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I found this site about a month ago, excited that there really were others out there who knew what it was like to deal day to day with this disease. A wonderful concept to share with others, and yet I'm so terrible about sharing. Unfortunately I was raised that 'no one wants to hear you complain' (no one seemed to want to hear much of anything) . . . and so for 20 years I've been "Just Fine, Thank You". Well, today, for the first time . . . I don't want to put on my Just Fine, perky face. Lucky you. ;)

As time passes I find myself having less and less ambition. I fight with myself; do I blame it on depression, brain fog . . . or am I really just a lazy oaf? Friends seem to think that because I don't work I should just be able to hop in my car at any given time, go shop, party, visit, play . . . . and they don't seem to accept or understand when I'm tired, or just don't want to. My big fear . . . I've already been 'warned' once that if I didn't find more people to accompany me to my appointments at the transplant hospital, the team would be unlikely to transplant me for lack of support. I hate to ask people to go, it's certainly not like I'm asking them to do something fun . . . there's also been a couple of people I gave up on after feeling as though I was inconviencing them. Family . . . I really don't have one to speak of, so my destiny truly is in the hands of my friends.

Lately I've found myself stammering mid sentence for words . . . there buried in my head, I know that I know them, and they don't come out for seconds . . . I've even caught myself stuttering. When I fix coffee for two different people, I mix up the recipes and have to make fresh coffee and start again. Thank god my dog barks to come in, she'd be a pupsicle in the snow. I guess I'm actually starting to get scared. People talk about where there gonna be in five years, and I wonder who I'll be, or . . . if I'll be in five years.

I feel so inadequate, depending on the generosity of friends the last several years for a place to live. Right now the woman I live with has to move, and she struggles herself with an autoimmune disease. Although she's able to work, she gets just as tired as I do when she's home. I feel useless, here she's opened her home to me, and I have no means to help her in her time of need. I think this is what I struggle most with. I was self sustaining from the time I was about 16, and was always able to take care of a friend in need. Now the table has turned, and I'm really not sure how to cope.

I guess I feel a little better just having typed that all out. Thanks to anyone who took the time to read.

Kimberlee*

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