Grace_2_Wheel: My days with MS

My Own Private War

2012-02-16T14:40:00.000-08:00

Doctors....my interaction with my neuro this morning made me feel so powerless and alone that the rage is simmering like rice cooking at a bit too high of a temp with spits and sputters of steam escaping under the lid. Since the "big exacerbation of '11" I've had these horrendous headaches. Way worse than any before. Focused on the right side of my head. Simply the worst. Then, last week, over Thursday, Friday, and Saturday, the head pain kicked into a whole new stratosphere. It was as if some living breathing entity had taken up residency behind my eye. Deep lancing stabbing pain. Pain so intense that my belly would roil and I would vomit.
One aspect of my symptoms could be described as light and sound sensitivity. It sounds oh so very Victorian ladyesque. One just needs to lay a cool cloth over ones face, stretch out on the divan, and the vapors will pass. Instead it is more like the slightest noises, keyboard taps, chewing, dog nails on plywood, fans whirring translate through my scrambled egg brain into a cacophony of white noise that slowly builds until I can't hear, can't reason, can't think. At the same time the light left on in the hall or the glow around the blinds chips away at the walls I construct to keep out the pain marauders. Maybe that is the best way to explain. Think of the second Tolkien book and the battle at Helm's Deep. Sounds are orcs, and lights are cave trolls, and pain is one of the bigger creatures, and they are all working together to inexorably destroy me.
So, carrying this Tolkien metaphor probably a little too far, I went to my doctor for reinforcements. It is important to note that I rarely ask my docs for help in any kind of 'help me, I am drowning,' kind of way. Rather I tend to do the every so often check up, tweak the meds, get me outta here type of visits. Today, I had even researched a type of headache called Cluster Headaches that are seen in MS and have many symptoms in common with what I am fighting with. I had a few papers with highlights and treatment options. I was actually, and stupidly, somewhat hopeful about seeing him.
The neuro couldn't have been less helpful. He didn't want to look at the articles I had. Summarily dismissed cluster headaches. He didn't want to problem solve what to do the next time I have a severe episode. Several times he muttered that I was already, "taking too many meds." Yet, couldn't seem to identify any that he didn't think I should take, should substitute for another, or any options to help me through this tough time. He started dictating before I had asked all of my questions. Finally, I flat out said, "Dr. What should I do the next time this happens?" He paused. Silence. Then said, "well see me in a month."
So, that is that. What is the point of going to the doctor? I have a progressive incurable neurological illness. My neuro has made it clear that he can't help me. So it is up to me and the dear crazy people who are taking this ride with me to fight the MonSter.

Credit for Your Loss

2012-02-06T10:42:00.000-08:00

Most of us are slogging through our taxes this time of year. The absurdity of some of it can make anyone scratch their head. Homeowners can only claim a million dollars of mortgage interest per year on their primary residence; now that is a limitation that few in my circle are impacted by. As huge as our 2011 medical expenses were, such a small percentage of the total is deductible that we can't deduct one red cent. Medical expenses for the chronically ill should be 100% deductible! Roughly 37 percent of my federal disability is paid back to the grantor in taxes. I can't help but wonder if it wouldn't be easier for the fed simply send me a reduced amount, since I have to give it back. I wonder what my son as a teenager would have said if I gave him $20 for a night at the movies, but said he had to give back $5.55 at the end of the evening.
The real kick in the gut, absurdest moment of the 2011 tax prep came from the State of Oregon. I felt a little frisson, akin to finding a well-hidden Easter egg, when Turbo Tax asked if anyone in our household had lost the use of two or more limbs this year. They ask lots of obscure questions looking for deductions and rarely is yes the answer. What sort of dividend was I to earn for the inexorable deterioration of my arms and legs? I pushed the Next button and read:

Credit for Your Loss: You are eligible for acredit of up to $50 for the loss of use of your limbs.
You need a disability certification fromyour county public health officer for the first year you file for the credit.

So, let me see if I understand this correctly. The three men's suits we donated to Goodwill last year merit a higher 'payday' than my three limbs. And, why isn't it a per limb credit? I received a per suit credit, certainly each limb should receive equal consideration and commensurate compensation. It is also interesting to consider that as a donatee I designate the condition of an item, which determines the amount of deduction. In Oregon, to merit my $50 I have to get out of my hospital bed, go to the public health department and be certified Utterly Ridiculous. (Did you know that wheelchair taxis charge $75 on average).

I have no plans for this blog to be political, but if you think the Loss of Limb deduction should be revisited to a higher amount and different documentation, please consider forwarding this on to your OR state senator.

Of Islands, Streams, & Parades

2012-02-01T08:19:00.000-08:00

If you spend time mucking about on rivers, creeks, and other flowing water sometimes an odd phenomena appears. When beavers are the cause, a dam forms and a shallow pond perfect for stomping and playing develops; in the timberlands. after winter storms, fallen trees can form dangerous pileups called logjams as if giants abandoned their pickup stick game; on a smaller magical scale are the tiny islands of debris that seem to hang suspended in mid current. Caught on slenderest reed or lip of a mostly submerged rock, the smallest leaf is snared and then a slightly larger stick as well. Before long an island of bits of nature's castoff form a floating island. As a child it was delightful to artfully loosen one piece at a time to see what would break the entire mass shooting down the creek: nature's pickup stick game.
Much like one of these islands of debris, I am snared and stuck in one place. A swirl of stuff has developed around my hospital bed that both supports me and keeps me locked in one place. Everything rolls past me; people come and go; and I am still here.
It is just so so mind numbingly boring. And, when I am given a project or something to do this damnable illness reminds me of why I am sitting here. One aspect of this latest exacerbation that scares me to death is how much my cognition seems to be affected. I have hours and hours with nothing I have to do. But the simplest phone errands and paper management become tangled spaghetti in my brain. Am I really the same woman who used to administer a physics research group? Yesterday the hubster needed me to call about a bill. First I had to have a helper write down the particulars because I couldn't seem to get it straight. Then not 10 minutes later, she gently asked me if I was going to call. I had no memory that he had called. Just a blank spot in my morning movie.
People pop in bearing gifts and hugs, wreathed in smiles. They seem almost like alien creatures smelling of rain and sunshine with stories of their busy-ness. The company is oh so welcome and the generosity is a blessing beyond words. At the same time, finding commonality between our disparate worlds is hard. I try not to scream or laugh hysterically when people ask me if I am enjoying the winter sunshine. I have only been outside a handful of times since Dec. 22nd and can't reach the blinds to look outside if my light sensitive brain didn't make me live like a cave troll.
Here, trapped in my island of flotsam and jetsam, while the world sails by in a colorful whirling parade, I watch in envy and awe. At this stage, a couple months post major MS gobsmack, I am making the deeply painful adjustment to a new normal. No denying that I am greatly improved since that first scary head flopping leg dangling ambulance ride. Truth is I can't reliably sit up, can't transfer myself, can't be independent. I should be looking for the pony in all of this, but right now all I am up for is hanging in for another 24 hours of watching the parade go by.

And the Oscar goes to...

2012-01-18T07:28:00.000-08:00

Drilled down, pared back, bare necessities, whittled away, stripped to the bone, narrow world view, tunnel vision: phrases like these pop into my head while thinking about the blog post for this week. My world consists of 20 plus hours a day in a hospital bed, 1–3 hours in my wheelchair, and little else.
I am at the tough phase post major MS exacerbation where the dramatic drop in function, the hospital stay, the Solmedrol and its affects are over. I am left to suss out what I have regained, what seems to be permanently gone, and what kind of life I can make with what remains.
This week brought the added blow of a dreaded lung infection and congestion. An ad is running on TV right now that shows sufferers of a certain condition with an elephant sitting on their chests; that is how my chest feels. Neurologists and the relentlessly chipper among the MS community will argue that MS won't kill you and they're right in a sort of pollyanna, rose colored glasses way. It is the infections that creep in to affected body parts like lungs and bladders/kidneys that have a way of cashing in ones ticket. {I digress into my ongoing irritation/envy/jealousy of MS as presented by the national society, "I bike/jog/juggle/climb mountains and have MS, see how great life can be" Where are the wheelchairs, National MS Society?"}
I started this exacerbation so far down that I should probably be rejoicing at how much I have regained. To those looking at and commenting about me, it seems that rejoicing is in order. I hear their words and know I should be grateful that I have as much function back as I do…but all I seem to see is what is missing. My right leg and arm are no longer trustworthy, they are at least 30 to 40 percent weaker than before and my leg can no longer bear any weight. For so long, 12 years, my right side has stayed strong and been the lynch pin that kept me moving independently in my world. Now it is flawed, if not broken. The biggest change seems to be in my pelvis and torso in that I can't seem to sit up without folding up like Jabba the Hut or a too tall pile of wet laundry. I can no longer transfer or sit up by myself and my world is so much much smaller.
In that small world I am almost completely dependent and, to put it crudely, it sucks. Every dropped pencil, cube of ice, clean shirt, color of sock, bite of food, change in temperature, and countless other minutiae of living requires negotiating with another human being. Then, the indignity of personal care: someone washes my hair; too many people ask about and keep track of my bowel habits; nurses, PT and OTs, caregivers, friends, and family come and go. Yet, I stay here the unwilling star attraction of the Janine Show.
I put on my relentlessly chipper, jokey, smiling persona. I try to not be picky about what color my socks are or if my hair is greasy or how much butter I want on my toast. The desire to have control over the details of my days is snuffed out by the fear of being alone. Once something drops to the floor I cannot reach it. If there was a fire, I couldn't escape. If I reach just a little too far and fall out of bed, well that would be a disaster.
Nighttime is the hardest. My hubbie has to sleep, his working keeps us afloat. I don't sleep well from nerve pain. I swear time moves slower at 2am than at any other hour of the day. Often, I turn on my favorite worship music and have a long talk with God. In short, one thing that keeps me going right now is the movie that plays in my head of me whole and healthy, dancing at the gates of heaven. I've told Him I want cymbals, bells on my toes, veils-the works, "take these shackles off my feet, so I can dance." This is the movie I really can't wait to be an extra in some day.

With Regrets to my Corpus Callosum and Cerebral Spinal Fluid

2012-01-05T12:36:00.000-08:00

I let hope dig its hairy roots into my brain and by last night was entertaining dreams of having my career back, bicycling to work, finally walking the Portland Marathon-the goal I was working toward when I first had symptoms, and planting flowers throughout the endless horizon of possibility that is life as a 46 year old woman without MS. I am teeth grindingly blindly angry and sad-achingly bone throbbing sad to let those thoughts dance around.
Let me back up. My story. My MS story is one long slog through tests, doctors, and diagnoses while also shadowed by faceless bureaucrats who have the power to take away my income and insurance based on one doctor's note. About five years ago the Oregon MS guru and my local neuro had a side conversation and decided I have Conversion Disorder. As if this were some unmentionable, leper-like condition these-two 'men' didn't bother to discuss this with us directly. They left us to find out on our own. Cancelled critical meds, lots or research, a new neuro, neuro psych testing, and the support of family, friends and my counselor: conversion disorder was ruled out-MS of a secondary progressive nature settled in as my diagnosis.
What no one seems to understand is how heart wrenching, dream shredding, world upending it is to have Conversion Disorder bandied about. If you haven't figured it out, I'll ask you to read this in a loud voice, yelling angrily if possible:

Conversion Disorder is Curable!!!!!!!!!!

On Dec. 23rd I went to the hospital for five days and encountered my neuro from five years ago. In his little man supercilious fustiness he pronounced me conversion disordered once again and boom, I am down the hope rabbit hole. At least for a few days. Sure, he was an ass. Sure, he refused to treat me with dignity, let alone medical care. There is no love lost between us. But the worst, was opening this pandora's box I had had hermetically sealed. Damn him.
So, I saw my good solid trustworthy MS doc this morning and laid my cards on the table. Bad news. No Coversion Disorder. With two spinal fluid exams 10years apart that were exceptionally high and my new larger lesion: MS all the way and not one of the better kinds. And, some of my inconsistent physical exams come from what he called the way other doctors have treated me over the years. And he put that in my medical record. Thank you! So yeah, happy me.

Health Update: Home from the hospital last Thursday. Seeing continued improvement in right side, still struggling with spasticity and pain. Prayers are appreciated.

Just When I Think

2011-10-01T13:22:00.000-07:00

I am so so so tired—tired of being brave, tired of being resourceful, tired of fighting for each toe hold of territory that I stake claim to and inevitably lose. The very labels that people use to admirably describe me have become a millstone. I am worn wafer thin by this new terrible eye pain and the chutes n ladders changes in strength; by the unrelenting financial pressures; by battling with doctors; by having this oddball, hard to diagnose/explain/defend form of an already baffling disease.
It all is much too much.
I am not known to be an enthusiastic pet person. My husband attracts strays and would probably happily tote home the leftovers from the Ark, if only I would agree. Over the years we've always had pets, but they were clearly 'owned' by the men in the family and fond acquaintances of mine. Last year, a coworker of my hubbies, first introduced us to Sophie, a little rat terrier who had lived with a disabled lady all of her life. Sophie somehow worked her way past my natural pet reserve, and my deeper hesitancy over tiny dogs and now provides me with constant companionship, snuggled under my left arm, she is tuned to my moods and movements. Yesterday I learned that instead of the youthful five years old we thought she was, she is actually just about 13. And, her breed usually lives only into their teens. Unbelievable. Somehow I have to prepare to lose one more precious thing in my life. Now, our long-term family dog is elderly, and our new dog is too. I guess the three of us can sit around and wonder who is going to deteriorate fastest.
It all is much too much.
When I am asked why I haven't been writing in my blog for the past few months, my instant answer is the up tic in my illness. The truth is closer to say that I can't seem to find words or inspiration. I find myself running through ideas that are either too mundane (managed to brush my teeth today and only dropped the toothbrush two times…); too personal/medical/boring (yesterday was day seven with no relief for constipation, finally called the doctor,…) or too grim (read this post). It isn't that I feel that I need to protect others from the realities of my life—more that I am not certain I want to memorialize it.
It all is much too much.
How then, do I stay sane and keep going? My answers range from the simple sweetness of dark chocolate and the satisfaction of winning at Scrabble to the savory richness of a 25-year partnership with a great guy that was honored by the amazing gift of our son. And, if these things weren't enough to live for, I am anchored by a faith that is both simple, satisfying, and so profound that after 30 years I feel like I only have a child's view. Right now, my faith life is akin to a barnacle on the side of an oil tanker. I can't really do much more than hunker down and cling to that which is known and solid. I can't see the vessel, or know where I am headed. But, I do know how to be a barnacle.
And that is enough.

Measuring Indignity on an Entirely Different Scale

2011-08-12T19:30:00.000-07:00

Just a little earlier this evening I slid off the toilet and landed with a solid thwack on the floor with my bare bum all exposed and my undies around my ankles. Other than a twisted knee and what will probably be a rather sunset-hued bruise across my mid back, my sense of pride and dignity took the hardest hit. MS uses a rather crude peeler to pare back layer after layer of, "I would never," and "I'd rather be dead than be caught doing x,y, or z."
MS has a way of rubbing my nose in my physical failings like a parent who cruelly spanks their child for wetting the bed. It is as if a series of interlocking steps and processes that were carefully interwoven to create ME as I grew from infant to toddler: feeding & dressing myself, going potty, walking; grade school: exploring the world, meeting new people, riding a bike, playing outside; young adulthood: education, independence, travel, camping; adult: career, gardening, cooking, passion for living are collapsing back into themselves at an accelerated rate. Until I feel like my body is on a completely different journey than the one I expected to to take.
I've learned it is unwise to say I will never do or allow MS to do a certain step in my 'un'development. Although, I still cling to a few. I can't imagine having a total stranger come into the house as a bath aide. I don't think I could live if I were blind. Those are two that can crop up in nightmares. I used to be scared of being trapped somewhere out and about in my wheelchair, but in the twisted way MS works that has never happened because I am no longer able to go out and about alone because I become too fatigued and can get lost easily. Ironic, isn't it. What I feared wasn't anywhere as bad as what I ended up having to live with.
I am not particularly brave or noble or tough. I am, however, a survivor. Today required me to put aside my pride and ask my hubbie to drag my naked bum off the bathroom floor. And, knowing this damnable illness as I do, I am not too certain I want to know what it will ask of me tomorrow.

Under Water

2011-07-31T15:36:00.000-07:00

Four months? 16 weeks without posting, where did the time go? It is as if I went wading in a pond, my feet became stuck in the muck and I was slowly drawn under the water. Over time a thick opaque layer of ice built up covering the surface and I can't move or breathe. It isn't necessarily bad in a call the coast guard panic at the disco sort of way. More, just confining and suffocating and compressing and simply put, more than I can push past, through, or over.
Clinically, this is depression topped with a heaping ladle full of chronic pain and a garnish of cognitive loss, life hassles, and other bits and pieces of this and that. Frankly I am tired and warty and grumpy. I am equally tired of putting on a brave face and fighting.
And, in spite of this terrible inertia that grips me, I will. I wasn't sure I had anything left to say on my blog. Then, the other day a friend shared that she had shared my writing with a newly diagnosed friend. If I can let go of the idea that I have to be the poster child for the positive MS patient and share my life, warts and all. Maybe there are words left in me after all.
I can put on a happy face and act all sweetness and light. But, a little like a roman candle, I quickly fade and collapse. A short visit or a quick trip to the store or a walk around the block can lead to hours or days of increased symptoms. The pain I live with never goes away-it gnaws and eats at me all the time. Somehow, I have to find a way to live. That will be my focus.

A Touchstone of Blessing & Love

2011-04-23T12:41:00.000-07:00

One week ago today, 17 folks in my circle bravely gathered on one of the colder rainy April mornings of late and walked over three miles for no other reason than to make a public statement that they love and care for me. WOW On my darkest days I will remember their generous giving of time and body heat as well as the generous donations from family from across the country as well as the many emails and phone from well-wishers. With a nod to Sally Fields,

"you love me, you really love me!"

The occasion was the MS Walk 2011 and our part was TeamJanine. With 16 Members, several donors and many rooters behind the scenes.

Team members were: Sasha pushing Kaylee, next to Carol, my Mom Mary, Karin, Becky. Laura (w/ sign), Leone w/ her granddaughter Alyssa, In matching blue caps & the first to cross the finish line, Reen & Ted, next to them, my hubbie, John, next to him, our Dad, Dan. In the front, me in my wheelchair holding the team mascot Sophie next to my pops Rick and his dog Mojo. And, Janet who took the picture.

Here are some other images from the day:

Janet, Mary, Laura, Me and Sophie-All smiles before the walk and the rain

Sasha, Laura, & I share a smile with Kaylee

Kaylee, the youngest walker at 20 months, returns snug and warm! I believe our oldest walker is in their late 70s quite a range of ages!

My friend Carol might win the the award for wettest hat

Clam chowder to warm up the tired walkers: Sasha, Kaylee, Carol, & John

Leone & Alyssa return

Thank you Laura for walking, on top of working a full day, and caring for a sick kiddo! Thirty plus years of friendship-You're the best!

Rick you deserve the team spirit and purple awards. And, I am buying you a raincoat for Christmas!

And to my Aunts and Cousin who so generously made donations to the MS Society. TeamJanine raised $490.

What a marvelous way to be reminded that so many people are willing to invest their time, energy, mind, and spirit in fighting MS and letting me know so clearly that I am valued and loved.

