
>(fellow fibromite)

I think more of us FMSers should be CF. Does it burn you up as much as
it does me when you see a fellow FMSer get pregnant? I just want to
shake them and tell them they're setting themselves up for a verrrrrry
long flare because of that whole lack of sleep thing. I have one
acquaintance who has CFS/FMS (a relatively mild case - she still works
almost full time, just from home) and is six months preg, and I think
she's absolutely out of her fucking tree. I don't think she's going to
be able to properly care for the kid because of her own illness, and
her husband's going to be of NO help at all.

Also, being the _third_ generation with this type of disorder
(although Mom's "just achy" and Grandma was always "just tired"), the
possibility of passing this crap, or a predisposition toward it, to
the next generation just chaps my tits something fierce. Cruel!

Mari

Leisa

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Oct 20, 2000, 3:00:00 AM10/20/00
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John & Mari Morgan <john...@gis.net> wrote in message
news:ke41vssb67u2slm79...@4ax.com...


>
> I think more of us FMSers should be CF. Does it burn you up as much as
> it does me when you see a fellow FMSer get pregnant? I just want to
> shake them and tell them they're setting themselves up for a verrrrrry
> long flare because of that whole lack of sleep thing. I have one
> acquaintance who has CFS/FMS (a relatively mild case - she still works
> almost full time, just from home) and is six months preg, and I think
> she's absolutely out of her fucking tree. I don't think she's going to
> be able to properly care for the kid because of her own illness, and
> her husband's going to be of NO help at all.
>

I can't imagine having this disease and having to look after kids. It's
tough enough taking care of myself, and at least I can decide on a bad day
whether or not I want to get up, get dressed and try to feed myself. If I
can't, Id on't have to, but if I had a kid, I'd have no choice.

> Also, being the _third_ generation with this type of disorder
> (although Mom's "just achy" and Grandma was always "just tired"), the
> possibility of passing this crap, or a predisposition toward it, to
> the next generation just chaps my tits something fierce. Cruel!
>

We were diagnosed in reverse order. I was diagnosed (but I'm mild, my
Prozac seems to put me into a remission, and my problem is more MPS at this
point.) Mom was diagnosed a couple of years later (and she's pretty bad, had
to leave her job of 25 years because she just couldn't do it physically
anymore). My Grandmother was diagnosed with polymyalgia just last week, and
her doctor advised her to have me get to my doctor and be tested, as it is
hereditary, and there is a gene they can isolate for it.

To have a child, knowing this about myself, would be the ultimate in
selfishness. Even if the child didn't get my genetic problems, s/he would
still have a mother who can't keep up with her or play with her or even meet
her basic needs, like food, shelter, and having clean clothes or a bath.

Leisa

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Oct 20, 2000, 3:00:00 AM10/20/00
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John & Mari Morgan <john...@gis.net> wrote in message
news:uu01vss0ha7192426...@4ax.com...

> On Thu, 19 Oct 2000 20:20:49 -0400, Jennifer Landry
> <jdla...@mail2.gis.net> wrote:
>
> >Mari, do you have the pain points?
>
> Oh yes. *wince* There are times when I've wanted to paint red dots on
> my clothes over each of the tender points so people would know not to
> touch there! Doesn't it suck that so many of them are right where you
> get nailed during a hug?


A well-meaning friend put me into a flare with a light rub on my bad
shoulder. I was in pain for the next six months. Other people come up to my
desk with a shoulder rub or a soft hug. It's tough wanting and needing the
contact, but not being able to handle it.
I've stopped short of putting a "look but don't touch" sign on my cubicle
wall.

> Something for you to print out and give to the people in your life:
> http://www.tidalweb.com/fms/letter.txt. My old friend Gossamer wrote
> it and it never fails to make me smile and sniffle. She also has her
> own related websites at http://dora.tertius.net.au/foothold/. Gossli
> is an awesome (in both senses of the word) person and I miss IRCing
> with her. :-( She's the sickest person I know and yet she still keeps
> going - I wish I had a tenth her guts.
>

Is the the "Letter to Normals"? It's great! When I was at my worst, I was
fighting at work for a high-backed chair (for more neck support), a monitor
stand, and an ergonomic keyboard. When I got these things, I had problems
with my chair being taken when I left for the day by people working the late
shift, and people sitting at my desk on the weekends would rearrange and
adjust all my ergonomic things, causing me to spend all day Monday in pain
while I tried to adjust things back. I also got some rude comments made
about why I thought I was so special to get my chair, etc, and when I
advised a cubicle mate that I am disabled, she said "you don't look disabled
to me".

I printed out the "Letter to Normals", put on on my cubical wall, gave
copies to my work friends and my supervisor, and handed one to every person
who had a snide comment for me. I didn't get more compassion (and I wasn't
really looking for that) but I did get left alone.

It's rough getting respect for your health with this disease. If you listen
to me and my individual ailments, I sound like a nutcase looking for
attention. But all my little things are part of the big picture of
fibromyalgia. It's been hard coming to terms with it, as so many people try
to make me feeling like I'm looking for attention. But I'm learning I don't
have to apologize or gain a co-workers approval. If I don't feel good, I
don't feel good, and that's not anyone's business but my own. It's up to me
to decide what I can and can't do on any given day, and I don't have to gage
my daily accomplishments by what the person sitting next to me has
accomplished for the day.

Leisa


Alena Ruggerio

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Oct 20, 2000, 3:00:00 AM10/20/00
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"John & Mari Morgan" <john...@gis.net> wrote in message
news:ke41vssb67u2slm79...@4ax.com...

> On Fri, 20 Oct 2000 11:43:17 GMT, "Leisa" <lei...@tejas.net> wrote:
>
> >There is a fibro newsgroup, which, when it's not afire in flame wars, can
> >have good info.

Is that the same thing as the FIBROM-L e-mail distribution list? I only
found them last week so I haven't seen any flaming, just a heavy post load.
I sent my subscription request to:

LIST...@MITVMA.MIT.EDU

Although my mom, my aunt, and my brother have had definite positive
fibromyalgia syndrome diagnoses, I have not. So I don't have personal
experience, I signed on the listserv to learn more about what the other
members of my family are going through. But I do know that my mom learned a
great deal and benefitted from the books of Mark Pellegrino.

