Re: teresa & dr patient relationships & trust

[Guest guest]

Dear , I have started to write you back three different times now and cant get my words together right to reply. I hope this time goes better. I am sorry that you have had to go through what you have, it's these kinds of experiences with dx and trying to get treatment that have me so i dont know - twisted and tangled up for all of us right now - but also so down right angry and resentful for myself right now. I dont think I ever felt angry about any of it until now, these past months, i also let it go or made excuses for the Drs involved. Oh its a weird symptom, or on odd thing to happen in neurosarc., or oh they arent really taught much about ns or sarcoidosis even in med school, so cant blame them. and on and on. but honestly remarks like i dont care if you can walk or not??? how is a patient supposed to recover from that? and

the more subtle things are even harder I think to let go of and trust other drs, the condensending attitudes, the weight comments, the subtle ignorance of particular complaints or requests for explanations. But how to balance being an educated patient with trusting them to do the right thing and trying to stand up for our basic rights is something i am really struggling with right now. Take care and God bless, i hope yoru care is in better hands now and going more smoothly, Kim I am at the point with Drs that I am ready to totally ignore my healthcare rather than have to swallow my pride and turn to these Drs, or risk asking them another question again and be ignored. And somewhere inside me there is this burning in me to just be heard by them and get my point across, to explain why I am feeling the way I do and feeling it so

strongly. Like they would care to hear it?! I go for my second Remicade treatment tomorrow, and I literally dread going because I do not want to deal with a single Dr. Well I will shut up for now, I am very tired. Kim, I haven't had the privilege of meeting you as of yet, but you can't put your trust completely to these people that say we are depressed or obese, etc. This is one of the hardest fights of my life, and I won't be dictated to as a child from any of them. We know more about out bodies than anyone of them, we know when we hurt and where and we know what is normal for us and what's not. I've been sick since 2001, November to be exact, I was sent home from work because I was incapable to perform my job as needed, but I was giving it my all. Fact was my all

wasn't good enough, I never got to go back to work from that day forward. I worked with all these doctors that knew me and knew my work ethics, so they knew something was wrong, very badly wrong. My first neurologist was a nit-wit of a doctor, he did a EEG on me and said I had something going on in my cervical spine (neck) the next time I saw him he didn't remember any problem, I felt like I was in the "Twilight Zone" and it kept getting worse and worse each visit. I was complaining I was having difficulty walking, and he had the nerve to say to me, with his back turned against me, "Ms , It does not concern me if you can walk or not." Well, beside the sudden urge to whack him in the back of the head with my purse. I calmly got up and shuffled to the front where the receptionist said he wanted to see me again in 6 weeks, I shook my head at her and said, " don't you make me any appointments" she had a puzzled look

on her face, I told her if I needed him I would call, which has not happened yet. Then, I got a bill from his office, I phoned them up and told them point blankly that "It didn't concern him that I couldn't walk, so this was their notice that I wasn't concerned that he got paid. I then was diagnoised with Neurosarcoidosis, with spinal cord involvement.. There are those good doctors out there we just have to becareful and know when we are dealing with an idiot or not...Its your life not theirs you fooling with. Sorry everyone for the lengthy message.. Hugz, t

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[Guest guest]

Well Kim, I tell ya, its like this. you can either continue fighting and educating your doctor's or you can say, I'm just not gonna be sick anymore, I can tell from experience that the second option doesn't work. So our only choice is to educate them as best we can. At least you're on Remicade and for some people that does wonders. So hang in there, and just take one day at a time. if you have a question for them, ask them.. What's the ole saying, "the squeaky wheel gets the oil,"

