Have you been away? It seems that I have pondered that question over the past few months. The joy of writing a blog and living with a chronic illness is that sometimes the dis-ease takes over. In this moment I sit here wondering how I got to this place again.
Guess I better clue you in to the next part of the journey.
Five years ago I gave up being sick. The vegetarian boyfriend helped as I became someone who ate VERY well for the state of wellness to take hold. Stress elimination is my favorite stress management. Fast forward to this past nine months. Finding myself in the hospital over and over again, nearly every two months or so, I thought maybe it was time to go back to the specialists. Living three hours from where the practitioners practice, I willingly walk back into the cycle of driving, doctors, tests, and the merry-go-round began. This last week included a visit with a rheumatologist to see what she could find out about how to get off of the merry-go-round. I have been a passenger on this ride before.
New patient visits are always fun when a person like me has been living with a disease like Lupus since 1993. The questions, the history, and more importantly what I am willing to do as a patient to play in the land of western medicine. My experience has shown me that tests don't often tell the tale, but I have not had the full battery of tests checking my disease in years. I left Dr. Crowley's office on Monday with twenty different lab tests. Can I hear an "oh my gosh!"
At the lab this morning I was told that there would need to be seven vials of blood drawn to cover what the doc had ordered. Oh but let me back up. The doctor's office had called this morning after reviewing records from my last stay in funny jammies right before the benefit for the United Food Bank a few weeks back.
"Doctor Crowley wants to put you on Imuran immediately."
Imuran is a pretty toxic friend for those with inflammatory or immune system malfunctions. I took it years ago, a chemotherapy whose first side effects are malignancy. To really understand what I am talking about follow the link IMURAN (asathioprine) where the fun really starts. My father died from lymphoma. My mother is a breast cancer survivor. I really try to avoid any drug whose first "side effect" is malignancy or cancer.
My rule in the land of practitioners of medicine is a bit like Missouri - show me. I went to the lab, found out exactly how much blood they were needing, got stuck three times and sent away unsuccessful in providing the materials needed for tests on my anticardiophospholipids and neat stuff like that, Tomorrow is another day I say.
In the meantime I write, If the blood doesn't justify the toxicity of the cure, no is a complete sentence. I am well right now, in this moment. I hate being scared but in reality none of that changes the reality of my dis-ease. I have missed you all, the ramblings of my soul.
One thing I know about the merry-go-round is that I can get off the ride any time I want. I can and do have the right to say no to treatments that can cause severe harm along with the good. I guess it is today that I will go see the vampires.
In the meantime I promise not to stay away so long or don't let the illness get you down. I will let you know what happens next - to chemo or not to chemo, that is the question. . . .
