Saturday, September 7, 2019

What Does Progress Look Like with Lipedema?

What does progress look like? Sometimes that is hard to see, and sometimes it is hard to remember where we started from.

For me, I started my current job in July 2012, and I feared being able to keep it, due to the physicality of it.

It is primarily a desk job, but I park up to five blocks away, and have a lot of stairs (inside and outside) before I can reach my desk.


At the time I started, and even though I was doing aqua aerobics twice a week, I was in a lot of pain to walk any distance, just standing was incredibly painful.

When going down stairs I would turn around and take the stairs backwards (facing the steps), because the backs of my lower legs would hit each step if I tried going down the normal way. Let me tell you, it really hurts when you catch your leg on the step, but it also scared me that it might cause me to fall down the flight of stairs because I would try to step differently to avoid hitting my leg.

When I began training in March of 2013 it really helped me get my core stronger, and increased my strength overall, and improved my mobility. AND helped me with my physical responsibilities at work.

So while I look almost exactly the same as I did when I started this job seven years ago, I know how different I truly am. I try to remember the beginning, where I started, and be mindful and generous with myself on those days when the walk back to the car seems extra challenging.

These are my after pictures, and I feel truly blessed.

Wednesday, August 28, 2019

So You Think You Have Lipedema - Now What?

I don't know what the percentage is, but I would imagine it is quite high, where those with Lipedema initially diagnose themselves, because most doctors still don't know what it is (even though it was first diagnosed in 1940 at the Mayo Clinic).

If you are like me, you took to the internet trying to find out why your legs look the way they do, feel the way the do, and why nothing you try seems to help, and you wound up here. So what can I tell you to help point you in the right direction, like I was when I found a wonderful blog back in 2007...

NOW WHAT?

