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Thread: life is still a rollercoaster after 3 yrs!

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    Smile life is still a rollercoaster after 3 yrs!

    hi,i am sure i had wg for years before finally my kidneys almost failed & my gp who had some knowledge of it sent me to addenbrookes hosp. in cambridge, where they have a vasculitis clinic,
    initial treatment was high doses of pred & immun suppress.the first 6 mths were horrendous!partly due to side affects from drugs,thanks to good
    support from my gp & patience from my family(sometimes sorely tested)
    i got through the worst,i would say to anyone newly diag. to take one day at a time, however bad you feel & sometimes you will wonder if you will get thru, my doc told me from the start 2 years is how long it takes to get it under control,you then realise life is changed,its THEN when you have to learn to live with it! after 18 mths ive relapsed, so back to pred, & more
    frequent visits to clinic, talk about swings & roundabouts with this wg,
    i am retired, so in many ways wg does not affect me as much as younger people with more active lives,
    had monthly clinic app, yesterday, was asked to take part in research into
    brain involvement in diseases that involve the immune system. sounds like fun!
    wish i had found this site few years ago,we need all the support we can get,because its so rare, it can be very lonely & scary out there,
    if i can help anyone get thru a bad day i would be happy too, often still needful myself!
    i must stop waffling on! best wishes berylj

  2. #2
    Doug Guest

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    Beryl-

    What a thoughtful, encouraging, yet realistic entry!

    When I first had WG but was able to go to work again, I followed the postings of a fellow who came down with it in his early seventies. He'd been diagnosed a couple years ahead of me, so he'd had time to heal a bit. He'd returned to normal activities, was very upbeat, positive, a role model for me since I didn't know about any support groups (this one hadn't been started yet) and his life after diagnosis sounded wonderful. Then he died. The family noted this fact and I found his obituary in a paper local to his homeplace: neither indicated WG as the primary cause, but don't think that didn't send a panic into me!

    The point: the more weggies stories you hear, the more questions you ask, the more weggies you meet (!), the more you interact with other weggies on support forums like this one, the more realistic you can be about this disease, its effects, and how it may affect you. Knowledge is power!

    I hope you continue to post!
    Last edited by Doug; 08-30-2009 at 05:13 AM.

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    hope i didnt sound too saintly! after clinic visit im always upbeat for a few days,
    tomorrow i will probably feel sorry for myself & swear at the walls that is the way it goes! but now ive found this site i can log on for a chat with other wg sufferers,
    best wishes berylj

  4. #4
    Doug Guest

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    Hey! It doesn't hurt to come across like Mother Theresa as long as you don't believe it! Ha! As for the upbeat/downbeat business, isn't that the life of a weggie? I recently had a few symptoms. It put me in a somber mood, of course. Then they went away. I'll mention them to my WG doctor, but more likely than not, I'm still in remission. If not, well, I know the routine!

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    Welcome, Beryl. I'm looking forward to hearing more from you, on a Mother Theresa day or not! (That cracked me up, Doug)

    As far as swearing at the walls, oy. If these walls could talk.

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    Ah, I have been a bit quiet the last few days because ... here it comes ... I was feeling blue. Yes even I get blue once in a blue moon. I just felt like I have nothing to contribute and just feeling dumb. It didn't help that I was on my sleepless in Mission week. Thank goodness these blue days are so rare.
    Beryl, I was diagnosed November 2006 looked at some other forums and this one by far is the BEST. No other like it. Venting, laughing, crying, joking, sharing, helping,
    but most of all creating a family. Just knowing that someone is a stroke of a keyboard away is a great comfort. I don't have a WG specialist anywhere near and just a regular rheumy and my gp treat me, so the wealth of info here keeps me going.
    Jolanta

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    Oh, Jolanta, I wish I'd known you were blue. I sure understand how it is.

    I hope today you're feeling more like this : or (dare I wish for?) this :

    I agree about this forum being the absolute best. I also belong to a Yahoo group, which I joined at the same time. It's just not the same at all--very hard to get a feel for who everyone is. The setup is discouraging. There's no way to easily look up other posts and follow threads. And no cute pictures! There are a number of people I'm quite concerned about on it, so I hang in there for them.

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    Blue days rare as they are they still make me fill not like myself. After having a great time swimming in Harrison Hotsprings pool, I forgot my swimming suit, one that I realy liked, and I guess someone walked out with it. That may have percipitated my blue days. I still just can't believe that someone can steal a bathing suit, I am just so naive I guess.
    Jolanta

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    I find that anything can trigger blues sometimes. I think we Weggies underestimate how much our bodies and minds are dealing with all the time. So sometimes it just takes something small to bring it all up to the surface.

    I hope there's an even more fabulous bathing suit waiting somewhere for you to find it.

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    Hi Beryl,
    Great to read your story. Like you I visit Addenbrookes in Cambridge and see either Dr HEwins or Dr Jayne. Stella, Jane, Karen and the others in the clinic are fanatstic and very supportive. As wierd as it sounds, I look forward to going there for my check ups as I feel SAFE and SECURE. Maybe I'll bump into you and we can chat over a coffee in the food concourse. All the very best, Geoff

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