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Wednesday, March 25, 2009

Half Way Through the Lose-a-Thon

This week marks the half-way point. Instead of my usual entry, I'd like to imagine what it would be like to live with Prader Willi Syndrome and please consider making a tax-deductible donation.

What it would be like if you were born with Prader-Willi syndromeBy Teresa Kellerman of Tuscon, Arizona

Imagine that your desire to get food is so strong that you would do ANYTHING to get it, even crawl out of your bedroom window in the middle of the night to walk to the store several miles away.

Imagine that you are hungry all the time, and that you are on a diet, all the time, and that you can only eat about half as much as everybody else, not to lose weight, but just so you don’t gain weight.

Imagine that if you do gain weight, you will have to go on an even stricter diet, getting about asmany calories in one day as there are in just one cheeseburger and fries. Boy, would you like to have a cheeseburger and fries! But that’s not in your diet. You are told that your diet is very important, because if you gain weight you could get really sick and die, because your heart can’t handle the burden of obesity.

Imagine that everybody in your group is going on a hike, and you want to go, but you know you will get tired easily, because your muscle tone is not really good, but you don’t want to be left behind, so you go along, and it’s really hard for you to keep up with everybody. And when you stop for lunch, the person next to you has a big sandwich with mayonnaise and cheese and roast beef and five cookies and potato chips, and the person sitting on the other side of you has three granola bars and trail mix with nuts and a candy bar. And you have two skinny slices of diet bread with mustard and a thin slice of ham, and a rice cake, and a teeny apple. You think that candy bar looks really good, and you watch that candy bar, because maybe it will get set down, and maybe you can get your hands on it, and maybe it would taste so good, and you can’t think about anything else but that candy bar.

Imagine that you find a $20 bill laying on the ground, and you pick it up and put it in your pocketand don’t tell anybody, because maybe you can buy some candy bars with it some time when no one is looking. But you get found out and you are accused of stealing, and nobody believes that you just found it.

Imagine that when you see a little scab on your arm, you just have to scratch it, you can’t help it, you just have to! And when it bleeds, you get in trouble. And you try really hard to leave it alone, but you can’t! And sometimes it takes over a year for sores to heal.

Imagine that when you want something to eat you have to ASK, and then you usually get told NO or you get carrot sticks, and you can’t eat what you want because there is a lock on the refrigerator and on the pantry, too. But you know if there were no locks, you would get more food, and gain weight and get sick. So you really don’t mind if the food is locked up. At least you don’t have to worry about getting food like you used to before there were locks, and you would wait until the middle of the night to get up and go get food without anyone knowing. You feel safe with the food locked up.

Imagine that there’s something you like to do and you’re really good at it, like working jigsawpuzzles. And you have one that is a THOUSAND pieces, and you’ve been working on it for days, and you want to put it together all by yourself, because it’s YOUR puzzle and you know where all the pieces go, and then someone else puts pieces in for you, and you take it all apart to start over, and you get yelled at, and you are told you are STUBBORN, but it’s YOUR puzzle, and you just want to work it yourself.

Imagine that you are going to the movies, and everybody else is getting popcorn and candy, but you can only have a diet pop, but you have to sit there and smell everybody else’s popcorn and chocolate, and watch them eat, and hear them munch. You really wish you could have a giant tub of popcorn like that guy over there! And you see a piece of popcorn that someone dropped and you pick it up and someone tries to grab it from you but you are faster than they are and you eat it, and they get mad at you, but it was worth it because that one little piece tasted so good. Better than the air-popped stuff.

Imagine that you have a hard time expressing your feelings and you get mad easily, but only when things aren’t fair. Only when someone breaks a promise. Only when you’re not getting what you think you need or deserve. Imagine that when you can’t say what you want to say you scream and hit. You wonder why you get in trouble for hollering when everybody else is hollering too! Or sometimes you just sit and REFUSE, and nobody can make you move. You know you feel better when you take your medicine, but you don’t want to take your medicine. You don’t know why, you just don’t want to take it. When you refuse to take your medicine, you get in trouble. But when someone in charge forgets to give you your medicine and you lose control, then you are the one who gets in trouble.

Imagine that you have family and friends who understand you. Imagine that your teacher, your case manager, your care provider, your doctor, all understand PWS. They know you are different, but they know you are special, too. Imagine how lucky you would be!

Note: Teresa Kellerman is the mother of Karie, who has PWS.

Prader-Willi syndrome (PWS) is a birth defect first identified in 1956 by Swiss doctors A Prader, H. Willi, and A. Labhart. There are no known reasons for the genetic accident that causes this lifelong condition which affects appetite, growth, metabolism, cognitive functioning, and behavior. The Prader-Willi Syndrome Association (USA) was organized in 1975 to provide a resource for education and information about PWS and support for families and caregivers. PWSA(USA) is supported solely by memberships and tax-deductible contributions.


Tuesday, March 17, 2009

Week 10 - A Quick Update

I don't really have much to say this week. I'm keeping up with my routine (minus a minor melt down last weekend) and I'm grateful I lost a pound this week! Next week marks the halfway way point in the lose-a-thon and I haven't lost half the weight I planned to. I know I'm doing the right things and I will continue to. I'm dedicated to this cause, as I've explained, for many reasons.

