Sunday, July 27, 2014

Now that I am Dying

My friends, over the past 16 months my body, mind, and soul have put up a valiant fight against MS. My soul is strong but my body and mind are failing.
Now that sounded pretty and noble, but it is all I can take of that. To put it in my own voice: I can't eat solid food-when I do I puke-so now we cadge together a gross mix of clarified butter ladened broth (bless those church ladies) and diluted fruit beverages. The official diagnosis? Who, in the MS Alice-down-the-rabbit-hole world, expects that. My GI has ruled out all common disorders so that leaves little left but MS caused neurogenic stomach, where the small muscles of the stomach and the micro nerves that control them are affected by MS-but he won't diagnose that because no definitive test exists. About 21 days ago, this syndrome traveled further up my digestive track and settled somewhere in my stomach sphincter or just below the esophagus. Now I live with the vomiting and the weight loss and the pain. Oh, did I forget to mention the pain? Whoever called this symptom an MS Hug was sadistic. I have a band about 12 inches wide around my mid section from breast to belly that grinds and twists with unrelenting fervor. And a spike of nerve pain that hits right below my breast bone with chillingly irregular regularity. Also a visceral nausea that makes drinking anything other than water a battle of mind over matter. Akin to mild car sickness all the time, that can tip to severe at any trigger.
Pain is so familiar now, I no longer remember me without it. 

  • my arms from biceps to fingertip are strangled, day and night, by a burning constricting pain that worsens as I use them. I have charlie horses and tendon pulls that curl my arms and hands into terrible shapes. Typing this will cost me heavily for the next several hours.
  • the right side of my skull leading to my eye...the track of the occipital nerve serves as a channel for a burning hot pain that finds its center in stabbing pain in my eye. Light and busyness can trigger this pain or make it worse. This pain at some level is with me, always.
  • my legs are riddled with areas that cramp up, curl into rigid shapes, and have stabbing electrical pains.
  • the joints of my ankles and toes, from years of being out of position from weakness, and now from spasming and twisting, have chronic bone, ligament, and tendon pain.
Too many others to list. But chronic plain is such a pale tea to describe the stagnant bile I sip every day.
And yet, somehow, my soul flourishes. As I come to the last weeks of my life during my 49th year, instead of anger or rage or drips of acidic futility I look with joy at photos of my boy and the years of his life he spent with me. I hold my husband's hand and our voices meld remembering so much from the past 27 years. We lived deliberately. When we learned 11 yrs ago and then it was confirmed several years later by a second neurologist, that the lifespan for my type of MS is 10 to 15 years. We didn't fold up our tent, and quit living. I worked at a beloved career for many years well past the 'norm.' Five years ago, we took our son to Hawaii, a vacation we couldn't afford to miss. To this day, as my days are winding down, I choose to have as full a life as I can.
My world is super glued together by a 30 plus year faith in God that sweetens all the darkest places.
I will write as much as I am able in the coming weeks. Hopefully, my old blog-world friends haven't left me.
I will share the plan for what is next in a future post.  


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.