Re: JOAN SMILE

[Guest guest]

dear joan

you are scaring me, your comment, i want to go buy a gun, was frightening. you sound desperate. i wish very much i could call you and have a long chat. i too am struggling with some of the same feelings as you. hang on dear friend and you know they will pass.

it is so hard to feel like a shadow of old yourself for so very long, knowing it will always be this way. but if you try very hard to look beyond what you are going through, do this for me, becasue i am in the same place you are now, and if you try i will too, you will remember that you will come out of this place and remember that there is a new definition of you and your life with this illness. and that it is not all bad. it is just different. life goes on. we have already fought through the rough times, the initial acceptance, sure we revisit it over and over again every now and then, but we have to remember to use what we have learned the first time aroiund and all the times after that. so that we can come out of stronger and it wont be so bad each time.

we have talked so many times about not being able to do all the things we long to do, about how our definitions of what is normal have had to change. this is just the way it is, there is no point in looking back longingly and making ourselves upset. i have done that to myself since coming back home, and it has really done me in. what for?? there was no reason to do it, it has gotten me nowhere but a very dark place with red eyes (LLLOOOLLL), you know what you would be telling me, so take your own advice. instead of being upset about what we cant do we have to look for what we can do and find joy in it. we have to look for the positives in the changes in our lives. be glad that our lives our slower?? there is good in that. be glad that in the changes that have taken place in us through this illness. play the mind games with yourself joan. its the only way to get out of it. and if anyone aroiund you is bringing you down , to hell with them. dont let them. we have to let others deal with their acceptance of our illness and probelms on their own. i know it is hard for them as much as it is for us, but we can not take on their burdens as well as our own.

i love you, when we are settled in the house i will try to call you from here,

take care

kim

I'm sorry Kim...I don't want to scare you ... I know that was an absolutely horribly selfish thing to say to the members of this group who are struggling to survive ... I just fear a vegetative state in diapers with a fully functioning mind and unable to move ... I fear it so much. My father is so strong ... he is good for me to be around in the day ... he lets me talk but there is something about his personality that keeps me up ... he is always up ... he told me that I could live til 90 and never getting to the state I fear and would have wasted my life away worrying about something that may never happen. this made complete sense, but when you are in an irrationale state, you can't get to that knowledge on your own. Joe has been good too ... except when he didn't realize I was not well last week and was not calling him on purpose ... oh brother!!!...why would I do that?!?! I need help and guidance in the head game thing ... thank you for your words of wisdom ... they make sense ... but I can so quickly turn back to this state ... fortunately, I see my psychiatrist this week. But, I think all he will do is take meds away from me ... he doesn't think it's is good that I take xanax ... but, without them, I feel like I am jumping out of my skin!!! ... I suppose I am addicted to them now, but just like all the other meds, we need what we need to make us comfortable. that's all I ask ... I just want to be comfortable and clean every day ... I cannot get the at-home care again unless I develop cellulitis again ... or something that requires open-wound care of something of that nature...this is why my ins. co had the at-home care for me ... I was amazed the ins. co. was on top of this ... they saw I had cellulitis and set it up ... I enjoyed that ... had at home pt .. nursing care, and nurse's aid ... I felt safe with that and it was good to see people .. I am a people person, used to working with 5,000/day and 200 in my own group alone ... oh how I miss them so ... my friends I grew up with ... when I left on 4/22/04, I never imagined it woujld be the last day there ... I want to go back to just see them ... but it is a classified facility ... I will have to do this before I tell my boss to terminate me ....what a joyful but sad day this will be for me ...