Chapter 1: A Personal Journey with Lipedema

Dealing with lipedema, which later progressed to lipo-lymphedema, has made weight loss an uphill battle for me. Despite my best efforts to eat healthily and exercise, my body seemed to resist any progress. The more I attempted to shed pounds, the more my weight fluctuated. Each time I thought I found a workable eating plan, I would end up gaining weight instead.

In recent years, these fluctuations intensified, with my weight swinging by 25 to 30 pounds within just a couple of weeks. Before the progression of my condition, I could manage to lose weight by meticulously counting calories and maintaining a regular exercise routine. However, after undergoing lipedema surgeries, my progress came to a grinding halt, especially after developing chronic knee pain and arthritis in 2022. This decline severely affected my ability to walk and perform everyday activities.

Despite the Lipedema Standards of Care released in 2021, which clearly state that BMI isn't a suitable health measure for lipedema patients, my elevated BMI has hindered my journey to reclaim my life. Many surgeons have denied me procedures like knee arthroscopy or hernia repair, citing their BMI cutoffs. Instead, they suggested weight loss surgery, assuming I hadn’t already contemplated that option. None inquired about my eating habits, nor did they consider that my health insurance does not cover bariatric surgery. Moreover, there was a glaring lack of understanding of lipedema and lipo-lymphedema among them.

My lipedema surgeon made attempts to convey the seriousness of my condition to the knee specialists, explaining how lipo-lymphedema has impacted my metabolism. He highlighted that losing weight might not be feasible for me due to my body's low calorie-burning capacity, but regaining mobility in my knees was crucial for my recovery. Unfortunately, these explanations fell on deaf ears.

In light of these challenges, I decided to find a new primary care provider in Tennessee, hoping to explore newer weight loss injections, particularly Zepbound, which contains the active ingredient tirzepatide. Eli Lilly produces two versions of this medication—Zepbound for weight loss and Mounjaro for diabetes.

Like Ozempic, Zepbound is available in single-use injection pens in various dosages, and it has often appeared on the FDA's shortage list since its introduction in 2022. After hearing positive reports from other lipedema, lymphedema, and arthritis patients about reduced pain and swelling after starting the injections, I felt compelled to give it a try. Previously, I had a short experience with semaglutide, but it merely led to boredom with food and numerous pharmacy issues. I was optimistic that tirzepatide would yield a better experience, provided I could find a primary care provider willing to prescribe it.

The sole provider accepting new patients at my chosen clinic turned out to be exceptional. He was thorough, compassionate, and demonstrated a basic understanding of lipedema during our initial appointment in May. He acknowledged that diet and exercise alone are ineffective for treating lipedema. When he mentioned the possibility of using injections like Ozempic, I expressed my desire to try Zepbound instead, and he concurred that it would be the most effective choice.

It took a few months for my PCP to prescribe the injections, as he wanted to ensure my blood work was stable and that I had acclimated to my other medications for ADHD and arthritis. Although my blood tests showed no signs of type 2 diabetes or lipid issues, insurance denied coverage for Mounjaro aimed at lowering my A1C.

Zepbound is prohibitively expensive for most patients in the US, with an out-of-pocket cost exceeding $1,000 every month. However, Eli Lilly offers a savings card allowing uninsured patients to purchase Zepbound for $550. Unfortunately, the price is set to rise to $650 next year. To navigate this financial hurdle, my PCP suggested compounded tirzepatide from my local pharmacy, which charged $350 for a small 2ml vial containing 20mg of tirzepatide, plus an additional $10 for insulin syringes and alcohol prep pads.

Compounded tirzepatide is a contentious issue, as Eli Lilly attempts to protect its profits. However, due to its ongoing shortage on the FDA list, certain pharmacies can legally produce and dispense the medication. Instead of packaged pens, compounding pharmacies provide the drug in standard multi-use vials for injection.

When I collected my first vial, my pharmacist guided me through the self-injection process, though I was apprehensive about administering the shots and concerned about potential side effects. He advised me to inject at night to minimize any adverse reactions, such as nausea. Reading about other patients' experiences heightened my anxiety regarding possible issues like diarrhea or pancreatitis.

