A Personal Issue - Good News

Trixie

Trixie

Moderator
Staff member
Well, there are so many people on here who know that I have a medical condition, Lymphangioleiomyomatosis, and have been worried about me, I felt it was easier to post this here than tell everyone individually.

I just got home from the National Institutes of Health (NIH) where they are researching this disease. I've been going for 4 years now.

Basically, all my numbers are still stable. Which is really good news. This means my disease has not progressed in any significant way. In fact, my bone density has actually improved since my last visit last year.

The bad news is I probably won't get to go there again.... funding has been cut, and since I'm stable, there really isn't anything they think they will need to see me for. It's kinda sad, as I've really become attached to a lot of the doctors and nurses there whom I see over and over again.

Anyway, it's gonna take me a while to catch up here and see what I've missed (even though every bed has a computer and tv, mine, of course, was not working so I've been going through internet withdrawal. :eek:
 
Great news....and not so great news. I know that NIH must have felt like a crutch and now you are off it, will feel a little wobbly, but once you get over that "lost" feeling, I believe you will continue to improve. (And if you'd quit that other habit, you feel even better!!!! OK...off soapbox!)

Get some rest and get back to 'work', Sharon!!
 
A few months ago I broke up with a girl I dated for 3 years, and although I knew the breakup was a while coming so I wasn't heart broken or anything, I found a I had a lot of free time. So to both cheer myself up and kill some time I took to downloading every episode of my favorite comedy shows and stand up comedian's acts as well as funny movies. BitTorrent is a great way to do that if you have some free time.
 
Glad to hear that you're doing well and glad to have you back here Sharon.
 
Sharon, definitely glad your back in the swing of things, and I hope you continue good progress. I hope the new set of gears, the beer and good companionship at the Michigan meet assisted you. It was certainly my pleasure to finally have met you, and look forward to doing it again next summer.
 
Sharon, I am glad you are doing better.

From personal experience I know it is tough to have a rare disease.

It is awful, that the money is so tight in this country now when it comes to medical and scientific research.
 
Thank you everyone. And thanks for the New Year's wishes Steve! Actually the rabbi came to my room and blew the shofar for me and said a prayer, and I think it's a comfort that the New Year will be a happy and healthy one, hopefully for everyone!

And yes, Charlie, the support of my friends is hugely important to me and my health. I believe I have a wonderful support system, which includes my "family" here. It keeps my spirits up, and keeps me going and laughing.

Alexander, you're absolutely right, rare diseases are difficult. And it is a shame that funding gets cut for research, especially just as significant progress is being made.
 
Good news Sharon and lets hope there's great news to come.

I bet it took almost all of the 4 years to learn to spell what's ailing you.
 
Great find JP. Well, part of the issue is that the employees there are all government employees, and not increasing funding equals a cut in the money available for research. I wish that had some subtotals.
 
Glad to hear you're doing well Sharon, and it was sure great to see you at the meets this year!
 
I'm glad things are moving in a positive direction for you. You've been a real asset to our club and have helped me on occasion. Thank you and best wishes.
 
Glad to hear youa re doing well. I bet the doctors and nurses there would be happy to get an email from you once in a while.

-David
 
I'm glad to hear you are doing well Sharon and I hope you continue to do well. Its a shame our health care system is such, it should be so much better...... :(
 
I care too!! :) Glad to hear you are improving Sharon, sorry to hear you are loosing some of your friends to politics and money. Keep your head up and think positive, the mind can do wonders!

J
 
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