Alena
arug...@indiana.edu

John & Mari Morgan

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Oct 21, 2000, 3:00:00 AM10/21/00
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On Fri, 20 Oct 2000 21:46:40 GMT, "Leisa" <lei...@tejas.net> wrote:

> It's tough wanting and needing the
>contact, but not being able to handle it.

Exactly, and it's something people just don't get. They often get all
huffy if you flinch, or say "please don't hug me today, I hurt." DH
has gotten skilled at reading the very subtle signs on my face to see
what my pain level is, and figuring out where I can stand to be
touched - I have so many trigger points that sometimes it's rather
difficult! :-/

> I also got some rude comments made
>about why I thought I was so special to get my chair, etc, and when I
>advised a cubicle mate that I am disabled, she said "you don't look disabled
>to me".

AAAARGH! I HATE that! WTF do they want, for us to wear a scarlet
letter or brand a big H-for-handicapped on our foreheads? People need
to learn that not all disabled people use wheelchairs (although I do
from time to time, and it screws people up to see me get out of it -
folks have this rather fixed idea that wheelchair = paralyzed) or
guide dogs or whatever. And, they need to understand that even if we
look terrific, or are happy, it doesn't mean we feel particularly good
physically. I often wish I'd break out in green spots or something
when I have a flare so people would know without my having to tell
them (and thus sound whiny). Sometimes I think that universal symbol
for the disabled - the little wheelchair icon - has done more harm
than good, although I don't know what I'd replace it with.

>It's rough getting respect for your health with this disease. If you listen
>to me and my individual ailments, I sound like a nutcase looking for
>attention. But all my little things are part of the big picture of
>fibromyalgia. It's been hard coming to terms with it, as so many people try
>to make me feeling like I'm looking for attention.

I was accused on one newsgroup of having Munchausen syndrome
(professing to be or making myself sick to get attention) and
hypochondria, when I finally responded exactly to the repetitive
question asking exactly what-all I had (instead of the usual
"fibromyalgia/chronic fatigue syndrome and some associated icky stuff"
blow-off). Yeah, it's a damn long list, because they're all separate
diagnoses, but they're all part of the same package. Even more fun are
the people who ask just how it is I can play on the computer but I
can't get a job - what they don't know is that when I'm in a
particularly bad time, the computer gets moved next to my bed or
otherwise arranged so I don't even have to get up, much less get
dressed and done-up and drive/walk to work and put in a full day and
so on. (Offline usenet reading is a thing of beauty, because I can
write a few posts here and there and then send them all out in one
batch when I download the next installment.) We're trying to scavenge
an old laptop from the Psychic Shopping Network so the desktop doesn't
need to be taken apart and moved every time I crash. IRC can be a real
sanity saver when I want some human contact but can't handle a live
visitor. I still feel like such an alien sometimes, especially since
almost all of the meatlife friends I had when I got sick gave up on me
- "you're no fun anymore" and all that - and new friends almost never
stick around very long.

> But I'm learning I don't
>have to apologize or gain a co-workers approval. If I don't feel good, I
>don't feel good, and that's not anyone's business but my own. It's up to me
>to decide what I can and can't do on any given day, and I don't have to gage
>my daily accomplishments by what the person sitting next to me has
>accomplished for the day.

That's really terrific. I'm not there yet - I still have a terrible
problem with comparing myself to normals sometimes, even after so long
(I got sick-sick in '94, after spending a few years slowly sliding
downward). DH gets quite upset with me at times because I learn and
forget, learn and forget that I'm working on a completely different
scale from other people! He wishes I'd do one or the other, learn or
forget, I think. :-)

Mari

DeForest76

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Oct 21, 2000, 3:00:00 AM10/21/00
to
Mari so eloquently wrote.....

<<WTF do they want, for us to wear a scarlet
letter or brand a big H-for-handicapped on our foreheads? People need
to learn that not all disabled people use wheelchairs (although I do
from time to time, and it screws people up to see me get out of it -
folks have this rather fixed idea that wheelchair = paralyzed) or
guide dogs or whatever. And, they need to understand that even if we
look terrific, or are happy, it doesn't mean we feel particularly good
physically. I often wish I'd break out in green spots or something
when I have a flare so people would know without my having to tell
them >>

I am usually a lurker here on this board.....single, no brats, never wanted
them and never WILL have any. I truly enjoy this board and all of you who post
here. But this thread struck me in my heart. ::::::offers up huge bowls of
the finest chocolate goodies:::::::

I, too, am "handicapped". I have Type 1 Diabetes, Lupus, Fibromyalgia, Severe
Osteo-Arthritis and Degenerative Bone & Disk Disease. Basically....I'm a total
mess in the process of falling apart. Literally. However.....I don't "LOOK"
handicapped. I look completely healthy. There are days when I can just barely
move and literally have to be pulled out of bed. My pain levels usually run
from just plain bad to excruciating. On the few good days that I have, I do
tend to overdo it. Those are the days when I get out of the house, run errands
etc. But you wouldn't believe the stares and the killer looks I get when I
park in the handicapped zones. However....I've given up trying to educate the
ignorant. Now....I no longer care what other people think. If they say
anything to me, I just continue to walk right on by without even acknowledging
their presence. These are people I do not know, do not wish to know.....and
will probably never see again in my life. I owe them NOTHING.

<<Even more fun are
the people who ask just how it is I can play on the computer but I
can't get a job>>

I can't sit very long in any one spot....but I really have to tell you that
this computer has been a God-send for me. It keeps me "connected" with people.
It allows me to have a bit of a "social" life and to meet others who share my
interests. There is absolutely no way on God's Green Earth that I would be
physically or mentally able to hold down a job. I would be dead within a
week's time. The stress and the pain would kill me.

I never wanted brats to begin with. I've known that since I was about seven
years old. However, I can't imagine being a mother to even so much as one
crumbsnatcher with all of my medical problems. It's hard enough for me to
simply take care of myself. There's no way I would be able to take care of
someone else, as well.

I'll probably go back to my lurk mode again, now. But I do so much, enjoy this
board. I may not completely agree with all of the views shared....but I
certainly respect them. You have all given me so much to think about and so
much laughter over time. And I thank you all tremendously for that :-)

:::::slips back into lurk mode:::::

De76

Leisa

unread,
Oct 21, 2000, 3:00:00 AM10/21/00
to

John & Mari Morgan <john...@gis.net> wrote in message
news:f1f3vs0sb2r7odo7v...@4ax.com...
>
> AAAARGH! I HATE that! WTF do they want, for us to wear a scarlet

> letter or brand a big H-for-handicapped on our foreheads? People need
> to learn that not all disabled people use wheelchairs (although I do
> from time to time, and it screws people up to see me get out of it -
> folks have this rather fixed idea that wheelchair = paralyzed) or
> guide dogs or whatever.

