Hello everyone. My name is Jesse and I came to this board after my fiance suggested that it might be a good idea for me to find an on-line support board about my condition. My condition is this: I was diagnosed with JRA (juvenile rheumatiod arthritis) at 18 months of age. I went into remission at about 3 years of age, but it came back with a vengence at about 8 years old. Since that time, my life has been a constant sruggle, not only with the physical aspects of this disease, but the mental and emotional aspects as well. I wish I would have found a place like this when I was still a child, so I would have been able to talk about all this with people who understood what I was going through.
My disease progressed very quickly and by the time I was nine years old, pretty much every joint in my body had been affected. Growing up is difficult for anybody, but the trials and tribulations that go along with school, friends, family, love, and life in general are very difficult when you have such an extreme physical disability. So I wanted to do anything I could to improve my physical condition. I have had many surgeries through out my life (a tendon-release type of surgery on my hips at 9 yrs old, had my appendix taken out at about 12 yrs old, had both hips replaced at 18 yrs. old, and had my elbows replaced a couple years ago).
I am now 29 years old. Although it was a struggle most of the time to even get out of bed, I managed to graduate high school, get an associates degree in music performance in college, move out on my own, and even found an amazing and beautiful woman who loves me enough to look past my severely damaged exterior the see the person I am inside (and believe me, out of all the accomplishments in my life, it is that last one that I truly beleived I possibly wouldn't acheive, we are getting married next summer
So that is all for now. I can get pretty long-winded sometimes as you all may find out with time. I just wanted to say hi and introduce myself and let everyone know that no matter how bad things may seem, that you are never alone and things can always get better.
Take care everyone and thanks for listening,
Jesse
Welcome and congratulations !!!!
Quite a inspirational story there. Thank you for sharing. You've come to a GREAT place of knowledge, caring and most of all unconditional love and understanding.
If there is ANYTHING on your mind please, please, feel free to say what you need.
Welcome again !!!!
Hi Jesse and WELCOME!!! I am fairly new to this site but I have found a lot of very useful information from some awesome people!!! KEEP UP THE GOOD WORK EVERYONE!!
Cindee
WOW It is so rare to hear of a male having such severe JRA. You're a real EFFING (excuse my french) trooper! Your story creeped me out at first, as I was also diagnosed at 18months and had my first remission at age 3. For a second I thought someone stole my story! Haha --- All joking aside, I'm amazed you've come as far as you have...I only HOPE to have that much strength, I know I'll need it in the future. Right now I'm skating by the seat of my pants with no health insurance....but eh, I'm a daredevil what can I say. I didn't have to go through a fraction of what you did growing up and I remember what a royal pain in the _ _ _ it was. I STILL want to make it to the top of one of those monkey bar dome thingies.....one day I shall....This is the first lil group I've ever joined like this. My mom was my support group growing up, she was a freaking ROCK. But now I'm older and on my own, and I sometimes find myself a little down and frustrated, and I KNOW it drives my b/f crazy..he has crohn's disease and so it's always a battle as to who hurts more. LoL Trust me, HE WINS. But we try to do a little bit for each other all day, so it kinda of evens out. I think at this point I've given up on the idea of a spotless house. With two cronicly ill people living in it, IT AINT HAPPENIN. I don't know how I get carried away some times...anyway! Just wanted to say HEY and add my lil bits in there. :) Toodles!
Katie
I just wanted to thank everyone for the quick responses. And to arriscowell (Katie), yeah, I have heard that JRA is more common and usually more severe in females. I met a woman my age with a similar history as mine and she is pretty bad off physically. My dad found an article she wrote on-line and thought about the same thing you did while reading my story, that someone stole my story! lol I get around ok and don't have a lot of pain these days, in fact, my rheumatologist suspects that i may have actually "grown out of it". But that doesn't matter because the joint damage has already been done. So I'm not really getting any worse, but no better either. I am basically just hoping that medical technology continues to improve and that I can get more surgeries (even though I absolutely HATE surgery) to repair or replace as many damaged joints as I can. That is part of the reason I have went on-line, looking for info and treatment/surgical options. I have had my hips and elbows done, and have considered getting my knees done, but what I wish for most is to have something done with my hands. I am a musician (mostly sing and play guitar, but play a few other things too), and the damage in my fingers and wrists really limits what I can play. Both wrists and a lot of my individual finger joints are actually fused together and don't move at all. I know that they can replace "some" finger joints, but it doesn't always work for people. And I don't think there is really anything they can do with wrists, except maybe break them and fuse them back together in a different position (which I have considered). But I would just like to get as much info as I can on things like that and maybe even see if I can find someone who has had similar procedures done. But it is also good to find people that understand my condition that I can talk to, or maybe even help out by giving advice of my own. And yeah, I also get a little "down and frustrated" myself, actually went through a pretty serious bout of depression in my pre-teen years, and had other bad spells on up through my high school and college years, but I also had a great support group of my own. Not only my mom, but my entire family has been amazing and with me every step of the way. Without them, I don't know if I would have made it.
