Re: New member Ann

[Guest guest]

I understand the need for teaching hospitals but they sometimes tend to

forget the patient. I'm so sorry you had to go through this. I am lucky with

my veins. They did so many things to them but they are still strong and I

haven't had a problem over the years. I watch some of the patients when I

take chemo and the nurses that try to get into the vein. It is painful to

watch this struggle with the veins. I can imagine how hard it must have been

for you. Even if someone doesn't mind the sticking it must get to a point

when you just hate it completely, right.

Hope you go into another long remission soon.

Mojo

New member--i need to vent

> 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. : )

>

>

>

>

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