Sunday, September 19, 2004

Sick and tired of being sick and tired. Ha, ha, ha:

For those keeping track at home, my mom's surgery on Tuesday went quite well--much better than expected--and she's recovering rapidly. Thanks, all, for thoughts and prayers. I relayed messages to her and she was touched.

But here's what gets me: it's so fucked up that she needed surgery in the first place. The nerve damage from the fibromyalgia began loosening her teeth two years ago and they had been falling out since then. On Tuesday, she had to have all of them pulled and dentures inserted.

Mom has been in unremitting pain for over a decade and it breaks my heart. She hides it well and I'm amazed by how many folks haven't grasped the obvious: they only see her when she's able to leave the house, which, on average, is twice a week. She's wearing a cute ensemble and she's got her cane and she's lively and funny and makes self-deprecating jokes about how slowly she moves.

They don't see the hours that went into getting ready: showering from the night before and getting dressed in increments. Put on bra and underwear; lie down. Put on pantyhose and jewelry; lie down. Same for hair, makeup, shirt, pants and shoes. And this is someone who logged the second number of trial hours for several years running at the King County Prosecuting Attorney's Office.

She's already outlived her own mom, who also had acute fibromyalgia--though no one was sure what to make of it then--and who succumbed to a heart attack at forty-eight after a two year stroke-induced coma.

The Centers for Disease Control and the National Institutes of Health have thus far concluded that: 1) one is probably born with a genetic predisposition to fibromyalgia and/or CFIDS; 2) the symptoms from both illnesses significantly overlap and are probably related; and 3) both illnesses tend to run in families. I, of course, developed CFIDS at twenty-four and my second cousin became severely ill with fibromyalgia in his early twenties, so the evidence is definitely born out in our family.

Last week I told Mom that I have a sort of survivor's guilt: I was struck younger than she and her mom, but I will probably benefit more from current research because I will be younger than her when a treatment or cure is discovered. Ampligen is in FDA test phases and, if approved, will be the first drug developed specifically for the treatment of CFIDS and fibromyalgia. If it works, Mom and I could have new lives.

Which isn't to say we don't love the lives we have. Like I said, Mom's spirits are good--we both have a deeply ingrained "never say die" mentality--and I have sold or placed fourteen articles since May. I love my family and my friends--here I'm truly blessed--and I'm going to New York again, halle-fucking-lujah.

But the toll has been high: I've been much less ambulatory and in much more pain since mid-July. I have daily intestinal cramps and a fever as often as not. I walk with a cane several days a week. I've made it out of the house less than ten hours all week and on Thursday, the chills were so bad, I almost cried in public. (If you know me, you know it takes a lot--like a fucking anvil on my head--to induce public tears.)

More so than anything, I feel isolated. I once wrote, "I don't want to live with my nose pressed against the glass" and I don't. Which is why I remain hopeful: the alternative is unthinkable.

For more on the new Centers for Disease Control study that concludes the U.S. loses $9.1 billion annually due to CFIDS:

CFIDS -- Legislative Alerts and Updates

1 comment:

LeFemmeMonkita said...

I'm so glad you're mom is well after her surgery! sigh! What is it with moms and surgeries lately? Mine has her second eye surgery for glaucoma tomorrow.

In any event, your mom sounds like you: a tough broad whom I adore!! :-)

Hang in there girlie...and if you need a latte delivered, don't hesitate to pick up the phone and call me!