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-   -   Billye &Laptop (https://www.neurotalk.org/peripheral-neuropathy/22094-billye-laptop.html)

Silverlady 06-19-2007 09:40 PM

Thanks to all of you
 
I appreciate all of your comments. They made me blush. I certainly don't think of myself as pretty.:o

You know, that's been one of the worse things about the disease I have, and a big complaint I hear on the Sjogren's forum. "You certainly don't look ill." You would be surprised how many of the members have gone undiagnosed and in terrible pain, been accused of malingering, etc., lost jobs, lost family because they don't look ill. Sjogren's is a sneaky disease. It destroys us from the inside out by drying up everything inside us. There is a lot of theory that the dryness affects the myelin sheath. I can certainly believe it. It affects everything else. And I think it possibly affects the brain itself, since it seems to affect the nervous system. I know mind and hand don't seem to be as coordinated.

When we were at Mayo, I was examined by a number of doctor's and I've read my records. Most of them said "attractive, pale female, looking extremely normal except for weakness and seeming inability to walk". Then the test results came back in. They proved I was ill and the doctor's changed their tune.

Mrs. D mentioned that maybe I "presented well" to my doctor's here. That perhaps I didn't look sick. I just look this way, I don't do anything much to make myself look the way I look here. And my husband could make an armadillo smile. He teased me until I smiled. He finally lifted my fat little chihuahua up to help make me smile.

It took me several days to get this photo made. I didn't want to "look sick" for it. I live in my gowns too. For this photo I took a shower, put on some makeup and picked out my most colorful gown. I "dressed up" for all of you.
It took a lot of energy to do this. I can't believe I was doing this as a matter of routine several years ago. Getting dressed, I mean.

It's funny...I don't think of myself as sick. I'm just not mechanically functioning and my body needs spare parts. My mind pretty much feels the same. I have no heart, lung or kidney problems. Just the digestion and nerves are not working right. And the lacrimal and salivary glands. No moisture in eyes and mouth. But most of the time, I don't feel ill. Just sore and in pain. I guess I don't really know what sick feels like. I've been this way so long, it just feels normal except for the pain.

But then, I hear this all the time on the Sjogren's forum.

Just musing here tonight and thanking all of you so very much.
Billye

MelodyL 06-20-2007 08:24 AM

Billye:

There's a new series coming out on Wednesday nights very soon. They did a remake of the old Bionic Woman. In the promo it shoes Jaime laying in bed and someone is comforting her and saying "they had to give you new legs and an arm". And she throws off the covers and she sees two skinny artificial prosthetics (not yet actual legs). Then she throws the guy across the room. I never laughed so hard.

Makes you think "hey someday, spare bionic parts". I think "hey, spare bionic nerves". You never know.

At least it will make us laugh!!!

Take care,

Melody

daniella 06-20-2007 10:08 AM

I really like your hair cut and color. Its so shiny. I'm glad your enjoying the computer.


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