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Thread: Each time, the frustration gets worse

  1. #11
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    I agree with Anne and Mike. Get to your rheumy right away, and don't leave until they really diagnose the problem...

    Good luck!
    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

  2. #12
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    HI Nikki, please be good to yourself and put yourself FIRST! work and socialising come second when dealing with this disease. I dont understand the medical way of things in your country but struggle to comprehend how you can be left in the lurch like this. OK your chest scan came back clear, good news there but even if its flu/bronchitis then you must rest.
    I have learnt that taking to my bed is the best start. Keep strong and look after yourself.

  3. #13
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    I don't know you, but I wish I could reach through the screen and give you a hug! It sounds like you're going through a rough time. I hope that you soon find someone who listens to you and takes your symptoms seriously. In the meantime, we're here for you!

    "Drink your tea slowly and reverently, as if it is the axis on which the whole earth revolves—slowly, evenly, without rushing toward the future. Live the actual moment. Only this actual moment is life." -Thich Nhat Hanh

  4. #14
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    You said you had a chest xray and it was clear. But a CT scan would show much more. At my dx, the xray didn't show enough and the CT scan showed everything. So I hope your rheumy will order one as soon as you can see her. I think if the ER had been doing their job, they would have ordered one then and there instead of trying to pass it off on someone else.

    We all think it sounds like Wegs, but it could also be some dangerous infections or the flu, which must be treated. They should be able to take culture samples to see if it is any of those things. And of course, you need to have your blood looked at for WG and anything else that could be an issue, if you haven't just recently done that. Best wishes to you.
    Anne, dx'ed April 2011

  5. #15
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    Thanks everyone. This is why I absolutely love and adore this forum. I felt so alone and perhaps, a little crazy. But then, I see all these wonderful remarks and I am reminded that I am not alone. Not at all. I have all of you.

    I spoke briefly via email with my rheumy today. She wants me to change my diet again. I've been meaning to do this but have been very lazy about it. It's just easier to eat what's put in front of me. She also said she hoped that I was off work still. I told her that I wasn't. There wasn't anyone giving me any kind of direction other than shoving me out the door.

    I haven't heard back from her after letting her know that sinus rinses still bring me agony ... my ear is killing me, my nose feels like someone is raking the inside of it w/ a wire brush ... so ... yea, I still hate life. I'm hoping she checks back in before she goes home today.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  6. #16
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    Changing your diet might be a good thing, but it doesn't sound like what will fix this crisis you are in. I hope your rheumy starts realizing the seriousness of this, and soon!
    Anne, dx'ed April 2011

  7. #17
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    Quote Originally Posted by NikkiNicole View Post
    Thanks. I am exhausted. I am sitting here at work feeling like I can't breathe. I have made so many itty bitty mistakes. Not in my job ... no ... I'm always on top of that. But I sent out an email asking to get some hours covered on March 15,16 and 17. Yea .. I meant May. I even wrote them down on the sheet to let people sign up as March.
    I also kept saying the wrong thing when talking to my co-worker.
    I don't know what to do and I feel very alone.
    I started crying in the ER becausae I feel like a burden. I don't want to be in this life anymore.
    I am sorry you are not getting better medical care and some help to relieve your discomfort. It sounds horrible to have to endure such pain and frustration. i think if I were in your situation if I could swing it, i would leave for Mayo Clinic or Cleveland Clinic to get some in-patient help and relief.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #18
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    Quote Originally Posted by drz View Post
    I am sorry you are not getting better medical care and some help to relieve your discomfort. It sounds horrible to have to endure such pain and frustration. i think if I were in your situation if I could swing it, i would leave for Mayo Clinic or Cleveland Clinic to get some in-patient help and relief.
    There is also the vasculitis specialist center at UC San Francisco with Dr. Sharon Chung, included on the VF specialist list. Hardly any distance to travel, and has been discussed before, but it seems to come down to that it is not in the Kaiser health care network, if I remember right.
    Anne, dx'ed April 2011

  9. #19
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    Quote Originally Posted by NikkiNicole View Post
    Thanks everyone. This is why I absolutely love and adore this forum. I felt so alone and perhaps, a little crazy. But then, I see all these wonderful remarks and I am reminded that I am not alone. Not at all. I have all of you.

    I spoke briefly via email with my rheumy today. She wants me to change my diet again. I've been meaning to do this but have been very lazy about it. It's just easier to eat what's put in front of me. She also said she hoped that I was off work still. I told her that I wasn't. There wasn't anyone giving me any kind of direction other than shoving me out the door.

    I haven't heard back from her after letting her know that sinus rinses still bring me agony ... my ear is killing me, my nose feels like someone is raking the inside of it w/ a wire brush ... so ... yea, I still hate life. I'm hoping she checks back in before she goes home today.
    We are happy to have you too! I visited a Weggie in Canada for a bit,(A very irreplaceable experience) and the family I staid with was gluten free. By the time I came home my blood test results showed great improvement and sticking to the diet helped me stay off pred. I know not everyone reacts the same but rest and diet are really vital points in recovery. It really makes a difference, it just takes a little bit. I hope this new plan helps you!
    Experience is the only way to survive. <3 Rini Orange

  10. #20
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    One thing that has definetly helped me Nikki with my WG journey when things got really rough was to get some counselling. About 3 years ago when all my treatment wasnt working I seriously doubted i would "see Christmas", however the team at Addenbrookes recognised this problem and offered me the services of an "in -house" team of counsellors. They, along with a 2 year programme of Retuximub, turned things around for me.
    I agree with the comments made here that you must get seen by someone who knows what they are dealing with, and give you some inner peace that you can take and start rebuilding from within. A couple of small steps, taken now, will break this circle of fear and doubt. Start by looking after number one, YOU!!

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