Category Archives: It’s all about ME!

Posts about my trials and tribulations. Or maybe just how my day went.

This time last year…

…I couldn’t walk.

Okay, maybe I could do what might barely be considered by some to be ‘walking’…but only with significant effort. With the help of crutches. And not without experiencing excruciating pain.

This time last year…

My body, especially my legs, were wracked with a sudden onset of psoriatic arthritis. Inflamation in what felt like every muscle, tendon…hell, every nerve ending in my legs and feet. Pain everywhere.

This time last year…

…I feared the bathroom. Not because the room itself was inherently scary, but rather, what it represented scared me. The effort, pain and challenge of getting to the bathroom….sitting down (rather than falling) and then, getting back up again, was always an exercise in pain, suffering and humiliation (nothing like sitting in the john for 40 minutes because you can’t get up and really don’t want to have to call out to your kids for help standing up..or for them to see the tears on your face because you’ve spent much of that 40 minutes crying).

This time last year…

..’Hope’ was a thin, fragile thread that I alternately clung to…and occasionally lost grip of.

There was a piece today on NPR about folks with Multiple Sclerosis. In listening to their stories (and the one of another person who has become disabled due to illness) I so totally empathized with their plight. Feeling your ability to move slowly fade….feeling sorry for yourself…and even…feeling like you are, somehow to blame for your illness.

I’ve been there.


It feels like words don’t do justice to the kind of mindspace one gets to when your world changes so drastically for the negative. Pain. Fear. Loneliness. ’Lather, rinse, repeat’.

Lying there stuck living in a room in my house…camped out in a recliner…unable to even get something from across the room….the things that helped keep that little thread of hope alive were my family, my boss & team at work, and my friends. My family both tended to my needs that I couldn’t do for myself…My boss, because he was incredibly understanding and supportive (allowing me to work from home for a significant period), my team at work as they supported me too and made sure everything ran well when I was unable to come into the office…and my friends…well, If ever I questioned the value of the internet/’social networking’/etc….and it’s ability to connect to people far away….well, this last year taught me that it has the power to help keep you sane when your body is falling apart. That is, if you have friends to reach out to…or just read the day to day goings-on of them and their life ‘on the outside’. And I, apparently, am blessed with many of them.

So…as you can probably tell…last year was….rough.

This time THIS year…

…due to the miracle of modern medicine, I am better. After starting on one Arthritis medicine last February, in July the docs started me on a second medication, Methotrexate, and after a few months on both meds, things started getting noticibly better…. I had progressed from crutches to a cane at that point and then found I needed my cane less and less as time went on under the new meds (haven’t used it in 4 months now). Things that used to hurt, hurt less…and less…and then, one day I noticed that I could do those things with no pain at all.

Yes, this time THIS year I am feeling a damn sight better. So much so that I have started doing things that I haven’t done in over a year:

I’ve gone for walks.

I have started woodworking again (now that I can actually stand for more than 10 mintues at a time).

And most recently I started working on the long-overdue JukeBus renovation project ( Getting ready to put a new floor into the bus, then build some seats, and paint, and….

This time THIS year…

I have come to a place where I am living the dream. Nothing so major as I am sure other folks dream of. Just a little dream born of a kind of hope that, a year ago, I could barely hang on to….the hope I could someday do something as simple as walk across a room again, without crutches…without a cane…without pain.
As I wrote this I stopped a few times to get up and, before I sat down again, well, I danced a little jig. Nothing particularly difficult or, for that matter, pleasant to look at. But being able to move both my legs…to sort of hop up and down….to dance (if you can call it that)….feels only slightly short of a miracle to me now.

In fact…almost every day I find something feels that way.

A miracle.

Maybe not a full blown “raising Lazarus from the dead”, ”I got cured of cancer” or “finding-a-baby-alive-at-the-bottom-of-a-collapsed-building” miracle, but for me, a miracle nonetheless.

There still is that tinge of fear way back in the small of my brain that says “it could come back….the meds could fail…the arthritis could come back”….. but I much prefer paying attention to that shiny ray of hope that is surrounding me now…the one that says…’Well at least you have today….and today is pretty damn good. Enjoy it while you can and we’ll deal with tomorrow when it comes.’

And for today, that is good enough for me.

Love you guys.


