I am writing today because I am scared. It’s been 23 days since my toenail removal surgery and 5 day inpatient stay at University of Virginia Hospital. I know what you are thinking… a toenail removal surgery? Seriously? 5 days in the hospital for a toenail removal? Yes..yes, I am being serious.
As you all know, I suffer from a disease called Complex Regional Pain Syndrome (CRPS). Sounds innocent right? Just a syndrome, just another “trash bag diagnosis” just another person in chronic pain. ( These are actually all comments that have been made to me.) Unfortunately for me, this is not “just another ____(fill in the blank)”, this disease is destroying me.
The back lash of this procedure has been a monster. The last 23 days have been spent mostly in bed…aside from the occasional day that I get up and try to go to my job, only to return home in excruciating pain in a few hours. I am so scared. So scared I am afraid that talking about it makes it true… Scared that my words written today will become my reality.
I can withstand a mountain of pain. My normal pain rating is a 7 or an 8. That’s where I live. That is where I function, go to work, talk to you, attend events and smile. Most people are in the Emergency Room at a 7 or an 8… I have never been to an Emergency Room because of CRPS. Until yesterday. Yesterday, I drove an hour to my job that I love where I help students with disabilities at a college. I worked 4 hours, attending meetings, emailing students, talking to professors about ADA compliance, meeting with students to help them advocate and help them get the accommodations that they need to be successful. After 4 hours, I crashed. I felt it as I sat in a co-workers office. The room started to spin, their voices and laughter circled around my body and stabbed at my nerves and I couldn’t stop the twitching in my face. My pain shot up to a 12… a 12 is where I want to pass out after getting sick. They never knew. I asked for a friend to push my wheelchair to my car and somehow I made it an hour home. I climbed upstairs to my bedroom and collapsed. I called my dad. I had to go to the ER. I sat in my bedroom screaming, shaking, crying… I am scared to death.
At the ER I told my dad I didn’t want to scare the children who were in the waiting room. I couldn’t stop shaking or crying. He wheeled me in the corner and I shook for an hour waiting for them to call my name. I finally asked him to take me home. I was drenched in sweat and needed to lie down. I knew at that point, I wouldn’t get the help I needed as I watched people who got there before me who were laughing and talking, walk past me in their “Emergency state”. There was no triage. The admission nurse didn’t even know what CRPS was.
I called my Pain Clinic, desperate for help. Did I need someone to drive me an hour and half to the UVA ER? What could I do? How was I supposed to breathe in this much pain? After leaving several messages, one clinic moved my nerve block up a day trying to accommodate me. The other clinic called and aggressively lectured me as if I were a criminal and then hung up on me.
I don’t want to go into details because my body cannot take the negativity of the situation. I have filed a grievance and written a letter that was distributed to patient advocate and the Doctor that I honestly love, who happens to be on vacation.
The point is that I was beyond the pain that a human can endure yesterday. I felt my nervous system crash and rebel against me. I don’t remember how I made it through those few hours. I just remember feeling afraid because no one on the planet could help me. No one understood. To have a rare disease that nobody knows about and then to not have support from the medical community should be a crime. Yet, I was being treated as the criminal.
I am not drug seeking.
I am seeking compassion and relief.
Meanwhile my CRPS is spreading… and I am so afraid.
Tomorrow morning,Thursday at 10:30 EST (if anyone wants to send me some healing energy) I will have a lumber sympathetic nerve block done. For those of you outside of the medical world, this is an injection in my spine that will hopefully block the pain and stop the spread of CRPS. It is the doctor’s goal to calm my nervous system and get me back to my baseline. These injections hurt like hell and I will spend the next few days in bed because of the pain in my spine. I am hoping that the doctors are right because this procedure has helped me before when I have been hurting. But I have never hurt this bad.
So I am scared. Scared of tomorrow. Scared of the procedure causing spreading, as it is risky. Scared that my CRPS is spreading. Scared of the life that may limit me. Sharing this is not usually something I would share but I feel compelled because I feel very isolated & I want others who are in this type of pain to know; you aren’t alone. I am here and I am scared too. I also want the medical community to know, we aren’t criminals. We are humans, who are in pain. We aren’t abusing the system, we aren’t selling our medications on the street corner. We are hoarding our meds, choosing if the pain is bad enough to take them…because tomorrow we may not get the support and pain interventions that we need.
Hopefully tomorrow will bring less pain for us all.