Coming June 10, 2017: Lippy Legs & All – My Life with Lipedema

Scheduled for June 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 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.

[My Lipedema Journey] Visible proof of the benefits of Manual Lymph Drainage (MLD) and wearing 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.

 

What's an uncommon disease some women have, but they may never know about? Lipedema. Time to raise awareness!

This is not about writing per se, but the topic is connected. I've been writing about my journey with this disease on my blogs for nearly a year. I may expand those writings into a non-fiction book. Not sure yet.

Anyway, this is important to me, but even MORE important is spreading the word so women who might be affected can seek diagnosis and treatment.

Only 11% of women have this disease, so it's not common; however, for those who have the disease, it can be devastating -- especially to the psyche. That's where it's hurting me the most, in fact. I'm blessed to have a husband who loves me and is with me every step of the way.

I was diagnosed almost a year ago, thanks to Dr. Boyce & Penrose Hospital Rehab Services. Wish it had happened sooner, but I guess I was lucky to get a diagnosis. NOTE: Lipedema is NOT the same as obesity. You can starve yourself and you will still have Lipedema. It's a genetic disease that's incurable.

Without the Affordable Care Act (ACA), I would've probably never gotten diagnosed or been able to receive treatment and info on how to manage this disease. Thanks, Obama!

According to the article mentioned below, "Lipedema is inherited, and puberty, pregnancy and perimenopause exacerbate the process. Treatment is compression therapy and liposuction."

Lipedema cannot be cured by diet or exercise. Symptoms include bruising, tenderness, swelling, and heaviness in the affected limb(s).

In the article, Dr. Mark Smith said, "Most patients don't even know they have lipedema. I have seen women break down in tears once they receive their diagnosis, because their whole lives they've been told they're fat and they're not exercising; not eating right. Meanwhile, they have a condition that's not as simple as diet and exercise."

'Fat Disease' Puzzles Female Sufferers

http://www.clickorlando.com/news/fat-disease-puzzles-female-sufferers/33505556

 

Looking back on nearly a year since my Lipedema & Lymphedema diagnoses

Almost a year ago, I was diagnosed with Lipedema and Lymphedema. There are no medicines to take, no cures to be had. You do not have to be overweight to have this, and they aren't sure what causes it (sometimes even children have it, sadly). That's why it's labeled 'unclear etiology' by the medical journal article linked below, which was published in the Journal of the American Board of Family Medicine (JABFM). 

"Approach to Leg Edema of Unclear Etiology"

http://www.jabfm.org/content/19/2/148.full.pdf+html

The U.S. is far behind Europe in diagnosing and treating these conditions, but raising awareness can help those who may have it and not know it. I'm doing my part. Lipedema often runs in families and is thought to have a possible genetic connection. Hormones are also involved, since only a handful of males have EVER been diagnosed with it.

In severe cases, you lose mobility or, sometimes, have your leg(s) amputated. Thankfully, I was diagnosed and began MLD (Manual Lymph Drainage) therapy and started wearing compression stockings. My legs, below the knees, are affected. But sometimes it spreads. I'm at Stage Two, and DO NOT want to end up at Stages 3 or 4. 

So far I'm doing okay with managing it. If you saw me out in public, you'd never know I have this condition, but I do. There has been marked improvement, but I can never NOT keep up the maintenance. It will not go away. It can only be managed. Some day I hope researchers and doctors pinpoint the cause(s) and find a cure. Most people haven't heard of Lipedema OR Lymphedema. I sure hadn't prior to 2014.

Ladies, it doesn't matter how young or old you are, and it doesn't matter if you're a size 2 or a size 20+ -- you should become familiar with these diseases. The quality of your life depends on it.