Saturday, January 18, 2014

What Would Rheumatoid Awareness Mean to You?

This is a Special Edition of Notes from the Ivory Tower, for Rheumatoid Awareness Day 2014.

Let me start by briefly telling you my story.

In December of 2011, I went to the hospital for a breathing issue. The next day, my left arm wouldn't straighten completely. Then, as December wore on into January, I began to be in a great deal of pain. By February 2012, I was missing classes due to extreme pain and fatigue. I finally went to the doctor at the end of that month, and a few weeks later, I got a phonecall from my GP, telling me that my blood test had come back positive for Rheumatoid Arthritis, and he was referring me to a rheumatologist. I was not nearly as afraid as I should have been that day. My expectation at the time was something along the lines of "I'll take meds for three weeks and be fine". Since that time, I have tried methotrexate, Humira, Simponi, Actemra, Xeljanz, Orencia, and I'm currently awaiting my second Rituxan infusion. During that time, I was going to university. When I was diagnosed, I was in my third year of my undergraduate, studying English and Theatre. I have since graduated with a BA in English, and I'm currently enrolled in an MA program, also in English.

I honestly thought I was going to crash and burn the year I was diagnosed, and so what Rheumatoid Awareness would mean to me is coming from the viewpoint of a university student.

The first semester I was sick, my GP told me that my tests had come back positive in mid-March. I was not formally diagnosed until July 2014, after changing Rheumatologists. That was one of the hardest things to try to explain to my Professors, especially mid-semester. I was clearly sick, but I couldn't tell them what, specifically, was wrong, and I didn't know what I needed other than time and understanding. Thank goodness for teachers who were willing to give me just that, because I passed every class I took that semester. What Rheumatoid awareness would have meant in that situation, and still would mean to me, is that... well, let me do it this way:
  • Patients get speedy, clear, and EARLY care/diagnosis, so that we can begin to educate those around us and ourselves;
  • Patients get clear and realistic information from our Rheumatologists
  • Drop "Arthritis" from the name of the disease... those of us who are attractive 20-somethings get disbelieved based on the "A"-word alone and it can be devastating
  • Professors, Employers, Family members, Friends and everyone in the lives of those living with Rheumatoid Disease would listen with open ears and minds
  • Universities would redesign their Disabilities Services offices so that students with chronic illnesses can function within the system, instead of around the edges and grey areas of the system
The list goes on, but those are the big ones for me, and those are the ones I would emphasize, given a choice to change anything in my life (except for having Rheumatoid Disease, obviously. If I could change that, I would in a heartbeat.)

That is what Rheumatoid awareness would mean to me, and as a student, I will continue to speak up about my disease and what I need, and I hope to continue to work with people (and there are and continue to be many in my life!) who listen with compassion and understanding.

Thanks for reading this special edition of Notes from the Ivory Tower, we'll be back next time with our regularly scheduled notes!

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