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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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