Thursday, July 14, 2011

My Story

Diagnosis: Original Diagnosis at Childrens Hospital in Seattle, Wa. By Pediatric Rheumatologist - Age 9 – JRA

Re-Diagnosis at Arthritis Society by Dr Mallison & Petty Pediatric Rheumatologists – Age 14
(Sjogrens Syndrome, Vasculitis, Polymyositis, Raynauds Syndrome, Lupus (SLE) & Rheumatoid Arthritis)
Mixed Connective Tissue Disease

About My Diagnosis:
I have always considered myself very fortunate in my early diagnosis. I was lucky I had a mother whos best friends little sister had JRA; and realized as I walked late, at 18 mo. Old that my knees also looked like the little girls knees and my mother inquired if I too might have JRA. Unfortunately in 1978 there was not as much understanding about Rheumatic Diseases, and the pediatrician blew her off as paranoid.

As the years went by, my mother, kept close watch on my health. By age 7 she noticed the nodules & calcium deposits forming on my hands and I was always complaining about being tired and many other things as well. As my parents had divorced by then, and I was living with my father at the time; she brought this to his attention. He too blew her off as being paranoid. In a last ditch attempt, she plead her case to my stepmother, who while not her biggest fan, was a charge Orthopedics RN at Seattles Queen Anne Hill Group Health Hospital. As luck and fortune would have it, we had a family gathering the next day, and my cousins and I sat watching tv on the floor, something thats always been uncomfortable for me to do; she noticed when we were called to eat, that while everyone else leapt up quickly. I, however, had to roll over onto my right side, unfold my legs and slowly pull myself upright. In that flash of a second, she realized that I looked exactly like her senior patients in the Orthopedics ward and realized without a doubt my mother was not paranoid. She was right.

I have every test known to man done from PFT's, CT Scans, X-Rays, Blood Work, EEG, EKG's and more. The pediatric rheumatologist at Seattle's Childrens Hospital confirmed my mothers suspicions. Although she admitted upfront and right from the start, she was unqualified to diagnose me with what she was positive I had, and therefore could only give a temporary diagnosis of JRA and encourage my father to take me to Vancouver, BC to be tested by the top Pediatric Rheumatologists in the world, Dr. Mallison & Petty.

Sadly, family politics took a front seat to getting a proper diagnosis, and I struggled through medications, doctors appointments & Physical & Occupational Therapy, where every adult in the room ignored me and talked to my RN stepmother.

At 14, due to the same family politics, I returned to my mothers care, who lived in Vancouver, BC. The first thing on her to do list was to make an appointment with the Vancouver Arthritis Society. It took only moments for them to confirm exactly what the Pediatric Rheumatologist (who had done an internship with Dr Mallison & Petty) had suspected. I did not have JRA. I had (and still do have) Mixed Connective Tissue Disease – which includes: Sjogrens Syndrome, Raynauds Syndrome, Vasculitis, Polymyositis, SLE (Lupus) & Rheumatoid Arthritis.

I couldn't afford post secondary school and with all the disease & medications causing brain fog, scholarships were difficult to aim for.  I ended up doing entry level work for a number of years, tearing muscles, flaring joints and ended up making too many visits to the ER & clinics for emergency cortisone shots to the knees, oxygen masks from coming in with an oxygen sat. level of 85% and once intestinally hemmoraging.  The work caused flares, flares caused me to have to take time off work (or risk another trip to the ER), time off caused stress, stress caused a new flare...and thus the cycle continued with employers unable to understand what was going on.  I felt depressed and worthless.  And then I hit rock bottom.  I couldn't walk after my shifts - and it was my body's way of saying enough is enough.  You CANNOT do this to yourself any more.  But if you can't work, what do you do?  

I had no choice but to go onto medical leave, fighting people who were cruel for an amount that barely paid rent let alone bills.  My depression worsened as did my esteem.  Through sheer grace I found something I enjoyed and was good at and was a viable job I could do.  I'm still fighting to get it off the ground and many say its a pipe dream - but I have to be able to be able to contribute to society somehow - I need to be able to work and do SOMETHING POSITIVE to fight the feeling of uselessness, worthlessness and other negative thoughts.  I'm still fighting to become a photographer - one that focuses on primarily pets/animals & scenery - although for now I will do people to help pay the bills.  The better I do, the more I can give back and I dream of being able to eventually relocate somewhere warm that my joints will appreciate far more.  I dream of a cure, I dream of having celebrity spokespeople who have the clout to help us raise awareness, hope and fight for a cure, I dream of a future that I am doing what I love without harming my health in a place thats beautiful and supportive.  I dream a lot and when I feel at my worst - I hold on tight to those thoughts - and they keep me afloat.

What I would like people to know:

Being a child with an autoimmune disease is not the easiest thing and I think the only thing harder is being the parent of a child with an autoimmune disease. I have dealt with teachers who thought I was “lying”, “faking it”, “lazy” etc. They didn't see that as soon as I got home, most days I fell into a deep exhausted sleep. They didn't see how hard I constantly pushed myself in a strive to be “normal” - causing more harm than good and nothing but more pain and more fatigue. They didn't see the tears I cried in frustration as brain fog set in, or I fell asleep in class from exhaustion, or as I struggled to do any physical activity anyone else my age found “easy”. One would think though as you get older, that it gets easier. But it doesn't. Instead of teachers its bosses who don't understand or care about limitations or needing time off to heal. Boyfriends that weren't able to cope with dealing with someone with a chronic autoimmune disease, the hospital visits, the specialists & testing, the medications, the fatigue and more. The friends who wanted to go out and conquer the world – while I couldn't get my head off the pillow. I wasn't able to afford post-secondary school. So I started into the wonderful world of entry level dead-end jobs. It was a constant struggle maintaining a perilous and vicious cycle. Work too hard and end up injuring yourself, requiring time off. Time off equals lack of finances, which causes stress, which causes more flares & injuries. I continued to chase my tail until I literally was in tears and could not walk. I had hit rock bottom.

I wish those who don't have a autoimmune arthritis would remember that some days are fantastic and we think we can conquer the world, and other days we can barely lift our heads off the pillow. Most days, its a balance between the two with peaks and valleys. We do not wish to “leach off society” or be or feel “useless”. We do not desire deep vats of pity. We simply want to live & love life pure and simple and be loved for who we are.  I wish teachers, doctors, emergency personnel, dentists, business owners would know and learn more about this disease to make it easier for those in this next generation growing up and struggling with this disease.  Above all of that, I pray each and every day for a cure to be found at last for this ancient disease so that no other children or youth have to go through all the things I have had to.