Thank You, Thank You, Thank You,

Janine

An Entire Post About Toilet Paper

2011-04-13T12:53:00.000-07:00

Simple Becomes Complex

So, yesterday morning, the annoying electronic despot that rules my days rang at 10am on the precise dot as it does every single day with the message, PX. P is for pee and X is for time. Without this chirping time cop I have little or no sense that my bladder needs emptying and am prone to leaks where my belly is slowly wet or flooding where I resemble Noah, with no ark. Every two hours it reminds me to drag my dead butt in to the bathroom or prepare to pay for the consequences.
Back to 10am yesterday morning and my chirping PX and my Pavlovian response.I've learned the hard way not to hit 'dismiss' and not actually go. When I get to the bathroom I discover there isn't any toilet paper, no problem, there is always some in the cupboard-nope; check the closet-no; I can't find the flushable wipes. I've rolled in circles to every spot that the TP could be but there isn't anything. I know of two or three places that I could check if I could walk. Now, my bladder is suddenly urgently in need, I have no TP, and in some sloppy mix of hating my legs, the incessant beeping of PX, and facing my third week of chronic nerve pain in my eye and head I break down in tears. Not just a few little frustration drips, but big sloppy ugly crying that doesn't have a whole lot to do with toilet paper. Luckily I found a partial roll on my commode and sat in the bathroom and cried.
A few days earlier I posited to my husband that he had better die before me otherwise I would be sharing at his service how much I appreciated his quiet habit of always filling the toilet paper holder and storage rack. That I found his simple gesture to be a statement of the wonderful care he takes of me. This made yesterday's emptiness and resulting little squall all the more ironic.
This morning, not only was the roll full, the storage container and the back of the toilet had a small mountain of paper. And, my package of wipes were tucked at the base of the toilet. Yesterday they were hidden in plain site on the edge of the bathtub. He'd taken the time sometime between bedtime and breakfast to build a buttress of TP, his attempt to hold me together while he works across town.
I don't know if this is a story about toilet paper, or bladder function, or kind husbands. Maybe it says more about the every day hassles of my world, maybe it illustrates how fragile my emotional shell is. I do know there is meaning here: in TP, and electronic potentates, and crocodile tears. Thinking about it all now I can smile or I could cry: only time will tell tell.

Big Plans Afoot

2011-03-28T10:23:00.000-07:00

I recently watched a show on the Food Network Channel starring Ann Burrel and have decided that if my life hadn't included MS I would have had her 'food life;' hard working, practical kitchen, earthy ingredients, food that looks so good you can smell it through the screen. I imagine a house full of friends, fresh sea food on the grill, a luscious pear torte cooling in the pantry: the pleasant thrumming of a life busily fully lived. Not perfect by any means, but as complex and alluring as Paella with Dungeness and as soul satisfying as Rogue River blue cheese.
My fella and I started together 25 years ago this month. Life was simpler then. A box of Mac n Cheese cost .39¢ and when we were flush we would throw in hamburger, onion, and, sour cream. It seemed like our lives flitted from the next term paper, pay check, or invitation to dinner with little thought beyond the immediacy of that day or moment. Life was full of bits and pieces that blended together into the rich broth that has seasoned the rest of our life together.
Our son graduates from Tulane University in May of '12. Hard to believe that this milestone has come on soft feet into the forefront of our lives. I find myself dreaming of visiting New Orleans and enjoying his life there for a few days next spring. To sit at the neighborhood cafe he described eating sweet potato fries with pecan topping. To see him graduate from college didn't seem possible a few years ago, but now, I can almost reach out and taste it.
The past few days I've wrestled with an altogether different beast. One of the cards I've drawn in the MS deck is Occipital Neuralgia. If you asked me how I was feeling today, I would use the lay person's term of headache, when what I mean is: on the right side of my head, from the taut tendons in my neck, slowly fanning up and over the scalp before narrowing down to my eye, lives a creature that seems to writhe and slither just beneath my skin. Randomly it bites down on my eye with an ice pick of pain. The sensation is close to the drop at the bottom of the ferris wheel, pit of the stomach, nausea while also being cloying, burning, and electrical. At times, it burns so deeply I think smoke should seep from my hair follicles. Light and sound intensify every sensation. For the first time, motion makes it worse as well.
My big plans? My 'to do' list for the decade, year, hour, or minute? Sitting as quietly and motionlessly as possible. I am downright witchy. Talking on the phone hurts, maybe if I stare at it it won't wring. Maybe if I don't breathe, my headache will go away. Maybe.

It's Just Been Too Damn Hard

2011-03-20T16:05:00.000-07:00

How have two months passed since my last post? Time slithers through my fingers like the memory of dense fog hanging onto the edge of darkened streets. At times, I've felt like I pulled a fold of the earth over my head and made a concealing pocket of cool dirt to hide in. I've watched with disinterest as the worms have burrowed by and the roots have dug deep. I haven't had words or the ambition to write them down.
My state of being isn't any one event, one root cause, one dramatic whoopsy-daisy that can be circled in red crayon on a calendar. More like the finger of a curious child-giant reached down and flicked off the party lights, blew out the candles, and left me in the twilight.
I can survive. MS, the old witch, isn't winning this round. I think of her sitting on her bony arse in her mushroom brown lair plotting new recipes for neurological destruction. In her best wicked voice, she challenges me: think you know what pain is my pretty, think you know?
What she doesn't seem to ever learn is what a tough old girl I am. A snippet of scripture often floats through my head on my darkest days, "I know the plans I have for you..to prosper, not to harm." This is what I cling to-not the spiteful strafings and clawed swipes of MS.

What the Dead Tell Us
about Heaven and Hell

for Sara

Brett Ortler

They explain it in stories.

In one, there is woman in a garden

of a ruined plantation where the bricks

of the main house burned

long ago, but the terraces are still tended,

and gardenias grow in groups

of three or four. And a man is with her, and he loves her.

But it begins to rain, the water is cold on their skin,

and in that moment he knows he will go north and lose her.

For the first time in his life, he believes in heaven and hell,

not as far-flung countries, but as twin cities,

with skylines in plain sight of one another,

both borders lined with billboards and bright lights,

and he realizes how hard it is to hear the difference

between a city full of worship and one full of wailing

and how easy it is travel

from one to the other.

Getting Back to Dancing...

2011-01-27T10:34:00.000-08:00

I've been wading my way through what seemed an unsolvable quandary: dare I do or dream a thing when the specter of MS is always waiting in the wings to swoop in and steal the show.
This past weekend my brother came to town to spend a few days with me and others in the family tribe. He lives in Vermont and so his visits are all the more precious, because they are rare. His unending empathy and his ability to 'get' this illness, have helped to move our relationship from siblings to friends. {don't worry, bro. I haven't forgotten about the tacky 'more than a brother, a friend t-shirt that I owe you!}
It was one of those halcyon weekends with beautiful crisp clear weather that seemed to reflect brightly the connections and moments that came together to make it extra special: sharing memories of childhood family backpacking triumphs; tromping around with my 4-yr old great nephew; sharing early-morning coffee with my brother; eating way way too much at the Pilot Butte drive in. Flashes of moments that I will treasure in my memory for the rest of my life.
As we were all busily cleaning the vacation home we shared my brother asked me to take a moment and listen to a song he found particularly moving. The artist is Iris Dement, a web-described cowboy folk-singer whose lyrics are amazing. It was another song, "Shores of Jordan" on the disc that provided my transforming moment.
Music is a powerful tool for helping me to express and clarify my thoughts. From favorite songs and singers to tunes I've never heard before: transformation can come from unexpected places. Iris provided the words that gave me the answer I've been searching for:

Well, I looked up into heaven, I thought I'd solve life's mysteries.

I observed the constellations for a clue to my destiny.

But the rhyme of life confounds me, things will be as things will be.

So I'll just dance the shores of Jordan 'til the angels carry me.

I'm gonna let my feet go dancing to my very favourite songs,

'Cause I know my time for leaving is bound to come before too long.

And there ain't no way of me knowing how tomorrow's gonna be,

So I just dance the shores of Jordan 'til the angels carry me.

So, in a few sentences, tied to the last hours of a special weekend, I knew that I want to live. To relish and enjoy everything that I can. I'd be lying, if I didn't admit that this past weekend's adventures aren't costing me this week. My usually strong right side is dragging, my pain level and exhaustion are off the richter scale. It may take days for me to recover
But, in spite of the price I am paying for letting every line of my dance card be filled in—I choose to dance.

The Envelope Please...

2011-01-16T12:17:00.000-08:00

And the answer is:
Split neatly into two camps—those with MS and those who haven't had the pleasure. (to read more about the question go to my Previous Blog)
Those with MS expressed that there is no easy answer to the question of whether or not to risk doing a thing and face the crushing disappointment when our bodies fail us.
The 'peds' universally said go for it. It almost seemed like a wall of cheerleading shouts, trying to drown out the downer that life with MS can be.
Personally, I don't know. Reach for dreams or stay safely within the limits? So far, no answer makes sense or fills in the blanks on the 'paint by number' I am working on.
I am not sure that my non-MS people can really understand the quandary, no quagmire, that living with MS creates. Maybe my experience yesterday can illustrate. I woke up after a fairly good sleep feeling about as good as I do. This happily coincided with a monthly gathering of women for a crafting circle. I went for a few hours and enjoyed myself. I knew it was time to go when the fatigue hit in waves and I started to have micro twinges in my muscles. Home I went and within the next few hours MS started to charge me the price of playing. Stabbing electrical strikes in my left thigh, all over twitches, spasms and charlie horses (lumps of hard muscle that slink away with massage only to pop up again in another part of the limb) The most frightening are the electric jabs and weakness in my right leg, which is usually unaffected. 24 hours later I am in too much pain, too fatigued to get out of bed. Church wasn't possible.
Was it worth it? Not right now, it wasn't. I hope that my nonMS readers will better understand the dilemma. The real world toll that doing something as simple as sitting and doing a simple craft for a few hours can make me pay.
I wish I could know ahead of time what the MS cost will be for a given activity. Then I could decide if it was worth it.
Footnote:
A couple folks expressed surprise that I was 'doing better' than I had expected. I read back over my last blog to see what they meant. I believe this sentence "My recovery from the July relapse and hospital stay is better than I ever expected." has created the confusion. I am not miraculously cured or ready to run a half marathon. The July relapse led to 10 days in the hospital, loss of function on my left side, and the inability to transfer or dress myself. I came home to a hospital bed. So I am doing better that I was in early August, but compared to what? I can be left alone during the day. I have learned to roll over and have increased use of my left side. My left hip seems permanently profoundly weakened, and scooting to the left is difficult at best. Better? The hospital bed is gone, function has increased, while decreased cognition, weakness, and other symptoms remain.
Footnote 2:
Please, please, please would folks stop telling me that I am just forgetful, or getting older, or compare me to folks who are forgetful and older than 65. I don't mean to offend anyone, but the cognitive problems I have aren't related to aging. Thank you.

Perchance to dream?

2011-01-12T16:01:00.000-08:00

On the surface floats a rather obvious answer. My culture is rich in a sort of Horatio Algieresque bravado: a climb every mountain, sail every sea, be all one can be despite rain, slow, sleet or what have you. So, as long as one can do a thing, or dream a thing—one damn well better.
Imagine working for years to build a house. Each room carefully designed for form and function; from the lovely solarium looking out over the rose trellis to the cozy den with its well-appointed wing chairs and grand fireplace. One day, a letter arrives in the mail that the bank is oh so very sorry, but there was a terrible oversight and they will be foreclosing on this beloved house. The letter doesn't specify a date or a time; but it will happen. After wrangling and fighting; the house's loss is a foregone conclusion. The owner can batten down the hatches and refuse to recognize what is coming or the owner can pack a few things and depart or the owner can quietly close down the place; shroud the furniture, close off room by room; and hunker in to live out the days left to the house.
With the steady onslaught of loss caused by progressive MS, the third option was always my choice. A continuous process of closing doors and putting away those things I can no longer do. Sold the bike at a garage sale years ago; stopped driving with the arrival of aural neuropathy and weakness; left the dream job and never went back; stepped back from volunteering at my church; from the practical day to day functions to the bigger things like my dreams of an old age with my hubbie; I've chosen to close the door, mourn the loss, and move on. It is harder to cling to the cobwebs of what if and maybe and constantly be disappointed than it is to let go of losses and pack away dreams.
Over the past few weeks I've wrestled with a fourth option. Some events that seemed too far away are now close, such as my son's 2012 college graduation. My recovery from the July relapse and hospital stay is better than I ever expected. And then, there is Desmond TuTu.
A delightful young woman I know spent last semester sailing around the world. He was part of the faculty leading and teaching during the trip. On a shore excursion that had an audience element (I am fuzzy on the details) she was sitting in the crowd when a hand tapped her shoulder. It was Desmond TuTu offering her popcorn from his tub. She took a few polite kernels. This exchange repeated itself several times. Finally, he leaned over, held out the tub, and said, "Be Greedy." Take a big handful, dive in and don't miss the buttery ones. Don't be polite, or shy, or resigned to a little bit. Be greedy.
I heard this and had one of those clear, bell tolling moments. Here I am settled into these clearly defined square feet of my life. Resigned to the room or two I live in while I purposely allow the rest of the house to slowly molder away. Can I, should I even consider opening any door, pull open the curtains on any of the things I have worked so hard to let go of?
For a walking talking non MS person the answer is simple: yes, be greedy. Life without adventure and dreams isn't worth having. But be careful, don't forget for one minute that MS is beating at the door and any minute I could have a huge relapse and no matter what I wish for I won't be walking or working or dancing again any time soon.
So, do I plan to go to New Orleans next May? Do I delve into the garden catalogues that come in the mail. Is living with the maybe of it make any sense. Or would it be better to firmly and quietly make decisions now.
Be greedy...Is that possible or even wise in the world of MS?

'M'ore of the 'S'ame

2010-12-28T21:12:00.000-08:00

Met with the urologist today. Resigned to the reality of planning for the replumb of my piping. Weighted down by worry, we waited and waited.
The nurse was chipper and too much like a cheer leader who didn't know the basics of the game.
I was a good patient, armed with questions and 'I Think I can' plans. Usually this doc is empathetic and helpful. Today he seemed hurried and distracted. I could see that while his body was in the room, his mind was caught in some thing, somewhere else.
Long and the short of it: no surgery, for now. And, no sub-cu catheter either. I should be waving pom poms of my own to be rid of the damnable thing. However, I now must figure out how to live with this bladder. The doc is referring us to a rehab doc to help us decide if my hands are able to manage the mechanics of either of the new catheter options.
But, the reality is that after a few minutes with the doc he was summoned to a scheduled phone call and we were left alone. The chippy nurse walked us out with lots of head nods, 'I don't knows,' and let me check on that.
But no answers. I am at home with a non functioning bladder soldiering on. Sludge, slog, slog, slog.
I have already had my first flood, and am facing the indignity of Depends.
While the doc moves on the his next patient, I am left to manage with few answers. What is new about this state of affairs. It feels achingly familiar to the rest of my life.

The Sound of One Hand Typing

2010-12-15T14:44:00.000-08:00

I made it to a lunch function at church yesterday. An older gentleman stumbled and fell against my weaker left side. To right himself, he clutched my shoulder-digging his boney fingers into the joint. By the end of the meal I was in more pain than I have felt in some time. Now my arm and shoulder are on fire. From deep in my arm pit, cresting over the ridge of the joint and coursing under, along and through the fibers of my arm. My fingers are weak and cold. It hurts so much I can't seem to keep tears from fogging up my glasses.

I am so very, very tired. Tired from not sleeping. Tired of a simple accident sending me to such a dark place. I even called my doctor for help, even though my gut knows that nerve pain like this is 'treatment resistant.'

I will paste on with the strongest glue my I can handle it persona. What choice do I have. How does one put on their big girl panties, one handed? The same way I am typing this with just my right hand's middle three fingers

I wrote this earlier today on Facebook, responding to a friend who has her own army of ogres to face:
... For me, it is make your own survival. I choose breathe in with the next exhale; I choose the salty tinny taste of Progresso beef barley soup as worth turning the page; I choose to acknowledge that I am part of God's kingdom. I choose each tiny molecule of detail that propels me forward. It never is a thunder bolt on a clear blue sky kind of moment that makes me keep going. It is little moment by moment choices that at the good, no better times, roll by unnoticed. But, on the grimmest days, are enough...

Friends, thank you for reading and walking alongside on my journey. Keep my hubbie in your thoughts, when things with me are this bad, he bears the full weight of keeping the home fires burning. And this time of year includes trees, and presents, and all things Christmas. I don't feel able to chat on the phone or have folks over whith this acute episode. That leaves him in the thankless task of gatekeeper. If he doesn't hand the phone over, it is at my request. Email is the best way to reach me until this wildfire burns over.

Opening and Closing with Another's Wisdom

2010-12-01T13:58:00.000-08:00

One afternoon, just about every week, my Dad comes over to spend a few hours playing cards or games. We have a friendly rivalry that includes a fair amount of trash talk and touch-down jubilation. Last week we were playing a favorite card game where the goal is to get the lowest score possible. At the end of the first game, his score and mine were so tilted in his favor that we might have been playing different games. Call me a glutton for punishment, but I settled in for a second game to try and regain some playing card street cred. He keeps the score and at about the half-way point, I asked him the score. He said, "well, you might suck just a little bit less than the last game."
I recognized instantly the insightful wisdom of these words and promptly added my own twist. People often interpret my big smile or animated speech to mean that my health has improved. I've never had a good answer, until my Dad gave me the words, "My life sucks a little bit 'more or less' (depending on the reality) than yesterday or last Sunday or since I saw you last." This addresses that with my progressive form of MS with the associated pain and steady losses some aspect of my life always sucks to a lesser or greater degree. So, with these magic words I can finally express and accept a certain starting point that is how I gauge where I am at.
One of the hardest things I am dealing with right now is how emotionally fragile I am. We've had one challenging thing or another going on in our lives since July. My tears or anger or irritability are boiling just below the surface. The littlest thing can tip me into despair or rage. Some of my emotional flatness right now protects me from these emotions.
My brother is a wonderful guy and busy caring for his land, wife, and children. In spite of that he makes a tremendous effort to be present in my life from a few thousand miles away. This morning he shared a poem with me that expresses how I feel better than my own two hands and sluggish brain ever could.

THE GUEST HOUSE

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they are a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice.

meet them at the door laughing and invite them in.

Be grateful for whatever comes.

because each has been sent

as a guide from beyond.

-- Jelaluddin Rumi,

translation by Coleman Barks

Se(n)t out to Sea in a Pea Green Boat

2010-10-19T15:29:00.000-07:00

One of the best moments of my recent life was swimming with my son in the ocean waters off Maui. The joy of returning to the ocean and playing in the waves is a salty sweet memory that still flavors my sadder days.

This memory is layered upon a lifetime of others: hours spent in the exhilarating mountain cold of Fish Lake in SE Oregon where my grandparents had a cabin; dive bombing with my cousins into my other grandparents kidney shaped pool; polar bear swimming at Cleowax lake at girl scout camp; the visceral pleasure of trading the weight of a backpack for the cleansing and refreshment of an Oregon Cascade lake. I was always the first one in and the last one out of any body of water that came my way. Scuba diving, snorkeling, floating, lolling. Being in and around water defines me. Then, the grown up pleasures of Belknap hot springs; star gazing from my folks hot tub and countless hours soaking in bathtubs.

With careless casualness, my Urologist informed me earlier today that this is over. No baths, no hottubs, no Maui wave surfing. Apparently he forgot to tell me that with a superpubic catheter water immersion isn't allowed. Is that a problem for you, he asks. As if gimps don't float.

I haven't stopped crying since then. He broke my heart. How could this be true? How can I survive having something so integral to my entire life coming to an end.

Shouldn't doctors be required to warn you if choice A causes thing B to end.

I can't write any more about this. Maybe once I have processed a little more this won't seem so bleak. But I doubt it. Maybe there is an upside that eludes me right now. But I doubt it.

Down around Biloxi

Pretty girls are swimmin' in the sea
They all look like sisters in the ocean

Safe or Sorry: this is my Question

2010-10-14T20:41:00.000-07:00

What is the difference between parasailing and paragliding? In the first, semi-adventurous tourists put on a parachute and are towed behind a speed boat; while paragliding requires a level of moxie that few people have. Enthusiasts hike to the top of cliffs and throw themselves off, depending on a flimsy nylon parachute to slow their accelerated rate of descent. What kind of fool would choose this for recreation? Me, I hope—if I had known then what I live now.

If at, say, 25, I followed Alice down the rabbit hole and was given a glimpse of my life at 45 would I have suddenly gained the internal fortitude to do all types of seemingly crazy things. It is one of those 'road less traveled,' right turn/left turn questions that philosophers have chewed over for ever. I am more interested in imaging the kinds of things that I passed over-thinking I could always get to it later.
These thoughts were triggered by a video I saw of a couple hiking through a South American jungle with the sole purpose to jump off a cliff. The wife is having so much fun, she does a back flip off the edge. The husband gets caught in a wind current and slams into a tree. Even after a severely broken leg from this accident, a year later he is eagerly planning his next jump. Crazy? Absolutely, but, at the same time, so darned alive. If I had my health back I think I would start with bungee jumping, move to paragliding, and 'take the leap' to base jumping (same jump, no chute). Not because I had my full functioning body back, but because being safe and sensible doesn't guarantee that you will be safe or that life will be sensible.
Would I rather: be a quad from hitting my head on the ocean floor or sit safely in the boat; eat the volcanic Thai food or stick with the one star; take the payment optional roving reporter job or settle in to editors desk. I often say that except for MS, John and I would be backpacking now. In reality, we had plenty of health years where we were too busy, too parents, too career to take a weekend day-hike trip, let alone a summer to reclaim the Pacific Crest Trail.
This isn't about regret—rather a touchstone to return to the next time I make a seemingly small choice or awesomely large decision. My paragliding, hiking, and volcanic food (and roller derby-too bad) days are behind me, but who knows what is ahead. Maybe the next time I find myself in an island locale, I will sign up for the parasailing.

