I am unsure where to begin, so much has changed since the last time I’ve posted. I have started college, moved into the dorms and most importantly I HAVE BEEN DIAGNOSED! After spending years in the world of the unknown and being told I was crazy and all in my head, I finally have found doctors and medical diagnosis to back me up. The road to finding answers hasn’t been easy, and I still have a long road ahead of me. I cannot express my thanks to Dr. Chelimsky (neurology), Dr. Zikos (primary), APNP Sara Galpa, Dr. Bjork (Gastroenterology), and Dr. Loomba (cardiology) and many many more doctors. I am so thankful to finally feel like I have a team of doctors supporting me and going above and beyond for me. Currently, I have been diagnosed with Hyper-adrenergic postural tachycardia syndrome, inappropriate sinus tachycardia, Autonomic neuropathy, Hypermobility syndrome, pelvic congestion syndrome, Irritable bowel syndrome, Vocal cord dysfunction, and Anxiety and depression. While the list of diagnoses is quite extensive and continually changing, it’s nice to have some a name to assign to my symptoms.

I continue to have extensive testing including blood work, MRI’s, ultrasounds, a colonoscopy, an EGD and who knows what else. With each test, comes some kind of new diagnosis or “incidental finding.” While I prefer not to add silly things like cysts and polyps and what not to my never ending list of problems, I continue to be thankful for how far I’ve come on my medical journey. I am waiting on seeing a geneticist to test for possible Elhers Danlos Syndrome  as well as waiting on the results of the two biopsy’s I had done during my colonoscopy and EGD.

Words cannot begin to describe how happy I am to have some answers, but as far as my health goes there is so much which is still undiagnosed. Like why are some of my liver enzymes continually elevated, and why am I having such terrible GI problems?

Dr. Chilimsky has started me on a “mito cocktail,” which is basically 10+ vitamins and supplements to hopefully aid in my symptoms especially my fatigue. At first, I was very apprehensive the idea of having to take over 20 medications a day in order to be “normal” was not ideal, but since starting this regiment along with many other medications I have seen a major increase in my energy and activity level. I have also started aquatic physical therapy with the hopes of being able to become active again. Dr. Chilimsky said that aquatic therapy would be the best for me since I won’t feel as many of my symptoms in the pool.

It’s hard for me to look back and remember the active energetic life I once lived, competing and dance and playing on the high school tennis team, and being able to go on long bike rides and hikes.  The idea that my body has failed me and that I am no longer physically capable to do the things I once loved is depressing, but my hope is that as I continue with physical therapy and all of my new medications and treatments, I may just be able to feel like a normal teenager again! It’s been so long since I’ve felt “normal” most of my senior year was spent in bed, or at doctors’ appointments. I had no social life, lost friendships, and couldn’t even make it through a whole day of school.

Meanwhile, most of the time I was able to spend in school was spent napping in the nurse’s office. I started college just a little over a week after my initial diagnosis. I was terrified that my medical problems would hold me back in my classes as well as creating friendships, but I was determined to make things work. I had no idea how my roommate would handle things like my constant lack of energy and insane amounts of medications, but I couldn’t have a better roommate and a more understanding group of friends than the people I have met here at school. While I still have my struggles and having all of my medical problems isn’t ideal I continue to be amazed by how much God has been doing in my life. Somehow among this mess of doctors’ appointments, procedures, medical testing, and who knows what else, I have been able to pass all of my classes and even have made honor roll and dean’s list!

Also, I can’t forget to thank my RUN family for the continual support, and I’m honored and thankful that I was able to be on the court with the Milwaukee Bucks for Rare disease day 2016!

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