First post - Hi from California!

[Melly]

Hey everyone, I'm Mel from San Diego. I'm 26 years old and was diagnosed at age 19 (early January of '07). I had mainly pulmonary and upper respiratory involvement, but my kidneys were also affected. Thankfully I didn't suffer any permanent damage, but I've had lingering sinus issues for the past 7 years and have almost completely lost my sense of smell at this point. Honestly, it's a gift and a curse. I work in a hospital and there are MANY smells that I'm glad I don't have to experience. Always look on the bright side, right? :P

But yeah, things were pretty rocky for a while and I feel like I'm only just now getting my life back on track. I'm sure you guys have been or (sadly) are currently going through that whole song and dance, so I'll say no more.

I'm looking forward to getting to know you all better. I was a member of a support forum when I was first diagnosed called wegenersnet, I believe, and it was one of the only things that kept me sane during that horrible period of severe disease activity.

Best health to you all!

[Debbie C]

Hi Melly and unfortunately welcome to the family. Since you are not new to this whole weggie thing u could probably tell us a thing or two. It's sad that you were diagnosed at such a young age but luckily you had some good drs. that knew what is was and caught it in time.You will find alot of support from around the world on here. And someone is usually here whenever you just want to talk. What meds are you on now? Don't you have to be careful working in the hosp. with everyone sick there or are you not around patients. Take care and again welcome !!

[pberggren1]

Welcome to the family Mel. We would love to hear your story.

[NikkiNicole]

Welcome to our unfortunate family. We'd love to hear your story. I think that helped me the most when going through my diagnostic process, reading the stories and knowing that there were others out there who had it worse than me, or that I wasn't alone.
I am sorry you have to go through this at your age (like I'm SO much older) but, you seem to have a very upbeat, positive attitude and I believe that goes a long way in our worlds.

[Melly]

Hi Debra, thanks for the welcome! Currently, I'm not on any medications. But here are all the medications I've been on at various stages in my treatment for WG: Cytoxan, Rituxan, Arava, prednisone, methylprednisolone, bactrim, intravenous immunoglobulins and Imuran. Not all those at once, though! Holy smokes, that'd suck. The very first two medications they put me on were Cytoxan and prednisone. They soon switched me to methylprednisolone instead of prednisone since apparently my body was unable to properly metabolize the prednisone and I responded much better to the methylpred. The doctor that diagnosed me was kind of a maverick, so he had me do a couple courses of Rituxan, which wasn't approved by the FDA for treatment of WG at the time (and was a total pain to try to get my insurance to cover, grr...) as well as Arava, which I don't think is a very common maintenance med for us Weggies even today, but it was kind of unheard of back when I was on it. Don't get me wrong, I'm intensely grateful to this doctor for saving my life since I know I didn't have much longer, but I felt like his guinea pig at times and it didn't sit well with me. Anyway, I switched over to Imuran once I changed Rheumatologists and was on that until December of last year.

I do have to be very very careful in the hospital, but I'm not as concerned about it now that I'm no longer on the immunosuppressants. There was a period during school that was very scary for me. I was doing 32 hours of clinical rotations at an intensely busy trauma hospital on top of going to school full time and being stressed constantly. I was pretty much a walking talking flare waiting to happen, but somehow I made it out okay! I got about two colds per semester, but I was practically in kissing distance of many of my patients during peak flu season and came out completely unscathed. Lucky! I'm an x-ray technologist, so yes, I get my hands on every single one of my patients. Good hygiene and being as vigilant as I can be plays a huge part in keeping myself healthy.

Sometimes I wonder if I'm not completely crazy for choosing this as my career, but I developed such a wonderful relationship with my x-ray tech when I was in the ICU. I mean yes, she did wake me up with her loud machine, flip all the blinding overhead lights on, shove a cold hard plate behind my back and then shine another light directly in my face every morning...but she was the happiest person in that whole hospital; a bright point in my day. I wanted to be that for someone else. I definitely think my experience allows me to relate to my patients in an entirely different way than many healthcare workers because that person in the hospital bed used to be ME. Helping other people is how I cope with the hand I've been dealt. If I can make a difference to someone in some small way, then I'm not wasting the second chance at life that I was given.

Phil, it's nice to meet you! I think I will write my story out sometime soon. It'll likely just be a massive wall of text, but it might be kind of therapeutic. The stories I've read so far have been very interesting to me. There's no story that's exactly like my own, but I can relate to every single one of them in some way all the same. That's why Weggie communities are so great.

Nikki! Nice to meet you, too. Honestly, I am glad that I was young when all this happened. Not only was my body able to physically recover and repair pretty quickly with no permanent damage, but the entire experience changed me as a person and I know the changes were for the better. You're around my age, I take it? What has your experience been like? I don't know many Weggies in the same age bracket, so I'm always anxious to pick their brains whenever I find one!

[NikkiNicole]

Well, I'm a wee bit older (34) and was diagnosed at the end of last July. I don't feel like I'm that old (well physically I do but mentally I'm still very much a kid). I had a not so great team of doctors in the beginning who treated me like this was all in my head or a search for pain meds. But, I switched my team up and they looked in the right places and found what they were looking for and cancer too.
Cancer is almost 1 year in remission and I am hoping it stays that way and Wegener's is sort of asleep. I still feel like I'm swimming up stream every day but ... I'm pushing forward.

[Melly]

I can't tell you how many times I was misdiagnosed. I had symptoms for 5 years and it seemed like I had to progress almost to the point where I was on death's doorstep before someone finally started to really look for answers. It's so frustrating having people tell you you're fine when you know something is wrong. One of the biggest problems that I see in medicine today are apathetic doctors that don't simply listen to their patients.

I'm glad you finally found some professionals that got you the care you needed. For a long time I felt like I was stuck in this deep dark hole with no way out, but it gets better with time. It sounds corny, but part of it is just believing that there will come a day when all of this is behind you and not accepting defeat. And one of the hardest lessons I had to learn was to go easy on myself. My mind had all this drive and all this energy...but for a while my body was just not able to physically keep up. Never mark your calendar in pen because you don't know (especially in those early stages) what any given day will bring. Be flexible and be kind to yourself when you don't quiiiiite meet your own expectations. If you're pushing forward, you're doing it right!

[Debbie C]

Melly,how long have u been med free. You are not taking any maintance drugs drugs at all ?

[annekat]

Welcome, Melly! You are a great addition to our forum. Your story, what you've told so far, is interesting, and we'd be glad to hear any more of it, and it's OK if it is a wall of words! You obviously have a thing or two to teach some of us, having had WG for several years. And every story is different, with threads of similarity running through them.

Everyone else has given great responses, so I'll leave it at that, but I hope to hear more from you and that you will join in many of our discussions.

[windchime]

Welcome to the forum Melly. I think there are a few your age around. I'm sure they'll chime in soon. Sounds like you had a rough few years, I'm glad things have evened out for you. Your attitude is so positive and upbeat and that's great. Keep it up. Love it!!