Monday, December 14, 2015


There are several different WOD (workout of the day) recovery experiences I have noticed as someone with Lipedema who does CrossFit.

  1. WOD requires a nap because I am totally drained
  2. WOD leaves my arms and legs feeling like rubber bands, but no nap required
  3. WOD leaves me feeling amazing and strong, then the next day I feel sore
  4. WOD leaves me feeling amazing and strong, and then 2 days later I feel sore
What the What? Yep, that last one is always such a shocker, but just a quick google search, and would you look at that, it even has a name...DOMS (delayed onset muscle soreness) or I guess it can even be called "muscle fever" according to good old wikipedia. Ultimately it is the pain and stiffness felt 24-72 hours post WOD.

The good news, the reason muscle soreness is a good thing, is that it lets you know you have muscles, and that what you did the day or two prior was working those muscles. It lets you know you have some control over your body. You may be sore today, but you will be stronger tomorrow!

I will never admit this to my coach, but I actually like the muscle soreness. Shh, you did NOT hear that from me. The reason I like it, is because with Lipedema it is so hard to see the results of the work. Our muscles are hidden under Lipedema fat. Abnormal fat (sometimes very painful fat) that does not respond to diet and exercise. But the soreness I feel, makes me notice all my muscles, even those hidden from the world, and even more detrimental, hidden from myself.

Our emotional health is just as important as our physical health, and feeling in control of our bodies is HUGE. This condition sure tries to take a lot of control away, so anything that can make us feel in control of some aspect of our lives is very important. Fighting to stay fit is an ongoing battle, and for me the fight helps to make me feel strong, the muscles go a long way, too. But the fight keeps me sane, I am taking action against the thing trying to slow me down.

The scary part with Lipedema, is making sure you can tell the difference between muscle soreness from a good workout, and lipedema pain.

Only you can know the pain you are feeling, and only you are the best judge of what you should or should not be doing. CrossFit trainers are amazing people, have incredible training and abilities to make MODs (modifications) to workouts for all different reasons, but Lipedema is a pretty unheard of condition in the medical field and one can imagine even more so in the workout field. So please make sure you tell any coach/trainer, etc. about your condition, the symptoms, and the fears you have.

Unfortunately I have learned over the years that we have to try something, and then notice the results. We have to become our own best resource on ourselves, because even our Lipedema friends/families may respond differently than we do to whatever efforts we are trying to battle Lipedema. From the effectiveness of supplements, to WODs, to compression, etc.

Keep fighting, you are worth it! We are making changes, even we cannot see!

To quote one of my favorite movies, Galaxy Quest...

Monday, November 9, 2015

One Body, One Life

Can you imagine the care you would take of your vehicle, if you only got one in your lifetime?

Photo by Casey Etter-Bobb #badnova 

Take a moment to really think about that, what would you do if you just got one vehicle? What would you pick as that vehicle? Something fast and fun? Something comfortable? Something that could transition through your stages of life?

We each have different attachments to our vehicles, some use them for transportation, some for fun, some even for show, like the picture above from our good friends Thomas Bobb and Casey Etter-Bobb, they were the first place I thought to seek out a photo to illustrate an amazingly well taken care of vehicle. 

The point being, that we take great care of our vehicles now, even when we trade them in every few years, and our bodies deserve at least the same level of care.

You are worth the best attention, the best love,
the best of everything you can muster!

I know some days it can seem overwhelming with the amount of time, care, and attention we put into living with Lipedema, and feeling overwhelmed is when our emotional side needs the most love. But taking the best possible care of our bodies is not just good advice for those of us with Lipedema, it is good advice for every BODY.

Keep up the good fight my friends, you are doing things now that you will continue to see the benefits of for many many years down the road. We don't get to trade our chassis in, we only get the one.

Monday, October 26, 2015

Spartan Slosh Pipe Challenge - Killington, VT

This past month (September) found me in the cheerleader role, as most of my training mates, my coach/hubby and even my daughter were signed up for the Spartan Race at Killington Mountain in VT.

