Shouldn't I Be Swimming?

It is almost the three-month anniversary of my surgery and my last post. So much was expected; so much was promised; so little of these expectations and promises were realized. I had two surgeries at the time. An illeal conduit that rerouted my bladder function to a urostomy bag on my side and a novel surgical technique involving a caecostomy tube inserted from my side into my secum to address chronic constipation from neurogenic bowel.
The results? Mixed to down-right poor. The experimental caecostomy tube is, on one hand, a smashing success. For the first time in five years I am not constipated and taking every laxative on the shelf. I am not chained to a toilet. I am not having break-through diarrhea.  In about 30 minutes, every other day, using a flushing apparatus, we run about 1200ccs of warm tap water through the tube and flush out my colon. And just like that. Somewhat normal. The downside? A five inch long tube that oozes gunk 24/7 stuck on my belly. It can also pull out. As I recently discovered. 
But, the truly heart breaking, gut wrenching, just about done me in is the other surgery. It failed. Apparently the surgeon missed that I am a fat woman. Or, more accurately, dismissed our concerns pre-op. And, sure enough...my belly has the wrong kind of fat for this kind of surgery. See most fat people keep their fat nice and tidy under their facia (the tight musculature that holds in all of our guts) I have the audacity to have no fat under my facia and a big juicy layer on top. Much to the surgeons dismay. So the stoma he tried to build to bring the urine up the surface tends to shift. This causes the bags used to hold the urine to come loose. I then am chronically soaked in urine...my clothes, my bed, my skin. The only thing that helps is to lay perfectly still in my hospital bed. By the hour. By the minute. By the day. In a recent 24-hour period the bag had to be changed 5 times...each time takes 1.5 hours...that is 7.5 hours our of 24 spent on urostomy bag problems...a full work day.
I have had two major abdominal infections in the past eight weeks; a 1.7 centimeter deep wound in my abdominal wound that took 7 weeks to heal; my MS is steadily getting worse; as a result I fell out of bed and sprained my left arm: and none of these come close to my most challenging, life-impacting, crushing impacting symptom. Four-weeks ago I had a high fever and started a second abdominal infection and at the same time, in what remains a mystery, I lost my appetite; my interest in my food; food became an alien thing, that to this day, I have to force myself to eat. I choke down small bites of turkey/mashed taters/noodles/broth/apples/tea. But only if I don't think about it too closely. Only if someone reminds me to eat. It is like someone turned off the part of my brain and body that needs and enjoys food. My sense of taste is off. Just now maple syrup had a flavor that seemed good-but nothing like what I remember. 
One of the hardest things is that as a fat person: people are so excited I am losing weight they seem to miss that something is seriously amiss. If I were 160lbs and had just lost 30 pounds in a month, no one would say, "great keep it up!" But, when you lose 30lbs at my weight people congratulate you no matter that reason. It makes me so angry. Thin is so important that it is OK for me to suffer. And meanwhile something is deeply off kilter somewhere. And all my surgeon seems to focus on is his happiness that I am getting rid of some of this dreaded fat.
Now I am supposed to be getting geared up for a second surgery. I don't have it in me to go into the details. I do know that physically, spiritually, and mentally I am not ready. I don't trust my doctor right now. No one can tell me that I won't be in this exact same place three-months after the next one. I don't trust much of anything right now. I am so worn. So frazzled.
Wasn't I supposed to be swimming now?

It Is All A Little Too Strange

This is one of those blogs that isn't already written in my head. Usually I have a fairly clear 'thesis' statement and major plot points: some where I want to take my readers or some thing I want to say. It is more that my life feels like it is caught in some sticky web of cotton candy that has a slightly unpleasant odor. My body has had a major trauma and I can't quite seem to incorporate that into my reality. I am not sure what normal is anymore.
Everyone asks me how I am doing. That is the big  central crux issue. Well, I've learned, rather successfully I might add, how to have 1000ccs of water flushed through a Caecostomy tube into my colon so that my bowel is flushed out every day. The plastic bag that hangs on my side to collect urine I try my best to ignore. At its very center is what looks like a melon-ball scoop of steak tar-tare that constantly seeps urine. It is more than odd that I never stop peeing. And the long strip of staples that reaches up like a fiddle head fern around my belly button seems like a great dividing wall from the old left side of my fat normal belly to the appliance laden, ooey gooey, frankly rather repulsive right side.

