Results

Well last thursday I was able to start my shot of Enbrel again, and friday I started my methotrexate as well. The rheumy got my blood results back and has crossed out the possibility of the medications causing the low white blood cells! I was so happy because I really was hurting so badly that last week of no meds and didn't go back to work until yesterday. The rheumy said that he believe i MAY be developing lupus but he didn't want to say for sure yet because it's to early to tell. He mentioned something about my Sjogrens being hard to tell apart from the Lupus as far as symptoms go, so I have to get blood done every 4 weeks now instead of every 6 :( he says he will be watching me more closely now and that my white blood cells still aren't what they should be but they got a tiny bit better and he believes it may have been caused by all my infections i had the past month. He just basically didn't seem to sure about anything =/ It was frustrating waiting for him to call me to give me my results, so I smoked some weed that day because I wasn't allowed to take pills and wow did that help relieve the pain for the night and following day! It's not something I like doing unless I really have too cause it makes me feel kinda loopy lol.

My rheumy instructed me to start up pred again 2 pills every morning for five days then 1 pill every day until I see him again on august 13th which also means I need to take the omeprazole again too for now. It's helped a lot but i still feel icky taking steroids and I don't wanna get fat. He mailed me another blood paper so i gotta go 3 days before my appt to get that done again. I hope we can just figure things out so i can get on some sort of schedule and deal with what I have.

ps: im working on social security disability benefits right now, oh my gosh lots of paperwork and i'm also going to be filling for a disabled parking permit.

Test Updates & Poetry

I got my tb test taken care of, which was negative. :) & the blood test for hep is also finished. I called my rheumy today to leave a message for him like he said to do once I got those 2 tests completed so that way he could put in for the Enbrel. I just want to start it already! & for creative writing I need to write 2 poems, I have 1 already and it's about my RA. I read somewhere online that someone thought about RA as a dragon, I liked that idea so this poem describes how I feel. I can't decide if I want to make adjustments yet, but for now I guess I'll share it.








The Dragon

He comes and goes
Waiting, waiting to strike each time
Breathing fire that doesn’t burn but freezes
Contained by this creature that controls
I struggle for the strength to overcome
Trapped in pain which leads to fear
Is he gone yet?
My fingers throb, my knees ache, my feet sore
This is where he collided this time
It’s over and I’m left frozen
He left behind signs to remind me he was here
Stiffness, Swelling, Pain, Redness and Warmth
Laying in bed waiting, waiting to move again
Pill after pill, shot after shot
The dragon’s taken off, only to return again

Rheumy Appt Overview & Disney trip

My Rheumy Appt went well. I will be starting Enbrel, but there are some tests I have to take first. So i got more blood drawn yesterday to make sure I don't have Hep, and then Monday I have an appt to test for TB, after that's finished and my primary care docter faxes my rheumy the results I have to call him and let him know it's done so we can put in to get me started on Enbrel. I'm excited. He said he planned on taking me off pred but since I was in a lot of pain he decided to keep me on it a little longer until i can start Enbrel and he also gave me a prescription for a pain killer, the cool thing about them is that they are hot pink!! I posted a picture :) so i just have to take it as needed. I got copies of recent blood work & doctor notes that I am going to start asking for every time, so I'm going to get a file system going on to keep track of everything.

In other new; I got a new phone the day before yesterday! The HTC Droid Eris for verizon, I was ready for an upgrade and decided to stay with verizon. I love it! My first day of creative writing class was monday and that went well! & on tuesday I went to disneyland!!! & the good thing? I wasn't sore that day! I had so much fun!!! Here are a few pictures :) I love that I have a annual pass and can go whenever!


Yes i love love love alice in wonderland!! & was super excited that they finally have merchandise you can buy now since the moving is coming out! :) Anyways it was lots of fun and my feet didn't start hurting until the end, the weather was nice too! Good times :)

Finally saw a Rheumy, a what?

"You're how old?" ... "21" I responded to someone i knew at work. "But you're so young!" she exclaimed. "Yeah I know, but it happens." I said back.

Two months ago i was finally able to see a rheumatologist. My primary care docter had done blood tests for the RA factor and it was positive so he had diagnosed me with RA and started me on medications (around last may). Upon my first visit to the rheumatologist (It was on my 22nd birthday!) he had be get another blood tests done to make sure what we were dealing with as well as xrays. On the 12th i was finally able to see him again (my insurance takes forever to get things done) & i got my results back. It turns out to e worse then i expected. He officially diagnosed me with RA & Sjogren's Syndrome (great....) so not only do i have RA but this other thing that i now need to read up on. I got a copy of my blood results and these were the things in bold and circled.

Thyroid Peroxidase : 67 H

ANACHOICE (TM) SCREEN: Positive

ANA Pattern: Speckled

Antinuclear Antibodies: > OR = 1 : 1280

Rheumatoid Factor: 32 H

Sjogren's Anitbody (SS-A) >8.0 POS

Sjogren's Anitbody (SS-B) >8.0 POS

Cyclic Citrullinated: > 250 H

so my rheumy says i have very aggressive RA.... my medications have shifted, starting sunday i'll be taking 6 methotrexate pills instead of my normal 3... for 2 weeks then after that up it to 8 pills every sunday. I was instructed to start taking folic acid and he plans on taking me off prendisone as soon as the methotrexate gets in my system.

Part of me is happy to know for sure what i have, but again this is such depressing news that became a reality now for sure. I'd really like to find some sort of support group in my area to meet with people around my age (22) who are dealing with what i have. I'm so afraid of my future and i'll only be on my dads insurance for another year before he retires. So i'll have to find a better job that offers good insurance so now i'm stressing out. I still can't help but think why me?