And Katie, sorry to hear that your b/f has problems as well. My fiance has no real physical disabilties, but she does have a lot of mental and emotional problems, the type that require medication and therapy (Bipolar/manic depression, post traumatic stress disorder, and ADD, just to name a few). She had a very rough and abusive childhood, so I think that helps her to understand my rough childhood. Although her scars are more emotional and mental, and mine are more physical, we BOTH have scars. But I think we compliment each other well. She helps me out physically and I help her out emotionally. I was very lucky to find her.
And yeah, I would like to make it to the top of one of those "monkey bar dome thingies" too. And I won't rest til I'm sittin' up there. Comfortable and content.
Take it easy,
Jesse
Jesse - I can definitely see what your beautiful woman sees in you. You have learned so many hard life lessons at such a young age, she gets the best package, youth with the maturity life lessons bestow.
There is a man I know that is also an inspiration to me. He had JRA as a child. He has had about every joint replaced and his hands are very obviously deformed. You know what - He is one of the best damn mandolin players I have ever heard. Now get that - but he can't shake hands. Amazing.
You are amazing too Jesse. Rox
Hi Jesse and welcome to the message boards. We are a large but pretty close community here and at the other boards as well. It is like a big network of guys and girls with various stages or degrees of RA plus OA and Lupus and a mix of other goodies. We all pretty much get on here and just spill our guts to each other....and it is so therapuetic...I know you will find a lot of understanding and supportive people here. Your story is one of inspiration, you sound like a wonderful and strong person. Welcome...I hope you will feel as at home here as we all do.And Roxy, I wanted to thank you for your comments. Everything you said was very sweet. Despite my severe arthritis, I truly feel that I have been blessed in my life. And by the way, I've always wanted a mandolin, very pretty sounding instrument. How good I would be at it, I don't know. But I don't really play music to be popular, or make money, or to impress people. I do it to express myself and, most importantly, to have fun. So I don't really care if anyone thinks I'm any good or not. I must be doing something right though, because last night, I played at an open-mic, and the bar manager hired me to host the open-mic next week, even though I am already hosting on the 24th of this month. So that's cool. Another actual paying gig. Wish me luck.
And I have trouble shaking hands too. It's always got to be my right hand, and it's just like a two-fingered handshake, because my index and middle fingers on that hand are the only ones I can straighten out all the way.
Take care and thank you everyone,
Jesse
Jesse. What an inspirational story! I am in awe of you. Welcome to our board. Everyone is friendly and caring. You may be helping us out more we with you! ha ha Take care and keep posting! It's great to hear from a positive, upbeat person who has it together in his life who started SO young with this horrible disease. Your fiance has a gem in you! And visa versa I'm sure.
Susan
Haha More common in girls?!!?! Dude, when I went to the Dr when I was little, I NEVER saw a boy there. The first male I ever met that had JRA was in COLLEGE!! You are a rarity(sp??) But a kick ass one at that. :) You should be proud. Haha I think? I dunno. I'm pretty proud. For someone who's had so many surgeries and icky things, you sure do have a good outlook. I can say I was lucky enough not to have any surgery - yet.I'm new today, too - your story makes me feel ashamed for complaining about what must be nothing in comparison to what you've been, and continue to go through....
I have nothing but admiration for you
Hello my name is Pammila, I am Jesse's other half, just wanted to thank everyone for their warm support. Jesse is very blessed, with such a supportive family and friends, it has been a pleasure knowing him and being a part of his life. I think Jesse's experiences made him the nice guy he is today. Like my past experiences with mental illness made me more emotionally accepting of others problems. We have a give and take relationship complimenting each other.Thank you baby.
Thank you all for your support, especially you, NightStar. I love you most of all.
Jesse