That just reminded me of something I meant to post here. A new reason for
boycotting Wal-mart: Two Wal-marts here in North Texas have refused to allow
a woman to enter the store with her Assistance Dog. The woman suffers from a
seizure disorder, and she has a chihuahua who senses her seizures and warns
her before she has one. The stores wouldn't believe that the little fellow
was a Working Dog...one even told her that he looked cute in his "little
raincoat" (his working uniform) but that didn't mean he could come inside.
While the local TV station was interviewing the woman, the dog warned her of
a seizure coming while they were on camera. Wal-mart, of course, had no
comment, other than to say that Assitance Dogs are welcome in their stores.

Leisa

IleneB

unread,
Oct 22, 2000, 3:00:00 AM10/22/00
to

Isn't it illegal to ban Working Dogs from *anywhere*?

Hey, the WMarts are famous for boobfeeding, which I personally would
find much less sanitary near me than a Chiuaua. Or, for the matter, a
Great Dane/Irish Wolfhound/St.Bernard mix.

Ilene B


In article <2224vsort7o8kcfmd...@4ax.com>, Grim
<num...@fussingquietly.com> wrote:

> Yet a woman can't bring her well-behaved assistance animal in with
> her.
>
> PIGFUCKERS.

Jennifer Landry

unread,
Oct 23, 2000, 3:00:00 AM10/23/00
to
On Fri, 20 Oct 2000 15:38:37 -0400, John & Mari Morgan
<john...@gis.net> wrote:

>On Thu, 19 Oct 2000 20:20:49 -0400, Jennifer Landry
><jdla...@mail2.gis.net> wrote:
>
>>Well folks, the good news is, the doc has figured out where my joint
>>pain, back pain, chronic fatigue, lethargy, shakiness, ect is coming
>>from. The bad news (and yes I know it could be a whole lot worse) is
>>that I have fibromyalgia.
>
>Jen, I am SO sorry to hear this! *hug*
>

Thanks you so much for all the links and info Mari. I printed out a
bunch of stuff already, mostly for my doc but also some for my Psych
class since we are studying sleep disorders at the moment :-). I also
printed out a Randall Pain Scale and filled it out, and I am going to
keep a pain diary to show my doc so we can tell for sure what is
working and what isn't. I am already a walking pharmaceutical
company, I don't want to be taking any drugs that are not doing me
some good (and so far the Vioxx does not seem to be doing shit). How
have you been? I am in a fair amount of pain at the moment, I think I
am in mid-flare (Mid term stress, maybe?). Like I said to Don, I HOPE
this is the middle of the thing, that would suggest it will get
better. I don't have TIME for it to get worse right now! :-). The
brain fog is something else. I came very close to missing class this
morning because I somehow got the idea in my head that it was Tuesday
and on Tuesday my class is later. Duh. And thank God for spell
check! I am trying to keep a positive 'tude about the whole deal,
though. I keep telling myself the same thing I tell myself about my
asthma, I have IT, IT does not have ME!! Sitting back and thinking,
Don and I figure I have had this for a long time, mildly. Then back
when I worked at the dog kennel, I caught a vicious virus that put me
bed for almost a week, and the joint pain and other things have been
worse since then (part of why I quit the kennel). And the stress of
being in school full time, much as I love it, and job searching too,
probably kicked off this latest adventure that finally drove me to the
doc. I should have told the doc about it a while ago but I figured it
was just arthritis. I do have OA along with the FMS, but now we
figure the OA is milder than I thought, and the FMS is the main cause
of pain. Which explains why the Advil wasn't doing a thing. OR the
Vioxx, for that matter. Ah well. I will give it another week, then
go back to the doc and see about a plan B. I'm a little reluctant to
take the sleeping pills from what I have read. Yeah they will knock
me out....but it probably wont be good sleep. I want to see what the
doc thinks about maybe that Ultram you mentioned, and I saw on some
sites, and maybe an SSRI.

Well this is long enough here! Let me know if you like when and where
I can find you on IRC Mari, or if you have an ICQ #. We can chat :-)

Jodi

unread,
Oct 24, 2000, 3:00:00 AM10/24/00
to
In article <s13vusgkofsd2l4su...@4ax.com>,

Jennifer Landry <jdla...@mail2.gis.net> wrote:
> Well folks, the good news is, the doc has figured out where my joint
> pain, back pain, chronic fatigue, lethargy, shakiness, ect is coming
> from. The bad news (and yes I know it could be a whole lot worse) is
> that I have fibromyalgia.

Welcome to the club.

No really. I mean that in the nicest possible way. :-)

I've come into this thread a bit late, so rather than responding to
every post in this thread (which I was tempted to do), I'll try to sum
everything up in response to the original post.

I think the most important thing to stress is that FMS/CFS is
completely different to every sufferer and what works for one person
can lay the next out flat for six months!

> Which didn't suprise me a bit, I suspected
> it for a while now. And I very carefully did NOT say the word to the

> doctor, he is the one who said it first. He has put me on Vioxx for


> the pain and gave me a prescription for the sleeping
> pills..um....Sonata they are called.

I haven't taken any serious painkillers, as my pain isn't that bad most
of the time. They tend to work for about a week and then I'm back
where I started. About a month ago the joint pain was so bad that I
could hardly move and I started taking cod liver oil capsules. I don't
believe how well it's worked. Joints are fine. Muscles and bones are
another story.

> But he doesnt want me to take
> them until I give the Vioxx a chance at controlling the pain and see

> if that helps me sleep more than 2 hours at a stretch. He told me


> that basically, controlling fibromyalgia means controlling the pain,
> getting lots of sleep, and excersising, preferably in the water
> (hydrotherapy).

I'm CFS more than FMS, so I have to be careful with exercising, though
I try to get as much as my body can handle. For me the key is getting
sleep. I'm on an SSRI and every time I think it doesn't work, I'll
forget to take it or something and discover how much worse my life
could possibly be. The pain doesn't help in getting to sleep and it is
a vicious cycle.

> Can you recommend some reading? Maybe web sites? Usenet?

