new to support group hopefully I am posting correctly

[cjhnsn29]

I hope I am posting correctly. I am trying to post comments, and hope to hear everyone and how they cope with WG.

[Dirty Don]

Welcome cj...yes, you posted correctly. We'd love to hear about you and your 'version' of WG...that's how we learn on here: sharing. Best to you.

[cjhnsn29]

Thx D.Don I appreciate you letting me know that I am on the right track:wink1:. I have was glad to see that there was a support group on here. I am sure that my stories are similar to most WG? If you don't mind how long have you had this WG?

[Dirty Don]

how long have you had this WG?

Am now in midst of 3rd anniversary since dx...sighs...again...for effect...LOL! I have one of the less affective cases you'll read about on here...have been lucky, have followed all my protocols (fairly closely!! coffee anyone???), become healthier physically, reduced stress considerably, maintained good numbers...feeling pretty well right now! Oh yeah, my putting has improved also...hmmm.

[cjhnsn29]

I am glad you are feeling well. I have already had 6 sinuse surgerys and had a mass removed from my lung area. My SED rate has been in the 100's. I had to have reconstruction surgery thru my mouth. ANCA didnt show a lot. I ended up getting staff also in my sinuse due to the WG. The WG and the staphylococcus in my sinuse ate alot of the cartridge and bone away. Now I have a dip in my nose. I was on the Prednisone for a long time, now I am on methrotrextate which is use for cancer patients. During all this I ended up with HBP along with Anemia so far. I have severe pain on and off. I wake up every morning with pain. Not sure if anyone else has all these problems. WG makes me tired does anyone else have this problem? I have been on pic line IVs for 6months to control all the flare ups. I some how stay positive attitude wise. Everyone says they don't know if they can handle it as well as I do. I look at them and say it doesn't pay to be miserable and unhappy. I was dealt this hand for a reason. Does anyone else have trouble sleeping at times? I also recently lost 41 pds and keep loosing. I hope that I didnt say to much but I really need to talk to other people with WG... Thx for listing to me. I really am thank full to have found a group. Mine is so advance they can control it only. My WG is starting to spread. It really gets old sometimes and u do get done at times. I believe when others have WG they can relate better. Sorry I wrote a 5 chapter book but some said they wanted my WG symptoms. Now don't block me due to my WG book LOL. Thx again who all that reads this... C.J

[gilders]

Hi C.J
You definitely didn't write too much. You did well keeping in nice and concise! Wegeners can cause so many symptoms it's hard to describe what you're going through in a few sentences.
The worst thing I find about this illness is the way it has taken away my overall fitness, energy and strength. To a certain extent you can learn to live with pain, but when you have no energy there's not much you can do about it.
I'm pleased that you have a positive attitude. For days when you're not so positive there's always this forum for you to vent your frustration. There's almost always someone online, after all we're a worldwide forum and most of have trouble getting a good night's sleep.

[Dirty Don]

cj, what you just said is exactly what this blog is about! As it should be...anyway, one can NEVER say too much about this disease...the more said, the more learned. All of us contribute as much as feels necessary, and, more importantly, almost all of us take away something almost every time we come on here. It helps us learn what to ask of the docs, collaborate on decisions about OUR bodies, and feel like we have the upper hand on something that no one really has a hold on for sure. Keep contributing, asking questions, making observations...it is really good for one! Best to you, keep at it, you've got a handful for sure and I hope you have WG docs who are on top of this. You're still in a phase where WG is ugly and seemingly uncontrollable, so it's very important that you follow the prescribed protocols and keep your self as physically and emotionally stable as you can. You WILL get the upper hand on this...

[cjhnsn29]

Thx for all the feedback, it really does help knowing that you are not alone. Sure families are great and understanding most of the time, it y really hard to understand unless you have WG. There are days when you want to give up but that's not me. I have been taken out of work because of this WG.and all the meds and problems. That's hard because I am a people person. They say everything happens for a reason. And God only gives what you can handle. Dang please move on LOL... He must have a lot of faith in me.... :)

[Titus3:2]

CJ,I hope you don't mind me asking.Did GPA cause damage to the roof of your mouth or soft palate?Keith.