Not for the faint of heart....8" incision

My body feels foreign and out of my control now. Caregivers, family, doctors and just about everyone has an opinion. And whether from deep depression, or really overwhelming surgical pain, or grinding neuropathic pain I just can't make any more decisions. I don't want to answer my phone, or deal with one more giant to be slayed. I am worn to a brittle thin edge.

And yet, I have to go forward. So I do.

I am encircled by amazing family and friends who do so much. My faith is so real to me that in middle of the night I can feel Him all around me when I cry. Life is still rich. Life is still worth living. So I will, So I do.

Closed for Plumbing Overhaul

Friends:

Grace2Wheel is Away for Awhile

On Oct. 29th I am having two surgical procedures that will keep me from this blog for awhile. Since I haven't been posting this past month, maybe a little explaining is in order.
The surgery is easier to explain: it is a simple matter of nuts and bolts; bladders, intestines, and colons; oh my. The silence is muddier waters. I wish I could list in some sensible fashion why words have trickled through my fingers like the last gush of water through a garden hose. My brain, my days, the universe seems squashy and unformed. I seem to swing between bouts of nerve pain and fatigue mixed with little dashes of satisfaction and joy and doused with pervasive depression. Kind of like finding one last peanut in the bottom of the Cracker Jacks box and then watching it roll away between the stadium seats. I am trying so hard to find this life I have to be one worth living for.
This surgery is one of these mishmashes. At the end I will have tools to manage my malfunctioning bladder and colon. I will be able to go into water again for the first time in over two years. At the same time it is four hours of abdominal surgery, at least eight weeks of recovery and countless amounts of pain and hassle heaped upon what is already too much pain and hassle. I am choosing to believe that it will be worth it.
I am doing well the things I do well. Like getting organized. Like tying my fear and anxiety up with a pretty bow and hiding the ugliness in the back of the closet. Like hiring doctors who know what they are doing. Like using dark humor to blast through the darkest moments. Like leaning on my hubby who is always there as well as friends and family. A special thank you to my sis-in-law Jen who is coming from Vermont for ten days to lend a hand, what a blessing you are!
Well, dear blog readers. When I talk to you next I should be through this and have a tale to tell.
Until then-All the Best.

New Perspective

The other evening I visited with a friend who has a different but equally voracious chronic illness to appease. He spoke of his longing for his lost career, the 'toys,' he has given up, the dreams that have withered and died. His pain seemed to float on the air like a slightly sour smelling incense. Even though I walk in similar paths and know the gouges and cracks that illness has worn; it was heart breaking to sit and listen. I knew him when, I knew him before. And it quite simply sucks the air from my breast to be so powerless. No bandaid words exist to better him or me, for that matter. And, I realized what an insight he was giving me. 
Confession time. I am so alone and lonely that I ache with it. I have many people who 'do' for me; clean, run errands, pray, bring books. The list is endless. I always feel so guilty for that not being enough. But I miss having friends. I miss being part of a bible-study group. I miss girl's night out. I can feel the difference between obligation and desire. Over the past year I have lost touch with many of my closest friends and it kills me. 
Being in my life is no piece of cake. And, it was sitting and talking with my friend that gave me a glimpse of what being in my intimate circle must feel like. I've never faulted others who've distanced themselves. As I've said before, my life is one heck of a twisted carnival ride. 
I have to find a way to live without my old nemesis's envy, jealousy, and anger. When I hear of others lives and their reasons for not being in mine too often my first visceral response is white hot and ugly. As my own emotions are being worn down to the consistency of drought-stricken corn I simply can't seem to work up empathy. This isn't who I want to be. Somehow I need to slip off the 'old me' and those who peopled that life and learn to find joy in this pared back world that MS has led me kicking and screaming into.
I no longer have the mental or emotional capacity to pursue the ones I've lost closeness with. I dread their upset. I mean no judgement with these words. If anything, maybe reading this can give folks the freedom to live the life that is best for them. Being open to the many hands who reach out to help and accepting the love that accompanies them isn't such a bad way to live with this MonStrous illness.

