Re: I need to have a crying party.......anyone got an extra ear with a few to...

Thu Mar 22 05:16:12 2001


I wish it was a simple matter of getting him to understand the ARD. The fact is that I've been fighting health related issues since the birth of my youngest son 15 years ago and my husband is just tired of me being sick. He's angry at the amount of medical bills I have amounted (w/no insurance no medicaid) and we are on a fixed income (he is on disability). I've tried to get him to read osme of the things I"ve printed off but he is just too wrapped up in himself to see that I am hurting.

Life is hard, I don't deny that. But I've fought the fight against cancer and I won, not once, not twice, but 4 times Lisa and my body and my mind are tired. But with ARD it is so different. I feel that my level of functionality is that of an amoeba, my amount of contribution to my home and family is that of a nat - - I do good to get out of bed and read the posts and get to the dr appointments alone. Fighting a disease is hard enough but when you have to fight for doctors to acknowledge ARD, acknowledge the pain and suffering that goes along with it, and then you have to fight for relief, no matter how short lived that relief may be. Why do I have to fight for my husband, my family, my friends, to understand that this isn't in my head, I am not lazy, I do want to be a contributing part of my family!!!!

Sure I'd love to sleep all day long and never get out of bed. What good does that do? I am the one who misses out on my kids coming home with good news about something special that happened at school or news of the new grandbaby on the way. So I get up and I sit there like a bump on a log. But atleast I am there.

I hate this disease it is so much harder to fight than cancer. As I said to Helen: To tell you the truth I am more scared of this than I was the cancer and that's bad. How do you fight something that doctors won't acknowledge much less treat? How do you fight for a life that is filled with pain and partial functionality? I feel like I am only functioning at the level of an amoeba, I am not a mother to my children and I am certainly not a wife to my husband. Most of my days and nights are spent in bed, and when I do manage to get up for a little while it is just to get on line and find encouraging emails from friends like you and the others from IAS. I am so scared Helen.

Only time will tell.

**HUGS** thanks for listening to me cry Missy

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