Circus Acts aren't for the Faint of Heart

2010-10-10T19:53:00.000-07:00

These past few days were rough and I don't see any let up. My new catheter is acting up-not draining as well as adding to rather severe pain in my abdomen and left back. I spent most of Friday at the urologist's office trying to find the cause. At the end of the day I was left with a generic diagnosis of MS bladder spasms pinching my catheter that causes urine to push into the tube between my bladder and kidney making it be irritated. No solutions. No treatments. Simply one more thing I have to live with.
And, I am not certain that I can take one more thing. The past three months have been layer upon layer of one more thing. Somehow, I have to live with this.
I am trying to hold on to what I can. My hubbie stays committed to this battle (I both salute his commitment and wonder about his sanity).
This afternoon two friends stopped by with their adorable daughters and reminded me that living is a blessing. I think of my own son at 15 months and later at 6 years. It seems like yesterday. Raising him and these memories are another thing I treasure.
It seems that I am starring in a high-wire act crossing the Grand Canyon. On one side is the pull of pain and loss and sadness. On the other the bouyant support of friends, family, and the life I treasure. Somehow, I must make my way across this seemingly impossible high-wire feat.
So, thank you to the friends who stopped by today. You may not realize it but a few hours of your time gives me strength to carry on. Thank you. Thank you. Thank you.

A Week of Extremes

2010-10-04T08:51:00.000-07:00

In the same week, my much-loved pastor asked my permission to talk about the joy in my life in his next sermon and my long-term wise counselor asked me about the current state of my chronic depression. How then, do both joy and depression share space in body and soul?
I wish I could say that I have made friends with the depression. Rather it trails opaquely behind me like the slime from a slug. As a little girl running along the woodland trails and spongy beach-way paths of Oregon, slug slime gave a few second warning of banana-sized slugs ahead. And, if this shiny warning wasn't heeded, in a belly roiling moment slug guts would squoosh between bare toes. I can tune out and ignore the depression. Paste on my shiny happy people smile and joke and talk; but it is always there. I do try to take the best care I can. Medication and counseling help, but recent research indicates that MS-caused depression may be resistant to traditional treatment. That is MS code for nothing can be done; learn to live with this symptom.
For the past few years my world has gone from macro to micro. The resulting aloneness is probably one of the most treatment resistant aspects of living with depression. As my work-life and volunteer-life, first faded away, now I see my most intimate friends moving forward with their lives while I stay stubbornly stuck in neutral. Learning to live at peace with aloneness is currently my biggest challenge. {Want to know more about MS & Depression?}
What then is this joy in the midst of the depression and challenge of advanced MS. Many good and even great things exist in my life. But not one thing adds an iota of true joy. I am talking of spiritual joy that comes from my relationship with Jesus. From the steady heartbeat of eternity that pulls me forward. It is a commonly held, and I believe false, belief that being a Christian should reward me with the payout of a Barbie and Ken life. Where is my Malibu Barbie beach house with Ken at the wheel of my pink convertible. Shouldn't my allegiance to God produce tangible benefit? Instead, my faith serves as salt to melt through the slug slime. My faith is the touchstone that guides me through the darkest days. Without it, I am not sure I would have survived this far.

As pressure and stress bear down on me,

I find joy in Your commands. Psalm 119:43

Thanks for the Laugh, King James

2010-09-17T08:46:00.000-07:00

At the end of a long slog through day surgery for a superpubic catheter on Thursday, my bro-in-law found some humor that made all of us howl with laughter. His phone has an app that randomly generates a scripture of the day and on this day it was:

He that believeth on me, as the scripture hath said, out of his belly shall flow rivers of living water John 7:38

Who knew? My new appendage has a scriptural application. So far, this is the only thing I have found humor in during this whole process. The surgery itself was blessedly a few blank hours. I remember wondering 'what is the white goop in the syringe that the anesthesiologist was adding to my IV line' and then waking up in the recovery room. My doc told me that full or partial anesthesia was my choice. I knew that I didn't want to be awake for any part of this. On days when the nerve pain is bad, I wish that I could have a dose of that milky goop and wake up blissfully unaware hours later.
I was surprised by how much pain I was in by Thursday evening. It felt like a red-hot poker was jabbing into my belly every time I moved. The home health nurse assured me this was normal (why don't they explain this ahead of time?) I for one, prefer to know the cold hard reality rather than be surprised. I am getting better hour by hour. As long as I don't bend at the waist or stretch past a certain point or pick up my 8lb dog; the pain is more a dull ache.
As a chronic pain veteran, there is pain I can tolerate and then there is pain that must be responded to. The electric icicles that randomly stab my left leg, arm, face and head, and lately my right thigh as well, can't be ignored. These jabs suck all the light from the room and reduce my focus to a square inch of my anatomy. I gasp, I cry, I fold up like a fortune cookie. I don't think I could live if this type of pain came much more frequently.
So, the next chapter opens with the subheading, 'life with a belly cath.' I haven't lived with it long enough to have an opinion. Right now it doesn't seem real that part of my anatomy is running on a new track. I hope that once I work through the initial struggles of adjusting to this new normal; it will be just that: Normal

Everyone is Invited

2010-09-08T13:11:00.000-07:00

No Gifts Please—after all—Where to Register?
Should I throw a bon voyage party for my bladder? After all we haven't had the best relationship over the past few years and lately are barely communicating at all. Next Wednesday, with a one-day surgical procedure, my bladder will be closed down and replaced with a suprapubic catheter. Basically, a tube that runs from my bladder out to my abdomen.
Maybe a funeral would be more appropriate. If I let the emotions surface I feel tears start to well. This is the first of my internal organs to require surgical intervention and to ultimately stop being functional. Simply too much loss to inspect too closely. People blithely tell me how much easier my life will be once this is done. Suggesting that it must be nice not to have to make trips to the bathroom. I'd much rather have my bladder back, thank you very much.
I also don't find anything humorous about this. Especially when folks make jokes about the new tubing being similar to how men pee. I am a girl losing her bladder function. And, to put it simply, it sucks.
After the past few weeks with a hospital stay, my permanent loss of more function, piles of medical bills, and now this surgery, our household is about at its functional threshold. A big thank you to my brother-in-law for his willingness to fly down from Alaska later this week and help us through the surgery days. I have this cartoon image in my head of the top of my husband's head popping off and steam pouring out of his ears. One of these days, it is going to happen
I think I will pass on a gala or a funeral. This is one of those invisible losses better suited to contemplation. As with everything else, I will try to move forward and not root around in memories and could have/should haves.

Where Did August Go?

2010-09-01T09:22:00.000-07:00

These past 30 days bring to mind the first eight weeks after bringing home baby: everyone is fussing over the cute new addition; while the parents paste on a fake grin and secretly dream of returning this 24/7 insatiable demanding bundle to its original owner. The obvious difference is that eventually the baby learns to laugh and smile, the whole Gerber baby thing, while my struggle to simply survive will not come to fruition in such a tangible way.
I fired my first home health physical therapist for his out of touch and falsely hopeful treatment goal that I learn to stand on one leg at the kitchen sink. The reality is I have fought for the past two years to give up standing. When you can sorta, kinda, teeter on the leg that has about 80% function to reach the Worcester sauce bottle, (while leaning over the pan of beef stroganoff bubbling on the stove) it is painfully difficult not to. I used to be an accomplished cook: now a few times a month I marshal the strength to dump a couple of cans of stuff into the crockpot with a package of seasoning mix created by a food scientist. Giving up my unsafe version of standing was the final door to shut in packing up and moving away from so many dreams, from the practical to the profound. So, who was this seemingly well-intentioned fool to suggest I replant blackberries in my backyard?
It is almost impossible for me to find one good thing in my current state of affairs, but, since I know I am supposed to: my hubbies steadfast support; my son flying home to check on me; the friends and family who've pitched in; the comfort of prayer and praise music; a home with water, lights, and electricity etc., etc.. Not one thing about my health makes the list. It is hard to embrace any of the gains I've made since this last exacerbation pushed me so much farther down the MS continuum and I haven't been able to return, in any area, to the state I was in before. To illustrate, my left leg weakness has gone from a percentage function level of 40-50, down to 0 and now a persistent 0-30. This drop in range of function holds true for every area affected by MS. Other than my nose, this seems to be every inch of me.
With little fanfare, my bladder lost its function. I am tethered to a Foley catheter and facing surgery to make it permanent. People blithely tell me how much better it will be once I have a suprapubic catheter in place. When the medical term for something I am going to live with for the rest of my life sounds like a word that isn't said in polite company, it isn't likely to be good. In fact, I find myself profoundly mourning the loss of my bladder and all it entails. Who ever thinks they will miss the mindless ritual of using a toilet?
My memory has also taken a scary turn. Not just middle-age forgetfulness: I am talking about blank spots in the middle of a conversation where I can't remember what we are discussing; I am talking about writing down every little thing I need to do each day in order to do it; I am talking about working with a memory specialist. I avoid the phone, laugh off the gaffs when I can't fill in the blanks; and paste on a smile.
I am often asked how my claim of Christian faith fits in with my grim slog through life with MS. After all, aren't Christian women supposed to be virtuous and somewhat mindless Barbie Dolls? I rather prefer the recent revelation that for much of her life, Mother Theresa felt distant from God. Yet, she more than embraced a Christian life. My Christianity isn't an external facade; it is a commitment to a truth that flows through my life. Being a Christian doesn't make me happy or healthy or a lottery winner. It simply means that every day I survive steadily going toward something greater.
Surviving is the watch word of this day, this past month, and into the foreseeable future. So, thank you to all who help. Their acts serve as the cups of water that marathoners snatch from the hands of volunteers.
Closing with a nod to Gloria Gaynor, Disco, and my Aunt who introduced me to this song many years ago:

Oh no, not I
I will survive

as long as i know how to love

I know I will stay alive

I've got all my life to live

I've got all my love to give

and I'll survive

I will survive

Update: Post Hospital—7 Days+ 1

2010-08-01T12:57:00.000-07:00

So much love and support has come my way over these past days: my husband's coworkers and the church family brought us meals; a group of friends spent a work-day evening reorganizing our house to make room for a hospital bed; and other hands-on help; as well as visits, cards, and most importantly prayers. It is much much easier to shift my view of 'normal' to my body as it is now with this foundation of support from everyone in our circle. It is reassuring to know that I have these people to back me up, no matter where MS leads me.
One thing that I am often asked is, 'What has physically changed?.' A common misconception with MS is that exacerbations lead to paralysis (the complete loss of feeling and function). For me, this has never been true. With secondary progressive MS, physical loss is more a steady onslaught of stealthy creeping weakness and reduced function that also varies in impact. For example, I can pick up my coffee cup 3, 5, or X number of times and on the next, my hand lets go and liquid every where. From day to day, moment to moment I never know what is going to function and to what degree. {Remitting/relapsing MS is characterized by dramatic sudden attacks}. One reason this recent episode is so scary, is that it is the first time I have had a true sudden attack of MS, in years.
So, what exactly has happened? I woke up in the middle of the night and discovered that from my shoulder to mid thigh I couldn't move, turn over, sit up—whammo, just like that. Most of the time, I stubbornly refuse to seek medical attention. Why bother when my disease course is untreatable. Doctors are trained to do something, even when faced with diseases like mine. But, that particular Monday morning, I wanted to call my doctor. To my surprise he sent me to the ER and then tucked me in to five days in the hospital.
Coming home on Saturday was discouraging. To me, the results of this exacerbation seemed unchanged. My wise husband, with his caregiver eye, was able to point out that my left arm is moving better and so is my thigh. Subtle changes that mean the fight against these latest losses isn't over.
Right now, my goal is to be able to transfer from one place to another all by myself and to ditch the hospital bed. Once I am independently mobile, I will be able to be on my own again. Physical therapy starts next week and I am ready to fight to regain some ground.
For now, my left hip remains, like wet cement, stubbornly aggravatingly near impossible to move. The left side of my torso and shoulder are slightly more mobile. I still can't sit up without slumping and occasionally toppling over. We've had some good laughs at my gumbiness. My reasoning and short-term memory don't seem to be improving. My bladder function will be determined at the Urologists on Thursday. I can and do leave my hospital bed with help from the hubster in the evenings and at night. Daytime can be bleak with facing eight hours pinned to my bed.
Visitors welcome! But, please call first, I sleep alot and tire easily. Thank you everyone for all of the love and practical support.

And now what?

2010-07-25T15:45:00.000-07:00

This is a short update, because my hands and brain seem to be on separate planets, may pain level is through the roof, and frankly, these past five days have knocked me for a loop.

Every time I think I have MS's course through my life figured out, it tosses me on my rear end. I woke up last Monday at 1am with a medium size stone gargoyle sitting on my left hip. I was pinned like an inspectable bug and further testing demonstrated that from mid-thigh to shoulder my body seemed to be immobilized. In my sleepy state it didn't make sense why I couldn't roll over or sit up. Eventually, I began to let the reality of a new round of MS Life begin.

Monday became even more exciting with a call to my Neuro, a long stint in the ER, followed by a five-day stay in the hospital.

After a course of steroids, endless poking and prodding, and the general annoyances of hospital life; I am right back where I started. Pinned. To. The. Bed.

They sent me home with the gift of a foley catheter, so I am having to learn to drag a bag of pee with me wherever I go (pun, pun, pun). My neuro says he will see me in a month, nothing more they can do.

For real? This is life now? Did I actually think I knew the worst MS could dish out?

I will write more later as my brain begins to assemble the pieces of what this means. Too many worries and 'to dos' Back to bad television and monitoring my catheter.

The Bad, the Normal, & the Hilarious

2010-07-09T08:50:00.000-07:00

So, somewhere around 3pm yesterday, as I was wading my way through a persistently and pervasively rotten day that started with an alarmingly sick dog; a mad dash to the vet; drifted into bills I couldn't think how to pay; stayed mired in heat, a cluttered house, the annoying ache of cramps; and a phone that just didn't stop ringing—it hit me that not a single one of these things was connected to MS. And with that one thought my 'bad' day went from trying and failing to resist the siren song of emotional eating to the soul satisfying balm of how good it felt to have a normal bad day.
My previous post is as real as it gets in talking openly about my 'MS world.' Writing it was like inviting my reading audience over for a tour of my garden and taking a side trip into my messy basement. I keep my MesS hidden most of the time. It is my experience that folks just don't know how to respond when I am that transparent.
One of the wise people in my life, after many years of counsel and support, 'fessed up' that he struggled with how to talk with me since our 'normal' seemed so out of sync. A day later, another wise person shared that a few years ago he made a conscious decision to stay connected to people who were facing things like cancer. Rather than fading from the person's life and assuming that that person's new 'normal' was so altered from his that they no longer had common ground. He puts this belief into action by regularly driving two hours to visit a friend who has Alzheimer's and stopping by weekly to simply hang out with me.
How then to relate to someone whose 'normal' seems both tragic and, on some level, too overwhelming to face? Everyone has a degree of mess in their life. Some people have signs on the doorway leading down like cancer or MS, that make one person's mess seem worse than another's.
As a person with a notably messy basement, a few suggestions are:

my 'normal' while seemingly worse than some, is just that, normal to me
don't assume that we can't relate simply because I seem comparably messier.
Know that, no matter how upbeat I may appear to be, the impact of MS with depression and loss and pain is always present.
I need people in my life, more than that, I need people to make a deliberate effort to stay involved. It is draining to have to ask for water, for rides, for more things than I can list. Tromping around in my mess isn't fun, but it is needed.

My normal bad day improved with my dog coming home; a cold beer; and a long evening of vegging on the couch with the occasional chuckle about how good normal bad felt.

This morning got off to a great start:

Someone flocked our house, that is donated to my church's youth program to come over and cover my yard with pink flamingos (a fundraiser). What a hoot! And an entirely new definition of normal.

Would You Like Soup With That?

2010-07-01T09:23:00.000-07:00

Imagine a lovely pot of perfect soup; beer cheese, beef stew, clam chowder, simmering gently on the front burner. Maybe rolls warming in the oven, the table nicely set with crudites, soft butter, and those new flat bottomed bowls that are more like plates. All is carefully ready for a truly delightful lunch.
Who am I kidding, any way? Or trying to appease? Too much salt has ruined the chowder, the rolls are freezer burned and rubbery from the microwave, and the table is stacked with dishes from yesterday, if not last week.
That annoyingly simplistic pharmaceutical ad asks, "What Does Depression look Like." Followed by a parade of somber folks sitting lumpily on the sidelines of life. Each could easily be identified by the imaginary 'life sucks' banner that hangs over their heads. Frankly, it would be great if I could be that out there with my internal world. I say I am hanging in there, I act happy, I do normal things. Do I have people fooled? What does despair look like? What does rage look like?
I am tired. The deep in my bones kind that sleep doesn't touch. I am sad. And, for once, I can't seem to find words to express it. I am bored, lonely, etc., etc., etc. Who wants to hear it. I certainly don't.
I'd rather have a lovely cup of soup and a slice of crusty warm bread with a pretty linen napkin tucked under my chin.
So, paste on smile (check); rehearse the appropriate and occasionally clever responses, (check); and wonder if I am fooling anyone.

To sleep, Perchance to Dream

2010-06-22T11:01:00.000-07:00

This week seems to be wrapped around dreams. From a sleep-shifting night terror to peeking inside my day to day dreams, I can't seem to shake the clingy cobwebs of dreams.
I've had night terrors all of my life. I define them this way, rather than as their much calmer cousins, nightmares, because of how the frightful creatures in my dreams follow me into wakefulness. The other night a gentle dream set in the neighborhood of my child life slowly transformed into a horror movie. I woke up, feeling pinned to the mattress, convinced that a dark figure was standing in the hallway. With prayer and breathing the oppressive terror faded. I reached for my sleeping husband's warm hand. His comforting aliveness anchored me as I watched the dark hours of morning pass.
Life is full of dreams. The biggies of how lives will be lived are sprinkled with the little dreams that in their sum total make up the story of a life. One of these, for me, is gardening. Women who love growing things runs through my life: my great grand mother and her roses, my maternal grandmother with her snowball bushes and pampas grass, and my own mom who has a gift for gardening and who has taught me most of what I know. I always planned to be one of those people with an ever changing, all season garden full of scents, and bees, and beauty. The first home we purchased had a flat lifeless yard and when we left a few years later, it was mostly unchanged. The rapid progression of my illness kept my garden dreams in check. Our new place had dying roses, hummocky green weedy lawn from foundation to fence, and a few weedy trash-filled beds. Over the past few years I've fought to improve the place. Spending money we can't really afford to hire out the heavy labor, a dear friend prunes my roses, and every time my mom stops by, she spends a few minutes clipping and pruning. The fact remains that due to MS I will never have the garden from my dreams. I won't spend long days hauling dirt and digging holes and joyfully grubbing around outside. Just lately I am starting to accept the reality of this.
Yesterday afternoon I sat on my porch with two friends. We are close to the same age, all have kids, and all have different challenges and losses. I heard in our conversation the yearning for similar dreams. The poignancy of raising children. The need for more time to simply be. The desire to create rich and rewarding lives.
It is easy for me to long for what I imagine they have: careers, busy schedules, volunteering and even gardening. I'd guess that they too see things in my life that they wish they had. Although it is hard for me to image what that would be.
It is interesting to consider that I have accepted my night terrors and learned strategies to go through them and can't seem to do the same for my day to day dreams that will not come true. This summer I have placed a few pots of flowers on my porch and enjoy watering and fussing with them. These few flowers aren't a substitute for my fading dream garden, but I do come inside with dirt under my fingernails and for now, that will have to do.

