having arthritis is lonely

Tonight is a hard night to get through. I'm not feeling so well. The two joints in the fingers are swollen and pink in every finger. I can describe the pain as a rubber band being wrapped around the joint so tight that its cutting off blood flow. That pressure and pain is what im feeling. When I walk and put pressure on my right hip it gives me surge of pain that makes my leg collapse. My left foot is also sore. The bones in my foot are so sore that i cant roll the foot in any way. Other sore bones include my right shoulder and collar bone, upper spine and neck, and achy knees. This nasty jersey weather is not working anymore. I need to move to florida! Having this disease is very lonely. In the US only 300,000 kids have Juvenile Rheumatoid Arthritis. Of course I had to be a rarity. Not a lot of people know about nor do they understand it. That is one thing that makes this disease so lonely. It's not just an achy joint. It can be fevers, a rash, anemia, organ problems and so much more. The arthritis alone will make one tired but hell being anemic to knocks you off your feet. Its not so much fun here on the floor. I like to say I live for moments because sometimes this disease is all that it allows. Moments of barely no pain to explore the city for a day or moments of time to have good laughs at the movies with friends. What do I want for the new year??? ........MORE MOMENTS!

regular doctor visit

Friday, was my every 2month visit to the rheumatologist. It wasn't bad but it wasn't great. On July 10 I was 21 so that ment I was no longer able to see my pediatric doctor :(.although I like my new doctor, things were different at the pediatric hospital. I was looked at more closely where as now I almost feel like the doctors I have now are just there to write me perscriptions. Since January of 2007 I have been flaring pretty bad. I'm having difficulty find a medicine that will control my disease. The newest drug is Orencia. Its given through IV every month. I'm on my 4th month now and i'm still suffering with pain. I thought at this visit she would tell me its not working now all that is left is an injection everday. This girl does not do very well with shots! Luckily that wasn't the case but she did say that alot of people dont get the benfits from orencia til 6 months and are still getiing them a year to 2 years later! That a long time to suffer! So for now Im on prednisone the devil's drug. I refuse to go above 15mg because of the weight gain but its the one drug keeping me from being stuck in a bed all day. So I figure I have 2 months til i feel a big benefit from orencia. It's hard to live this rollercoaster of one day being ok and the next being too weak or sore but i'll do cause like I tell everyone there is no other choice.

Hello world!

My name is LJ. I'm 21 years old and I live in a world ruled by Juvenile Rheumatoid Arthritis. I hate using the saying "ruled by" but I have to admit it's the truth. Ever since I was diagnosed in 1996 I fought against the disease. I fought to be "normal". Now I don't fight so much to be normal as I do to be independent. Being independent is not easy to do with a disease like mine. For those of you that do not know about JRA it is rare and can be very destructive to the body. If the disease don't cause damage the medicine one might take, will over the years.
It has been 12 years now since this ugly disease showed its face. I have overcame deep depression, using a wheelchair for 4 years to get around, fevers higher than 102.5 degrees, 2 or 3 blood transfusions where one I had a terrible reaction to, and manage to graduate high school in the top 10% of my class. It seems like so much and it feels like nothing at all. Today, I have nothing to show for it. I have not been able to work since I was 19 years old, now leaving me to live off of Social Security. How a ill 21 year old college student with bills and credit cards lives off of $459 a month is beyond me. Some how I get through it. A blog on ssi and that bull crap will come later!
The point of this blog is to give me a place to vent but to hopefully help and meet other like me that are suffering with a disease. I would love to meet everyone and anyone! So again HI WORLD!!!