My experience with Usenet (the UK group) is pretty much what others
posted here. The emphasis was on the childed and the advice they
always gave was to not overdo things and to give up work. Unless I
want to be taken to court and/or declare personal bankrupcy (which
would be more stressful and illness-inducing than dragging my carcass
to work every day), this is simply *not* an option for me.

> I
> appreciate anything you can tell me. Especially how this might affect


> the asthma, GERD, or endometriosis if you know anything there.

Can't help you there. I'm one of the lucky ones who doesn't have an
awful lot of other stuff going on. That I can remember at the moment.

Um - random stuff. The "invisible disability" thing does really suck.
I find it ironic that one of the few people who readily accepted that I
*am* disabled has spinal muscular atrophy and is almost completely
immobile. We have an in-joke along the lines of "whoops, no
wheelchair - obviously I'm not disabled!" (except it's less printable).

Of course I agree with all the "thank [insert deity of choice] that I'm
CF, especially regarding the cruelty of knowingly passing this
condition on. I mean, I wouldn't wish this on people I hate. Plus I
feel guilty enough when the bunny has to wait a couple extra hours for
me to crawl out of bed to feed her and I think it's just plain immoral
to have a kid you *know* you will not be able to physically look after.

If I ever recover, I'm not about to become a careerist workaholic. I'm
going to use my new-found energy doing all the FUN things I currently
can't!

Jodi

who didn't sleep last night and is having a less than totally
productive day at work.

Christie

unread,
Oct 24, 2000, 3:00:00 AM10/24/00
to
Yes, it certainly is. ADA makes all "reasonable accomodations" legal, and
a service animal has been proven by the courts to be a "reasonable
accomodation." All it will take is one complaint to the proper federal
agency and Wal-mart will be in a world of hurt...and they'll never make
that mistake again!

Christie in Dallas
Who has taken *way* too many employment law classes to even *touch*
ADA....

Rat & Swan

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
Leisa wrote:
>
> John & Mari Morgan <john...@gis.net> wrote in message

> > Oh yes. *wince* There are times when I've wanted to paint red dots on
> > my clothes over each of the tender points so people would know not to
> > touch there! Doesn't it suck that so many of them are right where you
> > get nailed during a hug?

> A well-meaning friend put me into a flare with a light rub on my bad
> shoulder. I was in pain for the next six months. Other people come up to my

> desk with a shoulder rub or a soft hug. It's tough wanting and needing the


> contact, but not being able to handle it.

> I've stopped short of putting a "look but don't touch" sign on my cubicle
> wall.


Oh, OWWW! After inadvertently hurting someone, myself, with a well
meant hug, I learned, pronto, that the best way to show affection was
to open my arms and let THEM choose to hug or not to! Or to ask "Would
you like a hug?" rather than just assumiong they would or were up to
one! With one person I know who has been raped and beaten up, and to
whom ALL physical contact is threatening, I either say "Verbal hug!"
without touching her, or I hold my hands out, palms upward, allowing her
to reach out and lay her hands on top of mine in an affectionate
gesture. Another gesture I use with her is to cross my hands, touching
opposite shoulders, as if hugging myself, and then extending my hands
outward, palms up, in a 'here you are' gesture. We call it 'blowing a
hug' rather than 'blowing a kiss'!

I have gotten into the habit of doing non-tactile hugs and I find that
people receive them far more readily.

Speaking of gestures, I am SOOOO proud of my little selph! In a
Squallmart the other day, we were looking for a component of Rat's
Hallowe'en costume for work. One of the people working there was
stocking shelves and I asked her for labels. She stopped and handed me a
piece of paper and a pencil, making the sign in Ameslan for 'deaf' Rat
said "Oh, well, we need to look elsewhere," and I said "No we don't!"
Carefully, I fingerspelled (I'm not all that good at it!) <<a v e r y l
a b e l s>> and she brightened and pointed out small labels to us. I
signed <<larger>> and she nodded and signed <<this way>> and walked up
over to precisely what we needed, full-page sticky labels to use in
computer printers! I signed <<thank you!>> and we both grinned at each
other!

For all their faults, Squallmart hires the disabled and that makes me
feel WONDERFUL!!

Swan

Rat & Swan

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
John & Mari Morgan wrote:

> can't get a job - what they don't know is that when I'm in a
> particularly bad time, the computer gets moved next to my bed or
> otherwise arranged so I don't even have to get up, much less get
> dressed and done-up and drive/walk to work and put in a full day and
> so on. (Offline usenet reading is a thing of beauty, because I can
> write a few posts here and there and then send them all out in one
> batch when I download the next installment.) We're trying to scavenge
> an old laptop from the Psychic Shopping Network so the desktop doesn't
> need to be taken apart and moved every time I crash.

Have you checked out the Halftheplanet website? They have links to
catalogs and pages that might have just what you need.

My suggestion would be to get what's known as an 'able-table' which is
like your standard bed-tray table, but it tilts to any position,
including upside-down and has elastic straps to hold paper or books in
place even suspended overhead!

Also, if you get a laptop, you might be interested in having a shop or a
computer mechanic (not sure what they'd be called) actually separate the
lid/screen from the body/keyboard with a long ribbon connector so that
you can suspend the screen overhead while leaving the keyboard where you
can type on it. Or check out what's available online in adaptive
computer aids. Dragon Dictate is just one speech-to-text speech
recognition program that allows you so simply speak the words and have
them appear on the wcreen as if you had typed them in. The beauty of
such a program is that it can actually ;eARN your speech patterns and
accents and it improves its correct character rate as it learns!

Go to http://halftheplanet.com and check out the ads and catalogs.
There's a wor4ld of stuff that you can get. Oh, and ASK your doctor if
he will actually prescribe such things for you! You can OFTEN get
computer aids, programs, keyboards et cetera, able tables, clamps,
lights from either the Department of Vocational Rehabilitation OR your
medical insurance company IF the item(s) is/are prescribed by your
physician! S/He will write out a scrip, just as with pills that goes
something like "RX: one ZOOM-CAPS keyboard enlarger" on his prescription
pad. You persent it to your rehab counselor or insurance provider and
they will get it for you, or you can shop and be re-imbursed.

Also, while many people think that the Department of Vocational
Rehabilitation is just for WORK, it isn't. In most, if not all, states,
the DVR has a 'homemaker' or 'daily living' track that will assist the
disabled person who does NOT wish to 'return to work' or is unable to.
They teach you how to 'work around' daily living tasks in a way that
will enable you to regain the ability to do housework or re-acquire a
social life! Also, check out Independent Living Centers, which are
usually funded by states or are privbately run. They may have solutions
to help you regain your life as it once was.

