Living with Chronic Pain and Pushing the Limits – Holley’s Journey

Holley has been a long time member of EM2WL and is living with chronic pain. Her struggle with an eating disorder and health issues with Ehlers-Danlos Syndrome are what pushed her to seek a permanent way of eating, so she can be as healthy and as happy as she can. 

Dieting and Self Esteem as a Teenager

As a child, I always weighed between 10-20 pounds more than my peers. Looking back, I was not a fat child. I was athletic, dancing 8 hours a week in addition to gym in school and active weekends. However, due to my weight, doctors were constantly encouraging me to eat less. I remember being accused of using too much dressing on my salads at age 12 and given a 2T measuring cup by my pediatrician. I was very confused. I hated salad.

Fast forward to puberty when my weight continued to climb, though again, I was not fat. Just a normal growing child with an athletic butt and thighs because I danced. I broke both of my feet one after the other when I was 14. I couldn’t carry my own lunch tray and I was paranoid of getting fat because it was all the doctors and my parents worried about when I couldn’t exercise. So I lived off of the saltine crackers I could carry in my pockets at school. That’s really when my eating disorder began. I was praised by everyone for not gaining weight while “laid up” with my broken feet, despite the fact that I used crutches and burned a TON of calories getting around.

I was forced onto the Atkins diet at age 15 as an athlete playing field hockey 6 days a week and dancing 8 hours a week. I was miserable. I cried for carbs so much that I was eventually allowed to eat a cup of unseasoned oatmeal at breakfast, half a banana at a snack, and a cup of rice with a teaspoon of soy sauce. I still cannot eat cold meat due to choking them down as a snack daily. This complicates things when it would be best for me to pack a lunch in a cooler. I just cannot. Blech!

I yoyo dieted through high school essentially as commanded by my mother. I was constantly bullied by my parents and brother for my weight. Keep in mind, though I had a large frame, I was still not fat. I was very muscular and looked like I weighed 20 lbs less than I actually did. Any time I saw a new doctor, I was told I “carry my weight well”. I always thought it was a rude comment considering they then told me to lose weight. I frequently rebelled and “binged” on chips, ice cream, and brownies. Though looking back, it wasn’t much of a binge. The worst diet I think I did was a bite diet. I only got 9 bites at lunch or dinner of the main dish, I think 5 bites of sides, and 3 of dessert. It went as terrible as you can imagine.

When I was 17, I badly injured my SI joints doing shot put and discus. I was always the strongest girl in summer boot camp type classes, so the coach recruited me for track & field. I couldn’t run much because my feet still hurt from being broken several times throughout childhood despite the fact that they were fully healed. No one believed me that they (and my hip) still hurt. I kept asking why things still hurt if they had healed but there were no answers.

Fear and Eating Disorders

When I finally got away from my family in college, I decided to go back to starving myself, which was something I did off and on to lose weight in high school when the comments got to be too much. I ate very little, got down to my lowest adult weight of 180 lbs and was a very unhealthy size 10/12. I was miserable. To make matters worse, my sophomore year of college, I broke another foot in dance class doing a triple pirouette. I was terrified of getting “fat” again. My parents told me I better not regain all the weight I’d lost, which was actually only 20 lbs. They didn’t know that.

I weighed in every morning and if I weighed the same, I could eat a little bit that day. If not, I would eat next to nothing. If I ate breakfast, it was a mini bagel and black coffee. Dinner was a cup of lettuce with 1T of oil and vinegar dressing. Eventually, I would break down and “binge” on what I now realize was a normal sized meal from Steak n Shake or fast food. I ate regularly when my parents were in town visiting. I was always hungry and learned to ignore it. During this time, I studied two instruments (voice & piano), took an extra course load every semester, and did a lot more activities than most college students. By my senior year, I was exhausted and suffering from ocular migraines daily. I also injured my left shoulder my freshman year of college. The foot pain and hip pain still continued. I was also having major problems digesting food.

When I moved back home after college, I continued searching for a diet that would work for me. I started eating slightly more regularly, but always ignored hunger and ate in a very disordered manner. I continued having problems with various joints and pain. The chiropractor I had been seeing since I was 17 didn’t have any answers for me. I saw him as regularly as I could afford in an attempt to get my body to hold itself together. I kept asking why no one else had to get their entire spine realigned when they’d held music at a concert all weekend. I just wanted to be normal.

