I wouldn't be surprised if my mother had post traumatic stress disorder (PTSD) after the events of this May. When she couldn't rouse me from my sleep just before we had to attend to some testing appointments at the Mayo Clinic, she knew something was wrong. I was found incontinent of urine and that meant something was very wrong. Some of the events I'm about to share are not meant to gross people out, but to highlight the severity of my medications and how they can be affected by my medical conditions. I was prescribed a single, non-narcotic painkiller for my Complex Regional Pain Syndrome (CRPS) and pain conditions. It worked extremely effectively in between IV treatments. That was one doctor. Another doctor had me maxed out on one muscle relaxer that I didn't think was really helping, over the FDA approved limit on another muscle relaxant (which was semi-helpful, but dangerous), and 44mg of benzodiazepines a day. Most people cannot tolerate 0.5 mg of the benzodiazepines and I was taking all of that combined plus an antidepressant for nerve pain. The one doctor who prescribed all the medication then decided that she wasn't going to see me anymore. Great, so now I'm in a wheelchair with an undiagnosed condition taking enough medication to stop 12 men from breathing. I had tested positive in my blood and cerebrospinal fluid (CSF) for an antibody most shouldn't have called GAD 65. People with diabetes or thyroiditis would have it, but I don't have either condition. This led us to fly to the Mayo Clinic to see the world's expert on stiff person syndrome (SPS).
So back to the morning of May 11th, 2016, when I was status epilepticus. My mom called 911 and they transported me to the ER where I had a 2 EEGs and a CT scan. After some tests, I was put on antibiotics, had a lumbar puncture, and was placed on a ventilator. Then I went into a coma in the neurotrauma ICU for 10 days.
Over those 10 days, my dad and brother drove from Pennsylvania to Minnesota, while they all prepared for my death. Doctors told them to expect me in a vegetative state at best.
After I was moved down to a lower unit, I started rehab and they continued monitoring me until I was sent home. Upon arriving home, I saw my PCP, who wrote scripts for physical therapy, occupational therapy, and neuropsychology. When I went to my first OT session, the therapist dismissed me almost immediately. I didn't need her services. I didn't require the services of a neuropsychologist and I only had to do PT for a pre-existing ankle injury. Success! The recovery was by no means easy, but hard work pays off!
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!