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.

Happy Birthday, and best wishes for happiness and health!

I go through fits and starts of journaling, but I find it difficult to go back and extract useful information out of it. I've also tried using a chart to keep track of symptoms, but I found that most days all the important info ended up crammed into the "comments" space. But I've found 2 other systems that more or less work for me. My current one is a 4x6 notebook, with one page for each day. I make a note of what time I get up, and I list my activities for the day. This gives me a good measure of my energy level. I write down symptoms in red, exercise in green, and whatever vitals I'm recording (e.g. first morning BP) in gold. I try to keep it in chronological order so I can see connections between activities and symptoms. It doesn't have all the info that would be useful, but it frequently answers my questions, and I've been able to stick with it for a couple of years now. Before that, I would make similar notes on my wall calendar, again with the different colored pens. The colors make it easier to pick out the relevant bits quickly, and they also make it more fun, so I'm more likely to actually do it.

Congratulations! So glad you've got some good news. I have the same anxiety you do about public speaking, but several teachers have told me that you actually get over that pretty quickly when you're in front of a classroom regularly. I hope that's how it works for you.

I've been on both ends of that situation. Neither one is much fun. I'm sorry for both of you. I want to reinforce what others have said: you can't fix it for her, so decide how much you can afford to do to support her, and when you reach that limit, STOP, and take care of yourself. Depression is a long-term medical problem, so it's not realistic to put your own needs aside indefinitely. As hard as it is to watch, to some extent you just have to ride out a depression, even with the best treatment in the world. Let her know she's loved, and try not to feel responsible for her happiness.

How beautiful! Thank you so much for sharing. It's often hard for us disabled single people to think about getting into a relationship, and stories about appreciative and supportive partners like yours help it seem less scary. Maybe we have more to offer than we think!

Welcome home! I'm so glad you're out of the hospital. You are such an inspiration to all of us here. spike

It sounds like you've got a lot of good advice here. It's probably nothing to worry about. Do keep it in mind as your daughter grows up, though. I was in kindergarten when my mother first noticed there was something wrong with me. At first, it was nothing that couldn't be attributed to anxiety or shyness, but it gradually got worse, and by age 12 even I was aware that I had less energy than my friends. Do ask her about symptoms -- I didn't tell anyone I saw stars and grayed out when I was little because I thought it was normal! Even if she does have dysautonomia, it sounds like it's pretty mild, and you'll recognize it if it starts to get worse. Unlike my Mom, you know what you're looking for!

Masumeh, I like your summary of the stages. I'm not sure it's a linear progression through them. Maybe more cyclic. I'm thinking about depression and flexibility in particular. I find I tend to go through a bout of depression every few years, and when I come out the other side I've figured out some new ways to make my life work better. I suspect that will be a lifelong process for me -- the health gets a little worse, I get depressed, then I find a way to work around it or to focus on a deeper level of what I want out of life.

Wow. Some really interesting thoughts here. Like Ernie says, I struggle to find a balance between giving up too easily and fighting a battle I can't win. Like Katherine, I am aware that living with chronic illness can teach you a lot about yourself, and I am grateful that I started learning those things at a young age, instead of decades down the road. I've been somewhat sick all my life, but there was a significant change when I was 19. I have had to re-evaluate my priorities and my self-image pretty substantially, and I find I need to have a flexible idea of where my life is heading. In a way, there was another transition when I got a diagnosis, because until then I thought I might someday get better. Now I know that most likely this will be with me to one extent or another for the rest of my life. For a long time, "plan A" was always to find out what was wrong, get well and get on with my life. I'd still be thrilled if that happened, but I'm not expecting it anymore. Which actually helps me relax, although it's also making me pretty depressed at the moment. I like the post-illness me. It's been a pretty miserable decade in some ways, but if I hadn't been sick, I wouldn't be who I am now, so I find I can't quite wish it had never happened. It would be like wishing myself out of existence, if that makes sense.

About the swooshing sound -- I sometimes get this thing where a rushing sound starts and gets louder until my heart beats, then it's silent for a moment, then it starts again. I end up with this steady whoop, whoop, whoop sound in my ears. Is that what you're hearing? (It would be so cool if someone else had that... ) I haven't found anything to do about the whooshing or ringing in my ears, but for me it usually only lasts a few hours. I hope you feel better soon.