Friday, November 19, 2021

Lipedema Fitness: Peloton Century Club

It’s just a shirt, right?  The Peloton Century Club shirt. 

For those that do not know, it is a shirt given by Peloton to those riders who reach 100 rides, and by doing so, become part of the century club.

This may not mean much to some, 100 rides may not be challenging to them, but for me it represents so much more than 100 rides.

I learned part of Lipedema is that it is progressive, and it tries every moment of every day to take your mobility. It is why for the past nine years I have been posting about the WODs we do, the Lipedema Triathlons, and most recently my Peloton rides. 

I started the peloton app because after menopause my Lipedema symptoms progressed, and I began loosing mobility again. Walking has become harder. It felt like I was loosing the mobility I had fought so hard to reclaim. It is a scary place to be.

Riding my stationary bike has given me some renewed hope, and while physically good for me, emotionally it has been everything. 

Lipedema makes you feel vulnerable, like you have no control over what this condition will do to your body, but taking action physically, keeps me hopeful. Keeps me feeling like I do have some say in what my body does. It is hard to explain if you have never faced loosing your mobility. It doesn’t have to be all or nothing, #allorsomething is just fine for me.

I look forward to putting this shirt on tonight when I take the Foo Fighters ride, and make my way to my 200th ride!


UPDATE: the ride was amazing! Was bookmarked, and will be taken many more times! Great ride to break my shirt in… and got a 10K in under 30 minutes!


#lipedemafighter #lipedemafitness #lipedemaawareness #nevergiveupneversurrender #lipedema #pelotonateverysize

Wednesday, October 27, 2021

INTUITIVE MOVEMENT WITH LIPEDEMA FITNESS

Great Camp Sagamore
By now most of us have heard of intuitive eating (a style of eating that promotes a healthy view of food, and our bodies). Eating should be intuitive, eat when you are hungry, stop when you are full; but so much damage has been done over the years in the diet industry, that it makes it challenging to rely on our view of hunger.

There is so much guilt that revolves around food and diets, physical vs emotional hunger, etc., that undoing the damage may take years, but it is more than worth the journey.

Intuitive movement is the same thing.

What is the common factor in both? Being intuitive. Being able to listen to your body and the clues it sends out.

Lipedema has actually given me a more robust understanding of my body, because I've been listening to it's clues for years now - is today's pain different than yesterday's? Is it Lipedema pain, or sore muscle pain? Am I having more swelling? Did something I eat cause the swelling?

All these clues present themselves, and as we learn what the clues mean, it changes how we see our bodies. It guides us - I feel tired today, I need to rest. I feel stressed today, I should take a HIIT Peloton cycling class (because for me, it lets me leave my world stressors behind, and let go for 20 or 30 minutes).

There are many places to learn more about intuitive eating, 
this post is about INTUITIVE MOVEMENT.

The first step to intuitive movement, is learning to listen to your body. 

It doesn't matter what everyone else says is a good fitness routine, it doesn't matter what everyone else says is the best option for Lipedema bodies. What matters is what your body is capable of doing right now, and what it enjoys doing.

Keep it simple, ask yourself what movements are fun? 

It doesn't have to be typical gym based workouts, maybe you like bowling, or gardening? Maybe you are like me, and like to take photographs; so build those things you find fun into your activity. 

We recently went glamping at Great Camp Sagamore, and I spent the majority of the time taking in all the nature around me, it was glorious! I woke with the pending sunrise and walked to find the best spot to see it come up; I heard the rapids and sought out the origin, I caught a glimpse of an old stump, full of adorable mushrooms, and my fairy fantasies took flight. I have wonderful photo memories, and walked all over the campsite, not once thinking of it as being active.

And when I sat on the back porch of our campsite, having my breath taken by the incredible lakeside view, my bike plans quickly washed away, and I knew my body needed to just be still and take it all in. 

We need to change how we see being active. 

It doesn't have to be running, biking, swimming, etc. (unless that is what is fun for you). Bodies want to move, need to move, so lets start doing more of that, in ways that honor our bodies, in whatever they need at any given moment. All movement is good movement.

We need to understand movement doesn't have to be this big, long, thing. Running a marathon is great, if that is what you like to do, but if you prefer a quick walk with your dog around the block, guess what? THAT COUNTS!

