Re: Hello... long, long, LONG intro. :)

August 25, 2004

Hi ,

Thanks for the welcome! Yeah, sometimes I feel like I must've drawn the short

straw in life, lol. My younger sister also has CP (but not RA) and is

mentally impaired... our family is one of three in the US that we know of where

there

were two singleton births that resulted in CP, as CP is not a genetic

disease. So we are a collectively unusual bad luck magnet!

I live near Atlanta and was a student at Oxford College of Emory University

from August of '98 to February of '99. I've thought off and on about contacting

the ACLU and I may still do that when I have a little more energy... I got a

" neener neener, your statute of limitations has expired and you can't sue us

now... " letter from Emory back in 2000 (I really wish I was kidding!), so I

think the lawsuit avenue is probably closed by now, but I *would* like the

illegal $5000 loan I was forced into signing without a co-signer or a witness,

for a

semester I didn't end up attending, taken off my credit record. Emory is a

pretty big fish to go after, and I'm just going to have a lot of fortitude

before I chase them down.

I very much appreciate the advice and good thoughts/prayers!

Meg

P.S. Just realized in my original mail I wrote that I was taking 15 *ccs* of

mtx... it's 15 *mg* obviously! I had ccs on the brain cause I had to have the

rheumy re-write the script... a story in and of itself...

August 25, 2004

Hi ,

Thanks for the welcome! Yeah, sometimes I feel like I must've drawn the short

straw in life, lol. My younger sister also has CP (but not RA) and is

mentally impaired... our family is one of three in the US that we know of where

there

were two singleton births that resulted in CP, as CP is not a genetic

disease. So we are a collectively unusual bad luck magnet!

I live near Atlanta and was a student at Oxford College of Emory University

from August of '98 to February of '99. I've thought off and on about contacting

the ACLU and I may still do that when I have a little more energy... I got a

" neener neener, your statute of limitations has expired and you can't sue us

now... " letter from Emory back in 2000 (I really wish I was kidding!), so I

think the lawsuit avenue is probably closed by now, but I *would* like the

illegal $5000 loan I was forced into signing without a co-signer or a witness,

for a

semester I didn't end up attending, taken off my credit record. Emory is a

pretty big fish to go after, and I'm just going to have a lot of fortitude

before I chase them down.

I very much appreciate the advice and good thoughts/prayers!

Meg

P.S. Just realized in my original mail I wrote that I was taking 15 *ccs* of

mtx... it's 15 *mg* obviously! I had ccs on the brain cause I had to have the

rheumy re-write the script... a story in and of itself...

August 25, 2004

DEAR MEG, WELCOME TO THE GROUP FIRST OF ALL, I AM SO SORRY THAT

YOU'VE HAD SUCH A PAINFUL LIFE MY GOD YOU ARE JUST A BABY, I FEEL SO

BAD FOR YOU. WHERE DO YOU LIVE? HOW LONG AGO WERE YOU IN COLLEGE?

YOU KNOW THERE IS A PLACE WERE YOU CAN GO FOR LEGAL HELP IT'S CALLED

THE ACLU, IF THAT COLLEGE IS NOT ACCOMMADATING TO DISABLE STUDENTS

THE ACLU CAN SET THEM STRAIGHT. YOU MIGHT STILL BE ABLE TO SUE THEM

YOURSELF AND NOW THAT YOUR PAIN IS NOT AS BAD, YOU COULD SPEND AN

AFTERNOON FINDING OUT ALL THEY CAN SAY IS NO AND YOU WOULD NOT LOOSE

ANYTHING AND YOU MIGHT GAIN SOME $$$ FOR YOU AND YOUR MOM. ANYWAYS

JUST THINK ABOUT IT.

I WILL KEEP THINKING ABOUT YOU AND I WILL PRAY THAT YOU CAN HAVE

BETTER DAYS AHEAD OF YOU, GOD BLESS ~ROSA~

> Hi everyone!

>

> I've only been lurking here for a day or two so I don't have much

of a feel

> for things here just yet, and I hope I'm not breaking with list

etiquette by

> posting before I've gotten my bearings - I'm just so glad to have

found a great

> support list!

>

> My name is Meg and I'm 22. I was officially diagnosed with RA on

July 29th...

> but in some ways, that's putting the end of the story before the

beginning.

> I'm looking for some advice/input about what's happened to me and

where I

> should be headed, so I hope you all don't mind quite a few details

about me.