Currently, my rehabilitation goal is to re-connect with outside the home
social activities. I do not need to work outside the home, as the column
I'm writing takes care of that aspect of my life. Focusing on social
activities is perfectly acceptable as a goal according to my Rehab
counselor, and I'm going for it!

Keep your chin up (if it doesn't set off a flare, that is! Grin!) and
let me know how you are doing. I care a lot for the people on this list
and if I can help in any way, I'm delighted to do what I can!

swan

Rat & Swan

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
DeForest76 wrote:

> I am usually a lurker here on this board.....single, no brats, never wanted
> them and never WILL have any. I truly enjoy this board and all of you who post
> here. But this thread struck me in my heart. ::::::offers up huge bowls of
> the finest chocolate goodies:::::::

Welcome aboard, DeForest! I don't know how long you've lurked, but I
have a column in the Halftheplanet.com disability page. I am legally
blind, have a guide dog named Delsie and N O K I D S !!!!!

Perhaps the page will have information you can use. It's at
http://halftheplanet.com and there is a wide array of information and
areas for diabetics, fibromyalgia and other disabilities.

> etc. But you wouldn't believe the stares and the killer looks I get when I
> park in the handicapped zones. However....I've given up trying to educate the
> ignorant. Now....I no longer care what other people think. If they say
> anything to me, I just continue to walk right on by without even acknowledging
> their presence. These are people I do not know, do not wish to know.....and
> will probably never see again in my life. I owe them NOTHING.

Except for one thing: We, the disabled, are the ambassadors for the
disabled everywhere. If I am rude to someone who gives me 'lip' about my
guide dog, then the NeXT time someone who is blind happens along, that
person will think 'why should I be polite to HIM?'. Too often I have
heard people say "Well, this stupid person parked in a disabled spot and
when I commented about it they just walked right past as if they had
every right to park there!" which, fo course, only SOLIDIFIES peoples'
negative opinions!

How to get around that whithout feeling that you HaVE to deal with such
louts?? Easy! Send for bumperstickers from the Diabetes Foundation, or
other group fighting fivromyalgia, osteoarthritis, lupus, or all of the
above! Put them on your car's bumper.
THEN, when you park in a disabled space, and people eye your car,
looking for the placard or plate, they will SEE (and hopefully INFER)
that you are, indeed, a person who hAS diabetes, fibro, arthritis, lupus
or other disability! Not to mention that it has the addicitional benefit
of publicizing the cause! It's a perfect, win-win solution!

For the times when you are not in your car... wear a button! Buttons
that say "Support Fibromyalgia Research!" or some such other phrase,
will send the message that you are concerned with such things, and
probably because you have the disability, yourself, without speaking a
word! Try it and let me know if it helps any.

megasnippage

> I'll probably go back to my lurk mode again, now. But I do so much, enjoy this
> board. I may not completely agree with all of the views shared....but I
> certainly respect them. You have all given me so much to think about and so
> much laughter over time. And I thank you all tremendously for that :-)

> :::::slips back into lurk mode:::::

Here now!! Don't go away!! You are wonderfully welcomed here and I
encourage you to post and share with us! You sound like a delightful
person and I am very glad to make your acquaintance! Feel free to wander
about, there are non-alcoholic drinks as well as the usual grog, AND,
because you are disabled, there is a chocolate discount! we will return
10% of your chocolate after we inspect it! :) Please accept gentle,
cyber-hugs and a happy tail-wag from me and my guide, Delsie!

Kick your shoes off and set a spell1

Swan

Rat & Swan

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
Leisa wrote:

> That just reminded me of something I meant to post here. A new reason for
> boycotting Wal-mart: Two Wal-marts here in North Texas have refused to allow
> a woman to enter the store with her Assistance Dog. The woman suffers from a
> seizure disorder, and she has a chihuahua who senses her seizures and warns
> her before she has one. The stores wouldn't believe that the little fellow
> was a Working Dog.


This, alas, is common! Hearing Dogs, Seizure alert dogs, even monkeys
that assist mobility-impaired or paralysed persons are ROUTINELY barred
from places where guide-dogs are allowed without a murmur. It's
unfortunate, but we have a LONG way to go in educating the public. When
I was running Disability access for the 1984 World Science Fiction
Convention, my rule was that ANY anuimal trained to assist the disabled
was permitted onto the convention floor. I went head-to-head witht he
Anaheim Convention Center... and WON when a woman with cerebral palsy
and her Assistance dog were barred from entry!

It's a sorry shame that people will bar animals but wouldn't hesitate to
admit a drooling, germ-laden snotling! Yecch!

Swan

Rat & Swan

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
Marie Braden wrote:

> Kinda OT, but I saw something last night that pissed me off. We were
> at the Officers' Club, and I noticed that someone FROM MY HUSBAND'S
> SQUADRON had "tagged" the handicapped sign. How annoying.

> "Tagging" meaning they had taken a squadron logo sticker and placed it
> smack dab in the middle of the circle on the wheelchair. How annoying.

They'll get theirs, eventually.

Some in the disabled community refer to clueless non-disabled folks as
"TABs" or Temporarily Able-Bodied". It's always sobering to such folk
that they are, really, only one fifteenth of a second away from a
SERIOUS disability!

All it takes is a drive-by shooting, someone running a red light, a slip
on wet pavement, a car turning the corner to render someone who was fit
and healthy unable to continue their life as before... permanently! Int
he time it took for you to read the above, several Americans entered the
ranks of the disabled... suddenly.

This is why it is IMPERATIVE for ALL of us to get behind programs for
disabled persons... because it can happen to anyone... even Superman
(Christopher Reeves)!


Swan

Been there, done that... kept the bandages!

Rat & Swan

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
Jodi wrote:
>
> In article <s13vusgkofsd2l4su...@4ax.com>,
> Jennifer Landry <jdla...@mail2.gis.net> wrote:
> > Well folks, the good news is, the doc has figured out where my joint
> > pain, back pain, chronic fatigue, lethargy, shakiness, ect is coming
> > from. The bad news (and yes I know it could be a whole lot worse) is
> > that I have fibromyalgia.
>
> Welcome to the club.
>
> No really. I mean that in the nicest possible way. :-)
>
> I've come into this thread a bit late, so rather than responding to
> every post in this thread (which I was tempted to do), I'll try to sum
> everything up in response to the original post.

