Tuesday, December 28, 2010

'M'ore of the 'S'ame

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.

Wednesday, December 15, 2010

The Sound of One Hand Typing

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.

Wednesday, December 1, 2010

Opening and Closing with Another's Wisdom

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.


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

Tuesday, October 19, 2010

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

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

Thursday, October 14, 2010

Safe or Sorry: this is my Question

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.

Sunday, October 10, 2010

Circus Acts aren't for the Faint of Heart

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.

Monday, October 4, 2010

A Week of Extremes

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

Friday, September 17, 2010

Thanks for the Laugh, King James

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

Wednesday, September 8, 2010

Everyone is Invited

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.

Wednesday, September 1, 2010

Where Did August Go?

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

Sunday, August 1, 2010

Update: Post Hospital—7 Days+ 1

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.

Sunday, July 25, 2010

And now what?

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.

Friday, July 9, 2010

The Bad, the Normal, & the Hilarious

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 ringingit 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. 

Thursday, July 1, 2010

Would You Like Soup With That?

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.

Tuesday, June 22, 2010

To sleep, Perchance to Dream

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.

Tuesday, June 8, 2010

A Little Light Through the Fog

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.

Monday, May 31, 2010

Question Series #1: One More Thing

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.

Friday, May 14, 2010

That's Good...That's Bad

 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.

Thursday, May 6, 2010

I am sorry to say...

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 wor

Wednesday, April 21, 2010

Update: the Good, Bad, & Ugly

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? 

Sunday, April 11, 2010

Wanted: Magic Bullet

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.  

Monday, April 5, 2010

Sound, Light & the Fury

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.

Wednesday, March 31, 2010

Not Regret, but Fodder for Dreaming

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."

Friday, March 26, 2010

Morning as Metaphor

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.