April 2, 2007 at 3:44 pm

i lost a very good friend when i was going through my i.v.i.g. and chemo. treatments. i had a friend of over 35 years. we didn’t live close, but we spoke on the phone all the time and visited eachother as often as possible. when i knew she was coming to visit me in the height of my treatment, i warned her that i may not be the same person physically, but i’m ‘STILL ME” inside. well, when she saw me, she got very quiet and now, almost 5 1/2 years later, she won’t take my calls or have anything to do with me. i guess that’s the true definition of a “toxic friend”. unfortunately, they do exist.
stay well,


April 2, 2007 at 1:08 am

Ever since high school, it seems as though I had many “close friends” but no best friends. Well, I would call some of my friends best friends at different times, but I knew that they really weren’t. I think the problem comes in when one doesn’t make the quick recovery, as in some illnesses; or they don’t understand what the illness is at all, such as in the case with GBS or CIDP.

Cancer: one gets chemo and/or radiation & either you live or you die. Plain & simple. But with illnesses where one gets ill, then takes a very long time to get better, but never well, it is just too hard to comprehend. Or maybe they do actually understand, but are afraid of having to help someone out indefinitely? I got so many flower arrangements & so many get well cards for the first year that it was unreal. I was too sick then to even care. They even took a collection up at work for teachers to sign up to make meals once I got home, or to donate to a fund for take-out. Our old church sent generous collections twice. These things I remember very well, & we sent nice thank you notes.

But as time goes on & we don’t get better, it is usually pretty much up to the family to pick up the slack of the ill person. And fortunately, I had the kind of family who could do that. I really feel for those of you who are trying to face this all alone. Ironically, I still am friends with the same people, although it is usually in the form of chatting on the phone more, rather than seeing them in person. I am careful not to talk about my illness, as they want things to be the way they were. That is fine with me, I guess no one wants to listen to other people’s problems.

I often wonder how I would be if the same thing had happened to one of my friends, & I have to admit probably not all that much different. At the time I got sick, I had two left in college, was teaching full-time, had a 4 story house to clean, had to cook a decent dinner every night, do all of the wash, etc. I remember being very tired myself in the evenings at age 48, & I was well then. Maybe we should really think about how we would all react if this happened to someone who was a close friend, but not a best friend.

I have met a whole new circle of friends from being in the same water aerobics class for two years now. We visit before & after class in the locker room & the hot tub, & a bunch of us go out to coffee after class. In a way I like that they never knew me before my illness, as the expectations are less (I don’t have to be the funny person with so much energy all of the time.) At other times I wish they could see the “old Me” just for one day, & see that I used to have a body I was so proud of (so athletic), a walk I loved, energy to burn, etc. But that will never be, & that is OK too. They seem to like me & accept me just fine anyways…


March 31, 2007 at 8:20 pm

When my GBS hit its peak, my friend told me that she was the worst friend in the world and she couldn’t help me NOW. (She lived 5 minutes away.) I had another best friend who stopped by every other week for a few hours to get groceries. She had a dream at the beginning of my illness that we would not be friends when it was over because she did not help me enough. Well, she got her wish. She left me high and dry six weeks ago – knowing that I was alone and needed food. My garbage piled up in the kitchen. She was a “friend” for 30 years and I trusted her implicitly. Had her as my beneficiary. So every one of my friends is gone. Luckily I have a counselor in Tampa that keeps me sane. I thought it was something I had done or not done. He told me that these so-called friends were damaged people.

So be grateful that you found out early. I am sorry that I wasted thirty years on these people. My only relative did nothing. I live alone and it is tough. People drive past the house and call my brother and tell him the snow in the driveway isn’t shoveled and the garbage can is on its side for a month. They knew I couldn’t walk!!! What idiots. How long would it have taken for them to pick up the garbage can??? I think I should start a business called RENT a FRIEND. My father used to say that your best friend is the dollar in your pocket. I never knew what he meant till now. I am not negative – just disappointed and lonely. How do you find friends? I am no longer as trusting as I used to be. WHere is the compassion in people. THose of you that have friends that stuck by you – count your blessings.

GBS Sept. 06 – present


March 30, 2007 at 7:10 pm

My 10 year old son has cidp and his friends have been GREAT. It is my best friend that has been letting me down. We have children the same age and when I am sad or depressed and call her, she yells at me and tells me to deal with it! Mind you I have only had two meltdowns with her. On the other hand she has daily meltdowns regarding her daughters social schedule and girl conflicts. Lets see, who should deal with it? Anyway, I am learning that your best friends are not always who you think they are when the world is not perfect. It seems that certain people need others to fix their problems but when they are called on to help you, forget it. Honestly, I think this web site is a great outlet for support and streghnth from people who really understand the problem and the order of importance in life. We just made a connection!Thanks,Dawn Kevies mom


December 4, 2006 at 2:57 pm

You will be in my thoughts and prayers during the holiday season. I knew it would renew your grief and that you would choose not to send out Christmas cards, so this year I was not expecting one.