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Thread: Soft Palate involvement.

  1. #11
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    Alysia, I think you are right to expect good care from docs, because that is the way it should be, and you are right to get mad at them when they neglect or don't listen to you. I think Don and Keith were just stating, unfortunately, the way it is, so many docs do fall short in how they follow through with patients' cases. I think the sad fact is they just can't or won't devote the time necessary to treat patients the way they should be treated. There are some docs who are exceptions, and those of us who find them are lucky. That's the way it seems to me, anyway.
    Anne, dx'ed April 2011

  2. #12
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    Ann,you nailed it,and thank you.I am pretty laconic,and may leave the wrong impression sometimes.Alysia,I am sorry I upset you.I think we expect doctors to be different than other professions,and that is a false expectation.There are good ones and not so good ones.I had not read Barbara's Hello from Spain,until now.Sorry again.
    "You can tame anything,except the human tongue"

  3. #13
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    I understand your irritation for not getting the proper attention to your latest unpredictable Wegener's damage. I really believe that evener the best of Wegener's docs are really surprised sometimes by what can show up on us next. I know mine always seems to 2nd guess me when I tell her something new that I feel is related, it really doesn't set well with me either, and she is supposed to be one of the best. I just really hope that they find a very restorative treatment for your palate involvement. Please keep us informed on your condition, take care of yourself.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  4. #14
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    Dear Keith. No need to be sorry. You sure did not upset me. Sorry if I did. I sensed the irony in your words but was not sure, also about Don's words. I just cant accept peacefully those neglecting docs... when I was getting angry at the hospital at some of them, Phil used to say (with his cute smile) : "whew, I am glad you are by my side... "
    P.s. I sent you pm yesterday as well. Hope you got it.
    Last edited by Alysia; 03-10-2016 at 04:07 PM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #15
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    Jana,it must be a great comfort for you to have such a prestigious doctor.I will let you know how this plays out.I might end up blowing some money,and going back to the Mayo Clinic if this situation moves to slowly.Nice seeing you.
    "You can tame anything,except the human tongue"

  6. #16
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    Alysia,Phil was lucky to have you at his side.We know you to be tenderhearted ,and tolerant.You can be a force to be reckoned with,if the need arises.It would not have surprised me had you been escorted out of that hospital by security guards.Thank you for the P.M. P.S. your English is great.Wish mine was that good.
    "You can tame anything,except the human tongue"

  7. #17
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    Quote Originally Posted by annekat View Post
    Alysia, I think you are right to expect good care from docs, because that is the way it should be, and you are right to get mad at them when they neglect or don't listen to you. I think Don and Keith were just stating, unfortunately, the way it is, so many docs do fall short in how they follow through with patients' cases. I think the sad fact is they just can't or won't devote the time necessary to treat patients the way they should be treated. There are some docs who are exceptions, and those of us who find them are lucky. That's the way it seems to me, anyway.
    I think sometimes we need to replace those doctors that don't seem to have the expertise or motivation to give us the care we need to trust them and feel comfortable that it right for us. Sometimes there can be a difference in philosophy of care or prefered goals and approach to our health issues. It also behooves us at times to seek us additional consultation and second opinions at times with our doctors blessing, or without it if necessary, when we have disconcerting symptoms. It is our responsibility to try get the best health care we can within our healthcare system. When we have a good history with a doctor we trust and have to replace them, it can be a stressful event. I replaced one yesterday and will see some other new ones soon to get their opinion on a new symptom.
    Last edited by drz; 03-11-2016 at 02:17 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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