User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 18

Thread: A Good Day with Good News

  1. #1
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,213
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default A Good Day with Good News

    When you're a Weggie or someone dealing with Wegener's Granulomatosis good news days are like the pot of gold at the end of the rainbow, this is why I'm posting my good news day update.

    I just got back from my rheumy visit in the city after my two RTX infusions. Things are definitely improving!!!! Woooo hoooo!!!

    Inflamation markers are all within normal range. My liver function tests (all but one) are within normal range and the one that isn't is moving in the right direction and will be in the good zone in no time. The anemia is all but gone, everything on my lab results is looking pretty darn good. I get to taper my pred (my doc is pretty conservative - I like that) 1mg per month until I get to 10 then we'll do something different. I see her again in 3 months to start planning what we do in 6 months. Probably going to go on a maintenance drug - imuran or methotrexate. I'd prefer to see if I can be drug free, but only time will tell. My doc is so awesome - she really respects my opinion and lets me be an active participant in my healing process. I tried to get her to give me a number on how many WG patients she has treated so I could show off on here, but she didn't give me the goods - she just said "lots... lots and lots" she also said she's treated so many Weggies that she feels very comfortable with treating this disease, much moreso than treating Lupus.

    I'm feeling better - I get the odd zap in my head but they are becoming fewer and fewer. I have enough energy to do some pretty physical work around the house (tiled a wall, and am redoing Hana's bedroom while she's with her grandparents in the city). I went skiing with Brian a couple days ago and pulled of 6,000 vertical feet in the fresh powder with some awesome mogul skiing.

    This is one of the reasons I haven't been on the forum too much of late, I have enough energy to keep myself pretty busy so I've beein doing just that - keeping busy.

    I just wanted to post this to say hi (I've had a few people from here contact me to see if everything is OK) and I'm doing great, and also to give the new members thrown into this crazy world hope that despite those first days/weeks when you can't even imagine yourself walking down the block, things get better, and although I haven't gotten back to where I was at the start, I am working hard at getting there some day.

    Things would have been much more different without the support and wonderful people I've met on this forum.

    Thanks to you all.... now write that book and we can publish something that'll help the newly diagnosed.

    Off to build a queen size bed and figure out how to elevate it five feet off the ground. Ha ha. I'll let you know if it works - unless I get squished beneath it.

    P.S. I do know that with this gig come ups and downs and right now I'm up. I know there will be many downs, but I'm totally into this last doctors visit and the current upswing.
    Last edited by marta; 04-15-2011 at 04:32 AM.

  2. #2
    Join Date
    Feb 2010
    Posts
    1,319
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Great News Marta ,good to hear you are doing ok

  3. #3
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    That is AWESOME news, Marta. I'm so happy for you! Brian's last post about Hana missing you on the slopes has haunted me. How wonderful that she has her mommy back.

    (BTW I was just about to contact you... was also worried that we hadn't heard from you lately)

  4. #4
    Join Date
    Dec 2009
    Posts
    752
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Awesome news!!!! Yay for you!!!!!

  5. #5
    Join Date
    Jan 2011
    Location
    Orange County, Southern California
    Posts
    462
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Great news, glad to hear everything is going well!
    Nicole

  6. #6
    Join Date
    Jan 2009
    Location
    Essex, England
    Posts
    611
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Great News Marta!!!

    But aren't you overstepping the mark even with your confidence?

    Quote Originally Posted by marta View Post
    Off to build a queen size bed and figure out how to elevate it five feet off the ground.
    Are you going to do this with the power of thought, levitation or smoke and mirrors?

  7. #7
    Join Date
    Aug 2010
    Location
    Essex, UK
    Posts
    992
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default

    Nice one Marta!
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

  8. #8
    Join Date
    May 2010
    Location
    Walla Walla, WA
    Posts
    206
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Woohoo for good news!!! So glad you are feeling so good, Marta!

  9. #9
    Join Date
    Feb 2011
    Posts
    328
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Good to hear Marta!

    You're lucky... our ski season has been extended!! Almost a foot of snow fell in and around Calgary last night with more expected on the weekend. If we could just find a way to keep it in the mountains....

    I've been rebelling by taking a day off work every other week to head to Sunshine.... I wonder if I could write that off as "Therapy"???

    Miss having the little weggie with me though.... she's back to normal at school for the most part and I don't want to interfere with that right now (catch-up).

  10. #10
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    Woot! Woot! That's awesome Marta1

    How much pred are you on now?

    I will be going on Imuran soon once done ctx and rtx.

    Hopefully will hear if the rtx is approved by Monday.

    Might not see you this summer. Money is very tight. And Mom wants to spend more time with her first two children.

Page 1 of 2 12 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
  •