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

Love and POTS

I received this press release via email the other and thought I should share the news about this happy couple!  (I have made one or two edits to the original release but only to remove the gritty details on the contest and to calm down the sales pitch)  I think it is really great that these two have found joy and comfort in one another.   May their swoons be swoons of happiness and not fainting episodes from low blood volume!

In February of this year, Steuben, a crystal glass manufacturer in the US, held a sweepstakes contest where the entry winner with the most heartfelt sentiment would receive a fiery red crystal heart- Internal Flame heart, engraved with the sentiment personalized as an engraving.

Kyli Wolfson’s entry of “Our love is a song I want to hear every day,” won the vote and when the folks from Steuben asked for more of her story they learned she and her fianc√©, Dustin, suffered from Postural Orthostatic Tachycardia Syndrome. Dustin had said the words of comfort to Kyli during a night when she was particularly sick.

A condensed description of the disorder in the couple’s words is: excessive heart rate increments upon upright posture – meaning you feel faint when standing up – but that’s just part of it. Your heart races as if you’re running in place all the time. Research shows that a POTS patient’s quality of life is similar to that of a congestive heart failure or chronic obstructive pulmonary disease patient. Coping with this disorder requires some serious lifestyle adjustment, and still results in many hospital stays.

Remarking that they’d seen each other at their very worst, Kyli pointed out that they see every day as a date. She continued, “Whether we’re on a picnic or at the hospital, there’s always love between us and a reason to smile.”

Interestingly, although Dustin’s declaration to Kyli describes how many couples feel regardless of age or health, one of the symptoms of POTS this couple shares is an increased sensitivity to sound. When they met by chance, each traveling with separate groups of friends, they were often retreating for quiet time at the same intervals.

In Dustin’s words, “It’s not so much about music…the love is like the melody and the lyrics are how you show your love.”  The tune of his statement was fresh in Kyli’s mind when she made the winning entry to the crystal heart sweepstakes and in Dustin’s mind when he proposed soon thereafter. As the couple plans their April, 2012 ceremony, they will have the hand-engraved Internal Flame as a lasting symbol of their commitment.

Kyli summarized their struggle and triumph with POTS, “Life with chronic illness gets terrifying at times. It’s almost always hard, always a challenge and often very, very lonely. There are times when I feel like I’m stuck inside a house that’s crumbling to pieces…times when the rest of the world seems like it’s moving, moving, moving...and I’m stuck in the same place. But on nights like this one, sick and scared, I remember the blessings…big and small…that have come out of this illness of mine. And I’m grateful.”

About Steuben
Steuben is the premier crystal glass manufacturer in the United States, and the world’s finest maker of pure crystal (according to Steuben). Since the 1930s, Steuben has collaborated with some of the world’s most important artists, including Henri Matisse, Salvador Dali, and most recently Ross Bleckner.

2 comments:

  1. Love them!! Do you watch their you tube videos? That is how I made it through last summer!

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  2. Just caught wind of your blog and we figured we would post it to our Facebook page if that was alright with you. Kyli and Dustin are an inspiring couple that definitely captured our hearts.

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