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!
4 comments:
Wow!!! If only we could all be as lucky! Congratulations on your results. That has got to be such a huge relief for you and now looking forward....so much to look forward to! I am curious about your diet and how cutting out the soda was helpful.
Hi Marilyn! well my hope and wish is that each one of us can reverse the disease process and create health in its place.
the soda just had to go. colas, diet and regular and linked ot kidney disease. and the diet soda contains nutrasweet, which is a neurotoxin. neuro as in nervous system and toxin as in poison. the fact that i woke up every day craving diet soda told me it wasn't good for me. i also noticed when i drank more than a couple a day i had digestive problems.
i read in the book Alternative medicine that 100% of lupus patients have food allergies. and yet drs never talk to us about this. the most common food allergies are wheat, corn, potatoes, tomatoes. gluten is the big offender in wheat, and wheat is in so many foods you really have ot cut out mroe than just the obvious bread pasta and pizza.
food allergy symptoms overlap so much with lupus symptoms- the lupus antibody thing is basically an allergic type of activity in the body.
GFCF is shorthand for the glutenfree dairy free diets, and you can find all kinds of info on them if you google gluten fre or GFCF.
it's easier than it used to be to eat gluten free. lots of good products out there.
what we put in our bodies every day affects our health- we all know that! but sometimes the foods we think are good for us (diet soda, wheat, dairy) are actually harming us.
well wishes.
Carla
the gluten-free/ dairy free diet is
oh and to address the first sentence- (at the risk of making someone mad):
i don't believe it was luck. it was not good luck that i got better- it was hard work. it was also not bad luck that i got sick- i believe it was the result of being unhappy (bad for you!), eating bad food, being under a lot of stress, living a life that was not true to myself, and being assaulted by the toxic stuff that is in our air, food, and water that wore me down.
once you take luck out the equation, it is empowering. we have a great amount of control over our choices, and our well-being. we're not victims.
i don't think lupus fell on me out of the sky, although i used to believe that. i made choices and led a life that was not conducive to good health.
and i know that my recovery did not fall on me out of the sky. i worked for it.
and i also know that if i stop taking care of myself, i will have positive lupus tests and health problems all over again. it's not a thing you can just fix and be done with it.
just like someone with a weight struggle or alcoholism, i will live with the responsibility of keeping myself well for the rest of my life.
but it's not a burden- it's a gift. it's the teacher that will force me to learn to love and care for myself- something i wasn't willing to do until i was forced to.
That's great news. My sister treated her lupus with diet and wrote a book called Lupus Recovery Diet. She has not had medicine in ten years. She lives in Richmond, Va and has a website at
http://LupusRecovery.com
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