Is anyone else frustrated with their health care provider and getting properly diagnosed and treated for Ehlers-Danlos Syndrome? I am and my frustration has hit a whole new level.
Today, I had an appointment with my nurse practitioner to get an updated note for my sick leave benefits and to get any test results or referral updates. First off, my nurse practitioner has absolutely no idea what Ehlers-Danlos is other than the definition she read on Google on my last visit and all she understands is it's a connective tissue disorder. She can't even spell it, today she had to ask me several times how to spell it while she was filling out requisitions.
I asked her if she received the assessment from the Physiotherapist. She was looking in her email and my file and could not find any report. I let her know it's possible it came under by married name and not my maiden name. She says if it came with a different last name she would not get it. My NP had to step out of the office for a minute. I was looking on her desk and saw a fax with my name on it from the Physiotherapist's office. I picked it up to look at it and it was the report from the Physiotherapist.
How much confidence can I have with my NP when she is not smart enough to think the report was for the same Elizabeth just because the last name was different? How many patients can she have with the Name Elizabeth going to Concept Movements with the same home address and phone #? My guess is none.
Next my NP, does not believe I have EDS, because my Rheumatoid Factor is high, she thinks I have Rheumatoid arthritis. I told her that the RF would be effected by EDS. I've shown her my floating knew caps, loose skin, scares, and she looks at me like a deer in the headlights.
In the last few months I have been losing a lot of weight. I have gone from 125-112 lbs in 3 months. I expressed my concern about the weight loss and she told me to eat. Once again her knowing 0 about EDS and that it can effect the bodies ability to absorb the calories and vitamins needed. Even though I eat, it goes right through me.
After 3 months of seeing her to try and get properly diagnosed and treated, I'm pretty much no further ahead. She has not prescribed anything for the inflammation or chronic pain, nothing to help with sleeping as I only get about 2-4 hours of sleep a night. She has not referred me to a Dr's who knows something about EDS.
I've done a lot of my own research to better understand the EDS and how I can better cope living with chronic pain and how to take care of my body to avoid injuries. I have never been one to take pills, especially pain killers like Percocet or Tylenol 3's. I never take anything stronger then extra strength Tylenol. The Tylenol only helped with headaches but does not for the wide spread body paid.
Recently I tried "edibles", I wasn't sure if I was high but the one thing I did notice was my shoulders were very relaxed and the pain had subsided quiet a bit. A friend of mine gave me some cannabis butter and I made some baked goods and candy and found they work better then any pain medication I've tried before. I'v posted a couple of my recipes and will continue to post edible recipes you can make at home. One nice thing about making your own edibles is you can adjust the dosage that works best for your pain or ailment. So far I've made banana bread, peanut butter cups, lollipops, caramels and gummy bears.
I would love to hear from you about the frustrations you face having EDS, or have tips or suggestions living with EDS and chronic pain.
Some images of my EDS.
Today, I had an appointment with my nurse practitioner to get an updated note for my sick leave benefits and to get any test results or referral updates. First off, my nurse practitioner has absolutely no idea what Ehlers-Danlos is other than the definition she read on Google on my last visit and all she understands is it's a connective tissue disorder. She can't even spell it, today she had to ask me several times how to spell it while she was filling out requisitions.
I asked her if she received the assessment from the Physiotherapist. She was looking in her email and my file and could not find any report. I let her know it's possible it came under by married name and not my maiden name. She says if it came with a different last name she would not get it. My NP had to step out of the office for a minute. I was looking on her desk and saw a fax with my name on it from the Physiotherapist's office. I picked it up to look at it and it was the report from the Physiotherapist.
How much confidence can I have with my NP when she is not smart enough to think the report was for the same Elizabeth just because the last name was different? How many patients can she have with the Name Elizabeth going to Concept Movements with the same home address and phone #? My guess is none.
Next my NP, does not believe I have EDS, because my Rheumatoid Factor is high, she thinks I have Rheumatoid arthritis. I told her that the RF would be effected by EDS. I've shown her my floating knew caps, loose skin, scares, and she looks at me like a deer in the headlights.
In the last few months I have been losing a lot of weight. I have gone from 125-112 lbs in 3 months. I expressed my concern about the weight loss and she told me to eat. Once again her knowing 0 about EDS and that it can effect the bodies ability to absorb the calories and vitamins needed. Even though I eat, it goes right through me.
After 3 months of seeing her to try and get properly diagnosed and treated, I'm pretty much no further ahead. She has not prescribed anything for the inflammation or chronic pain, nothing to help with sleeping as I only get about 2-4 hours of sleep a night. She has not referred me to a Dr's who knows something about EDS.
I've done a lot of my own research to better understand the EDS and how I can better cope living with chronic pain and how to take care of my body to avoid injuries. I have never been one to take pills, especially pain killers like Percocet or Tylenol 3's. I never take anything stronger then extra strength Tylenol. The Tylenol only helped with headaches but does not for the wide spread body paid.
Recently I tried "edibles", I wasn't sure if I was high but the one thing I did notice was my shoulders were very relaxed and the pain had subsided quiet a bit. A friend of mine gave me some cannabis butter and I made some baked goods and candy and found they work better then any pain medication I've tried before. I'v posted a couple of my recipes and will continue to post edible recipes you can make at home. One nice thing about making your own edibles is you can adjust the dosage that works best for your pain or ailment. So far I've made banana bread, peanut butter cups, lollipops, caramels and gummy bears.
I would love to hear from you about the frustrations you face having EDS, or have tips or suggestions living with EDS and chronic pain.
Some images of my EDS.
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