Yesterday, was the the BIG day. It was time I did more for the my fellow arthritis sufferers than post childish jokes and conspiracy theories (don’t worry, I will never abandon my bread and butter :). I had been moved and inspired by my new friends and hero’s (Little Wurmie (aka Joanne Wurm) and Angela Durazo who give so much to all of us but don’t expect anything in return) to continue to fight Arthur in new and better ways. It was time I ventured out of my comfort zone and try to become unlost (please check out www.theunlost.com for more info).
This past Monday, I had heard on the radio that yesterday, Feb. 8th, was Disability Awareness day at the Idaho State Capital Building. What caught my interest was that there would be a joint hearing of the House and Senate Health and Welfare Committee where members of the public could testify on any issue they wanted relating to health.
As a one time ski instructor and political operative, talking to people about a subject I care about was a main component of my job. I have never been a great public speaker but I do have enough skills to hold the attention of a audience and I’m pretty good at teaching. Why not I thought, after all I’ve never done any type of advocacy work before so why not start in front of 20 some politicians, other advocates, and members of the press. 🙂
Since I work in state government, I wanted to get permission from both my department’s HR lady and Bureau Chief. After researching rules, regs, tradition, consulting with monkeys I think, I got the all clear to testify as long as I remember not to mention where I work. Me, Alan Kristopher (yes that is the correct spelling of my middle name-what can I say but talk to my parents 🙂 Brewington was going to go take on the Idaho Legislature in the hopes of educating them about the bastard we know as Arthur!!!
For those weird people out that don’t closely follow Idaho politics, Idaho’s mental health system has recently experienced a $45 million cut. The solution for this cut, according to some in the legislature, was to bolster the mental health programs in Idaho’s prisons. This was the type of brilliant public policy I was going up against (for those that don’t know me, that was sarcasm!)
Enough ranting, back to my experience. Anyone that wanted to testify before the joint committee was supposed to check in at 7am and testimony would start at 8am. Security was late opening the door for us so all of us advocates where stuck out front of the auditorium just passing time by making chit chat. One advocate for the mental health told me if he got the $45 million back he would try to give half to arthritis research! That type of generosity was shocking to me since I had just meet the guy, HATS OFF TO ANYONE and EVERYONE that works in that field!!!! GOOD LUCK too!!!!
In order to ensure everyone got to testify in an orderly matter we had to sign in and turn in a copy of our testimony. That way if we were not as articulate as we had hope, at least a polished version of our testimony would be on the congressional record. Once all committee members were present the Senate committee chairman picked 6 names to come sit up front and testify. I was in the 3rd group of 6 to testify.
I didn’t start to get nervous about speaking until the first 6 where done and my name wasn’t called for the 2nd group. I don’t like knowing, some might say I’m a control freak, I like to think I just want to know everything and everything 🙂 As anyone that knows me knows I sweat a lot under normal circumstances, now imagine what I’m like waiting to get in front of a congressional committee to speak—I should have brought an extra shirt to return to work in 🙂
Thankfully my name was called in the 3rd group of 6. I would be following a girl who had a genetic disorder that usually kills before the age of 1. She was 21, has had more broken bones than her age, and surgeries too. The only doctor that knows anything about this condition lives in New York so she had to travel back and forth a lot. Unfortunately, I was to nervous to remember her name or condition and for that I’m sorry.
It was my moment for which I had 3 minutes to convince everyone to give arthritis more attention, respect, and understanding. I didn’t realize how short 3 minutes was until yesterday! First, I wanted them to realize hard it is for all of us to re-learn how to live. People need to learn that a simple thing like tying our shoes can be very painful and difficult. Second, I wanted the committee to learn that arthritis effects everyone, not just old timers. Finally, I wanted to point out that we don’t want a handout, we just need help making our lives a little easier.
If I had to grade my testimony I would say I earned a B-. The committee members seemed interested in what I had to say (except for one fat old guy in the back who was asleep-he did look like a member of Honey BooBoo’s family so I guess I shouldn’t expect much!) but I got tongue tied a little which cost me some time. I had hoped to leave them with examples of simple public policy solutions like how helpful it would be if arthritis would be considered a disability so things like getting parking permits and food stamps were easier! At the very least, I want them to know that arthritis effects all of us, not just grandma and grandpa!!!