  1. Understand YOU ARE NOT ALONE! There are millions of us, and you can find the Lipedema Fitness Facebook support group right here. It is only for those with Lipedema, but there is also a public page for those who do not have Lipedema personally, but work with, or care about someone who does. Knowing you are not alone in all of this is a big deal, it can be a very lonely condition, so seek out support, even if it is not in our group, there are a lot of options on Facebook, find one that speaks to you!
  2. Find a Doctor who knows what Lipedema is. Sadly that is easier said than done, I'm still looking, and I was diagnosed in 2007. So if you cannot find a Dr. to diagnose you, then...
  3. Find a Trained Physical Therapist (PT). Therapist are one of our greatest resources. Check out this website from LE&RN (Lymphatic Education & Research Network) about finding a trained Lymphedema Therapist. Yep, I said Lymphadema, not Lipedema, because currently there are no training courses for Lipedema PTs. A trained Lymphedema PT can tell you if you have Lipedema (your stage and type), and they can setup a treatment plan.
  4. What to Expect at the PT apt. They will take your medical history, and they will ask if it is alright for them to lay hands on you, this is because Lipedema can typically be felt just under the skin, one of the only ways currently to tell - the Lipedema tissue feels like rice, or beans. Don't worry, the PT's touch is super light, because a lot of times (not always) the Lipedema tissue is painful to the touch. The PT will also talk to you about treatment.
  5. What are the Treatments? CDT (complete decongestive therapy), which includes MLD (manual lymphatic drainage) massage, wrapping with bandages or special garments, eventually being fitted for graduated compression, exercises that can help move your lymph (something that gets compromised in later stages), and how to care for your skin.
  6. What about Self Treatment? Self care is critical, especially if you are not very mobile, we do a lot to try to keep our condition from advancing. Some of the things we can do is learn how to do self MLD (something a trained PT can show you, and you can also find videos on YouTube),  Keep your skin moisturized, dry brushing, and wear compression (this is one of the most important things I do every single day). I have worn Juzo Dynamic 30-40 grade knee highs since being diagnosed in 2007, and I am honored to be a Juzo Brand Ambassador. I had the absolute privilege to visit their headquarters last month, met their caring and talented employees, and I learned so much about what goes into their products (every stitch is important to them), and I could see just how much they care about those who wear their products. I highly recommend Juzo's website, they have great information about all their products there, and other resources like  where to find a trained compression fitter, and their Steps To Better Health blog, click the link below to read the collaborative approach blog that Dr. Gallagher and I worked on...
    Thank you Juzo!
  7. What exercises are best? Aqua fitness is probably one of the best things you can do, aqua jogging or aqua aerobics are excellent options, the water acts like graduated compression, and it supports our bodies. Walking and biking are great, they both pump our lymph system, as does rebounding (bouncing on a mini trampoline). Yoga and Pilates are wonderful, and I also find body weight training is really good to get our core strong. I started training with my husband in CrossFit workouts six years ago, and it really saved my life. At the time I began training I could barely stand, let alone walk, almost completely immobile. CrossFit helped me regain all my mobility and strength, and I feel really slowed down my progression. Finding what you love is the best exercise, something you can do regularly, even kitchen dancing (one of my favorites).
  8. What else can you do? Vibration machines are great for reducing pain, and helping to move your lymph system, and they come in all price ranges now. Even if you cannot stand on one, you can sit on a chair and put your feet on the vibration plate. Rebounding can also be done on a large yoga ball instead of a mini trampoline, sitting on a stabilized yoga ball and just bouncing  gently up and down really helps move the lymph system. Dr. Melissa Gallagher has a wonderful YouTube Channel, (Here is a great video of hers about Yoga ball rebounding) she is simply fantastic, and has tons of videos and information, I highly recommend following her. She is Atlanta's premier Lipedema and Lymphedema specialist. Eating styles can play a big role in how we feel, some like an Anti-inflammatory way of eating, others prefer KETO (ketogenic, or low carb high fat) way of eating, some are plant based, others stop gluten and sugar. I started with Zone (specific amounts of fats, proteins and carbs based on your body weight and activity level), then we transitioned into a lower carb level and most recently have begun fasting - I feel better this way, but it may not be right for you. The key is to find a way of eating you can stick to, as you cannot diet or exercise away Lipedema tissue, it doesn't respond the same as regular fat. WAL (or water assisted lymph sparing liposuction) is also an option; I have not personally gone that route, but there is a lot of information about it online, my only suggestion, do you research and make sure your surgeon is trained in Lipedema, or they could make your condition worse.
  9. What about the pain? Pain is something we all seem to experience differently, you might not have any, or you might suffer a great deal of pain because of Lipedema. MLD can go a long way in helping with the pain, as does Vibration, Rebounding, and things like CBD and T-Relief gel, supplements, etc. These are all very personal, and things you can research with your PT. 
  10. One last thing. Over the years we have learned that while we all might have Lipedema, we will all present differently, and respond differently to treatments. So we have to do lots of trial and error to see what works for us. My best advice is keep a journal, you will try lots of things, and you can track their progress in one location. Keep your measurements from the PT there, and any other items you want to track. Bring that book with you to doctor and PT appointments. 
OTHER EXCELLENT RESOURCES:
  • FDRS (Fat Disorders Resource Society) - Dr. Karen Herbst has been one of the most important figures in the advancement of Lipedema, I highly recommend attending one of their annual conferences, the next one will be April 17-19, 2020 in Cleveland.
  • Lipedema Foundation - is funding basic and translation research at top institutions to define, diagnose and develop treatments for Lipedema.

Friday, August 23, 2019

Can an Orbital Buffer Really Help My Lipedema?

Did you know athletes have been using car buffers (like this Black and Decker WP900) as a massage tool for years?

I didn’t until a few days ago - when I thankfully learned about it from the Living with Lipedema: Stages 3 & 4 Facebook support group I belong to. 

Another example of how important support groups are, and how important those that share what they are trying are, even something as "crazy" as this idea can be helpful to many. Keep sharing!!!

Athletes are using these buffers to help recover after a hard workout, it feels really good to ease a tired muscle, but massaging muscles post workout can also decrease inflammation caused by the workout, and thus your muscles recover faster.

