I am a pretty strong person. When things go wrong, I quickly go in to fight and fix it mode. I also am a high achiever, driven, type A person who strives to overcome weaknesses and meet challenges head on. One of my biggest challenges is Policystic Ovary Syndrome (PCOS), a chronic condition which affects many women. It is treatable but not curable. It’s symptoms include irregular menstruation, infertility, pearl-like cysts covering the ovaries, insulin resistance, metabolic syndrome, hormonal imbalance, abnormal hair growth, inability to lose weight, inflammation, acne and skin tags, anxiety and depression.
It can lead to diabetes, heart disease, and obesity.Many with PCOS also have thyroid issues, Hashimoto’s, gluten and dairy intolerance.
When I was a young I showed the signs of extreme hunger, a large appetite, extreme mood swings, anxiety, acne and early puberty. I began dieting at age nine and was a lifetime member of Weight Watchers in 7th grade. I was always self conscious about my weight and became fanatical about counting calories and exercising. I would eat a can of spinach as my after school snack, work out two hours a day and even bring my own Weight Watchers frozen pizza to a slumber party while the others had Dominoes.
A regimen of dieting from a young age and being very active in many sports enabled me to keep the weight off. But I still never saw myself as skinny. Looking back at pictures, I was actually in great shape! But I fought for it. I gained a little in the college years, but was still healthy, exercising, and watching my diet like a hawk. The mood swings and anxiety did increase during my college years with the stress of school and relationships.
With discipline, dieting and a lot of exercise, I was able to maintain a healthy weight until I got pregnant with my first child. During the pregnancy, I gained 45 pounds in the first two trimesters and then had her ten weeks early as a preemie in September 2001.
It took a few years for that weight to come off and seven years for me to have another child. During that time, I had a miscarriage. After my miscarriage, I was diagnosed with PCOS. I finally had a reason why I could look at food and immediately gain 5-8 pounds in a weekend, but it would take every ounce of preparation and discipline, and several months, to drop that same weekend weight gain. It explained why I was hungry all of the time and had troubles with acne and abnormal hair growth.
I was prescribed Metformin, a drug to treat diabetes, that is effective in many with PCOS in regulating testosterone levels and reducing other symptoms. I found a low carb, low sugar, low fat, low calorie weight loss program called Quick Weight Loss and over six to eight months lost 45 pounds! I was in the best shape I had been since I got married and my symptoms decreased. With the help of fertility medications, I finally found out I was pregnant again in December of 2007.
During this pregnancy, I gained 65 pounds! It just seemed to pour on. I also had severe edema. After my daughter was born, they gave me a powerful diuretic to address the edema and I lost 20 pounds in one day! But sadly, I did not lose the other 45 pounds before getting pregnant again in November 2009. I only gained about 20 pounds during my third pregnancy and after my baby boy was born in July 2010, I was able to drop a little weight, but the excess 30 or so pounds I was carrying would not budge.
So for the past six years, I have tried everything to get the weight off. I have seen trainers and nutritionists. I have bought books, supplements, shakes and systems. I’d lose 20 on a very restrictive diet and gain it right back to what seemed to be a set point. Then the set point jumped up another ten pounds, and in the past few months it has jumped another ten pounds! I’m now 50 lbs overweight and it won’t budge.
During the past 90 days, I participated in a challenge. I tracked and turned in my food log, focused on a set number of calories and activity based on my basal metabolic rate. I tracked my food with My Fitness Pal. Each day, the app said I should be losing and each day the scale didn’t budge or worse, it went up. Two dietitians said I needed to eat more! BUT when I added 200-300 calories, I gained.
I exercise several times a week and my body has only gotten bigger and more jiggly, especially in the tummy. I am always hungry and always craving foods. This is due to hormonal imbalance, insulin resistance and issues with Grehlin and Leptin (hormones that regulate hunger and fullness)
My skin has changed recently too, with more acne and skin tags and even the texture has changed. I am tired and fatigued. My body aches and I feel like I’m nine months pregnant. I hate having these weaknesses!
It is not as simple as eat less, move more. It doesn’t work people!!!!! And I’m sick of crazy fad, restrictive diets, and spending money on crazy schemes. I want a real solution. I just don’t know how to sort through all the information and clutter to make a practical plan. I mean I have been dieting since I was nine and read all the books. I feel like I have a PHD in dieting, but I still haven’t been able to make it work for me.
I recently went to the doctor and the ironic thing is that he said I actually need to reduce my caloric intake, not increase it as the nutritionists said. Crazy as it seems, people with PCOS can be extremely resistant to weight loss. He said that it would require 20% less calories than the average person trying to lose weight to get the same results. And the Glycemic load, sugar and carbs will have a significant effect on my ability to lose.
I must eat whole foods that are primarily veggies and lean proteins, and have a low Gylcemic load. Many people with PCOS are sensitive to gluten and dairy, so I need to eliminate these foods. The discipline and will power and planning it takes for nutrition to be spot on is overwhelming.
I also must reduce stress and get more sleep (working mom of three, with three dogs and a child with a disability who keeps me on high alert, makes it difficult to relax or sleep). I am trying to be more realistic with schedules and commitments to reduce stress in our crazy lives. I am trying to listen when my body says rest, which is very hard for this Type A person to do. Being still is not a strength of mine. I like to always be accomplishing something.
Summer is here and I dread going to the pool, in worse shape than I was last year. I am not the person inside that I look like outside. I want the woman on the inside to get out!!!!
I know to manage this I must almost become fanatical again. Planning meals and packing food wherever I go to ensure the right nutrients, getting enough sleep and the right kind of exercise, taking vitamins and minerals every day and not giving in to temptations for sugary things. It means I must be different and always have a plan or alternative food ready for situations where I cannot control the food available, such as business meetings and travel.
It won’t be easy, in fact, when I was first diagnosed and working on my eating and nutrition, I was very serious about controlling my environment and temptations. An employee was getting married and the team had a party for him at a pizza place. Knowing the options would be few, and the temptation would be large, I declined to come. That decision had professional implications I would later regret. However, if I was an alcoholic, no one would blame me for not attending a party at a bar. It takes self advocacy for others to realize the seriousness of the condition and its challenges.
It is a real and daily challenge I face. It’s my biggest struggle. It totally sucks. And it is important I get on top of my health for my kids. They depend on me. It is a journey that I will likely be on for life.
My day began with advocacy at the GA Capital where I met with other families and self-advocates who are part of the Down Syndrome Association of Atlanta. We were greeted that morning by House Representative Scott Hilton and a Representative from Athens. Scott showed us a sneak peek at a declaration signed by Gov.Deal declaring it Down Syndrome Day in Georgia. We then scurried across the street to the Capitol building to be ready for a photo op with the Governor. I was able to shake Governor Deal’s hand and thank him for the support. Afterward, we were ushered to the gallery of the House chamber to hear Scott present the declaration on the House floor.
Later, I attended a “3/21 Over 21 event” where I was very moved by the presentations of three young adults with Down syndrome. One has been married for 14 years, has a job at a local hospital and lives a fulfilling life; another young man lives in his own apartment with a roommate, has had the same job for 20 years and is very active in the community; and another young man is graduating from college with a degree in exercise science and wants to be a trainer. They each gave me so much hope and anticipation for Joey’s future. It was truly amazing. 
