Wednesday, November 6, 2013

Peaking Behind the Curtain

It is the oddest misdirection, slight of hand in the world of MS. One I have blithely practiced selective-blindness of for the past 13 years. That behind the various parts of me slowly, inexorably being lost—the wheelchair, the ostomy, the career loss, the nerve pain; the seemingly endless list of losses is one thing that I seem to have pushed aside. That the MS world keeps wrapped in a greasy cardboard box and sticks in the back of the janitor's closet. MS is a disease of the brain and all these years while my body was falling apart, so to was my brain.
Earlier this year I had my first series of seizures in the hospital. Not the stick something in my mouth, writhe on the floor, stuff of movies. But more where my body locks down, becomes rigid. Sometimes I can hear, often I appear to be sleeping, but internally my electrical systems are jangling on full overload. Lasts for an eternity but is really from five to 24 minutes. I come to lost, shaken, disoriented. The revered hospital neurologist declared it was either long-term sleep deprivation or whispered that it might be undisclosed trauma (the go to diagnosis of neurologists everywhere). She made no mention of seizures and MS. She did put me on a sleep med that scared me near to death and failed to mention that at higher doses is a powerful anti-psychotic. The medicine was a nightmare. Eventually I stopped taking it. Feeling better from that and hoping the seizures were related to being in the hospital or the exacerbation/infection I chose to put them back in the greasy box in the back of the closet. Given their silent nature and infrequency, it wasn't hard to do. At first.
With increasing frequency over the past two months the seizures are now front and center in mine and everyone's life who cares for me. I have days where hours go by and I can't fully rouse from the cycle. My brain feels like a layer of wet insulation is laying on it and electricity is coursing through it. Equally frightening is my speech has started to be affected. Often when I come out of an episode I can either not speak or the words come out in gibberish. What is so unearthly odd is that I can still write notes and think clearly. Even during non-seizure time chronic 'word finding' and saying nonsense phrases happens. It scares the people around me. Mid conversation I suddenly slip into talking in gibberish or rambling about something that doesn't make sense. The other morning I had an impassioned conversation with my husband, right in the middle of a normal one, about how tired we were after driving to Bend (a city two hours East of here) during the night. Later he questioned me about it and I had no memory of what I had said.
I am trying to research what is happening. As I understand it, it is pretty grim. The deterioration in my brain is getting into the connective tissue that the electric current flows through to keep me up and running. This is late stage MS. My Neuro says little else can be done. So now what? Do I find some way to live with dignity while my brain deterioration starts to be visible? Do I want to? Is there some way to fight this? I just don't know. I am terribly afraid.

Friday, October 11, 2013

Fear in Every Day Life

It is 7am and I am in bed, the room is dark and all is still. Big fat tears seem to come from my eyes unbidden. These past hours have seemed endless. Hopeless. Unbearable. 
I made the now seemingly crazy decision on Wednesday to drive along with my husband to Portland (about 2 hours north) to see my son for dinner. I slept all the way back. Five hours total and my body seemed OK when arrived home at 9:30. By noon on Thursday I was paying a heavy price for dinner out.
My caregiver came over to say her morning goodbye and I was unresponsive. A few minutes later my hubbie came in and together they couldn't get a response from me. At one point he wasn't sure I had a pulse. Eventually I began to come out of it, and for me the fear kicked in. I was disoriented, unsure of time and place. But the worst was brand new; I couldn't speak. For about 30 minutes I could think of what I wanted to say but the connection between thought and words was lost and I couldn't form words. For the rest of the day and continuing into this morning words are elusive and speaking seems like a chore. Honestly, I never considered losing my ability to speak. Dear God, please don't let this be my reality.
At around midnight last night one of the worst cases of laryngeal spasm hit. I was jerked from sleep unable to breath. My throat completely sealed off. Pounding on the mattress I snatched my hubbie from sleep. He ran to my hospital bed and got my rescue med; I took a slug. Like magic I could breath. He held me until I stopped shaking and went back to bed. I lay there in the dark, praying and crying. When would it happen again?
My brain feels like it is packed with wet pink building insulation material. My body feels like it is out of my control. I am tired. I am in terrible pain.
I must acknowledge my exhausted, worried, sweet, husband who is off to work this morning in spite of his spoken desire to stay here and care for me today. I couldn't do this without him.
Keep us in your thoughts and prayers friends and family. Things are tough right now.
I will also say that I am not willing to give up the occasional dinner with my amazing son, even if the cost is a big upswing in MS symptoms. I can't live with this MonSter if I can't LIVE occasionally.