Scary Stories

It was one of those grim slog MS days; to be endured, but most likely survivable. The hubbie transferred me from bed to chair when he arrived home from work and I made my way into the bathroom to empty my catheter bag. I pointed out to him that my caregiver had moved the dog's new plastic bottle-filling water dish outside the door because the bathroom was too hot today and I thought to myself, "be careful not to run into that when you back out." Then, I went in, did my business and backed out and ran over the 'thing' squishing it. And I didn't know what it was for a moment or two. Or why it was there. It was like my memory stepped into a dark room and shut the door. I knew my chair had run over something, but not what it was or why it was under my wheel. I felt the seconds ticking as I tried to put it together. Somewhere between a swear word and my husband responding I figured it out. But for a long black pause, nothing.
Such tremendous fear.
I can handle just about anything that MS has dealt to me. Have thought through just about every scenario that MS is reputed to have in store. But the specter of brain deterioration and memory loss is clearly my achilles heel. I thought these fears were tightly packed away in the back of that closet clear in the back of the storeroom that never gets cleaned out. I've ignored the occasional slips and lately, when bigger ones have happened, it was 'just fatigue' or 'the heat.'
Something about tonight's episode was different. I am not quite ready to pick apart why. The fear was so real I crawled back in bed like a wounded bird. For some reason my body felt numb as I tried to puzzle through what had happened and what I was feeling. The hubster did the guy thing and focused on resurrecting the water dish and clearing up the pool of water. I haven't worked up the energy to ask him if the dish survived. I did the right thing and eventually moved out to the couch.  Frankly, I am still feeling too numb, too afraid to care about much of anything.
If you are a prayer, say a few extra for me. Seems like the MS is taking a heavy toll these days. 

Life With Fog: Is It Worth it Part 2

Yesterday was Sunday. I needed a haircut in the, 'if I don't get one I'll either shave my head or folks will think I am a transient,' kind of way. It is odd now that I am a full-time bed filler rather than a professional worker that what I look like is no longer critical. (except to my hubbie who still seems to think I am the cat's meow). I mean, you don't see many fashion accessories that complement a catheter bag. So we headed to the mall to one of those haircuts in under 12 minutes places. It was one of those rare cool in August mornings, my MS was at a low thrum, and it seemed possible to be out and about. Lurking in the background was the ever present question: For how long and at what cost?
Recently, one of my closest friends said that she has trouble seeing my cognitive dysfunction. I tend to be talkative, happy, and positive. I finish the Friday and Saturday New York Times crosswords about 70% of the time. So, I am no dumb blonde. I am also rather stoic about the endless gnawing pain and creep deep in my cave when it becomes unbearable. No one wants to hear about it and I am sick to death of living with it. I can blithely explain the cognitive impact as that I have trouble following directions and remembering the last thing or two I am asked to do. But what is harder to explain is the fog. Thick soupy stuff that winds in sticky tendrils through my brain before making its  way down over my eyes and lips and finally wending its way over my arms, torso, and legs. Until I am cocooned in a gossamer shell that I can see vague images through, but can't seem to break free from.
Haircut joint...fog free. Wandering over to lunch...feel the first tugs or slips; my left arm has to be reminded to do its thing, the sunlight hurts my eyes, I can't quite process how to negotiate the curb cut/street/parking lot combo to our destination. At the restaurant the noise and conversation start the downward spiral. It feels like my brain is stuck on a tilt-a-whirl. I can't seem to filter out any of the myriad noises around us and so can't concentrate on the menu. Eventually I pick something. After the waitress leaves I realize I am not sure what I ordered. I smile at my hubbie, we talk and food arrives. Oh, good, salad. I can eat that. I want so badly to be here with him; but my brain is at war with reality and my body is paying a high price.
Our plan was to stop at JC Penneys on our way back to the car. Sounded good at the outset, but now I am not so sure. It is so hard to explain. My body is drained, my mind is befuddled and I can't seem to keep them in sync or on track. We go in and ask a clerk the way to our department. I can hear her, but can't follow what she is saying. I ask for clarification and I can tell she finds me odd. John leads the way. I can't seem to track the item, size, and style I am looking for. I am snarly and trying to put on my normal face.
Back home, after a 1.5 hour jaunt I am smooshed out like roadkill. Two maintenance errands and a bite to eat have cratered me for the rest of the day. My nerve pain is roaring back and the MS fog has rolled in. I can't seem to work up enough fluff to converse with the old man or answer the phone.
Damn, but I quite simply hate this illness. Quite a high price to pay for a cheap hair cut and a pair of sweats.

