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whitneypaige

Meeting everyone and having the friends I do now because of this illness has helped me more than anything. I mean, my meds help Razz

but nothing is like knowing you are NOT alone. Because in the beginning, when I didn't know anyone with this, I wanted to honestly die. I felt so alone and nobody understood me.

Just to know I have friends that have turned into my family that understand me on a level nobody else could possibly understand...that has helped ME tremendously!

I think just searching for others who feel alone, reaching out to others who don't know anyone else with this, and talking to eachother about what we go through can help. As a dysautonomia patient, it's helped me so much.

I may feel like I'm dying sometimes but despite those pains and feelings, I'm HAPPY. And it's because of you guys.

I think if I didn't know those I have met, I wouldn't be able to get out of bed as often as I do. To know I am not alone has been such a big help.

Also, by recommending medications that others are on and bringing it up to our doctors (which I have done and some meds helped and some didn't but it's trial and error with all meds anyway so anything is worth a try!) - that could help patients physically, possibly. Trying medications we haven't tried before.

Also, spreading awareness as much as possible so others aren't so ignorant to this illness! That is major in my eyes. It helps me when people finally understand it and don't shove it under the rug and ask the same questions over and over when if they only took the chance to read about it *I make pamphlets and I have my own website so that people around here can learn about it...and some do and others just don't take the time* and take the tools I give them to learn about it....it would help me so much because it drains me to repeat myself over and over. Sad

It would just be a big help if the awareness keeps spreading like it's doing! I think we're all doing the best we can to spread awareness and we just have to keep at it! Smile

Eventually, Dysautonomia will be just as known about as other illnesses. I just know it will. And I cannot wait for that day so I won't be so drained from repeating myself to people. But I totally don't mind repeating it, I guess if I have to drill it into their heads..that's what I'll do, you know?

I pray the more people get educated about this and what we go through, the more it will be studied, and the more people will pitch in to donate money to the Dysautonomia Foundation to help them find a cure for us. Or donating to other Dysautonomia causes like DREAMS, DYNAkids, ETC...just to spread the awareness and things like that! Smile

But as long as I have my friends, excuse me, FAMILY Smile

that's the biggest help I've ever recieved. I wouldn't be able to make it without you all!

I know there are probably other ways to help people with Dysautonomia but this is just what has really helped me the most. Very Happy

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Whitney Paige

Dysautonomia, Mitral Valve Prolapse, SVT, Fibromyalgia, Non-Epileptic Seizures, Acid Reflux Disease, Chronic Constipation, Insomnia, Sleep Paralysis, and much more!

Nicole · Joined: 25 Oct 2007 Posts: 19 Location: Gulfport, MS

Amen girl. I am sure a lot of feel the same way you do. I love spreading awareness and having the support of others that have the same illness as I do.

You are so articulate. You have sumed up everything for me. Very Happy

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*Nicole*
POTS, SVT,atrial tachycardia, chronic fatigue, insomnia, NCS, low potassium, lower esophageal rings, IBS, gastroparesis, insomnia, fibromyalgia, and others

Have a blessed and wonderful day!!!! HUGS and LOVE

whitneypaige · Posted: Wed Dec 12, 2007 3:27 pm Post subject:

Aw, you are so great Nicole! Love you bunches!
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Whitney Paige

Dysautonomia, Mitral Valve Prolapse, SVT, Fibromyalgia, Non-Epileptic Seizures, Acid Reflux Disease, Chronic Constipation, Insomnia, Sleep Paralysis, and much more!