roxie

I just finished this book and thought it was good. There is a large part of it geared at teens or parents of teens BUT you don't miss anything of you skip those parts! I think the second of have the book put together by Dr Svetlana Blitshtyn is the best. She touches on the mechanisms but what I liked the most is when she talked about coping. Dr Blitshtyn seems to have a good understanding of our struggles and have some great advice on coping, at least I think so

I hear ya! I like upbeat music or a good movie, I think sometimes the best thing to do if your struggling emotionally is go talk with someone who gets it. If your down from just not having enegy than simple distractions help amd chocolate, I wish i could eat chocolate all the time! I find my little dog cheers me up too

I've thought about beading. I think if you can easily set it up it may be possible! Like if you're n the couch or in a recliner you may need a tray so you don't loose all your beads. I think knitting takes more energy than crocheting. You could try a knitting loom like Jen does. Or you could try crocheting, I taught myself from a book and YouTube videos!

I wonder the same thing, issie. If I knew there was something I could do, I would do it! I believe parkisnon's is a form is dysautonomia. I don't know of parksinon's in my family. My grandma has Alzheimer's though.

Ooh potsyturvy- sugar art! I hey it's beautiful Corina- I looked up mandala's. They look like doilies! It doesn't bother your eyes? I have eye problems....that may not be related to pots, idk Jen- I've never used a loom but in seen them before!

Corina- what do you do with everything you color?? Do you all force yourself to stay occupied with low key activities even if you aren't feeling well. I struggle finding the balance of even simple things and just laying back with my eyes closed

I can't spell * crocheter * decided

This sounds totally funny but i wonder if knitting or crocheting could help channel those feelings some? http://www.knitonthenet.com/issue4/features/therapeuticknitting/ I've been reading about this lately. Google it then are tons of articles on the benefit of needlecraft. Some studies have shown it to be as effective as yoga or meditation. I used to be a knitter & crocheted but had stopped. After reading this article I decked to pick it up because it sounds like it could be an amped up version of biofeedback!

I don't have general anxiety of anything but like you puppylove, I'm terrified of vomitting or being around people that have been sick and I have this weird blood pressure anxiety. Ever since I've had some bouts of hbp I feel panic everytime I have my bp taken. My dr wants to me retry midodrine and it freaks me out to think I'd have to take my bp daily

My heart breaks for you Jen. Sometimes we have to feel the sadness in order to let go of it. I wish I had better words of wisdom. I've been bummed out myself too. I'm doing everything my dr'd have said and I'm surviving but I don't feel good. And its like when is it going to let up??? As far as treatment, idk, you've probably got all the med stuff from dr's. Have you tried deep, diaphragmatic breathing practice? It's not going to cure anything but it may help you feel more at ease and in time with regular practice settle your heart slightly. The other thing is you're trying to be upright more is a sort of tilt training, but scaled down. Instead of going from sitting to standing. Maybe put an extra pillow under you so your up a tiny bit more. see if you can get used to that. Then, when you are ready prop up another pillow and so on. I don't know how effective it is but I'm trying it for myself. I spend most of my days in a recliner.

I believe it is but I don't know for sure. You can learn more about EDS and look for a dr on. EDNF.org

And Dr Levine's response http://heartdisease.about.com/b/2012/03/08/the-pots-controversy-continued-dr-levine-responds.htm

I know there are some people that aren't super bendy have EDS. But they usually do have a Beighton over 5. If you wonder about EDS you probably want to find a knowledgable geneticist. When my dr referred my I was prepared to have all the tests but the geneticist felt he had enough other evidence that he didn't need to do blood tests or biopsies. I don't have any physical signs of type 4 (which is the most dangerous) and would be found on a biopsy. He told me there are over 30 genes EDS can be on and each lab only tears 3-4 so truly tracking down the gene, if ever, can be difficult. All that to say and experienced geneticist can look at your history and give you a better idea of whether or not you need a biopsy I hope biofeedback is helpful for you. Keep us posted

My mind races with a lot of ideas, too. When I focus on the fact that I can't do them I get sad. I've been trying lately to keep track of every little increae and improvement I have, taking time to be thankful and feel proud. So I feel like I'm doing something. Its so easy to forget how much we do because it doesn't keep up with other. I saw a picture with a cat lying on the floor and it said "I may look like I'm doing nothing but on a cellular level I'm very busy." That's us potsies

Have you ever tried some slow, deep, diaghragmatic breathing? It may help calm, relax, and help you feel slightly better in some ways

Im so sorry cfmartin. I know how hard it is. I go through times like this as well....like just the other day. I'm glad you were approved for SSD and hope that you can get the help that you need. As far as pt, can you try simple exercises in bed? Just a leg lift every so often and then a few days later 2 leg lifts. Or isometrics. Start super small and gradually add. You are so strong and I know you can get through this, just by the fact that you're still taking care of your baby AND doing other things. What kinds of crafts have you been doing? Allow yourself to feel your pain and then reassess and go forward. I think we all need those times to just let if all out. It seems to reset us.

It's not an easy situation, that's for sure. I don't know a lot about it but I know in some cases they use nerve stimulators on the bladder.

On jen I feel for you. I really don't have an answer. I know- and I really only know what my mom told me about when I was little- is that my bladder didn't empty all the way either. I had to take a med to help it along, it was something like Detrol? Has your dr given you a med for it? Also have you tried depends on the depends pads for when you do have a problem? It'd keep your clothes clean. I also took antibiotics consistently for a while in hopes of stopping them before the start I do hope you can find an easier solution than a catheter.

Yay frugalmama! I got out some old yarn & a hook today You make a whole hat in one day?! You must be fast

I saw this article today and thought it was really great: http://heartdisease.about.com/b/2012/03/05/pots-whos-the-real-grinch.htm

Yeah, it can make your wrists hurt. I have carpal tunnel so I have braces to wear where when i do things that hurt.

Hope, I'm probably going to try crocheting again! It may take an adjustment to get used too before I can do it a lot. That always happens to me. I used to crochet and wanted to do it all the time but I never had the energy to do crochet marathons. Then I got bored and stopped...think it time to try again. Lemons- I sleep 9-10 hours and STILL wish I could sleep more. Puppylove- I've drawn some, not that good at it and it takes concentration. I watch a lot of tv too and have gotten bored with that too

When I was a little girl, I had chronic UTI's. I would be on the hopsital for weeks at a time. They had to put me on prophalatic antibiotics and they found the I had a double collection system & something didn't develop correctly on my stomach. I grew out of them when I was around 6 and have only had sporadic ones. It always seemed to be a freak thing bit when I saw a geneticist a month ago he took that into consideration for diagnosing EDS.

Does anyone know why the simplest, most sedentary things like reading and typing are exhausting? What's the least exhausting activity you can do? I've been thinking about getting back into knitting or crocheting since I read this article http://www.knitonthenet.com/issue4/features/therapeuticknitting/ But I'm assume that's just as tiring

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