As a 26-year-old working mother, all of life seemed in place. A rewarding job, a precious baby, and a supportive husband filled the hours and made for great memories. Days ticked away with the typical worries: when are the bills due, what’s for dinner, did I get enough pictures of the baby, and what’s happening this weekend? However, faster than a Missouri weather change, these “fun” times were put on ice shortly after a collapse in 2007 while I was shopping with my father.
The doctors seemed confused as to why my body was acting the way it was; high blood pressure and a high heart-rate, all while sitting calmly in the bed for over an hour. This wasn’t going to slow me down though. My husband had just been transferred by the military to a new installation and we were in the middle of moving to another state. I didn’t have time for this!
After moving, establishing new physicians, a few heart rhythm studies and additional trips to electrophysiologists, I was diagnosed with Inappropriate Sinus Tachycardia (IST). Over the next few years, I was prescribed multiple medications with no relief and only bad side effects. To further complicate things, doctors added diagnoses such as depression, anxiety, hypochondria and even attention-seeking tendencies. As a last resort, in 2011, I underwent a Sinus Node ablation. My condition worsened and I was determined by doctors and the state to be disabled. This couldn’t be my life!
In 2012, my diagnosis was changed to dysautonomia and postural orthostatic tachycardia syndrome (POTS). Dysautonomia, which refers to a broad group of disorders affecting the autonomic nervous system, is not rare, but often goes undiagnosed. The new labels brought a whole new level of understanding and still some confusion as to why I was experiencing the many symptoms I had. I learned new tidbits: 25% of patients are unable to get relief through traditional treatments; sinus ablations are the worst thing you can do if you have POTS; and most importantly, I learned that I wasn’t alone. I even joined a local support group for patients like, and my husband and I attended regular meetings.
What I found was most people I met had never heard of dysautonomia or POTS. I knew there was more to be done and I had to be the catalyst to make sure it didn’t take six years to diagnose the next “Me.” In hopes of better understanding, I sought care at the Cleveland Clinic and even visited a top specialist, Dr. Grubb, in Toledo, Ohio. He shot me straight, and said there wasn’t much that could be done– I was one of “those” patients waiting on further research. One of his “sickos,” he laughed, as I appreciated his forwardness. I finally had a reason to put my frantic research at-ease and come to terms with it. This alone had brought content and peace to my life that I thought was lost.
I continued to work closely with my local support group leaders and advocate for awareness annually in their regional conferences, designed to educate patients, family, friends and the medical field about POTS and dysautonomia. I must say, our team does a great job and has brought light to such a shadowed community. Although the advocacy felt great, I knew there was more I could do.
I wanted to start fundraising years ago to push the research in our community… all my ideas and best efforts fell on deaf ears or maybe raised $30 here and there. My sweet daughter even started a lemonade stand at our annual garage sale! Information booth and all, her six-year-old determination produced $30, certainly a million in her eyes. We both were so proud to drop it in the mailbox!
I even had a friend who sells Plunder Design Jewelry ask me to join her team. At first, I was a hard NO! Being a self-proclaimed jewelry freak, I had to reconsider and quickly fell in love with the products. Then it dawned on me, “Hey, I’ll do my own fundraising!” Plunder had personalized pieces that I could make and use for that purpose. So now, with almost a year under my belt, I have started on that journey. I may not be able to “get better”, but I can still help! The dysautonomia community is my passion and I’m “ALL IN” with supporting the cause.
I currently suffer from a wide spectrum of conditions often associated with dysautonomia. I have syncope/light-headedness, gastroparesis, fatigue, unspecified connective tissue disorders, generalized pain, migraines and lax joints… all of which are coupled with pain, weakness, tachycardia, blood pressure fluctuations and pooling. The “brain fog” and fatigue are the hardest for me to deal with because I used to be razor-sharp and full of energy.
I struggle a lot in day-to-day life, but I’ve uncovered so many strengths that drive me to do more. It’s about tweaking treatments repeatedly and not expecting the “world” out of it. Just a little relief can make a difference. It’s about helping others better understand they aren’t alone and even though it may take time, things will get better! I’ve been able to share my story and have others relate to it, to include family members desperately seeking help for their loved ones. I feel fulfilled by doing this and there is still so much more I CAN do! I find my passion in helping others, advocating, fundraising and spending as much of my good days with my children and husband as I can. I’ve come a LONG way from how I used to feel, and do my best to not judge myself.
If you would like to join me in continuing the support, advocacy and advancements in fighting dysautonomia, please visit the following link.
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Interested in learning more about dysautonomia? Check out our partners, the Dysautonomia Advocacy Foundation.