Sorry been out of touch for so long... been really sick

[Guest guest]

Heya guys... It has been a rough 6 months.. first with the full

blown worst flares that I've had in over 15 years started off my

summer.. I had 2 more in the fall.. RD suspected Enbrel wasn't

doing it's job so we finally got switched to Humira and within just a

few days after my first dose my blood pressure went sky high. I

think I told yall about all this. I was sick all during Christmas

and New Years. I took 2 doses of Humira and my blood pressure

continued to stay high.. as in 190/145.. Had to go to the ER 3

times ordered by my family doc for CT scans since I was having bad

headaches with it and blurry vision. Fortunately the CT scans were

always normal. Now that the humira is completely out of my system my

BP is back to my normal range which is usually around 105/70. So I'm

back on Enbrel. We are hoping that I just had a bad batch back in

the summer. Took my first shot last week so far my joints are doing

good. Im still on prednisone but I'm down to 7.5 mg per day... Will

go to 5mg next week then hopefully to 2.5 two weeks after that then

hopefully be off of it. I'm totally bummed that they took Darvocet

off the market. It always seemed to work well for mild to moderate

pain for me, with less potential for addiction than hydrocodone

which is what I'm taking now. But during my flares I was having to

take oxycodone then demerol. And 60mg of pred for a week. I went

about 3 weeks with no pred but flared again so we did 60 again and

cut it slowly. I have a hard time with prednisone... It really,

really makes me , well irritable is not even the word, more like fly

into a rage at the drop of a hate... And my anxiety went from a 1 to

100 ! My family doc put me on xanax.. it takes the edge off but I

still feel some anxiety but I'm getting better. My face is so

round.. I haven't gained any weight though. I was too sick to have

an appetite so that's sorta good in a way because I need to lose

about 50 lbs that I've gained over the past 2 years. I'm having

one of my insomnia nights again and of course pred sure doesn't help

that. I usually take ambien most of the time t works but sometimes

it doesn't work at all. Xanax doesn't make me sleepy at all

either. Just like most narcotics .. they actually keep me awake..

So that's my update in a nutshell.. Can't believe I will be 40

years old in a week. Was thinking today that more than half of my

life I have has Stlll's. Had it for 22 years this fall. Wow where

has the time gone. Seeing my orthopedic surgeon for my 2 year check

up for my last hip replacement. I think everything is going okay

with it. I'm just paranoid a bit that I'm gonna catch staph again

from someone so I tend to avoid most people and stay home alot.

I've been dating someone for a couple of months. He's a nice guy but

I've got to get over my issues with intimacy. I have a difficult

time with that cause all I can think about is germs on your skin,

ever since the infectious disease doctor told me most people are

carrying staph but those with good immune systems have no problems ,

but for us on the biologics it becomes a problem even simple hugging

if I have a cut or something, which for some reason I seem to always

have some little scratch and Im running to wash it and then put

polysporin on it. My Boyfriend doesn't really understand but I said

look 'I've had MRSA twice in my hips and it was pure hell both

times. And the scary things was I was fine one day and the next day

the area around my scar ( I was 2 months post op) began to hurt and

by that evening I had a pone the size of a tennis ball and I was in

surgery the next morning. Sometimes I wonder if I suffer from PTSD

from all these surgeries since each one always had bad complications

and sometimes the pain was excruciating post-op , especially the

last. I've been thinking about seeing a counselor to try to help me

deal with my phobia I've developed about staph and other germs and

having another surgery cause I know in a few years I will need

another revision , my first thr, the stem part has been in since 93

so that's almost 18 years and it's the not the metal type so the life

expectancy for it was 15-25 years... And for many years when I was

in remission I was very active with it and they say they wear out a

bit quicker the more impact you put them through... Well... that's

something I read years ago....so who knows that may have changed... I

don't research like I used too. I'll try to post more often now

that Im feeling a bit better. Love you guys! If anyone ever

needs me for anything for just want to ask a question feel free to

email me personally anytime for facebook me..

Jen