Ouchy and tilty, but I’m still here

After many months of floundering and not being able to recover from even the simplest tasks, I sought a new doctor. It hasn’t worked out well, but I did land in the office of one who decided perhaps an MRI might be a good idea (only took 12 years) to “rule out MS”. I’m happy to report there are no nano-zombies slowly devouring my brain. It still doesn’t explain the copious amounts of pain, the sleeplessness, dizziness (which seems to be increasing in its frequency, despite decongestants & antihistamines), or the fatigue, but at least now I know my brain isn’t leaking out of my skull.

For the 8th (or is it the 9th?) time now, too, I am informed that my thyroid is also not the cause of my problems (ya THINK?!). I’m on the prowl for yet another doctor, and having a new lead, I made another appointment. This time, I’m taking 10 clothespins (one for every fingertip) with me, and when I’m asked what my pain level is today, I’m going to invite her do to a modified version of the clothespin challenge so she can feel for herself (yes, I know; it’s a pipe dream).

I’ve done this clothespin challenge myself and can report that it’s not difficult to sit with a single clothespin on a finger for 1/2 an hour. It can, however, give one a clearer understanding of how intrusive that pain is or how much effort it takes to function daily despite it, especially when it radiates throughout one’s entire body.

I’ve been getting lots of love from my husband and many of my friends have been poking in via phone and email to boost my spirits, entertain and distract me, and help keep my frustration from turning into self-pity. Ya know what? It’s working. I’ve been less inclined to focus on people — especially doctors — who neither value me nor my time; this in turn has saved me a great deal of sorrow, energy, and frustration. I’m thankful for people who recognize my limitations without using them as an excuse to avoid me (or bludgeon me constantly with their opinions), and each day is another day I’ve learned something new. I’m ever so thankful to my husband for constantly reminding me that I have value beyond my utility; that I’m important to him no matter how much or how little I can produce in any given day. (Today, my deepest love, you get homemade vegetable soup.)

For a long time I’ve witnessed the suffering of FMS and watched it minimized, especially in the shadow of illnesses deemed more important because they’re fatal or fall under the Law of Names (borrowed from mythology: knowing the complete and true name of an object, being, or process gives one complete control over it). FMS has no name, no true footprint to mark or measure, and its origin is still unknown. What a nasty pill to swallow, this realization that I’ve been minimizing my own suffering: I’m not dying, so who am I to be whining about it, right? Who am I to ask for love, or support, or … gosh … help?

I am me, and I need help to get through the ups and downs. Mostly the downs, but then, sometimes everyone needs a boost to get to the top.

I hope all are having a wonderful day.

Posted in Advocacy, Day-to-Day | Tagged , , | 4 Comments

Major Slumber Party Rocks Everwild

Jon’s brother and sister-in-law brought five of their friends down for the 2008 Marine Mud Run and spent Saturday night with us here in Blacksburg. On Saturday morning, Jon cranked up the water heater and that afternoon, one-by-one, seven people showered away mud and muck from every crevice (and then some) until they were all once more squeaky clean. They stuffed our fridge full of beer — So. Much. Beer. — and hardly dented it before supper time arrived. Jon will be drinking beer for days now; an offering even the gods can envy. I hope he likes it, too, because I’m not much of a drinker.

Levi was beside himself the entire time, convinced we must have hit the doggy jackpot and had won an extra set of 7 people just for HIM. He made himself dizzy dashing about to collect all that love and devotion from every body that moved, sneezed, or flicked a fly (they are, after all, signs of worship, yanno.)

The evening led us on to Boudreax’s for tasty Cajun style eatins where, alas, one of our intrepid lasses discovered she’d left her ID all the way back in Maryland. Dinner then consisted of her comrades devising creative techniques for getting her thoroughly intoxicated while our young waitress was distracted. Once the party moved on to play pool at the River Mill, the bouncer there at the door took a more “spirit of the law” approach to assessing her age for himself, and backed by half a dozen sad puppy dog looks, took us at our word that yes, she really was 28, and allowed her to pass. Unfortunately for an exhausted me, by then it was time to pack it in at the late, late hour of 8:30 p.m.

Jon was kind enough to drag me home, leaving me to watch BloodRayne alone (an endeavor I don’t recommend unless you are truly masochistic and able to endure horrible, horrible torture for more than an hour at a time). Surprisingly enough, he returned with 3 girls in tow (the lucky devil!) less than an hour after bringing me home. Blessed with an excuse to turn off the worst vampire movie EVER, we nestled around the kitchen table with coffee or tea, and yammered about the events of the day and the state of the world in general.

By midnight, everyone had straggled back home, and there we sat, scrunched in our tiny kitchen until everyone began to peter out of energy and drift off to bed. Up until this weekend, we’ve never housed more than 3 people here at one time, so naturally, I fretted about how comfortable we could make our guests. It turned out most of them brought air mattresses, and although space was a wee bit limited, no one had to sleep standing up or hanging by their toes in a closet (which is good, because I think they’re all full).

They’d planned a leisurely trip home for Sunday; one that would lead them through wine-tasting country, so Jon and I sent them off with their tummies full of pancakes. It was incredibly good fun. I did get to show off a few of my art projects (namely recycled notebooks and journals) which always excites me, and then afterward, Jon and I slept for the rest of the afternoon (it was the mere mention of going out for coffee that did it). Jon had hovered over me Thursday through Saturday morning making sure I didn’t over do the cleaning and preparation, but he’s only one man and can’t keep me in one spot for very long. He’s better than most, though, and to think … he doesn’t even own a pair of handcuffs.

I’m counting this post among my list of Things I Get to Accomplish Today, since I prolly ought to throttle back from hyper-drive for a day or two. That means more coloring and less cleaning; yay, I win!

Posted in Day-to-Day | Tagged , , | 3 Comments