I mentioned "to a family member" I was glad she was close to "another family member" so that if I am not available, she has MORE people to rely upon in her life than just me.

She said, "Oh all you do is talk about DEATH!!!"

I said, "That is so not true, and I'm not talking about death right now, I'm talking about if you bust a tire on the highway or need a few bucks, you've got more in the family than just lil' ol' me to rely on, you little turd!"

We fought more.

I called the other turd and said, "you know I don't talk about death, why does she say that?" She said, "I didn't want to tell you this, but she is afraid of you now when you're sick it makes her feel WEIRD and she doesn't like to be around you cuz it makes her feel WEIRD so she's got to get over this, not you."

I Actually called her tonight because I was feeling UP and GOOD and that's when I call her for the "high" sound in my voice...I cannot win for losing and all I want is the love of my family...

I then learned some other stuff which left me feeling I only have one person in my family who really loves me.

Does anyone else feel this way, or do they have a table full of family that just loves them to death??????So I have a bad personality that pushes all of the love away???? Of course I'm over reacting right now...but really, I don't always talk about death, mostly I talk about how i can help that person with a new car or new place...hahahhaha, just kiddin' on that one.

That blows!! I won't get into how wrong this senario is at all but I do wanna say that its hard for our family and friends to understand what it means for us to be disabled. Truly, it is hard to put yourself in the shoes of a TOS-er until you're there yourself (I can't imagine, as a TOS-er, how someone with MS could feel). And yeah, we complain and get a little doom and gloomy, but isn't it like that on any soap-opera, movie, etc we've ever seen when someone is newly limited physically?? (I wish I could recall just ONE dramatic scenario right now! :P )
I'm straying, sorry! I just want to let you know that I have family that is not dealing the way I want them to either. All of them But I am blessed to have friends that do. But even they get ignorant about the pain and limitations I battle daily.
My heart goes out to you Hang in there!!!! Hope the anger simmers down soon- they just can't understand :/

I'm guessing it was your dd's..
Remember that they are still kids and for them to think about mommy being in pain all the time and not to mention if you weren't around at all, is very scary.
Some adults never learn to cope with family members that have long term illnesses or chronic conditions.
You were the supermom that took care of them and made lots of money- they had a feeling of security then.
All that has changed, and too maybe they were hoping the surgery would "fix" things more than it did...

This just popped into my head,
Have you looked for any books to give them on coping/dealing with the illness of a loved one?
Role changes , coping skills, that sort of thing..

Hang in there Tamara !

Some people just don't "get" it. It is really frustrating when you think a loved one does understand and then they blind side you with something.

Thanks for the support.

I don't want to say who it is that I talked to that upset me so much, in case any of my family reads these posts...

I am now on year 6 of my illness -

This is the first year that one of my family has even been able to call and talk to me, because she felt so "turned off" by me getting sick. She didn't know what to say or how to feel, etc. Instead of being distant, I now talk to her as if nothing has happened...however, I can never, ever talk about my illness in any way with her, I do know that.

If you Yahoo Karen Duffy sarcoidis she is the Mtv girl who got cancer when she was dating Clooney. He immediately dumped her - like on THAT call when she called him from the hospital, saying what she had, etc. She went on to get married, but then her illness came back strong and she has written about how hard it is to find a family member or friend who can deal with the illness. She also writes about how important it is with pain to get adequate pain medication. I found her interview really interesting in that it is so much like our posts and how we support eachother. (She has written one or two books now on the subject of painful illness.)

So I am learning it is not just "us" who has a hard time with family / friends...I am glad I fell onto the interview.

I haven't weighed in on this subject until now because it hits so close to home.

I have been guilty of doing what your family member does and wonder if some of it is basic instinct? Survival. I hate like damn to think it's sheer selfishness or ignornce.

I know that with my family, they try to 'forget'. That is until one happens to call me, or worse - see me in a flare-up. As you said in another thread Tam, this isn't like cancer with a beginning, middle and end of treatment (or life). This is a marathon of surprise pain that seems to go on and on. My folks don't want to accept that. So I accommodate them by trying to keep in my room, not talk about it or let on to any of the children what's happening.

My poor Mom though - sees me every day and I KNOW she's got to be sick of seeing me in pain 80% of the time. So she ignores it. Example:

Yesterday I was in a 9+ flare. In bed all day and medicated. Late in the afternoon Mom asks me what I want for dinner. (I do nearly all the cooking). So I suggested something I could easily cook, but she decided she wanted all this stuff that required pots and pans, etc. so I reminded her that I didn't feel up to doing 'all that'. Her response was 'oh well I was going to cook'. MMM-hmm. Yeah. I had to teach her how to make a grilled cheese yesterday afternoon. This is the woman who taught ME how to make grilled cheese. I did NOT feel up to giving her a second cooking lesson, then watching everything cook because she forgets that she's cooking.... AAARRRGGHHH! So I made 2 bubba-burgers (feeling miserable mind you).

At least she's good about doing the dishes.

My siblings are more sensitive to my pains... but trying to get them to come and HELP ME is like an interruption to their lives. A pain in their *****. I know they have kids or teach yoga or have jobs, etc... hey - I used to be a multi-tasker too. I guess all I'm saying is I wish I was a little higher up on their priority lists.


I guess we can't have it all, eh?

Tam, my family loves me dearly and vice versa. Some things get tiresome.

___ calls any medication I take a placebo. Even when he can't remember the word he says that P word and I know exactly what he means. I am skilled at changing the subject to prevent the anger. Just yesterday the doc prescribed that I suck on lemon drops so the radiation would not make my salivary glands sick. He was asking me what that P word was again.

____ has decided he will not sit down to a meal with me if he can help it because one time I described how much our cancer day out day had been affected by vomit. I reminded myself how I needed his help and decided not to be angry.

____ has amnesia about anything related to my health and loves being blissfully unaware.

Dear departed ___ was convinced I did not want to get better and that if I offered her a safe home to live in she would end up taking care of me. So she often lived in unsafe homes or camped in the Wal-mart parking lot.

___ believes all my problems are rooted in my choice to live in Texas and go to bad Texas doctors.

___ believes all my problems are rooted in my choice to live in Texas and go to bad Texas physical therapists.

___, ___, ___, ___, and ___ believe that I am overweight because I eat too much and that it has nothing to do with metabolism. Now, for some reason that does make me mad because I feel ganged up on!

So hear ya, so understand Tam
They miss their Mom, their daughter, their significant other as they knew her. Its like living with cancer the rest of your life, miserable at times. Pulling yourself up by the bootstraps and plugging along.

Yep, 12 years of this now...most family understands Im hurting and cannot no longer do all the things Cyndy used to do. I know they miss the ole Cyn but I do the best I can and re-training the mind is a b***h. They do offer family events at their homes and the cooking now. Yes, the daughter is the one that is arm lengths.

They get tired of hearing about it. I just keep low and attend when I can and in bed when I have to as not to subject them to the misery.

Even Phil gets so tired of driving me, doing things for the house, for me, gets angry. I just pay people to help me now so he doesnt have more on his plate.

Can I say, its a pisser?

The pots and pans, cooking and cleaning thing is nuts. It came natural and is natural to others. They so dont get it.

Phil, can you get out the pan, Phil can you get out a bowl, Phil can you get out ________ of the refrig, Phil can you fill this pot with water, Phil can you stir, Phil can you chop, Phil will you open these cans of tomatoes, Phil get out your dang pasta, Phil can you please clean?

Why do we do this to ourselves??

my family thought i was a hypochondriac for the first 6 months. sigh.