*Repost: Getting diagnosed with rheumatoid arthritis over voice mail is way worse than being dumped over voice mail.

In honor of World Arthritis Day, a look back at the onset of my RA and my diagnosis....almost exactly four years ago to the day.

(Originally posted June 15, 2008)

A good month or so after my symptoms had started, I finally faced reality and went to the doctor.  I went to my general practitioner, who was around the corner from where I work. There were a million thoughts running through my head, and I kept trying to get a read on my gut feeling- was there something really wrong with me? Was this all in my head? Would it be something big?

I really couldn't tell how I felt. I sat in the waiting room, hating the fact that I was there but trying to remain casual and pretend like I was there because I had a cold or pink eye. Finally, I was called back.  We went over all my symptoms, he asked me a bunch of questions, and then he took a lot of blood. I always hate that part (does anyone not, though?).

Scary words were tossed out like lupus, lyme disease, rheumatoid arthritis and several others.  He said he should hear by the end of the week, and that I should make an appointment to get my results. Yippee. In the meantime, he had me start taking naproxyn in the morning and evening to help alleviate some of the inflammation and pain.

I trudged back glumly to my office and did what most of us do this day and age.  I immediately googled every disease and ailment he had tested me for, and promptly scared myself into a doomsday version of all the horrible scenarios about to befall me. What if I had all of them? Or what if I had none of them, and it was really all in my head?

Suddenly, I realized that I was hoping he would find something, because it was becoming more and more clear to me that what was happening was not a figment of my imagination.  At this point, my regular yoga practice was nearly impossible because my toe hurt so badly, my wrists and fingers were swollen, and I couldn't lift my arms much above my waist. I tried to breathe deeply and practiced a lot of restorative yoga poses that week, at one point breaking down and crying because I knew that whatever was going on was beyond my control, and I would just have to wait until I found out. There is no fun or witty way to describe this week. I was scared shitless, and it sucked.

(You are probably wondering what the picture above has to do with this post, but relax, I'm getting to that.)

The interminable week finally went by.  I went back to my doctor, who told me some good news: it wasn't lupus or lyme disease (YAY!!!!!!!!!!!!!!!). I immediately ruled out scary scenarios one and two.  My rheumatoid factor levels; however, were slightly elevated above average, so he wanted to do more tests since the results weren't conclusive.  More blood. The results would again be ready by the end of the week or early next. 

Thing was, that Friday, I was heading to Greece- part vacation (boy did I need one-from my life) and part work for a festival that was happening in Athens.  He told me to go ahead and go (honestly, I'd not considered not going- I figured if I was sick, I might as well be sick in Greece), and that if the results came in after I had left, he'd call me and leave a message. That sounded like it would be a horrid way to get bad news, but I wasn't going to call off the trip just to get it in person, either.

So I got on a plane with one of my friends who was coming along, and we flew to Santorini.  The flying hurt, and took forever (thank you British Airways for your terrible delays).  But, the next morning, which was also my 29th birthday, I woke up to that beautiful view above outside the door to our hotel room, and that made things feel a little better, if only visually.

I was in Greece all in all for about 10 days. In hindsight, I have no idea how I managed to get by.  Our hotel was perched on a cliff, accessible only by little bumpy, windy paths, but I walked all around to the different villages as much as I could, and got by alright. I'd be damned if I was going to let this stop me from seeing everything I wanted to see and enjoy being in such a beautiful place.

On about the third day, a voice mail icon appeared on my phone.  I just knew it would be my doctor, and I decided I didn't want to find out while I was on vacation, so I decided to put it off until I was home.  Plus, checking voice mail on my cell phone from Greece would have cost me a lot of money, and I sure as hell wasn't going to pay to be told I had some kind of disease.

I spent the next few days drowning my fears in lots of Greek wine and delicious food, and by the time we got to Athens, I was swept up in the busy schedule of the festival.

