This Was Not Supposed to Be My Life

At one point I was extremely open on this blog–too open–and I hurt people I loved and still love out of hurt and what I considered “artistic expression” (aka deleted blogs).  I wrote things that belonged in a personal diary and which should never have been published publicly in a state of passion.  But my health is my own…I am dealing with issues and emotions too many people are dealing with and experiencing, themselves.  So tonight, in a fit of passion, I am angry and blabbing about it as I tend to do.

On March 19, 2014 I was diagnosed with Rheumatoid Arthritis after my second knee surgery (I know the date because it is my best girlfriend’s birthday).  Soon after, I saw a rheumatologist (joint doctor) and began a chemotherapy drug called methotrexate…a medication originally used to treat pediatric leukemia.  I would ingest it Friday evening, Saturday afternoon, and Sunday morning.  This doctor-prescribed medication left me in agony for almost half of every week.  I slept in the bathroom, curled around a toilet; I lost hair on my arms and patches of my scalp.  Rotted teeth and seared organs, I went without sleep and the ability to pick myself up off the floor due to a medication which was being used to manage my RA.  As I’ve said before, the doctors were clueless as to how my symptoms were threads woven to create my actual illness.

I was told I have Ehlers-Danlos Syndrome two months ago and upon hearing this change in diagnosis, I am shocked that doctors prescribed me chemotherapy without being 100% sure I had Rheumatoid Arthritis.  So, do I have arthritis?…yes, but is it a type which would have benefited from chemo?…not sure.  Could doctors have put the pieces of my health history together and figured out a certain diagnosis to replace or add to what was assumed?…absolutely.

Drugs like methotrexate have serious side effects.  As with any chemotherapy medication, one experiences nausea and digestive pain to a degree which makes it hard to breathe…so severe one’s boyfriend has to pry him/her from the bathroom tile.  In my case, I had a fifteen-year history of severe acid reflux or GERD (gastroesophageal reflux disease), and methotrexate destroyed my already-compromised GI system.  On Tuesday, I had another Upper Endoscopy (aka gastroscopy).  It is the most recent of over a half-dozen I’ve had since I was fifteen and it was mind-blowing, yet expected: my esophagus looks like hamburger.

My doctor has been scoping me for eleven years and he did not sugarcoat my situation.  My esophagus (the pipe which attaches one’s throat to his/her stomach) has been so traumatized since I began and ended methotrexate that I have to completely alter my diet and lifestyle, have another gastroscopy performed in three months, and possibly endure surgery in order to prevent a condition called  Barrett’s Esophagus and/or esophageal cancer.

So, I was continually diagnosed with a crippling autoimmune disease which could not be proven, I pumped my system full of chemicals designed to kill one’s immune system for said disease, and now the side effects haunting me from methotrexate and other issues could potentially lead to cancer.  I don’t know who to blame other than myself for trusting a surgeon and doctors who refuse to answer the phone or forward my medical files to a new team of doctors or myself.  I  have certainly never lived on water and bread, but it is clear past prescriptions only exacerbated my issue.

And so my epic continues.  I wrote a blog about being misdiagnosed and I thought that would be the extent of the story, but I now feel completely trapped in a body I do not recognize–a body that is slowly trying to kill me.  Where does this end?  One never expects his/her health to begin failing quarter-life, or that one’s quarter-life could become midlife.  At thirty-one, I assumed I would be married and have a stable career…or any career, really.  No matter how smart you are or where you end up going to school, life will always surprise you.  No one knows whether or not they will live the life they expected… I can only hope this life becomes the life I want to live.  I am banking on it.