And after some 15 years of doctoring, has your health improved? This is what I cannot stomach about the medical system. You go into it with some medical issue and they want to keep you a patient for life never figuring out what to do to cure your ills. Hope you do find some solutions.
And after some 15 years of doctoring, has your health improved? This is what I cannot stomach about the medical system. You go into it with some medical issue and they want to keep you a patient for life never figuring out what to do to cure your ills. Hope you do find some solutions.
This is a bit of a loaded question. I was born with a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS) for which there is no “cure”. However, for me, this treatment is more physical therapy approaches and avoidance behaviors. I don’t even have an EDS specialist because frankly, one doesn’t exist. I have Dysautonomia/POTS which is very common to develop in those with EDS as it damages nerves and autonomic system. That damage unfortunately is permanent. I also have Mast Cell Activation Syndrome, again very common in those with EDS/POTS, and I also have Crohn’s disease. People like to use the word “cure” in disorders that will never go away but for the grace of God, but for which remission is definitely a more appropriate word and able to be achieved. It isn’t always achieved unfortunately but, you just keep working at it. I work more towards dealing with the root causes of my symptoms, food intolerances, chemicals, toxins, etc., not exposing myself to things that will flare my symptoms/disorders. The best I have been able to do is make sure my doctors understand that this is a two way street, they do not run the show and dictate what and or how I decide to treat things. I’ve been extremely disappointed with their COVID group think and lapse in help they’ve been for a mask related injury I had (long story), that’s where they are policy over patient but, for my disorders I’ve done mostly ok with my team on leading my care and working together for the most part as a team.
I am so sorry for your ills. I need to stop complaining. But, you are so astute. They have made you this way and you have great value to others because of what you go through on a daily basis. Wow. All the best to you. :)
And after some 15 years of doctoring, has your health improved? This is what I cannot stomach about the medical system. You go into it with some medical issue and they want to keep you a patient for life never figuring out what to do to cure your ills. Hope you do find some solutions.
This is a bit of a loaded question. I was born with a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS) for which there is no “cure”. However, for me, this treatment is more physical therapy approaches and avoidance behaviors. I don’t even have an EDS specialist because frankly, one doesn’t exist. I have Dysautonomia/POTS which is very common to develop in those with EDS as it damages nerves and autonomic system. That damage unfortunately is permanent. I also have Mast Cell Activation Syndrome, again very common in those with EDS/POTS, and I also have Crohn’s disease. People like to use the word “cure” in disorders that will never go away but for the grace of God, but for which remission is definitely a more appropriate word and able to be achieved. It isn’t always achieved unfortunately but, you just keep working at it. I work more towards dealing with the root causes of my symptoms, food intolerances, chemicals, toxins, etc., not exposing myself to things that will flare my symptoms/disorders. The best I have been able to do is make sure my doctors understand that this is a two way street, they do not run the show and dictate what and or how I decide to treat things. I’ve been extremely disappointed with their COVID group think and lapse in help they’ve been for a mask related injury I had (long story), that’s where they are policy over patient but, for my disorders I’ve done mostly ok with my team on leading my care and working together for the most part as a team.
I am so sorry for your ills. I need to stop complaining. But, you are so astute. They have made you this way and you have great value to others because of what you go through on a daily basis. Wow. All the best to you. :)