Tuesday, October 8, 2013

First Step Name and Know Your Fear

I tried to find just the right gargoyle to give my fear a quantifiable face. This one was too cartoony and that one was too daemonic. Then I tried clip art images of fear, but they seemed staged and simplistic. Names for my fear all fell flat. This wasn't something I could have tea with or arm wrestle out the door. Then I tried on some of the truths, pack it in a suitcase and leave it at the door, or get to the feeling behind the fear, or drag the fear into the light, face it, and be victorious over it. Nothing worked. Fear seems to hover and slither over me like a shadowy beast. 
What is this fear and why doesn't it leave me alone? Finally, I have come to realize the difference. This isn't fear based in the echo of childhood trauma. Or fear of an unknown future. Or fear of noises in the dark. This is fear based in reality: in choking, in brain fog, in feeling the threads bursting at the seams. MS is affecting the core of my being and I am afraid.
Several times a day I have these 'fugue' states that are part of Paroxysmal Syndrome. An MS cluster of symptoms that includes non-epileptic seizures, stabbing nerve pain, deep spasms, choking, and loss of temperature control. These fugue states can range from a few moments of sleepiness to up to 20 minutes of unresponsiveness where I am locked in my body, can hear but can't move. I come to shaken and disoriented. The fear is: what if I don't come out of it; what if I stay locked in my body forever.
The choking is part of the Laryngeal Spasm, but increased. Now if I take too large of a bite or chew too long the food builds up and seems to catch on the back of my tongue and I can't swallow. Also, when I lay in certain positions or turn my head too far to the right, my larnyx closes off and the choking starts. The fear is: this clot of food is cutting off my throat, I can't breath, I can't swallow, help me, help me.
My brain feels like a metal band is encircling it and slowly tightening around it. I have spasticity in my neck that can force my head down and back by about two inches. The nerve pain in my extremities is insane. And so are the charlie horses and spasticity. The fear is: how much worse can this get and can I and will I survive whatever is next

Wednesday, September 18, 2013

How Then to Live?

I recently watched the premiere of the TV show, Ironside, in which the lead is clawing his way through the first months after becoming a paraplegic from a gun shot. In one pivotal scene he meets with his old partner, who is clearly emotionally ravaged by what happened. Their conversation distills down to the one who stays stuck in the emotional muck of what happened and the other who has no choice but to face and deal on a daily basis the brutal reality of living. He has to get up every day and face his changed body and shattered dreams. His partner has the luxury to stay stuck wherever he chooses. Disease, illness, and injury simply don't allow for this; every time one hurdle is crossed the next one is coming. And you need to be ready. No one but yourself can ever fully understand what it is like to be in a daily battle for survival. Every day, I ask myself and I pray to God, how shall I live today? I know the only way I will survive is if I stay strong and have other people in my life.
What can other people do to help? I am hoping that after reading last week's post, and if you are still reading today, then you are ready to join me in what is quite literally a fight for my life. And it isn't necessary to donate a kidney or give up a weekend or take out a second mortgage on your home. I desperately need connection and encouragement from others. Here are a few ideas that have popped into my head:

  • Electronic Cards. For a $12 yearly membership at, in about 10 minutes, you can calendar a years worth of cards that will pop up on my computer. A small investment of time and money to bring little pops of joy into my life. Or regular cards.
  • Magazine Subscriptions or Kindle/Amazon gift certificates. $5 goes a long way. I spend countless hours laying in bed twiddling my thumbs. I need creative ways to fill this time-help me think of ideas.
  • Stop in for a short visit (always call first) or send me an email with a few pictures and a description of a recent adventure you went on. I love to hear all your news and your lives. I love pictures of your kids and news about them. My own world is pretty closed and quiet and too often quite boring. I am not the best at returning email, but will try. But it is great to hear from folks. Please don't forget about me. I am still here, just a much slowed down quieter version of myself.
  • Play WordswithFriends with me. Not sure what that is? It is an App on smartphones, laptops, etc. that is a simplified version of Scrabble. Let me know and we can exchange all the info and get to playing. Lots of fun.
  • Send me links to interesting articles you've read. If you wish send me your comment(s) on the article---maybe we could have a discussion.
These are just a few ideas. And, as always, no one has to do anything. I am just asking that anyone who is in my circle and has a connection to me to seriously consider doing something concrete to better my life a little bit. I need all the help I can get right now. I have an 86-yr old woman in my life who for the past 8 years has called me every Thursday morning just to check on me, tell me a joke, and tell me she cares. These calls last for a couple of minutes. Kind of amazing to consider that kind of commitment and dedication. Thank you Alice! Many people do other selfless acts of love in my life. If you would like to get involved it doesn't have to be expensive in terms of money or time; all I want is the human connection.

