Lipedema Q&A

This is a long overdue post on how I manage my lipedema – I’ve been inundated via blog, email, facebook and instagram by women who need help and have questions, so it took some time to collect my thoughts. There will be follow-up posts.

Lipedema: this unknown (often referred to as “painful fat disorder”), misunderstood, autoimmune disease, rarely diagnosed. Much like having a “lazy pancreas” with my type 1 diabetes, my lymphatic system is also lazy. It’s pretty important – drains all of the fluid/toxins from my body, and when it’s lazy, it has a whole host of trickle down effects, especially complicating type 1 diabetes.

Much like the constant pressure and fear of potential future complications from living with type 1 diabetes, there is also an added pressure with lipedema to maintain weight and take great care with your legs/infections. Once a person with lipedema is diagnosed (there are stages from 1-5, 5 being most severe), it is extremely important to maintain weight (cue insecurity). If a person does gain weight, although it can be done it is so very difficult to lose because of the fat tissue structure. Have you ever tried to maintain your weight? Have you tried to maintain your weight supplementing insulin with type 1 diabetes? Have you tried maintaining your weight with T1D and lipedema? It’s a party!

Here is how Lipedema has/does affect me (it can vary):

  • Symmetrical water retention in legs, but ankles/feet not affected
  • Painful/tender tissue to the touch (especially if any sugar is consumed)
  • Very easily bruised
  • Puffiness
  • Broken blood vessels/vascular issues
  • Lymphatic fluid retention (in neck, behind knees)
  • Overall feeling of being “clogged” or congested

I am supposed to wear medical grade compression stockings from the ankle all the way to my waist daily, underneath my work clothes. After I was fitted for them and left the office with them on, I took them off and they haven’t moved from where they currently sit – that was two years ago. Not only did I find them extremely itchy, they didn’t breathe and I was hot. In addition, when you need special rubber gloves to get them off and on, it isn’t exactly ideal when trying to go to the restroom. I work up a sweat just trying to get them down. I was also supposed to attend lymphatic drainage massage by a certified lymphatic drainage massage therapist – which, I can appreciate, but 5-6 weeks, for 3-5 times/week. Sorry, couldn’t commit.

So I set out on my own.

Here is how I’ve been managing my lipedema (which can mostly be encompassed by lifestyle changes):

  • Real foods are all I eat. I consider myself Paleo (firmly believe in the foundation of it), but am probably 75% vegetable based (by choice!)
  • I don’t eat soy, (commercial) dairy, corn, legumes (beans and peanuts), grains, very little sugar (the real stuff I mean, as in, fruit), no artificial anything, no soda, no gluten…
  • I do eat lots of fat (ironic no? I have this fat tissue disorder, hmph) vegetables, coconut oil, avocados, smaller amounts of fruit, seafood, eggs, meats, nuts, oils, coconut, extra dark chocolate, some seeds
  • I exercise regularly, and have even increased over the last year. I’m not talking crazy intense cardio sessions as I don’t believe in putting your body under that chronic stress regularly. I do muscle work, pilates, yoga, stretching, and I walk. I walk, and walk, and walk. It is the one thing that I just cannot live without (mentally, too!!!). I also go for long bike rides, hike, and run occasionally. Overall, it’s mainly walking/toning.
  • When I exercise, I wear athletic compression on my calves, and even when I’m just home around the house
  • I place an emphasis on lots of quality sleep – not always easy or doable, but it does wonders  for body and weight
  • I take Epsom salt baths weekly, to draw toxins out
  • I put great lakes grassfed gelatin in my coffee each morning for tissue/joint support
  • I make and drink bone broth regularly (amazing for skin/tissue/gut health)
  • I drink a lot of water/hot tea
  • I skin brush – heard of it? I use a soft bristle brush, and start at the very bottom of my legs, and do 10-15 strokes straight up to the knee, then start on the knee, up to the hip, etc. all the way up to my arms/neck. It removes dead skin cells, but also “wakes up” your nerves and encourages your lymphatic system to start pumping
  • I get a massage almost weekly. It has been really beneficial for me. I get a 90 minute deep tissue, but only deep on arms/shoulders/neck/head, and much lighter pressure on legs. I’ve been working with my same massage therapist for over 2 years, and she knows my body well. She starts at my ankles and lightly pushes the fluid upward to help with drainage. There are times when I am far more tender than I normally am, so I communicate that, and she’ll adjust accordingly
  • I moisturize occasionally, not a big fan, but I try
  • I try not to cross my legs and put pressure on the already compromised vascular system
  • I read, and do a lot of research on the human body, interactions, correlations, food, nutrients, etc.

In a nutshell – that’s how I’m managing my [stage 1] lipedema. I cannot stress how important it has been for me to learn as much as I can. I thought for years I’d been at my ideal weight for my “body type” and that I’d always have “hips” because I was born into that. Not so. Small changes here or there and learning more and trying new things, I went from 145 to 120 (and now you can see my calf muscles/ankles!!!). I wasn’t even trying to lose weight.

So, for all of my lipedema friends without knowledgeable healthcare and feeling alone, I understand. I understand your frustration, concern, pressure and worry, and I am here to answer your questions and help you. I’m not a doctor, but I live it, and this is what has helped me.

Spare a Rose

Valentine’s Day, the day when probably more flowers are purchased than any other day of the year. This year, Spare a Rose, in support of children living with diabetes in developing countries in desperate need of supplies to live.