REad my responses to others on the thread for some suggestions for
handling the disabling aspects of pain.

There are prograns that enable you to dictate to the computer rather
than type words out. Also there are devices that enable one to simply
speak a command such as "lights! On! Low!" or LTemperature up!" or "Fan
on!" to start or stop home appliances such as coffemakers, lamps, the
thermostat, anything electrical! Beats "The Clapper" all hollow! Anyone
interested can either check Halftheplanet (the URL is elsewhere in this
thread) or do a websearch on the words 'adaptive' 'disabled'
'accessible' and 'daily living'. There are SCADS of things out there to
make the world accessible to everyone!

One good way to find things is to think outside the box. If you are not
paralysed, but do have joint pain resulting in difficulty moving, look
for devices that assist the paralysed to cope with daily tasks. After
all, your pain has the SAME effect of making it difficult to raise your
hand, bend over, close your fingers, move your feet et cetera! If muscle
fatigue has you too weak to type for long periods, look at the
possibility of getting a 'head pointer' device that enables you to lie
perfectly still and use only your glance or head position to operate the
computer.

While is IS important to get out and exercise as much as is
comfortable/healthy, there is also a place for REST in daily self-care.
Sometimes just ONE device, such as a button-hook or non-slip cane tip
can make a galaxy of difference in how your day goes!

Anyone who needs advice, let me know and maybe I can think of a
'work-around' for you, or go on over to Halftheplanet and see what's on
offer.

Interesting that such a large number of the childfree are also
disabled... I am *certain* that being childfree makes our lives MUCH
easier to bear!

Swan

Marie Braden

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
On Wed, 25 Oct 2000 12:49:56 -0700, Rat & Swan <lab...@pacbell.net>
wrote:

>It's a sorry shame that people will bar animals but wouldn't hesitate to
>admit a drooling, germ-laden snotling! Yecch!

One of the many beauties of Germany. Animals are allowed bloody
EVERYWHERE! Restaurants, stores, etc. A little disconcerting until I
got used to it, but I like it now that I am used to it.
---
Marie Braden
Bitburg, Germany

CF! TK+ TPI++++ A+


-----= Posted via Newsfeeds.Com, Uncensored Usenet News =-----
http://www.newsfeeds.com - The #1 Newsgroup Service in the World!
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donnab...@my-deja.com

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
Jennifer, I know there are some folks over on rec.equine who have
this. If they can ride/work with horses, they must know some secrets.
You might try a search on "fibro" in that newsgroup and see if anything
turns up. A nice, polite, brief OT post asking for responses would be
OK too (ignore Sheila Green's flames; everyone else does), especially
if you mention that you "have/want a horse" (who's to know?).

db

CatWoman

unread,
Oct 25, 2000, 3:00:00 AM10/25/00
to
lab...@pacbell.net writes:

] Also, if you get a laptop, you might be interested in having a shop or a


] computer mechanic (not sure what they'd be called) actually separate the
] lid/screen from the body/keyboard with a long ribbon connector so that
] you can suspend the screen overhead while leaving the keyboard where you
] can type on it. Or check out what's available online in adaptive

Or - what I did:

My monitor is on a swing-arm, clamped to a large
piece of furniture at the end of my bed.

My SO got a radio-controlled keyboard and mouse -
though before, I just got extra-long extension
cables, and the keyboard and mouse reach to the
top of the bed (better than the radio controlled
ones, actually - they sometimes have a range of
about 2 feet).

I can lie down, sit up, or swing the monitor out
to the side so I can set up the keyboard on a
table with a chair, if I want.

I did this when I pinched a cervical nerve in
'94.

At work, I have a keyboard that actually attaches
to the chair arms, so I can sit up straight and
keep from re-damaging the nerve.

Diana

John & Mari Morgan

unread,
Oct 26, 2000, 1:59:44 PM10/26/00
to
On Wed, 25 Oct 2000 12:25:55 -0700, Rat & Swan <lab...@pacbell.net>
wrote:

>My suggestion would be to get what's known as an 'able-table' which is


>like your standard bed-tray table, but it tilts to any position,
>including upside-down and has elastic straps to hold paper or books in
>place even suspended overhead!

I've seen these in some of those nice catalogs you and some other kind
people were able to point me to a few months ago when my hands weren't
working too well. (They're doing a little better now, hurrah!) I do
really want to keep my bedroom looking like a normal one, if that
makes any sense at all, so I do want to avoid big items like this as
long as I possibly can. Same reason as why my dream bedside table is
really a section of kitchen cabinet, with drawers and a pull-out extra
shelf (in the kitchen it'd be a cutting board), to hide all the shit
that accumulates next to the bed when you spend 16 hours a day there.
*grin*

>Also, if you get a laptop, you might be interested in having a shop or a
>computer mechanic (not sure what they'd be called) actually separate the
>lid/screen from the body/keyboard with a long ribbon connector so that
>you can suspend the screen overhead while leaving the keyboard where you
>can type on it.

Luckily, I don't have to be flat on my back in bed. Some days I'm
actually more uncomfortable that way. I make a lovely "nest" of
pillows (I have about a dozen, most of which normally reside in a pile
on the floor) for plenty of support and I can half-sit, half-recline
almost comfortably! I have a wonderful lap-desk that is essentially a
hard surface attached to a big squooshy bean-bag, and the surface has
a "rim" on one side so things don't slide off. We were able to borrow
a laptop for a day and I tried it out with happy success, using that
decorator's putty stuff (the blue stuff that feels like used gum) to
temporarily stick the laptop to the top of the lapdesk and plopping
the whole thing on my lap. It was great! I was busy! I attached pieces
of elastic to the lapdesk's top to hold my bigger books, too, but for
smaller paperbacks to stay open I have to break the bindings. Bad!
Bad! Luckily most of the time I can manage holding a paperback open,
and by the time the hands give up it's time to melt my brain with some
tv anyway. :-)

> Oh, and ASK your doctor if
>he will actually prescribe such things for you! You can OFTEN get
>computer aids, programs, keyboards et cetera, able tables, clamps,
>lights from either the Department of Vocational Rehabilitation OR your
>medical insurance company IF the item(s) is/are prescribed by your
>physician! S/He will write out a scrip, just as with pills that goes
>something like "RX: one ZOOM-CAPS keyboard enlarger" on his prescription
>pad. You persent it to your rehab counselor or insurance provider and
>they will get it for you, or you can shop and be re-imbursed.