The atmosphere was electric, with music pumping as the energy, nerves, and excitement filled the air. 

Parking was done well, we were close enough to walk in from the lot, but they also had shuttle buses running from the lots to the event if you were short on time or energy. 

Getting checked in takes time (the arrival suggestion they give of 1 - 1 1/2 hours early is a good one), once done we headed to bag check and then to the Starting Line (daughter's heat was at 10:00am, and everyone else at 10:15am).

It was my daughter's first Spartan Race, and she rocked it!

The only downside was the kids were coming in so fast that I missed my husband's take off. But mommy duty called, I had to get over and snap a few pictures of my girl kicking butt.

After she finished, she was hungry, so off to the lodge we went (one of my training mates and the wife/mother of a couple racers was hanging out with us). Lodge food is pricey, bring your wallets, but they do accept credit cards. 

Refueled and seeing a bunch of fun activities setup outside, off we went to check out the trampolines for her, and the Spartan Challenges for us...

The Spartan Challenges are timed events for those in waiting mode (finished racers, pending racers, or spectators like us). The one that caught my eye was the Slosh Pipe, which is a PVC pipe (I think the ladies pipe was 8 feet long, 3" wide and filled 60% full with what I assume is a couple gallons or so of water). 

The pipe is deceiving, as it doesn't weigh much (estimate about 20 or 30lbs), but the water "sloshing" from side to side, and the length of it really throws you off balance, and changes the weight you are pressing.

They gave us a chance to get a feel for it, and then you put your hands on the tape (cannot leave the tape) and ready, set, go - the timer is started and you have to get it up and do as many presses as possible in 60 seconds.

While my friend decided if she could do the challenge (her shoulder is injured), another woman came up to get a feel for it. She had great training and determination, really good form, but you could see the balance portion of the challenge got her attention. After several minutes of trying, she asked if I was ready to go, and just like that, my challenge was on.

We have been working our squats, so I was able to get low, and surprised myself when I got it into rack position pretty quickly, then I began to do my presses. You would get a couple in and the balance would go wonky, and you would need to get it stable again. I was able to get 25 presses in before time was called.

I was pleased with my performance, and stayed to watch a couple others go for it, before heading to the finish line and awaiting our friends/family to come in.  

As we were just about to leave, the woman practicing before me went. She struggled a little getting the pipe into rack position, which really ate up the time, but she was still able to get a good amount of reps in.  When she finished, she walked off the platform and gave me a high five. It was so nice to feel equal with athletes on the mountain.

That is one of the best parts of my training, feeling connected with real athletes, and seeing myself as their equal is slowly taking place within me, too. My husband pointed out that athletes are the last ones to judge, they know the work that goes into it, they respect the work and those doing it.

Fight on warriors, being larger doesn't mean we are not fit, or unable to compete and even win sometimes, too.

I say win, because I was told I had a real shot at winning the Spartan Slosh Pipe Challenge! The man running the challenge came up to me and asked to verify my email before we left. At the time the closest person to me had 15 presses to my 25. I cannot tell you the confidence builder that moment was. Win or lose, I felt amazing!

Huge congratulations to my husband, daughter and all my training mates - you guys killed it! Now off to the hardware store for slosh pipe making materials!

(Update: I did not receive the winning email from Spartan, so congratulations to the winner, I only wish I knew how many she beat me by so I could make sure next time I give her a better run for her money! Spartan HQ said they don't post the results, and they don't know the winning number of presses, the rep in Killington just sends the names and emails to HQ so they can send out the winning email - AND you get a free entrance into another race, how cool, so get yourself to Lowes/Home Depot and make a slosh pipe - so much fun, and great training, just maybe use antifreeze if like me you live in cooler climates.)

Thursday, July 16, 2015

New Goal - Time to try the High Peaks!

One of my friends (Colleen) who helped me to achieve my last goal (finishing the Survive the Farm 5K obstacle and mud run in May) is a runner and in the past couple years started making her way up the High Peaks of the Adirondacks.  There are 46 High Peaks, and they call you a 46er if you hike all of them.

