Hey all:
I found this message board while getting an infusion. Glad to have found you guys. I'm a 35yr old single mom to an 8yr old boy. I've lived with chronic pain for most of my life. 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. 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 since of normalcy even when I'm not home.
I also have a wonderful pain management dr. 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. My pain dr is local and often acts as the middle man between the hospitals. In the beginning we tried injections to help with pain, but realized more was needed. I was running very high blood pressures and very tachy. I did a month long halter monitor which showed that I averaged a pulse between 130-150. Definitely due to pain. Cause of my gi issues, we are trying to keep the doses of narcotics as low as possible. Right now I take 5mg of dilauded and baclofen for the jaw muscle spasms. I've been told to expect to be on some sort of pain med for the forseeable future. The TMJ replacments involve a ton of titanium and screws in a very small space with a ton of nerves.
JRA wise-I've been up and down the med ladder. Today I received my first dose 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.
So-I'm glad I found you guys. I plan on reading posts and hopefully I'll have something to contribute. I'm incredibly lucky to have assembled a great team of drs-even if it involves driving up and down the interstate. One thing I've learned is that a good dr is hard to find, much less a whole team of them.