What do I do to Live

  • Make a choice every day to move forward.
  • Take naps-waking up muzzy headed and warm.
  • Relish Popsicles, ginger ale, and ice-cold melon. Redefine 'treat.'
  • Accept sleeplessness and chronic pain as seamless parts of my life
  • Find beauty in the doldrums. Warm blankets fresh from the dryer, strong fingers washing my hair, hummingbirds dancing in the begonia outside my window
Somehow, like a well-crafted crazy quilt, I put all this madness together and it starts to be semi-functional art. I can be almost proud to be surviving despite the best efforts of secondary progressive MS to tear me to shreds. The path I am rolling down is difficult and I wouldn't have chosen it. But here I am now, 47 and slowly losing ground to this disease. It doesn't have my soul or my spirit and it can't keep me from living as much as I can for as long as I can.

Monday, September 9, 2013

Big Topic: Facing Reality

These past months, since about last November, are the toughest on record in my battle with multiple sclerosis. relentless, close quarter, bare knuckle fights that are ongoing. I am currently having an exacerbation, am on home administered steroids and have lost another chunk of function. Now it is time for me to say a few things and ask the people in my life to consider them and think about how they want to move forward.
A wise person had the insight that my reality may be entering a phase that is too real for folks to handle. I would like to remind folks of a few things, share a few strategies, and if I dare, say what works for me going forward in what are probably the last few years of my life.
Reminders: about my MS

  • I am in pain, serious nerve pain, all the time. 
  • I have accelerating chronic cognitive issues 
  • I am in bed at least 15 hours a day.
  • All 4 of my limbs are now fully involved to some degree.
  • I have chronic pervasive clinical depression.
  • I can eat only a handful of foods and have grinding nerve pain in my stomach.
  • I have countless other symptoms.
  • My health is only going to worsen in the coming months, and years. Whatever time I am blessed with.
Reminders: about my MS and others
  • You look so good-how sick can you be. I no longer have it in me to explain this illness over and over or my experience of it. If you don't understand MS cognition or another aspect do some research, or send John or I an email. He does great research and has a deep clinical understanding of my health. If I don't come across as sick as you expected, either read through my blog, or do some research focused on the invisibility of MS, or just be a part of my life. When I have the joy of company, I rest for as much as I can then pour myself into the visit. My type of cognition issues doesn't affect personality or intelligence. It does make me forget who you are while we are talking on the phone so I jot your name down at first or by the end struggle to place who you are. After your visit I may sleep for hours or be wiped out for days. Refer to the above list or ask me specifically about the state of the MS or my pain. I rarely bring it up in social settings. I would rather be as normal as possible when I see you. Don't confuse me being social with a statement of the status of my MS. And please don't pass your guesses and feelings around as facts or share confidential details with others. If you were here and I spent the afternoon vomiting, I don't to want to spend the next week hearing back from others all about it. 
  • It is more than OK, even encouraged, to make your own way in relating to my MeSs. Look, I am the only person who has no choice on the 'all in' starring role in this all to real reality series. No one else has to do anything else. I am so fortunate in many ways. I have a long-term abiding faith that sustains me. I am deeply grateful to all who do so much for me. Many folks fill myriad niches.
  • At the same time, as the one year mark nears, it is a good time for everyone to evaluate if and how much they are up for the 'real' journey. It is ok to decide you can't be involved or that you want more. If you want off the blog reader updates, send me an email or just delete it. If you ever have any questions, email is best. Phones are tough, but not impossible. If I call and ask you for a favor, No is a perfectly Ok response. I have a big list of helpers. And, if you need respite from my reality, please take it. I don't have the need to know the whys or have a dramatic conversation. I will miss you, but I will be OK.
Reminders: about my life with MS going forward
  • I am in this fight. I want to experience the best life I can with as much sass and verve as I can. But most of that pep is slipping away. Now I am finding that quiet and peace and rest are the reality that suits me best.
  • I have dreams. I have things and people and my God who make life livable. Life isn't just doom and gloom at our home. But it certainly takes the lions share of our resources, energy, spirit, and everything else to survive.
  • I need people to have any hope of surviving what is ahead. I also want to give folks permission to design what that is for them. In my life or not, a little or alot. Figure out what works for you. Keep in mind that I have lost the ability to remember appointments and return phone calls reliably. This is an area that I need help and grace with. Throw out the etiquette book and keep calling, then follow up with an email.
So to put it plainly, I am writing this today 1) to be as clear as I can about what is going on with my health currently and in the future 2) to ask all the people who are in my life to evaluate if they want to involved in this journey 3) to state what I need from this point forward.

