Re: rose & everyone & dr patient relationships & trust

[Guest guest]

Oh, Kim - don't give up on doctors... I think it's kind of like when we first realize our parents are human, too, and we have to forgive them... and then, eventually, they become child-like and we have to nurture our parents.. I don't like them, either, at all. And now that I am able to read what all of you are going through, I finally have some real knowledge and experience to pull from and share with my doctors. The big dopes. Maybe they'll get better, too... One thing I don't like is hearing from them, "Well we can try this, if you want.." Don't get me wrong.. I want complete say in my care! But they ARE the trained professionals... you'd think they could better pinpoint what we need! Boobs. Complete boobs. I do have one BIG issue with one doctor who was my PCP when we lived in Rhode Island. To this day I have wanted to write the weasel-y

little you-know-what and tell him he is such a fraud! After couple of years of months and weeks and days of repeatedly showing up in his office with pains and weird stuff going on in my body, he looked me square in the eye, and told me in a defiantly rude voice that he really didn't think that there was anything he COULD do for me and that my problems were phsycological and he suggested that I seek psychiatric help. The you-know-what! I was SO humiliated that I stayed clear of doctors as much as possible after that. Now, in the past two years, I've learned that ALL of my symptoms back then - including this weird erythema nodosum I had - were ALL signs of neurosarcoidosis. And the little you-know-what missed every sign. (But I don't hold a grudge or anything! LOL!) I want to copy all of my MRI's, all of my test results and all of the medicines I have been on and send them in a lovely ribbon-bedecked envelope along with

a letter that tells him what I think of him and how he missed the boat right along and how he shouldn't be allowed to practice medicine anymore for the way he treated me back then... But you did see the key word in that last sentence, right? It's "practice." They aren't Gods - they're just men who are trying to help their fellow man. It's called a "practice" because they can't possibly know it all and get it all right all the time. But I have to wonder - with all this practice, why haven't they gotten it right yet? And since they haven't gotten it right after all these years, why are they still allowed to practice? I mean, in school, if you fail a test enough times, you fail. You're done. It hardly seems fair that they get special treatment - and tons of money, too! LOL!!! And you know what else bothers me? Why couldn't my friends and family who know more about me and my condition collect the health insurance money and co-pays while they practice figuring out how to help me? Only seems fair, doesn't it?! LOL! My doctors? Yes - they're nice hu-men. But they're also boobs whose egos, I honestly believe, are too swelled with pride to admit they can't help me and to allow me to move on to more qualified professionals. And they treat me like I'm stupid, Kim, so right there, I AM stupid for continuing in their care, I suppose. I look at the uphill battle every day and it looks just that much more bleak knowing I have to find a NEW doctor to climb with me... Yuck... But, it's time for me to move on...I know it is. And maybe they'll try harder for their next patient. And maybe they'll listen a little more closely

without judgment and ego and sarcasm and doubt to their next patient. I know there are wonderful doctors out there. And I know what we have is so rare that they just honestly don't have the answers. I'm willing to give it my best shot to find someone who will care better for me and my health. I won't take every word to heart, and I'll probably keep emailing all of you before believing what they say, too! Thank GOD for you, Kim, and everyone out there who suffer with this. I would never want this for any of you, surely you know that. I truly wish to GOD we'd all be miraculously cured, but it looks like this is just another cross we'll have to carry in life. But I'm so thankful that if we have to carry it, we can help each other bear the load. I will always be here for you, Kim, and for everyone else.

Always. Everyone is allowed to fall apart and get discouraged - it's ok. We have every right to be mad. Health has been stolen from us, and goobers who make lots of money don't care enough to really help... Dammit, that ticks me off! BUT together, we make the biggest difference in each others lives by helping to share the burden! Thank you for that! We'll get through this, I know we will! (Are you in Kuwait now? Is there anything I can send out to you in a care package? I'd love to do that!) Hugs, Jeannie K Alostaz wrote: Dear Rose & All, Reading through your reply to Jeannie has made me realize why it is so hard for me to turn my full faith and trust over to my Dr.s (whether I am here in Kuwait or in the U.S. or anywhere else), why I am also questioning their decisions, reading up on their decisions, on the meds, on the tests, trying so desperately to learn what I can about everything and stressing so much over it all. Why I can't be like other patients who have the ability to trust in the Dr.s decisions and advice. I use to have that ability, I was not always like this. I used to listen to the Dr and take my meds, walk away believing what they said whole heartedly. But what you say below about being told for 5 years there was nothing wrong with you, despite going to your family Dr who knew you well Im sure, is quite similiar to the way I became so leary of Drs now. Like so many , probably