After I got married in 2011, I was ashamed of my wedding pictures. I had regained the weight from college and a tiny bit more, but only gained a dress size because I had started weight lifting regularly. This prompted me to join a weight loss study conducted by a major university in January 2012. I was put on a 1200 calorie a day diet for 14 weeks. This was the first time in my life that I ever ate consistently. At age 25. I’m still appalled at myself! At this point, I was singing almost every night, working three different jobs seven days a week, and exercising almost every day. I weight lifted, did spin class and a few boot camp style classes. My body hurt all the time. I was experiencing symptoms of adrenal fatigue. At least one day a week, my body would shut down and I would be unable to move for a few hours. I referred to it as “crashing.” I thought it was normal for my crazy schedule.

During the weight loss study, we had to go through weekly meetings. Like food interventions almost. We were “educated” about calorie counting and “smart” food choices. In one meeting the instructor told us that we would have to count calories for the rest of our lives to keep the weight off. I knew immediately that she was wrong. If naturally skinny people didn’t track their calories, why should an overweight person? It made no sense. I was tracking on MFP and had started stumbling on EM2WL posts. I was determined to finish the study because I wanted them to learn from my struggle. Except for the long weekend when I was gone for a wedding, I stuck to the 1200 calories a day, ate about 1800 calories a day while out of town. The study included a DEXA scan at the beginning and at the end of the study. I weighed 226 lbs when I started and my lean body mass (LBM) was 117.3 lbs. I am 5’5”. I got down to 198 lbs by the end of the study and my LBM decreased to 109.7 lbs. So I lost 28 pounds and 7.6 pounds of that was muscle. I was so angry when I compared scans. People were so proud of my weight loss, but I felt like I might be dying. I could barely keep any food down. I had developed severe lactose intolerance and food aversions. I didn’t know it at the time, but I was headed from an EDNOS to orthorexia. I was terrified of processed foods, meat, dairy, gluten, potatoes, sugar, eggs, fruit…basically all food terrified me. I would often choose not to eat rather than try to figure out what I could eat that wouldn’t make me fat.

The Journey into Reset

The day the study was over I dove into a reset. I was eating vegan at the time and not too concerned with macros. After the standard 8 week reset, I did a cut. To be completely honest, I didn’t reset properly. I could not believe that I was burning over 3000 calories a day. My Fitbit and Body Media Fit didn’t account for calories burned while singing, so I know my TDEE was much higher than 3000. I only reset at about 2700, though I did occasionally eat up to 3200. I tracked every spice, drop of oil, and weighed everything. I was OBSESSED with MFP. If I ate less or more than planned at a meal, I was immediately on the app making adjustments. I felt out of control, yet I was super in control of my food intake. However, my digestive issues continued to get worse, so I walked away from EM2WL and everything. I stopped tracking. I kept exercising, completing NROL4W and taking Barre3 class regularly. I started Strong Lifts as well. While working out, I dislocated both shoulders on more than one occasion. (Overhead press is my nemesis to this day!) I still ate in a disordered manner and dabbled in a few diets, but I ate regularly. At one point, I worked with a fabulous dietician who helped me come to terms with my eating disorder and learn to eat regularly and meal plan. I had never learned how to plan a meal other than what I was hungry for. I still wasn’t eating enough, but I was eating. I gradually worked meat and some dairy back into my diet. I pretty much stopped eating processed foods because they increased my digestive problems. My gastroenterologist figured out I had severe acid reflux that probably requires surgery, but the surgery is very invasive and will have to be repeated. (I’ve still held off on that. Thank goodness new drugs come out every year that help keep it somewhat managed. To put it in perspective, I take 3-5 times the amount of acid reflux medication available in over-the-counter meds and it still doesn’t stop it. It takes me about half an hour to eat a meal because if I eat too quickly, I will puke it back up within minutes. I frequently regurgitate cold water that I just drank.)

A diagnosis of Ehlers-Danlos Syndrome and a path to healing

Then in November 2014, I broke my foot. For the fifth time. And everything changed. My ankle had given out as I maneuvered around my living room and I heard the bone snap. I wore a giant walking cast on my left leg for 10 weeks. My hips were constantly out of alignment by 3” or more. Moving any part of my body was agony. Unfortunately, the break was in a bad spot, so it took a long time to heal. The ER nurse who put the temporary cast on me had never seen my type of bone break without an ankle injury to accompany it, yet my ankle was fine. Eventually, I was released from the boot, but had to get custom-made orthotics. The woman who measured me for them asked me if I had EDS. I said, “What’s that?” She made me write it down and look it up. She couldn’t believe no one had ever looked into that for me. She said my body moved like someone with EDS. My joints being so flexible wasn’t normal and neither was my pain. Shortly after this, my sister was diagnosed with EDS and POTS. I’ve been diagnosed by my chiropractor, but there is no doctor where I live who treats it, though my doctors have done some research and are all familiar with it now. Knowing I’ve had it has been revolutionary. I have tools and an EDS community to go to if I have questions or need to commiserate. I am one of the lucky ones since I do not have heart issues yet. And my digestive issues are nothing compared to what some EDS people deal with!