It would be easy to respond to me with a 'love you always going to be there.' But it isn't easy to do. Everyone has there own struggles and lives to manage. And my MS is in the messy stage. Really take a deep think before you commit to more than you can honestly do. Only respond if you are moved to. I am not writing this seeking volunteers or money or a mansion. Simply to bring up the hard truth that my body is failing and everyone should be preparing for that in their own way and if they want to be involved or not.

I am too tired to write anymore. Feel free to email or comment. Big topic, hard to explain and harder to talk about.

Wednesday, September 4, 2013

Facing What has Passed

It was one of those quiet moments where you don't feel the sharpness of the pain until later. I have a dear friend in my life who volunteers at least five hours a week to help us clean and manage our house (Amazing!) She and I were going through an over stuffed bookcase and came to a shelf of gardening books. I realized that while our yard is lovely due to regular visits from yard care professionals and co-vegetable gardening with another family, my days as a gardener are behind me. It is probably at least two years since I had opened any of these books. It was time to find new homes for most of them. By the end of our sorting I plan to only keep three of them.
On a later shelf, I came to the last of my professional editing books. A few years back I parted with my science editing library. These remaining books were a set of style manuals and a few favorite books on the art of writing. Again I realized it was at least 3 years, if not more, since I had looked at them. It felt like they were from another life. Time for them to go.
I am trying to squarely face the losses in my life while also simplifying what is around me to make life as easy as possible to live. It was relatively easy to put the books in the 'go' pile. It is a much harder thing to accept that the roles of editor and gardener are no longer on my life resume.

Thursday, August 29, 2013

Dream outshines Reality

After six years, one would think dreams about my beloved career as an administrator of a science research unit would fade. But, a couple nights ago, the siren song of dreams beckoned. In it, a colleague phoned and asked me to lunch. Once I arrived it was to find a panel of faculty; some I knew and some new to me. The purpose of the lunch was to ask me to return to work to lead the administrative efforts for a new institute. I smiled politely, feeling my usual mix of frustration and invisibility when someone means well but doesn't seem to see “ME.” {That is the wheelchair, the chronic pain, the cognitive decline, the shortened life span, and all that goes with progressive forms of MS} As is the nature of dreams every obstacle I raised was met with well-thought out answers, "we have already spoken to your doctors and arranged your schedule to work from home," "we are hiring an executive assistant to be your eyes and ears," "we don't want what your body can do, just the knowledge and skills that you possess." The overriding theme was that they first saw me as a person with valuable skills and abilities and second as a sick disabled woman whose needs could be managed by administrative steps. 
Reality is a much different kettle of fish. More and more I am seen and treated as a rather child-like marginalized patient who needs to be told how to live. If I mention to a receptionist to repeat details due to my cognitive issues they often switch to a sing song voice and baby talk. Yesterday, at the 11th hour, I cancelled a visit with an elder from my church who I have not met. I apologized for the last minute, said afternoons are tough for me, and that my aide would call him back to reschedule because I have trouble with dates. In what I heard as a condescending voice, he replied, "Let's not forget to take my schedule into account too!" 
Yes let us not forget. That what a well person can do in seconds takes me hours. That a 45 minute trip to the grocery lands me in bed for 3 hours. That all the time, every minute, my arms burn and ache and every movement makes it that much worse. That I can no longer follow simple recipes, write down phone numbers, or remember that you called. 
Most of all, let us not forget that all of the layers of challenge that MS has layered on hasn't changed my personality or my professional knowledge or my social graces.
Too bad I can't go back to work, but then that was just a dream.