all the members of this group, I saw Drs for things that were signs that something was seriously , seriously wrong for at least the two and half years prior to my diagnosis. They all told me i was working too hard and stressed. At one point I had severe, I mean severe I tell you,ankle pain and pain on the bottom of my feet, it was an isolated symptom i think, who knows, it was so severe i literally couldnt move or once i was up for a period of time i wouldnt dare think to sit back down the pain would get so unbearable. That d------- dr told me it was my weight!!! my wieght was 150 pounds at the time and i am 5' 5' now granted, i needed to lose a little weight, but i wasnt obese. she was about 40 pounds more than me , i remember telling her she was substantially heavier than me, did she have such horrid pain? she actually said to me that each body had its limits. i just left. that was about three and

half years or little more before my dx. gosh i remember that severe pain, it would come and go, stay for weeks then just disappear for long periods of time. it was excruciating. sometimes i go over the two years before dx as things got worse, the times i couldnt stand up straight, and the d---- ent just shrugging his shoulders at me.... telling me to get some rest. when i was so screwed up and the first times having colustrum when i wasnt nursing or having a pregnancy, but missing periods and so messed up, something was wrong i knew it..... i said maybe i was in menapause early?? the gynocologyst said hwo old are you?? early 30's? it cant be...... you are tired , you are working hard, get some rest....... i couldnt breath, i was exhausted, i hurt everywhere, something was wrong, i thought maybe diabetes..... they ran the tests for me.... all normal. they said no you are tired get some rest.... no one ever added all these visits up, until when? until i literally showed up unable to walk, stand, having severe neurologic deficits and disease. i remember this appt clearly with this dr, who said you were here a year ago, and yes you have been in the clinic to many specialists over the past two years complaining of the same things .... and then had the nerve to tell me after their exams over those few days he thought i had progressive degenerative neuro muscular disease and it was urgent i get out of the country for evaluation. but i believed them. i believed all these drs who said i was just stressed and tired and neded rest. i didnt really question them to be honest with you. and there are many many many more examples i could tell you of specific things overlooked before my dx. specific things crying out AUTOIMMUNE DISEASE IDIOT!!!!!! and over and over i hear stories the saem from one after the other of you ...... so its such a dilemna... the question of the day is this.. how do we get over this and learn to retrust our physicians? because we must. at the point of illness when we can not understand the tests and all they mean. when we are incapable of making decisions for ourselves, because we are simply to exhuasted or to sick, or do not understand it all etc,

we have to be able to let go and trust that our physicans know best and are in fact not idiots and are doing thier best for us, we have to believe in this, in our hearts, we have to feel safe in it. that they are looking out for us. but how do we? when its our lives or daily functioning or cognitive abilities etc that are in their hands, when it is honestly at hat level? not just an annoying cough anymore, or a small pain in the left pinky, but debilitating pain that will turn crippling if not stopped in its tracks perhaps, or a cough that will maybe lead to permenant lung damage. you get the point. how do we stop punishing our current drs for past drs failures, while still being intelligent consumers of health care and protecting our rights? how do you ensure you are

getting the best care without annoying the crap out of your dr, especially when you are dealing with an illness they do not know about and already feel inadequate about? how do you educate yourself about lab work and tests when they get to a point that its just not basic enough for you anymore to look it up on the net and get the simple info you need and your dr doesnt want to take the time to explain it to you any longer? or gives you such a trite answer even you have to laugh at it. and how in the world do we get over them having an attitude with us for actually having an attitude with them for treating us the way they do? because they studied medicine and have knowledge we dont, they are what? is that why they became drs? to help people get better, which has to include sharing their knowledge in simple terms or to hold thier knowledge to themselves and look down

upon the people begging for the help? sorry for the ranting, can you tell im feeling resentful? on the behalf of everyone, not just myself, everytime i read a post from one of you having these dx stories i become more and more furious and resentful, at the same time, more and more saddened for everyone. I tried to do some research on the Dr - patient relationship and found an okay link... it was from a lupus site, but it doesnt really answer my questions either. It was a starting point though. take care and dont give up kim ns moderator http://www.mtio.com/lupus/lal_20.htm I wish everyone the best and hold you all in my heart and prayers. Take care, Kim NS Moderator Jeannie, have you been tested for diabetes & hypothyroidism? Those could both cause weight gain. Wouldn't you like to just slap the doctor who tells you to "push through the pain?" This isn't just soreness from being out of shape. My family doctor told me 5 years ago that there wasn't anything wrong with me that an hour on the treadmill every day wouldn't fix! Moron. Unfortunately, most doctors know so little about sarcoidosis that they don't realize that it can affect every organ & system in your body & that you may have a lot of weird symptoms. I used to

feel like I had pieces of tape stuck to the bottom of my feet. At first it was just for a few minutes, in different spots. Eventually I had full-blown neuropathy in both feet, with numbness & severe pain. The tape feeling was the beginning of it. Now I also know that every weird or painful sensation I have is not necessarily sarc-related, but they should all be taken seriously & investigated. Good luck with finding a caring, knowledgeable doctor. Ramblin' Rose Moderator Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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