diagnosed Jan 2009 also

[coffeelover]

Hello,

My name is Lisa and I have recently been diagnosed with limited WG. I have been having trouble with pain and inflamation for 15 years, but was treated for arthritis with aspirin type pills.
This past spring and summer I started to havie trouble breathing and by fall it was determined that my trachea was the size of a straw and not a quarter like it should be. Since then, I have had three surgeries to correct the inflamation, but the ENT's were still not sure what caused it. I have a temporary trach in (four months now) because the doctors are unsure of the reason for this problem.
I recently change rheumatologists and she immediately did some blood work and determined that I have limited WG. (only affecting the trachea at this time). She has put me on mexoptrexate and I continue with the prednisone that I have been on since surgery. I will go back to have further blood work done next month and I see the ENT tomorrow (thursday the 26th). My breathing is much better and I very much would like to get rid of the trach, although it really causes me very little discomfort and I am able to do everything I used to do without it. The most problematic for me is the prednisone cheeks. I really dislike looking myself in the mirror and seeing those puffed out cheeks.
My attitude fluctuates from acceptance to sadness. I know this is manageable and so far has not limited me in my daily activities, BUT I get some times where I want to be "normal".
It is nice to have a forum like this to vent on and hear other peoples stories.
LIsa coffeelover

[crackers]

hi lisa and welcome.i know exactly what you mean about the pred cheeks.i got out of bed one morning and this stranger was staring back at me in the mirror.i was immediately nicknamed mr potato head.just as well i've got a sense of humour.i'm afraid "normal" is not a word it's a distant memory like happy childhood photos in an album.wow where did that come from.me waxing lyrical,must be the meds.anyway once again welcome and keep in touch.help and advice,if needed is available here from good people.
john

[Jack]

A combination of reduced steroids and just getting used to it sorted out my self image problems. I just started to accept myself as a fat bloke. I then started to lose weight a few years ago for reasons as yet unknown. Unfortunately, this has left me looking worse than before with a bony appearance and loose skin.

Be careful what you wish for!

[coffeelover]

Thanks for putting it in perspective. I have joined weight watchers (again) and am eating better for me foods, so that should help to some extent....but the cheeks will always be there while on the pred.
I think they should have a smiley pred face on the icons???? ha ha
Lisa Coffeelover

[coffeelover]

I do not call myself potato head (although that is a good one) I call myself chipmunck and a friend sent me the chipmunck songs on face book. I guess I need that sense of humor you talk about. Thanks
LIsa Coffeelover

[Sangye]

Hi Lisa, I'm glad you found this forum. Let us know how the ENT visit goes today. As far as emotional fluctuations-- have compassion for yourself, as you would if you were watching someone else go through this. It's hard to lose control of our appearance! A sense of humor is indispensable as well. Sounds like you've got both.

[coffeelover]

Sangye,

Thanks for writing. My ENT appt went well today. She wants me to keep the trach in for three more months, making it 6 months from my last surgery date, just to be sure. I was hoping for two months tops, but am glad to have an END in sight. Thanks for asking. I am breathing well, so that aspect is taken care of for now. I just hope I do not have to go through this again.
So, if I have to wait an extrar month...so be it.
I am going to read your blog. It sounds interesting.
LIsa Coffeelover

[RCOSSIO]

Don't worry my wife painted my face orange and put me on a windowsill with a candle on my head and calls me Jack!!!

[andrew]

I think they should have a smiley pred face on the icons???? ha ha
Lisa Coffeelover

Hmmmmm.....<rubs chin thoughtfully>. The newest forum member has given the oldest forum member an idea

Hi Lisa and welcome! Yeah, the pred-head is a necessary evil. Like Crackers, mine came on suddenly on a 'red-eye' plane flight. I got up after a less then comfortable sleep in economy, went to the bathroom, looked in the mirror and thought that there must be someone else in there with me that had a really weird looking face

You mention wanting to be 'normal'. Yeah, it would be great but many times it's a case of getting used to the 'new normal' as I'm sure you're noticing. Glad to have you aboard and feel free to vent any ol' time!

[coffeelover]

funny. thanks for the words of advice regarding normalcy.