Growing up, I have always had issues. However, I was taught my issues were “normal”… so I assumed that everyone else went through the same thing too.It would take almost forty years for me to begin getting answers, and they haven’t stopped coming yet.
It was actually by accident that my journey to my answers even began. After my neurologist ordered some MRIs to rule out a pinched nerve, we learned that I in fact have Chiari Malformation. It was actually my very knowledgeable Chiari specialist/neurosurgeon who recommended I see a geneticist, to get tested for vascular Ehlers-Danlos syndrome (vEDS) and other types of Ehlers-Danlos syndrome (EDS) (due to my family history of sudden cardiac arrest and my Beighton score). Once I had recovered from brain surgery, I was able to find a geneticist. I was officially diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS).
Because I had been suffering from unexplained and progressive weight loss, we eventually learned that my hEDS caused dumping syndrome. However, after a repeat test recently, we found out that my dumping has now progressed into gastroparesis. I have also been diagnosed with Postural tachycardia syndrome (POTS) and other co-morbidities.
EDS is both a taker and a giver. I have lost energy, time, friends, and even family. However, I have gained so much as well. I am a much stronger person and more patient. It is giving me so much wisdom, and I am learning to find the humor in my struggle at times.
The two most important people in my life are my spouse and best friend of over twenty-five years, and the beautiful daughter we have raised together. They are my biggest supporters and although I am invisible to the world, they make sure to make me feel very visible and loved. They are the reason that I keep fighting.
This has been the most challenging part of my life, and I have been through different serious traumas throughout my life (including a near-death experience).Many people do not even care to ask me what it is like to live with EDS. Most people have not even heard of it.
My journey is far from over. The doctor appointments and tests will never end, and I do not doubt there are more diagnoses to come. I am just taking it one day at a time.