Was It Worth It? Ode to Uncle Bill

I went camping! Or, more accurately, my alter ego, Uncle Bill, as well as my extended family escaped to the Oregon High Cascades for five days to family reune (this should so be a word) and celebrate my brothers 50th. What a week, I never thought I would be able enough to pull off such a feet. And, it is clear that I no longer am. Without the army of folks who cleaned and shopped and packed; the attentive family members who waited on me hand and foot; my right hand hubbie; and my own pig headed stubbornness—it never would have happened.
When the hubbie and I were first together some 26 years ago we camped from a 1969 MGB convertible with a pup tent and a 6-pack cooler. Several years later, he and I and our then 4-year old son took almost a month to camp our way from Alaska to the lower 48 in an old Dodge van; a trip of a lifetime. Now, I need a flotilla of gear just for medical equipment and supplies. A gimps gotta have her commode and substitute hospital bed as well as catheter and copaxone and on and on and on! Little hiccups like keeping meds cold and the chair charged and this and that sterile. A tremendous pile of work.
Was it worth it?
I have to introduce my other MSers to Uncle Bill and give them permission to use him. To explain that some back history is needed. Probably from birth, I am someone who has excelled at and enjoyed planning, organizing, and executing things: from tea parties with friends, science conferences for work,  to 80th birthday parties for my gramps. It was a big part of the career I once had and the role I played in the family. Not in some sort of Martha Stewart matchy matchy way, but more in a desire to bring people together and create notable experiences. It is also something MS has stolen from me. So, I created myself the alter ego of Uncle Bill. He is that kindly bachelor uncle who is good for a laugh, loves to play games, enjoys the kids...but often nods off and naps, is never expected to cook or plan anything and really can't be trusted to pick things at the store. No gathering would be complete without Uncle Bill. Now, when my family gathers, I put on my Uncle Bill hat and consciously set aside my old organizer, planner extraordinaire persona. It's a great way to let others know what I can and can't do and a gentle way for them to remind me when I slip back into my old role. 
At the same time, laying on the chaise lounge, while others flip the flapjacks, cast the line, and hike the trail to see the rare orchid, I have moments of envy and jealousy that burn through me like lightening bolts.
Was it worth it?
Thursday, four days after we came home an MS attack hit with all of the ferociousness it could muster. I have Occipital Neuralgia that pulsess from the back of my head with a white hot band of pain and stabs into my eye. My left arm lost a big chunk of use and my nerve pain ratcheted up to an almost unbearable level. Most scary of all was the precipitous drop in my right lower leg and outside of that foot. The foot is curling under and, to my eyes, it looks something like a preying mantis . Eleven days later and my body seems to have short-circuited and doesn't seem to know how to stop. Of course this episode could be from anything. It could have happened whether I went camping or not. I'll never know.
Was it worth it?
My answer varies from moment to moment and day to day. Our house is still a disaster zone and my body is a mess. But my heart is full of the love from my family and the chance to get back into the mountains and camping that were once such a part of my life. Will I try it again? I do know that just the two of us will probably stick closer to home. I am a lot of show for one man to take on the road.
But if Camping 2012 is to be my wilderness swan song. Then, yes, it was more than worth it.

