Wednesday, June 17, 2009


Just wanted to update that yesterday's blood patch was worth getting up at dawn for -- the head and neck pain disappeared by the time I woke up from the light sedation the doc administered.

The only odd part is apparently they had a lot of trouble getting blood out of me for the patch. I was lying on my stomach, face down like on a massage table, and my arms dangling off the sides of the table. My last memory is of one of the nurses tying my arm to aid in getting a blood sample, and the anesthesiologist saying the vein in the center of my right elbow looked like a likely candidate.

I'm always a little challenging to get blood from, but there are four needle marks in bend of my right elbow, two on my right wrist and two to three on my left wrist. I've got huge, horrible bruises on both wrists, which are a little sore and I've been icing.

Meanwhile, I'm learning yet again the benefits of social media. I'm on Facebook and Twitter, like the rest of the world. (I'm very dull on Twitter and don't use it extensively.)

But yesterday, someone I didn't know sent me a tweet asking if I was familiar with the National Institute of Health's Undiagnosed Diseases Program. I'd never heard of it, but luckily the guy gave me a link and wow! I've already printed out the letter to physicians so I can take it with me when I see my internist next week. It's a lot of work for her, but I'm hopeful she'll agree to do the referral I need.

If I'm accepted into the program, the costs of meeting with lots of top doctors and doing whatever tests they want to run is free to me, and the program might even pick up my travel costs. And while they make it clear that they cannot guarantee a diagnosis for every patient in the program, it seems like if I'm seeing doctors who specialize in rare and/or difficult to diagnose diseases, I stand a better chance of getting a diagnosis.

Cross your fingers for me, everyone! And if, like me, you've got a mystery illness, follow the link for the program and consider asking your doctor for a referral for it too!


Shiri said...

Have you read the article in the NYTimes Magazine about the program? I got a bunch of those emails, too, after it came out, but I think this could be amazing for you!! Good luck, and I'm glad the headache went away.

Sherril said...

My fingers are crossed for you!!! If they don't think you're sick enough, that's just crazy.

Jeanne said...


I'm sorry they had trouble getting blood drawn and that you're bruised. :(

I'm on Facebook and twitter and I have to say that I didn't use twitter much either... until I discovered TweetDeck.

Wow! What a difference. Using twitter from the web was not my favorite. Managing my tweets with TweetDeck is a whole different thing altogether!

It can be downloaded for free and I highly recommend it. It's a desktop application. The only thing I should forewarn you about is that it's a bit of a memory hog. So some computers might not be thrilled with it. (I had one blogger friend who loved it but had to uninstall it because her computer was having trouble.

I have found twitter to be a more useful tool than Facebook for connecting with other chronically ill patients. I use both but I use twitter more.

Anyway, I'm glad you found that program that looks helpful to you and I hope it does help you!

I have plenty of firsthand experience with "mystery illnesses". When the show House comes on, my husband points to the patient and says, "that could be you".

It's true. I've had some unusual things over the years, to be sure!

Best of luck to you! I hope you get some answers real soon!!!