SunsetParadise49

Thank you all for your replies...they really help boost my self esteem!

Thanks Ernie, I sent you an PM.

Sorry I haven't been around lately but I'm just not doing well. I'm frustrated, sad, and getting discouraged which I haven't been in quite a while. I wound up in the hospital Monday night, and got sent home last night because my insurance supposedly wouldn't pay for another day....Dr. Poole thinks the doctor made that up because he thinks my issues are psychological.

My blood pressure has still been low while laying down, I can sit on the edge of my bed for half an hour and still feel like passing out (or do actually pass out) on my way to the bathroom or wherever I need to go. My heart races while I'm laying down too and will FINALLY calm down but once I move even the slightest bit, it starts racing again.

I feel so sick, I'm drinking (Pedialyte) like I should be but it's making me nauseous....but I keep on drinking anyway because I tell myself I need to even though I know it won't help me that much.

I just don't know what to do anymore. Med's don't work, increasing my medications makes my heart rate rise which I don't need as it's high enough already.

We're trying to find another Endocrinologist as the one I went to was a nut case and just talked about himself and hardly about me except to say he doesn't think I have Addison's.

I really need cheered up, this is the one time when I wish I had friends to come and see me, to send me a card or call me up just to let me vent or cry.

I haven't felt this lost, confused, and scared for two years. I had been doing well, staying strong and believing in myself, but I'm loosing that. My mom believes me and is concerned about me, I know Dr. Poole believes me and that is such a relief but still I'm hurt....the doctor in the hospital discharged me saying, "just eat pickles."

Thanks for listening and I hope it all makes sense!

Morgan, I'm so sorry to hear of the lost of your furbaby. (((((hugs)))))

Congratulations, Maxine!!!!!

Happy Birthday!!!

Thank you Kristen!!! I got the book in the mail today.

Oh my word has he ever grown! He's huge Nina! He's a very handsome kitty!!

How cute!!!

AWW How cute!!!!!

It took me a good two weeks I would say to get used to Cymbalta.

Thank you everyone. So far I'm doing well with Abilify and I haven't had any noticeable side effects.

Sorry I haven't been. Was it prescribed for POTS symptoms? Just curious if that is also used?

I hope you have good luck with it!

No, it's for Bipolar disorder. I was just diagnosed with Bipolar today so we're trying it out.

Today I was prescribed Abilify. My doctor has me on a low dose (2mg) as it can cause low blood pressure and high heart rate. I'm just wondering if any of you have taken it and what your experiences have been.

Thanks!

Welcome to DINET Kendra!

I hope you feel better soon Tessa!!!

I took ballet and jazz before I got really sick, so dancing was a huge part of my life. I voted yes, but not very long because I can dance a teeny bit when I'm having a good day. Sometimes even though I feel terrible (health wise) I will put on some music and dance especially if I'm emotionally having a bad day...it helps me feel better mentally even though physically I end up crashing.

Happy Belated Birthday, Nina!!!! Thank you for everything you do for us!!

I don't wake up with sever nausea but once in a while I'll wake up and just know something isn't right. I don't feel well and I it's a very hard feeling to describe. Eventually the sever nausea sets in and I end up throwing up...for me, it's usually my GERD acting up or a bug or something.

I hope you feel better.

I have edited the names and the name of my high school, but here's the article! It's a little different then I expected but it's still awareness! He didn't put in DYNA's or DINET's link, I told him too but he must have forgotten or something.

Enjoy!

Seeing her way through an invisible illness

By Jeff H., Staff

Intelligencer Journal

Published: Nov 08, 2007 2:05 AM EST

LANCASTER COUNTY, Pa. - Sitting cross-legged on a love seat in her family's living room, Gwendolyn W., 19, tells me stories of a happy, normal childhood ? school, pets, ballet recitals, flute lessons ? all prelude to a bewildering health crisis that daily challenges her to find happiness in a life taking a detour from the normal.

One moment Gwendolyn was participating in gym class at PMHS. The next she was on the floor surrounded by classmates who saw her buckle and faint for no discernible reason.

That was three years ago, and since then Gwendolyn has learned more than she ever wanted about the capriciousness of health and the limits of medical science.

Doctors tell her something is wrong with the way her body regulates automatic functions such as digestion and blood pressure.

