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Thread: Hi Everyone

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    Default Hi Everyone

    I joined this site a few days ago but am not very good on computers and didnt know how to introduce my self. My name is Jenny and Im from Perth Western Australia. I am 52 years old and was diagnosed with WG 13 years ago. Since joining Ive been reading your posts and am amazed at how all of you are so brave and still seem to be so happy. I feel so devestated and depressed at the moment. Up until the past few weeks ago I seemed to be handling things really well. I havnt had a flare up for 13 years but am permanently on steriods and they are causing me most of my problems at the moment. I think Ive been in denial for all these years and now finally have to face up to the fact that I actually do have WG. My Doctors have not been helpful over the years. When I see my specialist with symptoms he has never said to me that they were caused through the WG. BUt after reading some of the things you all have written everything is starting to add up. Everytime I try to reduce my steriods, even slightly, the symptoms come back. I am so glad Ive found this site.

    I am really looking forward to hearing from you all

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    Hi Jen.

    Cheer up!

    You can have a good life with Wegs even with all the drug side effects, it's just that you may have to adjust your expectations a little to fit in with your New Normal. I'm not denying that things can be crap at times (I found myself in tears and having to be hugged only yesterday when it all got to be too much), but then I think of friends who have died at a younge age and decide that I'm doing better than they did in spite of the problems.

    I can understand your frustration at the steroid dilema. I've been taking the stuff for 25 years and have suffered just about every side effect going. The damn stuff is wrecking my body! But the alternative is worse. My advice is to try to not fall down stairs! That was my biggest mistake.

    Anytime you feel like venting your feelings, post them on here and you will get a symathetic response. We're all in the same boat and will know exactly how you feel.

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    Hi, Jen, and welcome. We are all hear for you. Are you on other drugs as well, or just the steroids?

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    Hi, Jen ...I feel your pain...I myself have been on/off prednisone for over 30 years. I will probably be on them for the rest of my life. How much prednisone are you taking? What are your symptoms..or flare's that happen when you try to wean/go off prednisone?

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    Hi Jen, I'm glad you're here. Please let us know how we can help you. We all understand the tremendous grief, frustration and difficulties of living with this stupid disease. We all have days when we feel better able to cope-- dare I say even "hopeful"--and days when we're truly down about it. Please don't think you are alone in feeling that way about Wegs.

    Even if everyone posting on a particular day seems to be in a good mood, if you need a hug or support or want to vent, please ask for it. This group is amazing.

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    jen listen to these peoples:..i am newly diagnosis and at times mad as h***..this iz not how i planned my life....but through this forum i have learnwd alot...cried alot and vented alot....and jack is right ....i am trying to see the half full glass....not half empty..we ll understand....just let us help

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    Hi guys, thank you so much for replying to my post. I appreciate your much needed support. It is great to be able to talk to others who understand. I am feeling much more positive now. Yesterday was a bad day but today is much better. Ive decided to take one day at a time from now on. I am not going to listen to the specialists negatiive remarks. I have stenosis in my right leg and am having difficulty walking at the moment. I told specialists I would get a exercise bike and ride as much as I could until I started to hurt and they said "dont bother you wont be able to do it" and they also said at the same appoint that I will never get off steroids and a few other negative remarks. Well I got the bike and I rode 800 meters the first night, 500 the next (only had it 2 days) I'll show em. I think I need to change my specialists, which I will do. I am on other drugs as well but not for the WG. I have fairly bad diabetes, which is hard to control because of the steroids and am on a handful of other drugs to beat the side effects of the steroids. After reading some of the posts on this site I am very lucky. I was shocked to see what some of you went through and still remain so positive. If you all can go through what you do and remain the way you are then so can I.

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    Good for you Jen, but also try to be kind to yourself and don't punish your body too much. Wegs takes a heavy toll on your stamina and if you overdo things you will pay for it later.

    Getting off steroids is a great target and achievable for many, but many more are on them for life, myself included. If you start cutting down and experience bad symptoms, increase the dose immediately. It is a dangerous game and you can do yourself a lot of harm.

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    Quote Originally Posted by Jack View Post
    Good for you Jen, but also try to be kind to yourself and don't punish your body too much. Wegs takes a heavy toll on your stamina and if you overdo things you will pay for it later.
    .
    I've been having a good week.

    Family BBQ yesterday (21 people). Did the cooking as I always have. (Was chef for many years) Half way through, my anxiety levels shoot through the roof, head went very fuzzy, sinus went into overdrive, started crying waterfalls, breathing was laboured.....to put it mildly I was in a bit of a state. Luckily, the others were well into socialising so most did not see the crumbling me. Naturally I finished the cooking etc but be warned WG does bite!

    24 hours on, I'm still fuzzy and feeling weak & weepy....roll on tomorrow.... another lesson learnt.

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    Aww Hammy... "weak and weepy" is classic Pred. It usually means you're overdoing it physically and/ or emotionally. Remember, your adrenals cannot make the adrenaline they need to cope with basic stress, so a major BBQ like that probably just demanded too much from them. Lay low for several days to recoup.

    Jen, I'm glad you're taking matters into your own hands and focusing on getting better docs. I agree with Jack, though-- please do not push your body to prove anything to them. Pred makes you feel like you can lift a car and overactivity will always deplete you more. You can wind up on higher doses of pred for longer by doing that and also increase the Wegs fire dramatically. Be gentle with yourself. Exercise at low levels-- go for time and distance, not intensity. Healing requires a lot of energy, so don't deplete all your resources by overexercising. A good exercise session means having LOTS of energy left over at the end.

    Because it's a steroid, pred also brings out the fight in us. That can be good in moderation when we use it to advocate for ourselves, but it can also become an obstacle in communicating and healing. I am naturally a strong, independent person, but on high-dose pred I was intolerant, defiant and unyielding. I was so determined to prove my docs wrong that I harmed myself. There were many times when my fighting spirit kept me alive and many times when it drove me straight into worse crises.

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