#allorsomething is a great way to look at it; I think people get caught up in what they think exercise should be (in fact the word exercise alone is triggering). It doesn't have to be all or nothing, all or something is pretty awesome, and gets you moving, and that is the goal!

We started saying all or something in relation to the annual Lipedema Triathlon we created several years ago. It is a sprint distance (750M Swim, 20K Bike, 5K run/walk), but I wanted anyone who wanted to participate, to feel like they could, so it has always been open to only doing the swim, or doing part of the swim. However you wanted to participate (however you were able to participate) was perfectly acceptable, it fact it was awesome!

We also need to undo the relationship between movement (fitness, exercise, whatever you want to call it) and food. It shouldn't be seen as a way to undo something you ate, that you feel guilty about. That is emotional abuse. 

And why would you ever want to move your body for fun, when you have trained yourself that you move to compensate for "poor food choices".

We need to learn to be nice to our bodies. To listen to our bodies. To have fun with our bodies in whatever way that looks like to us.

We only get the one body, and it is pretty amazing.

Movement is good for Lipedema bodies, that we have learned by personal trial and error, no longer are we being told it could make our condition worse. But the movement is all so personal, what works for me, may not work for you, and if you are struggling to begin, feeling overwhelmed, start simple, start where you are at, with what you like to do. 

Don't get me wrong, I also love CrossFit workouts, and I love a hard HIIT ride on my bike, it is emotionally healing. But I learned to listen to my body, I don't have to do the ride any other way than what feels right in the moment. If I can't pedal as fast, then I adjust to what my body needs, listen to the music, and yes, I sing out loud; I let go of my crazy day, and in the end, I feel better, not just physically, but emotionally, and that is what it is all about.

The goal for me is learning how to work with my body. I look for ways to improve my strength, balance, mobility, etc. It is the long game for me, I want to challenge my body, so I can improve in my goals, but I also want to be accepting of where I am at right now.

Remember:

  • Listen to your body
  • Learn the clues it sends you
  • Be present when moving
  • Do what brings you joy
  • Rest is important, too
  • Be flexible, have options if life gets in the way
  • You have to be a priority in your life
  • Movement is part of Lipedema self care



Monday, October 25, 2021

LIPEDEMA FITNESS: PELOTON CENTURY RIDE CHALLENGE

On November 6, 2020 I signed up for the Peloton App, and let me tell you, it was a game changer.

I picked up a bike in 2019 for the at home version of the 5th Annual Lipedema Triathlon (due to the pandemic, the Saratoga YMCA was closed and couldn't host us, like they had for the prior 4 years).

It worked, and I rode in 5 minute increments, to reach my 20K triathlon destination.

As I was sharing with my sister (a huge Peloton fan, she has the bike and was very close to her 500th ride) how not fun riding the bike was for me, she said "you need to try Peloton".

But due to my late stage Lipedema, I am too heavy for the weight limit of the Peloton Bike, BUT, while I was on their website looking into it, I saw they also offered the App for folks with their own bikes; the bike was not a requirement!

I signed up for the app on the spot, and had 30 free days to see if I would use it, and if the monthly fee would be worth it for me. IT WAS!!!

I, too, am a huge fan, and was getting closer and closer to my 100th Ride (they call it the Century Ride), so initially I set a goal to reach my 100th ride by year end, until I completed my 75th ride on Sept. 30th, and was reminded that my One Year Anniversary with the Peloton App was on Nov. 6th; in that moment I decided to up my game, and try to reach my 100th ride by my anniversary date!

It would mean 25 rides in a month and 5 days, and one of those weeks we would be camping in the Adirondacks, with no access to my bike.

Well I just finished my 91st ride (with Robin Arzon) during my lunch break today, and am in the home stretch of my challenge, that I hope to finish with Robin on 11/5/21 at 5:35pm ET for her HIIT Ride! Click that link to join us if you like, we would love the company.

This will be my 100th Ride, and I'll be in the Century Club once I complete it! I only have 9 more rides, and 11 days to complete them in, and all I can say is, we've got this!

🚴🏻‍♀️

Tuesday, September 28, 2021

LIPEDEMA FITNESS: BIKE RIDE PROGRESSION

Someone asked me when I started riding (after reading my recent 10K post), here is a bit more history of my experience…


I used to ride a stationary bike at the gym, way back before my diagnosis with Lipedema in 2007; it wasn’t my favorite activity, I thought it was a bit boring, if I’m honest.

