For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Share Your Story about Living with Postural Orthostatic Tachycardia and Orthostatic Intolerance

Everyone who has POTS or OI or who has a loved one with POTS or OI has a very special story to tell.  Each of us have had challenges, successes, highs and lows in living with this condition.  Would you be prepared to share your story?

Why do I ask? I am working on a new website for people who suffer from POTS and OI.  Slowly but surely I have been compiling all kinds of research, news articles, and other information that may be helpful to people who are struggling to feel and to live better. (kinda like this potsrecovery.com blog but better organized...!)

What is missing from the new site are stories from real people like you.  I would like to post these stories, anonymously if you prefer, in a special section where we all can connect.

Would you like to contribute?  Are you ready to contribute?  If yes, send me a confidential email to liz@potsrecovery.com.  I will not post your story without your express permission.

Here are some suggestions on what you might want to include in your submission:

  • When did you first get ill
  • Did an event, illness, injury precede getting sick
  • Do you have any theories about what may have caused your illness
  • What are your symptoms
  • What is the most annoying, debilitating symptom
  • What treatment are you on, why?
  • What treatments have you tried, why?
  • Is there any treatment you would like to try
  • What has been your greatest challenge
  • What has been your greatest success
  • What does your future look like
  • Do you have any advice 
I hope you do decide to share and if you would like updates on the new website just say so in your email

-Liz

3 comments:

  1. So now that you're feeling better what are days like for you? Do you wake up not feeling well? Are activities hard to get through? What kinds of things are you able to do? What can't you do? Do you have to take rest breaks?

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  2. Do you have any advice for choosing a heart rate monitor? There are soo many out there with so many different features. I just don't know what I do and don't need!

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  3. How are you doing these days Elisabeth? Ive been working on legs lifts, since I am bedridden hoping to build enough endurance to start dr levines program. It's not easy but if I don't overdo it I'm getting a little stronger so I'm hopeful I'll get to a point I can push through his protocol!

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