Newbie to the forum, but not JRA/RA.

Hello :). I've been reading your posts and decided it was time to introduce myself. I'm a 35yr old single mom to an 8yr old. As a kid I was diagnosed with Still's Disease aka Juvenile Rheumatoid Arthritis.  I was lucky in the fact that my dad was stationed in the DC area so I received top notch care.  My drs were aggressive from day one which allowed me many more years of relatively normal living.  These past 5yrs have been very very difficult. As you know, most people don't realize that JRA can affect one's organs.  Unfortunately, I am a walking example of this fact.  I have eye damage due to chronic uveitis, intersticial lung disease, a gj tube due to gi involvement, and often have bouts of pleurisy and pericarditis.  I spent the month of April inpatient on 100mg of pred to get inflammation under control.  Due to the lung/heart involvement, I take high doses of steriods which has caused Cushing's.  Lovely....
 
I've had 10 surgeries over the past 2yrs.  The most invlolved one was replacing both sides of my TMJ's.  The JRA was destroying the joint, and my body was trying to fast to heal the damage.  The bones were fusing together leaving me with an opening less than 10mm.  Surgeon was very upfront about the fact that the surgery was for function only, not for pain.  I would probably be in more pain after the surgery, but at least I would be able to talk fairly normal.  I used to be a biology teacher but I had to give that up since I can't talk clearly for an entire day.  I really really miss teaching.  I was an awesome teacher-no modesty there.
 
I am extremely lucky to have an awesome network of family and friends to help me out.  My son is obsessed with sports which is great for me.  I can sit on a sideline or a pool deck and let someone else wear him out.  I've made great friends with some of the other moms.  When I'm inpatient, they make sure he gets to practices and whereever else he needs to go.  My family also does the same.  They keep his schedule pretty much the same so he still has a sense of normalcy even when I'm not home.
 
Due to increasing complications, my local rheumy referred me down to Duke which is 3hrs away.  When it came time to replace the jaw, Duke referred me up to MCV which is also 3hrs away in the other direction.  This means quite a bit of driving to/from appointments.  JRA wise-I've been up and down the med ladder.  Now I receive infusions of Cytoxan.  This is really a med of last resort and it's being used off label.  Dr is hoping it will calm down the lung inflammation and vasculitis that I've been dealing with.  More side effects with this med than any other that I've used.  Many of them are effects that may not appear for years down the road.  I'm ok with that. My son is 8 and needs his mom now. I also get IVIG as well.

Whew...long intro. I'm glad I found this board. I also belong to the chronic pain board as well. I look forward to reading your posts and I hope to be able to support you guys as well.

Welcome Rocckyd. I'm fairly new to having r.a. and just starting on this board. I've found it to be very helpful. I'm sorry you have such a hard struggle with the disease.

My brother has had r.a. for many years, his started as an adult. But it was severe right off the start. Mine just started at the end of May (that I really noticed) and it's definitely taking some getting used to. Mine is not as severe as my brothers. Mine is sero negative. The highest dose of Prednisone I've been on is 30mg and I hated it. I'm down to 7.5mg now for 2 months until I see my physician and we'll go from there. My inflammation on my blood work has gone down so he's keeping me here to make sure it stays gone (I think).

I have 3 children but they are adult children so I'm not having to drive them to sports,etc. I did years of that :)

Again, welcome!

wow. You've had some rough time. Thats the trouble with this disease if its not under control it causes damage but often the treatment causes damage too.
Such a frustrating disease to deal with too.
My thoughts are with you. I've just had 6 weeks fighting off a bacterial infection in my lungs which was very slow to respond to antibiotics, in the end they gave me intravenous AB's as well as 50 mg prednisolone for 3 days and I'm finally over the mucous stage. I can't imagine how hard it would be dealing with it permanently.
So disabling not being able to breathe.
What is intersticial lung disease exactly?
Welcome anyway, it always feels good to rave here and have fellow sufferers support.
Chronic pain really helped me when I was very low a few years ago.
Such a good forum for pain support but we're good on the frustrations of inflammation...
Best wishes, golitho