When I was a kid we rode our bikes everywhere, and I loved it, but a stationary bike is not the same.

At the gym in the 1990s and 2000s, I would use the treadmill, the bike and an elliptical machine (in addition to the more fun weight training and boxing style classes), trying to figure out why my body didn’t respond to anything I was doing physically to lose weight.

I was a bit of a cardio Queen back then, spending hours at the gym, with headphones on, going from one cardio machine to the next. I liked being active, and in order of favorite machines, it would have gone…

  1. Elliptical (most favorite)
  2. Treadmill (2nd favorite)
  3. Stationary Bike (least favorite)

The first time riding a bike again, since my Lipedema diagnosis, was in June 2015 - it was for the 1st Lipedema Triathlon. 

I was so happy I could fit on a bike, because many I had tried didn’t work with my size/shape, but I found one at the YMCA (who was hosting us for the Triathlon) - it did require help getting on (from coach) - adjusting seat height, etc., but I would ride that bike once a year, for the annual Lipedema Triathlon, for four years, until the pandemic would close our gym.

That is when I had to figure out an At Home version of the Triathlon, so I bought a bike off Amazon, specifically for the Tri coming up in June (2020), and I would begin doing five minute rides (about 1 mile in distance) as training.

I still found riding the stationary bike boring, even watching music videos on YouTube, (but YouTube was better then just listening to my music, it was also visually distracting).

On June 27, 2020, the 5th Annual Triathlon, my goal for the bike portion was to do 5 minute intervals, then stand and shake things out, stretch my calves, etc. and hop back on for another 5 minutes. I would need to do 12.4 miles to reach the 20K distance, and tried to keep the breaks to 30 seconds each.

It worked, and I was able to do the full 20K ride that way. I also did rowing as a replacement fir the swim, and mowed the lawn in place of the 5K walk.

I would use the bike occasionally, as menopause took a toll on my Lipedema, and my mobility took a hit, walking became more challenging again, and I knew I needed to seek out other ways to stay active and move my lymphatics to keep my progression as under control as possible.

That is when my sister was talking about this upcoming Peloton ride she was excited for. She had me log in, as it was live, and she was right, it looked like a lot of fun.

I started looking for spinning classes on YouTube, and there were a few, not Peloton, but still fun, and I liked them so much better than watching videos; and it didn’t require me searching for playlists (it was the instructors job to find the music)!

I went online to find out how much the Peloton bike was, because I was running out of free spinning class video options on YouTube, and that is when I found out Peloton offers something called Peloton Digital, where you could use your own bike, but still have access to the live and on-demand classes. They offered a free 30 day trial period, and then if you continued, it would cost $12.99 per month.

You don’t have all the bells and whistles of the official Peloton bike, but for almost a year now I’ve been using the Peloton App with my own bike, and I love it! Me, loving a stationary bike! Highly recommend it to everyone, all the time.

On November 6, 2020 I signed up for their free 30 day trial to see if I would use it, and have been using it ever since. I just finished my 74th ride, and shooting to get to my century ride (100th) by the end of the year!

I had built up to 20 minute rides by the time I got the App, and started with once a week beginner rides, and wanted to work up to 3 times a week. 

Then I wanted to go from a 20 minute ride to a 30 minute ride, and that went well. I had a couple family emergencies come up, that required travel, and I would not have access to riding; as soon as I was back home, I would get back on track. Life happens. We adjust as best we can.

A couple weeks ago I started riding during my lunch break, which meant a 20 minute ride, but I am trying to build up to 5 days a week. Last week I got 4 rides in; worked out of the office on Wednesday, so no lunch break ride that day. Hope to do the same this week!

MY STATS: My 1st ride was with Alex Toussaint (awesome trainer), but I don’t see my stats for that ride, so my 2nd ride was with Cody Rigsby (also a good trainer, and currently on dancing with the stars)…

  1. 4.3 miles in 22:44 minutes (11/10/20)
  2. 5 miles in 21:30 minutes (9/28/21)
Every trainer is unique, I suggest trying out different ones to see which you like best. There is a filter feature on the app, where you can filter rides by duration, trainer, music, etc., which helps you gear rides to your liking. I’m a music focused person, and have several trainers I really like… 
Alex and Cody I’ve mentioned above, and huge fans of Robin Arzon, Jenn Sherman, Bradley Rose, Ben Alldis, Sam Yo, Christine D’ercole, and recent fav, Kendall Toole. But honestly I keep finding more and more I like, take them all for a spin, and see who you mesh with.