JukeBus, Part 1…

So I am finally  start working on my long-overdue project of renovating the school bus I bought in August 2009.

The Back Story:

In 2009 I was going to be running a a kitchen for about 75 people out at the Burning Man festival in Nevada.  As I had hassles in the past with truck rentals for going to Burning Man, I decided to see if I could find an old schoolbus that could serve as a combination equipment hauler and camper for the trip 9and subsequent trips).   My friend Jim had also talked about being interested in getting a bus for group events and he went in on the bus purchase with me.  I ended up finding a great old  “Shorty” Schoolbus for about the same price as a truck rental would have cost me.

The bus was a 1979 Ford/Carpenter “Shorty” schoolbus…engine in great shape and it had some neat features.  The  previous owners had outfitted it for hauling  rafting gear, and had taken it all across the western US and Canada on rafting trips.  Three of the four friends had moved away from Portland and they no longer used the bus and didn’t want it to waste away, so they were selling it (and wanted someone who would get good use out of it).

So, I bought the bus and took it to Burning Man.  While the bus made it there and back, we did have a few glithes along the way (due to what ended up being  a simple loose wire).  Once we returned, I planned on taking the winter to renovate the bus and get it into tip top shape.

Ahh, the best laid plans.  In late 2009, I was hit with a nasty case of Psoriatic Arthritis that pretty much leveled me for much of 2010.   The bus project fell to the wayside while I focused on getting better.

Now I am better and feeling up to the challenge, so a few weeks ago I began planning for starting up the bus project again.  Over the last year I’ve been following a number of forums for ‘Skoolie’ and other bus conversion owners and have gotten plenty of ideas on how to make my bus a fun vehicle for tailgating, equipment hauling and, eventually, a kind of  portable kitchen for events.   Now all that remains is putting those ideas into a plan and making it happen.

I’m going to try to keep track of my progress both on the site and here on my blog.

So, stay tuned for more info and images as the work on the bus progresses.

-Chef Juke

BACK in the saddle again…

Well, if not the saddle, then the computer chair.  I’ve just come in for my second day in the office again after an extended period of working from home. Still moving a little slow….walking with cane..but walking and feeling a tad better each day.

For those who don’t know, the main reason for my extended period away from the office is that back just before Thanksgiving last year I totally tweaked my back.  I mean TOTALLY.  Woke up one morning and could not get out of bed.  Pain in lower back and everything else (upper back, torso) just seemed locked up.  Took near 30 minutes to get in an upright position and almost as long to make it the 15 or so feet to our bathroom.  ACK!

The next 2+ months since my back ‘went out were a bit of a perspective changing experience for me and, I have to admit, I experienced more depression during this period than I can recall during any other period of my life..  But now that I can both see (and feel) progress and realize that my earlier fears of being wheelchair bound for the rest of my life were unfounded (okay, a bit overdramatic, but definitely seemed like a realistic outcome a few weeks back at 3AM when I couldn’t get out of bed to save my soul).

During the period after my initial pain came on I went to…the doctor….a physical therapist….a chiropractor….got an xray…an mri….got drugs…..then more drugs.   Somewhere between Thanksgiving and Christmas I started using a cane.  Pain had settled into my left leg and was a bit painful walking without the cane.  By New Years I was on crutches and walking without aids had become excruciating.  When I put weight on my left leg, I would feel sharp pain shooting up the upper back of my left leg into my left buttock….along the sciatic nerve.   On a number of occasions, this pain was severe enough to make me shriek in a way most folks would associate with that of a little girl who’s had a spider put down the back of her dress.  Loud. Unabashed. Shriek.

My boss at work was very supportive and encouraged me to work from home on days when I had too much pain to make it into work.  Over the next two months, this became the norm rather than the exception.  Just getting up was a challenge and as the pain seemed to increase rather than subside, I found myself moving less and less (hey, it HURT when I moved!), and ultimately being ABLE to move less and less.   One truism about back and muscle pain is….if you don’t find a way to get them moving and USING those muscles, they won’t simply get better on their own.  Rest only goes so far where back muscles are concerned.

