As a person with chronic illnesses, like many with chronic illnesses, I try to avoid the emergency room like the plague. It is so rare to have an experience where you get an empathetic and knowledgeable doctor to help you. Generally, when I actually end up in the ER, it is a true emergency.
Recently, I was sitting in my college criminal justice class when trouble struck. I had been feeling a bit more off than usual that day and I couldn't explain it. I pushed through the day. As my last class of the day was wrapping up in the last 15 minutes, my professor noticed I was getting uneasy, had a blue-gray tint to my complexion, was having muscle spasms that were jerking my limbs, and said I'd been unusually quiet. I am a frequent contributor to classroom discussions, so for me to go two hours of class without saying something is very atypical.
After class, he came up to me and said I didn't look too good. I said I didn't feel particularly well and that I wanted to get back to my apartment as soon as possible. He insisted that he call 911, as I was a bit short of breath and discolored. Because I haven't had good experiences with medics and ERs in the past, I tried to decline. He persisted and finally agreed that I should have a friend push my wheelchair the six blocks uphill to the ER. She dropped me off, and I guess I looked pretty awful because they took me back straightaway and the waiting room was packed.
My vitals were not surprisingly wacky (for me), but my oxygen saturation was low for me. Very low actually. As I continued to shake from violent muscle spasms with a tear here and there, the resident came in and asked a bunch of questions. He noticed that all the doctors had been writing the exact same thing over and over; suspected diagnosis: stiff person syndrome.
Not the best diagnosis, but not the worst either. If they all agreed, why wouldn't anyone diagnose? The short answer is that they had all only had 1 patient with the disease in their careers and we didn't present exactly the same. Shocker.
I was told to follow up with a neurologist ASAP, ideally between 1-2 weeks. I laughed, I've been trying to get a neurologist to get on my case and stay for 5 YEARS unsuccessfully. The man I really needed to see couldn't see me until February 2019, 2 years and 3 months away. That wouldn't work, not with respiratory compromise.
The resident and senior doctor were both astonished and speechless. "I don't know what to say...", the senior doctor started. "You don't have to say anything," I said "You treated me with compassion, like a human, and tried to help. While you didn't stop the problem, you definitely helped make my symptoms more bearable. My hope that someone somewhere will be able to help has been restored. That's probably the most important thing you've done for me in the last 8 hours.
All too often, the doctors that want to help can't and the doctors that potentially can help won't, continuing the vicious cycle of illness. These doctors were incredibly compassionate and wanted to help, but were oblivious as to how bad the medical system had failed me over the last 5 years.
To that resident and ER attending, thank you restoring my strength to continue fighting and searching for a diagnosis.
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!