I want to take a moment and thank those of you who have sent me comments and who have made donations already. I know there are some of you who would prefer to sponsor me on a per pound basis; thank you to those of you who have made those pledges to me. If you'd like, I can post your pledge on my website, so you too can receive recognition for your donation. I'm grateful to each of you who are following my journey and who have made or will be making donations to the Prader Willi Syndrome Association. Remember, it's easy to donate via You can use your debit or credit card and the donation is completely tax deductible.

I'll leave it at that for this week. I'm continuing to increase my workouts and hopefully, I'll have even more pounds to report next week--I'd like to be bit closer to the halfway point. Thanks again!

Week 10 = 173 (-17 total)

Tuesday, March 10, 2009

Week 9 - What Else Can I Do?

I don’t know what to say…last week was a success on several levels. I worked harder than I have to date. I worked out every day but one. I walked, I swam, I dug a giant tree stump out of the ground, I leveled earth with a shovel and hoe, I did housework, I played with my sons. I was very active. That was great!

I also kept to my commitment of honoring Cainan and sticking to a regimented eating plan. There were times when I was hungry, times when I did not want the things I had already prepared for myself, but I did not give myself the option of going out and buying something else. I ate what I prepared. I accepted the hunger, knowing Cainan lives with it every day. I stayed on course until Sunday evening, when we both splurged on some pizza and a big salad.

Even so, with all that activity and reduced calories, I didn’t lose an ounce. I’m really perplexed. I know there are plateaus in weight loss—I’ve been on one for the last month now—but I always thought there were reasons for them; not enough exercise, not eating right, etc. I though if I changed up my routine and restructured my eating I would be able to kick this weight loss back into gear. I don’t know why it hasn’t happened.

I know I’m more active now than I have been in a year and I also know I’m not eating more than I did when I was sedentary (in fact, I’m eating considerably less calories)—so doesn’t it make sense that increased calorie burning and decreased calorie intake would equal weight loss? I don’t know how it’s possible that it doesn’t.

I’m going to keep at it. The only, only thing I can think of is that I am still building muscle, since a lot of the activity this week was not as aerobic and more strength training. Even so, hacking a tree stump and the earth for two and half hours straight should have burned a considerable amount of calories. But at some point, the muscle has got to help me start burning fat. I should be able to get to the other side of this plateau and started climbing down again in weight. I can’t keep expending this much energy and not see results—it’s not mathematically possible!

So this week, if you’re keeping up with this blog, please say a prayer for me. I need some encouragement. I know I’m doing the right things but it’s daunting to see the scale hover over the same numbers week after week. Thanks for your support!

Week 9 = 174 lbs (-16 total)

Monday, March 2, 2009

Week 8 - A New Commitment

Well, I feel like I’ve just wasted the last three weeks. Okay, not wasted, per se, but that I’ve just been spinning my wheels. I know I’ve drastically increased my activity. And as the weather continues to get better, that will only continue. I have a gazillion outdoor projects to work on and they all required copious amounts of physical labor. However, here I am, three weeks later, at the same weight I was three weeks ago.

Albeit, I did have to report a two pound gain last week, so it goes to say, that I have actually lost two pounds this week, but I’d be even further ahead if I hadn’t been spinning my wheels for those two weeks in between. Of course, Disneyland had a lot to do with that—but I can’t blame my indulgences at Disneyland for all of it. After all, my weight gain came the week after Disneyland.

I really am taking this seriously. I want to be healthier, slimmer and more fit. I want to have an intimate connection to Cainan’s struggle. While I am slowly getting slimmer and more fit, I don’t feel I’ve really committed to the lifestyle I need to meet my other two goals: I’m not eating as healthy as I should be, and I certainly can’t commiserate with Cainan. I’m still giving myself the option to eat what I want when I want, whenever I’m hungry.

So, this week I’m dedicating to Cainan. I’m laying out a meal plan for myself and I’m sticking to it. It’s very much like Cainan’s lifestyle. I prepare all his meals, with strict calorie content. He eats at regular intervals: breakfast, snack, lunch, snack, dinner, snack. He gets nothing else in between and he has very little choices when it comes to making the decisions about what he’s going to eat. As a result, Cainan continues to thrive and maintain a healthy weight.

Obviously, I know how to do it, I’m just not doing it for myself. That feels hypocritical since the major part of this lose-a-thon is to raise awareness for Prader Willi Syndrome and for me to understand on a personal level what Cainan goes through. Not to mention the fact that I’m setting a poor example for both my boys.

It’s not like I’m talking about a life of total depravation. I’ve really been blessed with the ability to cook and I take pride in the fact that while Cainan’s restricted to just 800-900 calories a day, he does not feel deprived. I prepared well-rounded, tasty meals, his snacks are often special treats like cookies, pudding, fruit, popcorn (thank goodness for 100 calorie packs). He really eats very well. There’s no reason why I shouldn’t be eating just like him—of course I know I require a few hundred more calories than that.

So, this week’s to Cainan. No over-indulgences. Planned meals with limited calories. Regular physical activity. I should have an even better report next week when it comes to weigh in and I’ll certainly feel better about myself for my efforts to do the right thing!

Week 8 = 174 pounds (-16 total)