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

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 time...so 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?