After two days of anxiety, I finally administered my first tirzepatide injection on July 19. It was nerve-wracking, and I questioned whether I was making a poor decision amid the controversies surrounding weight loss injections. I worried about the authenticity of the compounded medication and whether I was handling the injection correctly.

Ultimately, I decided I had endured enough suffering from my lipedema and its complications to warrant giving this medication a chance. That evening, I experienced mild nausea about 35 minutes post-injection, so I took my pharmacist's advice and went to bed. Compared to many other patients, I found my side effects manageable, though I did experience some nausea, frequent urination, heartburn, and extreme fatigue during the initial weeks.

Reflecting on my expectations, I realized I had been misled into thinking that if tirzepatide was effective, I would lose my appetite entirely. Conversations about appetite suppression associated with injections like Zepbound or Wegovy led me to anticipate a lack of hunger. Instead, I found that tirzepatide alleviated my anxiety around food, allowing me to feel more in control. I noticed a significant change in my morning hunger levels, although it didn’t completely eliminate it.

Over time, I recognized that my hunger varied day by day while on tirzepatide, but I no longer felt guilt or worry about eating. This newfound freedom was exhilarating. Many others have reported a similar experience, describing how tirzepatide has diminished their obsessive thoughts about food. I used to experience anxiety and guilt at every meal, always questioning if I was eating too much or not restricting myself adequately. I felt undeserving of food, regardless of whether I consumed an apple or a salad.

Strangely, tirzepatide has achieved in two months what years of therapy could not—it has liberated my relationship with food.

During the initial four weeks, I took a loading dose of 2.5mg, which is not considered a therapeutic dose; it was merely to help my body adjust to the medication. I initially planned to weigh myself weekly on injection days, but I felt disheartened when I discovered a weight gain of over a pound by the time of my second injection. By the third injection, I was shocked to see a total gain of 12 pounds.

How could this happen? I was confident I wasn't overeating or engaging in binge eating, and my food choices were healthy. I had also become accustomed to wide weight fluctuations, including gains even while fasting. I decided to stop weighing myself and worrying about the numbers while continuing with the tirzepatide.

After my birthday in August, my daughter Sophie and I traveled to Idaho for medical treatments. I brought my tirzepatide along to ensure I wouldn't miss an injection. After a week of various naturopathic therapies, I weighed myself upon returning home and was pleasantly surprised to find that I had lost all the weight gained during my initial weeks of injections, plus an additional 12 pounds.

I was unsure if this was merely a coincidence from traveling or if I could maintain this progress at home. After years of being told by doctors and strangers that I was somehow at fault for my morbid obesity, I had grown used to second-guessing myself.

After four weeks at 2.5mg, I increased my dose to 5mg for another four weeks. Last week, I moved up to 7.5mg and requested my PCP transfer my prescription to a more affordable pharmacy that delivers it via FedEx.

I initially managed the heartburn with over-the-counter Prilosec, but it returned with intensity after my third week on 5mg. I also started feeling bloated and heavy, as if my food was just sitting in my stomach, making me uncomfortable. I was concerned about developing gastritis, but my symptoms resolved when I began taking digestive enzymes with every meal. Now, I won't eat without them.

As of today, I have lost nearly 27 pounds since starting on July 19. While this may seem minor compared to the 200 more pounds I aim to lose, tirzepatide has already proven to be transformative.

For the first time in years, my weight fluctuations are limited to one or two pounds rather than double digits. Moreover, this is the first instance since my knee injuries where my weight has consistently decreased.

Even more encouraging, my joint pain and stiffness significantly diminished last week. I transitioned from gingerly entering physical therapy with a cane on Monday to walking into the clinic unaided on Wednesday. That day, I experienced no pain during any of my exercises. The following day, my therapist introduced weights into my regimen to capitalize on my newfound lack of pain.

Although my knee's range of motion is still not ideal, it has improved by about 60% compared to where it was over a year ago. I can now navigate stairs with minimal discomfort, and the alignment of my hips and knees has notably changed. It feels as though I'm inhabiting a different body.

After being immobilized for so long, there is still a significant journey ahead before I regain full mobility and agility, but I am filled with hope. This past summer was particularly challenging as I struggled to enhance my mobility and rebuild my strength. I felt trapped in a bad flare-up in June, even with prednisone assistance. My antibiotic regimen for rheumatoid arthritis alleviated some of the severe stiffness and pain but never returned me to the peak of energy and minimal discomfort I experienced in May.

