User Tag List

Likes Likes:  0
Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 22

Thread: Is this as good as it gets?

  1. #11
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Cathie, yes it is normal to feel like that. Being on high dose of prednisone for a long time is challenging, hang in there.

  2. #12
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Cathie,those high doses of pred are awful. It will get better as you taper, but tapering is slow business. Some people don't feel much better emotionally for quite some time. I sure didn't. It's a good idea to see a therapist as you navigate through Wegs. Maybe I've mentioned that before to you-- I totally can't keep track! I'm extremely sensitive to pred, and without the skills I've learned in therapy I'd be completely out of control. A therapist stays objective, too. It's hard to see ourselves clearly. And none of us came into Wegs free of prior "buttons." Wegs pushes them all!

  3. #13
    Join Date
    Oct 2009
    Location
    Queensland, Aus
    Posts
    69
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Good morning cathiie,
    yes, i remember it well, or rather my family would love to forget the high doses of prednisone. I was not easy to live with, like u i am usuallly easy going, but on the high pred, i would take on anyone, especially if i thought they did not respond quick enoough for my liking (sorry to all those shop assistants out there) & my poor husband, i was unreasonable, argued and picked fights, & when i was trying really hard to be be nice and thoughful, it came out sarcastic. But i can happily say, we made it through. Tell your dr what is going on, and try to take it a bit easier, maybe even try some relaxation exercises or music, anything to try to calm the body down so to speak (stay away from energy drinks!!! red bull and the likes - it will not be pretty, there will be carnage for miles!!!) LOL
    hang in there - u can scream and yell here all you want, and no u are not going crazy
    sharon

  4. #14
    Join Date
    May 2010
    Location
    Parma, Ohio
    Posts
    17
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you Everyone! I really thought I was just having a nervous breakdown before I was diagnosed. People kept tellling me how I didn't "look sick" and since they had never heard of Wegs, I always took it that no one believed me. Just telling my family I am just too tired to do something sounds like more of a cop out than a reason, but I don't think anyone can understand just how debilitatiing the fatigue is if you haven't experienced it. My husband and I had a heart to heart last weekend and if he can find a job, I will cut back to part-time. He has been looking for 14 months, but Cleveland is not a good place to be right now for jobs. However, the Cleveland Clinic is here, so there is a trade off.
    I haven't bitted off any heads yet, but I sure am tempted! Thanks Sharon; it helps knowing I am not the only one! Taking a woman who is beginning to have symptoms of menopause and putting her on steroids is very dangerous! ;-)

    One more question, I know they don't know for sure what causese Wegs, but did any of you have a lot of stress before you got sick? I ask because this has been very hard on my mother and she is blaming my son and what he put us through. I have told her that I don't have the time or energy to hold that grudge, but she is frightened of losing a child and trying to make sense of it all. I was just curious if anyone else has had a similiar experience.

    Thanks again for all the encouragement and friendship. I am so grateful I found you all!
    Cathie

  5. #15
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Cathie - I can tell you that I didn't have any particular stress before diagnosis in January. I'm just an average Jane, 2 kids, 12 and 8, loving husband, good family, job I can do at home (I'm a writer). I'm also a very laid back person. I just had bad luck in this case, but extraordinary good luck in another, because, like you, I'm in the same place as the top specialist for my particular issues, saddle nose and subglottis stenosis. So I'd just say to your mom that she can't blame this on her grandson.

  6. #16
    Join Date
    Mar 2010
    Location
    Western Washington
    Posts
    162
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by csgaippe View Post

    ...One more question, I know they don't know for sure what causese Wegs, but did any of you have a lot of stress before you got sick? I ask because this has been very hard on my mother and she is blaming my son and what he put us through....
    Cathie
    Cathie, that rings a bell with me. Yes, I had stress prior to my last major flare, and my mother is blaming my husband for the job change, move, etc. etc. My mother's reaction is twice as hard, no four times as hard, as any of the life stress I've faced.

  7. #17
    Join Date
    Oct 2009
    Location
    Queensland, Aus
    Posts
    69
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Cathie,
    i had no major stresses before my diagnosis, 35, happily married, with 3 kids (9,11, 14) & i was the fittest and healthiest i had ever been, lost those extra kilo's, all was good in my world, until i developed a sinus infection that would not clear, then it just went down hill from there, that was a little over 3yrs ago now. My mother was and still is in denial about me, but i have a great husband and close friends who are such a God send to me, although at times they all think they are my mother, but i wouldn't have it any other way

    The long and the short of it, we all cope the best way we can, give your mum some time.
    On the other hand you could give her a bigger shock and tell her u r expecting, ha ha ha
    i know i am still a little bit evil!!
    sharon

  8. #18
    Join Date
    Apr 2009
    Location
    Edmonton, AB, Canada
    Posts
    163
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks, I will try and hang in there. I have been on cyclo for over a year now and 40 mg of preds is the lowest dose I have been on since I started in Jan/09.

  9. #19
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    Cyclophosphamide for a year now!!! YIKES!!!!

    I would definitely get a Wegs specialist involved.

    I see my Rheumy tomorrow in Saskatoon and she has already consulted with Dr. Gary Hoffman at the Cleveland Clinic. I would get your Rheumy to consult with him or another Wegs specialist listed with the VF.

    This is your life we are talking about here. You need to be agressive and take action now. You are not getting any better with the big guns and some more experience is needed in your case.

  10. #20
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    If cyclo is not working after six months, you need to ask questions. It is not a drug that can be tolerated long term without serious risk.

    Everyone with Wegeners looks around for what it was in their life that could have caused it and all have their unsupported pet theories. In my own case, I like to think that I picked up a sinus infection that my body could not fight off and the attempt screwed up my immune system. There is no evidence for this whatsoever, but it puts a tick in a box! At the time, I was having a great time testing cars in Italy and staying in a small hotel by the beach. Not a lot of stress there!

Page 2 of 3 FirstFirst 123 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •