I hope I belong here...

[Skye83]

I *think* I do. You asked me, Alan, if I were para or quad. I'm neither. I belong in the narrow category of ambulatory, but severe spinal cord injury. I have only a sliver of spinal cord left at T9-the tumor totally occupied my cord at T8-10. From C7-T11, I have syringomyelia-cyst filled with spinal fluid, that is also deteriorating my cord. Since my cord was cut to remove the tumor and since I still and will always have the cyst, I have *severe* pain. On the one hand, after complaining about my doctor's statements that "things could be worse," I feel guilty telling you all I'm not paralyzed, but the pain is so debilitating, I'm homebound and bedridden. I can't even sit here at the computer very long.

So I don't fit neatly into any certain category and I have to try to find others who can relate to my pain. People see me able to walk and think my pain can't be all that bad. At least I'm not paralyzed. If I were paralyzed, people would probably think, well, she's numb, so she can't possibly feel pain. Why doesn't she just adjust to her chair, acclimate, rehabilitate, yada, yada, yada...

So that's why I have felt so isolated. There may be some of you who think I shouldn't bitch if I can walk at all. That's OK-I've been dealing with envy myself on certain issues.

I'm upping to 80mg oral baclofen to see if that helps. WR, I feel the "gripping" *all* the time, but just like spasticity, it worsens with movement, vibrations, even the fan blowing on me (which I need 'cause I sweat so much.) http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[Jim]

Of course you belong here!

... http://sci.rutgers.edu/forum/images/smilies/smile.gif...

[alan]

Nobody was implying that you don't belong here. Bitch away - you've got good reason..

If I was a para instead of a quad, at least I'd be able to put myself out of my misery when the time comes when that I can no longer take the pain.

[Skye83]

Alan, I know you weren't implying anything-I was just thinking out loud. I know where you're coming from not being able to end it all because of the physical limitations you have. I don't know what's worse-not being able to finally end it or having the ability to and fighting off that impulse minute by minute. The latter is my particular situation, anyway. Some people are always sending or telling me platitudes that might apply to other life situations, but the only platitude that works for me is my own. Just one more day, one more day..

[calico]

Skye, if you have a spinal cord injury and are in chronic pain as a result, you belong here. The mind is constantly making comparisons. Just like the doctors I rail against who decide how much pain we're in (or not) and how functional we should be as a result, we do the same thing to ourselves by comparing our situation to that of other people. You can decide whether or not your situation is better than somebody else's, but what difference does it make? Your suffering is enough to take you out of the ballgame. Isn't that enough to make you worthy of compassion and help? You are ambulatory. If you weren't ambulatory, it wouldn't improve anybody else's situation one wit. You aren't condemning anyone else to more suffering by being more functional than they are.

The way I see it, we all need each other, and we need the support of people who don't have any spinal cord injuries at all, probably MOST of all. There are more of them than there are of us and if they aren't behind us we'll never get anywhere.

Here's another platitude for you that keeps me going;

"Somebody, somewhere, is doing something that is going to help me someday". I don't know who, or what or where, but there's a researcher who is not spinal cord injured who is having a "eureka" experience at the water cooler at this second that will send him/her down a knew research path that will help us. It's not pie in the sky false hope. It is happening.

Calico

[QUOTE]Originally posted by Skye83:

I feel guilty telling you all I'm not paralyzed, but the pain is so debilitating, I'm homebound and bedridden. I can't even sit here at the computer very long.

[Skye83]

I appreciate your response. It helps put into words and perspective the kind of validation I've been seeking. I can't do it entirely on my own, except by telling myself what you said-the comparisons are unproductive. But it helps to "talk" to others here who understand.

I like your "platitude" too. I have that hope, also. I keep "bugging" MD Anderson about studies and it's heartening to know that studies are being done right here in my home town.

I'm very glad I found this group. I esp appreciate Dr. Wise Young's posts on research