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Thread: Now I'm getting angry

  1. #11
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    My main question is are you seeing a Rheumatologist. Its good to see doctor's that treat the area's that have been affected. But I am a firm believe in a rheumy. As this is a autoimmune disease. That is their area of specialty. <even if some aren't not quite qualified for it.> A good Rheumy will go a long way working with your other specialists if you are not seeing one now.

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    I have had numerous horrible experiences with Dr.'s that don't know a thing about Wg. I have gotten to the point where if they seem like they don't know what they are talking about, I demand another Dr. My life span is too short to spend it in appointments half the time. Or just waiting for someone who can treat me. It also makes me angry when they tell me I should feel a certain way, when I don't. WG affects the lungs, kidneys, joints, bowels, sinus, and the vascular system. Any soft tissue. That Dr. seems to not care. My advice is find better care. Look into people who have treated the disease before. Even if you have to drive further away, good care is worth it! You matter, don't let anyone convince you otherwise. This disease is certainly manageable. I have reached almost 10 years and look forward to at least 20 more!
    Last edited by tigerleah23; 09-07-2014 at 08:07 AM.

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    Thanks Tigerleah.

    Ive always stupidly allowed drs their pedestal they feel they deserve to sit on. I've always given them respect until now. After going through hell with this disease and had so much contact with so many different drs, it has finally dawned on me that the medical system is full of undertrained, rude and arrogant people that are clearly there for the money and not for the patients well being.

    Many times since being diagnosed I've said to people I wish I had cancer. At least then I could expect quality treatment!!
    At least then the majority of drs have a fair understanding of the disease.

    A person suffering cancer would never have a dr ask them 'how do you know you have cancer?' or ignore symptoms or treat the patient for a different condition. Even the treatment for cancer, similar to the treatment we get, never would they allow a cancer sufferer to go through a year and a half of psychotic episodes due to medication and blame it on the patient.

    I dont know..........
    Having a rare disease is so hard.
    So isolating.

    When I was diagnosed I had no understanding of what to expect. When the dr held my hand firmly and told me I had WG he had a genuinely sorrowful look on his face. He was a very caring person. I thought I was in good hands until I was referred on and found the majority of medical trained people can't even treat a common cold let alone Wegener's Granulomatosis.

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    I would find another Specialist that is with a big office or hospital and keep pushing. My internal medicine Dr is great and understanding. I have been where you are with Dr's but truly there is one out there that knows how to deal with this. Have you went to an Internal medicine Dr yet? Believe it or not my ENT was the first to diagnose WG. Don't give up. Take it from someone who felt like you. It made my WG worse and in the long run, made more problems for me and several surgerys due to giving up.

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    Well, my wish has been granted. I've now been dx with bowel cancer. ��

    I really didn't mean literally 'I wish I had cancer'!!!!!!

    Oh well, me and my big mouth aye?

    A good friend of mine who has MS told me she thinks I'm just greedy ��

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    A golf acquaintance asked me how I was doing, asked if I had had a heart attack, common among us old farts! I told him, NO, I just wanted to be different than my other heart buddies...so I went and got an AI instead...much more attention and stupid questions associated with it! I love it! NOT!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  7. #17
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    All my working life I've been under the impression that if I work hard and save my money that one day when I turn 65 I can retire and enjoy some real life. Well I'm now 60 and I've worked hard all my life and saved a little and I now realise there is more to it than that.

    The missing ingredient is health!!

    I wonder how many people reach 65 without any serious health issues. Life is a bit like climbing Mount Everest. The first part is easy and the further you go it keeps getting harder and harder to the point where only a few reach the summit.

  8. #18
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    I was dxed 9 months after I retired (age 64+). First 14 months after that weren't too much fun. Since then, life is pretty good. Thanks to great docs and effective meds.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #19
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    That's good that it's under control Pete. You deserve to be able to enjoy your retirement. Stay well friend.

  10. #20
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    Quote Originally Posted by PJ2010 View Post
    Thanks Tigerleah.

    Ive always stupidly allowed drs their pedestal they feel they deserve to sit on. I've always given them respect until now. After going through hell with this disease and had so much contact with so many different drs, it has finally dawned on me that the medical system is full of undertrained, rude and arrogant people that are clearly there for the money and not for the patients well being.

    Many times since being diagnosed I've said to people I wish I had cancer. At least then I could expect quality treatment!!
    At least then the majority of drs have a fair understanding of the disease.

    A person suffering cancer would never have a dr ask them 'how do you know you have cancer?' or ignore symptoms or treat the patient for a different condition. Even the treatment for cancer, similar to the treatment we get, never would they allow a cancer sufferer to go through a year and a half of psychotic episodes due to medication and blame it on the patient.

    I dont know..........
    Having a rare disease is so hard.
    So isolating.

    When I was diagnosed I had no understanding of what to expect. When the dr held my hand firmly and told me I had WG he had a genuinely sorrowful look on his face. He was a very caring person. I thought I was in good hands until I was referred on and found the majority of medical trained people can't even treat a common cold let alone Wegener's Granulomatosis.
    PJ I have had Wegener's for 34years and counting. It can be treated I have had a 9 year healthy remission and an 11 year healthy remission. I did suffer greatly at the end of my 9 year I relapsed and started cytoxin again and in 11 months reached remission but found out I had bladder cancer then. Nonetheless I beat both!! I am about to start treatment though probably next week. I am having a flare after 11 years!!!!! I'm more worried about the toxic drugs than getting this in control. I am sorry you have had uninterested doctors for I have fired many myself. It's your life take control of it. Don't let yourself get more ill because they aren't doing their job. Find better, leave the area for treatment you won't regret it. Good luck to you.

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