Friday, August 9, 2013

Update after almost 6 months of Silence

This year is about hunkering down and surviving (maybe I should change my name to Katrina?).
Since February, when I was hospitalized for a major MS exacerbation that included kidney failure, tanked sodium and potassium and the resulting brain and body firestorm, I have fought and continue to face major challenges.
Here is a summary and an update for those who have wondered, and emailed, and prayed for my recovery.

I'll start with what started it all, surgery last October to address neurogenic bladder and bowel. I now have had a second surgery to re-site the stoma on my abdomen for the urostomy bag. It still isn't working quite right and, unbelievably, a third surgery is a possibility. 

Physically, MS is taking an aggressive stance. In the past nine months, I've lost another chunk of function on my right side and can no longer transfer independently. Fatigue is a raging beast while nerve pain is its invisible twin lurking in the background. I have a nerve-pain syndrome in my arms that stretches from bicep to finger tip, I call it debutante pain since it mirrors the ubiquitous white gloves. The pain is burning and squeezing and constant. Any use of my hands or arms increases the pain. So the activities that bring me joy; reading books, writing, crafting, also bring severe pain. Quite the conundrum.

I have stabilized the weight loss. The diagnosis of neurogenic stomach was made through a  process of elimination and food is something I do like taking pills or brushing my teeth. But, an excellent medical dietitian taught us how to get in enough calories to stop the precipitous weight drop. Cross my fingers that I can keep this one thing under control. 

Another area that is taking a big hit is cognition. MS is a brutal task master in this area. I have had regular cognitive work ups for the past 13 years. This past December showed acceleration in several areas and marked increase in an area that was clear before. This was before the sodium-drained brain fry in February. And this and that drug for this and that affliction. I can't seem to read much beyond the simplest books. I lose the threads on the simplest things. If one more person laughs it off as 'middle-aged' I can't promise I will stop screaming.

My world is reduced is to my home, my hospital bed, a few dear friends, and family. Hopefully as I claw my way past this last surgery (please, please, be the last hospitalization for awhile), I can start to build and find a little more joy in the day to day. That is my goal for now. 

My fabulous son moved across the country and up the highway by about two hours. If nothing else will make me smile. Tonight at the train station, that should.

Monday, April 15, 2013

Wasting Away

I am afraid that this latest hand of cards MS dealt will, quite literally, kill me. Sit up and pay attention when a fat lady tells you she is going to starve to death. Mostly, when I say it, I encounter a few polite pulses of silence and then the person struggles to find a politically correct way to point out that the obese aren't exactly poster children for starvation. 
This is my reality. In the past 23 weeks I have lost 70 pounds. If I continue at this rate, and so far no medical reason exists to believe otherwise, by August I could be down another 30 to 50 pounds. Problem? What is the problem with this? Isn't being thin the holy grail to which all humans would automatically improve their lives by attaining? 
Let me back up and check my sarcasm and anger at the door. The truth is over the weekend my hubbie and I were refused treatment at the local hospital and sent home to self manage this frightening stomach condition. Every 15 minutes to 2 hours I have spells of retching and dry heaves that are so painful they cause me to cry out.  It feels as if a stalactite of ice pierces my belly. I have no safety net. No plan B. My current daily calorie count is 200-400. The doctor who diagnosed me says neurogenic stomach {info on MS/Bowel) is not treatable and so he doesn't need to see me again. I called the National MS Society. They don't even keep a list of gastroenterologists who treat MS patients. 
The physical therapist and medical nutritionist I consult with set 180 pounds as the threshold I don't want to cross. Essentially, saying that much like a sink-hole in Florida, once I start the slide toward 100 pounds it is near to impossible to put on the nutritional brakes. As if I might crest one of the giant sand dunes at the Oregon coast and tumble pell mell down the far side. So that is how a fat woman can starve to death. She finds herself with a team of doctors who don't seem to have the first clue how to arrest or address, let alone treat, her.  She finds herself in a culture that objectifies women and bodies to such a point that her physical agony is almost seen as worth the price of admission to the thin world.
So I find myself living with fear. How many days before a lack of calories and water causes my body to shut down? What will we do then? The urgency is a creeping malaise that seems to seep into our very pores. As we learned in February, I can go from everyday sick to critical in the blink of an eye. 
What can we do, where do we go, how do we respond when the medical system has failed us and we are alone in the fight our our lives. 
Want to help? Email John or Janine