Friday, September 24, 2021

LIPEDEMA FITNESS: 10K PR

Since starting the Lipedema Triathlon in 2015, my goal has been doing the 20K bike portion in under an hour.

While the first 4 years were in the gym and straight 20K rides, I think only one was under an hour. FYI the gym bikes time out at 60 minutes, initially the reason for my goal.

Menopause (and the pandemic) had my Lipedema symptoms growing worse, and my mobility took a hit the past two years.

Last year’s (2020) bike portion was #athome (due to the gym being closed) it was in 5 minute increments, and last June (2021) was done in 2 (30) Min. Peloton Rides (6.59 on the first ride with Robin, took a break and then 5.81 on the second ride with Alex).

I’ve been riding pretty regularly via the Peloton app and my stationary bike (I picked up one off Amazon for the 2020 triathlon). 

On August 31: I did a 10K in 29:42, woo hoo, under half an hour…

Tonight - I did my 10K in 27:22!!! I’m so excited!

It was done in a 30 minute HIIT ride with Benjamin Alldis, and it was a PR! I knew I was on track, as my 5Ks have been under 15 minutes during my regular 20 minute lunch break rides. This was an “it’s Friday night, the house is quiet, so let’s see how we do with the 10K goal” ride, and I danced off the bike realizing it was a personal best!

I’m halfway to my 20K in under an hour goal. Next I’ll work on getting to a 45 min. ride.

PLAYLIST HIGHLIGHTS:

  1. Maroon5 - Animals 
  2. Sean Paul - Temperature 
  3. The Prodigy - Fire Starter 

Great Ride!

Wednesday, August 18, 2021

Let Go of the Blame: Having Lipedema is Not a Personal Failure

I read this over the weekend, let go of the blame.

This statement was two fold for me, a great reminder that our diagnosis is not a personal failure (even though our society might try to shame us into believing our actions are the reason for our shape); but also, that treatments, supplements, etc. that do not work are also NOT a personal failure. 

We are so different and have been learning how we present differently, and respond to treatments, supplements, eating styles, exercise, etc. differently. 

Think about how that can be so damaging emotionally. 

To continually try new things and continually not see results, that not only those without Lipedema see, but even those with Lipedema might see.

It is a constant effort to be compassionate to ourselves. Sharing with each other makes us stronger physically and emotionally.

#wearestrongertogether 

(Original Lipedema Fitness Instagram post date September 2020)

Sunday, August 15, 2021

Lipedema Fitness: How to Modify Workouts

Had an interesting conversation with my coach re. how someone without a trainer could learn how to modify a workout?

It came about, as part of the workout yesterday was a 1/2 mile run (with a minute rest) followed by 1/2 mile run.

Running is not a good movement for me, so right away my first MOD is to walk. 

But how far? What is the equivalent WORK for me vs. my training mates, for whom running is a fine movement?

The easiest MOD I’ve come up with over the years is time - I walk for the same time as my training mates run.

It keeps us doing the movements of the workout at roughly the same time, ensuring we get in all the components of the workout. 

Whereas if I did it “as prescribed” I would take longer, and miss the next movement(s) of the workout.

A lot goes into the WORK Coach plans for his clients who have a wide range of abilities. He really is brilliant.

But what if you don’t have a coach? What if you don’t have mates to time yourself by? How can you modify the WORK?

This came up when I was recently traveling. 


Coach said:

WORK = FORCE x DURATION

If I want to do the same WORK I can simplify this down, as a way for me to calculate it on my own.

When moving our bodies through space (running, walking, etc) is part of the workout, the FORCE would = my body weight (times) the DISTANCE as prescribed. Which would give me the WORK I needed to calculate. Then I could adjust the DISTANCE to get to the same WORK as my training mates…


Example:

100lb athlete x 1 mile = 100 mi lb

200lb athlete x 1 mile = 200 mi lb

300lb athlete x 1 mile = 300 mi lb

400lb athlete x 1 mile = 400 mi lb

Etc.


