Hailey Grummons

[Guest guest]

Hello, my name is Hailey Grummons.

I'm 17 years old and recently I was diagnosed with stills disease.

Here's my story:

About a month ago I was completely fine, I was folding laundry and sitting on my

bed and I look down and I notice a weird strange rash on my inner thighs. I

told/showed my mom and she assumed it was just chap from the summer heat or ring

worm I had picked up from the new kittens we had just rescued. But by the end of

the day the rash had covered my legs completely. She took me to the ER that

night (Sunday) unsure what it was. They told me I was having an allergic

reaction to a medication that I took (assuming I was some kind of druggy

teenager and took something illegal) but I hadn't taken anything at all, not

even aspirin. The put me on steroids and sent me home. I was attending Summer

School to get some courses out of the way, so I went to school the next day and

felt fine, I just wore long pants to cover up the rash. Tuesday morning I still

felt fine, after school I to visit my boyfriend at his house and stayed there

until later on that night when my

lower back out of random started hurting unbearably. Wednesday I woke up and my

entire body felt broken. So I stayed home from school and rested to see if it

would help. Thursday I had to go back to school because if I missed anymore I

would be expelled and wouldn't get my credit. It was torture. I made my

boyfriend pick me up from school that day and I went to his house so I could

have someone take care of me since my mom was at work until 9. At nine my mom

called to say she was on her way to pick me up and I told her, " Okay but you're

going to have to help me walk. " And she just said, " That's it, I'm taking you

back to the ER. "

    This time I had a virus and was told to go home drink plenty of fluids and

stay in bed. So that's what I did, and so starts the fever spikes. My fever got

up to about 105 and my mom had enough, she demanded for another opinion. So she

took me to my Pediatrician and she diagnosed me with Cowasocki's, her cure again

was bed rest. Three weeks of constant fever slightly controlled by Tylenol and

Motrin, my mother was done. She took me back to the ER and ran some test and

there final solution was that I had a bladder infection and that's what was

causing all of this....?

    I went home and two nights later she took me to children's medical in

Dallas. They admitted and for an entire week I had a team of about 15 doctors

trying to figure out what was wrong with me. For once I had hope. (:

The Rheumatologist diagnosed me with stills disease. I was prescribed to take

..67 milliliters of a shot of Kineret once a day, everyday.

I've been home and taking the shots as directed for 3 weeks now. But right now

I'm in the middle of a relapse, and my hope jar feels almost empty and right now

I'm looking for the comfort and understanding that my family and friends can't

give me because they aren't or haven't gone through this been for.

[Guest guest]

Yeah, I want them to understand so badly, but when I open up to them they just

say, " hang in there, be stronger "

But I feel like I've been so strong for so long.. and I can't take it anymore.

[Guest guest]

Yeah, I totally agree with . Your mom is wrong about 'getting out

and doing'.. some days it is not possible to do much of anything, some days

are better. What's not OK is being pushed instead of supported. If you

haven't already, go to the main Stills website and order their brochures

about Stills. It's really good information, talks about pain and fatigue,

which are REAL! (duh).. I carry a few with me in my purse now and make sure

I give them to my doctors since they usually aren't familiar with all the

various Stills related issues.

You probably should be on a steroid burst which would help with the rash

and get the inflammation under control. Long term use is not recommended

because of the systems it can mess up. I have been on prednisone at

various levels for 10 years.. and had to have severe cataracts removed from

both eyes, and have heart stents put in my heart from prednisone damage..

but it's been 'worth it' because it helps with the inflammation and helps

keep SD to a lower level. I'm still on 8mg. but at one time, 3 years ago I

was on 80mg.

hang in there, Hailey, dear. It will be hard on your mom to try and

understand what you need in terms of support, but keep at it. And

definitely seek help from a rheumatologist for sure!

Take care,

Love,

*Holly *

*hollydorst@...*

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