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 !