Melach

Nina,

Have an AMAZING trip!!! We'll miss you . Merry Christmas and happy holidays to everyone else! By the way, is it snowing over there?

Ayelet

Katherine,

Happy anniversary! Wishing a wonderful and pots-free year! Thanks for all your contributions!

Mazel Tov ,

Ayelet

Amy,

It's very good that you got the endicronology appointment, maybe they'll really be able to help you. I've also had a lot of issues with weight loss, so let us know if they find anything interesting. Regardless, it's always important to check everything out. By the way, this shrink sounds like she's reallly doing her job, which is great! And of course your Washinton D.C. rendevouz sounds freezing, albeit fun.

B'Ahavah,

Ayelet

Sue,

I don't believe that there is an underlying cause for my pots, at least not one that doctors can find. I suppose that other disorders or diseases could cause the same symptoms if left untreated, but that's not really pots per se. Obviously I wish (as I'm sure everyone else does), that pots could easily be corrected. Maybe I'll ask my doctor some questions about this at my next appointment . Anyway, good luck!

B'Ahavah,

Ayelet

Ernie,

I may be mistaken, but I thought that orthostatic syncope is the kind of fainting people with dysautonomia experience. Also, there seem to be a lot of links between chronic fatigue/fibromyalgia and dysautonomia. Maybe this is one of them. I wish you the best of luck in your upcoming tests, and hope that they'll soon be able to give you a treatment for this.

B'Ahavah,

Ayelet

None of you have to answer this if it's a really stupid question, and the first word you learn in kindergarten, and what most dinner disscussions are on...but what is tempurpedic?

Sorry, just a little confused

Ayelet

I was only on a beta blocker for a short amount of time because it actually made my dizziness worse. However, I also experienced the sun sensitivity. Here in Israel the sun is also a problem, and in fact just the other month I had the same issue with an antibiotic. Everyone be careful!

Dr. Grubb,

Wishing you a speedy recovery, and the best of health in the future. It must be hard to suddenly be the patient! Refuah Shlema!

all the way from Israel,

Ayelet

Baruch dayan emet.

Oh, Morgan I am so terribly sorry for your loss. I'm sure Gene was a wonderful person, and he is lucky to have gone peacefully. This is all just so tragic, and you are very strong. Everyone is here to be a comfort for you during this time, so please don't hesitate to ask.

All of my love and condolenscense.

Ayelet

Tearose,

I second what everyone has already told you, and send wishes of a speedy recovery your way.

Have some chicken soup!

Ayelet

Nina, thanks for the easy to read explanation. I'm sure it'll help me understand future posts too because, unfortunately, so many people here seem to have similar problems. Again, I'm so sorry that you are in this much pain.

Ayelet

Merrill,

Oy! I'm sure you'll be fine, but your mishap just made me laugh. GOOD LUCK tomorrow with your MRI! They aren't fun, but I'm sure you'll be relieved to have it over with. I'll be thinking of you tomorrow! (And will of course be telepathically cheering you on ) Actually, it'll probably be night here so I'll just be dreaming those cheers...

B'Ahavah,

Ayelet

(I still can't even fathom having a doctors appt on a Saturday...weird!)

Mindylee,

How beautiful! This is really great. If you don't mind, I'd like to email this to a friend of mine stuck at home because of premature contractions. I'm sure it will really make her think, just like I did.

Thanks to you and your dad.

Ayelet

What a great article! Maybe if the writer gets enough pressure from potsys, she/the newspaper will be motivated enough to write more on the topic. Thank you so much for sharing this!

Ayelet

Nina,

Unfortunately, I don't understand exactly what you're saying medically. Whether it's because of my lack of english or medical terminology, I'm not sure. However, I very much hope that you're not in too much pain and that the test goes well. I'm crossing my fingers for you that the physical therapy and pain management are succesful and you soon begin to feel as healthy as you possibly can. It sounds like you have a wonderful doctor, so I'm confident that you're in the very best of hands to help you with this. Keep us updated, and if I don't have the chance to say it again before you leave, have an absolutely AMAZING holiday. (Ok, I'm still a little jealous )

B'Ahavah,

Ayelet

Emily,

I very much appreciate what you are saying; I also often just get too overwhelmed. It's incredibly difficult to balance time, and I doubt that anybody ever really learns the art. When I begin to divest a lot of my already sparse energy into any one thing, I always begin to question myself. I can tell that you're very much loved here, but occasional (when needed!) breaks won't hurt anyone. I also often get the EXACT same

just so much i want to do and a body that won't go! grrrr...

<{POST_SNAPBACK}>

feeling. My brain sometimes feels like it's in a different place than the rest of my body, and it's difficult. Luckily, this is the perfect place to express those feelings. Don't apologize for venting! I wish that I'd had a little more "been there, done that" people to vent to these past years. Again, I understand everything that you're saying, and hope better days (in every possible way) follow.

B'Ahavah,

Ayelet

Morgan,

I am so incredibly sorry and heartbroken about your friend. Of course I will pray that a miracle happens for him, and will keep both of you in my thoughts. I know that everyone will be here as a shoulder while you grieve. I'm not always good at articulating what I want to say, but I just hope you understand that my heart really goes out to you. I'm sure that his life was very much added to by the fact that he had you as such a wonderful friend. Please, ask if you want anything.