The Spare a Rose Campaign. Seth and I spared 2 Dozen roses this morning. Consider sparing what you can.

Spare a Rose

10 Years-Then and Now

What a difference 10 years makes.

Then: acne (all over), round face, out of shape, cellulite, restless sleep, smoker, eating processed junk, high cholesterol/triglycerides/blood pressure, no type 1 diabetes or diagnosed lipedema, much larger calves/legs. Weight, 120 (diagnosed with type 1 diabetes and started an insulin pump, rocketed to 145 over the next 7 years).10 Years Ago

Now: Clear skin, best shape of my life, no cellulite, sleep like a baby, non-smoker, cooking, leaner than I ever have been, type 1 diabetes and lipedema diagnosis, much smaller legs, digestion issues nearly gone, Paleo. Weight, 122.Now Photo Combined

They say that with age comes wisdom, for that I’m thankful. I do wish I’d found a healthier path sooner, but better late than never. I reached a point when I mentally decided to just let go of this need to “control” and learn to love myself, somewhat of a relinquishment, and what do you know. Shit changed in a big way.

Walking

I walk everywhere, and then some. I absolutely love walking and I rarely go a day without doing it. It has become a drug for me, and helps keep me balanced. If I have stuff going on during the weeknight, I still go walking by the time I make it home even if I am tired, because it’s that important for me. If I only have 15 minutes, I still go – because that 15 minutes of fresh air is priceless. I’ve been thinking lately what am I going to do if/when we have to leave San Diego where I can’t walk outdoors year around?

A couple added bonuses: regular walking greatly helps with maintaining weight, and if you’ve lost weight, helps keep it off over long periods of time; it’s less impact on your body, all around (joints, stress response, etc.); and a major added bonus, it keeps my blood sugar (having type 1 diabetes) stable with consistent insulin sensitivity. Major wins!

I was downloading my Garmin this morning and decided to look and see how many miles I’ve walked so far this year: 545.37 miles. Holy hell! Guess I really do love it.

Lazy Pancreas? Lazy Lymphatic System!

Exactly one year ago today, I received the diagnosis that I have (stage 1) Lipedema. I had no idea what it was at the time, but the more I learned, the more that so many things with my body now made sense; however, knowing, didn’t make it any easier. Lipedema is a rare autoimmune disorder related to adipose tissue, and the lymphatic system. Much like my pancreas is (extremely) lazy, my lymphatic system is as well. Meaning when my tissues have fluid in them, they can’t drain themselves and filter properly. If I am sick, it’s rough because all of that junk just sits and goes nowhere. Toxins galore. In addition, I have to infuse insulin to live because of type 1 diabetes, and this causes issues with inserting insulin pump sites. More often than not, they’re painful, bloody, ooze, bruise and don’t work well. Not ideal when you need it for survival.

Probably since I was about 14 years old, my lower legs have always been what I called “puffy.” (ask anyone that knows me well, I have never worn shorts, or really shown my legs at all). Less so when I get up in the morning, but by the end of the day, swollen. They’re very sensitive to the touch and bruise very easily. I was always told I just retain water and should take a diuretic. I’ve also always had hips, not necessarily a bad thing, but if I gain weight, that’s the very first place it goes. What I didn’t know, is all along I’ve had Lipedema. It isn’t just, “oh, it runs in the family,” or “all women gain weight there first,” it is actually something else.

There is no cure, and it’s pretty misunderstood as to what causes it. I can tell you, that it probably scares me more than type 1 diabetes. There, I said it. One year into the diagnosis, I still can’t think much about it in one sitting, because I become so totally and completely overwhelmed. (See why here). I had a few doctor’s appointments, was fitted for medical grade compression stockings, and was given a plan to begin lymphatic drainage massage/decongestive therapy. My doctor, who is extremely well respected and amazing, moved to Arizona to continue her research-welp, there went one of the only local San Diego Lipedema doctors that knows anything about it! I got my compression stockings (from the high waste to the ankle) that I’m supposed to wear daily. I put them on at the doctor’s office, and haven’t touched them since. They’re itchy, so tight I can barely breathe, and just downright horrible. No way in hell I’m wearing those every day underneath my regular clothes. And I never completed the lymphatic drainage massage/decongestive therapy-again, very few people that can do this effectively, AND it had to be 4-5 times per week for up to 6 weeks. Argh.

So, I just decided to continue on my path of healing my body with food, and getting more and more clean with eating and lifestyle choices. It’s been a very slow transition, but the effects are becoming more and more evident. Not having done anything that the doctors told me I had to do (that’s how I roll, always have), I am leaner, and healthier than I ever have been in my life, and am able to do things I never have, as in buy high leg boots. This is extremely rewarding to me, because I’ve never been able to zip them past my damn ankle.

I’ve received and continue receiving a lot of judgement for not eating grains, for saying no thank you when there’s birthday cake and doughnuts in the office, and when I eat lots of bacon. Well, this is why. I’m taking control of my health and body. The women that make snide comments toward me about how “skinny” I am-can kiss my mother fucking ass. I work hard to be this way, to be healthy, and they’re missing the big picture. It isn’t about being skinny, it’s about feeling good, and being physically and mentally strong. THIS is why I’m so passionate about food and the effect is has on our bodies.

I feel good, I’m buying boots, and I have ankles.photo 2 (15) photo 3 (9) photo 4 (3)