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Hello John

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Posted 7/6/2008 4:48 AM (GMT 0)
John you are not going to believe this. I was just thinking about you and wondering how you are. And then I see you online. I don't believe in coincidences. I believe things happen for a reason.

In fact I was thinking about all of members who have this disease and was trying to come up with a thread just for you guys. Like a check in type thread just so the we know that you're okay.
When caregivers don't post for a while we know that they are real busy taking care of their loved one. But when the patient members themselves do not post for awhile it's like I sure hope that they are doing okay and not in the hospital, unless it's for a transplant.
I sure could use some ideas here for the thread.

Have a good evening.........smurf
Posted 7/6/2008 6:03 AM (GMT 0)
Hi Pink Grandma (my PG-rated friend),

Thanks for the holler. It's too late tonight, or too early this morning, for any ideas to spring from my feeble mind but I'll think on the thread idea. I'm sure that some ideas will be forthcoming from the other more experienced members.

Overall, I'm doing well. I try to peek in on the forum every day but often find that I have nothing of value to add.

My friends have been great, trying to keep me social and active and feeling somewhat normal. We had a 4th-of-July party at my house. They handled 95% of the work so I had very little prep or shopping to do. That was a good thing since the disease kicked my behind for that last couple of days. We BBQ-ed on the roof deck and watched a few large firework shows and the usual beach fireworks. Thankfully it broke up early, but not before a friend entertained with some hot guitar playing, and after we enjoyed a sauna . Again, a good thing since I was very tired and require 'alone time' when I'm hurting. Still I didn't get to sleep until 7:30 am and woke too soon at 9 am. An afternoon nap saved me.

I think that I posted that I had met with the transplant clinic head and we had the 'reality check' discussion. A friend came along so the real discussion would be known, and not just my muddled version.

I was sorry to read your post to Butterfly. It isn't fair to do so much caregiving and get abused along the way, even knowing that it is one of the disease's symptoms. I hope that you can resolve your painful feelings (how very psychological sounding) and put that pain behind you. We all know how much caring you have and we want you to have unbounded happiness in your life.

Be well, John
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