Refuah shlema bezrat hashem.

Ayelet

By the way, just out of curiousity what are hup and chop?

Ayelet

Angela and Katherine, I can very much relate to much of what you are saying. I think the biggest thing I have learned is what really is important in a day to day sort of way. Instead of being such a perfectionist and making sure that every little trivial thing is in place, I'm happy just being able to get to work or be with my kids.

The other big thing that pots has taught me is to be more accepting and aware of other people's disabilities and conditions. Even if I can't directly relate I am much more sympathetic and understanding of sickness than I used to be; even in strangers. Also, instead of being frightened (or worse, dismissive) of friends' or family's illnesses I like to think of myself as someone who can be a support.

Ayelet

The American Autonomic Society is having an "International Symposium on the

Autonomic Nervous System" next October 6-9th in Los Cabos, Mexico. I don't know how much of that is on dysautonomia or who can attend.

Here's the contact info:

16th International Symposium on the

Autonomic Nervous System

The Westin Resort & Spa Los Cabos

Los Cabos, Mexico

October 6-9, 2005

ORGANIZING COMMITTEE:

Horacio Kaufmann, M.D. (President)

Italo Biaggioni, M.D. (Secretary-Treasurer)

Sue Paxton

Anita Zeller

Sponsored by the American Autonomic Society

FOR INFORMATION CONTACT:

Anita Zeller

AAS Executive Secretary

18915 Inca Ave

Lakeville, MN 55044

Phone: 952-469-5837

Fax: 952-469-8424

E-mail: zeller.anita@mayo.edu

Web Site: www.americanautonomicsociety.org

Angela,

This must be very hard for you. Such change is always very emotional, but I'm sure it must be intensified by the fact that illness brought about this move. Try to keep your spirits high and do something for yourself (maybe in in NY? ). While dancing may not play as big a role in it, I'm sure that you will have a very bright future. Best of luck, and I hope that you start to feel a million times better.

My prayers are with you.

B'Ahavah,

Ayelet

P.S. Just think about how much you'll laugh about your first apartment ten years from now when you're sitting in your Park Ave. penthouse with all your friends, feeling in the best of health.

Sarina,

I'm glad you found a good doctor. Sometimes a good bed-side manner is equally important to medical knowledge. I do not know much about EKG's, nor am I an all-around expert like Morgan! I looked up the "long QT" and basically found out what Morgan just told you. It is a big cause of sudden infant death syndrome, but you're not an infant so obviously that's not something you have to worry about. While it can cause some more serious things, don't get yourself worked up about it. Interestingly enough, the medication prescribed to help prevent something serious are the same beta-blockers often prescribed for pots. So, who knows, maybe you'll just be able to kill two birds with one stone.

There seem to be about 20 different kinds of long QT's (sound familiar?) ranging from a rare congenital one being the most serious, to borderline readings which are usually benign. I'm sure you found all of this yourself, so sorry if this wasn't helpful at all.

B'Ahavah,

Ayelet

P.S. I don't know if you have any way of translating on your computer, but here are some of the sites I found just in case:

www.infomed.co.il/questions/q_081302_2.htm

www.heart.co.il/_Education/Long_QT.htm

http://www.kol.co.il/pub/showByCat.asp?catID=393

Briarrose and Ernie!

Thank you! My friend, Lara, has OI (Osteogenesis Imperfecta; had to look that spelling up ), which means that there is not enough collagen in her bones. Her bones break and fracture extremely easily, but from the outside she looks completely healthy. Even though she has had this since she was a child, she often finds it very difficult to face the world in a wheelchair. She is one of the smartest and kindest people I know, so it is just such a shame that some people make false presumptions about her. Ernie, even though it is for a different reason, your situation seems a lot like hers. I'm here if you want or need additional support with this.

B'Ahavah,

Ayelet

Nina,

Congratulations!!!! That is quite an accomplishment! So much work goes into getting a decree, so to manage it in spite of all your medical maladies makes it a hundred times more impressive. You may have mentioned it, but what are you studying?

In addition, HAPPY BIRTHDAY! As my father would say, now that you've made it through the first 3rd of your life, the fun can begin. I'm sure this is a vacation well earned, and Mexico is just gorgeous. Who are you going with? Make sure to take some pictures for us to see!

Adios ,

Ayelet

Ernie,

I need to post quickly because I need to get to work.

However, I must say I'm sorry about the rudeness you got from the store clerk. POTS is a pretty invisible illness, and some people aren't able to realize that you don't need to be crippled to be disabled or need a wheelchair. This is the kind of thing they should teach in school!

A good friend of mine is in a wheelchair, and I once took her shopping, only to find out how insensitive some people can be. When she stood to try on clothes (which she can do for a couple minutes) she got a nasty comment from another shopper and I just remember being so furious. Lara is a shoe fiend, and has a whole closet full of hundreds of shoes. While I wanted to punch the women, Lara laughed and told her that she didn't really need a wheelchair (and pointed to whatever designer shoe she had on that day) but she just didn't want to get her shoes dirty.

She's told me that some people will never get it, so you might as well have fun with them. I know I could never be that way, but I'll still never forget that day.

Good luck and congratulations on your degree. What an accomplishment!

B'Ahavah,

Ayelet