Nothing But Lemons

I'm so sick of being sick. Having MS and being disabled has been there, at the forefront of my consciousness, for a while now. 

"But I've got my brain," I've been telling myself. My body may be broken but at least my noggin is a-okay.

Except it's not. My stupid tumor has grown. It's only a teeny, tiny bit bigger, but the oncologist seemed pretty confident that it's grown over the past year. The oncologist seemed more serious than usual and the observing resident looked at my scooter, then the pictures of my brain, and then averted my gaze.

I mean, fuck. Bad Gumball!

I Am Not So Smart

A few months ago I resolved to exercise my sad, immobile body a bit - some stretching, maybe a few wobbly steps behind the rollator and, most importantly, some time on the stationary bike. 

For months now my sweet hubs has helped me onto the bike in the hopes that we might get some blood pumping through my legs. And for months I've been wanting to cry at how difficult it is to pedal the stupid pedals. 

"My legs are totally screwed," I've been thinking. But still, get up on that bike and move as much as I can, only lasting a minute or so. 

Sad, right? Well last night, as I was panting after biking only a tenth of a mile, Hubs noticed that the bike was on the toughest setting. Seriously

It's a small victory, but I'll take it

Coming Out

Hi, I'm Aitch and I have some stuff to get off my chest.


First, I've lived. I've lived a lot. I've visited close to thirty countries, lived in five countries, got a BA and a MA from two kick ass universities, danced on bars, slept on beaches, made out with loooott of guys, married the greatest guy and gave birth to the two greatest kids. I have never been one to not live life to the fullest.


Until recently, that is. See, I'm disabled. Completely, absolutely, no way to hide it - disabled. I can't walk, I often require my husband's help into or out of the shower, sometimes my legs won't bend and my muscle relaxers don't work so I have to wake him up to roll me over in bed at night, I'm starting to get a hump on my back because my once perfect posture has been felled by a lack of core strength, I can barely write anymore because I'm right handed and my right side is my bad side, and I am always, always, always  worried about pissing my pants. I own a cane, a walker, a wheelchair and a scooter.


I'm forty years old. Not eighty, not ninety, not 102. Forty. Forty years old and my mom, who also has MS, can run circles around me. I am, if not the worst case scenario, definitely a warning or bogeyman for others with MS.


It sucks, but there it is. I've put it out there, now on with the rest of my life.

Disability Is Expensive

Not that that needed to be said, but it is really, painfully pricey being disabled. And I'm not just talking about doctor's and hospital bills; ordinary, everyday things come with an additional expense - a cripple tax, if you will. Dispiriting and tear-inducing for me, downright prohibitive for most. It sucks.


What brought this post on was the need to adapt my ALREADY adapted minivan. I call my minivan Tom, but that's beside the point. Tom's got a handy dandy ramp, but now that my stupid right leg is essentially useless I decided to get hand controls put in as well.


I was trained to use hand controls before Christmas by a lovely guy, took my van in last week for the modifications and... and... it's just been a cascade of humiliation and cash hemorrhaging ever since. As if being (relatively) young and needing a hand control to drive your ramp van wasn't bad enough, there's been much discussion amongst the gimpy gear hawkers about the best model of hand control for me. The one we agreed on, that I was measured for, won't fit in Tom. There are other options, but there won't be any room for me to shimmy from my scooter to the seat. Again, I was measured for all of this so it should have been sorted out.


So after much back and forth and much of being called "dear" by the receptionist at the cripple emporium, it's been decided that, along with all the other modifications made to Tom, I need a "transfer seat." And it will cost an extra $3000 for it.


I hate this.

Good Gumball

So the Gumball is staying a, er, Gumball. Nine months since my Meningioma diagnosis and the tumor has decided to maintain its size and to continue to leave the surrounding brain tissue alone - meaning no swelling/edema. Great news!

An Homage To My Scooter

Meet Gumball

As if having Multiple Sclerosis wasn't awesome enough, I recently found out I have a brain tumor. After years of waxing hypochondriacally I have an honest to goodness tumor contained within my skull. Fuck.

The good news is that it's small, easy to get to and *most likely* benign.

I call it Gumball. Gumball's most likely a meningioma( a tumor in the lining of my brain) and **touch serious amount of wood** is content remaining the size of, er, a gumball right now. As long as he keeps that up there will be no need to go in and retrieve him.