Thursday, February 18, 2010

My JRA story

My Story
By: Victoria Nicholls (Vicki)

I was born to Sharon and James Hall in 1973. At about 14 months they noticed I would turn my whole body instead of my neck. Also, I would walk funny, I wasn’t moving my hips, kind of like a robot. They took me to a regular pediatrician who then referred my case to University of Michigan. Then at 18 months my diagnosis of Juvenile Rheumatoid Arthritis shocked my parents. My older sister had to have open heart surgery as an infant, now their second child was born with a systemic degenerative disease that would someday cripple her. I can now look back and put myself in their shoes. There was no treatment for JRA, just baby aspirin. The doctors told my parents I had to take 17 baby aspirin a day (at 2 years old!). Or, they had the choice of making me a pharmaceutical ginuea pig. I think they chose the right route. My parents had to exercise my legs by forcing my hips to stretch out as I laid there whimpering like a puppy taken from its’ mother. This had a great affect on them emotionally, physically and spiritually. I was not the only one affected by this disease. My immediate family was affected more than I ever knew.
At age 3 I started dance class. This was the best thing my parents could have ever done for me. I danced from age 3 to 16 Anita’s School of Dance in Sterling Heights. Thanks Anita for everything you taught me. It greatly helped my JRA and it gave me confidence and pride in myself. I would encourage any parent to enroll their child in some sort of dancing activity because of the stretching of the limbs that is required during warm up routines (upon doctor approval, of course).
During school I fought extreme discrimination. Everyone knew there was something wrong with me but I didn’t want anyone to know, so I denied having anything wrong with me. I was ashamed of my disease. The kids would whisper behind my back and say hurtful things. In first grade, I was disciplined in a school assembly because I was not sitting flat and Indian style. I could not physically sit like that. The teacher pulled me aside and I told her I have arthritis and I can’t sit like that. She called me a liar, because kids don’t get arthritis. My parents had to write her a note confirming my devious lie to not sit Indian Style was in fact true. I did have JRA. I never got an apology from the teacher. You know who you are.

I am no longer ashamed of my disease and am ready for my voice to be heard. There are hundreds of thousands of people like me. Check out Gina’s Blog she is actually the reason I started getting interested in speaking out for people with arthritis, especially the children.
At age 18, my graduation present to myself was new toes. I had all 10 toes reconstructed (5 at a time). This was the first time I could see my feet as semi-normal as opposed to the chicken claws I lived with all my childhood. My disease started progressing faster at about age 23. I started having extreme pains in my hips. I ended up with a bi-lateral hip replacement at age 27.
All through this I managed to put myself through school. I graduated from Oakland University with a major in accounting in 1997 and became a Certified Public Accountant. I was determined to have a career. My disease had other ideas. I had to go on disability in 2004 after being diagnosed with Microscopic Colitis. Then my JRA went through the roof and my body has been getting worse ever since. I had a good 2 year period on Remicade but it stopped working and I have been on the search for a medication that I haven’t tried yet and can afford.
The financial stress is unbelievable with all the hospital bills, doctor bills, blood work bills, co-pays for prescriptions. Now, Medicare part D exists ,thank God, but for people like me who need the expensive high-tech drugs they don’t pay for because of the “donut hole”. Everyone needs to contact their US Representative and Senator and say “close the donut hole in Medicare part D”.
I would go so far to say that the law is discriminatory towards the disabled. Permanently disabled people are usually on really expensive medication, that because of the donut hole, they cannot afford their medication. The “donut hole” is killing people because they can’t afford their medication. I have heard plenty of horror stories to back this up.
In 2006, I somehow started to think drinking the pain away was a good idea (even though alcoholism runs in my family tree). By February 2007 I was in the fatal stages of Alcoholism. I went into treatment and it has changed my life. I have learned self respect, humility and that I am not in control of everything. I can control one thing. I will speak out for arthritis causes every chance I can. I have found my voice, please hear me. I am not alone, there are hundreds of thousands of me’s out there. You can find your voice, too. This disease will never break my spirit. I am not my body, I am my spirit. Life is not about the wealth in your bank account, but the strength and goodness of your spirit.