My Sisters Melanoma and My IC

[Teri]

I'm feeling pretty sad tonight. I've been in bed for 8 days with this stinkin' infection and flare. Today my sister called and ask me to take her to WalMart and I said sure....figured it would get me out of the house and bed for a few hours.

She had all the lymph nodes removed from the right side of her groin and right now she doesn't have any feeling in the leg so there is no way she can drive. She is depending on either her husband or daughter to do what needs to be done and today she makes the grand announcement that if she has to live like this for the rest of her life she will not continue to live. You could have put me thru a brick wall with a feather duster!

Only AGAIN more proof that my family does not have one clue in he$$ what my life is actually like. I got a get well card from my step-mother the other day....geez, it's only been 8 years since my life came to a complete stand still and I just got a card

God knows that I don't want anything to happen to my sister. God also knows how very very angry I get because my family still doesn't have a clue and if one of them calls here and my husband tells them I'm in bed they ALWAYS say "again". That HURTS and I've told them how much it hurts (and that was a very very hard thing for me to do) but it won't do any good.

I just want to know that my family cares as much about me as they do my sister......as of yet, her case is not terminal. Yes, she has a horrific 4 weeks ahead of her when she starts her treatments but if some one told me that I was going to be sicker than I've ever been in my life and at the end of that 4 weeks I could go into a 5 year remission.....I'd be there!!!!! I most certainly don't live in bed bacause it's enjoyable. Or cathing, I get no satisfaction from that at all. And now, I am able to inject the lidocaine into my urethra and that doesn't help for long but it help long enough for me to beable to focus. One of the other 'happy options' I've been given with the IC. Usually while I"m laying there waiting for a spasm to quit I am wiping the tears off my face while I'm telling myself "this is no way to live, this is no way to live"......

I am by no means trying to ignore how severe her Cancer is. They don't even have a percentage rate on the life expectancy of a melanoma patient because they usually die. This sounds soooooooooooooo curel but we are all going to die. I am actually jealous of her in regard to the life expectancy rate because we could live to be 90 and just have more and more life sucked out of us every day of our lives and when the services are being said at our funerals a preacher will say "she was a long time sufferer of IC" and everyone can look at each other and say "so, what's that".

I just feel like a little bit MORE got sucked from me today. And, I feel it because NO ONE in my family has taken 10 minutes of their time to find out exactly what it is......My God, I've spent hours on the computer trying to find different places she could go if they could help her more than where she's going.

I just don't get it and it makes me so say

[ICNDonna]

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Donna

[SueC1]

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[deborah b.]

((((((((((((((((((TERRI))))))))))))))))))))))))))))))))))

I HAVE BEEN THINKING ABOUT YOU ALOT HAVE BEEN PRAYING FOR YOU. I TAKE CARE OF MY MOM SO IF I DO NOT FEEL GOOD I STILL HAVE TO TAKE CARE OF HER TOO.

I HOPE YOUR SISTER WOULD REALIZE WHAT YOU ARE GOING THROUGH TO!!!!!! I HOPE YOU FEEL BETTER AND TALK WITH YOU SOON. DEBORAH kissing

[auntiedeb]

{{{{{{{{{{{{{Teri}}}}}}}}}}} My family doesn't understand me either with the pain of ic. Dad thinks it phatom pain. LoL. I am feeling better though since we are trying some new meds. I have to be thankful for the good and bad days. There are days that I cry and tell my friends to leave me alone cause I don't feel good. then they go why are you mad at me? I am not mad at them. I just need time and space and to deal with this. this is not an easy disease. Once I get anew computer and new printer, going to print out alot of stuff and put it in the breakroom at work and on the coffee table here at home. Maybe then they will see what we are dealing with. Thanks for your support and inspriation. Hang in there. There is always hope. Prayers for you.

[Teri]

I think that's a great idea Deb.....and you can always have someone put some reading material in the mens john

[auntiedeb]

Thankyou Teri for the smile. Belive it or not, I have gone into the men's bathroom when I relaly have to go. I dont care at least I can pee where I can. LoL.

[darlene]

Teri, I think an answer to why we are not taken seriously, was in your post. The mourners at the funeral, saying IC, what's that? People understand cancer. They hear about it all the time. IC is unknown to the public, and quite a few doctors. That's why it took me over 30 years to be diagnosed. Because information about IC, isn't available, people think it isn't a REAL disease. Telling them over and over, doesn't work. I've tried! They won't accept that a disease other than cancer, can be chronic, and cause terrible pain. We are given a period of time to be sick, but are expected to get better, and stay better. When we don't, they think we must have done something wrong, and our sickness is our fault. I don't think there is anything we can do to change this. It is probably human nature. Take care of yourself, and don't feel guilty if you have to say no to anyone.