New member--i need to vent

[Guest guest]

HI!! I wanted to thank everyone for the wonderful emails i've

received so far. My name is Ann and i'm from RI. I'm a 23 yr. old

who's been dealing with SLE since i was 17. I was in remission for

about 3 yrs until 2 months ago it hit me like a train wreck. )The

fevers, infection, fatigue, you know the usual.) I was trying not

to admit myself to the hospital at least till April 1, 2004. That's

when my health insurance would be effective. Since my fevers

wouldn't go away, I decided to bite the bullet and go on March 29.

Then I spent the next 12 hours in the ER until some numbskull

decided to take me to my room (i can smell the steak and cheese on

his clothes). As soon as i was in my room, i was on antibiotics.

During my 12 day stay I was on some of the strongest antibiotics

(zithromax, acyclovir, arithromycen, vancomycin). I didn't mind all

the antibiotics except that they burned up my veins. My IV's kept

infiltrating to the point where i was averaging two new IV's a day.

It got to the point where none of the nurses would dare try sticking

me. And that was only to try to get IV in...not to mention they jab

at me to draw blood. At one point I had to get a lymphnode near my

right arm pit removed to have biopsy done on it (of course it was

negative as well as all the other CT scans, MRI's, chest x rays,

spinal tap). So after the surgery, i only had one arm for everyone

to stick me with. One day, an IV nurse urged one of the many

doctors i was seeing to order a PICC line. I don't think i was ever

tortured as bad as i was until my last hospital stay. I've never

been so let down in my life. They could have spared me some torture

and pain from what i was already experiencing. I think I was more

mad that they weren't treating my Lupus, but doing every test under

the sun looking for something they couldn't find. At one point i

told the nurses and doctors that i didn't want anymore tests or

blood work or antibiotics until someone spent more than 2 minutes

explaining to me what the hell was going on... because i knew what

was wrong with me, but no one wanted to listen to what i had to

say. I wanted to see actually how much they knew, not how much they

were trying to learn (the hospital i was at was a learning hospital

which equals to alot of medical students who barely knew how to

listen to my lungs). Aside from all the learning students, at least

i got to meet actual professional rheumatologists. I met about7

different ones and they would come see me randomnly throughout the

day to ask me the same questions over and over again. I don't

understand why they just didn't tell each other my answers. O well.

But from meeting with them i actually found one i really just fell

in love with (not romantically). She actually listened and looked

me in my eyes when she talked to me, and didn't come in and give me

the run down in my test results and just walk away. she actually

waited for me to absorb the information and ask the questions. I

don't think i was in a position to comprehend everything so quickly.

The most important thing tho is that i love my rheumy!

I'm doing better now that all i do is stay up all day and night (i

can't seem to sleep) and trying to relax, make my list for the

tedious things i have to do for the day, and chase after my 2 yr old

nephew who wants to wrestle and tackle me all day. At least i'm not

being tortured at the hospital. Since i got ill, i've been out of

work for almost a month and a half...i'm actually looking forward to

work (not only because i'm broke, but because i've been restless).

Has anyone tried tai chi?? does it actually work? i need to relax.

i think i'll try it now. thanks y'all for reading my huge post and

letting me vent. : )