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Thread: Needed to find you guys for sooo long!!!

  1. #1
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    Default Needed to find you guys for sooo long!!!

    Dear fellow weggies,
    Wow,so here goes EVERYTHING! I have felt so alone for 13 years now. Cant believe i finally found this.I feel like crying...im not a dramatic person as you can tell..sarcastic either. So. I am 30 years old. I was diagnosed with wegeners when i was 16. Wow how scary! It took 6 months to find my dx after many many tests. I started out with a bright red eye. Sinus infection after sinus infection that would not respond to antibiotics. And then the arthritic pain in my knees to the point that i couldnt walk at the end of the day. ER trip after er trip. several mis dxs,-growing pains, maybe it was all in my head !? When i woke up one morning to vomiting blood my mom w me as stopping at nothing. We drove 2 hrs that day to see a ruematologist and we didnt even have an appointment. Just an intensly concerned mom.I was addmitted for 4 days and had test after test. my sed rate was 120 and my anca around 60. i had a kidney biopsy and found out my kidneys were within weeks of failing. i was told all the scary stuff ofcoarse so when they came up with wegeners i was very relieved. mostly because i had no idea what it was. i went thru 6 months of cytoxen alongside my new best friend prednisone.I am being sarcastic. that stuff did its job...and even more than we asked. i was on 60mg a day for 3 months and gained 60 lbs. i was 16 remember. i was told no babies. its been such a ride. my body responded so well to treatment that my dr. thought maybe i would stay in remission. in the next 10 years i had a flare almost every year. never as severe as the first. mostly showing up thru arthritis. treated with pred. i have not been off my immunosuppresents in the whole 13 years. after about 7 years of immuran i had to add methotrexate. i take them together now. about 3 years ago i had to start injections of the methotrexate because i had a stanosis right below my voice box. it had gone on for months and i thought it was just haorsness from winter. so there was alot of scarring. now i breathe thru 60 % of my windpipe. 7 years ago i took a helicopter ride. not funny. long story but i was life flighted and in icu for 10 days. i had a brain bleed. they say totally unrelated to wegeners. i had a hard time believing that..but i had learned to trust my doctor. btw if you have wegeners you have to have a dr you can trust !!!! wow im sorry guys but ive needed this for soooo long. i no its getting long. i havnt even got to my blessings yet. life itself after all this. when i was about 20 i married the love of my life and he is the best man you will ever meet. he has stood by me through all my ups and downs. i know he will never give up on me ! and despite what the dr.s thought at age 22 i gave birth to a little miracle! hes 8 now and sitting by my side amused that i called him that. but he knows it. we fought the dr for just one more and when i was 26 we had a little brother for our first. i could stop here and you can see that i am sooo blessed. life is by no means easy...i rejoice when i have a good day. i rarely feel good. but im alive and surrounded by people who love me...and i have people to love. what more can i ask for...i am so blessed !

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    Welcome to the forum!! You've had quite a journey. There will be some women who will want to learn more about your pregnancies. Lots of good people on here (24/7/365) who can share experience, advice, or virtual hugs.
    Last edited by Pete; 11-29-2014 at 12:50 PM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Hi and welcome. What a story! You will find, as Pete said, many a kindred spirit and lots of shared support whenever you need it.

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    . I am so glad you found us and welcome to our family. You will feel less alone with this disease from this day forth. Here you will find understanding of what you have gone through and going through. I hope with our combined knowledge and experience we can help each other on this journey with this horrible disease. Sorry that it struck you at such a young age but really happy that you were able to have your children and I can feel the joy in you writing that they bring you.

    Rose

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    Welcome welcome welcome
    This is where you need to be , help , advice & people who truly understand how / what / why you feel as you do
    Congrats on your 2 beautiful gifts



    Sent from my iPad using Tapatalk

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    Default I need a tissue, please!

    Quote Originally Posted by Rose View Post
    . I am so glad you found us and welcome to our family. You will feel less alone with this disease from this day forth. Here you will find understanding of what you have gone through and going through. I hope with our combined knowledge and experience we can help each other on this journey with this horrible disease. Sorry that it struck you at such a young age but really happy that you were able to have your children and I can feel the joy in you writing that they bring you.

    Rose
    Thankyou so much!!! Im new to this so dont no all the ropes...this is to all who read my blubber and responded

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    You certainly are blessed - as we all are to have you here.
    I'm so glad you finally found us.

    Welcome aboard
    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

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    Welcome, Blessed! It brings tears to my eyes to think of how you must feel finding us after all these years, and how you have made it through having WG on your own all this time. I've had the benefit of this forum since right before I was diagnosed in 2011. It really makes a difference! I'm so glad you found us and hope you will be on here often. And yes, women are always assuming that they can't have babies if they take CTX, and I know nothing about that, but I'm glad you are here to tell them it is definitely possible!
    Anne, dx'ed April 2011

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    Welcome welcome welcome!!!
    This site saved my sanity during the diagnosis process. When I first heard of Wegener's, I googled it and though I was going to die within 2-5 years. Then, I stumbled upon this site and started reading voraciously about everyone's stories and seeing how people had triumphed through the darkest of days. I was so happy to have found it. You will find that there is someone, or lots of someones, who have been through what you've been through in one way or another and ... you'll learn more than you ever thought possible.
    Best of all ... you'll never ever ever be alone in this again. Not that you said you were but ... you'll feel weird about something and come here and someone will know something about it to ease your fears.
    You have come to the best place for people with Wegs. I truly believe that.

    Glad to have you here ... not that I am glad you're suffering like us, but I am glad you found us.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  10. #10
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    Thanks so much to all of you! I have said so many times over the years that i feel so alone and i just wish i could connect with SOMEONE ! I know now i wont have to feel that again. I spent alot of time today reading old post and WOW !!! Phils story had me bawling my eyes out. I cannot imagine losing the love of your life! I know that life is a journey and we all have different stories. But one common bond.
    You all might get sick of me for awhile since i feel like i have an outlet finally. I will try and behave . I did want to see if there is anyone out there with WG that has an endometrioma on a c- cection scar. Maybe that question should be posted somewhere else? And also i feel as if i have never really reached a spot where my WG was quiet for very long. In 13 years i have had at least 10. Mostly arthritic, some sinus. And recently a stinosis by my vocal chords. Anyway Ive taken imuran and methotrexate the last 7 years together. At my last doctor visit she told me to go home and research rituxan.She said she has a pt that did ivs one time and has been in remission for several years. So i did a little research and it sounded very scary to me ! wondering if anyone has thoughts on that ? please tell me if im posting this in the wrong spot.
    I had the best dr ever my entire sickness until my last app in september. She told me shes moving on to be a director of pediatric doctors in the hospital. I cried alot that day. Kinda felt like the air was Knocked out of me. I really trusted her to help me make the best decisions. Anyway, she put me in with someone she trusts. So now after 13 years i will see a new doctor. Sometimes i just wonder if i need to change my meds up a bit and see if it could get better. But thats taking a risk. I think because i was dxed so young it was all so scary and maybe im still afraid of risks. Wish i would have looked for you all sooner ! Think i babbled enough for this one...more later.

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