User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 15

Thread: Hello everyone : I'm a newbie to the group !!

  1. #1
    Join Date
    Mar 2014
    Posts
    199
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Hello everyone : I'm a newbie to the group !!

    I'm Jayne
    Living in Worcestershire 44 and recently diagnosed
    Been using this great site to get to grips / understand the journey ahead !!
    Glad I know why my nose looks crazy !!
    Still feel like myself and am determined to continue to be A Glass Half Full Kinda Person on this journey 👍👍👍


    Sent from my iPad using Tapatalk

  2. #2
    Join Date
    Nov 2009
    Location
    South of Boston
    Posts
    797
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Jayne, a lot of wonderful, smart, caring people here. Feel free to share your story with us when you wish. Others will be on shortly.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  3. #3
    Join Date
    Jun 2014
    Location
    Sallisaw, ok
    Posts
    104
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I am new to wegners also...just found out last month....kinda of overwhelming

    Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

  4. #4
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,975
    Post Thanks / Like
    Mentioned
    15 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Jayne, nice to meet you. This is the best place on earth to be for anyone with WG. I don't know how I'd get through each day without this forum and the wonderful people on it who happen to have the same disease I do. We will get through this together. I hope to hear more of your story when you are ready to tell it, and please ask any questions, take the opportunity to rant or vent if need be, browse the archives through the search function, and find the Weggie Map link at top of page so you can add yourself to it if you'd like.

    Welcome to you, too, sbeach78. You can also introduce yourself under New Member Introductions, accessible via the main Forum page, link at upper left of this page. Hope to hear more from you, too!
    Anne, dx'ed April 2011

  5. #5
    Join Date
    Mar 2014
    Posts
    199
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Hello everyone : I'm a newbie to the group !!

    My story ??
    Well my beautiful HUGE Neopolitan Mastiff ( 12 stone ) jumped on me and 1 paw landed on my nose about 2/3 years ago
    Massive nose bleed trip to A & E and nothing obviously broken so see how u go they said
    So my nose I was now aware of seemed to not be quite right , swelled & in an odd shape but I just put up with it & thought it would eventually go down . It didn't . After my gums went crazy sore & bright red a dental biopsy was taken and no obvious causeways found and my fingers /toes suffered cold badly. Asked to see an expert .
    The nose man said it was the worst nasal injury he had ever seen he couldn't think what to do so as a last resort recommended I saw the best nose man in the UK
    Thank God
    I explained what had happened and within 5 minutes the lovely amazing guy , at st thomas & st guys london David Roberts said NO THAT'S NOT YOUR DOG YOU HAVE AN AUTO IMMUME DISEASE : let's work out which so then referred me to Prof De La Cruz the best man in Europe
    It's Wegners he said !!

    And here I am
    Nasal destruction hence the saddle nose but kidneys / liver all good
    So MTX to get under control - starting this weekend
    And steroids antibiotics & vitamin d & frolic acids
    I can't wait till my nose looks normal & I can smell again ( a girl can dream )
    Have had a few rough days but feel confident I can beat / understand this disease


    Sent from my iPad using Tapatalk
    Last edited by Jayne 14; 06-05-2014 at 09:38 AM.

  6. #6
    Join Date
    Apr 2013
    Location
    Orlando, Fl
    Posts
    743
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the forum Jayne. I'm glad you were able to be treated by such excellent docs. We can all wish for that. Feel free to chime in whenever the mood strikes you. You can also ask question and rant. We respond to all with loving responses. Again welcome and sorry you had a reason to find us, but you'e in the best possible place.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  7. #7
    Join Date
    May 2014
    Location
    Ft Davis, TX
    Posts
    55
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hey Jayne,,,,haven't made any replies in a couple of days. Not feeling very well, but wanted to tell you thank you for your story. Your dog may have done you a very big favor because you might not have discovered WG as quickly.
    I am sorry that you have to live with this, but in a very short amount of time I have found this group to be very loving and supportive. They will encourage, love you, cheer you on, etc. We are each blessed in so many ways and I know that no matter how short or how long we have walked this road, we are on it together and there is always a bump along the way when we need someone else to just let us know that they understand I like your attitude and you just KEEP ON DREAMING

  8. #8
    Join Date
    May 2014
    Location
    Ft Davis, TX
    Posts
    55
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Thumbs up

    Hi SBeach....Welcome to you also. I am in the mountains of w Tx. I was diagnosed in 2009 after a yr of not knowing what was going on. It can be very overwhelming at first, especially if no one around you understands what you are going through, even yourself.
    I know you will find this forum to be a wonderful place of experience, knowledge, love compassion, encouragement, understanding, listening and faithfulness. You can be a person of many words or very few. You can be serious, funny, chatty, witty, critical and the list goes on. You just be who you are at any moment and everyone will be here for you!!
    Will be praying for you...wishing you a speedy remission!

  9. #9
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,714
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Jayne and welcome to the forum.
    I love the positive attitude and as Beverly said, thank goodness for your dog

    I'm glad you have been reading here for a while and therefore know what can and can't happen as this disease progresses.
    I hope that, with such wonderful on the ball doctors, you find yourself in remission in no time.

    We look forward to following your journey with WG
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  10. #10
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,914
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    It takes a while to deal with the denial.... At least it did for me. Somehow I kept thinking that things were going to change and get better. Things did sort of get better, but never back to the way I was 5 years ago. I miss those day (often), but I've adjusted to be semi-content to be able to do the things I want to do. However, I've had to adjust "the things I want" a bit, too. Some things, like hiking, backpacking, and other strenous things have had to be scratched off the list.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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
  •