My downward spiral hit bottom just about the new year.  By that time I found that I needed crutches just to get the 15-20 feet to the bathroom.  Had moved into our home office which we set up with a la-z-boy recliner (graciously donated by a good friend) that let me sleep without disturbing my wife, but more importantly, help me be more able to actually get up in the morning, just by pushing that lever forward and getting me up into a sitting position (something that would take a lot of wrangling, with help from my wife, and about 15 minutes to accomplish otherwise).

The doc had upped my medication from anti-inflammatories and muscle relaxers to real pain relievers (Percocet)….but by this point, while the Percocet helped with a lot of the minor aches and pains and general discomfort around my upper back, it wasn’t enough to fully deaden the pain I felt when trying to walk.  This was about the time when I started questioning whether I would ever be able to walk like a normal human being again.

The turnaround came about 3 weeks ago when I finally heeded the advice of a good friend and went to see her friend Priya who was a Massage Therapist.  Priya talked with me longer than any of the other health professionals I had seen, all before laying a finger on me, and she was the most ‘right on’ in her diagnosis beforehand, and during the massages (as she would tell me where I felt tight, and it all tied into where I was having problems).  After dealing for two months with folks who were talking in generalities, or taking a drug first- find problem later approach, she pegged that my problem was that my whole back (all the muscles) had been really tight when the problem first occured and that left no ‘wiggle room’, the other muscles that might have taken up the slack for the ones that were hurting, simply couldn’t.  Once she got those muscles moving again, everything became easier.   When we had our second session, I literally felt some of the key muscles that had been so tight “unlock” during the massage.  Afterward I stood up straight for the first time in about 2 months and could walk around the room without the crutches I came in on.  I left her office with tears in my eyes.  If I hadn’t fully realized how despondent I had been before, the relief and gratitude I felt while I walked to my car (actually holding my crutches in the air in front of me) was a clue.

So, here I am today, back in the saddle…not at a full gallop, but on my way.  As I said, still using the cane for a little support, but feel like I need it less and less each day.  I now am making sure to take a break and stretch at regular intervals during the day (helped along by a great piece of software called RSIguard) and am looking forward to the day when I will be walking without a cane or even a hitch in my giddyap.

Over the last few months, I recieved a lot of really kind kind and encouraging words from my friends.  Also, I have recieved a bunch of great advice & suggestions, some of which I will share below:



The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief – Clair Davies –

Fix Your Own Pain Without Drugs or Surgery – Jolie Bookspan –

Pain Free: A Revolutionary Method for Stopping Chronic Pain – Pete Egoscue –


Theracane – A self-massaging tool great for reaching and treating triggerpoints –

Nada Chair – I am using one right now as I type this.  a GREAT device for helping keep your back posture while you sit in ANY chair –

Percocet – a lovely drug that – uh, wait.  Oh, never mind.

RSIguard Software, Stretch Edition – This software is designed to monitor your computer use and pop up reminders when to break, suggest a particular stretch to do, etc.  It seems really simple, but actually works really well.  How often have you sat at the computer, think you will just work for 15-20 minutes and next thing you know it’s hours later.  This software gives you very useful reminder, not just that you should break, but what to do during that break to keep from developing Repetitive Strain Injuries and also, as applies to my case, keep your back healthy.  They have a fully functional 45 day trial which I highly recommend –

I cannot stress enough that my turnaround after 2+ months of Doctors, Physical Therapy, Drugs and more, finally came from finding a great massage therapist as noted above.

Okay, this is one that everyone probably knows, or would intuit, but as none of us are getting any younger, and given how much of a wakeup call this was for me, I am just going to say it anyway.  If I didn’t appreciate the need to keep some regular physical activity as part of my ongoing routine before, I sure as hell do now.  Some of it is just incorporating stretching, walking around and other breaks in my workday.  More is making sure that I am not spending too much of my life at the computer as opposed to out and about.

Okay, enough preaching from me for today.  Gonna get up and take a walk around the office.  You should get up too.  At the very least, stand up and take a good long stretch… feels good, doesn’t it.



Mom’s Day…

I came across this piece I wrote for my Mom a few years back for her birthday, and thought it was wholly appropriate to pull it out for Mothers Day.

mom-001A long time ago in a place far, far away…

The first thing I remember is WAITING. And play-dough.

Waiting for my friends to arrive for my 3rd birthday party and while I was waiting I kept looking at the home-made play-dough my Mom had made.