Thank You for the Words, my Big Brother

My brother lives on the other side of the country from me and so we see each other rarely. With my disability our visits are limited to when he can come here; and with a young family, working organic farm, and resulting stretched-thin budget, that only happens once, maybe twice a year. We try to catch up on the phone, but as was the case with his recent haying season and my 6-week fight with a nasty exacerbation it can be so hard to make our schedules and our lives mesh. Too often when we finally catch each other on the phone something is cooking at his place or I am too tired for us to have a good connection. But, when we do, he so often can drill through the layers of stuff that seem to hold me like a cocoon and open my eyes to just what is at the heart of me. So thank you big bro' for finally giving me the words to return to my too long silent blog. I sure do love you! (and happy 50th too)
Two things, one big and in my face, the other silent and wrapping like fog around the edges of my thoughts, have coalesced into an almost deliberate need to not think about my MS. Maybe if I just don't think about it, it won't be real. Next year is my morbid 10-year, do I call it an anniversary? I see it more like a giant clock that is set to begin ticking. 38 plus 10 is 48, even in theoretical physics, I believe. And that is the first year, in the range of years that I have to live. I thought I was fairly ok with the the whole, 'you can expect 10-15 years,' told to me by two different neurologists over the past nine years. But now that the first year of that range is on the horizon, I am speechless.
Last week I had an allergic reaction to methylprednisolone. This is the go to drug and the only drug that combats exacerbations. Follow ups with an allergists were mixed and I have a yellow light to try again in a hospital setting. But, odds are high that I will no longer be able to to take this medication at the dosages required for efficacy. This means that when I have relapses and lose functions I won't have any medical recourse to regain them. Last December when I went into the hospital I couldn't hold up my head or sit up. After a week on the steroid, my head was stable and over the next few weeks I regained 85% of my trunk stabilizing muscles. Without steroids, it is likely this wouldn't have happened.
Now I hear the tick, tick, tick of that 10-year clock getting louder and the biggest weapon in my arsenal is either off the table of greatly weakened. I have no words to express how this feels. 
It was my brother who connected the two. Made me see that by pretending nothing was wrong I could hold off the fear and tears, but at too high a cost. I didn't buy him a gift for his birthday, but he certainly gave me one. Thank you, Mark. 

Thursday

I woke up. Hands, feet, head, belly. Normal, MS normal. What a blessed relief. Almost felt as good as the smell of the sweetest spring rain. After a month-long bladder and kidney infection; seven days of constipation; and too much, things felt—almost normal.
{side note: normal is not kick up my heels, open my own container of yogurt, pick something off the floor, think a clear thought, go to work, grab a cup of coffee. normal is still pretty darn abnormal}
The morning grew into a pretty good day. I was gifted with a room remodel and now find my hospital bed nestled into a brightly organized room with floors and a window that looks out onto the garden. I have my own TV, and my books and computer are at hand. It was one of those times where I heard myself thinking, "I can do this." If my life is going to be this bed, this room, these dogs, this body and I can get through weeks like these last couple then OK.
A couple days earlier, at two in the morning, after six days of ingesting every evil potion trying to make my seemingly stone-deaf colon listen to my pleas for cooperation I found myself praying for relief. Then, I stopped and thought, "why would the God of the infinite universe be concerned with my poop problems?." I was so utterly miserable and in pain and sleepless and vulnerable. Then I realized that in that moment perched naked on my commode gripping the handrail trying desperately not to fall that He was more present and listening to my prayers than I had ever felt Him. The words from a favorite praise song came to my mind, "Tell me, once again, who I am to You." 
I have a caregiver in the afternoons now. And it is really good. She is kind, professional, and is giving the hubbie and I some much needed help. The kitchen is spiffed, dinner is cooked, and most importantly, I am receiving consistent daily support with my care. She came in after lunch Thursday afternoon and we were busy with meds and exercise. Things felt good.
Do you sense a but? It is coming. Since February we have been working to be on Medicaid so that I can have a caregiver and help with medicines and other expenses. The first hiccup is the monthly cost: over $700. But, somehow we shaved and cut and trimmed and made a plan to do it. It is an endless battle of phone calls to a faceless bureaucratic spiderweb that twists and tangles to the point that a former grant administrator and a current auditor can't untangle what it takes to be a participant. Thursday afternoon I found out that we were told incorrectly and one of our largest expenses is not covered. Just like that. No Medicaid. No options. No caregiver. Well, maybe no caregiver.
I never give up. I am a fighter. I closed out my day by turning off the phone, trying to breath, curling up with the hubbie. Can't I have more than a few hours of only abnormal?

