Friday, January 30, 2009

Test results back: No More Lupus!

I just got back from the rheumatologist and my tests for lupus all came back NEGATIVE! Negative ANA and Negative for double-stranded DNA. I'm not sure they've ever been negative in the 16 years since diagnosis.

If my doctor was a jerk, he might have said I’d been misdiagnosed and never had lupus in the first place. It’s hard to say that in the face of my having had pretty much every lupus symptom a person can have- and yet there are many doctors who do this.

The idea that someone can test negative after years of testing positive- or that someone can get completely better from a disease that in their minds has no cure- it just rocks their world. So, many doctors just decide to negate your entire experience – both the pain and suffering and the hard work you did to get better- by saying you never had lupus in the first place.

Thankfully my doctor is not one of those folks and his pen was actually moving while I babbled about Chi Gung and the gluten-free dairy-free diet. And this is how we start a health revolution: taking care of ourselves, and letting doctors know when we find a non-drug therapy that works. Doctors get information from drug reps and patients. We may not feel like it sometimes, but we are just as important as those drug reps.

If enough people start mentioning Chi Gung or gluten free diets, or any other effective alternative treatments, doctors will start taking it seriously and suggesting it to their patients. And patients will start taking back control of their health. That alone is a revolutionary act, which will lead to a better sense of well-being and hope. Those patients will fare better, thus raising the doctors’ eyebrows again about these methods of self-care that we can use to supplement whatever they prescribe, and he/she will open their minds even more to the idea of using complementary medicine.

I just called a friend of mine to tell her my tests came back negative. She and I were hanging out just a couple weeks ago and I was telling her “My tests are going to come back negative for lupus and some doctor is going to claim that I was misdiagnosed, even though I’ve been diagnosed by probably 20 different doctors by now, tested positive consistently for 16 years, and been through every lupus symptom in the book. And it’s going to make me mad, but in the end, the important thing is I’m recovered from the illness and I know the truth in my heart.” I also have the truth in my reams of lab results.

The biggest leaps in my recovery this time have come since quitting drinking diet soda, starting Chi Gung, and going on the gluten-free/ diary-free diet. The final piece of the puzzle was my declaring and steadfastly believing that I would get the lab results to say “NEGATIVE” for lupus, and they did exactly that today.

How to celebrate? I joked to my husband that we should go out for gluten and diet coke. I thought his face was going to shatter to pieces with all the contortions it was going into. Nope, I’m not going back to my old ways- I’m moving forward, and I can’t think of a better way to celebrate being strong and healthy than to go to Philly and run the Rocky steps! Today, the great lab test results- tomorrow, the world!

Sunday, January 25, 2009

Where in the World is Carla?

Hey everybody!
I haven't posted for a while, as my focus has been completely on my new project: writing a book!

i got a book deal with a small press right after my last post (Fixodent and forget it). The book is set to come out in june. i imagine it'll be a paperback and a reasonable price. that's what i'm shooting for anyhow.

it's a book of humorous essays on illness, hospitals, doctors, drugs, and getting better. the book has some of the same topics as the blog, but it's going to be far more organized. and it won't have nearly as many typos and run-on sentences as my blog. but i promise to keep it sassy.

it's due this week!
i may be just a little late on the deadline because i have to just have the sense to stop when i'm exhausted. no need to create another volume of hospital stories by having another escapade with lupus. i don't deserve that much fun ;)
besides, after 3 times around with this thing, i think i have enough hospital horror stories.

i'll be tapping away on ym computer tonight, tomorrow, and beyond.
meanwhile, i've gone back to doing a little guitar teaching to keep some money coming in. i'm good at it, i enjoy it, and i'm glad to be back to it. i stopped when i moved to new jersey (you lose your students when you move...) and i just spent all my time on the road performing, which is a good way to run down you health.

if any of you have XM radio, check out all the great programs on the Oprah channel, XM 156. wow. so inspiring. i listen jsut about every day, usually to Dr Oz's show. if he were my doctor, i'd have a much higher opinion of the medical community.

well i better sign off for now. just wanted to jot something here so you'd know that no news was good news. i'm well, i'm taking my pills and vitamins, i'm going to the gym, and life is good!