Friday, September 10, 2010

Weight Part 9

Ellen returned from vacation. It's been three weeks since I last saw her, so we did a lot of catching up, mostly. However, I said out loud what I've been trying not to say or even think for a few weeks. I am swimming. I am eating fruits and vegetables (albeit overcooked and mushy). I cut out even the fat free muffin for lunch. There is very little left in my diet to cut. Yes, I have a bagel with egg and cheese for breakfast, and I have a little frozen yogurt or a few Snackwells after dinner. But there is no way I should not be losing SOME weight. And I'm not.

Which makes it a medical issue. Which totally sucks.

I've been to nutritionists, dieticians, diet doctors galore over my lifetime. I have NEVER before started a diet and not dropped a quick 10-20 pounds. Even if I am not eating the smallest amount humanly possible, I've greatly decreased my caloric intake and increased my exercise. Something should be happening.

Ellen says she thinks the first place is to look at my meds. I take 15 different prescription meds. Nobody on earth understands how this particular combination interacts. In fact, we don't even know which ones are helping and which ones could be cut -- when I was deathly ill in 2002 and started seeing my Crohn's expert in Manhattan, she pretty much put me on everything there is, and nobody wants to rock the boat because I'm stable now. So messing around with my meds means taking a risk. I probably will try cutting back on one at a time to see what causes symptoms. That's the only thing to do. And what if my meds -- meds that are working and keeping my disease under control -- make it that much harder to lose weight? What if? I can't even go there.

I'm trying really hard not to be discouraged. I don't feel down, really. But I'm frustrated -- and I loathe the thought of getting involved with doctors. Interaction with the medical world typically makes things worse before they get better. I can feel it coming -- an endocrinologist because maybe it's my metabolism; yet another nutritionist; weekly trips to New York to see a fancy diet doctor. I just don't have it in me to go down this road.

But I desperately want to lose weight because I'm uncomfortable. Even if I just lost 50 pounds, I would feel better and my clothes would fit better -- it would be less than perfect, but better than nothing.

The truth is that there's only one time in my life when I lost weight NOT because I was sick. I lived in Florida. I taught, so I worked my own hours. I swam for at least an hour a day -- twice as long as I swim now. And I ate anything I wanted but only once a day. I lost 120 pounds. I was tan and fit. I also wasn't on hardly any medicine. I didn't work 15 hours a day. I had energy to burn. There were plenty of other things wrong with my life; emotionally, spiritually I am a much healthier person now. But physically, I was healthier then. And I don't know how to recreate that when I get up at 4:30 in the morning and work until 8 pm, when I have the weight of so many patients on my mind, and when I have the pressure of raising over $200,000 per year. I don't know how to completely change my lifestyle. I don't know if Advocacy for Patients could exist if I did.

But perhaps this is the next step with Ellen. She said today that this was the first time in our nearly 20 year relationship when I was willing to make major changes in my life, i.e., my diet. Well, maybe I need to make some more changes. Maybe we have to upend the whole thing. Because, frankly, I'm tired of being tired, in pain, and overworked. I don't know any other way to do what I do -- but maybe I need to find out.

What I can tell you is that I'm not giving up. I do not want to live like this for the rest of my life. I want to enjoy life. I love my work most of the time, but I hate fundraising, and I hate how the whole thing weighs on me. I can't imagine a life in which career is not my top priority, and I've really done a number on myself by setting up an organization that cannot function at all without me. But maybe these, too, are some life changes that I have to have the courage to confront.

Whatever it takes. Really. Jennifer

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