What was your journey to getting a diagnosis like? 

Actually, my journey to diagnosis was fairly short of duration, as I was diagnosed within a few weeks.  The trial has come in finding after care.

What is your biggest struggle with Dysautonomia (parenting/school/work/etc..)?

My biggest struggle with all of my health problems combined is eating, as my body does not accept food or nutrition of any kind without some sort of negative reaction.  I also struggle with “attacks” throughout the day, episodes of high bp, tach, flushing, sweating, diarrhea, etc., which make it nearly impossible to have a normal life.

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​What are your top three treatments that help you function daily?  Hydrocortisone, antihistamines and an elemental formula.

Who has inspired you most on your journey? Why? 

Numerous people have inspired me along my journey. It would be hard to choose just one.  But, I guess if I had to, it would be Patrice.  I met Patrice at Mayo Clinic in Rochester in the fall of 2006. Patrice was undergoing treatment for a recurrence of breast cancer.  She had a 15% chance of living.  As sick as Patrice was, she was more concerned with everyone around her. 

Patrice and I met one day in the lobby of my hotel.  As I was at Mayo by myself and was in need of someone to collect me after a scope procedure, otherwise I couldn’t have this important test, I had to depend on those around me--strangers.  Patrice volunteered to be responsible for me.  After my scope, I was wheeled into the waiting area, and there she was, as promised.  She took me to my hotel, where she was also staying in another  room, and stayed with me through the night, making sure I was okay, since we all know POTS patients have a hard time recovering from procedures. 

After that, Patrice took me under her wing, driving me to the grocery since I had no car, spending time with me since I was all alone.  Not only was Patrice looking out for me, but she spent time at the VA playing cards with the patients, time with other Mayo patients trying to lend a hand to them, and time on the phone keeping in contact with so many friends and loved ones. 

One day, Patrice and I were in a deli having lunch.  Patrice was eating organic foods from the deli, while I was eating baby food I had brought with me.  By this time, my GI system was refusing nearly all foods and I was down to 89 pounds on a 5’4” frame.  I will never forget the following conversation that took place in the middle of this deli:

Patrice:  “I feel so sorry for you, Linda.”
Me:  “Patrice, you’re dying.  Why would you feel sorry for me?”
Patrice:  “Because I at least know what I’m battling.  You don’t.”

Patrice was right.  I knew I had POTS, but I also knew there was so much more that was unknown that was causing my quick decline in health.  But, even with this fact, I still was blown away that this person, who was dying, was saddened for me, not for herself, but for me. 

Patrice and I parted after three weeks together.  During that time, I learned what real courage is.  While I watched my new friend suffer the ill effects of radiation and chemotherapy, I saw her continue to look out for others, giving a little less than she did when she first arrived, but still giving her all. 

I never heard from Patrice again.  I’ve often wondered what happened to her.  Deep down, I know, but I still hold onto the thought that her light still shines for others who need such an angel in their corner, like I needed when she entered me life.

I wish I could tell Patrice, one day, how much her strength meant to me, and how she influenced my behavior now as I struggle with illness and continue to see others around me struggle.  Each time I see someone in need, I think of Patrice and how she gave what she had, through her own struggles, to help any way she could.  That’s how I’ve tried to be.  I don’t think I’ll ever be as graceful or selfless as I witnessed Patrice to be, but I certainly hope I can give back to others to repay a bit of what Patrice gave to me.

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What would you like to say to the public at large about your situation and Dysautonomia?

Dysautonomia is a disorder that not only reeks havoc on sufferers’ physical health, but it ruins quality of life, as well.  Too many times have I heard my fellow POTsies relay their pain regarding not only having to live with this unpredictable, scary and devastating illness, but also how family and friends have walked away from them because the POTsie can no longer participate in “normal, healthy” life.  We who have Dysautonomia are changed.  We cannot physically, and many times, mentally function the way we used to. But, we are still us.  We like the same things we used to.  We may not be able to participate in them, but we still like them.  We may not be able to go to the movies with you, but we can watch a video with you at home.  We may not be able to accompany you on a shopping excursion, but we can shop with you on the computer.  We may not be able to play one on one with you on the basketball court, but we can play one on one on a Yahtzee board. Yes, we’re a bit different, limited, but please don’t think we’re no longer valuable in your life.  We can still laugh, cry and share with you.  And, with having to live every day dealing with a chronic illness, we can probably sympathize with your pain better than we ever could.  Don’t give up on us.  We are still valuable people who have many things to give and so want to be able to.  We have limitations, so we ask that you recognize and respect those, but don’t forget to include us in life.  We’re waiting for it

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What advice would you give to a newly diagnosed patient?

Find yourself a doctor who knows about your condition, not just what it is but the ins and outs of it, respects your individual symptoms, believes you, and whom you have a good communication relationship with.  Learn all you can about it yourself, learn your own triggers, limitations and what is most helpful to you.  And, finally, get into a support group. I belong to three on-line support groups for POTS, two for Addison’s and one for mast cell.  I would not be here if it weren’t for the knowledge and support of the wonderful people I have met who are suffering with the same ills I am.