There is one thing I learned from this experience, I want to do that again! I want to earn a A, not a B-. You hear that world, it is time you heard more from me! Its time I learned how to use my skills for the benefit of all of us, not just for my own enterntainment 🙂 With some luck, I hope I find more opportunities to sound off! Any non-profits or research facilities need a spokesman, please let me know! I want to talk, I’m tired of hurting, and I know I can help!!!!
P.S. If your interested, this is the testimony I gave to the committee to go on the congressional record. Let me know what you think!!!
Joint House and Senate Health and Welfare Committee
Hello, my name is Alan Brewington and I’m a 30 something joint arthritis and chronic pain sufferer. Hopefully some of you are saying that is impossible, this guy is not an old timer or grandpa! That is why I wanted to come here today and share my story. Arthritis, or Arthur, effects 50 million is the USA, some as young as 15 months or even as old as me.
I was born with osteoarthritis and hip dysplasia. Basically, my joints where hoping to support someone that was about 5ft 11 inches, not 6ft 5 inch like I am. This lead me to sprain my ankle an amazing number of times growing up or some knee pain skiing and Bogus which was usually controlled by ice packs. Relatively minor stuff, or so I thought.
In 2003 I was rock climbing at the Black Cliffs by Lucky Peak when I fell about 10 feet. I didn’t have insurance at the time so my friends rushed me to St. Lukes where I had to have 10 screws and a plate in my left wrist and 6 staples in my head. All things considered, I thought I had got very lucky in that I could have been hurt a lot worse.
As I would later learn from my Rheumatologist at the time, my osteoarthritis and hip dysplasia had a degenerative aspect to it that was not apparent when I was growing up. Due to this, I had 6 other surgeries in the following 7 years after my rock climbing accident. I have a resurfaced hip, screws and hooks in my shoulder, a plate in my neck, and both knees have been scoped. To this day I’m still showing new and painful symptoms like swollen hands/wrists, severe lower back pain, consistent headaches, and I’ve recently added a diagnosis of Gout. For those of you keeping score, that’s 7 surgeries in about 7 years and I have more to come along with new symptoms accruing almost daily.
Now, this might come as a complete surprise to some but I consider myself a lucky arthritis/chronic pain sufferer. I got to play soccer, ski at Bogus, Brundage, Sun Valley, mountain bike through our foothills, and annoy Boise drivers while riding my road bike.
A 15 month old with Rheumatoid Arthritis will more than likely never get to experience such fun. Their lives will consist of low dose chemotherapy shots (that is the only medicine known to help the swelling for a Rheumatoid patient), more pain relievers than you can imagine, supplements, and a strict diet in order to help prevent flares.
A 23 year old with Rheumatoid Arthritis, more than likely will have to drop out of college because of pain. They will try to pay for their student loans, medical bills, meds, physical therapy, and healthy eating by working as much as possible. If their lucky, maybe 30 hours a week at minimal wages. I say lucky because I struggle to get to 40 hours a week and my form of arthritis its as bad as RA.
My hope for testifying is 2 fold. First, I hope I was able to show the committee that arthritis is not something that just affects our grandparents. Arthur attacks whenever and who ever he wants, regardless of age. Arthur causes life-alternating pain, joint damage, and it forces those of us that have it to have to re-learn how to live! Arthritis is a silent disease that not many know about or realize how disabling it can be.
Finally, I want to close by asking for help. There are some basic things that can be done that don’t require a lot of money. To begin with, arthritis should be considered a disability so that my friends and I can apply for a disability parking permit. Most of us will only use it on days where the pain is just to much, we find it exciting to be able to walk without limping and we also know that our physical therapists will not be happy with us if we abuse the permit (they always seem to know when we don’t do our exercises!). Next, I’m not sure of the rules but please make sure things like food stamps are available to arthritis suffers. This disease is painful enough, please don’t make us have to decide between food and meds because our bodies would not let us work more than 20 hours this paycheck. If possible, please set aside some money for aide for physical therapy. My PT is my best friend, coach, counselor, psychologist, and if there is any time left after all that, my physical therapist. My life would be considerably worse without my PT!
As an arthritis/chronic pain sufferer I would like to thank you this event and allowing me time to come down and talk to you. I know time is valuable right now but if you have any questions please feel free to ask me now.