Like many people with a chronic and degenerative disease, I’ve had one or more of doctors paint me a picture of an uncertain and unpleasant future. As I’ve mentioned before, I’ve had several doctors throw out a possible cancer diagnosis often enough that it goes in one ear and out the other. Why?? Who knows. Cancer is certainly never a word to take lightly…I guess I just think that if it’s going to happen, there’s nothing I can do to stop it so why worry.
The only time I’ve ever truly been affected by something one of my doctors said was at my last follow up appointment with my Rheumatologist (whom I can’t stand by the way). Prior to my appointment I had some routine blood work done to check my autoimmune ‘markers’ to see how well my body was reacting to being on the Plaquenil. My husband happened to have come with me to this appointment (he usually can’t due to work) because I knew in the back of my mind that something was going on despite the medication. Well, there’s a reason they tell you to trust your gut instinct. Turns out, my CRP levels were elevated despite pumping 400 mg of antimalarial pills into my system day after day after day. Awesome. What now?
Immunosuppressant medication. I wasn’t too keen on the idea of ‘dumbing down’ my already screwed up immune system but it was the option laid before me. I listened as my doctor explained that I would need to have more frequent blood work done to check organ function (goody), warn me against the hazards of my job (I work with kids aka little germ factories), and then ever so casually tell me that the medication would put me at a greater risk for infection, so much so that if I were to get a serious infection, it could very well kill me. “Did he just say that? Yes, yes he did”. He uttered those words. Now, if you have or work with kids, you know that their germs are essentially your germs (despite the copious amounts of hand sanitizer I use daily).
I was silent the entire ride home. What is there to say after someone, a doctor, a trusted medical professional, tells you that there’s a chance that if I caught the flu, I could end up in the hospital and possibly die. That conversation still haunts me to this day. Over the past year and a half, I’ve had multiple hospital stays due to various (mostly kidney) infections, and each time I walk through the Emergency Room doors, I wonder if I’m going to walk back out. Although I’m no longer doing immunosuppressive therapy, every cold and every infection, carry extra weight. My mind brings me right back into that exam room and all I can hear are the echoes of his voice calmly explaining my possible ‘end of days’.
…I found Rheumatologist #2 after that visit…