Hi there, @susanfantini, my name is Jane. My name on here is Mamacita, and I volunteer as a mentor in several groups.
I have been retired for three years, early retirement. My many conditions had deteriorated to the point that I needed a cane or walker to get around.
My pride would not let me, however. The previous year I served at a middle school, where teachers and students alike thought I was exaggerating my symptoms. So I suffered in silence.
The past three years,I have learned a lot about living with pain, pills, treatments, and surgeries. I have lost a few friends and family who were brought up thinking that there are always immediate, perfect answers to invisible illnesses. When good health is a work in progress, some friends lack the determination to support and encourage us.
Here where I live the opioid epidemic is so terrible, even the patients who register a 15 on a scale of one to ten for pain levels, are denied effective treatment. Most doctors around here have to be talked with deeply, seriously, and at length, to get even close to the proper treatment for pain.
Many have to be convinced of our sincerity. No one deserves that kind of treatment. Which is why I am here. I am just one of many who meet up here on Mayo Clinic to share our stories, information, and hope.
We are better together. We will always be better together. We are strong when we know that someone is there for us. Someone who has had experiences and has lived through what we have been through.
After many years of floundering, I am happier than I ever have been. Here I can be heard. And helped. Here I feel encouraged and supported. I can hear about what works for some. Maybe one particular way won't work for me. But maybe this one will?
We are
not medical practioners. We cannot give medical advice. We always say to run it by your PCP before trying any new supplement, diet, or procedure. They will know if your requests go against any of your medications or not.
I, too, have had multiple surgeries, which did appear to work for awhile. I have had treatments that last for months for everyone else. But only a day for me. As the youngsters say, "The struggle is real." But you are not alone. I am here, dropping in as often as possible. There are some wonderful Volunteers you will meet. And friendly patients who have been where you are.
Thank you so, so much for visiting here. And for sharing your story. I hope I get the opportunity to "talk" with you very soon! Have a wonderful day and take good care of you!
Mamacita
Thanks for your comment.....now how as a group can we get our voices where it matters????