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!