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Thread: I was officially diagnosed today with GPA

  1. #11
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    I think it will take a long time to really accept. I think we go through a grieving process after receiving the news. I'm still sometimes in denial. I'll have a good day and think, nah, I'm okay, maybe I don't have it! Then reality always comes back. It is good to have hope and think we can get better. I'm still trying to balance that with acceptance, patience, and having reasonable expectations of myself. Let me know if you find the secret formula. The members on here who have managed the disease for many years seem to have a good handle on finding that balance. I hope to get there. You will too, but first allow yourself time to let it sink in and process all the emotions and accept the change in your life. I hope you get treatment and start to feel better very soon.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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  3. #12
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    Mike

    Yes, it was so personal for sure! I just kept saying OMG she called me and stood there in shock. A Dr. who is finally listening to me and doesn't think I'm crazy.

    I plan on reading this book. I've taken it when I get COPD flare ups usually in Dec of each yr and I hate the way it makes me feel. Very agitated BUT I do feel better as in breathing.

    The doctor asked me so many questions that my head was spinning. she was writing all my answers down as I was answering her BUT I didn't get to go over all my questions. She said, let's wait for blood work to come back and I will call you at home and I will answer questions then...So I have my list of questions by the phone and I'm ready.

    I also started a binder yesterday with all lab results, test results, list of all dr's I see and started a journal that she wanted me to do.

    Your Rheumy sounds like a good guy and a great sense of humor. This Dr. I saw, when she first came in the room it was like she had attitude (my brother told me before going in, if she has attitude just let her ask the questions and just answer and then your turn. I did just that and at the end she was smiling and very helpful in telling me about the disease GPA. She totally changed her tone and was nice to talk to and just kept saying "I'm am so sorry no doctor has listen to you" now that felt good to hear.

    I see the sun coming out a good day for my walk and turn on the music.

    Thanks again Mike and have a good day

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  5. #13
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    You worded it so well. No, it doesn't feel real to me yet. When I went for my walk yesterday and then the tears just started and thinking wow I have GPA. Then the next minute I am in a daze and can't remember what stores I just passed etc. I'm everywhere mentally with emotions right now. Trying my best to be positive and strong.

    I hope I find that secret formula and if I do I will let you know. When I read the stories of how some members have battled this for years makes me smile, the inner strength and just so positive. So, I just keep reading the stories over and over to help me go that one more hour in the day.

    Yes, I have to let my self process all the emotions and accept it..BUT I am blocking it all out/making my self numb. I started to journal yesterday and hoping this will help me in accepting it and moving forward.
    I just want to start treatment so bad, but also scared at the same time.
    Today is a new day and keep smiling and enjoying all the little things in life

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  7. #14
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    Hi Alysia
    Thank you for the warm welcome to the group Not really sure why she hasn't started treatment. She said she wanted blood work and CT Scan done asap, then she would call me about treatment. I would like to meet with her in person in regards to the treatment, but maybe a phone call is quicker then waiting to go back to her office again. Oh, time she took for sure, but I wasn't left with much time for my questions. So, I have my list ready when she calls.
    My ANCA was 1.9 july 31/17 and yesterday it was 2.2..it went up a bit and have blood in my urine and CK enzymes are 165...I am NOT sure what all this means.

    But all other test are normal. I just want treatment to start!

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  9. #15
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    Sue, I guess she wants to see all the results in order to choose the best treatment. C-anca's scale in Israel is different so I can't tell much about your numbers but it seems that wg is active. They didn't check my CK.

    Anyone else around here knows what it means ?

    Hang in there and please update us.

    P.s. as for accepting our life with wg, Faith plays the most important part in acceptance, for me and for some others. But according to the rules of the forum we are not allowed to discuss here religion or politics, so I will stop at this point.
    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.

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  11. #16
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    This week end can't go fast enough for me. I just want the call from my Rheumy to know what medications to start on. Hard day yesterday with pain and swelling in feet and legs. I am so so cold the last few days. Feels like a cold coming on Not sure if I am suppose to let the dr know if I feel a cold coming on. I will call her office tomorrow and let her know.

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  13. #17
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    So glad you came on this site to share your story. I'm looking forward that you get the medicine soon. Glad she ordered labs and ct scan. Hang in there!!

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  15. #18
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    Thank you Elephant

    I am hoping tomorrow is the day she calls me to start treatment. Today I am under the weather a bit..I just to call it a COPD flare up but not sure what it's called with GPA? GPA flare up? It hurts so bad and SOB. Took 50 mg of steroids yesterday and today but chest is still throbbing lots. So, fingers crossed tomorrow is the big day..let's do this

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