Monday, September 27, 2010

Life is just too hard...

I hate to complain here, but truthfully, life is becoming too difficult for me. Just little things are a burden to do...returning emails, calling my mother, grinding the dogs' toenails, watering the tomatoes outside...mailing a letter or card.

Anything extra seems so onerous and I think it's because just keeping up with the daily duties of household life take up all the energy and time that I have. I'm getting to where I often have to empty the dishwasher (and fill it) in parts and pieces...empty the top drawer and then close it all up and come back later and do the bottom drawer.

Typing has become harder, my fingers and my brain are not talking to each other as well as they could. And typing things you don't mean, and going back to correct them, just a little thing like that tires me out no end.

I've been doing some reading of medical articles on my C1 fracture etc, and seeing how weakness is a big part of the broad spectrum of symptoms that accompany spinal cord injury/brainstem injury. I am sure I've read that before, but I read it like its new, and I think, "All those years of trying to get doctors to understand that my weakness is not because I am out of shape; it's not because I need to get back to exercising and build up strength. I used to try so hard to convey to them the type of person I am and that I will "do" just as far (and even further) as my body will allow me to do, each and every day."

Maybe those doctors knew all along that profound weakness is part of SCI, but they would not tell me, and they'd let me try to plead my case that I'm not malingering, I'm not lazy, I'm not so much out of shape as I am profoundly weak.

I know I need to have the surgery. But I am at such a loss to make it all happen. I thought there was a skull base specialist in Seattle, but I looked more closely at his bio online, and he is a plastic surgeon. I did not trust the doctor who offered me surgery in Portland and I can't put my finger on why. It's so hard when you have something rare and you don't know where to turn. But I'm getting worse and worse.

I've learned that you can have a shiny, new mobility scooter and want badly to ride/use it, but you have to feel well enough to do that first. Whatever is hammering away at my brain and body usurps my strength and pours on the pain, like coal being shoveled to a steam engine.
Pour it on! Chug, chug, chug. This painful weakness rules every single day of my life, and the only thing that keeps me going is knowing that from time to time, I will have a few minutes where I'll feel good enough to empty half of the dishwasher...or call my mom.


Cassandra said...

I'm so sorry to hear how weak you are and how much it affects every aspect of your life. It tears at my heart because you are such a wonderful person who has so much to give. Damn bodies spoil our good intentions!! I will continue to send you healing thoughts and pray that you can find the right surgeon.

Lurker Mom said...


What a valiant effort by you to just live within the limits imposed by your abnormally healed anatomy.
I salute you for it. And even more, I feel for you as you begin (yet again) the arduous task of finding that rarest of things, a neurosurgeon with a heart :)

I know you have been hurt repeatedly, and I hesitate to suggest you should return to a place where your hopes were once cruelly trampled, BUT here I go anyway.
I think since the time you first contacted Dr Henderson (of Bethesda) he has gained a wealth of experience with complex cases like your own, so you might give it another go?
One thing I can vouch for....he definitely has a heart.
Either way, God grant you strength for the quest.

By His Grace said...

Cassandra, thanks so much for your prayers! I know they work, I see miracles every day!

Lurker Mom, thanks for your loyal following of my humble writings...and thanks for your kind words. I've often thought how much I wish it had worked out with Dr. H for me, I've heard so many wonderful things about him. And I do believe that he is proficient in everything necessary to fix me up. But, alas! He has told me he does not want patients from out west. He and I left things "good" between us, even though I was heartbroken for awhile when my appointment was cancelled.

And, the sicker I feel, the harder it is to even think of going to MD or way back east. As you know, I did it once, for surgery in NY. But now I look at that and think, "how did I do it? I couldn't do it now."

I appreciate your suggestion and even like it. It's nice to keep that option back in the mind just in case things change...and I felt "up" to going back east...and he'd be willing to give me a look.
I do believe he is a brilliant surgeon, from all I've read of his writing and from that seeing his innovative thinking.

Thanks, LM. I love that last line you wrote. Strength for the Quest! Ah, that will be nice, when that day comes.