After the bone in my foot had healed, my body was a mess. My SI joint instability was so appalling I was googling long term surgical solutions. My balance was completely gone from my time in the boot and weight lifting was out of the question. I started doing Pilates to get my body back in June 2015. I slowly lost the ability to feel and use my hands regularly. I finally saw a doctor about it in December 2015. By January 2016, I learned that I had to have surgery on both wrists and elbows in order to have a chance to use my arms normally again. The nerves in my wrists were dying and the ones in my elbows were headed in that direction. I was still eating regularly and trying to focus on good nutrition for the surgeries. I ate a lot of protein to promote healing for the second surgery and it went much better than the first. I was still demonizing food groups and choosing not to eat rather than choose something that was “bad” for me.

Coming to terms with an eating disorder

After my second surgery, I joined the very first CTDM workshop in Fall 2016. It changed my life. I learned to stop demonizing foods and just make a food choice already dang it! I also confronted myself about my past treatment of my body. I forgave myself. And started to work on my confidence. I broke two ribs midway through, but I got back into EM2WL for real this time. Kiki especially helped me come to terms with the fact that just because I have a genetic condition does not mean that I cannot eventually accomplish my goals.

She also helped me realize I could set flexible goals that varied based on the state of my body each day. It’s not an all or nothing life. So I forged ahead! I got back into tracking food on my own terms. I was barely eating 100 g of protein a day when I started working on it a year and a half ago. Now I get 160-200 g easily! The workshop also helped me figure out self-care things I could do for my EDS symptoms. It is SO IMPORTANT for me to be kind to my body when it is hurting, which is every day. So every day, I do something to help myself feel better. My heating pad is my best friend. I use it every night on almost every part of my body. Giving myself that kindness has helped me accept my body where it is NOW. I treat my body on its own terms even though they can change hour to hour.

Once my ribs were healed, I started 20 Minutes to Fitness in January 2017, which is a weight lifting program using machines. Since my muscles weren’t as strong and my joints were unstable, free weights were not an option if I wanted to approach this intelligently. From November 2014 to January 2017, I lifted no weights. My only exercise was walking and Pilates starting in June 2015. I started on the leg press machine at 345 lbs. A year later of eating at maintenance, I got up to 515 lbs! My left arm was far weaker than my right since I had to quit PT after I broke my ribs. After a return to PT and hard work in Pilates and 20 Minutes to Fitness, my arms were mostly even by summer!

Learning to live life to the fullest

Also during 2017, my hips stabilized, I dislocated most of my ribs, my ribs became unstable, my right shoulder kept popping out and became unstable, I struggled with migraines, got several sinus infections, and I had really bad food poisoning. Every single time I got injured or ill, I kept eating as much protein as I could and persevering towards my goals and following EM2WL.

I completed two more CTDM Workshops and continued to learn a lot about myself! Due to my increased confidence, I went after a position as a solo church singer in November and got it! I never would have done that before EM2WL and the CTDM. Real talk, I thought I was too fat to deserve it.

For those curious about my stats, my LBM is up to 163 lbs and my body fat is 40.8%, when we last checked in November 2017. I weigh 275 lbs (probably) and wear a size 18/20. I rarely weigh myself since it’s not a number that gives me much information. I do weigh in to get Styku body scans or if I need anesthesia.

Last month, I was able to start the EM2WL Level Up Training App with some modifications since my right shoulder and left ribs still like to dislocate. Then, my right knee decided to add itself to my list of frequent dislocations, so I took a few weeks off until we could get it to stabilize. (To put EDS into perspective for those who don’t understand it, my knee dislocated when I was walking from my desk to the bathroom. I wasn’t doing anything crazy. Just walking like a person.) I am continuing to eat at maintenance. My body is constantly injured and stressed, so I don’t think cutting is for me. Plus I get hangry just thinking about it!

Throughout this whole journey, the women of the CTDM community, especially those in the workshops have been behind me 1000%. I think I would be bedridden right now if it wasn’t for Kiki, Kelly, Ichel, and Tereza! It would be so easy for me to give up. I have every reason to. I do not have a day without pain. Ever. Exhaustion is normal for me. There are some days when I can barely move. But I don’t want to live my life watching others live theirs. Strength is my friend. My strong muscles hold my joints together when my connective tissues fail to. I currently weigh the most that I have ever weighed, yet my body is more stable than it’s ever been. I am the most confident and happiest I’ve ever been. And I didn’t need to diet to achieve that.

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