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Thread: Where is everyone?

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    Default Where is everyone?

    It's been awful quiet on here for a few days. Is everyone hibernating or something?

    Happy Holidays everyone!!!!

    santa-hat-cartoon-emoji-christmas-holiday-010-512.jpg
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    I've been working and exercising and trying to lose some weight. I've also had trainees while at work so I can do my usual scanning of the threads! Merry Christmas!!
    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

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    I was wondering if something was wrong with the site.

    Merry Christmas and Happy New Year to all!!!��
    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

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    Thanks for posting this thread, Mike. Please forgive me if my post will not be "in place".

    I miss the good old days, when my beautiful dr. Phil was here. Most days it feels cold and lonely here. I am sorry. Some days I am not even sure if I am "allowed" to share what I feel.. I feel like that right now.. typing and deleting then typing again... not sure what will turn out when I will press the button of the "Post Quick Reply"...

    And still, eventhough I dont know how much I am "allowed" to share, who will hear me, or understand, when I finally do share, it is only here. Not in my daily environment. Never at work, not much if any with family or friends. Not on facebook. I hate to overload others. What can I tell them: "I feel low and sick" ? No. I say that I am ok. And I dont look sick. So it works fine.

    Only here I take off the "mask"... so thank you all for being here. I love you and I keep you in my prayers ♡♡♡
    Merry Christmass ☆☆☆
    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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    Quote Originally Posted by Alysia View Post
    Thanks for posting this thread, Mike. Please forgive me if my post will not be "in place".

    I miss the good old days, when my beautiful dr. Phil was here. Most days it feels cold and lonely here. I am sorry. Some days I am not even sure if I am "allowed" to share what I feel.. I feel like that right now.. typing and deleting then typing again... not sure what will turn out when I will press the button of the "Post Quick Reply"...

    And still, eventhough I dont know how much I am "allowed" to share, who will hear me, or understand, when I finally do share, it is only here. Not in my daily environment. Never at work, not much if any with family or friends. Not on facebook. I hate to overload others. What can I tell them: "I feel low and sick" ? No. I say that I am ok. And I dont look sick. So it works fine.

    Only here I take off the "mask"... so thank you all for being here. I love you and I keep you in my prayers ♡♡♡
    Merry Christmass ☆☆☆
    Dearest Alysia,
    We hear you and want to hear you. Please always share with us. I'm sorry Phil is not here to support you.

    It is at times a difficult road we are walking. I feel sad and scared tonight. I don't want to tell family that my kidney function tests are not ok. It's too close to Christmas for news like that. Or That my Dr. Is moving my next ritux up to 4 mos instead of 6. I just had ritux 2 days ago. There is glucose in my urine now, joint pain in my hip. I feel like I'm getting worse. I'm certainly getting very fat. But what did I do when there was blood in my urine? I ate a whoopie pie while I waited for my rheumy appt.
    My eyesite is blurry.
    I'm tapering pred and am now at 15.
    Sorry to be so depressing.

    In any case, I love you like a sister Alysia and am thinking of you and praying for you.

    Gab

    PS - I've been on Facebook weg sites Mike. Plus busy time of year.

    Merry Christmas to you all! ... its about so much more than gifts isn't it...
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    When it it hits minus 30 F tonight I might hibernate but then the internet and TV and books and indoor things become more important. I had noticed the forum was less active but attributed it to Christmas rush and busy activities like concerts and parties and other fun things people are doing.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Still here going to Philadelphia in 2 weeks for DR appointment and Rituximab infusion. Busy trying to meet company year end goals
    Hope all have a Merry Christmas and the New Year brings better health to us all

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    I think it seems to not only be a busy holiday season, but is also time for a lot of wegs rtx season! I am wishing everyone all the best for both!
    Jana


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


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    Quote Originally Posted by Gab122 View Post
    Dearest Alysia,
    We hear you and want to hear you. Please always share with us. I'm sorry Phil is not here to support you.

    It is at times a difficult road we are walking. I feel sad and scared tonight. I don't want to tell family that my kidney function tests are not ok. It's too close to Christmas for news like that. Or That my Dr. Is moving my next ritux up to 4 mos instead of 6. I just had ritux 2 days ago. There is glucose in my urine now, joint pain in my hip. I feel like I'm getting worse. I'm certainly getting very fat. But what did I do when there was blood in my urine? I ate a whoopie pie while I waited for my rheumy appt.
    My eyesite is blurry.
    I'm tapering pred and am now at 15.
    Sorry to be so depressing.

    In any case, I love you like a sister Alysia and am thinking of you and praying for you.

    Gab

    PS - I've been on Facebook weg sites Mike. Plus busy time of year.

    Merry Christmas to you all! ... its about so much more than gifts isn't it...
    Thank you SO much Gab, my sister ♡

    Eventhough you came here only few months ago, I feel like you have being here for years, all the way, and that you know my beautiful dr. Phil. He sure knows you, as I keep you in my prayers and I ask him to pray with me, from his good place in the presence of God.

    I am sorry that you have tough time and I totally understand how you dont want to upset your family. I do much the same.

    As for rtx every 4 months, some weggies get it and are doing better. I think Geoff is getting rtx every 4 months but I am not sure. Please read Nikki's thread near, and see how fragile the 6 months are in keeping us away from flares.

    As for your kidneys, might it all be a temporary reaction to the procedure that you had in the kidneys few days ago ? You said that they said that its not wg in the kidneys ?

    Hang in there. Sending gentle hugs ♡
    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.

  10. #10
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    Default Where is everyone?

    Hi everyone,
    I do feel like I've known you all so long I'm feeling a bit better today emotionally and my hip hurts a little less. So that's good. I worked today - I think that work is a good distraction for me.

    As for rtx every 4 months, my Dr sent me an email. I'll attach her reply when I asked why she changed it from 6 to 4 mos.

    As for my kidneys, I don't think blood in urine is from last week's procedure.
    They went thru the artery to the mass but never embolized it. I don't think it would cause blood. It's possible the mass itself could cause blood tho. My Dr says she is not worried. And Yes, they say I have do NOT have wegs in my kidneys. Just an angiomyolipoma. My decrease in kidney function could be from (a) wegs of course or (b) from the angiomyolipoma displacing my kidney or (c) even from the prediabetes I know have.
    If it (A) I just had ritux tues.
    If it's (b) I'm going for an MRI in June to check angiomyolipoma (AML) and that can be moved up if kidney function declines.
    If it's (c) I'm on a pred taper

    So I'm doing better today. Tired but good.
    Thx all!
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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