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Thread: light's a shining

  1. #1
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    Lightbulb light's a shining

    I joined this group on 26Nov2010. @debhaz22 was the first person to respond. Since that time I have gone through lots and lots of ups and downs. Today, I had an appt with my rheumy and he said I have finally achieved drug-free remission and he doesn't need to see me until Sep 2019, as in 2019! Of course, I'm still on about 17 drugs for the other stuff I have, but I'm not taking any drugs for wegs. Hope it lasts. I'm feeling very well, buts it's taken 7 years to finally see a glimmer of light at the end of the tunnel. I know I'll never catch the light, but just seeing it is fun.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    Default Re: light's a shining

    Quote Originally Posted by vdub View Post
    I joined this group on 26Nov2010. @debhaz22 was the first person to respond. Since that time I have gone through lots and lots of ups and downs. Today, I had an appt with my rheumy and he said I have finally achieved drug-free remission and he doesn't need to see me until Sep 2019, as in 2019! Of course, I'm still on about 17 drugs for the other stuff I have, but I'm not taking any drugs for wegs. Hope it lasts. I'm feeling very well, buts it's taken 7 years to finally see a glimmer of light at the end of the tunnel. I know I'll never catch the light, but just seeing it is fun.
    Congratulations to you! I'm happy for you!

    Sent from my BLN-L24 using Tapatalk

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    Default Re: light's a shining

    Well done! It's always good to clear some space in the medicine cabinet. Hope your remission is solid. Be sure to let me know if you ever make it back up here for another Iditarod start.

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    Default Re: light's a shining

    Thanks, guys! I feel pretty decent. I just hope it lasts.

    Yeah, Tom, that race is rolling around again. First weekend in March I believe. How's the snow.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Default Re: light's a shining

    Great news @vdub!! I hope everything continues on a positive trend!!
    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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  9. #6
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    Default Re: light's a shining

    Congrats!!


    Sent from my iPhone using Tapatalk

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    Default Re: light's a shining

    Quote Originally Posted by vdub View Post
    I joined this group on 26Nov2010. @debhaz22 was the first person to respond. Since that time I have gone through lots and lots of ups and downs. Today, I had an appt with my rheumy and he said I have finally achieved drug-free remission and he doesn't need to see me until Sep 2019, as in 2019! Of course, I'm still on about 17 drugs for the other stuff I have, but I'm not taking any drugs for wegs. Hope it lasts. I'm feeling very well, buts it's taken 7 years to finally see a glimmer of light at the end of the tunnel. I know I'll never catch the light, but just seeing it is fun.
    Glad to hear it. We joined the same year and I think we connected way back then. I remember we had some private messages. I have been amazed at your activity level given the myriad of health issues you have faced. I am also very amazed that you have attained a drug free remission. I have been in a drug induced remission for years and there are no plans for me to try for a drug free one because of great level of risk involved for me.

    So what is next on your agenda of things to do and places to go? You are a great inspiration on how to make the most of life despite GPA and other health issues. Keep it up. I have enjoyed our correspondence and hope we can keep it up for many more years.
    Last edited by drz; 02-14-2018 at 05:49 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  13. #8
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    Default Re: light's a shining

    Yes, we connected a long time ago, drz. Its been a long haul.

    I still have the other issues to contend with. The "no pit" thing requires a lot replacement hormone drugs, but those have been pretty stable for a long time. The fibromyalgia is responding super well to its two treatment drugs; lyrica and cymbalta. The pace maker is "just there" -- I never think about it. The only issue that causes me some angst is the paralyzed diaphragm. It robs me of just enough air where I can't snorkel without a vest. If I lose the vest, I quickly run out of enough breath to stay afloat, even in sea water. That's more inconvenient and annoying than anything. And, I have to come back home every 3 months for testosterone, so our trips have to be carefully planned such that they fit in the 3 month window and, of course, that I have enough of the other drugs to cover the entire 3 month period. Its a bit of a logistics challenge, but I have a Master's Degree in Logistics, so I should be able to handle it, eh? :-)

    The biggest thing is that I'm feeling well enough to make the plans and do things. Currently, I'm back out in the shop working on my MGA doing much needed general maintenance to keep the old bugger running. In 10 days or so we fly to Ft Lauderdale to get on a cruise ship to go through the Panama Canal to San Francisco. Then we're home for two weeks and we go to Kauai for two weeks with our son's family and our only granddaughter.

    My wife wants to go to OZ and NZ and I want to go back to the UK, so we have lots of stuff planned. I hope we can get just half of it done. We have a lot of catching up to do. Thanks for all the well wishes from everyone!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Default Re: light's a shining

    WoW!! WOW!! WoW!!

    Great news Vaughn, you had me worried a while back there. Fantastic that you are back in the planning stage for those trips which I know mean so much to you both.

    I have to say its a tough call to make; Oz/Nz and or the UK. Obviously I'm biased as after your terrific hospitality I would love you both to come to the UK and in particular, our home so we could show you a good time!!

    And then of course you've got your RV to dust down and make those great road trips.

    So pleased for you and keep it coming.

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  17. #10
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    Default Re: light's a shining

    Yeah, Geoff, things are going pretty well. The odds of us getting back to the UK are a lot higher than going to OZ. We still have a direct flight to Mildenhall and its been a long time since I've seen my relatives in Germany. Of course, we now have a granddaughter vying for our attention, so that compounds things. I guess having so many options is a good thing, but coming to the UK to visit you two is high on the list.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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