Thursday, January 28, 2010


Probably, the hardest thing to explain to folks is the toll I pay for doing the most normal things. The extra-ordinary events come at an even higher cost. No amount of prepping, organizing, assistance, self management, meditation, or other techniques will mitigate that choosing to participate will cause me to spend time in the penalty box. It is four days after my coast trip and I still feel like I was hit by a truck. I've been in bed for most of that time, my hubbie says I have dark circles under my eyes, and my arms, hands, and left leg are driving me batty.
So, what do I do? Become like the troll under the bridge and be defined by the MonSter rather than the brave creature who dared to cross the chasm no matter the outcome? 
This past Saturday,watching the winter grey waves reflecting the unexpected gift of sunlight, spending time with friends, and reading a fantastic book; my answer to the do or not do question was easy. By Sunday night, say around 2am with my arm pain keeping me awake,I was questioning the sanity of doing such an ordinary thing. 
My bags from the weekend remain packed. The mountain of laundry is growing. And, my body shows no sign of improving. How can something as simple as a weekend trip make me pay and pay.
It isn't as simple as, OK, I shouldn't go, so don't even ask me. I want, more than I can express, to be a 'normal' almost 45-year old woman who works, gardens, cooks, takes the occasional trip and the countless other things that I should be able to do without weighing whether my body will go into an MS death spiral. See the Amazing Janine as she attempts to live while balancing precariously over the precipice of MS.
All I know for sure is that for today, I will take the best care of my self that I can and savor the memories of this past weekend. And, leave the future to sort itself out. 
I am aware, always, of God in my life. With Him daily survival is a soul thing. He is the constant in my lowest times, contented times, and when I am at my best. I read this Psalm and am reminded of this.

A Pilgrim Song

 1God, I'm not trying to rule the roost, I don't want to be king of the mountain.
   I haven't meddled where I have no business
      or fantasized grandiose plans.

 2 I've kept my feet on the ground,
      I've cultivated a quiet heart.
   Like a baby content in its mother's arms,
      my soul is a baby content.

 3 Wait, Israel, for God. Wait with hope.
      Hope now; hope always!

Psalm 131

Tuesday, January 26, 2010

Complicated Math Equation that is Life with MS

I am too tired to write much here. This past weekend a dear friend or two helped me to overcome the inertia of MS and I made it to the coast. It was one of those rare winter days of blue-sky and sunshine that keep us Oregonians returning to the beach in these long rainy winter months. So a huge thank you to the 'angel' who helped me pack and prep on Friday afternoon. Long gone are the days of dropping a few things in a bag and zipping out the driveway. And, also, thank you to my cabin mates who made it so easy to be needy! I will definitely 'pay' to play and hope to not do too much this week (as if I have much choice). 

The view from the cabin

How I Spent my Saturday

I am home, curled up in my nest and thinking fondly of getting away from it all. Something I can no longer do without a flotilla of support logistics and post event recovery. Makes me tired to think of doing it again any time soon. But, hey, at least I managed one more time to take a weekend trip and who knows, maybe when I do the complicated math of prepping, packing, planning, subtracted from the pluses of wandering, hubbie breaks, and time with friends, in ratio to the cost of the aftermath, the occasional trip will come out on the plus side of the equation that is life with MS.

Friday, January 15, 2010

Just call me...

I am not sure when I started it, but I can express my identity with two symbols. And, I find that it sorts the wheat from the chaff to see if folks can figure it out. I often sign my name


and, for those who don't know, my first name in Janine. The last four letters are n i n e. Any way...

Things are piling up around here: worries (new van, new heating system, health of loved ones); sadnesses (son returning to Massachusetts and soaring on with his life); and this gosh danged, pain in the patooty, party crashing, boring, insufferable illness. Bluntly put-I Just Hate It.

