Falderol

Jabberwocky

I'm not sure how to title a post that will catch you up on my MS. I was thinking about the injections (the jabs), and well...there you have it? I'd like to blame my lack of creativity on these lesions, but that probably is too convenient.

We're already on Month 3.75 of the drug therapy, and I can't really believe it. I now have a new nightly routine: at 10:15, I come back from the gym, shower, prep the kit, stab myself in one extremity or the other, and then hang out on the couch icing for 15 minutes. Soon, I'll be coming back to the campsite and trying this whole thing without the ice pack. Maybe a cold fish will do?

Yes, we're going camping and fishing in October and to hell with the diagnosis. I am doing a lot of things that I meant to do before now, like getting back into dressage and taking more weekends to do nothing at all. Of course, I'm also quietly changing a lot of my life. Goodbye, pasta and bread. So long, milk and ice cream. It's been nice to know you.

No one knows if there's a connection between MS and diet, but what we do seem to know is that certain foods have a tendency to increase inflammation in the body. Inflammation is now a bad word, right up there with the "c*cks*ckerm*therf*ckers" I mutter after a particularly unpleasant jab. I'll go in for real food sensitivity and allergy panels soon, although those aren't exactly conclusive themselves. In the interim, I'm cutting way, way back on gluten and dairy. Like, down to 10% of what I used to consume, and hopefully less than that. Yesterday, I realized I was eating an egg salad sandwich hastily purchased at work. I removed both slices of bread and started picking at the salad...which of course has dairy. And is made from eggs. Not going so well yet, this effort.

I'm also working out daily, getting enough sleep, and having conniption fits over every phantom symptom and unusual anything that I feel. There are bigger discussions pending -- yes, you can have kids with MS, but when I know that the one thing I don't handle well is lack of sleep, is it really worth what might happen to me?

The crappiest part is the not knowing. I might be fine; I might develop something really, really unpleasant. Most days, I don't fret about the worst case; there are days, however, when I read a particularly dire MS story and wonder if I can ever be strong enough to handle what might happen. I think that's my biggest fear: losing my physical self, would I also lose much more?

It doesn't merit thinking about, but it is so damn difficult to turn off your mind in the still nighttime. 

That's where I am. How 'bout you?

MS accepts a blind date

I spent this morning on the phone with a Surfer Dude who apparently moonlights as a representative for the World’s Friendliest Drug Company. It’s a bit unreal, this detailed enrollment process that I have to go through for the privilege of giving myself daily jabs.

“So when were you diagnosed?” Surfer Dude asked.

 

“Well, Monday,” I said, trying to avoid any complete sentences that might be overheard by my cohort in the cubicle farm.

 

“Woah,” Dude replied. “So this is like totally new for you.”

 

“Yep,” I laughed. Must be some kind of defense mechanism, laughing, because I’ve been chuckling a lot these days at completely inappropriate topics.

 

We went through a host of topics that ran the gamut from the usual questions to the more surreal. Dude offered me several complementary programs from the WFDC; at one point, I felt like I was signing up for the world’s strangest dating service.

Guess my Master's of Science will be my second MS.

So there's that then.

The waiting game

So I don't have the attitude of Alright Tit, and I often lack Billygean's elegance, but I think both blogstars would agree: waiting is balls.

After the two hour MRI, which I'm still telling people about like it's some kind of long distance athletic accomplishment, one of my dear friends flew in from Seattle for a weekend diversion. We had a great time strolling downtown in the gorgeous summer weather, oogling the throngs coating the beaches, and eating so much that I'm still not hungry 24 hours after she left. For the most part, I forgot about the impending diagnosis (or the equally unnerving possibility of no diagnosis at all). Still, every time we passed someone in a wheelchair, I had to look away. As we rode the bus to dinner, a woman our age got on with a cane, and her partner stood like a shield in front of her as she took a seat in the crowded aisle. I wondered if she had MS, a thought I'd never had before when I saw a perfectly healthy looking young person carrying a cane.

Of course, there are morbid perks to the possibility of having a serious lifelong illness (god, I hate typing that phrase). It's much easier to justify the $30 dangling-to-my-ribcage necklace at Urban Outfitters: "Well, I have to look good now, and why shouldn't I?" I can eat my face off at the tapas bar: "Screw it. I might have MS: I'm ordering a second plate of potatoes with garlic aoli." I also don't abstain from beer, chocolate, ice cream, loads of pasta; since I'm sweating buckets at the gym these days, fearing I won't be able to work out like this in the future, I'm suddenly able to bump up my carb load by a factor of ten or so.

Two hours in the tube!

I think I've spent more time in the MRI machine this month than I will for the rest of my life (I hope??). My right arm increasingly resembles a permanent pincushion, with a series of half-healed spots where we've drawn blood and inserted IVs. I think it's offended that I keep choosing it, but the left arm veins are shite and appear to be shriveling further, perhaps because they sense danger.

This evening was the usual: check in at the front counter, leave SuperGeneticist to his post in the waiting room, change into surgical gown and pants designed to fit the Incredible Hulk, waddle around the waiting room hoping the pants don't fall down in front of other elderly patients who might be sensitive to bare-behinded obscenity. Pop some anti-anxiety medications to deal with Donut Claustrophobia, strap on an eye mask to avoid seeing the Iron Mask-knockoff they clamp over your face, and go to town with the crazed jackhammering MRI sounds.