As I worked to get this blog up and running (the project manager in me can’t help but to approach it in a somewhat calculated way) I tried to write an introductory post about why I was writing it to kick things off. Things like: Why am I writing a blog? Why now? What do I think I have to contribute? I never came up with a post that I liked enough to even share with friends for editing, but two weeks ago as I sat in the Rheumatologist’s office getting my head kicked in with shitty news, I knew that I had to write it, and, write it NOW, even if it is just for myself.
On that sunny Wednesday, my doctor and I discussed the urgent need to get my VERY active RA under control immediately. This is not something that can be done easily as many of the most effective RA drugs (known as biologics) usually take 4-6 weeks to make a marked impact on symptoms and disease progression. And so we arrived at a logical, albeit unenviable decision: to go back on Methotrexate, a fate I managed to avoid for more than 10 years. Methotrexate is a Chemotherapy drug that is used in low doses to treat moderate to severe Rheumatoid Arthritis. And, while it has grown in popularity over the years, the side effects fucking suck. Maybe not for everyone, but the last time around I experienced nausea, vomiting, loss of appetite, hair loss, “chemo fog” and a weird skin side effect in which my skin lost the ability to tan. At all. Even in Phoenix. Sans sunscreen. In June.
Taking Metho is bigger than side effects. For me, it also represents a failure of sorts. Failure to “beat” this disease without the assistance of devastating and toxic drugs. Failure to maintain a relatively normal existence without being slowed down (or stopped entirely) by medication or its side effects. Two weekends ago I ran MuckFest MS with an awesome group of friends and neighbors.
My ability to run the race did not mean that my RA wasn’t in a very active, very painful state. What it meant was I was just
stupid crazy driven enough to push through that pain to challenge myself physically and mentally. And so I did and it was awesome. On the car ride home I couldn’t help but wonder “Would I have been able to run this race if I had taken Metho Friday night, or would the side effects have left me on the sidelines?” There is no way to know for certain, but what I do know is this: the only way that I can continue to “beat” this disease is to push through that pain, to challenge myself even if the finish line is only a day at the office or going out with friends. And to do it in an all-out, ‘take no prisoners’ kind of way.
And so, while this first post answers none of the questions that I originally posed to myself, it is fueled by a deep and primal need to share these daily battles. To give a voice to all of the ‘what ifs’ and unanswered questions about my future that swirl endlessly inside my head. And with the hope that somewhere along the way my journey will resonate with others in the Arthritis community and beyond.