It’s a breakthrough! I’m turning the corner! … ahem… yes… okay, again…. All the previous turning points and breakthroughs were only practice. THIS time it’s really real.
….I hope.
This is a story of why Facebook isn’t simply a huge productivity drain on our global economy, nor a devious Big-Brother-esque means of gathering information about all our potential purchasing decisions. This is a story where Facebook is the good guy. I joined this POTS support group on facebook a few weeks ago, and posted a question there as to how I could get a dr in Cleveland to help me do the Levine POTS study I’ve been trying to get into since about September of last year. There someone– I’ll call her Ann– wrote me back, suggesting that I go to the Syncope Clinic at the Cleveland Clinic and that they would hook me up. This being none other than the home of the infamous tilt table test I did in December of 09, as well as the radioactive blood test I did in January ’10. (I hadn’t asked them because due to the previous “don’t exercise” philosophy I found there I thought it would be pointless.)
Ann and I got to e-mailing back and forth and found a series of incredible parallels in our recent health struggles. She too is a busy mom, and she too was struck ill in June of 2009, while at a child-related event (her, soccer: me, school picnic). We’re about the same age. She has POTS plus fibro and I have POTS plus migraine, so that’s slightly different. But we’ve both been on the same path– we’ve dealt with many of the same doctors, and both were even tilted in the same room at the clinic. And both of us have found this road to be long, tiresome, and ever-winding. She’s my lost twin! We talked on the phone last week and found ourselves struggling to cover lots of ground in a small period of time. It’s just so, so nice to find someone who truly understands.
At first it seemed that Ann was already set up at the Clinic and doing the test herself, and all I would need to is follow the trail that she had blazed. Then it turned out that it was still rather iffy and pending due to the horrible fickleness of doctors. BUT, she had taken the extra step of finding a special medical personal trainer who could work with people like us.
Long story short, I got in touch with the personal trainer guy. His name is Frank. He says he can basically emulate the study without actually doing it formally, and hopefully produce similar results. He works at the Clinic, can open up all the reams of testing that has been done on me, and see what the deal is.
Bottom line: I’m going to go see him on Tuesday! He’s going to put me in a complicated heart monitor of some kind on me, and put me on a recumbent bike to see what’s really going on in there. He said I would likely need to wear a halter monitor for a couple days round the clock to record what my heart is doing– I’m intrigued by this because I can tell you that it does seem to behave strangely at times.
Yesterday I said goodbye to my beloved Vince at vestibular therapy. I said, “It will be so nice to be able to exercise without worrying about fainting all by myself in some health club.” Vince said, “Or worse.” I said, “Yeah– or dying!” I was laughing, but Vince said rather gravely, “I was not all that worried about you just fainting.”
POTS isn’t usually fatal btw, although some people have conjectured that starlet Brittany Murphy died of it. I guess the concern is that no one really knows what functions are at play with POTS. The science is still very primitive. The old-school idea is to play it safe and not stress the heart any more than it already is stressed by normal life. A quote from the POTS website:
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms. Research shows that POTS patients’ quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease Twenty-five percent of people with POTS are disabled and unable to work. Most patients will have to make some lifestyle adjustments to cope with this disorder.
No–this will be much better– in the Cleveland Clinic, IN a hospital, with lots of elaborate monitors and health professionals on hand, I will be able to elevate my heart rate without dread. I think that this will be very freeing– because I’ll be able to challenge myself. Without knowing where the “line” is, and with the ominous warning of the Cardiological Goddess to not exercise at all hanging over me, it’s been very threatening to approach my fitness goals at all.
So– onward! I’m happy and excited about what this new phase will bring.
On a lighter note, the boys have come up with a couple amusing terms for you. You know that horrible thing that happens sometimes to males, when a body part gets caught the zipper… (see “Something About Mary”)… that’s called the Penis Fly Trap. And you know when your mother goes insane and starts storming around the house and yelling? That would be the Tsumommy.
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