Re: Does anyone ever feel that they are crazy? -- LIMBOLAND

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Date Posted: 10:19:59 10/04/00 Wed
Author: MelanieMarie
Subject: Re: Does anyone ever feel that they are crazy?
In reply to: Sara (Kira) 's message, "Re: Does anyone ever feel that they are crazy?" on 21:33:16 10/03/00 Tue

Sara.....

Yes, yes, yes!!! I too, am doing everything according to "the book". I am taking better care of myself now than I ever have. I don't want them to have anything to blame my sx on...except whatever is really causing them of course!

It's rediculous, isn't it? We have to be so careful how we represent ourselves in the doctors office so we aren't labeled a "nut case" or hypochondriac. I was fortunate in that I have a friend who has MS who informed me on what to expect when seeing a neuro. She advised me to not sound like I think that I may have MS because the doctor may think that I am fixating on one thing and it may affect his treatment of me. So stupid, but I did it! I truely believe that this is the only reason I haven't been given the (complete) brush-off. I feel it coming though, all it's going to take is one more negative test.

When we suffer our first truely scarey symptoms we tend to freak out a little. It's only natural, yet this behavior tends to make the doctors view us negatively...then when the clear tests start rolling in....Oh brother! We may as well start dribbling and talking to ourselves. Even my current neuro, who I think is pretty good, isn't looking me in the eye these days.

I agree with your doctor Sara, either this thing is going away on it's own or something is going to pop up that can't be ignored. I just hope that "something' doesn't put me in a wheelchair.

Take care,
MelanieMarie

> > Sometimes I feel a
> > little guilty about even seeking medical attention
> for
> > the stuff I'm going through. I feel like it isn't
> bad
> > enough.
>
> This struck a chord with me... I just wanted to say
> "exactly..."
>
> > It's hard isn't it? When I first started on my
> journey
> > to find out what was wrong with me I thought I
> > wouldn't stop until I has some answers. But we get
> > such mixed signals from the medical community. At
> > first, if you are lucky , they will order the tests.
> > But when they come back negative everything comes to
> a
> > screeching halt. No answers are answered by no
> > answers. We are literally set adrift on our own.
>
> The tests are done for now; I'm trying to get on with
> it; most of the time right now I think I'm just crazy.
> Maybe I am. Maybe we all are. But I don't buy it.
>
> If I hear that it's "stress" one more time... It's
> kind of funny. I have an exam in psychology class on
> Thursday and was reading through the textbook tonight.
> I came across a page that had a scale on it for
> rating how much stress a person is under... called the
> SRRS scale... it lists a bunch of stressful life
> events and gives them point values. I decided to take
> the test... I filled it out once for how things are
> now, once for how things were in May (during finals),
> and once for how things were in late June/ early July
> (right before I got sick). The results were funny to
> me... I got a score of 74 points for May... a score of
> 88 points for June/July... and a score of 429 points
> for right now!!!! (The scale is such that a low score
> indicates less stress and a high score indicates more
> stress). I am going to show this to the next doctor
> who even dares to suggest that my symptoms were caused
> by stress... I'm so much more stressed now that this
> has gotten in the way of my life than I was right
> before this all started! It was the beginning of
> summer vacation... the LEAST stressful time of year.
>
> I go in and they see that I'm young, I'm female, I'm
> scared, and that they can't find a reason for my
> symptoms. Four strikes against me... before I've
> barely opened my mouth.
>
> It makes me scared about what things I should and
> shouldn't call about. It makes me feel guilty for
> taking up their time with "complaints" about symptoms
> that "make no sense." I feel scared to go to the
> doctor about ANYTHING right now because the more
> things that are on my chart, the more of a
> hypochondriac I look like. Quite frankly I need to do
> the best that I can to look like a credible patient.
>
> I am doing the little things just right so that they
> can't use the cop-out things to blame this on. Not
> calling anymore between visits, no matter what, unless
> something really bad happens (lose vision, can't use a
> limb, etc), so that they can never accuse me of
> "crying wolf". Eating so well that they shouldn't be
> able to find a thing to criticize with that. Getting
> my eight hours of sleep (usually more). Keeping up on
> my homework so it can't stress me out. I got a
> different job so this can't get blamed on that.
> Taking walks every day. Spending time with my
> boyfriend and my friends. Haven't touched alcohol,
> caffeine, nicotine... not even ibuprofen... in weeks.
> Keeping myself relatively sane, not making myself a
> pest to the doctors at all.
>
> And some days are good. Sometimes the sun is out and
> it's not hot or cold and you're sitting on a chair
> looking out over the lake at the terrace and you've
> got a book and a cold drink and sitting across from
> you is someone you love and its calm and beautiful and
> you know things are good. Yeah, some part of my body
> is tingling, or my eyes blur as I read and I have to
> keep stopping to look out at the lake instead, or my
> calf muscles are moving on their own, or whatever
> weird things my body decides to do that day. But I've
> learned that your mind can still feel pretty good even
> if your body doesn't. Some seriously ill kids taught
> me that through their play.
>
> Sorry this got so long.
>
> You guys, we have to be clear on one thing if we're
> going to get through this: We're NOT crazy. My
> doctor (the one I like) said it right... he said
> "sometimes we're just not smart enough to figure it
> out, and we have to wait until it either goes away on
> its own or until the picture gets clearer and it makes
> sense."
>
> We're NOT crazy. We're just waiting.
>
> --Sara
>
>
> PS My name is "Kira" on MGH and on my other post
> here... my real name is Sara but I dunno... when I
> registered on MGH I felt weird about putting my real
> name. But I'm Sara, pleased to meet you all :)

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