I spent today angry. The amount of anger I found enveloping my heart and my head, is entirely unusual. I'm the kind of person that gets angry and uses it as a call to action or a means to change. Not a doorway to despair.
Today, I was not myself. I was angry.
Angry to the point of endless tears and a 4 hour nap.
Angry at the disease that bombarded my life when I was a toddler.
Angry because I am at a point in my life where I should be growing and giving life to ideas and dreams and babies, yet I wake each day with the fear of lost functioning and threatening side effects.
Angry at the damage that has already been done.
Angry at my maternal genetics -birthed in an orphanage and possibly harboring answers behind sealed records.
Angry at my paternal genetics – part troubadour, part restless hitchhiker. The mysteries that lie in the code totally unknown.
Angry at every inflammatory cell that storms my body and wrecks hell on their captor.
Angry at the future. For being shroud in mystery.
Angry at the sunlight. The life-giving radiance is a painful sight for sensitive eyes.
Angry at the pharmaceutical companies. At their lies and covert missions.
Angry at for-profit health care.
Angry at an oppressive and ill-named “healthcare” system.
Angry at every doctor that refuses to see an uninsured patient. You get to pick and choose your cliental. We don’t pick our diseases. Or our fate if they are poorly treated.
Angry at the fact I’m angry.
The day started with a decent amount of hope and light. But it quickly sank into dark and familiar places. I am once again confronted with the reality that healthcare – decent healthcare --is for the privileged and not for the masses. I am in a period of tremendous disease activity. As usual, the life-sucking inflammatory cells had to make a grand appearance in my eyes. This was a signal that I was escaping the control of the current immunosuppressant therapy and needed to make an adjustment.
The problem is finding a doctor that understands rheumatic diseases in young people and will also be a team player on my treatment team (which includes a primary care doctor, an inflammatory eye disease specialist, hematologist and rheumatologist) Yes, I have a disease that attacks and destroys and leaves the battleground (me) torched. I’m also a single, 20 –something adult in graduate school. I live with dreams and possibilities before me. I want to remain as active as possible and not let the disease sideline me. Managing the disease is difficult. Managing the side effects of treatment, in light of my current place in life in overwhelming. Financially affording my disease is impossible. I’m not trying to be difficult, or question the judgment of a doctor when I bring up financial concerns in during an appointment. I’m trying to live in the real world. The world where my grocery budget depends on my medication list. The one where I sell my DVD collection to buy eye drops. The one where I’m just trying to survive in the world and finish school so that I can have a job with insurance.
Maybe I just needed an angry day. I woke up from a nap and felt better. Not cured. Not in control. Not at peace. Not OK. Just better than where I left off. Maybe that’s the best I can ask for today.