So, given all that I think I will sign my name for now as:


but, if I stop and factor in a few other things, maybe I can up that a bit. My weekly visits with Marylou, who brings me books as well as wisdom and prayer, every Friday morning; the joy of seeing my son growing into a fine young man mixed with memories of a diaper butted little boy dragging books into my bed at 5am and cheekily saying it was time to get up; the thread of faith that courses through my life. And, if I let it in the many many other people and events that are sprinkled through my life like finding a beautiful agate on a storm drenched Oregon beach, I can see my way to:


and, for now, that isn't too bad.

Tuesday, January 5, 2010

Joy to the World?

My pastor, everyone calls him Barry, is known for his sermons that deliver profound truth in a friendly strait forward manner. This past Sunday he dove into one of the more confounding aspects of faith—the call to be Joyful.
Joy and happiness aren't the same thing. Happiness depends on circumstances; the size of my bank account; a tender kiss; a perfectly done pot roast. Joy flows endlessly from my faith. Joy is a reflection of God in my life; not the challenges of living from day to day.
So, his sermon was full of practical ideas to experience Joy: focus on what is good; do things for others; spend time with God every day; make a list of what I am grateful for. I was inspired and ready to make every effort to choose joy and not rate my life on a 'happiness' scale.
This lasted about three hours.
Whether it was my trip to the hot springs the day before or just generally doing more with my son or just MS rearing its ugly head; by mid afternoon I had to acknowledge that an exacerbation was happening. I am weaker all over, my pain level has skyrocketed; and I found myself curled up in bed with Joy the farthest thing from my mind.
It is Tuesday afternoon and I find that I can finally take a breath. For me, there is always an adjustment period after my symptoms worsen or change. Will this new symptom be permanent? Can I endure the pain and not be such a witch? How far will this slump take me down. The uncertainty of life with MS is putting on a full-scale dress rehearsal and I am not impressed with its efforts.
So joy versus happiness. Looking back over these past few days I can see that my faith life is there, a steady undercurrent to the craziness. 
I have to remind myself that Joy doesn't mean I have to be a faky, happy, Chatty Kathy doll. That will never be who I am. I am, at times, snarky, hopeless, and bereft. I also know euphoria; peace; and contentment. Under it all, like a subterranean river, flows Joy.


 The LORD has done great things for us, 
       and we are filled with joy.

Psalm 126:3
and, thank you to Barry for 13 years of challenging me
to look at life through a different paradigm

Saturday, January 2, 2010

Living in a high energy environment

Even a mosquito doesn't get a pat on the back until he's well into his work.

Through with the holidays and well into what counts for winter here in Oregon. My son is home from college and his girlfriend is visiting so it is busier around here than normal. I marvel at the energy and enthusiasm they both bring to the table. It will be great to see what the coming years bring for them. 
We drove an hour into the mountains to a hot spring pool and I was able to get into the pool! It feels so fabulous to be weightless, and I wish I could find some way to be in the water more.
We spent New Year's eve with some dear friends and their 6 month old (today!) daughter. I think I could just sit and hold a baby for hours-although it is nice that I can pass her back any time she fusses or I am too tired. I so appreciate that her parents trust me to know my body and how it is functioning and my ability to hold her. She is at that delightful stage of happy, drooling, giggling, at peace with the world. Just about the best way I know to bring in 2010.
I need to find some better strategies for dealing with pain. This unrelenting aching and muscle spasming drives me mad. I almost cried on the way back to our home today. Stretched out on the seat in the back of the van, my arms were hurting so badly that I couldn't fall asleep. And, right now, I probably shouldn't be using my hands or arms for that matter, but I am stubbornly ignoring the pain and writing this.
Looking forward to another road trip on Tuesday to see a dear friend in her new job. I will have to rest up all day on Monday in order to be able to go.
I yearn to go and be busy and yet, my body seems to be less and less able to handle it. For now, with my son here prodding me along, I am going to go. In spite of pain, fatigue, and mental fogginess I am choosing to let some of his youthful energy prod me along.