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Thread: Hi ! New To the forum

  1. #21
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    That's the way.

    I tried running while I was taking cyclophosphamide and prednisolone but just couldn't manage it but I could manage to cycle with my mates. They had to wait for me a bit and my heart rate used to shoot up to over 180bpm easily so I had to take care not to overdo it.

    Keep up the good work and if you want some encouragement you can join me and a few of my mates on Dailymile (My Home | dailymile), it's a good way to share you workouts and have a laugh with like minded friends, just search for John English, Newcastle upon Tyne, UK. You can enter any type of workout and it logs your miles and workout time.

    Cheers

    John.

  2. #22
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    Or maybe not

    Good luck with the training and let us all know how you get on.

    John

  3. #23
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    hi bips i totally fell the same way i to had full blown wegeners and was diagnoised in sept 2008 with the prednisone i had a weight gain my wife and i joined a gym and i have lost 45lbs i have always been active but as you i am in the best shape i have been in for at least 30years i feel awesome im still on meds i go to the gym at least 3 times a week i sometimes feel to tired to go but when i get there and have a work out wow i feel good. keep up the
    good work and the postitiive attitude

  4. #24
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    Welcome, bips! you will find us a very understanding group and I hope you can gain some info from us. I was running half marathons 5 years ago. Don't think I can run a half blodk now. Darn wegs really saps it out of you..... However, I do think i could packback with 50 pound back for maybe 10 miles, so its all about how you stress the body (I would be pay \for it however and that's what codiene is for,

  5. #25
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    Quote Originally Posted by johnyenglish View Post
    Or maybe not

    Good luck with the training and let us all know how you get on.

    John
    I will do that John, I have been away for the last week or so in Dinosaur world (Drumheller, Alberta) with my folks and my daughter all the while fighting my first real cold ever since diagnosis (so pretty lucky overall) so I haven't been on the site much. The few little posts I have done were on my phone and that gets pretty tedious - especially for someone as long winded as me . I'm starting to get better and the severe phlegm attack seems to be subsiding so I'll get back on the proverbial horse. I was actually starting to feel better at the end of last week - it was mostly in my head and throat, and then I went for my first mountain bike ride since my last flare and the very next day I got the killer cough. I'm pretty sure I pushed it down there by going a little extra hard... but man did it feel good - the wind in my face, going down some of the winding technical stuff, not having to get off and walk any of the uphills. It's amazing how little tastes of the 'old normal' give you the fighting spirt to keep moving forward and loving life. I'll look you up on the dailymile.

    Kelly, yeah, nice to see you back here!!!!

    vdub, codiene, yeah baby... I have morphine too because the codiene didn't touch things after a while. I only use it once in a blue moon, but man it's good to have in a pinch. I also just discovered an old Eastern European way of helping a cough go away - or become less troublesome and it's quite a clean method and worked like a charm for me this last week. Soak a piece of wool (it's gotta be wool) with grappa - it's gotta be grappa (an Italian spirit made from distilled grape stem) and put it on your chest (I would just put it under my pijamas and sleep with it). I know it sounds like hocus pocus, but it took a cough that was severely painful and consistent and almost took it away while I had the stuff on my chest and made it mild afterwards. Can't hurt.

  6. #26
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    Glad to hear you had a good time in Drumheller Marta.

    I use codiene and morphine now and then. I get the morphine from a friend of mine. My doc does not like me using it. I haven't used it since January now. I have used the codiene a couple of times in the last 3 months but only had to take one pill each time so that was good.

    I have been thinking of getting a bike again this year but the last few days, for some unknown reason, my balance has not been that great. Getting some weird dizzy spells with the changes in tinnitus. The balance thing has always kept me away from getting a bike again. Oh well, I can still go for walks.

