I have been living in a medical world since infancy, and I can not remember a time in my life when I did not have to take daily medications or have to see at least one doctor on a regular basis. I learned to swallow pills early in life because I decided that I was tired of the disgusting tasting liquid medications, and that there had to be a better way than having to be held down with someone holding my nose and mouth closed until I swallowed (I was a stubborn kid and those medicines were nasty - there were many laps run around the house as someone tried to catch me to get to the holding and administering steps). It was much like trying to give medication to a cat, only I was highly verbal and never failed to express my displeasure about the experience. I was disgusted by the lack of appropriate supplies in my toy medical kit and supplemented it with things like alcohol pads, gauze, "IV tubing", "syringes", medical tape, "nitro", "prescription medication", a "prescription pad" and an "ultrasound machine" and X ray machine. My dolls did not have "owies", they had double pneumonia, bronchitis, kidney infections, strokes, chest pain, lupus, cancer, and unknown diseases. I played out my medical experiences with my dolls, and eventually even had access to real syringes and IV tubing for the poor abused dolls. I even completed the first successful arm reattachment on a Cabbage Patch doll when my favorite doll's arm literally came undone and off of her body. I stiched it back in place and the patient survived, with just a bit of an unevenness in the length of her arms. Not bad for an 8 year old surgeon!
So as I grew up and was handed medical diagnosis upon medical diagnosis, it was familiar territory to me. I accepted it, learned about it, took control, added to my medicine cocktail as needed, added a new doctor as needed, and kept on living my life. No one could ever tell from looking at me that inside I was a war zone of chemicals and misguided immune cells and misspelled DNA and miswired parts. I never experienced any real grief or sense of loss because I had never known any other life. It was just another lemon to toss on the theoretical pile for that lemonade someone was going to make and my life was not interrupted. I coped so well because it was life as I knew it and it never changed any critical aspect of my life or my ability to live as I wanted.
So this illness is uncharted territory for me in so many ways even though I have been doing the Medical Mambo since infancy. This illness has radically, and suddenly changed almost every aspect of my life. I can not keep it hidden and it is immediately evident to someone seeing me that there is something "different" about me. I can not yet take control over this illness, and the medications are not treatments for it but treatments for its symptoms. I can not even truly educate myself because it is a rare diagnosis of symptoms, not cause. For the first time I have had to deal with the grief, the loss, the mourning, and the anger that comes with a serious illness that disrupts your life. However, since I am used to just going on as normal I become quickly frustrated when I become angry or sad or long for how things used to be. I expect myself to just "suck it up and deal". Nothing prepares you for something like this, not even 26 years of living in a medical world. There are days when my view is very positive, and there are days when I am more melancholy. There are times when I just want this to all go away, and times I feel as if I have adjusted really well to this entire new life. There are times when I can see all of the positive things I have gained from this experience, and times when the losses seem more overwhelming than the amazing blessings. Almost a year into this it is still uncharted territory and something I thought I would have been better prepared for, but find is a strange and foreign land that I travel through. It has its own unique beauty, moments that take your breath away, and it has its own rough terrain but it is unlike anything I could have ever imagined. After all, none of those baby dolls ever came with a wheelchair!