Colleen's last adventure brought her up to her 15th High Peak!  How cool is that?  In my book it is pretty cool.  Her facebook post and pictures of her last hike inspired my next goal - to begin the climb.

Colleen on the summit of Upper Wolfjaw (#11 for her) in 2014

I talked to coach/hubby who said we should wait till the fall, as the heat really is a challenge all it's own in the summer months for me.  Wearing a couple layers of compression from foot to chest doesn't make that any easier.  So we have set our sites on this fall.

Part of me immediately remembered the hilly bits of the mud run and how challenging it was, and this is going to be a hike up a mountain (literally a mountain - I'm not making a mountain out of a mole hill, it is literally a mountain), I must be crazy.

Colleen's 1st peak -  8/15/2010
Coach picked Cascade Mountain (in Lake Placid, NY) as our first, and come to find out it is the first for many (according to wikipedia, Lon Pierce was the very first to make that hike up in 1872).  Not the shortest, but reportedly the easiest.  Ranked 36th in elevation, coming in at 4098 feet, and will be a 2.4 mile hike up.  Wish me luck, and thank you Colleen for the inspiration and photos below.  Turns out Cascade was Colleen's first, too, back in August of 2010...

High Peaks Wilderness Area Details

Colleen going up Cascade
Cascade Summit Marker - Woo Hoo, she did it!
Colleen's view from the top of Cascade
What goes up, must go down.

Monday, June 29, 2015

Gratitude - June is Lipedema Awareness Month

I'm not sure if you know, but 3+ years ago I could barely stand, let alone walk, and as I sit here typing I have 11,468 steps registered on my fitbit.
I have primary Lipedema, and secondary Lymphedema (because it took so long to get diagnosed). Most doctors have no idea what it is, let alone how to diagnose or treat it. There really is limited treatment, and there is currently no cure.
3+ years ago I started a new job at the Temple, one I was not sure I could keep because of the walking involved to get to/from work and the huge flight of stairs to get to/from my office.
My loving husband and soon to be coach began working with me in CrossFit (he is a certified CF instructor and amazeballs at modifications). He had been training others for years, and 3+ years ago it was my turn to be added to the team. We switched eating style to the Zone at that time as well, but we don't consider it a diet, it was/is a change of eating style.
We stopped soda and as much processed food as we can, but we still live. We still share in celebratory cake from time to time, and even have pizza after every 5K we finish.
I have grown stronger and stronger over the past couple years, and I am forever grateful to my coach/hubby and my training mates. You know who you are, and I love you deeply.
Survive the Farm 2015 (Obstacle/Mud 5K)
Couldn't have "survived" it without these guys!
Today after our workout I wanted to mow the lawn, and began on the side yard. headphones on, I am sure I was a sight to those drivers passing by. After the side yard, i moved on to the front yard - more performance of singing and dancing while I mowed. I had a ball! I love mowing so much, and it is a great workout, too.
I started to cry towards the end of the lawn. I felt so good, so blessed, so grateful, and I recalled the beginning of my journey back to regaining my mobility. I looked at the driveway, maybe 50 feet, and I recalled those brutal first steps into my training, and here I was 11K plus more steps and I still felt amazing.
June is Lipedema Awareness month. I am sharing here because I want to thank those who mean so much to where I am now, and to spread awareness, so if there is someone out there in a similar situation, feeling their own mortality, please know that little steps do add up. You are not alone.

Wednesday, June 3, 2015


It is what we do, right?  We give ourselves challenges.

Sometimes others give us challenges, but either way accepting and then crushing a challenge feels A-M-A-Z-I-N-G!

It doesn't matter if it is a mental or a physical challenge, both, or something entirely different, but the act of working towards a challenge (or goal) and accomplishing it is a sure way to make you feel alive.

