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Thread: Celebrate how far we have come!

  1. #41
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    Quote Originally Posted by Alysia View Post
    wow, drz, it sounds great. I am so glad for you. you have created a perfect environment to live in.
    all is left now is to invite you for a dance (not too wild one)
    I think that it is he, that should invite us for a dance, Alysia.

    drz, what an amazing accomplishment........and that sounds just terrible, but it is what it is........an accomplishment.

    Some new members on here may not know how far drz has come in these last few years (more than he describes, above) - so do yourself a favour and search the files for his story.

    I am really happy that things have started to look up for you drz - and a cruise sounds just wonderful.

    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  2. #42
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    Quote Originally Posted by drz View Post
    ...I don't have a delusional loss of reality but I am very grateful for what I have now and what I can enjoy today.

    ...am starting to entertain thoughts of trying some more short trips and traveling just for fun, and not just my medical trips. I think a short cruise might be best for me so I could rest often and nap as needed.

    Celebrate what we have now and what we can do today to enjoy our lives.

    Thanks for sharing this. Very inspiring, how you live with Wegener/GPA, and manage to keep your diabetes and hearing problems under control.
    A challenge indeed, but you did a great job in the past few years!

    I'm grateful as well, for everything I can enjoy in the world today.
    I hope you 'll stay with us for a long long time, to write more of such beautifull posts here, and tell new people on the site that there is hope, and that you can do a lot to improve your condition and live a good life again, even with this difficult disease.

    I sure hope you will be able to make a short trip in the near future, and a boat trip or cruise seems like a very good idea!
    Thanks again for this wonderfull post!
    Living with WG/GPA since june 2010...

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  4. #43
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    Thanks, drz, for the beautiful post. It seems so long ago that we lost Al, though it was only a year and a couple of months. I don't remember when we lost Lightwarrior but I think it may have been as little as 6 or 8 months ago. They were both beautiful people and your post is a great tribute to them and to the spirit in all of us to continue to find beauty and fulfillment in the world around us as we continue to overcome GPA and whatever else ails us.
    Anne, dx'ed April 2011

  5. #44
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    Thanks drz for the wonderful post and reminding all of us how great life is, in whatever form it comes in. You have made those baby steps turn into to a giant leap from where you were at,in just the last year. Congrats to you with all your improvements! I like that you are taking walks again and enjoying this great fall we are having. I hope you dance all over the place and maybe even at the ball on a cruise.
    My husband has to remind me all the time of the progress I've made in the last few months, of which I am truly grateful. Sometimes we do not realize from were we have been, unless somebody lets us know it.
    I really miss all the wisdom that was shared with us from Al, Jack and Lightwarrior.
    Keep on keepin on!
    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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  7. #45
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    Drz I am pleased you didn't start a new thread as I probably wouldn't have come across this earlier one that has described what you have gone through.
    I now feel quite bad that in a previous post I mentioned something along the lines of "at initial onset of my WG it reached a level that could not possibly worse, barring death". You went through pretty much the same as me, yet you were also put in a drug induced coma (which I wasn't).
    You are an inspiration. I see a lot of similarities in what you have gone through and how you have dealt with it both physically and mentally.
    I feel I'm struggling a little on my mental attitude at the moment as this current relapse doesn't seem to be responding as well to the meds as previous relapses, but reading your post has helped. Thank you.
    Diagnosed April 1995

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  9. #46
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    Al was the one who convinced me to post much of my story that I had shared with him in private messages. He said it might be helpful to others and i am glad to read that it did. Jack, Al, and Lightwarrior are the three that come first to my mind when we think of those we lost from our forum as they shared the most to offer helpful support and encouragement to us all in their posts and private messages, but there are several others here too that are gone that were less well known to us. Some were taken by the wicked Granny before they even had much chance to get to know us or share their stories. We only heard about their sad struggles from their family left to mourn their loss. To honor their memories we need to celebrate and enjoy our lives as much as possible. Thanks to you all for your supportive encouragement to help me do so. May joy prevail in your lives .
    Last edited by drz; 10-12-2013 at 08:00 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #47
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    Drz. thanks for reminding all of us how far we have come and that things could be alot worse. I am so happy to hear how well you are doing, I think a cruise is definately in order for you.I too miss the wisdom and love that Al,Lightwarrior and Jack shared to all of us. I know I will never forget them nor any of you.
    Life isn't about how you survive the storm, but how to dance in the rain !

