Why Not Me?

Anybody who follows this blog knows that I do my best to stay positive. I have an amazing life ~ great family, supportive friends, financial security, a lovely home…and the motto I stay true to is “why not me?

I’ll explain. It’s no secret that I find wallowing in self pity unacceptable. Shit happens to all of us (it’s called the gift of life!) which is where my stance on “why me?” comes from. “Why not me?” I say. Would you wish your cancer diagnosis on your best friend? Of course not. Would you be happier if your sister had MS? Of course not. Buck up and own it, I say.

We all are familiar with waking in the night and worrying about the pipes bursting, the kids falling into a ravine, the Visa police showing up at work to shame you for your credit limit excess, your dentist calling you out for only flossing every other day. Of course these things don’t happen. But if they did, you might be thinking, “why me?”. Well duh. Floss your teeth, check your pipes, pay your Visa bill, teach your kids the dangers of ravines. We all must take responsibility for our own actions.

But when the universe throws you something out of your control (i.e. MS) it’s easy to fall into a state of self pity. I get it! And I am totally accepting that for whatever reason, I pulled an MS lottery card. It stinks, but as trite as it sounds, it is what it is.

Ok, so obviously I’m a super evolved, rational and gentle saint. Tonight however, I am fucking mad at MS. I want my “old” life back. I want to get out of the car and run inside for a second. I want to walk around the block. I want to bend down and pick something up without falling over. Hell, I want to just walk to the kitchen without holding on to anything. I want to not be hot, tired, dizzy, addled. I want to not have everything be such a big deal. It’s exhausting on top of being exhausting.

I find though that as much as I rail against it, curse at it, try to stomp my feet (no can do without falling over) at it, scream and cry at it, it remains the same. Yes I’m mad, and yes I’m frustrated…but would I wish on you? Not in a million years. You have your own burdens to bear. This one is all mine.



Through the Looking Glass

I’m trying a new trick. My goal is to not touch anything. Fellow MSers will know what I mean, but for the rest of you firmly planted sorts, it works like this. The game is to stand up from the couch without using your arms, walk through the house without touching the walls, or put your pants on without helping to lift your leg. Sound simple? It’s not!

Today as I was contemplating arising from the toilet without pushing off using the counter (sorry if TMI), I was thinking about things I wanted to do today, and fondly remembered those days of leaping up and just getting crackin’ ~ from the couch, out of the car, out of bed and on with the day!

I’m not going to sugar it up. I miss those days. I mourn my ever changing and challenging inability to just do shit when I want! This thought eventually meandered into a recording studio analogy (no surprise for those who know me) and I realized all that has really happened is that I’ve switched sides of the glass.

For the first 50 years of my life I was in the main tracking room in front of the mic, belting it out for all to hear. Dancing, swaying, singing, performing, entertaining.  Now, I’m on the other side ~ in front of the console and living, finessing and capturing life from the chair. And, as much as I’ve always admired the performers, I know how much magic happens on the other side of the glass in the control room.

This is where the sparkle, the nuance, the punch, the subtlety and the humor is added. It’s the finishing touches on a masterful performance. It’s a caress and a slap. It’s a laugh and a cry. It’s the icing and the cherry. It’s the pièce de résistance.

Now don’t get the idea that I’m giving up on living here or anything. I’m just learning to hone the craft of living from another perspective. The mental change over is helping to ease the sometimes foot stamping, hair pulling, tantrum inducing effects of this goofy MS. Plus this way, I still get to hang out with the band.



So Far, So…Good……zzzzzzzzz

After 13 -1/2 years, close to 5,000 injections and nearly $700,000 I have finally moved off of my trusty “bruise juice” Copaxone and moved on to a new pill for treatment of MS. Hooray! This is big news by anyone’s standards (especially for the diabetics in my life) but I have been suffering big time from what is called “needle fatigue”. This is a condition according to MSers whereby the daily injection of….oh for Pete’s sake, it’s when you are bloody sick and tired of shooting up, plain and simple. The initial plan is to rotate and keep track on this nifty little body part chart the drug company gives you: Monday left arm, Tuesday right arm, Wednesday left leg, and so on. This results in a series of nasty little dents in your biceps, thighs, hips and belly. In my case, I don’t carry enough meat on my arm or leg parts, so I resorted to injecting in my rather ample belly and hips only for the last 5 years or so. The Copaxone made sure to increase the dented, blobby mass of those areas for me as well. Yay!