    Might have to try that wool and grappa thing. I'm not sure where I will get wool, maybe a baby lamb, and never heard of grappa so I will go ask this Italian guy on the other side of town.
    Phil Berggren, dx 2003

  7. #27
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    What kind of yoga? I was a swimmer... not so much now. I picked up a yoga movie after my first hospital round and could walk around on the higher dosage of pred. Now i am stuck for a while but I would like to know a good kind of yoga to start back up with soon. (I am not a runner)
    Experience is the only way to survive. <3 Rini Orange

  8. #28
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    Maybe you should get on one of those tricycles for grown ups... they have motorbikes like that too now.

    Wool - my mom got it from a Polish friend, but maybe a fabric store might steer you in the right direction, as for the Grappa - liquor store. It's expensive and if there are drinkers in the house you'll have to guard it with your life because apparently (I'm not a big drinker) it tastes really really good - and is thusly priced (I got a bottle to take home with me and it was about $26 at Superstore, and in Jasper it's about $36). It's hard keeping Brian and my dad away from it - Brian looks at my like it's almost blasphemy to be using it externally rather than the way it's meant to be used - INTERNALLY... ha ha ha.

    I couldn't use the Tylenol because of my liver, can't use ibuprofen because of the pred and cytox, so it was up to codiene, and on my last flare I got a prescription for the morphine which I still have pills from (I use it vary rarely, and only take one pill at a time - unfortunately it doesn't give me the 'buzz' I hear about, it just takes the pain and dulls it a LITTLE bit)

  9. #29
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    Quote Originally Posted by marta View Post
    I will do that John, I have been away for the last week or so in Dinosaur world (Drumheller, Alberta) with my folks and my daughter all the while fighting my first real cold ever since diagnosis (so pretty lucky overall) so I haven't been on the site much. The few little posts I have done were on my phone and that gets pretty tedious - especially for someone as long winded as me . I'm starting to get better and the severe phlegm attack seems to be subsiding so I'll get back on the proverbial horse. I was actually starting to feel better at the end of last week - it was mostly in my head and throat, and then I went for my first mountain bike ride since my last flare and the very next day I got the killer cough. I'm pretty sure I pushed it down there by going a little extra hard... but man did it feel good - the wind in my face, going down some of the winding technical stuff, not having to get off and walk any of the uphills. It's amazing how little tastes of the 'old normal' give you the fighting spirt to keep moving forward and loving life. I'll look you up on the dailymile.

    Kelly, yeah, nice to see you back here!!!!

    vdub, codiene, yeah baby... I have morphine too because the codiene didn't touch things after a while. I only use it once in a blue moon, but man it's good to have in a pinch. I also just discovered an old Eastern European way of helping a cough go away - or become less troublesome and it's quite a clean method and worked like a charm for me this last week. Soak a piece of wool (it's gotta be wool) with grappa - it's gotta be grappa (an Italian spirit made from distilled grape stem) and put it on your chest (I would just put it under my pijamas and sleep with it). I know it sounds like hocus pocus, but it took a cough that was severely painful and consistent and almost took it away while I had the stuff on my chest and made it mild afterwards. Can't hurt.
    very cool, i like cough go aways
    Experience is the only way to survive. <3 Rini Orange

  10. #30
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    PB. I use hydocodone pills left over from the many months of mis- and un- diagnosis. Also got some from the dentist with a wisdom tooth extraction and more when I had my thyroid removed in Nov. It stops my cough pretty quickly, but usually constipates me the next day. I used them mostly to get through family gatherings, to sleep at night or to get through a church service quietly. I also have a few bottles of Hydromet and Tussionex that I stockpiled during the nearly six months of chronic cough I had. Thankfully, since being on RTX, the cough has stopped suddenly. I also am dizzy or light headed now. No more changing light bulbs or any other work on a ladder. I'm too weak to carry the ladder anyway. I can't wait to feel good enough to walk again. That is my primary goal at present.
    J. Mike Milliorn, Santo Texas
    Diagnosed Jan. 2011
    at the Cleveland Clinic

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