[SIZE="4"]Wow, what wonderfully kind words you all have written. I am going to print this one out, and in fact several copies, and keep it so I can read it when I feel worthless.

I am constantly shocked by humans failure to respond with love - not the other way around. As I went about the last 30 years in school and business, it seems like i was always active in food drives, toy drives, paying a school to have a free class for handicapped kids for singing or music, etc. I do not mean to toot my horn here - what I'm saying is that my buddies all went along with me, happily. So I'm extremely confused that they don't offer and simply won't give me a ride to a doc, or come over and make me a sandwich and sit for an hour, or offer to rub my shoulders...how strange this has become.

In fact, I am very surprised by the number of my friends and family who - after really confronting them and putting them on the spot - simply admit that they don't believe I can still be sick, and that my "back or hand" should have healed by now. I ask, "didn't any of you read all of those articles I KEPT sendin in the early days? Do you still not get that it is in my BRAIN, not a disc in my back that is working again me?" They just stare. And I feel like somehow I am cheating the system. This glorious system that I am getting so gosh-darn rich off of - we all know I'm hiding billions behind Mark's Goober...

So I wrote out this post for any of you who have had a family member say something really mean, or a friend who made fun of you. I've been there, but look at what great people we have here at the site! Gosh, just the BEST.

P.S. I am still getting some extra sentence or misspelling in my post. I don't know if fiance is doing this as a joke or what. But I guess I need to keep a close eye after I've written something. I am really sorry to all of you for this weird problem.

((((tam))))

i wish i knew where people went when we have life changes like illness.

even with grandmonkey here now, friends disapeared. double whammy.

family and relatives that have been there since the begining. *poof* maybe it hit too close to home for them. but it's very hard when a spouse isn't supportive.

you have wonderful caring and supportive friends tam. they know and understand. you can feel the love from their posts.

post when you can. take care of you.

Curious

(((((((Tam))))))))

I know how it feels, and it feels rotten.

Between my illness, and my husbbands cancer we lost 95% of our friends and probably 70% of our family.

My illness, my husbands cancer - it was too much reality for them.

They expected both of us to bounce back instantly and revert back to our old life -- the way the "patients" on ER or other medically based TV shows bounce back and go back to normal immediately.

It doesn't happen like that in real life. Even with his cancer... sure he is in full remission and back to work, but he has lingering medical problems because of the chemo.... and even if he had no lingering physical effects, going through something like that changes a persons mindset, priorities, and view of the world.

We were no longer like our friends or like other 30 year olds - we were different - and the friends and family didn't understand why we became different and why we could not just "snap out of it".

It's hard to realize that my life and my husbands life was just too much reality for the people in our lives.

Thankfully, we were able to continue to get support from each other, and from forums like this one where we could meet people who understand what it's like to go through a life changing illness and be different.

My husband and I stopped trying with the friends and family who didn't understand. It was too frustrating, it was too heartbreaking, it was too disappointing, and it was a waste of energy and time because some people will never understand no matter what. It was hard at first to stop trying, but in the long run, it made our lives better.

We focused instead on the few friends and family who do understand and on our online friends who do understand.

(((((((((((hugs))))))))))))


Take care of yourself Tam,
Liz

Yeah Tam, People Say, "oh You Look So Good!!" And I Say Well If You Only Saw My Mri Or See An Xray Showing A Missing Rib.....i Hate It Because We May Look Fine On The Outside But Are Suffering On The Inside So Much That Life, Well Living Life Is Sooooo Dreadful And Scary! I Love You, Tam!!!

Tam,

Thanks for checking in with us - I've been concerned, but am now relieved to hear that fiance is screening your calls in an attempt to take the pressure off of you.

I'm taking a short (I hope) hiatis from the forum too - having a bad patch at the moment.

In line at the store yesterday getting bath towels as a gift for my kids... I couldn't hold 3 stinkin' towles, so I set them on a display as I waited in the long line. The lady next to me struck up a conversation and told me about her injured shoulder. I gave her plenty of sympathy. Then she asked me what was wrong with my arms... I just smiled and told her "You don't want to know.". She was good with that.

And I believe that's why we lose our friends and the caring of our family and loved ones. They REALLY DON'T want to know. It's not that they are insensitive, it's that the severity of TOS and the lack of that 'quick, TV drama fix' to make it all better. Example:

When I was 15-17 I had 2 best friends. We were the 3 Muskateers... what fun I had with Jeanne and Glenda!! Jeanne was 1st chello in the Teen Orchestra in ATL, and we also took 2 summers of art classes together. At the end of H.S., Jeanne got cancer of the gums. We were shocked and so very sad. She went into Hospital and I went to the flower shop to get her some flowers. I sat in their parking lot for what seemed like forever as the seriousness and the mortality of my friends condition hit me... HARD. I couldn't cope or accept or even fake being able to cope. So I bailed out on her. I never showed or called. A year later, I saw her and her Mom at the mall as I was driving by, I called out to her and she came over to the car. She said I needed to call her. I didn't call her, but intended to later in the week (sound familliar zarra?). Well, about 2 weeks later I ran into Glenda at a sub shop. She told me Jeanne had passed away. (I'm crying over this right now)

I may never forgive myself for not being there for her.

And all our friends and family who bailed on US will feel the same way eventually... but sadly it may not be until we are gone from their lives before they realize that this was an opportunity for them to mature as whole human beings.

I love you Tam and keep you, and all of us in my prayers.
Anne

Liz, I didn't know your husband had cancer too. I'm so glad I came back to this thread to read that and all the other posts. This was just the thread I needed today after another disappointing experience with friends and family over the holidays.

It never fails that my Tos is the worst around the holidays and I miss out on so many get togethers and events. No one understands how I can "look so great, look so healthy" in the summer and then barely be able to move when it is damp and cold.

And then if we do manage to make it to something they don't understand why I still can't pass the food, or reach for a gift to pass around to show everyone, or even opening presents... Hubby has to do that for me. When they see him fill my plate, cut my food etc. etc. they act like I'm just trying to get attention.

And poor hubby, one day he's improving and the next he's having a reaction to his meds. in his pump and is swelling in the extremeties and unable to think clearly.

I think it's true that people don't know how to react, even our middle son sometimes avoids us, and he wants to be a doctor..? That one I don't understand. Is it fear of losing his Dad?? (Hubby's son)

It is painful Tam and everyone.

Sometimes I think maybe it's because we were always the caretakers and givers in the relationship. At least in my situation it seems to be. Hubby and I are the people pleasers. We were always trying to make everyone happy.

Anyway, it helps to know it's not just us.

Group Hug, we all need it. And isn't it great we have each other!!!

G ~

We sure could use a group hug Liz.

And it's so hard for me to talk or write right now - both areas are so high.

Otherwise, I could call and talk this out with you kids.

Astern, (Anne), you are a sweet person to cry over your friend now. I know she sees you (these are my beliefs) and I know she forgives you, as you thought of her now and many times. You had a love for her - that's eternal. But at the time, you were JUST A KID. Just a high-school going, Friday night maybe a party or writing notes about a boy high-schooler or readiying yourself for band and tests.

You weren't expected to have the wisdom of Job. I am so sorry she died before you were able to process ALL of that. But you have now, and you're right. She knows it. What a big heart you have.

I personally don't know how Liz and her hubby manage at all. Talk about challenges. I pray for them often. And I swear if I win the lotter I'm building the FIRST TOS LIVING CENTER ON 17 MILE DRIVE IN CARMEL. Haha. Seriously. IF we're in pain, we're going to have a bedside view of either a golf course or beach... and a butler who comes at 4 AM to provide meds so we can sleep to a whole night.