While I don’t feel quite as I did back in May, I am apprehensive that this improvement might be temporary and that I'll soon revert to hobbling in pain. This isn't merely about the weight loss; I currently weigh the same as when my knee pain first began.

Additionally, I've noticed less swelling in my lower legs by the end of each day. Each morning, I wake up thinking, "Wow, my ankles are looking increasingly normal."

It seems that tirzepatide may be the key to significantly improving my quality of life. If that means I need to remain on this medication or a similar one for the rest of my life, I see no shame in that.

Current research suggests that tirzepatide injections can alleviate joint pain in some patients by reducing systemic inflammation. The most exciting aspect of tirzepatide isn’t just the appetite suppression that many discuss; in fact, not every patient will experience this effect. What I find truly promising is the drug's capacity to elevate a patient's basal metabolic rate while facilitating the body's access to its fat stores—all the while alleviating inflammation.

For someone with advanced lipedema like me, this combination is a breakthrough. Many people, including numerous medical professionals, lack awareness of how patients with lipo-lymphedema can gain substantial weight. They often assume we have caused our condition through negligence or lack of discipline, believing that our lymphatic damage stems solely from weight gain, rather than understanding that we gained weight due to underlying health issues.

It’s crucial to have medical professionals who genuinely care and seek to understand our experiences.

Researchers only began to unveil in 2020 that lymphatic dysfunction, particularly in the lower body, can drastically affect metabolism. Most individuals associate the lymphatic system solely with waste removal, but its role is far more intricate. The lymphatic system influences our hormones, immunity, and metabolism. Even lymphedema patients without lipedema face a sluggish basal metabolic rate that leads to fewer calories burned than expected, while the impaired lymphatic system signals the body to produce and retain more abnormal fat.

As a result, more researchers are recognizing that body fat is not merely a reservoir for excess calories. In lipedema and lymphedema, abnormal body fat is particularly overactive.

Patients like me struggle with a condition that inhibits our bodies from tapping into excess fat stores, even when we significantly reduce calorie intake and increase physical activity. Our bodies naturally burn fewer calories than those without our advanced condition, and lymphatic dysfunction alters the way we store and utilize fat.

To complicate matters, many doctors misdiagnose us for years, causing us to waste precious time and resources on ineffective treatments while risking severe complications. In my case, the delay in receiving a correct diagnosis led to knee injuries and disability, which further impaired my metabolism due to pain and stiffness that limited my activity.

Now, tirzepatide is enabling me to experience consistent weight loss, minimal fluctuations, less body pain, and a lack of need for intense exercise or restrictive diets—all by simulating hormones that my body is deficient in.

This is why some people argue that using a drug like tirzepatide is "cheating"—it allows for weight loss without the accompanying suffering.

Those who uphold fat bias and diet culture often resist the notion of alleviating suffering for individuals with larger bodies. For many, having a metabolism that functions as expected and responds positively to a healthy diet and regular exercise is something they either take for granted or boast about.

People frequently claim that we earn the bodies we have, yet few consider the complexities of living in a body with a broken metabolism. This misperception is not uncommon.

Our society continues to moralize obesity, even now that these injections illustrate how human metabolism is far more intricate and varied than any BMR calculator could suggest.

Recently, I discussed my tirzepatide experience with my lipedema surgeon, who affirmed that this is indeed the right path for me. He believes this medication will become crucial for the lipedema community.

Some outsiders view the need for most patients to remain on these medications for life as a negative aspect, as if that’s a terrible burden. But taking medication for a chronic condition that lacks a cure is not unprecedented.

It seems that people's perspectives shift when it comes to larger bodies. For me, the priority remains regaining my mobility and effectively managing my condition.

Chapter 2: The Impact of Weight Loss Injections on Quality of Life

The first video titled "Diabetes Drug Could Be Game Changer For Obesity And Weight Loss" explores how tirzepatide has the potential to transform the lives of those struggling with weight loss, especially among patients with metabolic disorders.

The second video, "Game changer' painless injections to shed pounds | Weight Loss Wednesday," discusses the revolutionary effects of modern weight loss injections, highlighting patient experiences and outcomes.