Losing Friends to Stage 4 Lipedema

I've lost two online friends in the last couple of years I met in the Lipedema world online. One died a few weeks ago. Both were very active in the Lipedema world, getting the news out, doing videos, reports, and being a support to women with Lipedema. Their health caused them extreme difficulties. Both died of Lipedema related conditions and were very young, with one who was only in her mid-30s and another in their mid 50s. Many don't take the dangers seriously of stage IV Lipedema. These two friends moved heaven and earth to take care of themselves, that is one thing that stood out about them. They were wonderful advocates for OTHERS but also advocates for THEMSELVES.

One even traveled to another country to get special liposuction surgeries. Another found specialists some years later in the USA. They did their compression, sought treated and exercised but Lipedema stage IV/Lipo-lymphedema marched on. Many see this Lipedema as something weight loss would cure. If only they would 'go on a diet" and there's even people within the Lipedema community that ignore the fact that in the higher stages, years of untreated Lipedema isn't going to go away. Lose what you can, but many people in higher stages are judged over their weight. In my case I did continue, with the gym and while I wish I was able to get over there more days of the week, the spoons with chronic fatigue are limited. I lost a little weight, but it was nominal. I don't know where my weight is now but don't think I have gained, I can tell by my walking. I did shrink some on top, but that's happened before. Both these friends put in every effort they could to stay to protect their health, but were supersized like me.

I feel very sad about it all and have cried over both. They both fought so hard. Sometimes this world is too difficult, and I get strange thoughts about why were us humans put on this earth, to suffer so much like it's an experiment of a mad man. This is one condition where the suffering is too much. These were two folks who showed bravery and grit in the face of unrelenting health challenges. They were an example to many people. Their activism work helped so many of us.

I almost died of Lipedema in my 20s and 30s, I didn't know it was Lipedema causing all those horrific leg infections. One friend was lost to sepsis. Sepsis is the danger for all people with Lipedema in higher stages.

You get cellulitis and then it transitions into blood poisoning. In 2001, I almost died, this was the crisis that led to my later religiosity and other dubious decisions in life but I had sepsis several times before in the 1990s. These were two-three week hospital stays. My life now is impacted by all this where staying alive means laying down for hours a day and assessing how one leg is close to an infection or not. Doctors don't realize my excellent compliance to wrapping, compression and my leg press is ruled by fear and also wanting to be free from pain.

These friends did everything they could too. This is a merciless disease. Sadly it's impacts are diminished via prejudice, and some sexism, just seen as a "fat woman's disease" that "diets will cure" but people are losing their lives to it. My two friends did.