Saturday, March 30, 2013

Back From the Land of the Dead

I truly never expected to celebrate the 10-year milestone of my 'deathiversary' with a precipitous slide down the rabbit hole. The debate of IF MS could kill was answered in swift, startlingly swift, clarity on February 12th. The previous week I was in the local small hospital for an IV steroid treatment and antibiotics for a urinary tract infection. Overcrowding, poor doctoring, and who knows what all led to way underdiagnosing; and just like that my husband finds me on the floor in a pool of feces. Nonresponsive. Almost gone. Kidneys shut down. Brain on Fire. Death. Right there in the room.
Ten years ago, when neurologists first told me that I had a more aggressive form of MS; that it was 'life shortening,' and I should plan for 10 to 15 years. The rest of the conversation blurred out as my brain 'did the life math.' My son was 11 at that no rehearsal dinner, no dandling grandchildren, no purple hat society. The home movie of the life I wouldn't have played in my mind. As I blurred back into the room and realized the neurologist had tossed this nitroglycerin news into the middle of the conversation and moved on. Over the interceding years I imagined a lingering, fainting couch sort of end to my life on this earth. Certainly not this lightening strike infection that simply scooped the life out of me in one fell swoop.
For 36 hours after my hubbie found me was a very sick girl and sometime on Valentine's Day I started to know the faces of a few people around me over the next 10 days I began to live again. Over the past weeks I have even started to want to. More MS losses to add to the list. My right leg has finally given in and now I have losses in all four limbs. Scariest of all are the cognitive losses. My short-term memory is peppered with buck shot and most of the time it feels like my brain is filled with a sticky syrup that keeps me from thinking completely. Now that I know the truth about MS and death, am I ready to meet the challenge and live life as fully and completely as I can in the time I have life?

Sunday, January 27, 2013

Weighty Issues

I always love the part of fantasy sagas where the protagonist encounters a riddle or puzzle that seems unsolvable and then, Voila, an answer is cleverly determined and the next stage of the journey is revealed. A classic example of this is found in the Lord of the Rings trilogy in the scene with the sealed door, the monster in the lake, and finally, inspiration, the door swings open and the band of travelers is saved. I am in need of such clever insight, magic incantations, and clarity myself right now.
Since the failed bladder reroute surgery this past October my life is more topsy-turvy than anything else. I've written posts about it on this blog. To be truthful I am sick to death of living with the constant struggle of bag failures, urine soaked bedding and clothes, and having to lie still. The big problem: no the obese problem is what to do to repair the surgery that didn't work.
The surgeon is a great doctor. But, like many many many people he has a tremendous bias against the obese. And is incapable of factoring MS disability into the mix. He owns up to his own error in not doing a preoperative scan of my abdomen that would have prevented this entire mess. But that is looking backward. His solution now? Is for me to lose and forever maintain a total weight loss of at least 100lbs. He says with a supercilious smile, "If you want it badly enough, sacrifices will have to be made." and later in the conversation, "I see a 5'4" 125lb woman inside your body."
I have lived my entire adult life as a fat woman in a world that thinks less of me based on one glance. No one who isn't fat can begin to comprehend what that is like. No one who isn't fat can imagine the Sisyphean struggle that plays out nakedly on a public stage with every attempt to change. The kudos when you lose, the silent contempt when you fail. I was training to walk the Portland Marathon when MS hit the hardest. I still grieve that loss. For the past 12 years I have waged an epic battle with a personal trainer to try to have some type of exercise in my life. Our every attempt has failed as MS has chipped away my body's ability to function. I 'fatigue out' after three reps of the simplest motion. Cardio is a thing of the past. And my weight creeps up.
Now that something has happened to my ability to eat I am experiencing a precipitous drop in weight. Forty six pounds in nine weeks isn't cause for celebration. Something is wrong. I saw a gastro-interologist last week and he is suspicious that I have developed a MS exacerbation-based neurogenic stomach and my inability to eat might be permanent. The urologist seemed almost giddy because now the weight would come off for sure. I tried to explain that this didn't seem like any way to live and he made the comment that losing the ability to enjoy food would be harder on me because clearly, "I take more comfort from food than others."
The seemingly unsolvable riddle for me is this: if I agree to the revision surgery based on the weight loss that was caused by this mysterious inability to eat (my daily caloric intake is between 250 and 450)...and at some point in the future my ability to eat and taste food returns...can I maintain the weight loss? For a completely sedentary person, according to several medical web sites, I would need to eat 1,000 calories a day. Here is a sample menu, could any of you do this for the rest of your lives, just for the honor of peeing into a bag and being thin?
Breakfast: Coffee with artificial sweetener, 3/4 cup blackberries, 2 scrambled egg whites, 1 corn tortilla
Lunch: 2 cups low-sodium vegetable soup, 3 oz. chicken to add to soup, 1 small pear, 1 cup light yogurt, 12 oz. water

