My primary CNP retired recently. She recommended a co-worker to me. I listened to her and scheduled with him. I know his other two Ehlers-Danlos patients and we talk, whether he knows it or not, whether he likes it or not. I misunderstood her regarding my pain medications. She gave me paper copies for August and September, but I was supposed to call in my refill for July. I completely misunderstood that, and I ran out.
I knew what would happen when I ran out. I tried not to panic. I made sure to e-mail my new provider about it and ask him if he could please refill my medications (as was his responsibility as my new provider). I apologized for the mistake I’d made as well. However, as of this writing, he hasn’t gotten back to me about this or my other medications. I do know I’m currently fighting a sinus infection that he knows about and was supposed to call an antibiotic in for on Friday. I also know I’m getting fairly regular fevers now and my fatigue is much worse than normal.
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lives of many Ehlers-Danlos patients.” data-reactid=”25″>I don’t know if he’ll allow me to use electronic filing for my non-opiate medications, but I know now that he will not electronically fill my opiate pain medications. Why? Honestly, I don’t know. I just know he refuses. I discovered this after I finally got home from my excursion, in a full pain flare, trying to get my medication refilled from my new provider who doesn’t seem to understand the reality of my life and the lives of many Ehlers-Danlos patients.
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he could have done something.” data-reactid=”43″>I have the complete urge to scream at my CNP. I feel like he doesn’t get it. I feel like he isn’t listening to us, his three EDS patients. He could have helped me prevent these subluxations. Yes, it was my fault that my medications ran out (I’m usually very meticulous). But the moment he found out, he could have done something.
When I got home, almost subluxing my right knee on the way up the stairs and my left ankle on my way in the door, I hobbled into my bedroom and angrily yelled. I wished he could see me right then. I wished he could have seen me on an x-ray right then. I know the rule: If you can’t pop it back in, get to the ER. I know that rule. Luckily, I was able to put things back today. My wrist is still subluxing randomly, but I have a hard brace thankfully.
I’m going to write a letter to him or sit down face-to-face with him to explain what this kind of pain does. If he is going to willingly treat EDS patients, he is going to need to do a better job of listening, and understand that he needs to treat us differently than he treats other patients. I cannot comprehend any provider refusing to act quickly to prevent pain, even if it means prescribing electronically. I can’t comprehend a provider thinking physical therapy is going to somehow cure body-wide pain caused by a genetic connective tissue disease. It is not. I can’t comprehend a provider saying they understand how complex and different EDS patients are, but then leaving them hanging when they need to communicate.
Ehlers-Danlos patients know this. Our providers need to as well.
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