[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.

 

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. 

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.