I Think; I Think: I think

MS is eating my brain. Now isn't that a cheery thing to think about. That ugly bit of truth is always niggling at the corners of my reality. Most people see the physical price of the disease; the gimpy feet, the lack of energy, the wheelchair, the catheter. But, all of that is nothing compared to what is going on inside our skulls.

My first exposure to the grim reality was about 12 years ago at an MS lecture by a researcher discussing Copaxone's early study results. He showed MRI pictures of MS brains with what he blithely termed 'black holes.' Big dark areas that MS had bored into the brains of patients. I am sure the lecturer went into further detail, but I just sat their stunned. That was my brain, on some future day, up on those screens, and it wasn't pretty. I hadn't known.
That Spring, at the local MS walk, my hubbie and I met a couple where the reality of these black holes became all too real. The woman was my age, and also used a wheel chair, but she had the mannerisms, speech, and affect of a young child. It was chilling. Another chilling glimpse down the rabbit hole.
It turns out that Copaxone {the daily injectable med that I've taken for 12 years} wields a big club in the fight. Some studies show that it slows or arrests the brain deterioration. I have only missed a handful of doses in these many years trying to keep the darkness at bay.
What then is cognitive impairment? Since my December crash I've mentioned that I've notice how much worse my own has become. The MS society lists these as the most common effects: (they tend to be rather pollyanna and leave out some of the grimmer things like losing control of inhibitions, and personality changes that I don't seem to have yet, thank God)

• Memory (acquiring, retaining, and retrieving new information)
• Attention and concentration (particularly divided attention)
• Information processing (dealing with information gathered by the five senses)
• Executive functions (planning and prioritizing)
• Visuospatial functions (visual perception and constructional abilities)
• Verbal fluency (word-finding)

Certain functions are likely to remain intact:

• General intellect
• Long-term (remote) memory
• Conversational skill
• Reading comprehension

What this means in my day to day life are episodes like:

• writing the answer to a New York Times crossword clue in the wrong boxes, and not being able to figure out where the mistake is.
• sitting with the Hubbie, making a To Do list at 7am and when we check in at noon, having no memory of making the list. No recall at all.
• I can no longer remember who the characters are in books, "Joe walked into the room," leads to flipping back through pages trying to figure out who the heck Joe is. 
• Not being able to follow the simplest of directions or recipes. Put 1/4 cup of sugar in a separate bowl...turn to the measuring cups, can't remember what size...go back to the recipe...can't remember what item I was on...sugar or flour...oh, flour is in the bowl...sugar...now, a 1/4 cup...back to the drawer...still don't know the size...sigh.
• If the TV is on and people talk I can't process either one. At all. Ever. It is like word scrambled eggs in my brain. 

The oddest thing is I am as smart and personable and funny and outgoing as ever. Yet, I feel locked in a box made of sticky taffy. People look at me baffled when I try to explain or they forget or they ignore it all together. Cognition isn't personality or intelligence. It is brain function and the slow deterioration of mine is making me crazy.

