[Updated] Coming August 10, 2017: Lippy Legs & All – My Life with Lipedema

Scheduled for August 10, 2017 release.
You can pre-order your copy from the publisher here:
https://www.smashwords.com/books/view/710509

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For years, I watched as my calves legs grew larger, bruised easily, and became more painful. Even bumping against a chair or the corner of a wall would send shockwaves of pain through my calves and leave me with huge bluish-purple bruises.

I knew something was wrong, but what could it be? I thought it was a simple case of edema or general swelling, but keeping my legs elevated and taking diuretic pills had no effect. In fact, they only became worse.

In 2014, after several attempts to locate a physician who would help me figure out what was wrong, I was lucky enough to get a diagnosis. I had Lipedema, a genetic disease I'd never heard of before. It's a mystery disease with no known cure thus far.

Not widely discussed, Lipedema is rare and only affects about 11% of women. Few doctors are able to recognize the symptoms, nor have they been exposed to information about the condition and how it relates to the all-important lymphatic system.

LIPPY LEGS & ALL is the story of my life (thus far) with Lipedema. I'll discuss, in detail, what I've learned about the disease, how it's permanently changed me both physically and mentally, and why I'm determined to bring awareness to this condition so women who may suffer from Lipedema can get the essential diagnosis and treatment they deserve.

Without a proper diagnosis, treatment, and rehabilitation, a Lipedema sufferer can face a bleak future of wheelchair-bound immobility or, worse yet, amputation of their limbs. No woman deserves either of those things; if I can cast a wider spotlight on Lipedema through the publication of this book, I will.

Lipedema is NOT the same as being overweight or obese

http://www.nytimes.com/2016/09/26/health/obese-patients-health-care.html

As I told my friend, Jade, who shared this on her wall:

I just want to mention that while there are obese patients, there are those who have Lipoedema (Lipedema), like I do, which is a rare, incurable disease that is genetic in nature. Not everyone who is overweight is merely obese.

With Lipoedema, it does not matter how much you diet or exercise...it's NOT the same as obesity. I was diagnosed in 2014 and the only thing I can do is manage it with Manual Lymph Drainage (MLD) therapy and compression garments...until they find a cure, that is.

Only 11% of women have Lipoedema, and they're often mistaken for simply being overweight or obese...which is NOT the case. I finally had a female doctor listen to my concerns and who sent me for a diagnosis. The male doctor I had previously totally dismissed my concerns that something was terribly wrong with my lower limbs. Needless to say, I dropped the male doctor and am grateful I found a female doctor who at least investigated my concerns and discovered that I had a rare, incurable, genetic disease.

And thanks to the ACA (and President Obama), I was able to get the diagnosis, compression garments, and MLD therapy I needed.

Comparison between normal fat vs. Lipedema fat

I know this is hard to look at, folks, but this is how Lipedema affects women like me who have it. Many women who have this aren't even aware of it. We MUST make people more familiar with rare, genetic disease so women get the diagnosis & treatment they deserve!

Connective tissue & cell walls are up to several hundred times thicker in people who have Lipedema. Again, there is NO cure at this time, so you can only manage it as best you can.

Hopefully, there will be a cure in the near future. I do not want to have this disease progress to the stage where I might lose mobility or have my legs amputated!

To find out more info about Lipedema (known as Lipoedema in the UK) and my personal journey with this disease, please follow this blog & like my FB page, Lippy Legs & All.

(For illustration purposes only. This image is not mine & I do not claim credit.)

Improvement with Manual Lymph Drainage & use of compression garments

WARNING: YOU MAY FIND THESE PHOTOS UNCOMFORTABLE OR DISTURBING. 

So, this is a big reveal moment for me. I've been hesitant to do so until now, for obvious reasons. I'm posting a photo of how my legs looked BEFORE I began therapy for Lipedema last year, in addition to a pic I took today of how my lower legs look after I've worn compression garments. Both of my lower legs are affected, with the right leg *always* worse than the left for some reason.

Things to remember:
* This is a rare, genetic disease; it is not curable at this time. You can only manage it with therapy and compression garments to keep it from becoming worse.
* This is NOT the same as regular edema.
* This has nothing to do with weight; you can be a size 0 and still have Lipedema. Your legs will look like this, although your body will remain smaller above the waist.
* You cannot get rid of Lipedema by dieting, exercising, or taking medicine (because there is NO cure at this time).
* It's also characterized by bruising and pain/pressure in the affected limb.
* Lipedema was discovered 75 years ago, in 1940.
* 1 in 10 women have Lipedema. Most don't know they have it.
* I'm at Stage 2. The stages go from Stage 1 to Stage 4 -- the latter is where you don't want to be!
* In severe cases, patients lose mobility or may need to have their limbs amputated.

Before beginning therapy for Lipdema in fall of last year.

Today's pic of one of my legs. If I don't put my compression garments on, my legs will begin to fill with lymph fluid and will once again resemble the 1st pic.

I was referred to Penrose Hospital Rehab last year. My physical therapist, Lil, has 20+ years of experience treating those who suffer from Lipedema and Lymphedema. I have been wearing compression garments (from the knee down on both legs) and have gone through Manual Lymph Drainage (MLD) therapy. It's made a difference (see photo at right). Now, once I take off my compression stockings, my legs will begin to fill with lymph fluid again and will look more like the pic on the left. 

On a good day when I wake up, my lower legs look about half this size. Some days they look almost normal, save for the band of separation between the calves and my ankles/feet (you can see this band, or shelf, in particular in the right-hand pic). That's one symptom of Lipedema that separates it from Lymphedema, as well as a negative Stemmer's sign.

Since 2011, I've lost 73 pounds using the Weight Watchers points system. I did it to gain energy and feel better -- my husband loves me regardless of how much I may or may not weigh. I did it for me so that I could accomplish more. Even after losing so much weight, my Lipedema is unchanged. It's just as bad as it was before -- that's because DIET AND EXERCISE will not cure this genetic condition. This is not obesity, this affects skinny women, too. It's suspected that it may be an inflammatory disease connected to a hormone disorder, but medical researchers aren't completely sure of what truly causes Lipedema.

If you are unlucky enough to have Lipedema (and secondary Lymphedema, as I have), you're stuck with it, and that totally sucks. It messes with my head and my self-esteem. I will never wear dresses or shorts again. The embarrassment and humiliation I feel is often overwhelming.

But this is the hand I've been dealt, and I'll use it to raise awareness and educate people about this relatively unknown condition. I'm still Bev, I'm still the same me I've ever been, and this is yet another challenge I'll face. Judge me by who I am inside, not by how my Lipedematous legs may look. I'll be okay; it's the women who have Lipedema who don't know they have it or know what it is that concerns me most.

Some women can have Lymph-Sparing Water Assisted Liposuction (WAL) in Europe and parts of the US. The procedure removes the diseased tissue from the legs. Unfortunately, many insurance companies will not cover WAL because they classify it as cosmetic surgery, rather than surgery that will help a person become immobile or possibly face amputation as the disease worsens. As we all know, if insurance companies can avoid paying for surgeries, they will.