New Weggie...!!!

[maria garcia]

Hey all, have been reading your posts for a while...Andrew got me in finally. I was diagnosed this August, 2011 with what appears at this point to be a limited version of WG...mostly in my sinuses, some nerve damage (dropped foot), and all the irritating symptoms. If a friend and my wife hadn't seen that I was not doing well in early August, I may not be here today. I contracted pneumonia & possible Valley Fever (live near PHX)...after a lung biopsy, scaring my wife & children pretty badly, the hospital I was in sent my tests to Mayo Clinic as they could not be sure of what was going on in my lungs. The Mayo pathologist diagnosed WG. Now Mayo is treating me (prednisone & Methotrexate)...the clinic is the best, I am the luckiest. Has not been fun, am interested in sharing and learning more as this journey progresses...as much as I can. My best to all...am looking forward to meeting some of you in here.

Don, welcome! Did you have wegs involvement in your lungs? Or pneumonia? My daughter also is taking MTX and prednisone. What are the mg you have been prescribed?

[Dirty Don]

Hi Maria, first of all, I've been reading your travails with your daughter...understood, I remember that age watching my ex and our daughter interact...and she wasn't ill. So, now you two have added WG to it...just remember, she needs you...in all respects..she won't admit it, you won't stop feeling badly, so the mix is not good...you need to step up for her, not for yourself...hang in there!! You both will be fine...

I had some kind of 'particulate matter' in my lungs which was the WG flare up that sent me to the hospital and surgery, blah blah blah. Docs thought it was pneumonia at first...acted like it, looked like it on Xrays, but when they went into my lungs, took some samples (yeah, YUK!), someone had the sense to 'sense' that pneumonia may not be at the root, so they sent the sample to Mayo...Mayo confirmed WG, so I, luckily, transferred over to Mayo once I was allowed out of the hospital that saved my life. So, now, what was in my lungs has pretty much cleared up, I'm on mtx and pred, low doses compared to some I've seen on here...lucky guy.

The best to you maria...the reason some of us can laugh is because we've known from the start that this disease is not curable, and the reactions to that have been many, many like yours, but ultimately we have to step up to accept the fact that we have this disease...it's too bad, not right especially in children, but someone has to step up and we have to do it for ourselves and for those who may not be able to do such...you will do that for your daughter, you are in fact, just being on here getting info is one of the best things you can do...love her, treat her, accept her...she'll eventually see your role model...you're the best Maria, hang in there!! Patience and persistence...

[maria garcia]

Thanks Don, it so frustrating bcse the more I step up the more she pushes me away and tells me to get away from her room etc. Im trying to give her space now and see if that works but I need to make sure she takes her meds everyttime I ask if she has taken her med she comes with a rude remark. Thank you for writing back. What are the mg of your meds?

[Dirty Don]

pred daily: 12.5mg, very low; mtx: 60mg weekly, all in 1 day...had to adjust dosage times to regulate side effects of mtx better. Oh, and folic acid to resupply the damage done be the mtx...jeez!

Ah, your daughter sounds soooooo teenaged!! LOL, I was an English teacher in high school, and coached too for 32 years...so I know teens pretty well...hehe! Which is to say, I don't know much!!! Give her room, but make sure she understands, in a practical way, in what kind of condition she is really in.

Be there when she falls, literally and figuratively...it's all you can do, she won't realize your efforts till later in life...remember yourself as a teen???? LOL, I do of myself, and I would have kicked my own butt several times!!! LOL...

Take care Maria...all will be well!