The day after D(iagnosis)-Day

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 hoisted myself into a vertical position, which was no easy task, and called his office. Naturally, 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. EVERYTHING hurt. I stumbled through getting ready as best as I could, then made up my mind. I would go to the nearest book store and clean them out of their entire rheumatoid arthritis collection in the hopes that I could read a book that would tell me what I was supposed to do. 

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 at the selection of books, hoping no one was looking at me.  I figured there would be plenty of books on RA this day and age where everybody has written about everything, twice. Ha ha ha. Boy, was I was wrong.  While there were a bazillion books on breast cancer, diabetes, fibromyalgia (surprisingly) and even restless leg syndrome (I'm not kidding. 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. 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. 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. Plus,  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 forward. 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 also decided to keep this news quiet until I knew more about what was going to happen next and 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. Luckily, 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 since my joints were, according to what I'd read at the nail salon, being eroded and damaged with each passing day. 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.

Comments

[LT]

Yes, seriously, WHY does it take so long to get an appointment with a rheumatologist?? Are there really THAT many people with connective tissue/anti-immune disorders? Aren't they supposed to be classified as kind of a "rare" disease? If so, why does it seem to take a minimum of 3 weeks to get in?

I'm 27 and am mid-diagnosis (I have one "likely" from my general practitioner, several months of joint pain, a high-ANA test, and an appointment with a rheumatologist in Sept); I've had a similar experience of being fairly appalled at the lack of RA-related information that seems to pertain to me or my situation. Your blog is awesome, I'm starting at the beginning and can't wait to see what "happens".

[Maureen]

I couldn't agree with you more, LT!! I was diagnosed about 3 months ago at age 21, and after a move to the other side of the country. I finally got enough of my RA/health/insurance information together, took it confidently to the rheumatology office only to be told, and I kid you not---"put in a pile, where they'll review your condition, and decide whether to take you on as a patient or not." And then I can get the next available appointment---two or three months in the future! No rush!
What kind of messed up world is this! I feel like I'm competing for America's most dysfunctional young adult! I don't want to win!

[Tricia Dorman]

God you're wonderful. I'm in the middle of the diagnosis, learning that I might have to be in bed for a while, while dealing with good friends and family that just don't have the foggiest clue why I don't go get some exercise, it would make me FEEL better! I wish I had the energy to punch the people I love right now. Ugh. Oh yeah I guess I'm having a flare. Thank God my mom is gonna take me to the ER today so I can get a little pain relief. (She understands because she just got diagnosed too, but I can't pound it into her head that she's damn lucky she's 30 yrs older than me!)