Five years, 60 months, 260 weeks, 1825 days, 43800 hours…
It is so hard to believe I’ve been fighting countless health problems for 5 years now. My first diagnosis was Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). Dystonia, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome (EDS/JHS), dysautonomia/orthostatic hypotension/vasovagal syncope, asthma, seizures, migraines with aura, irritable syndrome and other undiagnosed GI issues, fibromyalgia, myofascial pain syndrome, SI joint dysfunction, peripheral neuropathy, chronic tension, chronic idiopathic uticaria (CIU), and a neuroautoimmune condition resembling stiff person syndrome, which has vocal cord dysfunction (VCD) associated with it. Of course, I have had the hearing loss since birth and it is completely unrelated to all the other conditions. With this many conditions, symptoms often overlap. The biggest challenge for me thus far is managing symptoms on a day-to-day basis. For example, in order to keep my dysautonomia under control, I have to exercise. However, exercising is painful because of my hypermobility and when the hypermobility flares up, the CRPS flares up, which can exacerbate any one of my conditions.
If I completely lost you with my long medical terms,that’s okay. It is overwhelming and for many of the conditions, not much is even known.
June 26th, 2012, while on a mission trip in Farmington, Michigan, I injured my finger while scraping a metal chair and a few hours later, I injured it again when a ball came flying at me and I jammed it. My dad opted to wait a while to see if it would get any better and when it didn’t, we went to ER for x-rays, which ended up showing a subluxed DIP joint (fingertip). I went to surgeon the following week and the rest is history.
The irony of this is that it happened during a mission trip and the fact that I had just gotten back from the Notre Dame Vision Conference, which gave me a great sense of peace. The Notre Dame campus is absolutely incredible and I truly believe that the stuff that I learned that week is what has carried me through the last five years.
I’ll end on this note: my life is definitely not perfect, but it is perfect for me.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!