What exactly is one supposed to do the day after being diagnosed with a chronic illness?
If you are me, you lay in bed for a long time, stare at the ceiling and feel really weird. Was I supposed to tell people? What do I tell them? What am supposed to do next?
One thing I did know was that I had to call my doctor back, so I managed to hoist myself into a vertical position (which was becoming no easy task- cranes would have been most appreciated) and call his office, where of course, I couldn't actually talk to him, but I left him a message.
It's funny the difference knowing you are sick can make. Every wince and pain I'd been holding at bay or pushing through the last few weeks when I was waiting to hear that something was officially wrong with me suddenly gave way, and EVERYTHING hurt. I stumbled through getting ready as best as I could, then made up my mind to go to the nearest book store and clean them out of their entire rheumatoid arthritis collection, hoping that I could read a book that would tell me what I was supposed to do now.
I walked into the Barnes & Noble and marched (ok, hobbled) my way over to the health section, feeling a little strange and a bit like a social pariah as I located the shelf labeled with the word DISEASES. I started looking (hoping no one was looking at me), figuring there would be plenty of books on RA this day and age, where everybody has written about everything, twice. Hahaha. I was wrong. While there were a bazillion books on breast cancer, diabetes, fibromyalgia (surprisingly) and even restless leg syndrome (I'm not kidding folks, I didn't count them, but there were multiple books on this topic), I could only locate one lone rheumatoid arthritis book on the shelf. Geez, seems like if I had to get something, couldn't I have at least gotten one of the popular diseases? Apparently not.
I went up to the register to buy it. As I put it up on the counter for the woman to scan, I felt suddenly very self conscious, realizing the cashier would obviously know that I had rheumatoid arthritis, because why else would you buy a book called Living with Rheumatoid Arthritis unless you were? And that's when I got my very first deer-in-headlights/pity look (god, how I hate those.) I threw down the cash, grabbed the book and headed out.
Well, that felt weird and crappy.
I skulked down the sidewalk, not sure what I wanted to do next, and then decided to go get a pedicure. (I mean, when all else fails, why not?) After the flight from hell, version 2, my ankles had joined the swollen joint party that was my body, and my toe was becoming a full-fledged disaster zone, so I figured having them soaked, massaged and coddled was one thing I could do for myself that day that would feel good, and I could start to read up on this thing that I had, even though that would mean pulling out my book and outing myself in public.
Mid-pedi, my phone rang. It was my doctor calling back to give me the name of a rheumatologist at Beth Israel, who would be taking over from this point on. I couldn't think of any questions to ask him while I was on the phone with him, and I didn't feel like announcing to the entire salon that I had a chronic illness and had just found out, so I scribbled the name and number down, hung up, and waited for my toes to dry.
Once I got home, I decided I needed to formulate a plan of action. I decided to keep this news kind of quiet until I knew more about what was going to happen next, and until I'd had time to absorb the news myself.
I called the rheumatologist's number, but the secretary informed me that he didn't take my insurance, but another doctor (a woman!) did. The earliest I could get an appointment with her was in three weeks, which to me seemed very far away, especially since my joints were, according to what I'd read at the nail salon, being eroded and damaged with each passing day, but I didn't really know what else to do, so I booked it.
Then I took a big, deep breath. Those three weeks were going to be an eternity.
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