Apology/etc/whiner

[Guest guest]

I sincerely apologies for responding to posts without really

introducing my PA self. I told you I am a retired RN but I really

have not told you what makes me go 'ahhhh' or 'grrrr' or 'owwww' or

even 'zooom zooom'. I apologize in advance if I'm too wordy...I tend

to do that so I'm not insulted if somebody complains.

I am always hesitant to really talk about me and my real life. Too

many people *in* my real life see me as a whiner or a slacker. They

never viewed me that way until I had to stop working. SSD (after an

eighteen month fight) was the kicker that labeled me. I want you to

know a bit of me and I do believe that someone here will understand

me. God knows, few people at home do.

first, I'm a G.R.I.T.S. If you know what that is, I need explain

little. Georgia is my home base.

I have always been a girl who hated attempts to tickle me. It hurt!

I have always been able to focus on something else get that something

else done then go on to still something else before I was " bone tired

and aching " . That kind of pain was acceptable to the people in my

life at the time. I always had horribly painful periods with

migraines and mood swings. I could do splits and other body

stretching bending show off things with no effort at all (you are so

flexible! was the praise). I remember having mumps and the measles

and chicken pox (still have a scar) and recurrent strep

infections..things children don't have to have now. I remember being

told to not pick that scab on my upper arm (small pox vaccination)

and to drink that % & *$#!!!!! stuff called medicine. We wore special

white Brownie gloves with our brown shirtwaist dresses, brown

beanies, ankle socks and brown oxfords. It always hurt to sit still

for hours in school, church and in brownie meetings (learning to be a

lady) but I dare not whine. Ladies must be stoic.

I first joined this group under another name a few years ago. I had

been told my skin problem was palmar plantar pustular psoriasis, my

pain was PA and Fibromyalgia, and my gut was 'only' IBS. The

headaches were only 'stress'. The fatigue and difficulty sleeping

were just my fault because I was not exercising enough/too

much/eating the wrong things/too much of the right things/ I was

malingering (NOT!) and that I should take more premarin since I did

not have ovaries. I was told: Take these (high) doses of NSAIDS and

this antidepressant, MTX once per week, tale that pill and sensitize

your skin for the light treatments...you'll be ok.....then NO those

liver enzymes are not important...yes your bili is triple what it

should be the other enzymes are elevated your WBCs are a bit low,

and you do seem to have a bit more bruising, but keep taking the

MTX. NOT! I was labeled 'noncompliant'.

Anyone else get the malingering or noncompliant labels thrown at you

while you were on your road toward a doc who actually would pay

attention?

Now, after years of whatever, I have a derm and a rheumy who seem to

actually care! diclofenac, Enbrel, etc... an ortho who does not want

to replace a joint with torn menisci and PA " quite yet'..braces and

injections first, he said. it's systemic, he said... and you are

only 53, he said. no lordosis in your neck? bone spurs, bulging

discs? PT and flexeril (which is useless) ONLY...We will deal with

your lower back later, he said....... grrrr. I'm will go to

another ortho doc.

I don't complain at home. At the end of 2003, right after we made

a major move, while we were still living out of boxes, my husband of

25 years, at age 47 was dx'd with stage IV rectal cancer. (I'm a

highly trained nurse with a buncha letters behind my name, right? I

can take care of EVERYTHING, right?) one month later, our pregnant 20

year old, I decided to drop out of college unemployed daughter moved

in. (I can handle anything).

My 24 year old psychiatrically disabled son lives with us now along

with my now two year old grandson and hub has liver mets. Hub gets

his Erbitux infusions each week and still teaches school although

he's had three years of grueling state of the art treatments....(yup,

I don't complain at home) His coworkers and friends all tell

me, " please take care of him, he's the greatest " .

I feel guilty when I just want to stay in bed and cry. I feel guilty

when I pursue more tx for my own body. It's expensive even with

group insurance + Medicare and hub has used up all his sick leave so

he gets docked. I feel like a whiner, but if I don't get some

relief, I will be unable to take care of everybody. Rheumy and derm

are duking it out over the Enbrel dosage...<sigh> I should NOT have

to worry about that.

That's a bit about me...only a tiny part but I'm sure I have told too

much. Thank you for reading this far. I'm into as much self care as

possible so I'm always looking and asking for sites...This link

(recommended to me by my PT) is the best I've found with easily

understandable to the layperson descriptive terms, etc...and has

helped me with general and specific information about bones, joints,

etc. disorders and treatments and has great images...use the index on

the left " information about':

http://www.eorthopod.com/eorthopodV2/index.php/ID/79791a8f7dd9f446b386

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