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.

[Lipedema] 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 visit my blog Lippy Legs & All at http://lippylegs.blogspot.com

[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

 

More thoughts about suffering from Lipedema

Just found a page where a lady who has Lipedema is having her 6th surgery to keep from progressing to Stage 3.

I'm at Stage 2, and I'm horrified at what Stages 3 and above look like. Right now all I can do is MLD (Manual Lymph Drainage) and compression garments. But I doubt our insurance would pay for that many surgeries, if any. I wouldn't WANT to get to the point where surgery is the next step, but this disease is so insidious in its progression that it could happen.

I'm sure it's a drag for some people to read these posts because it doesn't impact their lives. Let's be honest: if it doesn't affect you, why should you care? But I have to talk about this, even if it's to myself. I think about this disease all the time. Mainly because I see what it's doing to my lower legs on a daily basis. I hope I can stay at Stage 2. I can't go backward. I can only hope to stay where I'm at. Yes, I'm afraid.

Thank goodness I have a loving husband who says he'll be there with me no matter what happens. He loves me for me, and that's a rarity these days -- or so it seems.

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. 

"You mean it's not my fault?" Educating the masses.

This is for all of you who've said or been told, "Oh, you're just overweight. Eat less, exercise...it's just too much fat and you can get rid of it easily." Obesity or being overweight is one thing, lipedema is a genetic disorder and NO amount of dieting, exercise, or diuretics will cure it. Women who are anorexic get it. Women of all sizes get it. It's genetic, and if a female ancestor of yours had it, you have a greater chance of getting it, too.

There are no medications you can take for lipedema, which may also be one reason why the U.S. medical community isn't interested in doing much about it. They can't make a ton of money on this through drugs, for one reason.

Even if you have the tumescent liposuction in Europe, this disorder can take over again. And, worse yet, it can take over your ENTIRE body...you could literally starve yourself and it would STILL take over. Lipomas will form, the lymphatic system is compromised, you will bruise easily because the vascular system is also compromised, and if you are lucky, you might be able to hold at stages 1 or 2 (I am currently at stage 2).

Usually it's not caught early because women are just advised to 'diet and exercise.' Well, if you're traditionally overweight, that's fine. But this is NOT the same thing. This is a GENETIC DISORDER, WITH UNKNOWN CAUSES (BUT THOUGHT TO BE HORMONAL IN NATURE).

So, before you judge women, you should know what you're talking about. Only a few men have gotten this disorder, but roughly 11% of the population of U.S. women have lipedema. Most go undiagnosed, because they're told, "Oh, you're just overweight!" No...this is NOT the same thing, folks. That's like telling a diabetic to just regulate their sugar by using mind control.

Please watch enlightening video. Update what you THINK you know about some people -- me included. Because while there are many horses out there (people who are simply overweight), there's a group of zebras, like me, who have a genetic disorder that causes pain, swelling, bruising, mobility issues, and other uncomfortable things.

Increasing lipedema and lymphedema awareness is important so that, someday, women who may have it can get diagnosed before they're well onto their way to the latter stages of the disease.

https://www.youtube.com/watch?v=ncvw-SwWk5Q

Breathe, breathe, and breathe again!

My longtime friend, Cyndy Clemens, who is a trained breathworker, had some excellent advice today about the need for people to practice proper deep breathing when they first wake up for the day.

I am required to do breathing exercises for my recently diagnosed lipedema and lymphedema. Deep, proper breathing, particularly to activate the L-2 area of the spine, where a large cluster of lymph nodes is located, is important for all of us.

Each week when I go in for Manual Lymph Drainage (MLD), my physical therapist has me do specific breathing exercises while she works on different areas of my body.

Once I finish with this round of therapy in a number of weeks or months, she will teach me what I will need to do from home as far as MLD for the rest of my life. That will, of course, include instructions for daily breathing exercises.

So, proper breathing is only helpful for these diseases (which are not curable, only manageable), but I feel terrific when I do them as well. Breathing not only helps the lungs and other parts of the body, it's essential for proper function of the lymphatic system, which is a system I didn't know much about before August, when I was diagnosed. The majority of people have NO clue and they should learn how it's incredibly important to their lymphatic system, which supports the circulatory system and is essential for good health!

Make a note to learn how to breathe properly, then practice it daily!

Stage Two and Holding, So Far

Forgot to add that on Monday I finally remembered to ask my lipodema/lymphedema therapist what stage she thought I was in. She said that, based on the clinical signs and her experience, I'm at stage two. I told her I thought so as well, based on the photos and info I'd read on my own. I told her I did NOT want to progress to stages three or four (not gonna lie, stage four horrifies me). Her eyes widened and she said we didn't want that, which is why it's so important to be faithful with the Manual Lymph Drainage(MLD)and compression garments. So, it's official. I'm stage two. I'll take it. Better than the other alternatives! Just wish I'd caught this while I was in stage one, but that rarely happens.

Lipedema/Lymphedema Therapy Update—November 8, 2014

Meant to post this before now, but lotsa stuff going on. Visit with my physical therapist for Manual Lymph Drainage (MLD ) went well. Overall, my lower limbs are down in size and she's pleased with how compliant I am with following her recommendations. She hasn't measured me yet for my permanent compression stockings, though. I thought it would be this week, but she wants to wait another week or two.

I want to recognize my beloved husband for going with me, faithfully, to every appointment and being there in the room when everything takes place. I couldn't ask for a more supportive husband! I'm still bummed that what I have is not curable, but my therapist and my husband keep me positive. He reminds me that I'm beautiful and that my condition hasn't diminished his love for me one bit.

