From a Lurker

December 28, 2002

Hello all,

This is only my second time ever posting. My first time was back in

June or July of this year when I was first diagnosed. I was the

28y/o from Philadelphia going through pure hell at the time because

of very itchy rashes all over my body. I have been lurking ever

since. (I posted a pic of me in Mallorca in the photos section and

forgot to put my name lol) I guess I have been in a sort of denial

for a while. I kind of felt like if I started participating in

support groups etc.. I would have to face the fact that something

really is wrong with me. I know that does not make much since or

maybe it does to some of you. I have been been on a roller coaster

of pain since June. My doctors gave me a false sense of security

back then. I was given the impression that because I was diagnosed

quickly, they would give me some medication (prednisone) and I would

be back to work in a couple of weeks. Well, that did not happen. I

started on 40mgs and within a month was up to 100mg plus a 3 day

pulse of 1000mg. Which absolutely whacked me out! I not only gained

30lbs in 6 weeks, but I had blurred vision most days, my face

physically hurt from pressure and I was losing my mind to the point I

had to be put on Zoloft! They have since added 20mgs of Methotrexate

and 50mgs of Imuran to the coctail and I am down to 15mgs of

Prednisone. The Methotrexate has started to make me vomit so I am

switching to injections next week. I go to the Veterans Hospital and

we are not allowed to do our own injections, so now I have to go in

every week for those. They are also looking into Remicade or Enbrel

(sp?). None of these meds are working. Although my labs are looking

a lot better, I am still in a lot of pain most days. Especially my

hands and feet. I had to go on Wefare back in July because I still

could not work. But I was still thinking it would only be temporary

because my doctors kept telling me to give the meds time to work.

Well, by September I was still feeling like crap and struggling to

live off of $205 a month. I decided to go ahead and apply for Social

Security. I got a call from my SS rep last month and he says it

looks like they are going to approve me. I got a letter last week

telling me to report to the SS office on Dec. 31st and to bring

someone who can handle my funds. My mother says that means they are

going to approve me but I am going to have to have a payee. I do not

need anyone to handle my money! She told me that if I tell them

that, then they might re-evaluate my case and determine that I am not

dis-abled. How do I explain to these people that I have days where I

feel like dying and then the very next day I feel like I can leap

tall buildings? This has been the most frustrating and miserable 7

months of my life. I have been in so much pain lately it's

ridiculous. I spent Christmas in bed because my feet were hurting so

bad I could hardly lay them down on the bed. I just lay there

screaming for 4 hours with my legs up in the air until I wore myself

out and went to sleep. I have a boat load of pain pills that don't

work (percocet, tylenol 3 etc..) and I have Lodine which does work,

but am not allowed to take because of some liver dysfunction I had

back in July. I was told by a pharmacist that I should not take

Lodine or any other anti-inflammatory meds while I am on Methotrexate

because it can be fatal. BUT they are are the only meds that work!

Now my doctor just told me on Thursday that I COULD take the Lodine

and she would monitor my blood. I don't know what to do anymore. I

am just tired of all of this crap. It has been good reading all of

the posts from all of you these past months. I have taken a lot of

information back to my doctors and it has helped. Thank you all for

reading my vent, and I will try to post more often.

Tee

December 29, 2002

Hi Tee,

Please feel free to vent, ask questions, or even give

advice whenever you want to. This is a support group,

and we are here for you, and it's good to know that

you are there for us.

I feel so bad for you that the " dragon " is giving you such

a difficult time of it.

It does sound like your doctor is willing to try different meds.

The Methotrexate has been their main drug of choice for

years. That may change as time goes on, and they get

in more studies and info on the newer ones such as the

Enbrel, Remicade and Kineret. Still what seems to work

wonders on one person will make another sicker. I speak

from experience on this.

Not only do many of us get a disease that can drive us

nuts, because as you said " one day you feel you could

leap tall buildings, " and the next it's unbearable pain

and misery. Trust me Tee, I know *exactly* what you

mean. Speaking from first hand experience again.

This in itself is enough to almost drive one insane!

Being approved for disability will help. Patty gave

you a good suggestion about the financial part, and

having someone along who " could " handle the money

part if that's really needed...but, it probably won't be.

Yes hon, we do get tired of this " crap " but, please don't

give up...there will still be some rainbows in your future.

Maybe not every day, but enough to keep you going.

Speaking from experience again.

Happy to hear from you, even if it is to vent. Sometimes

we feel better emotionally to write our feelings down.

There were a few positive things you mentioned. Down

to 15 mgs. of steroids, quite sure you will be approved

for SSDI (many fight that battle for a couple of years)

and maybe having someone else give you the shot,

isn't so bad.

Please keep us informed of your progress, and jump in

and say " hi " or ask questions etc. anytime you wish...

Please know Tee, that we truly do care!

((((((((((((((((((((((((((((((((((a big hug for

you)))))))))))))))))))))))))))))))))))

~~tricia~~