I used to hate medicine. The threshold for taking even an aspirin had to be nothing short of mind-blowing pain, which in my case, was hardly ever. I did not have a medicine cabinet full of OTC medicine. I went to a naturopath and, if needed, took homeopathic medicine.
You know the old saying, ‘never say never’? Well that was a lesson learned the hard way. When I became ill, I was not eased into pill taking. I was not given a choice. Sarcoidosis was the master and I was just the unwitting victim. Sarcoidosis hit me so hard and so fast, literally overnight. I was fine the day before and woke up sick, sick, sick. When the docs starting finding all that was wrong and copious amounts of meds were required to save my eyesight and other organs, I honestly did not object. I couldn’t, I was too weak, in too much pain and completely confused about what was happening to my mind and body.
There were so many meds with different dosages, multiple times a day, some weekly, that it was difficult to manage. I had to get into a routine like no other routine I could possibly imagine. Some days it was hard to remember if I had taken a dose. I would try daily pill boxes but that would confuse me. I decided to write it down when I took it and that seemed to work for me. The shoe box on the counter filled with pill bottles became a permanent fixture. It was brought to the table with every meal like it was part of the family.
The first couple of years with sarcoidosis was spent switching drugs, lowering and raising dosages, adding more meds, because nothing seemed to work, making it harder to keep a routine going. I miss those days. Strange statement? Probably. But, in addition to continually feeling like crap, I also had great hope that the next new med would bring relief. You see, sarcoidosis does not have an endless amount of treatment options and I was blowing right through most of the standard ones. As the years went on, alternatives became scarce.
I became a chronic patient. For the last year or two, the pill regimens have stayed the same for longer periods of time. I have become accustomed to taking the same ones day after day. Autopilot pill taker. I am not getting any better and in some cases have gotten worse, but, I’m not dead, yet. One would think after such a time that symptoms would improve and/or stay the same. One would be wrong. As a chronically ill person, I have had too many ‘new’ symptoms to count. It’s an unfortunate reality that some sarcoidosis symptoms are eerily similar to the side effects of the very drugs used to treat it. The worst part is leaving the doctors shaking their heads with the inability to properly treat this sucky disease.
Now, as I appeal to the insurance company for approval of Humira, I once again find myself wishing to be the holder of the winning lottery ticket of medicine. My options are running out. Maybe this will be the med that will allow me to live a life like the others I watch around me. I had almost no hesitation when my rheumy suggested it. I suppose my hatred of pills has faded as I face another challenge to regain my health.
Why? Because I am partial to keeping my organs, I still have hope for a cure, and LIFE is precious.
So I take out my shoe box twice a day. I count out my pills into a ramekin. I swallow the big ones first, one by one. Then pour the little ones into my hand, and in one last gulp, the deed is done. It is always followed with me saying in my head, ‘fire in the hole’. Sometimes, that is how it feels. I am at war with sarcoidosis and the pills are my arsenal. I have become a reformed conscientious pill objector.