Another reason they use these massagers is because they help to break up fibrosis.

Fibrosis is a big concern with Lipedema, too, and anti-fibrotic treatments, such as a handheld massager like this, can be used to break up that fibrotic tissue.


As Lipedema progresses, we develop Lymphedema, and chronic inflammation causes fibrosis.

Anti-fibrotic treatments include deep tissue massage. Which can be done by a trained Physical Therapist, or at home with tools like a foam roller, rolling pin, tiger tail, or even a hard lacrosse ball, that you can roll between you and a wall/floor to really target a specific area - or even, it seems, an orbital buffer). 

With all things, you have to seek out what is best for you. Do your research and see what others have tried, and what is available in your area.

The best place to start is with a trained Physical Therapist, someone who knows about Lipedema and can assist you with various treatments. But as you might have learned it is not always easy to find someone knowledgeable in your area, or able to afford continual treatments, especially if our insurance doesn't cover them, so like with everything else, we usually have to find self care options we can do at home, and this is one I'll be trying.

Check out this article for a wealth of information on "Understanding Fibrosis in Lipedema" by Karen Ashforth.


Saturday, August 3, 2019

Saturday WOD in the Park - SLEDGE HAMMER TIME

Regular warmup
(3 rounds of 10 each):
Sit-ups
Push-ups
Pull-ups
Squats
Good Mornings 
Samson Stretch

Followed by flipping and dragging a 300lb. tractor tire up and down the park, and swinging sledge hammers into said tires. 

Coach taught us a new swing - a sideways version (like swinging a baseball bat at a ball, but instead we swung it at the side of the tire, where the tread is). 

We also did overhead swings (where we bring the hammer down from above on to the part of the tire facing up as it lays on the ground), and we practiced technique. Trust me, you don't want to have the hammer bounce off the tire and hit your foot - ouch!

I love strength training workouts like this; They make me feel like a warrior, like I'm fighting back, and they make me feel so strong!

That action, that fighting back, it helps emotionally, too. Working out is us fighting back against Lipedema, trying to stay as active as possible, for as long as possible. That action is so healing emotionally, letting us know we are NOT victims of our condition!

You know what else I love?     Looking at this photo of myself!

That might sound weird, my inner voice is singing "You're so vain, you probably think this post is about you", but it shows all of me, my lipedema legs and arms, and it shows me that I am strong.

When we first started training in the park, I would seek out big trees to workout (hide) in front of, then after we had done so many workouts there I forgot to seek out "shelter", and eventually I didn't just forget about it because I was so into the workout, I wanted my community to see me doing the workouts

That is real change, and I am so thankful to all the body positive folks that have shared their lives with us online and in our own communities.

Together we change the world!

Wednesday, July 31, 2019

Lipedema and Body Positivity

Lipedema becomes very disfiguring in later stages, which can make it extremely difficult to “fit in”, and feel good about ourselves. The psychological distress can be overwhelming.

Early on in my diagnosis I felt this way, it was gradual, and got worse and worse as I listened to the advice being given to newly diagnosed, to not exercise, as they thought it would make our condition worse.  Then in 2013, realizing I was already worse by listening to that advice, I began training in CrossFit (with my husband, a CF instructor).

I have gotten a lot stronger, and reclaimed all my mobility that was lost due to following the advice, but the shape of my body has not changed.

So what did change?

I changed. Emotionally, I changed. I began joining plus size fashion and fitness groups, and following body positive (bopo) people on Instagram. I soon realized I really liked seeing folks my size doing sports, working out, moving their bodies, and taking up space in our world.

I began to realize that I would not say anything negative about any of the bodies I saw in these groups, so why was I saying them about myself? And that began to change how I thought about, felt about, and talked about myself. 

I began to thank my body, I began to love my body. I have no control over having Lipedema, but I do have control over how I respond to it, how I live with it, and I’m so thankful my body is such a fighter.