My insurance sucks as far as this sort of thing goes - they don't pay
for anything that is "for the comfort, entertainment, or convenience
of the patient", even if prescribed by doctors or PTs/OTs. Stuff
that's not considered for comfort, entertainment, or convenience is a
VERY short list. Like since I have some mobility during good phases,
an electric scooter to use during bad flares is a "convenience." Dept
of Rehab wants absolutely squat to do with me, since I don't have the
Crip Seal of Approval from the Feds. (I was one of the ones who fell
through the cracks, thanks to one case-sabotaging doctor, a
particularly weird deadline setup because of my age and number of
credits, and the nonexistent medical care system for poor non-parents.
Three disability lawyers - who usually give free case evals - told me
not to bother with the third appeal because I had NO chance, and the
back award would have been enough to make most lawyers cream their
Brooks Brothers trousers.) Not having that "validation" makes me
ineligible for many of the programs set up for people with
disabilities.

> Also, check out Independent Living Centers, which are
>usually funded by states or are privbately run. They may have solutions
>to help you regain your life as it once was.

I contacted the local ILC and am awaiting information on how they may
be able to help. Their Center is about 60 miles away so I am slightly
pessimistic about the possibilities. (Want an irony giggle? I
contacted the library's service for the disabled. They'd be happy to
mail me the books I choose from the local library via the library's
online catalog. The funky part is, I have to mail the books back. For
any package over 1 pound, you now have to take it to the post office,
because of that Unab*mber dude. The post office is one block PAST the
library! *laugh*)

>Currently, my rehabilitation goal is to re-connect with outside the home
>social activities. I do not need to work outside the home, as the column
>I'm writing takes care of that aspect of my life. Focusing on social
>activities is perfectly acceptable as a goal according to my Rehab
>counselor, and I'm going for it!

That seems completely reasonable to me. I've found that people
frequently get awfully pissy if you have limited resources and you
dare use any of them on anything but the barest survival. If you have
8 good hours in a day, for example, you damn well better get a
full-time job, and who cares if the rest of your life goes completely
to hell. Yay for the Protestant work ethic! I am very glad your rehab
counselor has some horse sense about maintaining a well-rounded life.

I do need to find some local social options, but am not having a whole
lot of success. Driving to Boston or Portland is a killer, but the
sort of people I have most in common with (such as polyfolk and
kinkyfolk) are not well represented here. Trying to connect with the
local GLBT folks was a total failure since I'm "taking advantage of
heterosexual privilege" after doing the horrible thing of marrying a
MOTOS. *eyeroll* I did join up with the state's No Kidding! chapter
*waves at MEB* but the bulk of NK-NHites seem to be in the central
part of the state. And I usually want to drop a house on the people in
the meatlife FMS/CFS support group I go to sometimes to keep my med
staff happy, even though you'd think I'd be able to identify well with
them. (Among other things, they're almost all childed. And if you
think _I_ whine too much...)

>Keep your chin up (if it doesn't set off a flare, that is! Grin!) and
>let me know how you are doing. I care a lot for the people on this list
>and if I can help in any way, I'm delighted to do what I can!

I keep on keepin' on. Some days are good, some days are bad. Yesterday
was pretty good and I even got to go out and do a little shopping,
what fun! I'm feeling the lack of social contact most keenly lately,
especially since a group of new friends I met last spring and had
hoped I could count on a little more than others in the past didn't
pan out. (I can count on one thumb the number of friends who've stuck
by me.) The isolation's almost harder to handle than the physical
pain! Doing my best not to feel sorry for myself and most of the time
I succeed. :-) Shoulders to lean on from people like you really help,
as does a little understanding from time to time. I appreciate it.

Y'know, I'm touring the halftheplanet website and have noticed to my
distress that the "school and family" section is all about kids. Don't
those of us who are OVER 18 have family issues as well? Harrumph.

Mari

John & Mari Morgan

unread,
Oct 26, 2000, 1:59:46 PM10/26/00
to
On Wed, 25 Oct 2000 22:23:24 GMT, donnab...@my-deja.com wrote:

>Jennifer, I know there are some folks over on rec.equine who have
>this. If they can ride/work with horses, they must know some secrets.

It may not be secrets at all. Irritatingly, there is a massive range
as far as the level of "yuck" of fibro goes, rather like with MS and
many other systemic disorders, so when someone says "I have <whatever>
it's hard to know exactly what physical capabilities they have. Many
FMSers are "just a little achy" and "just a little tired," but they
can still hold down full-time jobs and busy social lives and even
athletic activities (one of the women in the meatlife FMS support
group I attend occasionally is a triathlete!). On the other end of the
spectrum are people who are quite thoroughly disabled and even
bedbound or fully wheelchair-bound. I know of one woman with FMS and
some other stuff who hasn't gone more than about six feet from her bed
in more than ten years, and has a full-time housekeeper/PCA. She ended
up having a hospital bed put in her living room so she could still
have contact with the rest of her family - her husband walked out on
her a year after she got sick, leaving their kids with her, but at
least he pays buttloads of child support and alimony, and she gets
SSDI.

OTOH, gentle riding may be excellent for keeping one's balance, which
often goes completely kaboom in fibromyalgics, and to keep muscles
strong and flexible if the exercise is well tolerated. I certainly
miss leisurely wandering around the fields and forests on horseback -
one of DH's cow-orkers has equines and has invited me to come riding
several times, but I've been "down for the count" all summer. Maybe I
should call her and make arrangements for a short trail-ride, and then
y'all can listen to me complain about the aftereffects! ;-)

Mari
horse covet-er (absolutely mad for Haflingers *grin*)

SkyEyes

unread,
Oct 26, 2000, 5:27:54 PM10/26/00
to
In article <s13vusgkofsd2l4su...@4ax.com>,

> Jennifer Landry <jdla...@mail2.gis.net> wrote:

<Snip Jen's post for brevity>

Since being diagnosed with Fibro, I've gone through a number of docs
and a number of different prescriptions for pain (Celebrex, Darvocet,
Anaprox) and for sleep (currently on Nortriptylene), and have hurt
*way* too badly to do any significant exercise beyond stretching. I
generally slept no more than 2 hours at a time, and you could cut my
Fibrofog with a knife.

