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bartlesher
03-04-2009, 03:41 AM
Hi. My name is Sheryl and I was diagnosed with Wegener's in 1984 at the age of 19. I had been sick with horrible ear and sinus "infections" for 2 years. I had a Dr ask me how long I had been snorting cocaine because the inside of my nose was so destroyed. After multiple trips to the Dr and barely able to stand up on my own, my mother convinced the Dr to admit me to the hospital. When they admitted me, they did a routine chest x-ray where they found multiple spots on my lungs. Apparently they then decided that this wasn't all in my head (no pun intended!:)). They performed both a sinus and lung biopsy and the diagnosis was made.

I have been treated over the years with Cytoxan, Methotrexate, Imuran and Prednisone. I am in remission for a couple years and then flare again. Even in remission, I still have lots of pain in my joints and my head. It is very frustrating!

The miracle of the story is, I was able to deliver 2 perfectly healthy children after taking Cytoxan multiple times! They are now 18 and 21 and are the joy of my life. And my other babies....4 dogs! A yellow lab, golden retriever mix, pomerian-bischon, and yorkie! They are all very spoiled!!

Unfortunately, my first husband didn't deal with the WG very well. We divorced after 16 years of marriage. I am now married to a wonderful man named Andy and we will have our 5 year anniversary in May. Although he doesn't understand the disease very well, he is very supportive.

My mom and dad have been my rock throughout the years. Unfortunately, my mom was just diagnosed with cancer and began chemo treatments about a month ago. Now it is my turn to be there for her!

I think that's about all. Have a great day!
Sheryl

crackers
03-04-2009, 04:49 AM
hi sheryl and welcome.
getting the diagnosis can be the hardest part with WG once you've got that at least you can get some meds to relieve the symptoms.it's a shame about your first husband but WG doesn't just affect you it affects everyone around you.i started xmas 2006 and at the time was working two jobs very fit and healthy even at 54.my wife works shifts at the local hospital so i was doing the shopping and the cooking and anything else that needed doing.now i can barely walk 50 yards.thank goodness for my wife sue.she has been absolutely brilliant,even putting up with my mood swings when frustration sets in about how restricted i am at what i can't do.things that i used to take for granted like walking the dogs.we have two,a mini schnauzer called holly who is 2 1/2 and a german shepherd called bailey who is 9 months old.despite the huge difference in size they are best buddies.sorry to hear about your mum.while i was undergoing tests related to WG in sept 2007 they found a tumour in my bowel but after surgery and 6 months of chemo i'm still here and things are looking good.i know it's a scary time but with treatment and a positive outlook a good outcome is more than possible.anyway come back and visit us soon. it does you good to chat to people who know exactly what you're talking about.
john

Sangye
03-04-2009, 05:10 AM
Hi Sheryl,
Wow-- 25 years with Wegs. We should give you a gold watch or something. (maybe a gold lung would be more appropriate)

I'm so sorry to hear about your mom. I hope her treatment works great and she gets cured and strong very soon.

Looks like a bunch of us have dogs. We are a group within a group-- Pawsitive Weggies? :rolleyes:

bartlesher
03-04-2009, 05:47 AM
I love it! Pawsitive Weggies!

Yes, living with WG for 25 years has been challenging! I have my good days and bad days. I know it is better if I stay positive but some days I just can't do it. On those days, I usually hybernate, give myself a swift kick in the butt and get on with it!

mikecaven
03-05-2009, 10:51 AM
FYI...one year ago I came out of remission after being disease-free for 27 years. I have been on Cytoxan and Prednisone since last April and just came off of Prednisone. Dr. John Cush is treating me and plans on me staying on 150 mg of Cytoxan until June. I appear to have zero symptoms "again"...but did get a little kidney damage this time. I am actually feeling normal again...so I guess I am blessed. I just joined this forum. Good luck to all.

Sangye
03-05-2009, 11:15 AM
Nice to meet you, Mike. I never realized how many people out there have had Wegs for so long. Gives me hope. Especially your story, knowing it can just "go away" like that at all, much less for a whopping 27 years.

I hope this last stint is the last time it rears its ugly head at ya...