Share a story for #GivingTuesday

[edriscoll]

#GivingTuesday is an international day that was started to bring attention to nonprofits and their causes; an international day of charitable giving.  DINET relies on donations, big and small and all are important and greatly appreciated.  But just as important to DINET's effectiveness are the stories that we all share about our journey, our experiences with this disorder and the people who help us along the way.  

In honor of #GivingTuesday, please share a story about how DINET or a person you met through DINET has helped you along the way.

I will start with mine.  When it was first suggested that I may have something called "autonomic dysfunction", I began searching for anything that I could find on the  subject.  That was my introduction to DINET and many other organizations with a LOT of medical information.  I was frightened, very ill and very overwhelmed.  I read, printed, memorized and shared the information from all of the sites.  I was now well informed but still just as frightened,  ill and overwhelmed.  And then something changed.  I sent an email to DINET asking a question about information found on the site.  I expected to wait a while and then receive a followup email with links to more information or a medical answer to my question.  What I received was a personal email from a DINET volunteer.  Her email gave me the medical answer and links that I needed and so much more. At a time when I was being shuffled from one lab test to another, one appointment after another, I frequently wondered if anyone remembered my name.  But this DINET volunteer took the time to share some of the common experiences dysautonomia patients have.  She wrote me and asked questions about how I was managing.  She encouraged me to join the forum and to continue to reach out to other people sharing similar experiences.  Through the forum and discussions with other members, I was no longer isolated and I was better understood.  It was that personal one-on-one communication that I so badly needed and that made all the difference to me.  I joined the forum and sometimes just reading something that someone else wrote was enough to help ease my own struggle.   

I became a volunteer for DINET not long after joining and I try to be that "voice" on the other side of the email or message whenever I have the opportunity.  As important as the knowledge and education offered has been to managing my illness, I will be forever grateful for the personal touch and experiences shared by the volunteers and DINET members.   

That's my story...now it's your turn. 

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Ways to donate - https://www.paypal.com/us/fundraiser/charity/1552351   shop - smile.amazon.com (select Dysautonomia Information Network)  or check out the many other ways - https://www.paypal.com/us/fundraiser/charity/1552351     

[Pistol]

My POTS journey was a lonely one, since no one knew what was wrong with me at first. After years of seeing numerous physicians, several tests, facing disability issues and loosing my job and endless hours spent online researching my symptoms the only people I had to help me face this monster were my PCP and my autonomic specialist. I felt lonely and depressed, especially since there was no other person I knew that felt like me, even my friends and family could not really understand what I was going through. 

Then one day I came across Dinet and the rest is history - I finally belonged!!! No words can describe the relief that I felt simply by being understood, believed and validated. All the frustrating and odd things that come with dysautonomia and that had separated me from others suddenly were "normal"!!! Just sharing what it is like was as if a burden was taken off my shoulders, and slowly I realized that I not only can gain from the Forum but also am able to give back!!! 

Today I am a moderator on this wonderful forum and have made many friends as well as knowing there is always someone here that gets it - even if the issues are strange, difficult or painful to talk about. I can weather the saddest moments, celebrate the smallest victories as well as laugh about the funny things we encounter in the daily struggle of living with POTS. And that is a wonderful thing. 

Whether donating time, money or simply sharing your story - it is all appreciated!!!!!!!!!!

[MomtoGiuliana]

I also felt lonely and scared with severe disabling symptoms and no diagnosis, back in 2002 while pregnant and then with even worse symptoms post partum.  Multiple ER visits and multiple specialists and finally hospitalization I was diagnosed with POTS.  Even with all my internet research I never came across this diagnosis as a possibility.  Until I was diagnosed by an EP I was told I had depression and anxiety, and was brushed off by doctors who couldn't seem to grasp the extent of my physical disability.  It was a frightening time, during a time of life that should be full of joy.

I promptly discovered DINET after my diagnosis.  Even in 2002/2003 the site was full of information and members and administrators were so kind, understanding and helpful as I navigated acceptance of my diagnosis/physical limitations and treatment.  As I recovered (basically fully recovered 4 years later) I felt a strong need to give back to the organization that gave me so much information and support when I was in need.  I hated the thought of anyone else needlessly suffering through months of severe and frightening symptoms with no diagnosis except mental illness.

It's almost 2020 and I believe a lot has changed since my diagnosis thankfully.  There is so much more information available on line AND doctors are much more aware, in general, of the condition and how severe it can be.  But I still feel strongly that DINET plays an important role for patients and their caregivers, as there is always new information, new research and there is always a need for support, as diagnosis and treatment is still far from perfect.  It is my hope that the work I provide as an administrator of the forum helps others with this diagnosis to better navigate healing/recovery/lifestyle modifications and to feel much less alone.