Dinner: 4 oz. grilled salmon, 1 small corn on the cob, 1 cup steam cauliflower, 1 cup cantaloupe, 16 oz. water 
So, what other choices do I have? I can have the surgery with a doctor who doesn't seem to see me. I can have the surgery reversed and go back to a Foley catheter. I can leave things the way they are and be wet and miserable. All the while marinating in the awful reality that MS may have taken away my ability to eat.
Or I just don't know. Maybe if I sit a while longer on the shores of this lake inspiration will strike before the MonSter pounces again. At the least, maybe one person reading this will think twice before being so quick to judge and find wanting the next fat person they see.

Tuesday, January 15, 2013

She Said No

Life is heaping disappointment upon disappointment like a cave-in where the sand is pouring in faster than the rescuers can dig the trapped one out. I have a well-earned reputation for solving problems, being creative, slaying dragons. This time, too many areas are all coming apart at once and I don't seem to have the wherewithal to deal with even one of them any more. And if I come apart at the seams I am not sure that I can ever be stitched back together.
My afternoon caregiver gave her notice last week. She is the cornerstone of my home care. Knows the mechanisms of my urostomy, meds, etc. like no one else. Takes great care of me. Losing her reveals the tremendous vulnerability I have depending on caregivers. They have their own lives to live-as it should be. I found a new caregiver, but she faces a 10-week State approval process. So, what to do. My options seem to be reduced to either a rotating door of faceless untrained temps or foster/nursing home care for two months. Then like a breath of fresh air, a relative offered to pay for her daycare, if she would agree to stay. Today, she said no. 
I am so alone. No disrespect to all of you who love me, who visit, who pray, who give respite, {the list is endless}. But at the end of the day you each go home to your own list of joys and sorrows and lives to lead. As it should be.
Somehow I have to scrape together enough disparate pieces to make a life worth living out what seems like dribs and drabs of old paint too inadequate to cover a weathered barn. My doctors can't seem to be bothered; my MS seems to be winning; my missing appetite seems to get worse [46 pounds in 8wks]; my soul seems as dry as a wheat field in winter. Every time hope wends its way in, it seems to wither. She said No.
Now what do I do?

Monday, January 7, 2013

Best Post Comment Ever: In 3D No Less

Alien Food
Thanks to Sasha, Kaylee, and Mark for the 3D display of empathy
and insight
into the mystery of my off-kilter eating problem.
To explain a little further: (for an explanation of the "alien food" The ongoing roller coaster of MS and surgery recovery is unrelenting. I noticed over the past couple of days that the caecostomy tube that I have to regulate bowel function, which usually is about 6" long, was slowly retracting into my abdomen. By yesterday it had pulled most of the way in until the end of it was close to the opening. Suddenly the large cap jerked partway in and the pain was excruciating. To make a long day at the ER and the Interventional Radiation Lab into a shorter story: all was finally home late in the evening and I returned home tired, in less pain, and further battered by this worn out body of mine.
Imagine my amazement and delight to discover that one of my dearest friends who I rarely see any more what with her demanding careers, toddler, etc. etc. etc. and my whole gunky mess, had somehow taken the inarticulate words from my previous post and turned them into the perfect 3D representation of this life-draining mess that is my loss of ability to eat. It is quirky. It shows what I cannot seem to say adequately for others to understand. It makes me want to laugh. It makes me want to cry. I am having a 4x6 printed for my doctors. And, either Dr. Seuss or Tim Burton may have met their match or secretly let one of their more darling creatures loose in the dear and lovely Sasha. Thank you, thank you, thank you!