So, I have two visits per week, on average, and my therapist has 24 years of experience treating patients with lipedema & lymphedema. I'm in good hands -- literally!

A couple of things I have to watch out for the rest of my life: one, I can't do hot tubs anymore (not that I did them a lot, but still); two, I have to be careful when I travel by plane due to the effect it can have on my calves, ankles, and feet. It's also recommended that I use an electric shaver instead of razors to shave, since cuts, punctures, scratches all spell bad news in a limb with lipedema/lyphedema. In the scheme of things, it's a day-by-day situation.

A friend of mine asked if there isn't a medication I can take to help. The answer is no. There is no medication that can help, and diuretics, diet, or exercise cannot cure my conditions. The cause is unknown, and lipedema is classified as a rare disease.

Anyway, just an update because Thursday's visit was a good one. I think she said my lower legs were down an inch in some areas, which is fabulous. Too bad they won't stay there permanently, but as long as they're not going up and heading to the next stage, I consider it a victory. I do NOT want to end up in Stages 3 or 4.

Life Changes: A Double Diagnosis of Lipedema & Lymphedema

About a month ago, I learned that I may have lymphedema, which means your lymphatic system is compromised or blocked in some way. Earlier this week, after visiting a local outpatient rehab lymphedema clinic, I learned that I have both lipedema *and* lymphedema.

Both manifested later in life; I'll be 50 in December and so I didn't notice any problems/symptoms until I was middle-aged. Up till then, nothing seemed amiss and everything looked and felt normal. In effect, I received unexpected news and it was a double whammy; not just one issue with my lymphatic and vascular system, but two. Neither can be cured, only managed.

I am just now learning about these diseases and they will be a part of my daily routine for the rest of my life. Since most people haven't heard of them and don't understand them, I wanted to share the experience with friends, family, and whoever else may find themselves in the situation I am now.

A friend of mine wanted to know more so she could understand, so I wrote the below-posted information to help explain it as best I could. Then I realized I might as well post this info on my blog to let people know about this new development in my life and to also inform those who may want to know or may need to know more about lipedema and lymphedema.

As I told my friend Mari on Facebook, "Lipedema is rare and it's not caused by what you eat or how much you weigh. Overeating or improper nutrition do not cause it; therefore, losing weight or restricting calories will not affect the diseased tissue/fluid. In fact, I can attest to this, since I've lost well over 50 lbs over the past few years. It does not matter at all. Anorexics can get lipedema, in fact. So when you say 'care for your body,' that care means keeping the skin moisturized and protected so bacteria can't get in dry or cracked skin or feet. Otherwise you can get cellulitis, and that can be deadly. About 27,000 people a year die from that.
Second, the lymphatic system only moves one way—up. That means blockages or a compromised system can't move the lymphatic fluid properly, and that's a big problem! So, care also includes getting the fluid moving through special massage techniques, as well as compression to keep the lymph from settling in the lower limbs where infection can develop.

Manual lymph drainage is necessary (for a person like me who has lipedema and lymphedema as well.) The vascular system and lymphatics are compromised or damaged. Penrose rehab wants me to come in for manual drainage twice a week, but they aren't sure if our health insurance will cover it. They recommend twice a week for that, and compression garments and bandaging daily, from the time I get up to the time I go to bed (at least 12 hours a day). If insurance doesn't cover the therapy, then it's likely I'll have to try and learn how to do it myself (and I'd prefer an expert with years of training do it instead, if possible.)

Neither conditions can be cured or treated with diuretics or medicine. It will only become more severe. There's no way to completely stop it. So, no, I will not be completely healthy in this regard, regardless of what I do. I can only hope to delay it from advancing to a more severe stage. It already affects my mobility right now, so I just do the best I can and go from there.

Bruising is common, and these conditions can worsen with activity and warm weather. Vigorous exercise—especially without compression stockings—will exacerbate the problem and make things worse. So, as you can see, these are tricky conditions that become progressively worse. The best hope is to try and manage them as best as possible. I know this is a lot of info, but there's a lack of knowledge about these conditions, and it's important (at least for me and others suffering from these conditions) that people are educated and don't make assumptions or think it's simply, "Well, lose weight and exercise more." Nope! If it were only that simple! I can get down to a size 1 and I'd still have it. That's why one physician I read called it a "rare and devastating disease," with the psycho-social aspects particularly hard for patients. I was recently diagnosed, but I'm already having issues with it. Having understanding and supportive friends—such as yourself—makes a huge difference for patients dealing with lipedema/lymphedema.

As I said, doctors and researchers don't know what causes it, but they believe it's genetic (hereditary) and also hormonal. It cannot be cured, and it's the same for lymphedema. Both affect your mobility and can result, in severe cases, in being wheelchair-bound or, in the extreme case, amputation of the legs. Because I've been pro-active in getting a diagnosis and treatment, I don't expect the latter two to happen. The person affected must follow meticulous treatment. It's not something that can be ignored, because you cannot reverse it; it can only get worse. About 11% of women have lipedema, and rarely do men get it (only 2, I believe, from the articles I read from Dr Karen Herbst, who is a doctor in Arizona and an expert in this field). It's classified as a rare disease, as I mentioned before. For men, almost unheard of!

Paul, sorry I hijacked the thread, but I needed to write this up for my page and my blogs anyway. Might as well explain quite a bit of it now! Thanks for asking, Mari. I went way beyond what you asked, but now you know the gist of it all."