What was your journey to getting a diagnosis like?
My more obvious symptoms began to show in 2004, which was my first time leaving a job because of my symptoms.  I also got pregnant in 2004 and had a very debilitating pregnancy (preeclampsia and hyperemesis).  I was bedridden the entire pregnancy and had to give birth a month early;  the doctor was concerned about my health and explained that getting the baby out would get rid of the preeclampsia and hyperemesis—and he was right. 

 

Unfortunately, my original symptoms from 2004 began creeping up again.  On June 1st of 2006, I woke in the morning to find that I was blind in my left eye (I had and still do have 20/20 and have never worn glasses).  It took a year for the sight to return.  After extensive testing with no results, my neuro-ophthalmologist said that in the end what was ailing me would probably turn out to be Multiple Sclerosis or Lupus. 

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Between 2006 and 2008 I stayed home and raised my son.  In 2008, I found a job I loved but once again found myself struggling more and more with odd symptoms (pain, bone-crushing fatigue, near-fainting, blood pooling, brain fog, mini-strokes, jerks and tremors, blurred vision, inability to sweat—you get the point!).  It took a million and one doctors and tests and lots off failed emergency room visits to finally get the diagnosis from my gastroenterologist:  Dysautonomia with a possible Shy-Drager primary and POTS and Gastroparesis secondary.  Along that journey, I’d acquired a rheumatologist, hematologist, otolaryngologists, cardiologist and electrophysiologist who figured out the autoimmune and POTS issues. 

 

My journey to a diagnosis was horrible, even causing me to be illegally discharged from a job I loved.  It is now 2012 and I am struggling with progressive symptoms that I am told will ultimately lead to my demise.  Until then, I am yet another person living and trying to cope with Dysautonomias (an umbrella term for rare illnesses with even rarer opportunities for adequate funding for research)—but I am ever hopeful that one day all of that will change.

 

What is your biggest struggle with Dysautonomia?
Being a chronically ill single mom has been the biggest “internal” struggle.  Being given a child to tend to and to care for and nurture can make you feel less than adequate when you are bedridden and housebound or doctor-bound most of the time.  I have chosen to be open and honest with my now 7-year-old son (I’ve been progressively sick since he was two) about my illnesses, and I think it is very grounding for him not to have any surprises about what is going on.  He seems to appreciate being included and not left in the dark about my health, which has created such a strong and trusting bond between us.

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Is there a Dysautonomia success story you would like to share?
My doctor prescribing weekly intravenous saline infusions!
 

What are your top three treatments that help you function daily?
1.  Weekly saline infusions
2. Electrolyte Water
3. Loads of salt

Who has inspired you most on your journey?
All of my fellow-social-media-dysautonomics!

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What would you like to say to the public at large about your situation and dysautonomia?
The dysregulation of the autonomic nervous system (dysautonomia’s textbook definition) leads to very debilitating and life-altering states and it has no preferences as to whom it affects.

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What advice would you give to a newly diagnosed patient (or someone else in your position if you are not a patient)?
Trust your gut instincts about your symptoms.  Arm yourself with knowledge and people who are willing to learn about your illness (you may even find yourself teaching many of your doctors about it!).  Don’t expect others to be as concerned about your health as you are—you may find yourself on long waiting lists (6 months or more) to see the specialists you need most.  And most importantly, find fellow dysautonomics who will understand your issues from a been-there-and-done-that-and-still-living-that-story point-of-view; this support will prove to be invaluable while navigating the rough waters of the disjointed healthcare system.