Swimming

When I was a girl, on particularly hot summer days, I loved to swim below the surface of a lake, almost deep enough for my back to touch the bottom, then flop over and stare up at the crazily distorted view. The light would reach down through the murk and spread out through the grey-green bits and seem to reach for me, pulling me back to the surface. It was so tempting to stay cocooned in the silent murky depths. When my need for oxygen would overcome the pull of this mysterious world I would float slowly to the surface and let the harshness of the sun and bright sky break across my face. Always, the pull of the water called me back underneath.
This past month has felt much like this. I don't know if it is the depression speaking louder than usual or the grinding nerve pain or the ongoing battle to take care of my basic needs or the long hours I am alone every day or the cognitive losses that are piling up or the never-ending battles with doctors or the toll this takes on my hubbie or this or that or the other thing. But it is all too much right now.
I think you have to have had a major tragedy or a chronic illness or poverty to really understand how alone one is with these things. At the end of the day, even with the many people who so graciously give of their time, love, and care, I am facing this monstrous reality alone. It is hard to say this, because I don't want for one second for anyone in my circle to think I don't appreciate them, but cold hard truth is: everyone else has to live their own lives and should. From friends and family with their own struggles, mortgages, kids, joys and sorrow to byzantine bureaucracies that ask more of me than I think I can give.
I haven't written in some time because I feel some social obligation to be appreciative of what I have. I don't want to offend. I do have much to be grateful for. To be blunt, I just don't know how much longer I can keep life and limb together.
And, I really don't have any choice but to figure something out. I do know that in order to keep writing this blog I have to have the freedom to be honest. So, if mucking around in the murky end of the pond isn't your cup of tea, I truly understand, most of the time, I'd rather not be here either. 

Taste of Life

Cherries aren't my thing. Actually, I love the sweet off the tree crisp sour sweet ones that can only be found in the ripeness of summer. The syrupy cloying gloppiness of the maraschino variety gives cherries a bad reputation. So, when offered cherry ice cream or pie or cake I pass. But once, at least 20 years ago, a piece of Black Forest Cake was so amazing that it still resonates in the memories of my tongue. Tart pie cherries almost too sour to eat, dense chocolate almost too bitter to eat stacked in impossibly high layers. Each bite a perfect blend of tart, bitter, savory and sweet.
This past weekend my closest women friends gathered for no other reason than to fulfill my birthday wish. At one point an almost 80 year span ran from my oldest to youngest guest. What a tremendous joy to have so much love fill up my little house. When women gather, at least the kind of women I hang with, more than just idle chatter fills up the spaces. The rich variety in each of our lives from the surface busyness of kids, careers, retirement, and vacations to the harder stuff like finding peace and one's place in the world created some great conversations. It was a truly memorable weekend.
I often hear folks say that their own trial or challenge isn't worth mentioning because it somehow doesn't measure up or compare to my own. As if MS has made my own life somehow so immeasurably worse than anyone else's that their trials are trivial in comparison. The tapestry of lives that were unfolded and poured over this weekend demonstrates how much value each person's life has and how much it means to me to be part of each person's journey.
Early this week came the sad news that one of my dearest friend's husband is very ill. I am simply heartsick for her. It is one of those times when I rail against this illness and the limitations it places on me. I want to jump in a car and be at her side. I want to clean her house, love on her kids, do something, anything. Instead I am sitting here in this hospital bed. I know others will step in. I know my prayers are more than enough. But, it isn't enough. 
What I have to figure out is how to live this life. So much in it is good. And, too much of it is achingly hard. Flip of a coin, from moment to moment. I am on this path and I believe it is where I am meant to be. I simply don't like it very much of the time. But, then there are those heavenly bites. The succulent bits that linger on my tongue and I am transported. Somehow I have to reconcile the two.

My Own Private War

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

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 a credit of up to $50 for the loss of use of your limbs.
You need a disability certification from your 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

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...

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

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.