A Little Light Through the Fog

2010-06-08T08:26:00.000-07:00

For folks living in London in the Victorian era fog was part of every day. The fog is described as making the air feel oily and being a cloying choking sickly yellowish hue that could block out the sun at mid day. Amazingly, in modern times, fog is a rarity. The fog of Dickin's London was a toxic brew caused by smoke from burning coal. For these Londoners living with the human-caused toxic fog became so normalized that memory of life without it faded completely. Today, tourists are disappointed to find that the storied images of a foggy London are just that, stories.
MS is the fog in my life. Last week, after ten or so days of a bad virus, MS decided to remind me that my symptoms could be much much worse. Steadily in inches over the past ten years, my symptoms have worsened. With secondary progressive MS, changes don't come all at once. Unless they do. Sometimes, as in my left wrist one April day six years ago, weakness descends like a curtain on closing night. From one day to the next I could no longer lift my hand. It hung uselessly off the stump of my wrist. Oddly, my fingers seemed as strong as ever. Much of my focus is on the steady loss of function in my arms; first left shoulder and scapula, later the left wrist, and lately my right wrist and thumb. If I could patch my two arms together in a Frankenstein fashion I would have one rather workable limb. Another aspect of my arm symptoms is chronic nerve pain that descends from mid bicep to finger tip. The muscles knot and spasm. Using my hands and arms makes the pain and spasming much worse. Some days it is too painful to sort socks or hold a book.
I developed the false belief that my arms simply couldn't be much worse. Like the Victorian fog, I had learned to live with them. Last week, the virus triggered my MS and showed itself in searing pain that seemed to course through my arms like a living thing.
In the past, both my pain doctor and my neurologist acknowledged my arm problems with a resigned attitude that convinced me that nothing could be done. I was prescribed a standard nerve pain med that I faithfully took as well as a basic pain med that did little if anything for relief. I happened to see my new 'GP' doctor for an annual exam and in the course of our conversation I mentioned the chronic pain. He said that the level of pain I was in meant the medicines weren't working. He didn't discount my pain or shrug it off. Simple, straight forward acceptance and belief. The first ray of light from a member of the medical community in a long long time. His first step was to switch the nerve pain med (these type of meds aren't traditional pain medications-they work in the brain to alleviate what is triggering the nerves). Over the next few days it caused me to be drowsy enough to fall sound asleep at church. With the spike in my arm pain, increased weakness in my legs, and the mind numbing sleepiness, by Monday I had just about reached the end of my tolerance. I called the doctor back to ask how long the drowsiness would last and when to expect the nerve pain med to help, if it would at all. I mentioned that I was having an illness related exacerbation.
When the doctor's assistant called back, they offered me a stronger pain medicine. Never, in all the years I have struggled with truly terrible pain in my arms, has a doctor offered to help. I had so totally accepted, by my 'specialists' seemingly resigned acceptance of the pain, that there was nothing to be done. In a visit and a phone call my new doctor showed me that what was 'normal' as well as terrible, could and should be treated.
I wish I could say that the strongr pain med magically lifted the pain fog from my life. I can say that after two doses my level has dropped significantly. I feel like I can breath for the first time in days. I have enough reserve in my tank to write this. Maybe I will be able to read today. I am hopeful that the new nerve pain medicine will start to work (the doc said 7-10 days, which will be this Thursday or Monday).
I welcome this ray of sunshine as the sharp edges of pain are dulled and the hope that having a doctor believe in me provides. It isn't a cure or complete relief. However, belief in my experience and better medicine, give me something I haven't had in years: a little bit of hope that something can be done to make living with this type of MS a little bit better.

Question Series #1: One More Thing

2010-05-31T22:22:00.000-07:00

I sent out an email a while back to those who subscribe to this blog and asked them for their questions. This is the first in a periodic series where I will do my best to answer these questions. If you have a question for me, please ask.

Question: If you could do one more thing – go someplace – what would you do? A trip to Europe? Disneyland? Ride a bike? Just curious… maybe just go around that block without falling out of that chair.

My Answer:
I've read this question at least a hundred times and it rattles around in my brain like a frozen pea bouncing across the kitchen floor. After the, 'do one more thing...' I add, 'before MS started chipping away bits and pieces of my body.'
My first thoughts are grandiose ones, such as walk the Great Wall of China, go scuba diving in the Galapagos, or river raft through the Grand Canyon. The kind of things that go on the list of what I'll do after I win the lottery. It isn't long before I move to more middle of the road things that I used to be able to do and find myself yearning for: dancing at the local folk festival; camping in the Ochoco mountains; planting a vegetable garden; or throwing a dinner party.
I imagine that most people have an extravagant 'bucket list' that is more likely to fill dreams than actually happen. And, through time, or age, or habit, everyone has let things slip from their lives that used to give them joy or pleasure.
When I drill down past the extravagant dreams and the middlin' regrets and losses, I am forced to face the real answer. If I could do one more thing, I would wash my hair. I would drive to the grocery store and buy our groceries. I would cut my own meat. I would...this is where I lose it. I've let go of grand schemes and mourn the loss of the things that used to fill my life, but it is the relentless eroding of every little thing that is too much for me to dwell on.
I no longer have the life I wanted. Now, I know people want to point out how wonderful and worthwhile is the life I have. This makes me so angry. I can't do the simplest things. Some days my fingers are so clumsy I can't open the paper around a straw. Most days my husband has to slap on my deodorant and close up my bra. And on and on until the 'cannots' crowd out the 'cans.'
I wonder what is next? Forks are a challenge and spoons seem to roll through my fingers and cutting food into bite size pieces is almost impossible. Am I up for facing the day when I need to be fed? Will I wear a bib with grace or rancor.
These past weeks I have wrestled with how to live life with MS. If from here to the end of my days is going to be filled with a steady erosion of every little bit of my life, can I handle it? I don't want to be miserable all of the time. I know that it isn't easy to be my husband,my son, or my friend. Being in my world takes work. I don't want be a project or a mission or a burden. And yet, to survive, I have to find a way to be all of those things.

That's Good...That's Bad

2010-05-14T17:19:00.000-07:00

Everyone has something--some 'thing' that makes living tough: be it illness, a wayward child, a debt load, or a deeper pain woven into ones life. Mine is obvious, from the big ugly wheelchair, to the braces on arms and feet, my challenge can't be hidden.I try to imagine if each person's own particular challenge were as visible as mine, maybe small neon lettering floating over ones head, 'too much debt,' 'widowed,' 'lonely' 'hate my job' then my own wouldn't seem as remarkable.
This morning I woke up after a night of little sleep with intense arm pain and fatigue that was deeper than ever. I wanted to roll over, pull the covers over my head, and pretend I didn't exist. After an early morning nap (who naps at 8am?) I woke up muzzy headed and feeling no better. Again, I could think of no compelling reason to get up. It struck me that I could be miserable in bed or I could be miserable and sit in the warm spring sunshine on my porch. With water, a book, and sunglasses I settled in. My arms were hurting, I felt like a limp noodle, and then I noticed a cotton ball cloud slide by overhead and two birds soar past, and a neighbor began mowing their lawn. A few minutes later I heard the distinctive whirring that could only be a hummingbird. Magically suspended in mid air by my honeysuckle vine was the most beautiful bird. A thimbleful of scarlet and ashes, sipping from the sunset orange and yellow of the sweet smelling blossoms. It came back to visit 5 or 6 more times. Wonderful!

The 'Anna's' Hummingbird

The choice to seek and experience and express joy is simply that, a choice.

In indelicate contrast to my beautiful morning on the porch, the other evening I had one of those moments that is both maddening and humorous (in retrospect, only) My hubbie and I were watching TV. MS causes my colon not to work quite right. It is called 'low motility' a fancy way of saying that the thousands of muscles that cause food to digest are slowed down and don't work well. In practical terms that means I spend far too much time being painfully constipated with bouts of diarrhea and bowel incontinence and as a result spend far too much time in the restroom. Back to the other evening. I grumpily left the living room and headed to 'my throne.' As I sat and worked on a puzzle, there is no better way to say this, I kept noticing a horrid odor. I don't see well in partial light and, hoping it wasn't me, finally decided to transfer to my chair and call my hubbie to come inspect. It was then we discovered our old dog had had an accident on the rug in front of the toilet. We checked my wheelchair wheels (all clean, whew) and then decided to throw away the rug. A few minutes later we settled back on the couch. I could still smell the smell. When I moved back on to my chair to see what was going on I discovered that the couch cushion, my chair cover, and the back of my pants were covered in dog mess. Apparently, while in the bathroom, my pants had rested on the dog pile. No rested is too nice a word, more like swam in it. What a nasty mess! Not the way I had planned for my evening to go.

It seems easy to say one episode was good and the other bad. That one brought joy and the other unpleasantness. In reality, as snapshots of life, neither caused any change in my circumstances. I had to make a deliberate choice to experience the joy of a spring morning on my porch and the 'messy' evening just happened. I will always share real estate with progressive MS, my 'something.' And, every moment, I have to make the deliberate choice to not be defined by it.

I am sorry to say...

2010-05-06T10:25:00.000-07:00

What is wrong with me? If desire could be the catalyst for positive change in my life—I would be channeling Mary Poppins. I want to feel joyful, be thankful, and act full of life. Instead, I am as flat and unchanging as the Yukon River in February.
Of course, I know what is wrong with me; I have progressive MS, the root cause of the fatigue, pain, and depression that seem to define my every minute these days. Of course I know I am loved and wanted and that I contribute to the planet (blah, blah, blah) I can't seem to break past what I know intellectually and really give a damn.
If I try to separate out what is physiological, that is caused by MS and what is situational, that is the reality of being 45 and in the situation I find myself; it is much like trying to sort a basket of sewing needles by the sharpness of the point. At the end of the day, I only know that my fingers are endlessly sore from being pricked.
I haven't written in the past couple of weeks. Honestly, I haven't had much to say. My life seems unchanging and uninteresting. I worry that my 'audience' will tire of my tiresome life.
In rereading the previous words I can't help but feel that I am at once both too frank and too without hope. Yet, when I take a clinical assessment, I am being honest in the options left to me.
The silver chord that holds me together is my faith in a Heavenly Father who leads me to eternity. Yet, this promise is the future. Today I must brush my teeth, put on clean underwear, and be out for a series of appointments. Is the day coming when I can no longer do this? Is that day today?
I don't have any answers. I have 1 hour and 50 minutes to paste myself together. To somehow overcome the nerve pain that is like a living thing in my arms, put aside the fatigue that lays over me like too many layers of heavy wet blankets, and slip on the 'public' me. Beneath it all I cling to my faith and knowing that I am known all the way down to the whorls on my toes, by a God who loves me and accepts me as I am:

^{From Psalm 119...}

²⁵ I am laid low in the dust;

preserve my life according to your word.

²⁸ My soul is weary with sorrow;
strengthen me according to your word.

Update: the Good, Bad, & Ugly

2010-04-21T13:18:00.000-07:00

I am typing one handed and with my non-dominant hand. It isn't an experiment in being a lefty, but the result of spraining my right elbow in a truly scary tumble from my chair to the sidewalk on Sunday afternoon. I was rolling down the street and with my poor peripheral vision, managed to abruptly drive off the sidewalk, have my front wheel drop into a hole and the jarring impact tossed me out of my chair.
The bad is that I was holding a 9-month old baby when I fell and the good is that she wasn't harmed. Her mom complimented me on falling so protectively. I think that an angel was protecting that little girl, through me. I would gladly have broken any of my bones rather than have anything happen to her. Another good is that while I am achy, bruised, and twisted, for the most part my injuries are quite minor.
Ugly is wading through the frustration and anger of another setback. My MS symptoms are predominantly left sided and I rely on my right side to maintain some semblance of normal. My right arm is how I drive my chair, transfer, sit up, eat, and on and on. Now, after two days of forcing my left arm to do more, it is becoming weaker and the joints are hurting. Exactly how am I supposed to be armless?
I have bruises on my leg, ankle, butt, and elbow. And, my confidence in being in the world. Already my 'alone' world was reduced to walks around the neighborhood and my house. Now, I have to face that even in walks within a few block radius I can fall and be hurt and stranded. I had a friend with me this time, how could I dare to go out alone?

Wanted: Magic Bullet

2010-04-11T12:46:00.000-07:00

For the past 10 days I have focused on Friday's nerve injection as the answer. If not a cure for MS, at least a 'sure thing' to ratcheting back the pain and improving every corner of my life. As if, I would come home from the doctor, dance a pirouette, find my kitchen remodeled, and my own personal rainbow decorating the backyard. What I let slide into the dark corners of my mind is that I have an incurable, pain in the neck illness that has the habit of flooding every area of my life.
I made the mistake of starting to think that 'normal' would return instantly and that that 'normal' was something other than life with progressive MS. Instead, it is Sunday morning and I am struggling mightily with head pain, fatigue, and the disappointment of only incremental improvement. As I have cancelled one plan after another all through Saturday and into today, I am having to face that Friday morning was a bandage and not access to an elixir.
Yesterday morning, I did too much. On a sunny Saturday morning, one might read that and think I woke up, made pancakes with bacon, spent a couple hours in the garden, worked out, then did weekly chores as well as some Spring cleaning. In reality, doing too much meant rolling around the neighborhood for 10 minutes while my hubbie walked the dog, then coming home and writing a Thank You card. By 1pm I fell into bed and slept like a dead thing. Then my dad came by, trounced me at cards and left after about two hours. I laid on the couch for the rest of the evening and was in bed by 8pm. I had hoped to go to church for the first time in a month this morning, but by 8:30am knew that wasn't to be. It is 12:30 and I can't seem to work up the energy to get out of bed. My head still hurts, although maybe a little better, and I feel like a rung out dish rag.
Maybe one of the hardest things is responding to the hope I hear in people's voices when they ask how I am. I feel like I am disappointing them when I can't give a better report. Even though I realize that the question comes from deep care and concern as well as the hope we all have that something, anything will help. I am only reminded that once again, this illness rather than my desires control what I am able to do. No amount of rest, or planning, or any 'magic bullet' can make me able to do something, no matter how much I may want to.
A little earlier, my hubbie brought home a bouquet of purple alstromeria and mums from the store. He is putting them in a vase that a dear friend gave me for my birthday. I am listening to soothing music. My dog is curled up next to me. This will have to be enough. Cataloging these many simple blessings becomes my own rosary. A prayer of thanksgiving for life.

Sound, Light & the Fury

2010-04-05T20:14:00.000-07:00

Occipital Neuralgia sounds like some tropical disease that early explorers would catch from a rare parasite at the headwaters of the Nile. Actually, in my head it is many things: pulsing stabbing burning pain that spreads neatly along the right side of my head from my neck to my forehead and down to almost my ear; random stabbing pains in my right eye; and, in many ways, the worst is, sound and light sensitivity.
Sensitivity seems like such a namby pamby word. Although, when I check out the meaning, maybe it is a better descriptor than I first thought:

sensitive • adjective 1 quick to detect, respond to, or be affected by slight changes, signals, or influences. 2 delicately appreciating the feelings of others. 3 easily offended or upset. 4 kept secret or with restrictions on disclosure.

1 Today a giant snare drum player has crouched over my home and loudly played intense unrelentingly beats on my roof—what everyone else calls simple spring rain. I have heard and counted every drop. The sound scratches and nibbles at the corners of my mind and nothing makes it go away. Last evening my husband dared to turn on the dining room light. I began to go insane. It is as if someone has taped my eyes open and I can't escape the penetrating persistence of it. When he shut it off, it was like diving into cool water on a hot day, the relief was total and instantaneous.

2 Delicate appreciation of others—bah humbug. Since I can't be nice I stay hidden in my cave and growl at the bridge crossers. Talking on the phone is hard, TV commercials are dentist drills, and crowds feel like my brain is in a blender.

3 After 24 years, I am still not brave enough, or is it foolish enough, to ask my hubbie if I am easily upset and offended right now. It is a fact. I am sure that if I am finding the world at large and interacting with people in general akin to running a cheese grater over my brain, I am definitely a witch at least two or three times a day. Nuff said.

3 If I could only weave a hat that others would slip on to experience this sensitivity. By its very invisibility, it becomes a secret. Certain sounds and lights can simply overwhelm me to the point that I can't think, or understand, or be rational.

And so, another day is drawing to a close. I have survived inspite of this maddening sensitivity. Sleep is a welcome respite. And, since I am a tough cookie, I will make it through tomorrow too.

Not Regret, but Fodder for Dreaming

2010-03-31T21:20:00.000-07:00

Attention to health is life's greatest hindrance. — Plato

I think a high school journalism teacher, or maybe the owner of a bed and breakfast, or a modern dancer with muscular feet...at least I like to dream about the person I would dare to become if I could crank back the time table of God's universe, and, knowing what I know now, go back and live my life again without MS.

What choices would any of us make, if we knew for absolute certain sure that at a certain point our lives would be subsumed by a debilitating illness. On one hand, the sensible decision I made to go to work for the state gave me the health insurance that provided top-notch medical care early on and the disability benefits that provide most of my livelihood today. It was a deliberate choice to leave behind my late-20s BA in Journalism and my dreams of working in newspapers and magazines and go "backwards" into secretarial work simply for safety and security.

If I had known that I only had 10 more years to pursue a profession, would I have, could I have found a way to overcome the practical voice that led me to a safe job and instead pile my family into an old van and head out and see America and then to keep driving until our tires touched the southern edge of the continent. Then, of course, write a book about our travels that would fuel us on to further adventures.

If I could have peered through the murkiness of time and known that all of my dancing would be over before I was 40, would I have danced more? I say I miss dancing, but in all honesty, I didn't make it a priority or, a risk back when I had a choice. In my hometown, at countless summer music festivals a big part of the entertainment is watching folks in wild outfits twist and dive with arms outstretched and heads tilted back. Seemingly one with the music and seemingly utterly unconcerned with social norms. I have always secretly envied them their bliss.

I am held tightly by the bounds of doing things that are safe and guaranteed not to draw attention. I can clearly see the irony in my whirring, twisting, ever so un-missable wheelchair. No matter what, I can no longer fade into the crowd. Knowing that this is my now and I live life right smack dab in the center of a spotlight in a world filled with the walking.

I never wanted to be a rock star or an astronaut or a beauty queen. Fame hasn't cast a spell that held any allure. I have to admit that having enough fundage to say airily that money doesn't make one happy, is a problem I would like to struggle with. It isn't about regret, more a place to dream.

I often remind God that I would like to be a dancing girl at the gates of Heaven and I want the entire enchilada: cymbals, dark purple veils, and bells on my toes, as Mary Mary sing so well, "take these shackles off my feet so I can dance."

Morning as Metaphor

2010-03-26T11:11:00.000-07:00

These past few weeks have been a tangled ball of stuff that seems to defy my efforts at untangling. A mix of scattering of highs, lots of lows with occasional trips into the basement and lower to the dungeon. Fatigue and pain seem to be constant, while my emotions jump unreliably all over the weather map. It is hard to know what to write about since I can't seem to settle comfortably into one spot.
I was determined this morning to do one positive, life affirming thing. Something more than brushing my teeth, slapping on deodorant, and, on a better day, changing from jammies to sweats. Something more than endless games of solitaire, scrabble, and lite reading. I am planning to do a surface upgrade to my kitchen so that it is finally, once and for all, accessible from my wheelchair. This involves rearranging, removing the bulky island, and installing a new wheelchair friendly work area. Not that I am planning to do any of the work myself. Those days are long behind me.
Back to this morning. I made rough measurements, which took me all of 10 minutes. Cleverly, I measured one tile on the linoleum, then just counted the tiles. Then I climbed in bed, opened a spreadsheet on the computer, and entered the data. Now, the fun part, I thought. Scoot around on the internet and shop for ideas and prices. Up to that point, I had spent all of 15 minutes, at most. Sitting and staring at my computer I had to face the fact that I was too tired. Too tired to surf the internet. Ridiculous.
The story of my morning illustrates why it is so damnably hard to get through my life. I am barely 45 and apparently my days are reduced to a narrowly defined set of activities. Yes, sometimes I still push past the boundaries of advancing MS. But, when an overnight away from home sends me into a 5-day tailspin and counting linoleum floor tiles taxes my brain into mush, it is difficult to want to, let alone try to do more.
side note:
Friends & family who read my blog. I know my posts lately are tough to read. I am not going to apologize for that. This is a place where I need to be open and honest. Thank you to all for hanging tough with me. One thing faith has taught me is that a fair amount of fortitude is necessary.

