This is a thread for those who have not posted recently and want to update

[coffeelover]

3/20/10
hello from Lisa (coffeelover) I am so sorry I have not been on fro a while. Busy, busy and some complications.
Last time I posted over one or two months ago....I was heading towards remission and tapering off the prednisone. well....unfortunately that was a short lived "remission" and after three weeks off pred, I was suffering from pain all over, having trouble breathing and suffered from general fatigue.
But, I ignored all these symptoms (the mind is an amazing thing) and did not make sense of the symptoms until I had my regular appt with tne ENT at Mayo in Rochester, MN. He promptly told me that I appeared to be developing stenosis in my trachea again and I should make sure my EnT in Mankato who did my original surgery should be at my beckon call. WOW! Talk about a wake up call!
I immediately scheduled appts with my ENT, Rhematologist and GP.
After a week of activity with doctors and after feeling sorry for myself that this disease did not actually disappear......I am now back on track with higher doses of prednisone and mexotrexate, but actually doing fine. I had a PFT test that indicated my trachea is not at the danger level for stenosis, not perfect, but still good. I will see my rhuemy again this next week and promise not to beg to reduce the prednisone. It is truely what keeps me from getting another trach put in and for that I am grateful.
I plan to have "cosmetic" surgery to get rid of the trach scar. I am finally ready to have another surgery and while she (my ENT surgeon) she is going to check the trachea just to be sure.
So yes....prednisone stinks! Yes,......I hate the yucky feeling I have the night I take the mexotrexate....and yes....I prefer not to be sick...but I have now come to more of an acceptance of the disease.
If you take anything thing from this rambling message...do not ignore symptoms ...get "em checked out and take the drugs as the doctor prescribes. LIfe is GOOD!
I will try to read through some of the thread since I have been absent, but I know for a fact that I will miss out on quite a bit becuase of my absense and I hope to not be gone so long this time.
Lisa Coffeelover (still drinking that one GOOD cup of coffee a day and then some......)

[Sangye]

Oh Lisa, I'm sorry this stupid disease bit you again. I'm glad they caught it in time, though. We've gotten a lot of new members since you've been on. So many wonderful people to get to know! Glad to hear you're keeping the coffee at one cup.

[pberggren1]

Oh Lisa!

Thank God you have good doctors!

I was thinking of you last week and thought that you must be doing fairly well health wise and probably very busy at work.

I should have sent you an e-mail long ago to see how you were doing.

[JanW]

Hey, Lisa -- I was thinking about you after my SS surgery and wondering how you were doing; thanks for posting. I forget now -- did you have your windpipe surgically dilated as well?

[moyan]

Hi Lisa, bad & good news, nice to see you back, such a comfort to have this site.

[elephant]

Hi Lisa, sorry to hear about your symtoms but glad you are alive! We missed you!

[patricia]

Hi Lis, Im new my name is patricia Sorry to hear about what happend. Just stay focus and take it one day at a time. dont get to over welmed.
I am havingtrouble getting bck on this site to where i posted this morning. i was to do with new comers help please thanks

[Doug]

Welcome back, Lisa, if for the wrong reasons. I've been off myself for awhile (the forum ~ you guys are such characters!), only to catch up with your news. Take care, listen to Dennis and your doctors.

[Cindy M]

Hi Lisa, I also am guilty of being off the site for quite a while. I am sorry things didn't work out better for you but you. I have been spending a bit more time here just trying to catch up but alot of information to go through. Wishing you the best.

[jola57]

Hi Lisa, I hope that the pred and mtx does its thing. You were just like me, 3 weeks after tapering I was bleeding from the lungs. they put me back on cyclo for 12 months. I am glad the surgery is holding and you can get the scarring taken care of.