If the goal is 100 mi lb of WORK, you do the math to calculate the distance

100lb athlete = 1 mile

200lb athlete = 1/2 mile

300lb athlete = 1/3 mile

400lb athlete = 1/4 mile

Etc.


It is not perfect, it doesn’t take your abilities into consideration, but is a starting place.

Once you have a starting place, you can determine how much WORK you can do, and then you work on improving that. Not comparing yourself to your mates, but to yourself as you get stronger, increase mobility, etc. πŸ’•

Wednesday, August 4, 2021

Lipedema Fitness: Finding your Flow

 

Flow. Great word, right? 

It has been showing up in my world a lot lately…

As a Lipedema patient Lymph FLOW is a daily thought, how can I make sure I keep my lymph flowing?

It is one of the most important considerations / treatments we do every single day. #movethatlymph 

Lately FLOW has surfaced in my art practice - I’m following daily prompts from the amazing @josielewisart 

The first day was suggested to watch Josie’s #tedtalk - which I did, and learned about the psychological aspects of FLOW, and how it is used in healing.

I’ve always turned to art as a way of emotional healing, so it wasn’t surprising to learn how tapping into creative (or physical) FLOW is therapeutic on many levels.

Have you ever felt so into what you were doing, that the rest of the world faded away? 

For me that happens when making art or writing (even making this graphic, out of artwork I made while in the flow). For others it can happen during a race, playing music, even during work.

The Hungarian-American Psychologist, Mihaly Csikszentmihalyi, recognized and named the psychological concept of flow - describing it as a complete state of total immersion in an activity, one you enjoy so much, that nothing else matters. 

The rest of the world falls away.

I love the idea of getting so into something that it can bring you that level of joy, a flow that elevates you. 

I have been thinking about how we can get to this place of FLOW on a daily basis, as a way to take a break from our worlds when they get overwhelming. 

Things like deep breathing come to mind, meditation, yoga, all things we do as a way to move our lymph, but what if we had a different intension in mind while we did it? 

I get this with reiki during my daily self care. It is an effortless way for me to focus on the FLOW, and take my mind out of the “work” and more into the feel and healing.

Have you felt that flow before? What were you doing, and how can we get into flow on a daily basis?

Sunday, July 25, 2021

Retail Therapy for Lipedema

Happy Self Care Sunday!

Is it a rest day for you? A recovery day?

Do you ease up on all the typical daily self care items Lipedema requires, or do you find Sundays are the only days you can squeeze them all in?

Mine included Retail Therapy today. Which actually started last night (and for the past couple weeks, if I’m honest, not the buying, but the mental shopping), when my world got quiet, and the stress began melting away, I began the actual buying…

Funky new sneakers by @converse an incredibly fun purse by @studiocult.co (yea, it is a binder clip design 🀯with a cool school paper print lining), and artwork by one of my favorite artists @josielewisart 

I LOVE CREATIVE PEOPLE

I use art as therapy, something I found lots of people with chronic illnesses do, it is a way to cope,  heal, and remember that we are more than our condition.

I think retail therapy is similar. Seeking out items that attract you, and bring you joy to see, that can take your mind off stressful situations, or vulnerability you feel.

Buying funky shoes and a purse for fashion sake, is not something I have done in a while, I’m usually looking for items to make living with Lipedema easier. 

But fashion is a big part of me, it is what I went to school for, and Art is a big part of me. 

Not letting go of those parts of me is healing, and what Self Care Sunday means to me today.

Monday, July 5, 2021

6th Annual Lipedema Triathlon Followup


Bravo to all!!!  The annual event took place on June 26 at 9am, and was once again an international event, with participants from the US, UK, Australia, Isle of Man, Isle of Skye, etc.

It was a sprint distance event:
- 750M swim
- 20K bike
- 5K run/walk

I created this event as a way to help spread awareness for Lipedema, and as a reminder of the importance of staying active with the condition.

Thank you all for riding my crazy train! XO  πŸŠ‍♀️ 🚴🏻‍♀️ πŸƒ‍♀️

One of the best things to come out of this annual event is the growing number of participants. All dealing with Lipedema at various stages and abilities. 

