Having lipedema is complicated. For those of you who don’t know what it is, here’s a great description of lipedema through the website Lipedema Simplified:
Lipedema is a relatively common fat disorder that is often mistaken for simple obesity. Its clinical diagnosis is an adipose tissue disorder or a lipid metabolism disorder. A typical lipedema patient is a woman who struggles with large hips and legs, usually out of proportion to the rest of her body. Lipedema also appears in the upper arms.
One of the hallmarks of the disease is that lipedema fat is relatively unresponsive to standard diet and exercise. These measures may lead to weight loss in other areas, but the size of the hips and legs remains disproportionately large.
Lipedema is a disorder of adipose tissue distinguished by five characteristics:
1) it can be inherited;
2) it occurs almost exclusively in women;
3) it can occur in women of all sizes, from the seriously underweight to the morbidly obese;
4) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and
5) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through standard diet and exercise.
With this description, you get the idea that it isn’t a lazy person being fat. Right?
So when I started this journey, I could not find a doctor to do surgery on me. Why? Lipedema specialists are rare and hard to find. Why? Because it’s tough to work on and most doctors in the United States think it’s lazy fat people (my opinion). In Europe, there are quite a few doctors. One clinic in particular is Med-Plast International who have been pinnacle in working with lipedema patients and keeping them from getting bigger. They’ve invented a type of liposuction specific for lipedema which has been incredibly successful.
Ok, back to the USA and my journey. Since Tricare Humana could not find me a surgeon, I reached out to my state senator Bob Casey, and filed a congressional inquiry. It turned out to be a great success. Tricare reached out to me, got me a case manager and we started searching again. They finally saw the trouble I was having because there were no specialists in network to help me. They found me Dr Volshteyn in New Jersey (as I’ve talked about bef0re) who was out of network but said they could get a “one-time” approval for surgery. I turned in the paperwork and I was so sure all would be approved.
WRONG!
The denial was quick. As nice as I could be I called them and asked for the following information: The reviewer, their license number, their specialty, and their continuing education information. Every person I talked to said, “we don’t have that information.” This is typical for the insurance companies because they don’t like patients snooping around and asking questions. Fine. Let’s play the game. I appeal. I also called the Pennsylvania State Attorney General’s office and sent them all the information. Now, I’m speaking out on social media and on this blog. Because of this disease, I’ve had to close my business because I can’t do as much yoga as I used to because of my size below my waist. Walking long distances past 1-2 miles I have pain for two to three days. I dry brush. I exercise daily. I eat a high-protein diet and don’t eat processed foods. I’m doing everything right. So why are you denying me?? WHY? I meet all your qualifications!
The fight continues…