MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
So, the insurance co wants me to talk to a phone nurse to improve my health. I did this about 10 years ago with a poor result but they were insistent so I tried again.
First, she asked me if I had congestive heart failure. I said no, I have never had that. She wonders why that is on my records. I told her I had cardiomyopthy but not CHF. She says they are the same thing so I explain the difference to her.
She askes me if I have any other health problems so I say I have an autoimmune disease. Which one? So I tell her bout my journey in autoimmune land. Then she says, so they dont know if you have this or not? AAAAAGGGHHHH. Yes, I am being treated with daily medrol. Oh so you do have it? Which one? Again I tell her about the positive ANA and RNP which are currently negative. And get nowhere.
She asks if there are any health questions I have. I tell her I am on a heart monitor and the Dr wants to implant one. So, she asks if it is a defibrillator and I say no it is a heart monitor. Oh! a pacemeker? No, a monitor. So I tell her about it and she says she never heard of it.
On to my arrhythmias because she wants to know why I am wearing a monitor. I tell her about my history, the previous monitors and the EP study and say that they could not really tell exactly where the rapid rate was coming from so thought I had MAT or multifocal atrial tachycardia. Which she never heard of.
She then asks about my immunizations and paps, mammograms, dexa scans, and colonoscopies. Up to date.
Then I tell her about my meds, She keeps interrupting because she thinks I should be done but the list goes on and on.
She asks about the antibiotic I am taking and I tell her about my bladder issues and I will see a urologist next month. I tell her I probably have interstitial cystitis and ask about a copy of the diet for that. She has to research that. Think I will get a copy off the internet as she will probably never come through at the rate this is going. She asks why I thing I have that. So I go into my history of Hunners bladder lesions, previous history, pain, infections, toilets full of blood, ect. She says, oh.
It goes on and on and on.
So, it ends and she says this program can really help me. Hmmmmmm. Not much help so far.
Have you had any experience with programs like this and have they helped you?
Mary Ann
First, she asked me if I had congestive heart failure. I said no, I have never had that. She wonders why that is on my records. I told her I had cardiomyopthy but not CHF. She says they are the same thing so I explain the difference to her.
She askes me if I have any other health problems so I say I have an autoimmune disease. Which one? So I tell her bout my journey in autoimmune land. Then she says, so they dont know if you have this or not? AAAAAGGGHHHH. Yes, I am being treated with daily medrol. Oh so you do have it? Which one? Again I tell her about the positive ANA and RNP which are currently negative. And get nowhere.
She asks if there are any health questions I have. I tell her I am on a heart monitor and the Dr wants to implant one. So, she asks if it is a defibrillator and I say no it is a heart monitor. Oh! a pacemeker? No, a monitor. So I tell her about it and she says she never heard of it.
On to my arrhythmias because she wants to know why I am wearing a monitor. I tell her about my history, the previous monitors and the EP study and say that they could not really tell exactly where the rapid rate was coming from so thought I had MAT or multifocal atrial tachycardia. Which she never heard of.
She then asks about my immunizations and paps, mammograms, dexa scans, and colonoscopies. Up to date.
Then I tell her about my meds, She keeps interrupting because she thinks I should be done but the list goes on and on.
She asks about the antibiotic I am taking and I tell her about my bladder issues and I will see a urologist next month. I tell her I probably have interstitial cystitis and ask about a copy of the diet for that. She has to research that. Think I will get a copy off the internet as she will probably never come through at the rate this is going. She asks why I thing I have that. So I go into my history of Hunners bladder lesions, previous history, pain, infections, toilets full of blood, ect. She says, oh.
It goes on and on and on.
So, it ends and she says this program can really help me. Hmmmmmm. Not much help so far.
Have you had any experience with programs like this and have they helped you?
Mary Ann
Beth
I wish you all the best and hopefully "things" get better from now on and please keep us updated.
I do keep my fingers crossed for you and wish you all the best from Kristina.
It sounds like some kind of "evidence-based" (e.g. time and resource vampire) health care intervention. Meaning someone did some ridiculous analysis that 'proved' that this kind of screening saves money and time, when it actually wastes it.
Health care is moving in many directions at once. Some new developments in "managed" care actually have improved treatment, but most do not.
Any new screening instrument involving a list of questions? That's a red flag. It's probably junk.
Your time is valuable. You are a nurse with decades of experience, you know more than this person does. I would-- and do-- trust your opinion more than most of the "advice nurses" I have had to deal with.
Obedience is futile. Resistance is not.
Mary Ann
Idiots.
Mary Ann