This will start sort of in the middle of my journey, because looking back I can tell that this wasn’t the beginning, but this is where my health changes were serious enough that something had to be done. I had eaten an extremely healthy selection of foods for years. I didn’t eat fast food or junk food or drink sweetened drinks of any kind. I’d hadn’t eaten gluten for over five years. Every bite of beef and poultry was grass fed and organic. I no longer drank alcohol and had cut out 95% of sugary treats. I was an active homeschool mom of 3 teenagers and now had a baby. I had recently been a dance teacher and gymnastics instructor and trained for a 5K mud run. When I gained 50 pounds in about a month’s time after my daughter started eating solid foods, rather than exclusively breastfeeding, I didn’t have any idea why. I didn’t know that this was the line that would divide my life into before lipedema and after lipedema, but it did.
By the time my very petite daughter was three years old, my arms hurt so much that I flinched when she leaned against me at bedtime to read. My teenagers teased me about spying on them because they would find me standing in the hallway for no apparent reason and didn’t believe it was because it hurt too much to keep walking to the next room. My husband took over more and more household responsibilities and I grew from the size 8 I was after my daughter was born to a size 22 in four short weeks. I have a journal entry from that time that sounds so desperate, where I was terrified of missing my daughter’s growing up years because I would live them from bed. It was at that time that I found out I had lipedema. Lipedema...with the scary late-stage pictures online and no real answers.
One day I was reading some comments in a lipedema facebook group and a lady named Cheryl (who has since become a dear friend and mentor) said she had lost weight by eliminating a food from her diet. A food that seemed random to me. She said she realized that certain foods caused her inflammation to worsen along with her symptoms and she’d begun tracking her foods. At first I thought it was silly to even consider it because I had already cut out grains, alcohol, sugar, shellfish, some nightshades, and a lot of dairy. What else could I possibly react to?
I already knew that gluten made me have digestive issues and that I’d had swelling so severe I’d gain two clothing sizes overnight, but as I began to look into this intriguing idea of food sensitivities, I realized that I was having lesser-known reactions to some foods. For months I’d been coughing and having a sensation of my throat closing up while eating, and had been trying to figure out why but the symptoms didn’t seem to fit any of the disorders or syndromes I’d run across. Then on one of the lists describing food reactions, I saw the exact symptoms I’d been having. Because my reactions were within a few seconds of putting a food in my mouth, it was fairly easy to determine what was causing it once I began to pay attention. I removed almonds, coconut, and spicy peppers from my diet. This was a huge shift because after going gluten free I had relied on almond and coconut flours heavily. Almonds were one of my “healthy” go-to snacks. I had also added coconut oil as my primary cooking oil, used coconut milk in my smoothies, and switched all of my haircare products to coconut-based ones. My healthy meals were often spicy, such as a chicken breast with loads of peppers and pepper jack cheese melted on top! Once I eliminated those three foods, I lost 6 inches within a month after a year-long plateau.
I track my ups and downs with this disease using measurements rather than a scale because the scale hasn’t moved even though I’ve gone from that size 22 down to a 14 and lost over 50 inches in the past two years. While connective tissue therapy has played a large part, I have also been able to see where paying close attention to my foods has been the component that I needed to pair with those therapies to give me much of my life back. Here are a few examples. There was a week where I ate peppers for several days in a row and gained 3 inches on my hips and 2 ½ inches on my waist plus had joint and muscle pain and extreme fatigue, which told me it’s not time to add those back into my diet. There was another time I ate three bites of potatoes and by the next morning, I’d gained a couple of inches on hips and waist and had all the symptoms I just described with such severity that I was in bed for a whole weekend. Probably the most dramatic positive change was the first time I cut out bell peppers (at a later time than the spicy ones mentioned above) and lost 2 ½ inches off of each thigh within two days. It’s crazy the way my body reacts to food sometimes!!
I don’t follow any specific diet plan, though I’ve tried just about everything. I find that after a long struggle with extreme calorie reduction to try and lose weight (this is one of those things I realize in hindsight was me trying to control a body that was already battling lipedema), I need to eat nutrient-dense healthy meals at regular intervals with occasional treats and focus on nourishing and healing rather than restricting. I pay attention to foods that cause me to have those digestive upsets or other symptoms like inflammation, pain, stiffness, coughing, and difficulty swallowing and exclude those. Is it difficult? Yes, sometimes it is. Is it annoying, frustrating, scream-worthy, cry-inducing? Yes, sometimes.
What I have discovered is that I need to learn about my body and do what is working for me. It is exhausting at times to do therapies and take supplements and read every label and skip the mac and cheese and even just drink enough water. I always skip the pasta, and almost always make myself do those other things because if I don’t, what I’m giving up isn’t worth it. Tossing a ball with my daughter or going on a walk with my husband or cooking a fantastic meal when all three of my now-adult kids are together in one place. Lipedema is difficult and one of the “aha” moments that changed how I deal with this disease and continue to embrace life was that first scroll down a facebook post about food sensitivities, and then taking time to research something that made me pause and make it part of my protocol.
*previously published as guest blogger on lipedemadiva.com