Some do just the 5K, it is always the most signed up for leg of the event, over 50 registered to participate this year. Followed by the swim with over 40 signed up, and finally the bike with 38 signed up.

Many participants this year got hooked! The post tri feeling had them feeling super proud and eager for next year’s event, many who spaced out the legs over the month were talking about wanting to work towards doing all three events back to back next year.

But completing all three events back to back is not mandatory, it is an All Or Something event, you do what you can, when you can. Seeing that lead to progressed abilities is icing on the proverbial cake.

We want everyone to be able to join us. We come up with great MODs when needed/wanted, as an example, some use their Cubii for the bike portion, in the comfort of their own home. It is all inclusive ♥️

I was traveling, so no pool access, but had an awesome peloton bike I could use, and I did (2) 30 minute rides back to back; first up was a 30 Min. Lizzo ride with instructor Robin Arzon, and the second was a 30 Min. Hip Hop ride with Alex Toussaint.

I have been using my stationary bike at home with the peloton app this year training for our event, and went from doing the 20K last year (in 5 minute intervals), to this year doing the (2) 30 minute rides! I was excited by that progress. But man, I was not use to the peloton seat, and woof my πŸ‘ was feeling it (a lot). I’ve heard they take a good week to break in, something I have not had to experience with my at home bike. But thankful I was.

Post race selfie…

I’m already planning next year’s event! #lipedematriathlon 

Thank you to @srymca for hosting us locally and to @juzocompression for our participant T-shirts!

#wearestrongertogether #allorsomething 


Wednesday, June 30, 2021

June is Lipedema Awareness: Strength Training

JUNE IS LIPEDEMA AWARENESS MONTH - as someone with late stage Lipolymphedema, strength training has been really key for me. 

It obviously improves our physical strength, our muscles, balance, etc., but by taking action, it can improve our emotional strength, too.

Lipedema can be viscous, and try on the daily to strip away our mobility, so every minute we can invest into stopping that is so important. 

Having self care routines to help our skin, or movements to pump our lymphatics is huge also, but one of the biggest improvements to my quality of life has been strength training. 

It got my core strong, and gave me back my mobility. It is what keeps me moving, even when menopause has brought on more mobility challenges recently.

And it doesn’t have to be all or nothing, even ten minutes is good, or five, or whatever you are capable of. #allorsomething - a little more today than yesterday.

Keep fighting for your strength, and mobility. Seek out whatever helps you get there. There is not just one right way of living with Lipedema.

Sunday, June 27, 2021

June is Lipedema Awareness: Aqua Fitness

JUNE IS LIPEDEMA AWARENESS MONTH - one of the best things you can do is to be as active as possible, and one of the best ways is AQUA FITNESS!

We know aqua fitness provides low impact, resistance type training, it improves mobility, range of motion, and agility, and it helps pump our lymphatics!!! 

The water acts like graduated compression (which many of us with Lipedema must wear) and it is amazing for mental health, too!

It is my happy place!

I wrote a post about the depth of the water in comparison to level of compression, did you know walking in only 3 feet of water is equivalent to 67.22 mmHg (as an example, I wear 30-40 mmHg compression).

The pool is the only place I can be without compression, and get a great workout!

In review of my earlier files in the Lipedema Fitness support group, I came across a file about ALT (Aqua Lymphatic Therapy), and the Dorit Tidhar method, here is a good link: http://www.aqua-lymphatic-therapy.com/about.html to see more, it is a combined aqua fitness with self MLD (manual lymphatic drainage), and what a great combination it is!  

And here is a wonderful video showing more… 

https://www.instagram.com/tv/B9Y4YDtlNjC/?utm_medium=copy_link 

Sunday, June 20, 2021

June is Lipedema Awareness: Column Shaped Legs

JUNE IS LIPEDEMA AWARENESS MONTH - a common term used to describe Lipedema legs is “column-like”.

The shape change of my legs, after the C section of my daughter in 2004, was what sealed it for me, that there was something different, something was going on with my body.

I had always had less shapely legs growing up, but after the surgery my lower legs became more column-like, and the ankle cuff more pronounced.

Sadly it would take me a lot of effort, and 3 years to finally get a diagnosis and understand what was going on with my legs.

It shouldn’t take so long. If I could have been diagnosed at an earlier stage it would have been much better, treatments would have worked better, and I would most likely have avoided the additional Lymphedema diagnosis, and symptoms.