My Mom was cool that way. She did neat things like make home-made play-dough.

Home-made play-dough was MUCH, MUCH better than the store-bought, trademarked kind. Well, mainly because it tasted better. Salty. This was no pansy plasticised store-bought play-dough, THIS was the real thing. Hearty, stick-to-your-ribs play-dough. Bet the Donner party wished they had had some of THIS stuff with them that winter. Things might have worked out differently.

Anyway, later that day all my friends came and there was the usual chaos that happens when you get a room full of 3-year-olds together. The only other thing I remember from that day was a white cake with a cherry on top that I ate as soon as I had blown out the candles.

Next thing I remember was playing in the playground across the street.

My Mom would take me there to play in the sandbox and swing on the swings. One summer night there was a fire in the exterminator chute of our apartment building and my Mom took me and a neighbor kid over to the park in the night and swung us on the swings while the smoke cleared out of the building.

Next would be Riis Park Beach. When Mom would start telling me to get ready to go out and I asked her “Where are we going?” she’d just answer “Crazy”. If she had her brown vinyl bag with her when she said it, the chances were that we were going to the beach.

Then there was the Cookie & Lemonade stand that I set up with my friend Jerry. Well really my MOM did all of the work, but it sure felt like it was our own little venture.

Lemonade and Cookies...and funny hats
Lemonade and Cookies…and funny hats

Cool stuff.

If I was to remember one recurring theme growing up it would be me and my Mom travelling. Either by car, boat, train or plane, it sure seemed that we were always on a new adventure somewhere… Canada, Norway, Georgia, Cape Cod, New Hampshire, New Jersey…Heck, even little jaunts along the West Side Highway would become an adventure (especially the time when the car broke down on the elevated section with me, my best friend Jerry and his sister Tutti in the car. Mom must have LOVED that one..)

Other things I remember…

One time when we lived in the Bronx, my Mom cursing the names of both Sears AND Roebuck (and some of their ancestors AND descendents as I recall) because of the annoying messages they sent when we got behind on the credit card bill (but a boy’s gotta have underwear!).

On our second trip to Norway Mom took a bag that was a little too heavy and unwieldy and we couldn’t find one of the relatives we were supposed to meet up with in one place. We spent the night in a little hotel room and I couldn’t sleep ’cause of the jet lag. As tired and sore as she was, she still managed to engage me with some card games until I finally got to sleep. Later, on the island of Svolvr in northern Norway we hiked up a trail in the misty rain. I drank glacier water out of the stream by the side of the road alongside a field of buttercups and it was the best dang water I had ever tasted. Along the way I learned about Moors and some guy named Othello and about how if you held a buttercup up to your chin, if it reflected it meant that you liked butter (I did!).

Then there was the trip west, moving to California. Mom, Me, our dog, Sheba, and as many of our belongings that would fit in and on our 1971 Volkswagon Squareback with the right front door that didn’t work. We set up a little space behind the driver’s seat where either I or the Dog would lie down when the other was sitting in the front passenger seat.

It got a little chaotic when either me, or the dog, or BOTH of us decided, while we were travelling down the freeway at 60 MPH, that we wanted to switch places.

God knows what my Mom thought as the dog and I clambered over her right shoulder, one going back and one coming front… Rest stops were wild too. Since the right front door didn’t work, anytime we were coming to a stop somewhere Mom had to ready herself to get out of the way as SOON as the car came to a complete stop or risk being trampled by an anxious Black Labrador Retriever and 13 year old boy, yearning to get out of the car.

Through it all, thick or thin, rich or poor (and we were never as poor as my Mom seemed to THINK that we were from time to time) the one thing that Mom let me know in ways far too numerous to count was that I was loved. Unquestioningly, absolutely, loved. Even when we had our fights (which in checking with my peers were extremely few and far between compared to most folks), it was still clear underneath it all that that love was there and would always be there.

Now every now and then I hear her relate to someone how she thinks she could have done this better or that better or that she didn’t know how to handle one situation or another very well. I don’t know how to get it across to her that she did the BIG things about as right as she could and that she shouldn’t worry about the little things that might have gone better.

Growing up in a world where you are exposed to so many different people, places and things and doing so with the clear understanding that you are loved unconditionally is a pretty big thing.

It doesn’t get much better than that.

Thanks, Mom…