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 tortillaSo, 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.
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
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.