A personal appeal from Rheumatoid Arthritis Guy
Written on January 13, 2013 by RA Guy
Write a letter and help a superhero get the healthcare he needs.
A dichotomy is the splitting of a whole into two, usually contradictory, parts. Years ago when I was an architecture student, this term was used so often (as in “let’s explore the dichotomy between x and y”), that since then I have made a point to use this word as infrequently as possible. I provide this background because when I now think about my current health care situation, the first word that comes to mind is, well…dichotomous.
A little under a decade ago, I left my high-paying corporate job (partly voluntarily, and partly because I was being asked to do something that I considered to not be legal) in order to go explore adobe architecture (the mud brick type, not the software type) in one of the poorest countries of South America. I had just turned 30 and was relatively healthy, other than for some occasional unexplained pains in my feet and knees. Even though within a couple of years of making this move I had to start using crutches (I still had not been diagnosed with rheumatoid arthritis), I somehow managed to continue to trek up steep stone Inca steps on remote islands. What about all of the pain that I felt when I woke up in the morning? Well, I would just attribute that to the fact that I was often sleeping in a tent, on hard ground.
Fast forward a few years, and my life had taken a huge turn. (I could barely get out of bed, much less climb those hillsides.) Luckily enough, soon after receiving my diagnosis of RA, my fears of not having health insurance were partially laid to rest. While it was true that I could not afford to return to my home country of the United States for health care, I was grateful that with the help of family members and with the lower cost of living here where I reside, I could just barely afford—but afford nonetheless– access to the health care that I needed. Just like that, I went from buying the latest iPod or laptop computer to buying Methotrexate, Arava, Plaquenil, doctors’ visits, physical therapy sessions, and lab tests. (I also became an expert at figuring out how to make what little money was left over pay for utilities and groceries…although I have to admit that on multiple occasions the need to eat did win out, and my electricity, water, or Internet was subsequently cut.)
While I did not have access to many of the newer treatment options that were being used by people all around the world, I did console myself with the knowledge that I had access to the medicines that I needed at the time. In addition, the culture where I live is one where doctors give patients their home and mobile phone numbers, where same-day appointments are quite common, and where home visits are still, on occasion, conducted. (Compared to many of the stories I heard from my superhero friends who live in “richer” countries, I truly felt that these last few details were definitely a blessing in disguise.)
As for access to some of the newer treatments, those that I would need as my disease would inevitably progress, well I figured that applying for Disability benefits would help resolve this issue. After much thought and—yes–delay (partly due to denial and thinking that my health issues would magically disappear the following day), I finally reached a point where I determined that it was indeed necessary to request such assistance.
That was three and a half years ago. Having been already denied twice, I am currently in my third appeals process, and am still waiting for an answer.
When it comes to my health care and the newer (more costly) treatment options that I need, though, I can no longer afford to wait. It’s no longer even a matter of trying to control the pain. It’s a matter of ensuring, as much as possible, that I am able to keep moving.
I have started this New Year determined to find resources that will help an individual in my situation (which, as you can now tell, is indeed quite dichotomous—split into two completely separate and contradictory parts!) I recently posted a personal appeal on my blog, asking for friends within our community to kindly submit letters of character reference. I have already researched some financial assistance programs within major medical institutions in the United States, and my plans are to attach these letters of community support to the required applications.
I close by reiterating my personal appeal; by asking people to please take five minutes from their busy schedules in order to support me in reaching my goal. (More information on the format and content of these reference letters can be found at http://www.rheumatoidarthritisguy.com/2012/12/help-a-superhero-a-personal-appeal-from-rheumatoid-arthritis-guy/)
After all, it’s not every day that you have the chance to help a superhero!