  11. #48
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    Quote Originally Posted by drz View Post
    Al was the one who convinced me to post much of my story that I had shared with him in private messages. He said it might be helpful to others and i am glad to read that it did. Jack, Al, and Lightwarrior are the three that come first to my mind when we think of those we lost from our forum as they shared the most to offer helpful support and encouragement to us all in their posts and private messages, but there are several others here too that are gone that were less well known to us. Some were taken by the wicked Granny before they even had much chance to get to know us or share their stories. We only heard about their sad struggles from their family left to mourn their loss. To honor their memories we need to celebrate and enjoy our lives as much as possible. Thanks to you all for your supportive encouragement to help me do so. May joy prevail in your lives .
    thank you, drz. from the bottom of my heart. reading your words make me tearful at one moment and at another moment smiling and grateful. God bless you.
    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.

  12. #49
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    Quote Originally Posted by Lightwarrior View Post
    After everything that you have been through, your strength and spirit. My bets are on you, you will finish the ten year agreement and need to sign up for another ten years.
    I was re-reading my old thread today. This quote and Al's note make me sad but remind me how lucky I am to be here today since both of them can't be anymore.

    I woke up feeling pretty chipper even tough we had to turn our clocks ahead an hour for daylight saving time so I lost an hour of sleep. But the sun is shining and our temps are finally above freezing today and the forecast is for some thawing weather for next several days. Finally some sign of relief from our long cold winter and hope for snow to start melting so we can see ground and eventually some green grass again.

    I was thinking how lucky I am today and how good I feel even with my many on going health issues. I decided to review this old thread to remind myself of how much I have recovered in past four years after I was finally diagnosed and treated correctly in April of 2010. I wish Jack, Al, and Lightwarrior were also here to help me Celebrate too.

    My Wegs seems to remain under control with my maintenance meds of 5 mg of pred and 175 mg daily of azathioprine. My lab results for the Weg stuff have been pretty stable now for several months. I have some residual Weg symptoms that increase at times, usually when I get any infection, but other wise the Wegs symptoms also seem pretty stable. The damage from Wegs and decades of diabetes continue to require numerous trips to various doctors at several different clinics to monitor things and deal with various issues that create new symptoms or concerns that need to be addressed.

    For example, I had bone density scan last week and also saw a urologist to follow up on some new symptoms that could indicate some new bladder problems. The nine months of CTX in 2010 increased my risk of bladder cancer and I had to have a TURP surgery in 2012 to repair some urinary problems that were aggravated by its use. I will add this test for cancer to my next lab work. I had some skin lesions froze recently as my broken and suppressed immune system seems to have resulted in two types of skin lesions (DSAP and actinic keratosis) that are considered pre-cancerous and need to be removed when discovered to prevent a more serious type of skin cancer. I also got fitted for some orthotic shoes due to my serious neuropathy that impairs my walking and balance. This is a rather typical week it seems for me. This week I will see my nephrologist about some increased glucose, protein etc in my kidneys and my internist about getting off my generic Fosomax if possible and followup with other routine health maintenance issues. And so it goes but I feel lucky to be able to carry out my new job as a health care consumer by doing these things as an out patient. I am very glad i have stayed out of the hospitals for any over night stay for the past couple years. I have been out of the nursing home for over 30 months too. This might jinx myself but I have even avoided the ER and urgent care walk in places for many months so I really feel blessed.

    Spring is finally coming to our frozen land and in a couple months or so we should have flowers again and green grass to mow and mosquitoes to fend off. Ice fishing has ended and the ice races on local lakes will also end soon as the ice thins. So it is definitely time to celebrate and remember that we still can celebrate our lives whatever they may be today, and we can do it in honor of those who are now longer able to join in.
    Knowledge is power! Wisdom is using it to make good decisions!

  13. #50
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    Your right Drz., even on our bad days we are all more luckier and blessed than we realize.I hope the coming of Spring brings more good health for everyone to enjoy it.
    Life isn't about how you survive the storm, but how to dance in the rain !

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