I absolutely know that my medical doctor hates to see me coming, with all that happened to me last month, I saw her last week and said to come back in 3 months. Well, I emailed her about my Blood level dropping again, and she said that a drop from 34 to 31 is not that abnormal but she didn't have any objections to check it when I come to another's doctors appointment, now let me remind you that the normal for a Hct is 37.. My hair is falling out by the handfuls, it's 5:17am and haven't been able to sleep... The thing is I won't be ignored by any means, if I see something that I don't understand I ask them, whether they like it or not, and for the most part, they all know I was a nurse so they talk to me as if they were talking to a nurse, which I appreciate. Now that brought up all that about the bone marrow and calcium and Vitamin D, I've got some issues that haven't been addressed to my satisfaction. So, I will start emailing my doctor's come Monday morning, if no answer by noon, I'll send them another.. lol What else do I have to do other than play Scrabble with some online friends and POGO.. lol

You know sweet we are literally in the fight of our lives, and I don't plan on losing the fight. I may be knocked down from time to time but when I recover just a bit I head back in..

You know it just hit me a few minutes ago, that I've been too sick to die at times since 2001, and my first hospitalization was last month.. Amazing...

Thanks for answering me back, and just keep moving along, just like the energizer bunny..

Hugz,

t

-- Re: teresa & dr patient relationships & trust

Dear ,

I have started to write you back three different times now and cant get my words together right to reply. I hope this time goes better. I am sorry that you have had to go through what you have, it's these kinds of experiences with dx and trying to get treatment that have me so i dont know - twisted and tangled up for all of us right now - but also so down right angry and resentful for myself right now. I dont think I ever felt angry about any of it until now, these past months, i also let it go or made excuses for the Drs involved. Oh its a weird symptom, or on odd thing to happen in neurosarc., or oh they arent really taught much about ns or sarcoidosis even in med school, so cant blame them. and on and on.

but honestly remarks like i dont care if you can walk or not??? how is a patient supposed to recover from that? and the more subtle things are even harder I think to let go of and trust other drs, the condensending attitudes, the weight comments, the subtle ignorance of particular complaints or requests for explanations.

But how to balance being an educated patient with trusting them to do the right thing and trying to stand up for our basic rights is something i am really struggling with right now.

Take care and God bless, i hope yoru care is in better hands now and going more smoothly,

Kim

I am at the point with Drs that I am ready to totally ignore my healthcare rather than have to swallow my pride and turn to these Drs, or risk asking them another question again and be ignored. And somewhere inside me there is this burning in me to just be heard by them and get my point across, to explain why I am feeling the way I do and feeling it so strongly. Like they would care to hear it?! I go for my second Remicade treatment tomorrow, and I literally dread going because I do not want to deal with a single Dr.

Well I will shut up for now, I am very tired.

Kim, I haven't had the privilege of meeting you as of yet, but you can't put your trust completely to these people that say we are depressed or obese, etc. This is one of the hardest fights of my life, and I won't be dictated to as a child from any of them. We know more about out bodies than anyone of them, we know when we hurt and where and we know what is normal for us and what's not.

I've been sick since 2001, November to be exact, I was sent home from work because I was incapable to perform my job as needed, but I was giving it my all. Fact was my all wasn't good enough, I never got to go back to work from that day forward. I worked with all these doctors that knew me and knew my work ethics, so they knew something was wrong, very badly wrong.

My first neurologist was a nit-wit of a doctor, he did a EEG on me and said I had something going on in my cervical spine (neck) the next time I saw him he didn't remember any problem, I felt like I was in the "Twilight Zone" and it kept getting worse and worse each visit. I was complaining I was having difficulty walking, and he had the nerve to say to me, with his back turned against me, "Ms , It does not concern me if you can walk or not." Well, beside the sudden urge to whack him in the back of the head with my purse. I calmly got up and shuffled to the front where the receptionist said he wanted to see me again in 6 weeks, I shook my head at her and said, " don't you make me any appointments" she had a puzzled look on her face, I told her if I needed him I would call, which has not happened yet. Then, I got a bill from his office, I phoned them up and told them point blankly that "It didn't concern him that I couldn't walk, so this was their notice that I wasn't concerned that he got paid.

I then was diagnoised with Neurosarcoidosis, with spinal cord involvement..

There are those good doctors out there we just have to becareful and know when we are dealing with an idiot or not...Its your life not theirs you fooling with.

Sorry everyone for the lengthy message..

Hugz,

t

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.