>

> I have moderate spastic diplegic cerebral palsy and asthma. I use

a manual

> wheelchair to get around outside the house, and walk independently

inside

> (hanging onto a few things here and there). I've dealt with

chronic pain my whole

> life, have very poor circulation in my extremities and my general

stamina has

> always been less than that of my peers.

>

> When I was 14, I got a mysterious case of pneumonia that blew up

out of

> nowhere and came within about an hour of killing me - so said my

docs at the time.

> The eventual diagnosis, and it was largely one of exclusion, was

that I'd

> encountered some kind of mycoplasma. The first incident caused a

good deal of lung

> damage and my stamina took a huge hit. I remain prone to pneumonia

to this

> day, although the first four years after the initial incident were

the worst

> (about every 3 months, I would be hospitalized or nearly so). To

this day it's

> debatable whether I've ever completely gotten rid of that nasty

little bug.

>

> Not too long after the first bout with pneumonia, my feet began to

hurt

> whenever I stood for more than a minute or so. I have pins still

in my feet from a

> reconstructive foot surgery when I was 12, so I assumed it was the

fact that I

> had big metal spikes in my feet. Nothing else ever crossed my

mind...

>

> Also from that point, my fatigue was almost constant. Just going

to school

> wiped me out, and I started napping every afternoon. I was tested

for

> *everything* - anemia, mono, etc... everything but RA. Again, RA

never crossed my

> mind...

>

> I graduated and went to college at age 16 (fall of 98). The campus

was not as

> accessible as I'd been led to believe, the staff were anything but

> accommodating, the campus was nothing but hills, and I was very

quickly extremely ill

> and exhausted beyond belief. My grades started to slip, the

administration

> panicked because they thought I might sue, and... long story

short, I was forced

> out. (I'm well aware that's illegal. Almost immediately after I

had to leave

> school, my parents went through a very acrimonious divorce and we

ran out of

> money to pay lawyers. Then my mom lost her job [and therefore our

health

> insurance] and was unemployed for a year and a half... we had our

van repossessed, a

> tree fall on the house, and the house repossessed. School - and

unfortunately,

> my health - has been taking a backseat to trying to keep a roof

over our heads

> and food on the table.)

>

> During all of these lovely festivities, I noticed my stamina

plunging even

> further and my overall pain levels increasing. At first I

attributed it to

> depression (which I'm very prone to). When the winter of 2002

found me spending 15+

> hours curled up on my waterbed and crying from the pain, I started

doing some

> research and found that people with CP are prone to advanced joint

> deterioration due to the " wrong " ways we move. I assumed I'd

solved the mystery and

> resigned myself to living with the pain and, eventually, on mild

narcotics like a

> lot of my 20-something friends with CP.

>

> Meanwhile I was battling with Medicaid to try to get insurance

coverage

> again... I had already qualified due to my disability, but typical

government mind

> games were prevailing as far as my actually getting the all-

important card in

> hand, and I was getting mentally and emotionally worn out, with

all the other

> stress around.

>

> In February, I tripped and fell - not an unusual occurrence, but I

> over-corrected on the way down and landed hard on my left

shoulder. It was incredibly

> painful for about two weeks, and then seemed to be healing... and

then seemed to

> get worse again. By mid-March I was losing range of motion. I got

Medicaid

> sorted out and it took another month to find a doc who would take

Medicaid (yay

> for state budget cuts!). I finally got an appointment for June.

>

> It was about late April when the pain exploded. My feet hurt all

the time, my

> knees and hips hurt and felt " frozen, " my shoulder was killing me

(and then

> the *right* shoulder started hurting almost as bad as the left).

One night I

> took some notes on a post-it note and went to bed. When I got up

the next

> morning, my right hand was twice as big as my right. I began to

have trouble getting

> out of bed, and spent as much time as possible in my chair, even

in the

> house.

>

> The GP I went to see was nice but not altogether with it. She

decided none of

> my joints were hot, discolored or swollen, and that I had " general

arthralgia

> due to CP, " and basically told me to take some naproxen and suck

it up. She

> did, thank God, run a few blood tests. My sed rate and a few other

things came

> back slightly elevated so I was referred to rheumatology, whose

soonest

> appointment was a month and a half later.

>

> The time between appointments was a complete hell. I was taking

flat out

> *dangerous* amounts of OTC NSAIDs with no effect. I called the GP

back after a

> week and begged for something stronger. I got diclofenac, which

was equally as

> pointless. I called back again after another week and told her I

could no longer

> stand up or go to the bathroom on my own and was in excruciating

pain and

> could I please have something, anything... she told me, in

essence, " tell it to

> the rheumatologist. "

>

> In desperation I once resorted to taking a leftover percocet...

which did no

> good, either. I think that's when I *really* got scared. By the

time my

> rheumatology appointment rolled around I had vitually no use of

any part of my body.

