jenwclark

mkoven -- That's really useful information. Thanks!

I heard a lovely interview recently with a guy named Daniel Gottlieb who wrote a book called Letters to Sam. Gottlieb is quadreplegic, and Sam is his autistic grandson. The book is about the lessons he's learned from his disability. I haven't read it yet, as my library hadn't bought it yet when I checked, but the interview was full of wisdom. I also work with a therapist who specializes in patients with disabilities or chronic illness. She is wonderful, and has been enormously helpful.

One of my ankles cracks when I'm walking up stairs. That's relatively new for me, but my knees have cracked since I was about 8 years old. It drove me crazy how often people said, "you're too young for that!" I've never had any pain or injury in my knees, so it doesn't seem to be an indication of anything serious for me.

I'm so glad you've found a doctor who is willing to learn, and one who listens to you. And congratulations. You may have inspired him to become the first POTS specialist in Spain! spike

Happy Birthday, Ami! I hope it's a day to remember. (in a good way!)

Those are some really good ideas from OLL. I think she's right that you should focus on the standing symptoms, rather than the whole range of problems. If you've documented changes in your heart rate or b/p when you stand, take those numbers with you. Also, you might do a search on this forum for "poor man's tilt table test" and ask the doctor to try that. Is your husband going with you? I know when I'm facing a doctor who might or might not believe me, having someone there with me helps me hold my ground. Don't be afraid to be stubborn and to argue with the doctor! Good luck. spike

My heart rate drops after I exercise or do anything that wears me out. Usually high 40s or low 50s. It feels pretty yucky, but it does go away with time.

Oh, Ami, I'm so glad there are people like you in the world! I can just picture that whole room full of doctors sitting there looking sheepish. I'm glad Mike is feeling good. Whatever it was, I hope it was a one time thing.

I'm so glad to hear it, Maxine! As you say, at least that's one thing off your mind. spike

Possibly, yes. Dr. Grubb told me he thinks I have Joint Hypermobility Syndrome without significant joint involvement. My skin and blood vessels do fit the diagnosis, even though my joints mostly don't. BUT the possibility of such a form of JHS has NOT been formally studied, so it's still in the theory stage.

When I bought my stockings, they gave me a pair of rubber gloves with little bumps on the fingers to improve the grip.

Em, First it was the holidays, then it was an exhausting trip to see Dr. Grubb, and by the time things got back to normal I was feeling overwhelmed by the board. So, yes, I have been feeling yucky, but only because I've been wearing myself out with important and/or fun things. Nice to be back. spike

I know what you mean! I've tried to give up, but I can only keep it up for a day, or maybe two if I'm really determined. Like you say, it just isn't an option. I so hope this EP has something helpful for you.

I usually shower in the morning, then sit with my feet up for a good 15 minutes or so before I put on my stockings. It lets them dry thoroughly and gets some of the blood back out of them. It would be simpler to bathe in the evening, because then I could put my stockings on before I get up, but I'm just way, way too tired at night. I usually exercise in the morning, as soon as I've recovered from the shower. It's my highest priority right now (on doctor's orders), so I want to be sure I do it before I use up my day's energy. But that does mean I sometimes need to ask someone to help me with shopping or house keeping.

Just wanted to say I've been there. About ten years ago, I was on one antidepressant after another before I found one that helped. At the time, I didn't have a diagnosis for my other medical problems, so they were pretty much flying blind. The drug technology has improved since then, too, so I hope you find one soon. And in the mean time, I'm so sorry you're dealing with depression on top of everything else.