This artwork came about after I shared a video of my lifting a heavy bag during one of our workouts to a body positive fitness group. A group member, Kristen Pednaud  commented on the video with this incredible picture she drew of me. Kristen is such a wonderful artist, I highly recommend checking out her page on Instagram (@kristenpednaud), or her website: www.dobbydoodles.com - she does pet portraits, too!


I was so touched and fell in love with the artwork, I think I look like a character from the movie The Incredibles! I talked to another Lipedema artist friend about this, how moved I was by it all, and she loved it and asked me to be her muse, which started another series, which I will share soon.

Having someone turn you into art is such an honor. Seeing yourself as art, is life changing.

My journey with Lipedema has been an interesting one. Filled with self discovery, and growing self love, and I’m excited to see where it continues to go. I’m not healed, in fact I’m progressing, as Lipedema is a progressive condition, but emotionally I’m healing more and more every day.

Monday, July 1, 2019

We Did It - Finishing the 4th Annual Lipedema Triathlon


On June 29, 2019 my family and I headed out to the Saratoga Regional YMCA to meet up with friends and training mates, to once again take on the Sprint Triathlon event that has been held there for four years running!


The event would begin in the pool, for a 750M swim - which is 15 laps in their Olympic size pool. It was myself in lane 1, Coach/Hubby and Joel in lane 2, Phylise in lane 3, and Amanda (a YMCA member who has joined us every year) in lane 4. My friend Shawn had to go at 6:30am to do his swim, as he had other obligations he had to get to.

The swim took me 26:15 minutes, shaving 1 minute and 15 seconds off last year's time of 27:30.
Typically in a Triathlon the transition between events counts as part of your time, athletes practice transitions just like the physical parts of their events. The transition between the pool and the bike for me is a long one, because as someone with Lipedema and Lymphedema, it is important for me to shower off right after the swim (to get any chemicals off my skin that might cause irritation; and to then get dried off, apply lotion, and then attempt to quickly put on my compression for the next two parts of the challenge, the bike and walk).

I'm not entirely sure when I started the bike, but after adjusting my seat to position 10 (thanks Annie for the help), I began to try to catch up to my friends and family (who didn't have to go through the transition like I had to).

Last year it took me 55:06 minutes. Because I started so late, I didn't have anyone next to me, and so I just put the headphones in and went to town. This year my girl Phylise was next to me (she has been my weekly gym training mate all year), and her lovely Sister Annie came to cheer us all on (all the way from England). 

You can imagine we did a fair amount of talking - and as such my time was 61:38.

The first couple years going over 60 minutes was a big deal, because the gym equipment actually turns itself off after an hour, I guess it feels you have done enough, or maybe it is to make sure others have a turn, but either way I have learned to watch the time and if it looks like I will not finish in under an hour, I let Gen & Beth know (they are the YMCA employees that help out Ilene, the Aquatics Director). They can make sure to write down the distance when the bike hits 60 minutes, then we wait for it to reset itself and I finish off and any amount is added to my time.
On to the final event, the dreadmill (no, that is not a typo); it is not typically my favorite event on a day when that is all I'm doing at the gym, and is most definitely my least favorite at the end of a Triathlon. I try to play mental games to psych myself up for it, and try to warn others I'm least like myself during this part of the event. We will just leave it at that LOL

This year I was in a pretty good place emotionally when I hit the treadmill, I am always so surprised by how quickly I bounce back after the swim and the bike, and last year Joel was smart enough to figure out that if you select the 5K option on the treadmill, it doesn't time out at 60 minutes.

I grabbed a pink lemonade G2 (gaterade drink) and some gaterade chews, and made my way to the treadmill reserved for me, most were still running, so I was not totally alone, and began the countdown from 5K to 4K, at which point I was going to pause the machine and stretch, take a drink and see if I needed a chew.

Within a few minutes I was trying to make my way from 4K down to 3K, when I would do it all again, pause, stretch, take a drink, assess the need for a chew (they are really sweet, so I try to avoid them if I can). Then more friends showed up to cheer us on, and it was good timing, I was so tired and it elevated me up a bit just seeing them.

