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

September 5, 2004

Hi ,

Thanks for the welcome.

<< But, I always admire folks like you that are so forthcoming with stuff. >>

The incredible irony in that statement is that in person I'm one of the

shyest and least revealing people on the face of the earth! A few friendships of

mine have begun online and then made the leap to " real-life " friendships, and

without fail the persons involved have ventured phrases like, " you're so quiet, "

" I feel like I'm doing all the talking, " or my personal favorite, " you're much

funnier online. " Erm... thank you? All of which are, I presume, polite ways

of saying that I'm pretty boring when I'm not behind the keyboard.

Unfortunately, that means you all get to put up with my copious ramblings. I

apologize!

<< I would ask about pain control at this next visit, it's definitely a

reasonable request at this point. >>

Well, this week is my seventh on mtx and my third on my current dosage - by

the time I actually go in I'll have another two doses under my belt. I think

what I'll probably do is just broach the subject and see how she reacts. I

brought up the idea of injectable mtx after my first (hellacious) dose of the

pills, and she raised my dose of folic acid (which did help) but otherwise

didn't

respond too favorably... after I'd taken it twice more with the same side

effects, she was more than happy to switch me to the injectable. From that whole

experience, I'm getting the idea that she's to some extent taking her cues from

*me* - which is fine, but that means that I'm going to have to stay on top of

things. In this case I think that means at least introducing the subject of

more/alternative pain control, so that *she* knows I'm open to the idea and

feel it might be necessary.... even if it ends up being weeks or months before

we

get things really sorted.

<< the ones that are completely unfamiliar with chronic pain as an issue

don't seem to be all that helpful. You probably know all that already, just

confirming in case you forget in a pain-addled state! >>

Thanks, much appreciated! I actually hadn't even considered looking into the

chosen subspecialties of the mental health folks - pain-addled indeed!

Definitely a factor and something I need to be checking in my search.

<< I have found it extremely helpful with some of the conditions you describe

- both physical and mental - to do imagery, meditation, journaling (even if

that's verbal into a tape recorder), etc - it helps with calming/centering and

some other positive benefits as well. Learning those and other techniques have

been life-savers for me. >>

Agreed on all counts. I've slacked off on my meditation lately and I can tell

the difference... hopefully now that the sheer *intensity* of the pain has

backed down some, I'll be able to center myself a little better in other

respects.

<< There are mornings I wake up and think, now, why did he hire a mack truck

and how come it only hit MY side of the bed???? >>

LOL! So true... thanks for the laugh and the well wishes.

Meg

September 5, 2004

Hi Judi,

Good to meet you! I actually had never given any thought to the long term

effects of CP until I started having pain (which of course turned out to be RA,

although I do think there's still a CP component at work that exacerbates

things). It really does make good practical sense that people with CP wear out

our

joints faster even without any additional challenges... apparently docs are

finally starting to clarify what they've said for so many years about CP being

non-progressive. Now they state that the brain damage *itself* is static, but

that the resulting physical issues (osteoarthritis type joint deterioration,

increased spasticity, reduction in stamina etc) can be, and often are,

progressive. All of that has been considered general knowledge in Japan, Canada,

the UK

and elsewhere since the 70s, but since the pharmaceutical companies here have

a chokehold on the medical industry and Eli Lilly was directly responsible

for many many cases of CP currently in existence (my own included).... it hasn't

been something the American docs have addressed. Thankfully that's

changing... in no small part due to the net, I'm sure. Personally, I'm just glad

I'm not

*crazy* - which is what I first thought a few years ago when I started having

muscle spasms the like of which I hadn't seen since about age 5!

<< Wondering how long I will be able to manage with the cane as it hurts my

elbows to bear weight on the cane, and I have to switch arms depending on which

hip hurts the worst. >>

Different " auxiliary " condition, same quandry. You're far from alone... I'm

the only person I know of with CP and RA (I'm sure there are others out there

but I haven't found anyone yet, not for lack of trying), but I have several

friends with varying degrees of CP and we are all struggling with the physical

and emotional aspects of losing mobility - for some of us it's speeded due to

autoimmune issues, some due to OA, some due to vaguely defined " aging " (at

25-30?) and some are losing that mobility due to nothing at all that the docs

can

find. The more I talk to others with CP of all degrees, all ages and from all

walks of life, the more I think that if the full truth were told, chronic pain

and loss of mobility is a package deal with CP *alone*.... never mind when

autoimmune stuff gets thrown into the mix. You've probably figured a lot of this

out on your own by now, but I just thought I'd throw in a word or two to that

end... I know for me, it's been a huge load off my mind to understand that

it's not a matter of *me* " failing " or not being strong/stoic enough, it's a

matter of *my body* changing and at times failing in ways I never expected it

to.

A small distinction, but one that was really doing my head in for a while.

<< I'm a wife (28 years this Sunday) and grandmother (daughter has a 4-year

old son and 18-month old triplets, and she is studying to be a minister.) >>

I suspect you didn't include that information idly and know very well how

much it means to me just to know that you've accomplished so much... but just

for

the record, it *does* mean a lot to me to know that you're " out there " and

have been able to build a wonderful family. A belated congratulations on your

anniversary, too!

Take care,

Meg

September 5, 2004