Needed to find you guys for sooo long!!!

[im so blessed]

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 !

[Pete]

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.

[ozterry]

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.

[Rose]

. 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

[Jayne 14]

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



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[im so blessed]

. 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 :biggrin1:

[mishb]

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

Welcome aboard

[annekat]

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!

[NikkiNicole]

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.

[im so blessed]

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.

[Mas78]

Welcome to the forum.
I bet that if your doctor has referred you to somebody they trust then they will still consult with the new doctor if needed. I know that's what my Kidney doctor did two years ago when he switched over to the VA hospital.
And again, don't be afraid to ask any questions. Someone on here will be able to relate and give a helpful answer.

[annekat]

Don't worry, babbling is perfectly fine on here! Most of us have done it from time to time, and you will see MUCH longer ones than yours, the more you read on here. And where you posted is fine; New Members Introductions and Weggies Stories can both be used to introduce yourself and your experience with WG. There aren't too many wrong ways to use the forum, though you may be gently steered from time to time. There are some rules about not discussing religion and politics, and that is about it, or there may be others... those are posted somewhere that you can see on the main Forum page. Looking forward to hearing more from you!

[BookNut]

I am so glad you found this group. you will love them and learn so much and get SO much help. I was misdiagnosed with WG, found the group, and have stayed on because leaving is just unthinkable. So....congratulations on finding a great group. Wishing you all the best!

[gilders]

Welcome. Great story. Lot's of similarities with me. I was 17 when Wegener's first struck. Rheumatoid arthritis, vomiting blood, mis-diagnosis, failing kidneys, etc, etc were also what occurred at onset.
So good to hear you've got such a loving family and even with this illness you see yourself as blessed!

[im so blessed]

Welcome. Great story. Lot's of similarities with me. I was 17 when Wegener's first struck. Rheumatoid arthritis, vomiting blood, mis-diagnosis, failing kidneys, etc, etc were also what occurred at onset.
So good to hear you've got such a loving family and even with this illness you see yourself as blessed!

Hi! Ive been looking for someone closer to my age because i no its more common in older ppl. So now i now you are out there. I was just saying to my husband this morning that after reading post on here, i could die today and i feel as if i was blessed beyond what i deserve! When life itself is almost snached from you, you start to see little things as big blessings. Dont get me wrong...i dont always FEEL this way. But i no its true! So have u ever been off ur maintenance drugs?

[Bek Stone]

Welcome blessed I know exactly how you feel I only found this forum two weeks ago and I felt like crying to I was so happy and have been ever since I've found everyone on here helpful and supportive u don't have to feel alone anymore :-) I was also diagnosed young but not 16 I was 18 and that was 6 yrs ago so I can't imagine how alone you felt for 13 yrs!!! I know I did but ive only had WG for 6 but im so happy you found this site and im sure it will help :-) it has for me thats for sure

[gilders]

Hi! Ive been looking for someone closer to my age because i no its more common in older ppl. So now i now you are out there. I was just saying to my husband this morning that after reading post on here, i could die today and i feel as if i was blessed beyond what i deserve! When life itself is almost snached from you, you start to see little things as big blessings. Dont get me wrong...i dont always FEEL this way. But i no its true! So have u ever been off ur maintenance drugs?

Hi again. I've been on this forum for about a year now and, to be honest, from what I remember there is quite a few people that have joined after me that are either young, the parents of a youngster or were originally diagnosed quite young. I know 20 years ago when I was diagnosed, I was told told I was one of, if not THE, youngest person in the UK to have WG. I don't know how accurate that statement was, but I do think that generally a few years ago it was felt that Wegeners mostly presented itself from 40+ years, but I think now there is no real age at which it's likely to first appear.

As for being off maintenance drugs, the quick answer is YES!
The longer answer is that after first diagnosis I got in to remission, meds were tapered and eventually I was off maintenance drugs. Unfortunately I only lasted a week or two before I had my first relapse. I have always aimed to get off maintenance drugs after each relapse and have managed! More good news is that the periods between coming off my meds and the next relapse has grown each time. I'm currently on 10mg Pred and 100mg Azathioprine (Imuran) for a relapse that started 26 months ago and I expect to lower the dose on one of these tablets in January (slowly).

[im so blessed]

I manage to only need pred during my flares which have been almost every year. But i stay on imuran 100 and methotrexate 12.5 weekly straight thru. sometimes i wish i could give my system a break. but you know, its a balancing act. Glad its working that way for you !!!! o and yes. i was told the same thing about my age back in 2001. things must be changing. makes you wonder why.

[Ailish]

Hello,
I just joined too! I read your story, you are a miracle, you've been trough hardships, made it out, made the best of it and still going strong! Such an inspiration:biggrin: We all fight our own battles most of my friends and family don't fully understand mine, and I wouldn't want them to. I also felt so lonely and scared, I only read statistics and journals..now I registered here and see so many beautiful and inspiring people whom I can understand from reading even half of their sentence...

Thank you for sharing your story!
-Best wishes!:biggrin1: