I’m a mom and chronic illness warrior and advocate. I am a WEGO Patient Leader, Gastroparesis and Feeding Tube Advocate.
I was diagnosed with Dysautonomia in March 2013. I began having problems with my heart rate being too high and seizure like activity as a result of the high heart rate as a teen. I started becoming extremely tired in May 2011 having problems with my heart rate being even higher, especially during physical activity. I saw an Electrophysiologist and was told I had Sinus Nodal Re-entrant Tachycardia. I had my first cardiac ablation January 2012, it did not work. I then had my second one Feb. 2012, and a pacemaker was implanted. I became very ill after that, and started deteriorating rapidly. My dizzy spells got worse, the pain and weakness in my legs and arms also worsened. All that was done was to increase the medication I was on to lower my heart rate, which was still too high. I had a third ablation in October 2012.
After that, it’s like my body turned on itself. Walking became very difficult for me. I finally saw a neurologist and she was amazing. In February I went to Johns Hopkins for an MRI, and also to see an Electrophysiologist there. We were told I did not have SNRT, but NeuroCardiogenic Syncope, which explained the dizziness upon standing. This diagnosis led to autonomic testing, which revealed I have Dysautonomia. I suffered because no one thought to check anything else. In May 2014 my POTS diagnosis was confirmed by mt EP in Northern Virginia. He decided to try me on saline Iv therapy to see if that helped with the POTs issues and my hypovolemia. As a result in June 2014, I had my picc line inserted. Which didn’t last too long, as it became infected and caused a septic infection. Thus, it was removed. In 2015 I had a portacath placed, and in January 2019, it was changed out for a new one.
I have many problems as a result of the dysautonomia, but I refuse to let it bring me down. I use a walker if going some where that requires extensive walking.
I’ve been Diagnosed with:
- Dysautonomia- POTS/IST/NCS
- Small Fiber Neuropathy
- Thin Basement Membrane Disease
- COL4A4- Truncated Mutation
Though through this all, I’ve had the love and support of my friends and family. They have given me strength when i’ve needed it. This disease doesn’t make me less of a person, I believe it has made me a stronger person. I know I’m a good person, I know this doesn’t take away from that. It is my hope that through educating others on our daily struggles, and exactly what this disease does, we can help each other. I hope to create a community of amazing individuals that are facing chronic illness, or are a caregiver/spouse of someone with.