Field Trip: The pot store, pt. 2

la-confidentialThis ain’t your dad’s marijuana. At least it certainly ain’t my dad’s marijuana. This stuff I got is far more potent than anything I’ve ever had before. It doesn’t smell like it, it doesn’t taste like it, it doesn’t even look like it. When I opened the packet, I was met with a heady aroma, floral and sweet and spicy. Inside the packets were tight buds of pale olive green with strands of bright red woven through them. Definitely not the baggie of stems and seeds and shake that I grew up with.

I’ve written and rewritten this part of the story several times. After about two weeks of investigation and testing, I’m still not sure if it’s doing what I want it to. I was hoping for a slam-dunk, a “Wow, this stuff is amazing!” moment. I was hopeful that at the very least, it would ease the painful and random Charlie-horse leg cramps that keep me awake most nights, and maybe even help me get off the drugs I take for insomnia. I was hoping to be amazed.

What I’ve found is that in the two weeks that I’ve been smoking it before bed (and often again during the night), I’m having much less cramping. Not no cramping, but fewer episodes, and less intense. Nothing amazing, but it’s better. Nothing else I tried made a dent – not stretching, not medications, not “eat a banana before bed.” Cannabis has not eradicated this problem, but it is much better. I will need to go back to The Store to talk with the pot-istas and the experts, and see if we can fine-tune the product, but for now, I’m happy with the results. I’ve enjoyed doing the research and field testing – no hardship there.

In the meantime, I’ll just be holed up in my laboratory continuing my scientific investigations. Let’s hope The Man doesn’t get all up in our business.
560Click here to buy my t-shirt! Show the world you’ve got spoons. 100% cotton t-shirt is perfect for summer. Wear it everywhere! Original artwork by Val Sivilli. 50% of profits go directly to the National MS Society.


Doing the MS Shuffle

I saw a t-shirt once that said, “I do the MS walk every day,” sarcastically referring to the well-known MS Society fund raiser. For my MS walk – or more precisely my MS shuffle – there are distinct steps. (Follow along if you’d like!)

The MS Shuffle:  Standing at your walker –

  • Shift weight from center to the left leg.
  • Engage left leg.
  • Lift right foot, either at the knee if possible, or at the hip.
  • Move right foot forward one pace, either above the floor or shuffled along.
  • Shift weight to right leg.
  • Engage right leg.
  • Lift left foot, either at the knee or the hip.
  • Shuffle left foot forward even with right foot, or, for bonus points, one pace ahead.
  • Repeat until exhausted.
  • Demerits for falling down.
  • Demerits for forgetting to breathe.

This is the same pattern for normal walking, the MS Shuffle just requires conscious attention to each part. It can actually be a very mindful, almost meditative way to walk, breaking down each step into it’s component parts and paying careful attention to each part. It becomes a sort of mantra, “Shift weight, engage leg, lift foot, step. Breathe.”

Maybe I should lay some of those Arthur Murray dance instruction foot prints on my floor to guide me around the living room. And find a very slow box step to play. Before long, all the hep cats will be doing the MS Shuffle. Remember you heard it here first!

I’m not the MS guy

cropped-avatar200.jpegMany years ago, my daughter had a heart transplant – a sudden and at times terrifying journey. It all worked out remarkably well, better than we dared hope. After her surgery, I thought it might be a good idea to have her sit with a therapist to talk about any emotional issues she might be struggling with. In the end, she didn’t really understand what she was doing there, and the take-away was that she didn’t want to be The Heart Transplant Girl. She just wanted to be like everyone else.

In much the same way, I don’t want to be The MS Guy. Multiple sclerosis persists intruding in my everyday, so there is only so far away from it I can get. But my inbox is filled with updates and newsletters and new blog posts and comments from various forums I participate in. I feel somehow obligated to read it all, as if it is a responsibility, part of taking care of myself. I could spend every minute of the day reading the latest, and following links, and investigating new ideas and therapies. I feel pulled to be an advocate for MS, for disability issues, and as a member to The Disabled Community. And on and on. I wind up not only dealing with my own MS body and brain, but I border on obsessing about MS outside of myself. As if I don’t want to miss any tid-bit of important news. It gets overwhelming. To the point where it begins to crowd out other things I’d like to be thinking about.