3K to 2K and 2K to 1K were brutal, I'm not going to lie, I was totally exhausted, but thankfully still no pain (sometimes my ligaments like to act up and cause awful pain - they are loose, which is pretty normal for Lipedema). I did the same pause, stretch, drink at each interval, and then had a great idea for that last 1K...

I would go live with my Lipedema Fitness group! I had not planned this, so unfortunately they had no idea I was going to be popping on (all sweaty and breathing heavily), but none the less, that is exactly what I did and let me tell you, I will be planning on doing that every Triathlon moving forward because it totally saved me. 

Only a few popped on, but their cheering and telling me how they had done (virtual racers in our event) really kept me going, and we literally counted down every part of that last 1K. I finished this year at 76:42 (vs. last year at 75:57).

So the really incredible part about this year? VIRTUAL RACERS!!! We are officially an INTERNATIONAL event, as we had Lipedema ladies all over the world participating virtually. We had a couple from Australia, from Germany, and even the Isle of Man! Plus a bunch of states all across the USA. 

It was what I dreamed about when I started this race four years ago. I wanted to get as many Lipedema ladies as possible participating in any way they wanted to. Some did just the 5K, some just the swim, others did a couple events, and some did all of them! All badass in my book. 

We want everyone who wants to participate to be able to, no matter their ability - they could choose any part, or a modified version of any part and we would be cheering them along with us.

Next year is going to be our 5th Annual International Lipedema Triathlon and we hope to get even more participation. You don't have to be local, you don't have to have Lipedema, anyone can participate and help us spread awareness.

We want others to know what Lipedema is sooner, to be diagnosed sooner, to start treatments sooner, and hopefully prevent advancing to later stages.

In addition to awareness, I created this event to remind others how important it is to stay active, to fight for your mobility. Lipedema is a progressive, debilitating condition that tries to take your mobility, so while the work we do to stay active cannot be seen visually like someone without Lipedema who would see a loss of weight, muscle definition, etc., we do so to stay mobile as long as possible.

Hopefully by slowing down our progression we give the medical world a chance to find better treatments and one day even a cure!

Fight on Lipedema Fitness warriors - we are stronger together!!!

A huge thank you to Juzo USA for sponsoring us this year, and the awesome shirts they provided every participant (local and virtual)! This company has been so amazing to work with, they share our desire to spread awareness, and there is no way I could participate in this event without my Juzo dynamic 30-40 graduated compression knee highs!

As I sat in my car after the Triathlon, tired beyond belief, I caught a glimpse of myself in the review mirror and started to cry a bit. It is always so emotional for me to realize just how far I have come over the past six plus years (since deciding to stop listening to advice that exercise will make my condition worse, and to start taking back my health). I could barely stand for a few seconds, let alone walk. I am humbled every day, and remind myself when the pain might be creeping in that this life is so amazing, our bodies, our spirits are so amazing. Never give up, never surrender!

A special shout out to all who supported us along the way, who donated on behalf of the event to either FDRS or SRYMCA - both very worthy causes.

We had a few friends not able to join us, one welcomed a new granddaughter into their family, one had a medical emergency of a loved one (luckily he is doing better, wear your bicycle helmets folks), and one was sick herself, all were missed, and we hope they know how much we treasure them all!

Thursday, June 20, 2019

June is Lipedema Awareness Month - Fight For Your Mobility

June is Lipedema Awareness Month and I created the Lipedema Triathlon four years ago to help spread awareness and to remind us to keep fighting for our mobility.

Next Saturday (June 29) @srymca is once again hosting us locally, but it is also a virtual race, you can do in your own hometown!

And this year @juzocompression is sponsoring us! We even got official race shirts!

Sign up here: https://www.signupgenius.com/go/5080448abad2fa57-lipedema3

#lipedemafitness #srymca #juzocompression #lipedematriathlon #wearestrongertogether #lipedema