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Thread: Overdue Introduction

  1. #21
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    Quote Originally Posted by Rose View Post
    I know how beautiful your part of the world is through photographs that my daughter is forever taking annd posting on FB for my enjoyment, the most recent being photos of the trees with their beautiful autumn colours. Nothing she would love better than for myself and her dad to visit there. My husband is keen but I have lost all trust in my body and I am sort of scared to venture abroad in case anything happens.
    We are happy to be your traveling companions, Rose. Speaking of going on the road, I appreciate your fear of venturing out too far. Comfort zones are called that for a reason. But if you decide that you want to enlarge that zone (and I kind of hope you do, because looking outward and into the future is therapeutic), I have some tips for you. One I will tell you now, because I use it a lot, a way to get peoples ignorance of our disease to good use: I always wear a good filter mask on the plane. Not only does this help directly (airplanes can carry bad air around for all the hours of the flight), but if the plane isn't full, you often will get a row all to yourself. The other passengers will assume that you are contagious and ask to be moved. No, the point is that they are (or could be) contagious, but you could benefit from their mis-comprehension!

    I'm glad you have found some local weggies in addition to your forum buddies. It all helps!

    Al

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    Quote Originally Posted by annekat View Post
    Rose, it sounds like you and I are doing about the same, 12.5 pred and some sinus issues.Anne
    Ann my current sinus issues are the result of a recent flare. I did have sinus involvement on diagnosis but WG had also affected my kidneys and lungs. I had been almost symptom free in my sinuses for the past couple of years. I had been on 5mg of pred for almost 3 years but the doctor upped the dose to deal with the flare. I have been tapering from 40 mgs for the last 18 days or so and hope to get back to 5mgs in about 12 days. I take cellcept 750mgs twice daily. I am hoping all will continue to go well with the tapering as it did in the past though I cant seem to get below the 5mg dose.

    Look forward to the pics!

    Rose

  3. #23
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    I'm glad you have found some local weggies in addition to your forum buddies. It all helps! Al[/QUOTE]

    Yes. I am hoping that through chatting with the local wegggies I can find that elusive doctor with the "holistic big picture perspective" and as one chap has already said I need to find a doctor who cares!. I think he may know one...will find out when I have coffee with him next week

  4. #24
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    Nice to meet you, Anne. I hope you continue to do get stronger.

  5. #25
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    Rose, you have had a much longer haul with Wegs than I have! Although I'm sure I've actually had it since 2008, and my ENT doc thinks so, too. So you have had the ups and downs with the disease and the preds, something I'm just starting to learn about! Sounds like you know how to taper to 5mg fairly fast. I'm sure I couldn't do that at this point. Sorry about the kidney involvement, and best of luck with your progress. I'm pretty busy with work right now but will try to get at least one avatar pic up pretty soon, I'm thinking one of Mt. Rainier.

    Anne

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    Thanks, Sangye! You must have posted while I was replying to Rose just now. It will be interesting to see how things go down the road, as I am 59 years old. But with the help of this forum, I'll deal with it somehow.... it helps to be doing well now, but you and others have issued plenty of warnings about the nature of this disease, which should not be taken lightly. I hope the same for you, that things improve and continue to do so.

    Anne

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    Sounds like you know how to taper to 5mg fairly fast. I'm sure I couldn't do that at this point.

    Anne[/QUOTE]

    Anne just a warning on the taper. I could taper fast as I was on the higher dose of 40mgs for just two weeks. Had I been on it for a long time, the taper would be much longer.....months instead of weeks!

    My daughter recently sent me some beautiful pictures of Crater Lake.

  8. #28
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    Thanks for that, Rose! I am having trouble going from 12.5 to 10mg., but once I get there, I think my doc wants me to stay there for awhile. That will be OK.

    I have never seen Crater Lake! Just in pictures. But this is a land of volcanoes, for sure. Mostly inactive or dormant, but you never know!

    Anne

  9. #29
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    Quote Originally Posted by annekat View Post
    ...I have never seen Crater Lake! Just in pictures. But this is a land of volcanoes, for sure. Mostly inactive or dormant, but you never know!
    Nice avatar, Anne--your place? But yes, this area is marked by volcanoes. Even though they are mostly dormant, the occasional exception does keep out the riffraff who think they want to move here!

    Glad to know you are coping with things. But stay wary. Like with volcanoes, you never know...

    Al

    Small world indeed, and a sychronistic one: I am looking at a snapshot of my wife and me in the snow at Crater Lake, before we were married, so...several decades ago. We were babies!

  10. #30
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    Hi, Al. Yes, that's my house. It's my grandparents' old beach cabin which I've been living in since 1991 and I inherited it in 1997. On Eld Inlet at the southern tip of Puget Sound, actually across the road from the water but family owns the waterfront so I have access. It's a very special place to me.

    Yes, Mt. Rainier is candidate for blowing its top. I didn't find a good pic of it to post but will work on it, for Rose and others. And I said I'd never been to Crater Lake but remembered I did stop there briefly, also decades ago, maybe around the time you and your wife-to-be did. I have spent some time around Mt. Lassen in California, the southernmost Cascade volcano, along with Shasta, the only two in that state, I believe. A beautiful area, too, and Lassen has blown during the 20th century, I believe.

    Yep, I'm staying wary.... as soon as I say how well I'm doing, Wegs reminds me with joint pain, nasal stuff, or just plain tiredness, that it's not going to let me off that easy. But yes, I am coping.

    Anne
    Last edited by annekat; 11-27-2011 at 02:56 PM.

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