I suppose I got too comfortable and maybe that compounded the problem. Not physically comfortable because that hasn’t happened in recent memory, but more comfortable with the vastness that begins to envelop you when you tangle with the medical-bureaucratic-beast that is the healthcare system when you have chronic illness(es).
I have a cadre of kind, knowledgeable doctors that I rely on and trust to guide me. But sometimes we must go beyond those boundaries, whether for additional comprehensive treatment or for situations that require emergency intervention.
So that brings us to yesterday, or last week for sake of a more complete picture. I have been in a very painful CRPS flare for the last couple of weeks. It has rendered me essentially bed ridden for the most part. And despite, increases in nerve medication, the pain remained, unabated, and I was told to go to urgent care. Trip one to urgent care was long but I got a few shots and the pain wavered for a day and a half. But, by the end of the week I was back at urgent care and this doctor did not feel comfortable giving me a similar course of treatment, instead she told me I might have better luck at the Emergency Room, so I left with slightly less pain but it came blazing back later that evening.
And yesterday I decided I had no other choice but to head to the ER.
I’m not sure if you are familiar with Complex Regional Pain Syndrome (CRPS) but according to medical net:
CRPS is widely considered to be the single worst source of pain—ranking higher on pain scales than childbirth, cancer and amputation. Yet the condition is rare and can be difficult to recognize.
In my case, the disease that lead to it, Trigeminal Neuralgia, is frequently referred to as the suicide disease because of its intensely, unremitting pain.
So that’s where we start.
Nothing unusual at the check-in, except a few bored administrative staff discussing donuts.
The real fun began when I was taken into an examination room to have a nurse take my vitals. When she reached for the blood pressure cuff, I asked that the reading be taken on my lower arm, due to hypersensitivity on my arms from fibromyalgia pain. She chose the moment that the blood pressure monitor was re-inflating around my arm to begin her spiel.
“You know I was diagnosed with fibromyalgia a few years ago but I refused to take any medicine. It’s just poison. I drink a lot of water and exercise (with this she looked me up and down, and repeated it) just a little exercise here and there. And with God’s help I am doing so much better.”
I am pretty sure my mouth fell open for a few seconds before I managed to squeak out: “well, I’m so glad that worked for you.”
So medicines equal poison and I need more God. Do I need to do yoga too? Because lots of people seem to think that will fix me. Thank you random check-in nurse, I’m healed.
I should have known that this visit was not going to get any better. Finally I was taken to an examination room and sat down in a chair. When I asked of I could lay down, I was asked why I need to lay down if I only have pain in my cheek.
Hmm, I don’t think they are taking me seriously. The doctor came in and asked what I wanted them to do. Um, take away the searing pain in my face so I can stop vomiting from nausea and do more than just lay in bed.
This was definitely going to be a case of treat ‘em, then street ‘em.
The final blow came when a second nurse came in with two shots for pain and my discharge papers. My father left the room and she proceeded to give me the shots then asked f i had any questions. I asked what they usually do for people with CRPS and she replied, “you just need to lose weight.”
Wait, what? My CRPS is caused by my weight? Um, nope and even if it was, does that mean I don’t deserve treatment to ease my suffering? I think she freaked out a little when I started to bawl. I told her about having Cushing’s (the obesity tumor) 3 times. Human growth deficiency, broken thyroid, a nonfunctioning pituitary gland and almost constant pain.
She looked alarmed and quietly responded, “I guess you’re screwed.”
Screwed the moment I walked in and was seen as just another fat girl.
Screwed the moment I walked into a place where they refused to listen and more importantly refused to care.
First do no harm. Something we could all do better to remember.
The story is not over. EMERGENCY ROOM REGRETS PART II