Quite a week

2010-03-18T20:53:00.000-07:00

Gather Ye Rosebuds

Last Friday evening, the 12th of March, I was sitting in the middle of a birthday party surrounded by some of my dear friends and family and it was for me! Cake, Food, Flowers. Really, Really wonderful. The day before, my actual birthday, my hubbie woke me up with a handmade latte, a pile of presents, a call from my son who is 3,000 miles away and as the day progressed my father brought lunch over and then whipped me at several games of cards. At the close of the day my brother and his son called from Vermont and sing me a medley of birthday songs. My nephew is a young lad of 7 and his sweet true voice sounded like heaven on earth. This wasn't enough celebrating, on Sunday my sweets and I were scheduled to go on a little trip so I could spend time with another close friend. Boy, do I love everything about birthdays. Even getting older ain't so bad.

So, imagine my dismay when on Saturday, first the old man, then me a few hours later found ourselves in the midst of a bad bout of stomach flu. We cancelled our trip and hunkered in. {every couple should go through the stomach flu together=once} By Tuesday he made it through a half day of work. Unbelievably I was still sick to my stomach and had developed a raging head cold that seems more like a virus. I have a temp, a rash, a plugged head and on and on and on.

Oh, did I mention that all this illness has made my MS rear its ugly head.

I am realizing in this dramatic juxtaposition of events: from the heights to the lowest cruds in just a few days that I need to dig my toes into the warm earth of good days. Turn my face to the sun when it is shining. If Thursday and Friday were my last days on this blue ball, could they have been any better. Don't know how. I am surrounded by people who show their love in so many ways.

So, maybe this endless flu is teaching me to revel in the less grand moments. Everyone should celebrate their birth, being alive, and being loved. Everyone should build a life full of living.

Finally, a Use for Something Useless

2010-03-09T10:14:00.000-08:00

As much as I love food and all it involves; the recipes, the shopping, the planning, the preparing, and the sharing—I have never understood Aspic. For those who don't know, aspic is, for all intents and purposes, savory Jello. So, with Aspic, one takes bits of veggies, cheese, and meat in some combination and suspends them in meat broth that is solidified with gelatin. I retain a clear mental picture of making my way down a fancy wedding buffet line and spying an entire beef tongue magically rolled out in a loaf of jellied veal juice surrounded with olives, hard boiled eggs, and other dibs and dabs. And, don't get me started on Jello. It is close to the top on my list of least favorite foods, and it certainly shouldn't contain anything from the savory side of the food line. I was offered more types of Jello during a year of MS Novantrone chemotherapy than I can count, but the lime green one with cheese, peas, and lettuce remains unforgettable.
Finally, I have a reason to be appreciative of my experiences with Aspic, Jello, and any other gelatinous foods. At least in an illustrative sense. You see, fighting my way out of the rough spell I am going through feels like I am trying to swim through a sea of Aspic. I regularly encounter chunks of good solid things that should be enough to propel me higher, but then I find myself still stuck and sticky.
Shouldn't I be able to count my blessings and dig myself out of this funk? Things, in no particular order, like:

As a mainstream American I enjoy more 'stuff' than something like 96% of the world. House, medical care, groceries, cars, etc.
It is my birthday this week and I am counting on friends, family, presents, and cake (Yum, Cake!)
Spring is springing, the sun shines, and my street is wearing a drift of pink petal snow from the cherry trees.
Good books, music, and movies
My impatient, bossy, snoring dog
Wise counsel from several sources

In spite of or maybe outside of all of this blessing this pervasive blahness remains. And, as much as I am perplexed by aspic and averse to Jello, I would really like to find a way out of this.

True Confessions

2010-02-26T15:09:00.000-08:00

I will give you
the treasures of darkness

And
hidden wealth of secret places,

So that you may know that it is I,

The LORD, the God of Israel, who calls you by your name. Isaiah 45:3

I saw this verse at the end of a book I was reading this morning and ever since I have tried to grasp what treasure and wealth could possibly be mined from dark and secret places. As mentioned previously, depression is the giant ogre I am currently battling.

Sister Theresa, who remains the embodiment for living ones beliefs, was recently revealed to have felt cut off from God for much of her life. And yet, she lived a life of faith and compassion; changing the life of countless people.

For me, who certainly isn't expecting sainthood at any point in the future, a byproduct of the one-dimensional, grey-scale world that is depression is this tooth-achey feeling that I am separated from God. That I cannot quite work up the energy to break through the fog that seems to flow between me, God, and the world. These song lyrics (by Jack's Mannequin) "I Called on Jesus, but He didn't check His phone today..." daringly put into words a feeling I haven't heard many Christians express.

This is depression, I know. It is an elephant sitting on my head, cotton wool clogging up my brain, and Marley's chains insidiously holding me down.

Maybe the treasure of darkness is surviving it. The self knowledge that I have conquered another day. I saw the darkness and dang nabbit it didn't get me this time. And, if I am fortunate, the wealth from secret places will come from being open with my depression. Maybe someone else can relate to and even be helped by my experience.

Another aspect is not allowing my feelings to dictate how I live my life. If I did that, who knows where I would be. Probably stranded and out of gas in an old rusted out beater, all alone in the middle of Death Valley. Instead, I remain committed to tomorrow, to praise and prayer, to family and friends. The real treasures of my life.

Job Posting: Not For the Faint of Heart

2010-02-22T09:16:00.000-08:00

I started this post last week and couldn't find the words to speak with an authentic voice. Right now, depression is kicking me in the rear end and I don't have much enthusiasm for anything. My world feels one dimensional. It is commonly misunderstood about depression that people who suffer with it will be sad and sit like a lump in the corner. I tend to put on my shiny happy face to the world and deal with it internally. I am doing all the right things to care for myself; working with a doc on meds, talking with my fabulous counselor; and most importantly, being open about my struggle. Depression is a byproduct of MS and therefore very difficult to treat.

Something I am working on is putting away the happy mask and being more authentic. Not sure yet what that will look like, but I am working on it.

To not put too fine a point on it—opting to be in the life of a person with MS takes the guts of arctic explorer Shackleton, the determination of Joel Waul (who?), the compassion of Sister Theresa, the creativity of Alexander Calder (who?), and the humor of Gilda Radner.
What then is the role of the person with MS? My tendency is to feel obligation and guilt for the extra load of crap that this illness dumps on everyone around me. I say I am fine when I am drowning. I eat my casserole without added salt because I can't bring myself to ask for one more thing. I say I am sorry over and over to cover up the way it makes me feel to ask and ask and ask.
I am slowly coming to the realization that for those who have chosen to stay I am not in control of how they choose to react to my requests. Nor am I responsible for the choice of friends who have slipped away.
I have to stop saying I am sorry for asking for help, sorry for being in a bad mood, sorry for being sad, sorry for being sorry. My MS story includes chronic pain, pernicious depression, and cognitive and physical deterioration. And, if people are honestly willing to stick around, they are signing up for extra ordinary duty. I need help. All of the time. And it sucks to be needy.
I am trying to peel away the layers of guilt and obligation and accept that this is my life, these people have chosen to be in it and together we have a challenging journey.
So, I am not sorry - and, maybe I need to carry around a roll of quarters and ask everyone to fine me it they catch me saying it.

Thank you for choosing to be a part of my life!

Kubler-Ross Missed a Stage or two.

2010-02-06T14:39:00.000-08:00

Years ago a therapist suggested that with MS each decline, physical loss, pain episode and other changes in MS's bag of tricks will trigger a new, completely separate, journey through the Five Stages of grief. So, as a season ticket holder on the MS roller coaster, with its hair-raising turns and stomach tumbling twists, I could expect to live life in a never ending state of grief.
The comforting thing about Kubler-Ross's stages are that they have a beginning and an end. That means that at X point tragedy strikes and as time and circumstances permit, one could claw their way through a process. Might take 2 months or 45 years, but it would have stages...It is difficult to put into words, for I am in no way suggesting that a singular tragedy can be tidily broken down into discrete chunks or manageable chapters. All I am trying to say is that if the supposition is true that every MS loss starts a new journey through grief, I live in a kaleidoscope of grief stages that have no beginning, middle, or end. A compost pile of denial, anger, bargaining, depression, or acceptance.
Today's Bizarro Comic shows a person having a pie fight with the grim reaper and the caption reads:

Last Stage of Grief: Comedy

What a fabulous idea, rather than being caught spinning in an infinite web of Kubler-Ross's devising, I add to and embellish as I fit. Other stages I propose are:

Irony {a state of affairs that appears perversely contrary to what one expects} What am I doing sitting on the floor in front of the toilet?
Discombobulation {thrown into confusion} where am I, how did I get here, and didn't I know how to do this, like five minutes ago
Phooey {disdain or disbelief} expletive, expletive, expletive, followed by childlike wonder at how quickly a glass of water can slip through a hand.
Droll {amusing in a strange or quaint way} keep watching me, I might do a trick-as my body moves to its own drummer, or feeling like an unwilling participant in a freak show

I will keep considering others that occur on this journey. Let me know if any occur to my friends and family who are reading along with me in this fight.

Roller Coaster Update

2010-02-03T13:25:00.000-08:00

Brain, Brain, What is Brain?

Thank you, Leonardo for finally helping me see what my brain on MS looks Like! Or at least feels like...

And, thank you to everyone who has emailed and commented and prayed and helped out over the past few days. We are still here and some things are better. I am always so glad to be able to report that. Here is the latest:

I saw an ENT on Tuesday and, amazingly, he was knowledgeable, believed me, and told me this throat closing thing isn't going to kill me. I say that rather flippantly, but, after four years of that flitting around on the edges of my consciousness, I am over joyed.
Apparently the throat spasm is triggered by a signal from my brain and if I were to pass out, the signal would be interrupted and my throat would open up. I am seeing a speech therapist to work on this and taking a new med.
My cough is helped by the med-but it makes me loopy. Not too surprising given my life long membership in the blonde camp. And, that the doc said only a few MS patients get loopy from this med!
As I suspected my intermittent nasty sounding cough isn't from sinus or throat problems. Nothing quite like having a nasty tasting numbing medicine sprayed in your nose followed by a scope. Not my favorite test, I must say.
So, I am tentatively eating solid food, swallowing pills and trying to let go of the fear and panic that Sunday's scary episode brought to the surface.

Again, thanks to all for the love and support. Especially my hubbie who stands by me through everything-even magically procuring an emergency appoint with an ENT for just 24 hours after he called my neurologist.

Take a wild ride on the MS_symptom rollercoaster

2010-02-01T08:24:00.000-08:00

Yesterday was all over the map in MS adventure-land. Started my day with too much arm pain and fatigue to make an attempt at church, later the sun came out and hubbie and I took our dog on a longer than usual walk, and after a couple hour rest, I even managed a trip to the grocery store. The kind of day that might seem normal to some, but for me was tilting more on the plus side.
In seconds that all flipped on its head. It seems that the way MS manifests itself in my body follows a simple rule: if it is odd, rare, unheard of, or untreatable then my body says, "come on in and join the party."
One of the reasons I stopped working was a diagnosis of laryngeal spasm. As simply as possible, this condition is the weakening of the nerves that control the opening that leads to the larynx. Sounds rather benign until one considers the word 'spasm.' As in sudden tightening of muscles, that, in this condition, causes coughing and choking and, rarely, causes the throat to snap closed. The doc warned me this could happen any time, any where. I was deeply scared at first, imagining myself suddenly unable to speak or breath, but after years of on and off bouts of coughing, swallowing trouble, and drooling, and no outright episodes of not breathing, I thought I had this particular annoying symptom under control.
So, back to yesterday. Manageable day, throw in a load of laundry, see about dinner, and watch a movie with the old man-no problem. As I carried an armload of socks and underwear down the hall, my throat constricted and I couldn't breath. No speech, no air, nothing. I have never been so scared. I pounded on the wall and J came running. Suddenly, my throat released and I could breath again. Seconds only, but, for me time collapsed into an indescribable jumble. J held me, rubbed my back as I coughed and gasped. Slowly, the episode faded. I had peed all over my self. Since everything seemed back to normal I went to change and clean up. It happened again.
And again.
For the next two hours, at random moments my larynx would snap shut. It felt like the hand of a giant, no an evil imp, really I don't have the words to describe the terror I felt.
We did the whole hospital debate. What if my throat didn't open up again. I could die. But, there is no emergency treatment for this, short of tracheotomy. I ghoulishly suggested John should go sharpen a phillips-head screw driver. Crazy as it seems-cost factors in-both the wallet and emotional kinds.
People, even docs, don't get MS. I just couldn't face sitting in some ER, dealing with all of that crap, and having to explain and defend my illness.
I made it through in the only way I know how: with my sweet husband by my side, calling the family medical expert, and sending out an urgent prayer request to my church family.
I refuse to be defined by or controlled by MS. I am still clawing my way out of the web of fear that this episode caused. It is right there, a whisper of thought on the near edge of my mind: when will it happen again, when.
I coughed so hard last night that my weak shoulder slipped a bit out of its socket, J is getting to be a pro at popping it back in-so it hurts this morning. The tendons in my neck are tender so it hurts to move my head. My throat is raw and I keep coughing. I have a searing headache.
And, I have fear.

Aftermath

2010-01-28T09:37:00.000-08:00

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

Complicated Math Equation that is Life with MS

2010-01-26T08:05:00.000-08:00

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.

Just call me...

2010-01-15T11:00:00.000-08:00

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:

J3½

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:

J6½

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

Joy to the World?

2010-01-05T13:32:00.000-08:00

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

Living in a high energy environment

2010-01-02T17:12:00.000-08:00

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.

My version of A Christmas Carol

2009-12-24T09:16:00.000-08:00

Warning, this one may cause emotions, best not experienced on Christmas...
Such a swirl of emotions and jumble of thoughts are spinning through my mind this morning that the Merry in Christmas seems far away. I need to try to work through it all and see if I can find some way to put a brake on my nasty temperament that doesn't involve bawling.
Yesterday I said something so thoughtlessly mean to my precious son that it takes my breath away. My brain is peppered with birdshot and I can't seem to bring order to the chaos. My irritability is some mix of grief over what I can no longer do at the holidays (wrap presents, cook, see family, have enough energy to go to the Candlelight service); irritation from lack of sleep and knee-buckling nerve pain in my right eye and left thigh; MS caused depression; and a yearning for life without this illness. And, to be truly honest, the wicked echoes of a childhood trauma that is linked to this particular holiday.
Living with me right now is like knowing that there is broken glass embedded in the carpet that won't vacuum up and just when you think it is finally cleaned up, you cut your foot. I've always been the happy, outgoing, friendly one and right now, I would give just about anything to find that girl again.
My first inclination is to think my irritability is over having to release my internal list of how things should be done, or more accurately would be happily, and busily done by me, if only, if only. Very few people in my life judge me by what I can't do. And, I am just about to the point of not caring what these few do and say. Almost.
The bigger mystery is how to let go of my desire for a certain life that is no longer mine. I know intellectually that what I have is plentiful and enough. I also know that I am not spending this holiday living on the streets or in a nursing home. So much is right here all around me and yet, the tears and longing stay overwhelming.
And, the guilt of writing such a depressing posting on the morning of Christmas eve. I have to remind myself that you all; my family, friends who make up the majority of readers for this blog afford me endless support and empathy. I will do my best to have a good cry and then focus on my 'haves,' while finding room for the ghosts of Christmases past.

My Christmas list...hurry, only 3 days left

2009-12-21T15:39:00.000-08:00

things I wish for this Christmas:

that everyone take a few quiet moments to connect with the Creator and the miracle of this season. This is my favorite Christmas carol, Enjoy!

that all those who want for family, or medical care, or a warm place, or a warm meal would find what they need
that I and others would be moved to spontaneous acts of sharing and giving through this season and into the new year
that my pernicious illness would lay low for a few days
that my Vermont family would miraculously appear on Christmas morning
that my Alaska family would also
that a good friend's long-haul trucking hubbie would make a safe and timely arrival

things I want this Christmas:

that my boy makes it all the way home from the East coast in plenty of time to enjoy the holiday.
a pecan pie (I'd share, I promise) and/or white chocolate with peppermint in it; oh, a a little champagne too
time with friends and family
peace and quiet to savor the wonder of this season

things I have for Christmas:

more than enough to eat, a comfy warm home, and my dog snoring blissfully by my side
dear friends and family
enough health to get by

things, If Santa were real or I won the lottery, I would ask for this Christmas:

I found out today that the Honda Element can be converted. Sorry hubbie, I have a new love.....

Merry Christmas to All

I Think I Thunk What I Thought I Thunk

2009-12-10T14:34:00.000-08:00

Brain, Brain, What is Brain:
I've started the latest post two or three times in the past week. Thoughts skitter in my mind like raindrops against polished glass. No one thought seems to stay long enough to form into a complete topic worthy of writing about. Thought and one's mind are, on one hand, like breathing, the body has lungs, resulting in breathe. Thoughts and the processes of the brain, on the other hand, give structure and meaning to the very essence of who we are. Brains are essential for the nuance of creating a symphony and the subtle language of writing poetry. Not to mention the humdrum of living, and doing, and being.
Brains are also at the center of multiple sclerosis. One of the first presentations I saw on MS featured chilling slides of brain MRIs with gaping black holes staring out of the squiggly grey matter that is brain. This was the first inkling I had of what my future could be. Once, at an MS community event, a woman in her mid-forties was there with her family. Her mental function was completely gone. She laughed and babbled senselessly. The image of her haunts me to this day.
MS optimists don't like to talk about the 'ugly' side of this illness. The resulting silence leads to fear and questioning. The 'new' disease modifying drugs show efficacy when it comes to preventing 'black holes.' I do take comfort in this as I inject myself day after day for the past 10 years.
And yet, every forgotten appointment, missed deadline, and subtler mental stumble, leads me to question the MS state of my mind. When I hear folks say that it is just part of getting older, I realize that they don't understand the fear I live with or the future I face or the subtle changes that chip away at my abilities. The first one I noticed was years ago. I could hear a phone number over the phone and write it down when the call ended. Something I had always done without alot of thought. I suddenly noticed I had lost this ability. Poof, gone. Just a little chip, not consequential, but still part of who I was.
Lately, the fear is front and center. The pace of loss seems to be increasing.
Intelligence, mood, and persona don't reflect cognition. I am still a smart cookie who is mostly upbeat and outgoing. Cognition and structuralism are defined as:

cognition: (noun) mental acquisition of knowledge through thought, experience, and the senses.
structuralism (noun) a method of interpretation and analysis of human cognition, behaviour, culture, and experience, which focuses on relationships of contrast between elements in a conceptual system.

MS cognitive loss is much more subtle and troubling than mislaying ones car keys. It is losing chunks and bites of things and living with the fear of not knowing if or when I will mislay who I am.

Tis the Season to be.....

2009-12-01T11:13:00.000-08:00

   What is it about this season that seems to amplify everything in life. My pastor's monthly newsletter column captured, for me, the challenge of Merry Christmas: "Have you ever noticed that there is something about Christmas that turns up the volume of whatever we are going through? If things are good it makes them seem even better. But when things are bad it makes it feel even worse. It is amazing to me that during this time of year when we celebrate that Jesus came to give us hope, some people feel the most hopeless." (Barry Lind, pastor Northwood Christian Church)
   It is as if the Joy, Hope, and Blessing that exemplify this season are just out of reach-hiding behind an opaque barrier that I can't seem to bust through.
I spent an hour this morning talking with a woman who is fighting to not have her home repossessed. She is a single mom, works two jobs, and is drowning in medical debt. Her ex won't pay child support. She is struggling to 'hide' all of this from her kids and give them a special Christmas. But, I could see that she is barely hanging on. Thank God for the BLESSING that is having a committed spouse, a secure roof over my head, and plenty of food to eat.
   My son came home unexpectedly for Thanksgiving. His college is on the other side of the country so during the school year, we only see him at Christmas. The gift of 10 days with him was such an unexpected treat. At times I miss the little boy who used to jump in my bed and snuggle. At the same time, it is wonderful to see him growing into such a great man. For the holiday he baked three amazing pies from scratch-carrying on the family tradition of skilled cooks. Thank God for the JOY I find in my son, my family and my friends.
   I don't know about HOPE right now. It seems especially far away. The consistent presence of God in my life is my lifeline. I find myself getting bogged down in the seemingly insurmountable obstacles of the past few weeks: a new wheelchair lift, a new heating system; and other costs both material and spiritual that whirl around endlessly in my head. I am struggling with depression and nerve pain. Somewhere in there is hope; I just have to find it. I choose to thank God for the whisper of hope that sustains me.
   The answer to this might just be found in the title for this post: Tis the Season to BE. And that is enough; not be merry, just be. Every moment that my heart beats and my lungs draw air is a gift. Things like playing cribbage with my Dad and warm slippers and a snoring dog are simple pleasures that give meaning to my days. I renew my commitment to live the life I have and to hold to the things that make life livable.