The problem is called dysautonomia, and for Gwendolyn it means dizziness, nausea, fainting and a heavy fatigue that counters her longing to be active like the dancer and marching band musician she was.

Battling tiredness

No procedure or pill can make her well. There's only hope time may lessen the symptoms. Mostly Gwendolyn is resigned to doing what she can and to not criticizing herself when her body refuses to do the things she wishes it would do.

Gwendolyn is an easygoing, soft-spoken, sandy-haired young woman who reads mysteries and listens to Keith Urban. During our conversation she's wearing a purple sweater and jeans.

When Molly, the family bulldog, leaps onto the love seat, Gwendolyn gives her a hearty welcome. But over the course of my visit, Gwendolyn tires. She reclines, wrapped in a comforter, her head on the armrest.

Gwendolyn tells me a good day is when she has enough energy to empty the dishwasher. A very good day is when she finishes the dishes and feels up to doing a load of laundry. Those tasks accomplished, she knows she'll need a nap.

More frequent than the very good days are times when it's a struggle to get out of bed at all, much less hang laundry to dry.

Gwendolyn tried partial school days and a lightened load to finish high school, but what enabled her to get to graduation last spring was district approval of an in-home instructor.

Gwendolyn's illness comes with a frustrating double whammy. The first blow, of course, is being sick most of the time. The second is knowing some people doubt her illness and think less of her.

It's hard for her to explain an invisible illness. There's no skin lesion, no abnormal shadow on an X-ray, no brace she must wear.

Seeking acceptance

People wonder why Gwendolyn can't do more; some have even questioned her about it. Or they think they can make her feel better by speaking of their own tiredness.

"The main thing is she wants to be believed," said Gwendolyn's mother, Valerie, who has been a mainstay of support.

Cheering her on from halfway around the world is Sophie H., a young New Zealander who also lives with dysautonomia and who keeps in contact with Gwendolyn by instant messaging.

"She is really positive," H. said in an e-mail to me, "and also knows that it's good for me to ? vent sometimes and just let it all out."

Knowing she's not alone with her unusual illness helps Gwendolyn persevere.

She is looking into taking a class at Harrisburg Area Community College and seeing how it goes. Her dream: a nursing career.

This summer, Gwendolyn attended a conference in Virginia for young dysautonomia patients, and the highlight was the Dizzy Dinner Dance.

The music was low and the mood light, and no one thought twice when some chose to move to the Macarena while sitting on the floor.

Glad the interview went well. I bet it wore you out as well but thanks for sharing information.

Cool beans !!

Let us know if we can have a chance to read it.

LOL you can say that again! It did wear me out. I went straight to bed after he left and slept for 3 or 4 hours. I think it was more mentally tired then physically...he had SO many questions and I was getting all confused lol.

Hi Everyone!

The interview went great! He went through almost all of his new notebook taking notes lol!! Anyway, he wants the article to be a little different then I intended, but that is fine because he is still going to describe Dysaut. and put DYNA's and DINET's web addresses in.

To my understanding, he wants the reader to know what exactly it is like living through an invisible illness. He asked me pre-Dysaut. questions to the present. He was very thorough and I can't wait to see how it comes together in the end. I haven't heard when it will be printed but I'll defiantly post it.

YES! And it drives me nuts! Last Christmas, I went to my dad's parents for Christmas Lunch and while we were eating everyone was complaining about having a cold. I just sat there thinking, "what about me? I'm sick, and I'll probably be sick my entire life!" It made me so mad!! No one that day really asked me how I was doing healthwise.

A few weeks after that I emailed my grandmother and told her how upset I was about this. She replied that she didn't even notice it because she was busy running back and forth to the kitchen but that she was sorry they upset me.

Maybe the dr doesn't like the relative or maybe he didn't get approval from the network to air a story. I applaud you for your initiative in trying to increase publicity for dysautonomia. We are eagerly waiting to see the article!

I noticed that she also sent her response to my email (which my email to her was still there) to the production company so I think there's still hope. I can't believe tomorrow is the interview!! And I feel like crud today...I have a follow up appointment today with the family doctor so I am crossing my fingers it's not back to the hospital like last week!

My first thought is that maybe a relative was diagnosed with it, but this doctor thinks her relative is just a psych case.

I know that's a bad assumption, but how many of us have heard that?

Amy

Maybe. I know that a lot of times that happens until they find just the right doctor.