I've taken to posting my personal challenges on facebook, I don't know if I'm looking for someone to say I'm nuts and talk me out of it, or to cheer me on in the hope it lifts me up when I think I'm nuts for attempting it; but either way the act of posting it out in the open for all the world to see ensures one thing, I will fight like the dickens to crush that goal. (Thank you Mr. Shakespeare for that wonderful expression, "like the dickens")

Fighting for my fitness has become a lifestyle.  You see Lipedema has a way of making you feel weak, both mentally and physically, and it can also make you feel like a victim. Like there is nothing you can do about your condition, that your body will eventually break down completely and you will be trapped inside of it like a prisoner on death row. That sounds dramatic, but trust me when I say IT IS REAL.

Fighting back in whatever way I can is the only way I have found to take my life back.  I am living with Lipedema, I am not dying from it.

Training on the Ropes Challenge Course at Ndakinna

So here is my challenge for you - spread awareness about Lipedema.  Tell anyone and everyone who will listen, find creative ways to do so - there are some great videos on youtube, created by wonderful people all over the world, like the one below from Sherry Simoes (Lipedema Network Canada).

The more we spread awareness, the more lives we touch, the more we learn, the more we grow and the closer our chances of finding other life changing things we can do for those of us living with Lipedema.

Saturday, March 21, 2015

Bear of a WOD

Saturday WOD (workout of the day) - (20) slam ball with 20lb medicine ball, bear crawl across the dojo, (20) American kettle bell swings with 25lb KB, repeat for 12 minutes. I got as far as finishing the bear crawl into the 4th round (so 80 slam balls, 7 bear crawls, and 60 KB swings).
It was brutal. After the first round coach/hubby alerted everyone that 3 minutes had passed. 3 MINUTES - what the what??? We were all dying, and breathing was hard and fast; head down and I just focused on each movement as I was in it, keeping form as good as i could, and before I knew it we had 40 seconds left. As my hand crossed the finish line on the last dojo bear crawl, and coach called time, I slumped down to the floor. Not sure if it was a good position or not, thinking I could probably breath better if I stood up, but not being able to move for a few moments.
Slowly I turned over and sat up, a teammate brought me my water bottle (she is such a good partner), and slowly the breath settled, and the heart rate came back to normal. Small discussions, and some of them began handstand walking (impressive to behold); I could not move, and I was OK with that. I just put in 15 minutes of warm up and 12 minutes of actual WOD and I felt good - NO, I FELT GREAT!!!
I knew I had just done a really hard workout for me. I was proud as hell I made 7 trips across the dojo on my hands and feet (coach is trying to prepare me for the survive the farm race so lots of bear crawls in my future).
I sat talking to another teammate, as she asked if coach liked thinking up various tortures for us, and I started breaking down what he actually does... he looks at his trainees (he calls us athletes) and knows what is hurting them (shoulder, knee, etc.), what they are training for (half marathon, spartan race, survive the farm, being able to get up off the floor, etc.) and he modifies and creates workouts that push us, that challenge us, that make us see incredible results when compared week to week, month to month and year to year.
i am blessed to have this coach also as my hubby, truly blessed. I pray that all of you can find a coach with similar ability, because it truly makes a huge difference in what you think you can do, and what you can actually do. We can do it. It doesn't matter what our size is, what our mobility is, we can find ways to use our bodies to move our bodies.
Sorry, very long post, time for a nap smile emoticon - happy Saturday!
(taken from our Lipedema Fitness Facebook Posts)

Monday, January 26, 2015

"Move into your life (Making Exercise Work For You)" - 2014 FDRS Conference Presentation

In September 2014, my coach/hubby and I were honored to not only attend our first Lipedema Conference, but to also be there as presenters, and share our story of how fitness has given me back my mobility and the ability to Live with Lipedema.

Here is the video of that presentation, as found on Youtube, as are all the presenters.  I highly recommend you find the Fat Disorders Research Society 501c3 channel at Youtube and watch them all.

FDRS put on an amazing conference and it was very wonderful (and emotional) to be in a room full of 100+ other women just like me, living with Lipedema.

