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 illnesses.
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 what happened to me a few months ago. I have been in a very painful chronic regional pain syndrome (CRPS) flare for the last couple of weeks. It has rendered me essentially bedridden 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 then I decided I had no other choice but to head to the ER.
I’m not sure if you are familiar with CRPS, but according to News Medical, “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.’
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 if I could lay down, I was asked why I need to lay down if I only have pain in my cheek.
At this point I realized that I was not being taken 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 if 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 were, does that mean I don’t deserve treatment to ease my pain? I think she freaked out a little when I started to bawl. I told her about having Cushing’s (the obesity tumor) three 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.” Just another person looking for pills.
Screwed the moment I walked into a place where they refused to listen, and more importantly, refused to care.
I looked at her and smiled tightly. Later, I realized how I should have responded, “I have people that care for me. Good doctors and medical staff that fight for for me all of the time. Perhaps, you should find out a patient’s history before brushing them off. It doesn’t help anyone to be told their suffering would stop if they ‘just lose weight’ if you don’t have all of the information. And never, never tell anyone that they are out of hope.”
And that is exactly what I put into the letter that I sent to the hospital’s CEO after this experience.
After all, hope is sometimes all we have to cling to.
One of the first things healthcare students learn, and an important tenet of the Hippocratic Oath is “first do no harm.” Something we could all do better to remember.