Finding the words on Jon Stewart

2009-11-20T07:40:00.000-08:00

I've tossed around ideas for a post about Thankfulness. Not the easiest concept to put into words with originality or sincerity. A top 10 list would obviously include family, friends, a roof, breakfast; subtler things like breath, and cellular structure, and the wonder of new born life are infinitely more complex and seem to defy definition. So, at 6:30am, with drenching rain outside my window, a bowl of oatmeal in my lap, and the Jon Stewart show playing on my laptop: out of nowhere comes an unexpected gift. For those who don't watch his show, it is usually 30 minutes of jokes and commentary on modern American life. A welcome respite, but not the expected source for tears of gratitude and, finally, a way to express that thankfulness and gratitude are choices that we make.
Today, on the show, his guests were two guys who form the musical group Jack's Mannequin. The lead singer survived leukemia and has just released an album that he wrote during his struggle.

My thanksgiving thoughts are eloquently and powerfully shared in these two songs. Below are the links to the videos on Youtube. Turn on your speakers and take a few minutes to listen. I still have tears in my eyes.

Of life before and after the twins...

2009-11-14T13:50:00.000-08:00

After my previous post where I said, " I sat down to write this more out of obligation, " I received an email from a dear friend who I've known for over 20 years. She asked me to explain who and what I feel obligated to. This question is a fair one. I will do my best to explain something that I don't necessarily have the words for. Obligation and Guilt are inter related and the cojoined evil twin emotions of Envy and Jealousy, (that I wrote about previously.)
In some twisted way I would rather have taken a bad dive into a shallow swimming pool and come out a quad on a ventilator. I would have a fixed point that I could refer to as when everything changed. A fixed event in time that could serve as the moment my life detoured. And, from that fixed moment, have a defined reality and choose to build a life from there....or not. I would have to decide to live with the shattered dreams and somehow accept this new body, this new way of being.
MS is a different kettle of fish. My hand therapist and I were discussing my oddball hand tremors and arm jerks. I told her that my neurologist asked me why my hands were doing this--as if I were the expert. My hand OT said that every MS patient she sees has a different set of symptoms, a different level of disability, and, I infer, a different experience of life with MS. This illness doesn't hold to a recognizable set of milestones. 'yes, Janine, we're sorry to say you have MS and within 5-months this will happen, and we can use this treatment, and odds are your life will be like this.' I live in the land of uncertain, unknown, and undefined.
How then do Obligation and Guilt have a ticket to the dance? Envy is my longing for something I have lost; Jealousy is a dark heartbeat that desires what someone else has; Obligation is my desire to be the wife, mother, daughter, friend that I long to be and can no longer rely on to do her part; and guilt is my grief and sadness over what MS has stolen from me.
No one in my circle wants to flat out say it. So I will. This disease has fundamentally altered all of our shared dreams and expectations. Most of my circle knew me 'before' and that life long intimacy leads to certain expectations. I am sure my parents and brother never thought that this MS-centric reality is where we would be back when I was a little girl tramping around on back country trails. Or, when my hubbie and I first danced late into the night 23 years ago, that we wouldn't still be dancing now.
This wicked twist of fate spins into Obligation and Guilt. Obligation (and desire) to be able to live what should have been my life--Be the wife, mother, daughter, friend that I wanted to be. And, Guilt for the altered shared reality with those whom I love. It isn't easy to have MS nor is it easy to share the life of someone who does.
And so, all knotted up together in a giant rubber band ball are the complex emotions of envy, jealousy, obligation, and guilt. For who I long to be, and am slowly, steadily, and relentlessly, losing.
I am deeply grateful to all of you who are willing to be a part of this journey. I don't think I would make it without the amazing people who have chosen to have MS with me. Thank You!

Announcing New MS Geography Club

2009-11-12T08:56:00.000-08:00

I sat down to write this more out of obligation than a burning desire to share any news. Maybe I should found a new MS organization called something like the Flat Earth Association for MS (FEAMS). Have I finally gone over the edge and lost my mind? Probably. What I mean is MS is a great leveler--not in terms of something that puts people at an equal standing, but more a steady, slow-moving bull-dozer that is relentlessly flattening my world.

I've been concerned that my posts are too depressing lately. I am selfishly writing this as a creative outlet for me to explore and explain my world. If I censor my words to appear as one of the 'shiny happy people' I lose my authentic voice. These past few weeks have been grim and so has my outlook. So all I can say is that those of you who read my blog will have to hang in there with me as I work my way through this.

As the founder and only card carrying member of FEAMS, I embrace the belief that the earth is flat and, yes, I may have gone over the edge. I just don't seem to be able to channel Columbus's energy and drive to sail off into the unknown and "boldly go." I've been fighting this illness, the medical establishment, and loss after loss for 10+-years and I am tired.

I think the next phase for me is to start to accept and embrace where I am now. Take the upcoming holiday season, for example. I let go of any Martha Stewart-esque fantasy long ago. This year I have finally found the voice to say that I just can't do it any more. The 'it' being the last few things I still clung too: mostly logistical support for my already over-committed hubbie. In our 23 year partnership I have always joyfully played the role of social secretary and general cheerleader. This year, I've asked my family to coordinate all details with him. This is the final letting go of a role I no longer can play. Sigh.....

Inspiration from the Smallest of People

2009-11-04T11:12:00.000-08:00

My world is fairly ordered and routine. Saturday afternoon my niece and her just turned, three-year old son came to visit and ended up spending the night. My own son is almost 19 and is away at college on the east coast, so sharing our quiet house with this young boy was a real eye opener. Now, if I could just learn to live my own life like he lives his.
joy
He throws himself full throttle into the simpleness of his life. It isn't like he is out running a corporation or balancing a checkbook. Yet, the pure pleasure he receives from driving a miniature bobcat bulldozer up and down my leg and his peals of laughter as he sends it crashing off my hip, show his zest for life. This reminds me that I can experience pleasure in the everyday sameness and minutiae that are hallmarks of a life spent at home. When was the last time I was truly enthralled and finding joy in some simple aspect of my day?
upset
When his 'apple cart' tipped over, everyone knew he was upset. But, the storm of crying and yelling and carrying on was quickly over. He is like a summer day in Oregon, sunny then rain with an occasional thunderstorm. His ability to openly express sadness, anger, and pain and then move on was admirable. I often stew and fuss and carry on over the smallest upsets in life-a rude clerk on the phone; a stubbed toe; or medical bill. Maybe I should be throwing one big tantrum and then let it go.
care
From the day he was born his mom and family have met his every need. You can see how well cared for he is in the confidence he has that loving hands will always be there. He is at the age of starting to separate from his mom and explore outside of the baby comfort zone. I would like to bathe in that same warm sea of confidently knowing that my needs will be met. To turn off the worrying litany that runs like a marquee banner through my mind. In my day to day life I am fortunate to have many people in my world--so many people who love and care for me. It is spiritually that I need to be reminded that God is present and He cares for me more than I can know.
peace
He played hard all afternoon. Skipping his nap due to all the excitement of exploring a new place, new people, a patient dog, and to top it off--his first trick or treating. We went for a short walk and he was entranced with finding out that acorns have hats. Every mushroom we encountered he mashed with glee. He delighted in the giant blow up costumed Winnie the Pooh around the corner. All of this adventure and excitement led to one tired and grumpy boy and one frazzled mom. And then, it got quiet, his eyes drooped, and just like that he was asleep-sitting up and leaning against the couch pillow with his arms crossed behind his head. Looking more like a movie star sunning beside a pool than the cranky little man he was a few moments before. I wish I could sleep like that. Just fold up my troubles and slide into rest.

I remember reading, when my son was a toddler, that a top-notch triathlete tried to follow a 3-yr old throughout the day--walk, bend, sit, sleep at the same pace--and the athlete couldn't do it. My great-nephew loved to climb on my wheelchair and leap off it onto the couch with great abandon. He seemed to effortlessly understand my limitations. I was laying down at one point and he quietly came into the room and stood at the end of my bed. I asked him what he was up to and he held up his arms and said, "I came to kiss you." And he did.
Having my great nephew here certainly stirred things up. Our house seems a little too empty since he left. I hope he and his mom come back soon.

Fear and Losing It at the Library

2009-10-28T14:11:00.000-07:00

My small town has a truly amazing library for a city of its relatively small size. When I lived nearby for about eight years, I was in and out of here all the time. Sitting here this afternoon, killing time until a doctor appointment, I am struck at the parallel between the progression of my illness and the decreasing frequency that I have visited what was once a favorite place.

Today, I came in with my laptop and was playing scrabble against its all knowing electronic brain until a few moments ago. I am sitting on one of the 'comfy' chairs (for whose body?) near an electrical outlet. To get into the chair I parked my wheelchair sideways and slid onto the seat. Now, I have come to realize that I am not sure how I will get back into my chair. The seat cushion is only about 3" higher, but I am extra weak due to my recent flu bug (hopefully, if I'm not home tonight, someone who reads this blog will know where to find me).

The library is a constant reminder of things I can no longer do: reach above the third shelf for books or magazines making it darn near impossible to browse; open the three doors leading in to the building; pick up books without dropping them; or remember the dewey decimal number for the book I am searching for.

I have to head to my appointment soon; the library's bathroom isn't accessible because of a heavy oak door and I don't trust my bladder much longer. This is the first time I have been out on my own for weeks. With the challenges of accessibility to buildings and bathrooms, the mental fogs I can experience, and the waves of fatigue that strike without warning; I rarely leave home alone. Quite the reality for a 44 year old woman.

I used to pass this library on my way to and from work; I used to be able to open doors; I used to know my way around the bus system; I used to know how to navigate without thought. Now, I can become lost walking my dog in my neighborhood. And the result of all this change is, I rarely visit the library.

My Gobsmacked Week

2009-10-24T10:12:00.000-07:00

In the Disney version of Sleeping Beauty, the princess is imprisoned in a castle consumed by a thorny hedge. She sleeps blissfully unaware that her world has become a prison. No matter how diligent I am, my own garden is steadily being overrun with the insidious spread of choking vines. Every inch, every crook and crevice is slowly being invaded by the viny tendrils of multiple sclerosis.

This past week was a series of gobsmacked* times where I had no choice but to confront this damnable illness and how much it impacts my life. When I stay safely in the protective bubble of my house, where everything is carefully thought out to meet my physical needs, I can almost pretend that this limited life of mine is normal. Particularly if I carefully turn the lights off in the room where I store my preMS dreams and desires and accept as satisfactory a life lived in a protective bubble.

Last Saturday should have been a day of fun adventure. My hubbie planned for weeks for a Fall outing on a historic riverboat. He called ahead and was assured that the boat was accessible. In the kind of soaking rain that only a cold fall day in Oregon can produce, we ventured an hour north to the park and made our way to the boat landing. The boat may have been accessible, but the gangplank that descended at a 45 degree angle from the high riverbank down to the river, certainly wasn't. Just like that our fun adventure was over. It isn't logical or correct, but I felt like a dead mouse in a swimming pool. The couple we are with and my husband put on brave faces as we try to come up with another plan. But really, it is my chair, this illness that has ruined our day. And, who I am and MS are so intertwined that I can't untangle them.

Just a few years ago I had finally found my career niche--fascinating work, great coworkers, and a growing sense of place in my professional field. After a year of working while undergoing Novantrone chemo therapy and seeing little therapeutic improvement and then feeling my grip slowly slipping on the complex world of grant development and management, I had to face that I could no longer work. I loved my job and still have intense dreams about it. Just when I think I have moved past mourning for this profound loss, something happens to push me right back into paralyzing sadness. On Tuesday I received emails from two women who I used to work with, one filled with chatty news of cross country travels to conferences and the other on the busy world of planned retirement. While I am thrilled to hear from these friends, their words unintentionally bring me to tears. Days filled with naps, reading, symptom management, medical bills, and peeing the dog in no way measure up to what I have lost.

To make up for the lost boat adventure, the couple we went with invited us to spend this weekend with them at their vacation cabin. Normally, we can't afford weekend getaways, so their invitation was especially welcome. And, what could go wrong, after all I was simply trading one indoor environment for another. Last Sunday night I came down with a stomach virus. After a mostly sleepless night I woke to my hubbie as sick as I was. We settled in for a day of shared misery. By nightfall he was well on his way to recovery while I seemed to just feel worse. By Wednesday, with no relief in sight, we had to consider that a weekend trip was unlikely. Thursday morning, after four days of stomach pain, a low grade fever, and the increasing weakness on my left side, it was abundantly clear that our planned getaway was not going to happen. MS causes everyday illness to hit me twice as hard and exaggerates any of my disease related symptoms.

One of my favorite books is Web of the Chosen by Jack Chalker. In it, a pilot crash lands on an alien planet, at first he is bewildered by the strangeness of his new world. Slowly he is literally transformed into one of the alien inhabitants to the point that what was impossibly foreign becomes all he has ever known. I don't want to lose all I was and the dreams and plans that unfolded from my previous life, but maybe, if it made this MS defined life a little easier to bear, it wouldn't be so bad.

*It means “utterly astonished, astounded”. It’s much stronger than just being surprised; it’s used for something that leaves you speechless, or otherwise stops you dead in your tracks.

I am sick, sick, sick & it isn't MS

2009-10-21T20:48:00.000-07:00

Friends,

I am down with a stomach virus and feeling rather 'icky.' Please keep me in your thoughts and prayers. My hubbie & I are set for a weekend away this Friday--but, unless I am much improved, I won't be going.

I'll post as soon as I can,

Janine

It's o.k., I don't mind, No really...

2009-10-12T06:56:00.000-07:00

Envy is an odd thing to live with and when it dances with Jealousy the music of my life can take a bitter turn. MS chips away at my nervous system and bits of me stop working, become weaker, and, without warning, add another odd symptom to my list of complaints. And then, as in the recent 'loss' of my left little finger, the entire mourning process of MS loss begins again. How can I accommodate this? Is it worth a trip to the neuro? Is it permanent and how pervasive? Most importantly, what will my life be like now with this latest loss. Can I still open the toothpaste tube or hold my hairbrush or zip my jacket. The little finger does much more than I realized. It isn't completely weak--I can move it and at times it is stronger than at others.

So where do E&J fit in to the distracting, discouraging, and insidious weakening of a pinkie? It is like the old groaner, "Doc, will I be able to play the piano? She responds, Yes, if all goes well." You reply, Great, I couldn't before" So one little digit won't cost me the ability to play a 12-string guitar or knit intricate sweaters. The envy and jealousy I feel isn't about a particular ability someone has that I once did; although I would give just about anything to have my career back or glide off on a bicycle or tend a vegetable garden. OK, so maybe there is envy and jealousy here. When I hear someone kavetch about their busy schedule with work and kids and church and and and.... I confess to dancing a few laps around the ballroom with these two emotions.
My experience with these evil twins is subtle and insidious, and most importantly, steps on the path I take to isolation and loneliness. How can 'normal' person understand living life with the relentless assault of MS loss.
As a result I put on my 'happy happy joy' face and tell you it isn't so bad. I focus on the practical losses and tidy up my emotions. MS has its own language and is almost impossible to translate into english. I can show you my droopy finger or draggy left foot or tell you why I use a wheelchair. But, I can never adequately express the deeper emotional impact or the internal world of life the MonSter.
What is a finger worth, I have nine more. No, actually, my pointer finger went south years ago, and my right thumb requires a hard plastic brace to work at all. So, that leaves me with seven, more or less. Will another start to fail today-this minute, or tomorrow? And, what about my toes, my eyes, and on and on. Every inch of me is run by a complex system of nerves and as I understand it, can be affected at any time.
The impossible task is to live with knowing that any and everything could be impacted at any time. And somehow build a life of safety and security on top of this unreliable foundation. For me, the deeper foundation is the surety of God in my life. Without that, I don't know how I would live with the envy for and jealousy of the life I no longer live.

It is a good thing that I know how to Swim

2009-09-30T08:57:00.000-07:00

I am not in the best frame of mind these days. I don't have a specific reason to be blue--nothing extra ordinary has occurred, no major tragedies have befallen, and it is too soon after a gloriously sunny fall weekend to attribute this pervasive sadness to changes in season or weather.

I avoid writing about my depression for several reasons. One, that folks read my blog and feel an overwhelming pressure to call and try to cheer me up or fix me. For me, these writings are a deeply personal, and a strangely public baring of my soul--as if I awoke from one of those public nudity dreams, discovered it was real, and then had to delicately wade through public commentary on my deeply embarrassing public parade. For another; I want to protect those in my life from worrying about me. And, to a lesser extent, to avoid the kind of inane 'cure all' blather that seems to go hand in hand with depression: "you don't have it as bad as so and so," "you have so much to be happy about," "count your blessings," and my personal favorite, "you seem so happy." Medically and spiritually I am well cared for with this challenge. And, I don't particularly like to discuss it.

Depression goes part and parcel with MS. Attributed to both changes in the brain from the illness and the challenges that MS causes in ones life.

So, what do I need? Nothing, really. Just swimming through some deeper darker waters right now. It is a good day to turn off the phone and settle in with a good book.

And a special acknowledgment to my wonderful husband. He would like to wave a magic wand and make me all better. But, in lieu of that, at 6:30 this morning he slipped out of the house and went to the store and bought me some raisin bran. Why? Because I casually mentioned that it sounded good for breakfast and he wanted to do something nice for me. So, thank you, thank you, thank you to my best friend of 23 years who knows how to make me smile down deep in my soul. And who cheerfully goes out on a dark, rainy morning to buy a box of cereal full of those 'evil' raisins that he doesn't eat.

Beauty for Ashes

2009-09-23T12:04:00.000-07:00

The Willamette Valley where I live is gently slipping into Fall with refreshingly cool mornings, warmish afternoons, and long evenings where darkness slowly covers the sky. For the past couple of days a forest fire, that is burning to the south, has left the air smoky and has settled a fine coating of ash on everything.The air is so full that it tastes like a faint memory of a campfire
Sitting and looking out my window the horizon is painted with a fine veil of haze. The sunlight, filtered through the smoke, is sharper and at the same time, somehow easier on the eye. Each morning the sunrise spreads across the horizon in a swath of raspberry and orange sherbet, with a lemony yolk of sun seemingly suspended in the richly colored sky. At nightfall the sky itself is painted in shades of creamsicles and lemon gumdrops swirled together with the coming darkness.

In the old testament book of Isaiah, chapter 61, has these profound words:

. . .to bestow on them a crown of beauty
instead of ashes

The fire that is raging nearby causes devastation to the forest, and danger for the folks fighting it. The smog has wrapped itself into the nooks and crannies of the landscape. The fire, too far away to be felt or seen, has provided a canvas for unexpected beauty.

I spent this past weekend with a couple of gal friends who I have known for a long time--one over 30 years and the other around 20. This next week I am spending with my hubbie to celebrate his 50th birthday. My son seems happy and settled at his college on the East coast. (he is where he should be, but oh, how I can miss him). The rich blessing of friends and family is my own unexpected beauty in a life that can seem insurmountably hard. I hold on, when all seems dark and dismal, waiting for the sun to rise and paint my sky in a rich palette of purples. Somehow, knowing that this beauty is just around the corner, is enough.

Living and Surviving

2009-09-18T10:38:00.000-07:00

It is one of my bad days--the nerve pain in my arms is overwhelming and yet, I am trying to live a so called normal life.

These lyrics from "Set Me Free" by Casting Crowns speaks to me this morning and says better than I ever could the struggle to live in spite of this damnable disease.

It hasn't always been this way
I remember brighter days
Before the dark ones came
Stole my mind
Wrapped my soul in chains

Now I live among the dead
Fighting voices in my head
Hoping someone hears me crying in the night
And carries me away

Set me free of the chains holding me
Is anybody out there hearing me?
Set me free

Morning breaks another day
Finds me crying in the rain
All alone with my demons I am
Who is this man that comes my way?
The dark ones shriek
They scream His name
Is this the One they say will set the captives free?
Jesus, rescue me

As the God man passes by
He looks straight through my eyes
And darkness cannot hide

Do you want to be free?
Lift your chains
I hold the key
All power on Heav'n and Earth belong to me

You are free
You are free
You are free

Getting a 'Handle' on life

2009-09-11T14:20:00.000-07:00

I am waging war against my hands and arms. I noticed, this past Tuesday morning, that something was odd about my left hand, when I typed Hppy Birthdy nn-my left hand little finger wasn't making the connection from brain to keyboard. I don't miss the Q too much, but I need tab and A and shift. Apparently, my little finger is on an MS sponsored vacation.

