Monthly Archives: October 2008

O o

My pupils look like this:

O o

It’s been like that for at least a month. I didn’t notice, someone else did. It’s more noticeable in dim light so I think the weird one isn’t expanding right. I have a Dr appt this afternoon.

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The tests at the Vanderbilt Autonomic Dysfunction Center were interesting. Everyone was professional and nice. The food wasn’t bad. I didn’t miss caffeine as much as I expected, nor did I get a caffeine withdrawal headache. First thing I did, though, was stop at Charbucks on the way home.

My resting heart rate is Olympian-athlete low. 50-55. When I stood for tests it went from 55 (supine) to 140-something. So I participated in 3 research studies while there. One was just taking blood, one was standing for an hour & blood draws/urine collection, & one was a bunch of autonomic nervous system tests like holding your hand in ice water for a minute, blowing into a closed tube, etc.

I’m supposed to eat 10 grams of salt per day but that is hard for me. I am eating a lot of it though. I also have a prescription & that is helping, yay, but I am still having some nausea. Not as much as before though, and I haven’t barfed since I started taking it. Fascinating, I’m sure. My pain level went down quite a bit once I started the prescription (child dose of beta blocker a few times a day).

My cardiologist said not to worry about the low heart rate. I had an echocardiogram & my valve leakage is within a normal range.

I’m still having what I would describe as crushing fatigue, though the medication lessened it a bit. I’m going to try more Magnesium and Vitamin D, since I guess at the EDNF Conference this summer it was announced that there is something goofy with that and EDS, on the cellular level.

A couple EDS-related newspaper articles:

Local woman hopes life of pain can educate about rare disease

Local woman moving to Belgium for healthcare

Still waiting for my accupuncture appointment.

The Thinker. But not.

The waiting list for the Vanderbilt Autonomic Dysfunction Clinic is 1 year, LOL. I applied to be a research subject there & viola! someone canceled. I go in tomorrow for 3 days of tests. Maybe now I’ll hopefully get a bit of resolution on the POTS. I’m lucky in that I am in the Nashville area.

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This how I’m dealing with the ribs, courtesy of my PT:

Sit down on something in a way that someone can access the back of you. Lean forward & rest your elbow/forearm on the area above your knee. (Kind of like “The Thinker” but don’t put your chin on your hand or you’ll punch yourself in the face.):D

Have person (behind you) lean their elbow into your back, at the edge your spine, & press hard all the way down. That puts the ribs back. If you are sitting with your right arm on your left leg, the person would use their elbow down the right side of your spine. If you are sitting with your left arm on your right leg, the person would do the left side of your spine. Repeat as needed.

Check with your Dr. before trying it, you wouldn’t want to hurt your back. This pushes my ribs back in place. They come out again though. 😦

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