So although I’ll never be able to forget that I have MS (the MonSter), I try to find ways to move it at least to a side burner on the stove, if not a back burner. And perhaps for a little while each day, to not be The MS Guy.

Take a spin in my head

I wrote this after being rudely awoken, far earlier than I would have liked, by my near constant companion Jimmy.)

How about this. You wake up in the morning feeling like someone has been pounding on your left triceps.  If you’ve ever climbed a big mountain or done a long run or trail hike, you might know what this feels like. Except, this morning, you have the pain without having enjoyed the climb that caused it. It’s just there. No reason, it just aches. There’s medication, a whole bottle of it, right there beside your bed, that might, in an hour, dull the pain. Or it might not, no way to tell. Either way, as a side effect you will spend the morning in a fog – dizzy, weak, uncoordinated, disoriented. And desperately tired.  You get woken up too early every single morning with a variation of the same pain. It might be the other leg, or your lower back, or one shoulder or the other. Pain is pain, am I right? Thinking clearly is over-rated ayway.

Tell me – would you reach for the pill bottle, or decide to ride out the pain, which will probably go away on its own eventually. Or it might not. Give it some thought, if you can with that ache in your leg.

Mice and Men

So much for posting more frequently. So much for best laid plans. Anyway.

I came across this tweet from @jessokfine:

“The scariest thing about adulthood is when you realize that doctors are just fancy guessers.”

It might not be the scariest thing, but it resonates, don’t it? When I was first diagnosed, my neurologist laid out the five CRAB drugs and told me to pick one. He said that it didn’t really matter which one, they were all essentially the same as far as efficacy. Toss the dice, spin the wheel, guess. He said that my disease would either progress or not, but there was no way to know if it was due to the Rebif or just the natural course of my particular disease.

We all know what the one certainty is in life. Every day, we make the best guesses we can. We do our best to inform ourselves,  and place our trust in the best guessers we can find for advice. In the end, we’re all just guessing. There is no black and white, just make your guess, place your bet, and move on. Medical breakthroughs are just guesses that pan out. Chasing MS is mostly all guessing. It is unpredictable, and does what it does despite our best efforts. Kinda like most things, I guess.

The Littles #18. More at
The Littles #18. More at

My DX Story

The Littles #11

I got my eyes checked recently for the first time in several years. While my vision seemed fine, (the prescription is virtually unchanged) the glasses I’ve been wearing all that time have been held together with a paper clip, and it just feels like it’s time to get new ones, maybe update my look. In the course of the exam, my history of optic neuritis came up, but oddly I couldn’t remember which eye had been affected, or exactly when it was. I dug into my journal and found the information, (November of 2003, right eye) and got distracted reading about the events leading up to, and immediately after, my diagnosis of multiple sclerosis. 

In a classic case of if-I-knew-then-what-I-know-now, it was almost amusing to read of my mysterious and sudden fatigue, the gradual onset of foot drop and numbness in my right leg, in the week or so before the optic neuritis set in. Almost amusing to follow the process of the vision in my right eye getting cloudy and almost winking out. Remembering wearing an eye patch at work, and when people asked what was wrong, telling them, “Pirates. Don’t ask.” Almost amusing to read of my befuddlement and confusion, wondering what was going on. Almost. 

Perhaps I was better off not knowing what I know now. My primary care doc, when I presented my wonky right foot, may have suspected. But wisely fended me off with, “Oh, it’s probably nothing,” sparing me the panic until he was sure. I had gone to an eye doctor about the weird encroaching blindness. He seemed a bit befuddled, and mentioned optic neuritis as a possibility. I went home and asked The Google about that, and came back with multiple sclerosis. I read a bit more about MS, and after few appointments with a neurologist – and a spinal tap that did not live up to my fears – my primary doc came back with the dx. I pretty much already knew.

My immediate reaction was understandably dark and frightening. I instantly felt alone and felt my world collapsing. I wondered where MS would lead me. I wondered how bad it would get. I wandered through a few online forums looking for connection and information. I went to one terrifying meeting of a local support group (all those people with canes and wheelchairs!). Eventually I came to the conclusion that, at the moment at least, it was no more than a bother. A bit of stumbling, a bit of tiredness, and some lingering concerns that I managed to put onto a side burner. I still harbor that same concerns, tempered with a little experience and a lot more  information. A strange trip that has only just begun.