I've had problems with my arms—almost from the beginning nine years ago. My left pointer finger started to lag behind when I typed or tried to pick up little things like paperclips and pencils. I have a cyst on the back of my hand, so naturally I assumed it was affecting my finger. The first inkling I had that I might have a neurological problem came from the insightful hand specialst who told me that the cyst is asymptomatic and my draggy finger is a nerve system issue.

This news was quite the AHA moment for me. Many little things came together and made sense: the tripping and falling; becoming so exhausted on walks that I needed rescue; the lack of 'kick' in my left leg. We, my then young son, hubbie, and I had moved back to my home town and I started a new job. Previously I had worked two jobs, had a large garden, chased a toddler, and managed our household. Now, I could barely make it through my one sit-down job before collapsing on the sofa.

So, over the past years, starting with my left side, MS has slowly chipped away at the functionality of my fingers, hands, wrists, and shoulder. My left shoulder and scapula hang 4" lower than the right; only occasionally can I lift my left arm; both wrists hang uselessly when I take off my braces; last spring the right thumb gave way, and now my right arm drags. If I could find Frankenstein's mad doctor, he could probably patch the two arms together to form most of one working limb.

It is impossible to list all of the things that slowly losing my arms and hands costs me. From simple tasks like brushing my teeth (I still haven't quite figured that out) to hand embroidery and gardening and cooking and and and..........

The latest uninvited guess to the MS party is neuralgic arm pain. From mid bicep to fingertip I experience constant pain. I call it debutante pain after the long white gloves the debs wore. It feels as if my arms are being squeezed in a custom poured vise that perfectly fits the contours of my arms and fingers so that every square inch experiences the relentless squeezing. The weirdest symptom are the lumps that form in my muscles that can be massaged away only to 'pop up' in another part of my arm. Mixed in are sharp stabbing pains that strike out of nowhere and can bring me out of a deep sleep. Intermittent stabbing electrical pain has to be one of the worst symptoms of MS.

Right at this moment it isn't clear who is 'winning' in this war. The past few days the pain and spasming has escalated to a point that I can barely function. I am irritable, sleep deprived, and just sick sick sick of MS. What I would give to hop on a bike, peddle along the river, and revel in the late fall sunshine. Instead I am inside my quiet house trying to convince myself that I can handle this without banging my head against the wall.

Inspiring words.....

2009-09-08T08:50:00.000-07:00

Although the world is full of suffering, it is full also of the overcoming of it.

Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therein to be content

No pessimist ever discovered the secret of the stars or sailed an uncharted land, or opened a new doorway for the human spirit.

Helen Keller

Fall in Oregon is my favorite season-not too hot or too cold, as Goldilocks famously said, 'Just Right.' I sit, curled up in my comfy bed, looking up at blue sky the color of joy and try to swim my way through the murky waters of illness and depression.
It would be great to sit down with Ms. Keller and explore the challenge of living purposefully and authentically within the boundaries of blindness or, in my case, MS. I assume that my 'shiny happy people,' (REM lyric) face is required for entry into the world--no matter what my circumstances or the cost of hiding. Not, to the outside world, necessarily a bad way to be. It is as if I am coated with a mirrored surface that reflects one image to the world and another inward.
Finding an authentic balance between the extremes of 'I am perfectly fine' with 'I am wallowing in pig muck,' isn't easy or natural. I don't want to the sad sack all the time or the chubby barbie doll clown on wheels.
I strive to be brave, wise, real, and noble. But, does that mean I can't be real? Still figuring this out. For now, I will look to words of encouragement from Helen, or Milton, and scripture.

Oh yes, you shaped me first inside, then out;
you formed me in my mother's womb.
I thank you, High God—you're breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something. (Psalm139)

Hearts, Moons, Stars, and Clovers

2009-09-01T07:26:00.000-07:00

I woke up this morning and realized something was subtly different. Those who've known me any length of time, know that saying I am not a morning person is an understatement of epic proportions. (That I am married to someone who can whistle a merry tune at 5am is one of the great ironies of my life).

Usually waking up feels like being drug from the bottom of a well, through 6ft of murky cold water, and emerging blinking and unsure of the wheres, whys, and hows, of my present state of being. When MS is factored in, I also go through a checklist of aches, pains, symptoms, weakness, and dampness. A few second summary that confirms I still have this damnable disease and a weather forecast for the coming day--yup, right leg works (shake); still can breathe (inhale); arms are aching (!) and I am as exhausted as when I got in bed the night before.

These past weeks were rough ones. With each day bringing elevated pain levels, lack of sleep, and an allover heightening of my symptoms that I like to directly contributed to the summer heat. And is just as likely linked to the vagaries of life with MS. Lately, these early morning assessments only served to remind me that the 'same old, same old,' was the entree de jour.

I started on a new med on Saturday that was supposed to have two affects on me; reduce nerve pain and make me sleepy. Imagine my surprise and dismay when on both Saturday and Sunday nights I found myself itchingly, achingly awake for hours--my skin and nerves seeming to jingle with their own source of electricity. I anticipated the start of actually sleeping well and instead found myself doing a frenetic stationary imitation of the energizer bunny. This shaky, jittery feeling chased me into the day causing my skin to seem like its own life force.

As seems usual for me I apparently fall into a group of about 2% who take this med, and instead of feeling the blissful pull of sleep end up on a caffeiney, jet laggy buzz that is quite unpleasant.

So last night I skipped the new med, took a couple of Tylenol PM, and went to bed extra early. Due to two nights of sleeplessness and the resulting exhaustion I slept better that I can remember. I am not even sure if I woke up once. This is unheard of for me. I spend more than my share of hours in the lonely parts of the night.

So, to this morning-wake up and don't know the time and am surprised to discover it seems I slept all night. Next, the check list-leg works, breathing works, arms aching-but wait right there my pain level is down and I actually seem to have energy. The bed isn't a lead weight drawing me back into the oblivion of sleep. It feels like I opened the curtains to find the sun breaking over the horizon instead of the forcasted rain, sleet and snow.

I imagine this is what Heaven will be like; fall asleep with an expectation of the same old drudgery and wake up to an entirely different manuscript. I have a long running conversation with God where I see my self with cymbals and bells on my toes serving as a dancing girl at the gates of Heaven. "Take theses shackles off my feet so I can dance." Listen

I can't say that I am currently dancing the Charlston while juggling little white poodles. Or that feeling better will last for an hour, a day, or less but I do know I am going to enjoy it while this little rainbow of 'betterness' that greeted me this morning.

Update on an improving Wednesday Morning

2009-08-19T09:26:00.000-07:00

Don't have it in me for much, but knowing that many folks are keeping an eye on me, thought I should do a quick update on me and my nasty head pain:

To Whit

I had two nerve block injections Tuesday morning--one in the back of my head and one in my neck. Ouch
I am slowly feeling relief, in that, so far today I haven't actively considered banging my head against the wall .
I only remember waking up twice last night-so have had a little more sleep.
My sound sensitivity is ratcheted back a few notches and I have my blinds open a crack, cause my eyes aren't as squeamish about light.

This morning while reading James 5 I read verses 9 and 10, they reminded me to hang in there.

Take the old prophets as your mentors. They put up with anything, went through everything, and never once quit, all the time honoring God. What a gift life is to those who stay the course! You've heard, of course, of Job's staying power, and you know how God brought it all together for him at the end. That's because God cares, cares right down to the last detail.

Ranting on a Bad Monday Morning

2009-08-17T09:30:00.000-07:00

Another Reason to Detest our Medical System

I am in pain-severe, can't sleep, can't function kind of pain, all weekend I have hung in there waiting for my pain doctor's office to open so I could be helped.

You see, I have occipital neuralgia, which runs from the back to the front of the right side of my head. It is the only MS pain I have experienced that I can have immediate relief from. The treatment is a cortizone nerve block shot into the base of the back of my head-almost worse than the pain, but worth it if this insane pain can be stopped. About two months ago, when this started, I saw my pain doc and he gave me the shot and whammo--pain almost completely gone. He told me it was sometimes a temporary fix and if the pain came back to call their office and I could have another shot (no big deal, right?)

Wrong.

So, on Saturday the pain in my head came soaring back and all weekend I counted down the hours until 8am on Monday. At 8:05 I left a message with his medical assistant. At 9am a scheduler called back and offered me an appointment 3-weeks from now. I explained my situation in more detail--told her that in the years I've been a patient I have never asked for immediate help. She informed me that they weren't an 'urgent response' practice and that was the best she could do was Aug. 28th. Finally, she begrudgingly agreed to let me speak to the assistant. So, the assistant calls me and informs me again that they aren't set up to respond to emergency increases in pain (yes, you read that correctly) but she can let me see the nurse practitioner -- tomorrow.

I mention that I had a bad reaction to the first shot and that Dr. Kosek had to sit with me and give me oxygen. She says she sees this in my chart notes---but the earliest I could see him is sometime in the distant future. I ask her about the next Friday or 3-week openings--these are also with the nurse practitioner.

Simply put, it is seemingly impossible for me to see the doctor. This type of shot isn't available at my general practitioner or urgent care clinics or ERs. Why didn't my doctor explain that it isn't his practice's habit to respond to urgent pain needs. I wouldn't have spent the last 48 hours waiting for his doors to open.

Good to know, but no help to me today. I hope that tomorrow--24 more hours of intense pain from now--the NP will be able to help me. Not sure what I am going to do next time.

all the world's a stage..........

2009-08-13T14:47:00.000-07:00

When I was a girl, long before the zoo figured out how to properly house their residents, the exhibit for bears sat prominently near the entrance. The enclosure was made of barren concrete and the caged bear paced endlessly. Back and forth, seeming to stare longingly or hungrily at the crowds gathered outside the bars. The bear's thoughts were a mystery to the visitors and each one saw the bear in a different light. Something about the restless pacing made me achingly sad. Others may have seen only a fierce animal properly contained or maybe they gave no thought at all to the endless movement of the bear on his concrete stage.

An inherent aloneness exists in difference and 'other.' I learned this all too well nine years ago when I started using an electric wheelchair. I might as well have a blinking neon arrow with 'look at the gimp' flashing over my head, following me wherever I go. When I was a 'ped' (as in pedestrian) I was unaware of the luxury of blending in to the world of legs. If someone glanced at me on campus or the bus I was just another face carried along by feet. Once the wheelchair became a part of me I entered into the intense scrutiny of difference. People stare open mouthed as I go by.

My job is apparently to assume their good intentions, politely tolerate their probing questions, their inquisitive children, and their intrusions and interruptions. I often enjoy hanging out at my neighborhood coffee shop. I sit in one of their comfy chairs, reading and getting up occasionally to add more cream to my coffee, give in to the temptation of a brownie, or use the little girl's room. Ordinary, normal behaviour, not worth noticing, unless you use a wheelchair. Just the other day two women and a little girl were sitting across the room from me. Every time I tranferred and drove across the room, the girl would point and yell, "look, look at the lady." Her mother hurriedly shushed her and then on my way back to the chair, the girl did it again and then again. I did my best to ignore her, but it is unsettling at best and down right annoying to be under such intrusive scrutiny. Finally, the mother whispered to the girl and sent her over to talk to me. Unbidden and, churlishly, I will say unwelcome, the girl came over and began to ask questions, 'what is wrong with you?' and 'why do you sit in that?' I pushed aside my annoyance and dealt pleasantly with the girl, but really, I am just a person who happens to use wheels instead of feet.

MS is not easily defined. I know a lady who has had it for over 20 years and she has no outward signs. On the other extreme my trembling hands, jerking arms, braces, dark glasses not to mention the chair instantly mark me as afflicted. You know there is something wrong with me, but what exactly? Curiousity is difficult to contain. Then, when you get to know me better, enter into my 'village' and interact with me weekly at church or in the neighborhood, you make up your own story based on physical clues. She must be paralyzed, but quad or para? Why does she have those braces on her arms? What should I say to her?

Friends and family do their best to 'read' the clues; a yawn, or a grimace, or my answers to their questions and create their own story about the state of my MS. When they ask how I am; I simply don't know how to answer. Are they asking how I am physically compared to five minutes ago, last year, or back when I only dealt with the ordinariness of the every day. Do they want a detailed run down or will their eyes glaze over. Do they recognize that certain symptoms are my constant companions.

Recently I tried to use statistics to track 'how I am' in an effort to better answer the question. My husband is a statistician and he helped me write formulas and enter data into a spreadsheet. My plan was to assign, on a one to ten scale, a daily record of my fatigue, pain, weakness, and other symptoms. Quickly our efforts bogged down and eventually came to a stand still when I realized my base line, that is my -0- is impossible to define. Is -0- me on my best day right now, some point in my past, or is -0- how a healthy body should work. It is like asking a woman to define pain before and after childbirth. She might have thought breaking her arm was the worst pain ever until that 10lb baby makes an entrance. From that time on she has to quantify pain in a entirely new way.

This public isolation, the reality of living with a disease that is on prominent display, creates a life that is both open to endless scrutiny and shrouded by an impenetrable fog. As I write this the pain in my arms is soaring and I find an occasional tear trickling down my face. But, if you looked at me with my headphones, tucked in bed, you would never know. And, if I tried to explain, do I have the words for you to truly understand?

Flat and Opaque.....

2009-08-12T13:47:00.000-07:00

Having come through a rough patch and still trudging along on what is a seemingly endless path of bad and slightly better MS days I am feeling rather flat. As I heard in the first Lord of the Rings movie recently, 'like too little butter spread over too much bread."
I am never quite sure how to get a handle on my mood when I am feeling this ground down. I am like a sailing ship caught in the doldrums. It isn't a matter of claiming a better attitude or pulling myself up by my own bootstraps.Or sleeping more or flipping some magical switch. I simply don't have the physical reserves or the mental energy to do much of anything. The odd thing is I am not bored, just flat.
I love words and the power of their meaning-to that end I am one of those odd people who reads the dictionary for enjoyment. I find them particularly useful for putting into word the most difficult of concepts.
In the Oxford Dictionary the definition of doldrums is:
1 a state of stagnation or depression. 2 a region of the Atlantic Ocean with calms, sudden storms, and light unpredictable winds.
And Flat as an adjective is:
1 having a level and even surface. 2 not sloping. 3 with a level surface and little height or depth: a flat cap. 4 (of shoes) without high heels. 5 lacking vitality or interest: a flat voice. 6 (of a sparkling drink) having lost its effervescence. 7 (of something kept inflated) having lost some or all of its air. 8 Brit. (of a battery) having exhausted its charge. 9 (of a fee, charge, or price) unvarying; fixed. (of a negative statement) definite and firm: a flat denial. (of musical sound) below true or normal pitch.
The words in bold readily paint a picture of how my world feels these days.

Homage to Star Trek and Carpeting

2009-08-06T08:27:00.000-07:00

I am often asked how I stay a person of faith given the difficult path my life has taken. As if calling myself a Christian guarantees a Willy Wonka golden ticket into a magical life of white picket fences, mini vans, and Partridge family living. Were this true; folks would be lining up at the door of every church in the nation. These lyrics (from I Believe, by Barlow Girl) speak to the profound challenge of having faith through all of life:

I believe in the sun even when it's not shining
I believe in love even when I don't feel it
And I believe in God even when He is silent
And I, I believe

(song) (complete lyrics)

Having faith is what carries me through weeks like this past one where I suddenly lost my voice. I cling to a silver thread that winds its way through my every day and on into eternity. Humans see suffering through the lens of their own life time-my years, my house, my job, my broken heart.
My own faith is deeply influenced by too many hours of watching Star Trek, work with me here, where time is fluid and the actions of one person resonate throughout the 'space time continuum' and impact the course of human existence for generations. If I see my own life as part of an unimaginably intricate and immense carpet being woven by a master hand--what I experience in my own lifetime becomes part of something much greater and grander. I may never see how God uses the circumstances of my life, but I do know that if I weren't here that priceless carpet would have a small flaw. The reverberations of my life will carry forward in ways I will never know.
It is never my intention to preach or judge. My words here are simply to answer the question of why I believe, even when He is silent.

Facing the Fear of Silence

2009-07-30T13:49:00.000-07:00

I wish I could say that I had had an intense, transforming spiritual awakening over these past voiceless days: like Moses & the tablets or Skywalker with Yoda. That speechlessness created a new state of awareness or lifted me up to a higher plane or better state of being. MS may be character shaping; but so far it hasn't turned me into a saint.
It happened suddenly--I was sitting with friends in church--happily singing praise songs to God in my decidedly unpraiseworthy voice when my throat constricted--at first I gasped for air and then coughed and choked. This passed, I drank a sip of water and started to sing again---instantly the same thing happened. I gave up on singing and sat for a few minutes. Everyone around me, my church family who keep a careful watch, were aware that I had two coughing/choking fits. But now, in the middle of service, wasn't the time for me to panic. I could still breath--I just couldn't seem to talk.
Now, four days later, the constriction seems to have eased up a bit. I can whisper in chunks of words. What I hope is a first step towards swallowing, talking, and singing again. I was diagnosed with vocal chord (laryngeal) spasms about 5 years ago The doctor said there was no known cure and I needed to be aware that my throat could suddenly close up so that I couldn't breathe. This tidbit of news followed after me like a shadow from the knife edge of a guillitine blade. I have little episodes every now and then where I cough so hard while choking that I pee my pants. I even throw up when it is intense. But, Sunday's onset brought a completely new reality into my life.
For those of you who know me, my love of talking is central to who I am. How do you boss your son around, or answer the phone, or yell at the dog, or chat with a girlfirend when your vocal chords rebel at the slightest whisper. My son and the dog were probably greatly relieved--for me, my already small enclave on the Lost Island of Secondary Progressive MS shrank noticeably. At one time I managed a research center with over 50 people in my immediate area and hundreds more across the campus as well as family, friends, and the people I chatted with on the bus, at the beauty parlor, and around town. Social interaction gave meaning to my life. When this illness finally eroded my physical abilities to the point that I had to give up the amazing job, active volunteering, driving, and bopping around town; my world reduced to the four walls of my mobile home.
I am learning, the process of acceptance is endless, to find purpose and meaning on this much smaller stage. This blog, the phone, and visitors keep me sane. With the sudden impact of a sonic boom, I lost my voice. How will I eat the sour milk that was poured on my raisin bran. With hands that don't work well, legs that are weak, and deep fatigue--this cloaking silence feels like too much.
Thursday comes with a whisper. I can swallow my pills without chopping or crushing them first. The silence is no where near over-I can only whisper a little and, without warning, my throat will close up and cut off my words and send me into another coughing/choking bender.
The insidious fear monger murmuring in the back of my mind that I might never talk again, I might never share my off-key voice with God, I might never swallow food without a thought. So many unknowns.

Can I Stand One More Thing

2009-07-26T13:59:00.000-07:00

I play a mental game, could I live with this....., then insert one of the less pleasant symptoms of MS. As I steadily inch downhill, everyday is spent in the unpredictable amusement park of multiple sclerosis. I am like the person staring at the Matterhorn Ride and trembling at the thought of climbing on that little car. This morning, it seems that I am forced into riding along--whether I wanted to or not.
The slow, subtle decline in percentage increments such as the diminishing sensitivity in the bottom of my left foot, is easy to ignore. Much like termites--MS nibbles away, behind the scenes, and I don't see the damage until the floor falls into the basement.
I have laryngeal spasm, that causes me to cough, choke, and drool (Oh, Joy). The severity comes and goes, but mostly I am able to ignore it. Everyone coughs, chokes, and (admit it) drools on occasion. Today is a different story--whenever I talk or swallow an intense fit of coughing follows. My throat feels tight and closed off. And, to add to the indignity, my weak bladder gives out and I pee. Also, my upper torso feels like it is slowly being squeezed in a vise. (apparently, this is known as the MS Hug). I wonder if I could live like this, silence, coughing, choking, peeing and being hugged by Big Foot. Simply put, this sucks!
What to do--should I go to the ER. What if my throat completely closes up? Doctors don't seem capable of helping me. A pulmonologist told me this isn't treatable, but then, nothing with MS is. Alleviated maybe, but not cured. A visit to the ER only results in more medical bills and a reminder that my symptoms are mostly untreatable.
I've read that Botox injections to the affected parts of my throat can help. First, of course would be expensive, icky tests like Barium Swallow, and Swallowing studies--then, if the doctors see anything, the Botox is inserted into my larnyx directly through the front of my neck. And, it isn't considering very effective. Sometimes choice in MS is no choice at all.
A friend said that even when you find yourself standing in the ashes, God is there. I cling to that on these bad days. It is easy to be a Christian on the day you win the lottery, but immeasurably harder when the losses pile up. I have on my sound cancelling headphones and am listening to Praise music. Right now, that is all I can do while I wait and see how bad these symptoms are going to become.