> My mom had to lift me out of bed in the morning and pray that I'd

be okay all

> day while she was at work... I couldn't bear weight, couldn't

move my arms

> or legs, couldn't grip anything or make a fist... most of my

joints were huge

> and purple. In retropect I should have gone to the ER - I think

that's what

> you're supposed to do when the pain is so bad you're screaming at

the top of your

> lungs and you don't even realize it, lol - but I was so mentally

not-with-it,

> and mom was so stunned, I think, that we were tunnelvisioned on

the rheumy

> appointment.

>

> Fortunately my rheumatologist is *awesome*. She started me on

methotrexate,

> prednisone, folic acid, lasix and potassium (I too, have extreme

swelling and

> itchiness in my legs and feet. Is that an RA " thing, " a general

auto-immune

> " thing, " or just a general weirdness.... thing?).

>

> My bloodwork came back with a sed rate of 90 and I had a high RF

titer...

> don't remember how high now. I had a really horrible reaction to

the pill form of

> mtx - 7 full days of extreme nausea and fatigue - so after two

weeks of that,

> my rheumy switched me to the injectable form. Due to insurance

issues

> (again), I was just *finally* able to make the switch this past

Friday, with good

> results.... no problems with the injection itself, and the side

effects are much

> improved.

>

> At this point, I'm on 15ccs mtx, 12.5mg pred, 2.2mg Folgard, 40mg

lasix, and

> 20mcg potassium. My swelling and discoloration is largely gone,

and I'm back

> to gimping around my house where necessary. I've not been

prescribed

> anything for pain, but my pain is largely controlled I suppose...

although

> considering how *much* pain I was in not so long ago I guess

that's all relative. I'm

> still sore and stiff most of the time... it's hard to tell what's

RA stiffness

> and what's CP spasticity that's being aggravated due to RA

stiffness/pain.

> This is also something my rheumatologist is trying to figure

out... we're having

> a lot of trouble trying to figure out exactly what my baseline is,

because as

> I'm sure you've deduced by now, I now think the emergence of the

RA can be

> traced back at *least* as far as college, and maybe as far as my

first bout with

> pneumonia (the latter theory is underscored by the fact that my

feet don't

> hurt hardly at all anymore, for the first time in about 8 years).

>

> I have promised my doc that if my shoulder is not pain-free by my

idea, but I *need*

> my arms. The legs have never worked all that great but my arms

are not

> expendable, so I'll do whatever it takes.

>

> My latest pred taper, from 15mg to 12.5 mg this week, isn't going

so well -

> I'm having a lot more pain and stiffness and will probably have to

call my doc

> ahead of schedule to ask what she wants me to do. Is it " normal "

to have some

> trouble working down off the pred after your first major flare? I

know the

> reason my doc hasn't given me anything for pain control is because

she's trying

> to get an idea of how well the other meds are working first

(again, because of

> the CP complicating matters and because it's so hard for me to

even *remember*

> when I was last pain-free).

>

> My next visit will be on September 23, about two months from my

initial

> visit... time to ask about something specifically for pain

control? I know some of

> the fatigue is RA related and some is MTX related, but is there

anything at

> all that can be *done* about it? I've been having depression,

anxiety, panic

> attacks, insomnia and PTSD (tree falling on the house and van repo

at 3:30 am

> will do that) for a few years now and was recently referred to

mental health,

> which I still need to make an appt for... I plan to ask the rheumy

about this,

> but is there anything I should know vis-à-vis RA/RA meds and

potential

> interactions with the various meds that I might be prescribed to

get this other stuff

> under control? Does one ever get used to this " yesterday was

almost normal and

> today I've been hit by a truck " see-saw? Has anyone had any

experience or

> have any info about a possible RA/mycoplasma connection? Can

anyone tell I was

> med school bound once upon a time?

>

> Apologies for going on at such great length. Looking forward to

getting to

> know you all, and I hope everyone is either doing well or headed

in the right

> direction.

>

> Meg

>

> ----

>

> " Writers aren't exactly people... they're a whole lot of people

trying to be

> one person. " - F. Fitzgerald

>

> " I've got a silly walk, and I'd like to obtain a government grant

to help me

> develop it. " - Monty Python

>

> " There are times when you can do nothing, but you must still cry

out against

> injustice. Even the very stones will cry out if you do not... " -

Bayard Rustin

>

August 25, 2004