Finally though, it was time to go home. This process took a ridiculously long time thanks again to British Airways in what has to be the most miserable experiences I could have had at that point.  We ended up being cordoned off in line for about six hours while they decided whether or not they were canceling or just delaying our flight. (I ask you, does it really take six hours to answer this question?) We ended up getting rebooked, and the only good thing about it was that Anthony Bourdain and his cute production crew from No Reservations had apparently been in Athens filming and were booked on our flight all the way back to New York, so we enjoyed stalking them at the airport, immigration and customs (even in my painful state, I was able to rouse myself for a good celebrity sighting. Hey- I deserved some cheap thrills).

As soon as we got in the cab at JFK to head home, I decided it was time to find out. After all, if I had something, then I already had it, and this would just be a verbal confirmation, in a way. I called my voice mail, and there was my doctor's voice, telling me that the tests for rheumatoid arthritis had come back 'strongly positive,' so it suggested that that was what we were looking at. It was the one test in my life I hadn't wanted to get a high score on.

I think the moment of diagnosis is impossible to describe fully, but emotions I remember feeling included relief (oddly), total shock that something was really wrong with me even though I knew there was, and fear, of course.  And I have to say, hearing that over voice mail had to be the worst possible way to get that kind of news, but there it was.

One week into my 29th year, I officially had rheumatoid arthritis.

Comments

[Big Brother]

You have a gift for writing and making light and the best of a hard time. The emotion flows through your words as you talk about your experience. Keep it up.

[SGRA]

Hey BB-thanks! your encouragement means a lot-all the way from across the world, no less!

[JB]

"I immediately googled every disease and ailment he had tested me for, and promptly scared myself into a doomsday version of all the horrible scenarios about to befall me. What if I had all of them? Or what if I had none of them, and it was really all in my head?"

I did the same thing! I'm positive that my problem isn't any of those things (leukemia, lupus and RA), but I won't know for sure until I see the next doctor and have more tests.

Your blog is fabulous, BTW.

[Sara]

HI JB,
Thanks! Seems like you are right in the thick of it. I really hope that it won't turn out to be Leukemia, Lupus or RA (or anything worse!). Waiting for the doctors and tests is so grueling-my thoughts are with you!
Sara

[Joint Pain Relief]

You certainly have the right attitude and you should be an inspiration to others.Hope everything goes well for you.

[Sara]

Thanks, JPR! I am doing much better now.
Sara

[Kayla]

I have no idea how you were able to wait patiently for your diagnosis. I just had my bloodwork done today and am so distracted (and during Finals week of all times!). I wish it was just an overnight thing. I'm twenty and the ideas of any of these diseases (which I've been googling ALL day) is not appealing at all.

[Sara]

Hi Kayla,

It is agonizing...and the googling makes it worse!!! If you can make yourself stop, it might be for the best. I did a lot restorative yoga and meditation while I was in limbo to help me focus on what was right in front of me. It helped me through it, but you are right- it's nearly impossible not to be completely distracted and worried. Take care, try to get through your finals as best you can, and take it one day at a time...
Sara

[Marietta]

Hi Sara,
So glad to see you blogging again!!
What a great post. Everyone has such a unique dx story (I don't mean the symptoms, but when you finally get the news), I appreciate you sharing yours.
-Marietta

[Sarah]

I honestly never expected to HOPE that I would have Lyme's but wow, I really did. I was devastated when a psychotherapy client started telling me how he thought he might have RA, and suddenly it dawned on me, omg, I have RA. Shit!!!!! Even though it runs in my family; I guess I thought getting away from my family would me I was immune. Damn. I got the news through a letter. It sat on my table for weeks.

[Lemon-Aid]

Big sigh! That is a rough way to hear the diagnosis but it's waaaaay better than hearing it in Greece on vacation ;-)

Your writing is terrific and I see the disease hasn't taken away your sense of humor. RA is no picnic. I'm sorry and hope you are managing it well.