How do you Plan for Moments of Whimsy

2009-07-24T09:34:00.000-07:00

So, it is a beautiful cool morning with the sun peaking over the mountains. I went outside to take a gander at my flowers and move the sprinkler. It was so lovely that before I knew it I was a pulling a few weeds from the soaked earth of the bed that was just watered. Usually I am not strong enough to pull them, but with the soil saturated, quite a few came up easily. My garden beds are lined with rounded wooden edges and the lawn grows right up against them.

Without thought I moved my wheelchair's controller and discovered I was stuck. No problem-this happens. I shifted into the high torque gear and tried to move. Nothing, but the whirring of wheels. Looking down I discovered that my right front wheel had driven over the wooden edge and was now buried up to the frame of the chair and turned at right angle to the barrier. To add to my predicament the grass was wet and my strong back wheels were spinning uselessly on the slick surface. Now I am seriously stuck.

No problem, my son is in the house and my neighbors are usually around. I reached for the cell phone to call him, after all, I always carry it in my wheelchair's pocket. No Phone. OK, neighbors then. I scan down either side of the street. No one is out and about. I know it is futile to keep trying to rock myself free--a 250 pound wheel chair with one wheel buried in the mud, one slightly in the air, and the other two churning on wet grass all being weighted down by my rubenesque frame aren't going anywhere under their own power. What to do.

So, I sat there for the next 10 minutes, but it felt like an hour. One can't crawl or scoot with only one working limb. How long before my 18-yr old son, who when I last saw him was settled in his room, playing his favorite video game, talking to his girlfriend on the phone, and blasting music, would notice I was missing?
Finally, I saw a car driving slowly down the street. I waved frantically and they stopped. Thankfully, it was a nice couple from around the neighborhood; not a scary character from Deliverance. The man knocked on my front door-no response from son. Then, they tried unsuccessfully to release me. They offered to drive home and call my husband at work. It suddenly occurred to me that my son's bedroom could be reached. Success, my son came out, lifted me upright from the chair, they pulled my chair out of the mud, and I was free.

Such a relief. And a scare. And a reminder of how vulnerable I am when I am out and about. I can't pull doors open, as the recent 20 minutes I spent in the Target restroom shows. With my cognitive 'hiccups' I can get lost walking the dog in my own neighborhood. With an unpredictable bladder and colon, I have to overcome inaccessible bathrooms. I no longer ride the city bus or 'walk' to the neighborhood coffee shop. More obstacles exist; from my MS symptoms to physical barriers, than I any longer have the strength to overcome.

This morning's scare is a reminder of how quickly I can be in trouble. The shoulds are running through my brain; I should have had my phone, I should have told my son I was going outside, I should have known better than to try to pull weeds or drive on wet grass. But, I was only going out to move a sprinkler a few feet and didn't expect the lure of flowers, freshly watered in the early morning morning sun, and the delight of discovering that a few weeds were loose enough to pull.

All is well now--even though my arms will hurt more today and my wheels are caked with mud. Nowadays, I guess I have to plan for everything--even to be spontaneous.

What do Cauliflower & Gum Have in Common?

2009-07-20T13:11:00.000-07:00

or Someone Left My Brain Out in the Sun & it Melted

This won't be a long post, cause I just don't have it in me. I confess, I did too much and now I am paying for it. My brain feels like a head of cauliflower left in the steamer too long and my body feels like it is a wad of gum, left on the baking sidewalk and slowly melting into a pool of goo. I dislike summer--it has come to that. Outside my artificially cooled island, beckons the sun, blue skies, trips to the park or grocery store--all of the living that happens in Oregon during these few weeks of summer. I miss swimming, and gardening, and biking.

With MS, heat is a strict task master. The warmer my body temp the weaker I become and I don't have any way to predict or control to what extent I will be affected. Today I can transfer to the toilet, so far, but will my right leg give out the next time? My left leg gave up long ago. Heat also causes mental confusion. This morning my son took the lead on our weekly grocery store trip and when we got to the car to load groceries he asked me for the keys. I honestly had no idea what he was asking me for--my mind was a complete blank. Clue in brain-we are by the car, it has doors, they need to be unlocked, and I always carry the keys. But nothing, not one sliver of a clue to what he was saying. I just sat there. It is so utterly frustrating. Finally he reached into my bag and grabbed them. Then I got it--keys, car, duh! The off button gets switched and I can't turn it back on.

In many ways, on these hot summer days, my home becomes a safety zone and a prison. I didn't fully understand how much heat affected me until I moved into central air conditioning two years ago. Looking back, pre AC, I usually had a major exacerbation every summer-most of the months of July and August. Now, if I stay indoors the overheating cycle only happens when I give in to the lure of the summer sun or to living my life (groceries, church, etc.).

Summer, bah humbug--give me rain and cool grey skies anytime!

One of those Clarifying Moments

2009-07-11T18:59:00.000-07:00

or, always heed wise council

I live in the world of now-right in my face, every day. It is easy to spend my time looking back at was or ahead at what might have been. Things that I enjoyed; cooking, dancing, hiking or that I once did with ease that now are neglected from the stack of unwashed dishes to the unfinished craft project or things I thought would always be my future; a Master's Degree, summers in my vegetable garden, adventure travel.
So, last week on one of my dark days when the pain was winning, my insurance denied me visits with my counselor (these posts may just get nuttier now that I won't have him around to keep me sane), and I was just deeply bored with day after day at home; my dad stopped by for one of his regular 'housecalls.' I was too sick to be out of bed, so he had to climb over magazines and books on the floor, a big pile of dirty laundry, and other assorted junk so he could sit and visit with me. Several times I apologized for the mess and finally he looked at me and said;

"Worry about what's in here (pointing at his chest), not what is out here (pointing at my messy room)."

Such wise words--they brought a quick halt to my internal tape of guilt, embarrassment, and regret over how my house could be or should be. My dad was here to spend time with his daughter--not judge the state of my room or my perceived 'failings.' And, wasting time over some sort of never ending tape loop of old movies and future musing is simply that, a waste of my precious time.
The eleventh chapter of Hebrews is the 'live by faith' chapter, as testified to by a listing of famous folks from the Old Testament. I've heard sermons on this famous chapter over the years that focused on the great things each of these people did for God. Thinking about it now, I realize that these talks reflect a philosophy of measuring ones life by what one accomplishes. This past week the thirteenth verse popped out at me, saying that none of the people were given what they were promised by God-the measure of their lives came from eternity. In a sense the message in Hebrews 11:13 is the same as what my Dad told me--the internal world instead of the external--not what I have done, should do, might do, or want to do--How am I living my life today-do I have joy-do I have faith-do I focus on the many wonderful things that are in my life today and eternally or do I waste time living with bitterness and regret.
Wise words from my Dad and my favorite book--now it is up to me to live them.

Random Thoughts on a Tuesday Morning

2009-07-07T08:21:00.000-07:00

My Brain is a Word Salad
Too many thoughts bouncing around in my brain to settle on one to write about. Not sure if it is the affect on my brain of the flare up I am dealing with or just that many small thoughts have taken up residence in my head.
Update on last post: My trip north in our short-lived heat wave was a success from an MS perspective. By that, I mean, the joy of watching a dear friend confirmed as a circuit court judge outweighs the challenge of the past few days. It would be fabulous if a direct line of sight could be drawn between overdoing it last Thursday with the following uptick in my symptoms. But, as anyone who has or lives with someone who has MS, figuring out the whys and wherefores of what makes MS better or worse is a mystery. I just know that this morning my lungs are congested because I am slumping worse than usual to the left--this compresses my lung and makes it slightly more difficult to breath--and I forgot to raise the head of my bed a little higher last night.
Pain Sucks: When I was a young woman I had migraines that I thought were the worst pain I could tolerate. I was wrong. I found that childbirth is no picnic, but results in the present of a beautiful new life. From what I can tell, persistent nerve pain has no 'up side.' I wish humans were born with a box of spare parts; so I could unfasten my arms and set them aside for a few days and wear my 'stunt' pain free set. I guess it is a good thing God didn't put me in charge of the creation of humans.
Alone vs. Lonely: In Sundays paper local columnist Dorcas Smucker, who is a farmer, wife, and mother of a big family, wrote about having the house to herself for a weekend. Her insights struck a chord with me because they reflect my own experience so well. {Entire column}

"The house seemed dim and huge. Everything from furniture to a left-behind air mattress seemed still and unmoving. How many closed doors did this house have? More than usual, especially upstairs, surrounding the silent hallway. I heard noises I never notice — the clock ticking, the wind, the dog brushing past on the porch, the refrigerator humming."

Later, she talked about what she learned about being alone.

I have had many friends who lived alone, and one thing I have found hard to understand, especially in the elderly, is their hunger for time with others, their desperate compulsion to talk. Now, after lighting up at the sight of my son after only four hours alone, I had a new understanding of my friends’ need to talk with a visible face.Too much solitude brings loneliness, but just enough brings the gift of rest. I was free to read, to pray, to ponder without interruption.

I often hunger for human contact, human touch and then find that my light and sound sensitivity combined with the intense nerve pain make it almost impossible for me to be around people. I will haul myself out of my bedroom, lure the teenager from his lair, grab the hubbie and curl up on the couch for a movie and in no time the National MS Warning Center that is my brain sends out hurricane warnings. The sound of keys tapping on my son's laptop, the high pitch of the TV, the dining room light, all start to swirl in my brain until I feel the top of my head start to come off. The careful walls I've built to buffer the pain begin to crumble and suddenly I rush for the sheltering cove of solitude and silence. For me, aloneness brings loneliness, but my symptoms make being around living beings just about impossible. I don't know what the answer is.

Children, Children, Children: I am so grateful for the children who grace my life.

a new baby girl born to dear friends on 1 July. Holding her was the best feeling ever!
my 5-yr old friend and lunch at the park. She's been my buddy since the day she was born and knows me only with a wheelchair, so is completely at ease. Climbing into my lap for snuggles and a 'ride.' She is balm for my soul.
my 18 yr old son. He is home from college for the briefest of weeks. It is bittersweet to see the independent young man he has grown into. I am both proud of who he is becoming and missing the little boy who, in what seems like yesterday, climbed into my bed to eat chocolate cream pie for breakfast.
my nephew and my neice's son. Busy little boys who magically grow and change every time I am lucky enough to see them.

That is all for now. I am going back to my quiet nest with my snoring dog at my side.

And, a nod to a fellow blogger who introduced me to, "Word Salad"

The lava is falling, The lava is falling

2009-07-02T07:49:00.000-07:00

I bounce from high to low so quickly I can almost feel the pull of gravity like a bungee chord keeping me tethered to the ground and not quite able to reach the clouds. High-witnessing a friend's career-capping appointment; Low- the Oregon summer heat arrived and my body is protesting. I am sitting here wondering at the 'price' MS will charge my body for the afternoon trip to see my friend sworn in. Four hours sitting in a car, a reception in the 90+ degree heat--will the cost be two days in bed, increased weakness, or a full MS meltdown? And yet, when a friend of 20+ years achieves such an honor I am willing, no, more like unwilling to allow MS to dictate my life and choices.
The decision to do a thing, no matter the toll on my body, is relatively easy for the biggies; births, deaths, celebrations, and milestones. I can shine it on and be my funny, charming self while disregarding the 'she looks so good,' rhetoric that follows me like a trail of rapidly popping bubbles. If these same well-meaning folks could watch a trailer of what my next hours or days will probably be like--they would know that MS is a relentless task master and a few hours of shiny, happy Janine is just a cover for the reality of this damnable illness.
It's funny, but I think my hubbie pays the highest price for my forays. He is the one who will clean up the mess when my weak hand drops the bottle of salad dressing on the floor. He is the one who brushes my teeth and applies deodorant. He is the one who is awakened during the night when my legs cramp and twitch. And, he knows, better than anyone, the impact that 'real life' takes on my body.
All of this bounces around in my head; the pull between wanting, for a few hours, to be like everyone else and without a care, attend this happy, momentous event, weighted against the reality of life in a secondary, progressive MS body. I feel fierce anger that I can't control or flip a switch and make this all go away-just be a woman in a pretty dress attending a party. No amount of rest or strategic planning will satiate the MonSter.
Who knows, maybe today will be different, or at least better, than history clearly indicates. Maybe I will come up with the right formula of rest stops, air conditioning, and naps so that by this evening I am not in full melt down. I understand why virgins were sacrificed to volcanoes--I would do almost anything to stop the flow and save the village.

Life in Area 51

2009-06-23T08:34:00.000-07:00

MS is isolating-nerve pain doesn't turn your skin neon orange, weak limbs don't glow in the dark, and eye and ear neuropathy don't advertise with a golden halo. I admit, it might be nice if what I am experiencing made itself known without going through the laundry list of each symptom when I am asked the simple question, "How are you today." At what point in responding to this question authentically (i.e. the nerve pain in my arms is severe, but the occipital neuralgia seems a little better, while the sound sensitivity is making me think about how I can quiet the darn birds outside my window, and on and on) does the asker' s eyes start to glaze over. I used to just say, 'fine,' and have moved on to the slightly more honest, "hanging in there," but in reality, I haven't the words to explain what living with the MonSter is like. People would truly look at me like a freak if I told them my body was taken over by an alien presence eight years ago and I fight every day to free myself from alien control (this could be a much more entertaining answer, I will have to consider it.
The visible side of my illness is the pale purple braces sprinkled with a butterfly pattern that I wear on my forearms and my legs--known in the biz as ankle/foot orthotics (AFOs) and FAOs (forearm)--not to mention the tilt wheelchair with its multiple wheels, loud gear shifts, and generally fascinating gizmos. To add to this, I often wear wrap around dark sunglasses due to light sensitivity (that is a nice way of describing the stabbing pain and sea sicky sensation that comes from sunshine, flourescent lights, and light in general). Quite the picture--I recently saw a t-shirt that said, Keep Staring at me, I Might Do a Trick. I want to put this on a placard and attach it to my chair.
A while back, at the local Target, with braces+chair+ dark glasses, Oh My!, two women came walking towards me, one said loudly--"Get out of the way, that lady is blind!" How hilarious--I would have some mad wheelchair skills if I could maneuver through a crowded store while blind and without some type of guide. The two women leapt out of my way safely, I am happy to report, although it was very tempting to veer towards them and see how fast they could move.
A tremendous pull exists between seeking acknowledgment of my illness and the desire to move through the world like a 'regular' person. Do I want to be the poster child for disability and illness on my next trip to the market, the park, or a party? Some questions from the public seem pushy and rude, while in others I detect a more sympathetic motive. Whatever their intent, I often feel like a giant spotlight follows me around, "everyone look at the gimp in the chair, what will she do next?" If someone sees me struggling, should they ignore it, offer to help, smile sympathetically, or ask probing questions?
This past weekend was a big birthday for my Dad and we had a reunion with family I hadn't seen in eight years. I dreaded the looks on their faces when they saw me in my chair for the first time. Wonderfully, all they seemed to see was me; after hugs, and settling in together several of them asked me gentle questions about my health. I could feel their love and concern and didn't experience any pity.
My life is more than different with this MonSter hanging around. I can't escape it, not even for a minute, but I can choose to lead a full life.

The Meaning of a Life

2009-06-09T08:22:00.000-07:00

I learned something in Sunday school this week—no, it is more accurate to say I was reminded of a fundamental truth that is foreign to the western focus on ‘what I do, as testified to by what I produce’ as how to define an accomplished life {for those who aren’t Sunday school aficionados, hang in there, this will come back around}

My class is groping its way through Hebrews—one of the meatier books in the New Testament that explores many of the ‘whys’ and ‘hows’ of faith. Chapter 11 profiles some of the flannel board famous— those bible stories with the characters and props cleverly cut out in flannel in full 2-dimensional glory and retold by children's Sunday school teachers until the stories become more like fables than truth; Noah with his ark, Jonah and his whale, Moses and his staff.

These OT ‘stars’ are remembered for the remarkable things they did—build an ark-Noah; build a nation-Abraham; part the sea and lead his people-Moses. Their value and worth came from the things are famous for. This is true for many, if not all, historical figures, such as Paul Revere’s ride, Nero’s violin, or Marie Antoinette’s head. Again, their actions and/or accomplishments equate their greatness.

Back to chapter 11 of Hebrews, verse 13: All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. So, here it is, centuries after they lived and, instead of their accomplishments as the benchmark of their lives, it is their faith—their internal world that truly gives value to their lives.

I struggle constantly with the value of my life as I live it today. Women are held up as the ultimate multi-taskers: bringing home the bacon while looking fabulous and simultaneously juggling family and civic responsibilities—not to mention ‘finding oneself,’ through interests and hobbies. My mom is a nurse, and when she graduated from high school, women had few choices for careers; nurse, teacher, and housewife (and certainly, the career ended when the babies came.) I wonder whether my mom might have chosen to be a research scientist, or a wildlife biologist, or a chef, if she were born in my generation. I certainly was on the track to ‘having it all’ before MS interfered. I had a fabulous career, nice house, active in my church, busy family life—pretty much headed towards the ‘Modern American Woman Dream Life.’

Now, I can no longer do many of the simple things that I used to enjoy: baking, cooking, brushing my teeth—let alone the career path I was on or any of the outward things that gave my life such richness and variety. When I am asked today, what I do, I haven’t had much of an answer, at least one that I took satisfaction in.

Thanks to Hebrews 11, I am reminded that even the lions of the Old Testament, who lived truly remarkable lives, are better remembered for their faith than as 2-dimensional character simplistically played out in flannel. I can live my quiet life with integrity, focusing on what truly matters: faith, family, friendship. Mourn what I have lost and confidently move into a new perspective of how to define what accomplishment is—a life well-lived.

Indiana Jones: my role model

2009-06-03T08:58:00.000-07:00

These past days...

My days are like the work of any Egyptian archaeologist: layers of sand, dirt, disappointment, echoes of the past, and the occasional treasure. Certain things never change and have become my ghostly companions; fatigue, pain, weakness, and depression--the constant presence of MS. Under that is the bedrock: the deep and abiding presence of my faith. Layered over these are the mix of the day to dayness of my world and times of simple pleasures that are treasured.
Thinking through this past week, a series of snapshots play through my thoughts:

spending the evening with dear friends who are about to welcome their new baby into the world.
taking my favorite five year old to her first theater movie. The film reflected in her wide eyes as she came up the dark hallway and first spied the giant images projected on the screen. The play of emotions as she watched the story unfold. And, her crawling into my lap during the scary part while we whispered about the 'good guys always winning.'
saying farewell to one of my spiritual mentors who died Saturday after an aggressive illness. He lived a life full of family, caring for others, and a dependence on his Creator. I hope to live my life in the same way.
feeling the nerve pain in my occipital nerve spike. Laying in bed and trying to fight the fear that it will return as before.
picking flowers in my garden: in shades of purple; lavender and two different rhododendrons. The clematis vine is reaching up and over the trellis while my two new roses are gaining a foothold. The first buds on my other roses are starting to open.
fighting the loneliness and boredom of the hours I spend alone. As I've heard, "the mind is a dangerous neighborhood, don't go there alone." Sometimes it feels like I am waging a battle with the pain, fatigue, loss, and loneliness. It isn't as simple as having the fortitude to do a thing--it is the betrayal of a body and mind that cannot do a thing.
cheering on an old friend who is close to landing a fabulous job. Feeling an odd mix of pride in her accomplishment (she is one of the smartest and most accomplished people I know) and envy stemming from the loss of my own profession.
going to church with my son: singing my favorite hymn and communing with God.

My days aren't simply up or down, good or bad, well or unwell; they are a patchwork of moments, feelings, and interactions. Things that sustain me and things I endure. And, like the man digging in the sand searching for ancient treasure, I am committed to this life of sorting and sifting through the days and treasuring the best times.