And so it begins…

If you’re here, you know that I am having my first surgery on Tuesday, October 18th. I fly out to LA on the 15th to relax, get a few things set up for recovery, and to complete my pre-op appointments.

So, what exactly am I having done? Short story…I’m having lipedema nodules extracted from my legs to reduce pain and maintain mobility. If you don’t want to read a lot, there’s a summary at the end.

Longer story…I unofficially diagnosed myself with lipedema (a chronic connective tissue disorder that causes an abnormal accumulation of painful fat tissue in specific areas of the body) in October 2020. I found out I had excess estrogen that was wreaking havoc in other ways. When I went to google what else excess estrogen can cause, lipedema popped up. I had seen it before but had dismissed it because I didn’t have the classic traits and symptoms. This time though, I was staring at pictures that looked like my body, my legs, my stomach, my arms. If you know me, you know I love a good research project. So, I started reading everything and anything I could to understand this connective tissue disorder.

It was upsetting to say the least. This was first diagnosed in 1940, yet it’s relatively unknown. It affects 1 in 9 women?! It’s commonly misdiagnosed as obesity. Even though it looks like fat, it’s not starveable like regular fat. So diet and exercise won’t get rid of it. It flares up in the body during times of hormone surges (puberty, pregnancy, menopause). There are conservative treatment methods to help manage the pain and to keep things from getting worse and requiring surgery. So, I dug into those first because surgery freaks me out.

The last two years, I’ve had a second full time job managing this disease and the pain associated with it. You name it, I’m doing it: low carb and intermittent fasting to keep inflammation down, swimming to reduce swelling and for cardio since pain keeps me from most intense workouts, manual lymphatic drainage massage to help move stagnant lymph fluid, graston technique to break up scar tissue (think a butter knife kneading the most painful/bruised/sensitive parts of your body), kinesio taping to help lymphatic drainage, cupping to release scar tissue, medical grade compression for 12-18 hours a day for swelling, vibration plate to move fluid and help break up dense tissue, massage gun to break up tissue, fascia blasting also for breaking up tissue, dry brushing to help lymphatics, supplements to thin lymph fluid.

I’m tired just typing it out, but that has been my life for the last 2 years as I try to get a handle on this chronic disease. During this time, I managed to lose some weight. While I have a lot of fat nodules that can’t be eliminated by diet and exercise, I also had some straight up Doritos and baguette fat cells that could be burned. So, I went after those. Despite losing 50 lbs and despite all these conservative treatments, my pain levels are at their highest thanks in part to where my nodules are located. They are concentrated around my calves/knees/hips and putting pressure on my joints and causing pain.

I’m no stranger to pain. Back in 2009, I broke my arm. Thanks to a negligent doctor, my compound spiral humerus fracture was left untreated for 3 months. Thankfully, I found an orthopedic surgeon who was able to put my arm back together and helped save my radial nerve (that was almost severed due to it being caught between 2 pieces of broken bone and fraying 3 months). The fact I have full use of my left arm is a miracle. All that to say, I know pain. We are besties. My pain tolerance is ridiculously high. So, when I say this is the worst pain I’ve ever experienced, it’s no joke.

About 18 months ago, I started researching surgery options. At the time, I thought this will be good to know for down the road, but deep down I knew I’d need this sooner rather than later. I researched many doctors and surgeons and found a handful that I thought would be a good fit. After a year of trying to treat this on my own, my pain was getting worse as was my mobility. So, last September I flew out to LA for a consult with a surgeon who has experience with advanced stage lipedema patients. After that visit, I started planning for surgery.

In the year since my consult, I’ve focused on doing anything and everything to get my body and mind strong and healthy for surgery. Even at my fluffiest, I’ve always had excellent lab work. I’ve never had any of the traditional obesity markers (high blood pressure, high cholesterol, fatty liver, diabetes, etc.). In fact, doctors would be amazed at my results and insist everything was great, and I just needed to diet and exercise more. Spoiler alert, everything wasn’t great and diet and exercise wasn’t going to fix this. I digress. I’ve spent a year mentally and physically healing my body to get it ready for the massive overhaul it’s about to undergo.

If you’ve made it this far, kudos. I promise all my updates won’t be this long-winded. I’m also using this page as a place to journal this phase of my life and this part of my health journey. It took a lot to get to this point, and as you can imagine, there are a lot of feelings to process. Also, I want to share my story with others because dealing with chronic illness can be such an isolating and lonely experience. If one person can find some comfort in my ramblings, that makes my pain and struggle feel like it wasn’t in vain.

TL;DR: I have a connective tissue disorder called lipedema that has caused the accumulation of fat around my joints. This has caused a lot of pain and has reduced my mobility. After 2 years of conservative treatments, I’m pursuing surgery to remove these nodules, reduce my pain, and increase mobility. All pre- and post-op updates will be posted here. Prayers and good thoughts are requested and appreciated ❤️