But – pshaw! That’s all behind me now. This new drug, called Tecfidera, is made out of dry cleaning fluid or some such disagreeable thing and like all MS drugs they have zero idea how it works. I swear I was a Guinea pig in a former life because I get these RX’s and go, OK! let’s pop some formaldehyde! Does it contain resin, plastic and particle board bits? Bring it on!

Not surprisingly, there is a long list of not so pretty side effects that goes along with the prescription. The main ones are flushing, itching, projectile body fluids of all types, weight gain, hair loss and so on. Not one to go marching into this new pill popping venture unprepared (I was a girl scout leader after all), I loaded up on baby aspirin (for flushing), Benedryl (for itching), Gas-X and probiotics (for the intestinal distress). Good to go.

I took my first pill and waited at home. Nothing…nothing…nothing….uh oh! My skin is starting to get prickly. No worries ~ I’ve eaten, taken an aspirin and now take a Benedryl to nip this in the bud. And it works! After about an hour, I head over to the store to exalt over my success with my first pill to Anna. I am happy, she is happy ~ we’ve read some horror stories and this is turning out to be a cake walk.

About an hour or so later, I start to feel really droopy.  I can’t keep my head up or my eye lids open and so excuse myself to go home and take a 3 hour nap. Anna suggests that if I can avoid the other nasty effects and the pill only makes me tired, that’s not such a bad thing. I agree, but am thinking I can’t go through the day feeling this fucking tired all the time ~ I’ll become bed ridden! Forget the needle fatigue, this is just plain old fatigue.

After a little bit of research and some advice from  a few seasoned veterans, I realize much to my chagrin, that the Tec doesn’t cause fatigue, but boy Benydryl sure does. Doh! of course.

So now I’m on my second week, taking the full strength dose and thinking I’m feeling pretty good. This is a cinch! It seems I have a cast iron constitution and no little systemic methanol is going to slow me down. I woke up this morning perky, raring to go, and planned my day. First some yoga, then some errands, then a nice dinner, then my drum class.

It started in yoga. We were working on balance, always a particular challenge for me. This time though, I found that in addition to falling over I had big tears running down my face. Huge crocodile tears. Non-stop emotional release tears. Not being much of the crying sort, I brushed them aside and soldiered through class (kind of weeping the whole time) and then came home and just sat down. For about four hours. The errands went out the window and I canceled my drum class. I had to hit the store though for some groceries so I ran into Trader Joe’s. The nice clerk asked me how I was doing in a standard chit chatty sort of way as I was paying and I started to cry. Wow, really!? Choked up over bananas and quinoa?

Despite the fact that I’m bloated, sobbing and half asleep most of the time, I’m hopeful that this truly is my panacea for MS. Considering I can’t face another needle, it damn well better be!


Thanks For The Memories

I find it hard to believe, that even though I’m pushing 57, the memory banks are completely full yet. This leads me to think that the lapses that I’m now discovering daily might actually be linked to the MS. Rather than there being no more room,  I visualize my foggy brain unable to keep thoughts contained and the mesh of my cranium like a sieve, letting things seep out as deemed unnecessary.

Question to self: just what is the criteria to remaining “necessary”? Are there parameters for keeping one memory and letting another one ooze out? Case in point ~ I woke up from a dead sleep the other morning singing Peace Train by Cat Stevens, yet could not remember reading a super fun story with Elizabeth the week before. I mean Cat Stevens (now Yusuf Islam) recorded that song in 1971 and I’m pretty sure it’s been close to that long ago since I heard it. And Peace Train? Give me a break. Moonshadow probably would have made more sense. No, wait, it would not have. Brain ~ can we just let Cat Stevens go altogether, please?

It’s alarming to try to put my finger on a word or phrase to use in a sentence and have it just edging about the periphery. Sure, this happens to me too!, you’re thinking. But I don’t mean things like I read a “laudatory blurb about laudanum”. I”m talking about words like “required”, and “graham crackers”. Everyday, simple things.

The girl’s paternal grandmother suffered short term memory loss as she grew older. As she lived some distance away, they only saw her every few months. These short visits were always packed for her though, since every time the girls would leave the room and come back in she’d be super excited to see them again, like they’d been gone for ages. Elizabeth of course took full advantage of this, thereby deeming herself a genius in her Grandma’s eyes by correctly guessing that the Giants were probably going to smack one outta the park in the 9th for the win. Again.

Like most things related to MS, I find myself somewhat addled and vaguely amused by what is going on with my body and mind.  I feel this kind of memory loss may come in handy for me when reading favorite books or watching favorite movies. If only I could remember what they were…