About

After this diagnosis my parents I were still to learn that this was not the only form of arthritis I would have.. After the scleroderma diagnosis I was still in pain, and had created my own unique way of walking that many simply call a limp and rather than walk the stairs I would scoot down them. Soon my parents learned that their 6 year old daughter had arthritis ! In 1972 I was diagnosed with Juvenile rheumatoid arthritis. At this young age I had no idea what arthritis was .... I only knew it hurt and it was doing things to me I didn’t like. Sure there was the pain and the swelling and the limited mobility that come with arthritis but it didn't stop there .......there were doctors , shots , therapy, and medications.

By the time I had reached the 3rd grade (9 years old) many of my joints began to deform. My legs and my feet hurt and my knees wouldn't straighten out . My hands were becoming painful and my fingers were definitely doing something that wasn’t right to me.....and trying to smash them straight by sitting on them didn’t work.

As early as 9 years old I had to make a decision.....let this thing I knew as arthritis get me down or simply keep going! I chose the latter of the two.

As time moved on and I was reaching adolescence I, realized I didn't like this stuff but Again I had already made the decision it wasn’t going to get me down. I tried to be a normal 12-13 year old.. I rode my bike, I went to the movies, and hung with my friends. Unfortunately running and gymnastics were not friendly to me.. At my schools field day I obviously could not participate in most of the events but I won every time we had the piggyback race and I was aboard my schoolmates back. One of my very favorite memories is the blue ribbon I-The girl with arthritis - won in the piggy back race.. I had my share of friends and lived my life the best I knew how. Unfortunately not much was stopping arthur as it is now known to me.. By age 13 my mouth would not open due to jaw involvement so WHAT ELSE COULD I DO... I fought him (arthur) . I had my jaw surgery and I felt I had conquered because now my mouth was opening again. Little did I know I would have to conquer yet again and again and again. At age 15 both feet were causing me problems and required surgery and again I conquered because now I could walk the Mall again! By the time I was 17, I required some joint replacements on both hands and yeah, once again I had to have surgery but once again I came out for the better. Arthur still didn’t win----now my hands looked and functioned better than ever. I was coming to learn that I was not disabled as some may say but I was differently-abled. Due to my arthritis I realized that I could do things, I just had to do them differently.

As I approached my 20’s my arthritis seemed to be calming down. I was in college and after receiving my degree I went to work as a travel agent. I had eased into a new lifestyle by getting a job, moving out of my parent’s home, and getting engaged. All of these things I wasn’t sure I would ever be able to do because of my arthritis. BUT ...I should have known better. I was determined that arthur would not stop me from having what I wanted. The idea of a family started to sound good but the docs said no!! Not a good idea!! Do to medications and physical problems and limitations having a child would be next to impossible.. I said “oh well” ... and two years later I gave birth to my first son. Unfortunately, after his birth things, took a turn again and my hips were in need of replacement . The decision about hip replacement was difficult considering I had a 2 year old. Arthritis wasn’t going to get me down now.. I had a toddler to take care of. The decision was made to have both hips replaced at the same time. In July of 1993 I had double hip replacement and it was a huge success. Not only could I get around better and move pain free I got rid of the ugliest built-up shoes I had ever seen. Soon my arthritis calmed down again which was a good thing because .......almost 2 years after my hip surgery I gave birth to my second miracle, another little boy.

Currently, I am single mom to the 2 best guys I know and not that they can’t keep me busy enough I also work with the Arthritis Foundation as a support group leader for children and young adults and I strive to spread the word “Kids Get Arthritis Too!”

In 1998 my local Arthritis Foundation chapter sponsored me so that I could attend the AJAO National Conference in Washington, DC. I was truly expecting to see 75 - 100 children and young adults. There were 1,400 people in attendance. I could not believe my eyes!!! The first day at the hotel I was ducking in corners and restrooms to dry my eyes. I had never seen another ME and all of a sudden I was surrounded by all these people who understood. They knew me, my aches, my pains, my fears, my frustrations but they also knew how to smile in the face of adversity and accept their lives with arthritis. For the first time in my 33 years I knew it was OK to be me.. AND I was not alone. I have since then attended and spoke at AJAO conferences and been to DC to advocate for the cause. I seen a severe need for children and young adults with JRA to be able to unite and this was the beginning of F.A.C.E.S.

In the battle of arthritis I have found several things that have helped me…..First was acceptance of my diagnosis and educating myself about arthritis. Second, I had to accept that I had to make some changes. Third , find a support system.I only wish I could have done this sooner in my travels with JRA. I have had the fortune of meeting some of the most wonderful people whom I now consider to be my closest friends! Most importantly, in my opinion, is to maintain a good, positive outlook. Those of us living with arthritis know about the medicines we should take, the exercises we should do and how often to see our doctors but we should also learn to make negatives into positives! What I do know is.........you have a choice in how you live with your arthritis. My personal opinion is that we can let arthritis control us or we can control it. Though we may not be able to control the pain or immobility, we can control how we feel about it and how we will live with it. Just as when I was 9 years old, I choose to make the most of my life. I credit my concerned and caring parents who always let me know I would be ok, a wonderful physician and The Arthritis Foundation for being my personal source for help and hope.