The video is about 24 minutes long, the opening is a warm-up led by my amazing husband Bob, which is typical before all our workouts, to ensure joints are loose and ready to be worked, and then I take over the mic for some info on how my life has changed since my diagnosis...

Wednesday, January 14, 2015

Shake It Up Baby: Using Vibration for Lipedema

Cute Pink Lotus Hoodie - huge fan!
WBV seems to be all the rage these days.  What is WBV you ask?  Whole Body Vibration.

A quick search online will tell you WBV is nothing new, but possibly started as far back as the 1800s. I read about treatments for sanitarium patients, and studies for russian astronauts.  From Michigan, to East Germany, to Russia (with love - sorry couldn't resist).

But WBV was new to me, and one of the best things I took away from attending the FDRS Lipedema Conference in Washington DC last September was information about a vibration machine called the Vibra Pro.

Dr. Peter Prociuk was there as a vendor, and as my daughter led me over to the side of the room to "get a ride" on one, I was introduced to the latest in vibration treatments.

I stood on the machine (similar feel to standing on a treadmill or elliptical machine in a gym, complete with hand rails if you need them for stability), and the good doctor turned it on. Slowly at first, then gradually increasing the speed.  It is like standing with your feet on both sides of a teeter totter and once the power was turned on it rocked your legs up and down.

Well you can imagine the view from behind was an interesting one, as this machine began to shake all of me, and I do mean ALL of me.  If you know anything about a lippy lady, she has, as Sir Mix Alot put it so eloquently - Baby Got Back.  And my backside was giving quite the performance, so slightly embarrassed, I quickly found my way back to my seat after only about 5 minutes.

Further research online would tell me WBV could help with metabolism, reduction of stress, and the key words "improve lymphatic flow".  That is what every lipedema patient wants to hear.  It is what we are constantly trying to improve.

With that in mind I made the call and purchased the machine, and have had it since about October. I have tried to use it faithfully every day, but alas have not always done so, the holidays can be brutal to diet and exercise.  But I do try to get in at least once, and on good days twice, each day (10 minutes in the morning and 10 minutes at night).  So far I just stand on it, a few squat poses here and there.

I have not noticed a drop in weight, but I have noticed some muscle toning, and better core strength.  It is not my only source of exercise.  I do modified crossfit a couple times a week and in warmer months like to get outside and walk/hike.  I was also going to the pool for aqua aerobics once a week, but for now I stopped that to see what the changes would be with just the WBV and my other crossfit workouts.

I am slowly feeling changes in my legs, starting to feel knees again, not sure if the WBV is to thank for that, or the extended time doing the crossfit, but I'm not stopping either to find out.  It goes back to trying new things and seeing what works and what doesn't work for each of us with this condition.

I'm willing to give it some time and see how things progress.  Is WBV right for you?  I am not the person to answer that for you.  It was about $1100 for our machine (which was a conference price and far below prices I've seen online for the same machine), that is not something everyone can spend to test out (I thank my sister-in-law for mine).  The best suggestion, check your local fitness clubs/gyms - a lot of them are carrying them and try it out there first to see if you would benefit from it at home.  Even PT offices carry them as well, call around in your area and see what you find.

I am grateful to be able to use it daily, and feel it does benefit me, if nothing more than emotionally, it is ten minutes of quiet time (and the machine itself is fairly quiet - more so than I thought it would be), I put on some headphones and rock out.  I am optimistic at the changes I'm noticing in my legs, and hope to report back at a later date that the WBV had something to do with that.

There are claims that you can use WBV for weight loss.  Is that possible?  I'm not sure.  I would venture a guess and say no, at least not all by itself, but a clean eating lifestyle and other exercise added, I think it can go a long way to help you feel better.  If lymphatic flow improvement alone, getting the sludge moving about and out of you is bound to make you feel amazing!

UPDATE: It is October 2023 and I still use this same machine for 20 minutes every morning as part of my morning self care routine.