The single most significant help - I've had it for a month now - is a
visco-elastic foam mattress. I was waking up every 2 hours because
whatever part of my body was in contact with the bed was sending pain
messages to my brain. With the new mattress, that doesn't happen, and
I sleep - hold onto your hats - through the night, pretty much. My
pain has decreased to the point where I actually *want* to move about
and exercise; the Fibrofog is gone; and my energy level is something
approaching normal. I actually worked an entire 40-hour week last
week. <Grin> My boss liked to died.

It's important to remember that Fibro *isn't* something wrong with your
muscles, bones and joints; it's a neurological disorder somehow linked
to sleep deprivation (whether as cause or effect is unknown). There's
a substance in the cerebro-spinal fluid, called Substance P, that has
to do with relaying pain messages to the brain. Fibromites have
something on the order of 10 times more Substance P than non-sufferers
do. Apparently, for whatever reason, our bodies send normal messages
("everything's fine, wearin' 'jammies, layin' in bed in the dark") to
our brains, but because of the high levels of Substance P, our brains
interpret the normal messages as "PAIN!!! PAIN!!! PAIN!!!"

Getting more sleep *definitely* affects pain perception - at least, it
did for me. I'm to the point now where I'm asking my doc to taper me
off the sleep and pain meds.

Anyway, I urge you to try improving your sleep environment. Wearing a
sleep mask helped me (blocked out all ambient light coming in the
windows) and sleeping with a radio or a TV on keeps me from laying
there all night listening to my ears ring. Now that I have the new
mattress, things are approximately 7000% better.

I you're interested in that visco-elastic foam, E-mail me and I'll send
you the link. (Don't want anyone to think I'm working for the place,
so I won't post it here.) I got just the chunk of foam, instead of the
full-up mattress, because frankly I couldn't afford one. Who cares,
now I sleep like a baby most nights (nights the cats don't pull the
house down around me, that is), and if it doesn't have a fancy satin
covering, who cares?

***
APOLOGY TO THE GROUP

I did not know, the only other time I posted here, that the group's
rules of de-lurking included the offering of chocolate. I should have
known, and I hereby offer my most abject apology for my complete lack
of manners (this happened "B.F.," or "Before Foam," as I now reckon my
life). To make up for my failings, I would humbly offer portions of
Knee Deep In Chocolate ice cream set prettily atop dark chocolate pound
cake and drizzled with hot fudge - and coffee, tea, or the alternative
beverage of your choice to accompany it all. Please forgive any stray
cat hairs you may encounter. . . .

Brenda "Child-free, Cat-rich" Nelson, A.A. #34
sky...@dakotacom.net

DeForest76

unread,
Oct 27, 2000, 1:43:26 AM10/27/00
to
Swan so eloquently wrote.....

<<Welcome aboard, DeForest! I don't know how long you've lurked, but I
have a column in the Halftheplanet.com disability page. I am legally
blind, have a guide dog named Delsie and N O K I D S !!!!!

Perhaps the page will have information you can use. It's at
http://halftheplanet.com and there is a wide array of information and
areas for diabetics, fibromyalgia and other disabilities.
>>


Thanks so much for the warm greeting Mari :-) I love reading this board so
much that it's the first one I come to when I first log on everyday :-) I will
definitely check out Halftheplanet. Sounds helpful :-)

Your Delsie sounds like a real sweetheart :-) I, myself, have a little brown
male Chihuahua named Pepsi. Spoiled rotten to the core.

<<Except for one thing: We, the disabled, are the ambassadors for the
disabled everywhere. If I am rude to someone who gives me 'lip' about my
guide dog, then the NeXT time someone who is blind happens along, that
person will think 'why should I be polite to HIM?'. Too often I have
heard people say "Well, this stupid person parked in a disabled spot and
when I commented about it they just walked right past as if they had
every right to park there!" which, fo course, only SOLIDIFIES peoples'
negative opinions!

How to get around that whithout feeling that you HaVE to deal with such
louts?? Easy! Send for bumperstickers from the Diabetes Foundation, or
other group fighting fivromyalgia, osteoarthritis, lupus, or all of the
above! Put them on your car's bumper.
THEN, when you park in a disabled space, and people eye your car,
looking for the placard or plate, they will SEE (and hopefully INFER)
that you are, indeed, a person who hAS diabetes, fibro, arthritis, lupus
or other disability! Not to mention that it has the addicitional benefit
of publicizing the cause! It's a perfect, win-win solution!

For the times when you are not in your car... wear a button! Buttons
that say "Support Fibromyalgia Research!" or some such other phrase,
will send the message that you are concerned with such things, and
probably because you have the disability, yourself, without speaking a
word! Try it and let me know if it helps any.
>>

I never really thought about it that way.....that we are, in fact "ambassadors"
for the disabled. However, with me being in so much pain....sometimes the pain
takes over and I just don't have the patience to deal with other people. Guess
I'm just not very good when it comes to diplomacy. It's very difficult when
you LOOK completely healthy. And so many people have never even heard about
Fibro. I've even been accused of "faking" it. Like anyone in their right mind
would love to "fake" the type of pain that I live with. But your idea of the
bumper stickers and the buttons is a great one :-) My one friend even
suggested that I print up a brief bit about Fibro and what I have to suffer
with every single day....to hand out to people who do question me on my health
status. It's just that, for the most part, I'm an extremely quiet and private
person and I find it difficult to discuss my personal health status with total
strangers who are in the process of berating me for "looking so
healthy".....yet claiming to be disabled.

<<Here now!! Don't go away!! You are wonderfully welcomed here and I
encourage you to post and share with us! You sound like a delightful
person and I am very glad to make your acquaintance! Feel free to wander
about, there are non-alcoholic drinks as well as the usual grog, AND,
because you are disabled, there is a chocolate discount! we will return
10% of your chocolate after we inspect it! :) Please accept gentle,
cyber-hugs and a happy tail-wag from me and my guide, Delsie!

Kick your shoes off and set a spell
>>

Ahhhh.....have no fear. I'm not going anywhere. LOL!!! Maybe once I get my
fill of grog, I'll regale you all with some horror stories about my 7 year old
nephew whom has earned the nickname "The Terminator". LOL!!!

::::::::::::refills the chocolate bowl::::::::::::: Hope everyone enjoys all
the chocolate goodies :-) Chocolate is one thing that helps make it worth
waking up every morning :-) Pepsi The Chihuahua gives a warm and hearty
"Woof!" and a tail wag to everyone :-)

Enjoy :-)
De76

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