Spreading awareness is key. Patients have lead the way to better understanding, and social media plays a big role in our ability to do so.

Sunday, June 13, 2021

June is Lipedema Awareness: Pear Shaped

JUNE IS LIPEDEMA AWARENESS MONTH - one of the classic signs of Lipedema, is the Pear Shape (smaller on top, larger on the bottom).

After college I was a size 4 on top, and a 12 on bottom. It seemed like no matter what I did fitness-wise or diet-wise, my top half got smaller and my bottom half stayed the same, or got larger.

Not all pear shapes will have Lipedema, but it is an early indicator. Having an upper body that is multiple sizes smaller than your bottom half, is an indicator.

We want early diagnosis for all those with Lipedema. 

Being diagnosed late stage has been super challenging, it is a chronic and progressive disease, an uphill battle, for the rest of my life.

My wish is for better education for the medical field (currently they get about 15 minutes on the lymphatic system), so they know what to look for, so we can get an earlier diagnosis for all those with Lipedema. 

Spreading awareness is key for this! 

We shouldn’t have to become our own best resource on Lipedema, I shouldn’t know more than my doctors do.

Monday, June 7, 2021

June is Lipedema Awareness: Heavy Legs


JUNE IS LIPEDEMA AWARENESS MONTH and I wanted a way to convey what living with Lipedema feels like, sometimes a picture is worth a thousand words.

Most people with Lipedema can look at this picture and immediately know what I’m trying to convey, but those without the experience of walking in our shoes will need the words to go along with the image...

This photo captures the weight of Lipedema, the sloshing you can imagine feeling when trying to walk with heavy, fluid filled legs. June is Lipedema Awareness month, and spreading awareness so others get diagnosed sooner is so important.

It took me so long to get properly diagnosed, not only did I not know until I was already late stage 3 Lipedema, but I also had secondary Lymphedema.

I still cannot find a doctor, in my area, who knows what Lipedema is; and I have been told by a trained therapist that I, “know more than they do, that there really isn’t anything more they could do for me, that I’m not already doing myself.”

This condition is vicious. I stay vigilant with my self care treatments. I stay hopeful. 

I don’t share a lot about how hard it is to live with this chronic, progressive condition, because I try to not focus on the challenges, but this post hopefully gives you some insight, in case you have someone in your family, your friend circle, etc., that you suspect might have Lipedema.

Spread the word! Get those with the condition diagnosed sooner, so they can hopefully stay in earlier stages, and not have their mobility compromised.

Here is a great brochure to print and share...  https://www.lipedema.org/brochure

Wednesday, May 19, 2021

6th Annual Lipedema Triathlon - June 26, 2021

Welcome to the 6th Annual Lipedema Triathlon to raise awareness for the condition Lipedema, and to remind those with Lipedema of the importance of staying as active as possible, to try to slow the progression and limit the loss of their mobility.

The Triathlon is a SPRINT DISTANCE: 750M Swim / 20K Bike / 5K Run (or Walk)

Triathlon races vary in distance, the one we are focusing on is the Sprint: 750-meter (0.47-mile) swim, 20-kilometer (12.4-mile) bike, 5-kilometer (3.1-mile) run/walk. Here is a break down of what we will be doing come June 26:

Swim - The most common pool sizes built today are either 25 meters or 50 meters (Olympic size) so 750 meters will be 30 lengths in the smaller pool and 15 lengths in the Olympic.

Bike - Most bikes (road or stationary) calculate mileage, but if not , just calculate your speed (MPH) by your duration to get you to 12.4 miles.

Run/Walk - Most treadmills calculate mileage; or if using a standard indoor track (200 meters), you would need to do 25 laps for a 5K. If using a standard outdoor track (400 meters), you would need to do 12.5 laps.


This is an #AllOrSomething event, meaning you can do as much as you are able to! You can get a team together to do it as a relay (either each taking a leg, or sharing part of all the legs), or you can do just the swim, just the bike, or just the run/walk (or any combination), or you can take your time and do some each day, you can take upto the full month of June to complete it! 

This is a virtual event, you do it in your own hometown!

Registration: https://www.signupgenius.com/go/9040e49a4ae2ea0f49-6thannual

Huge shout out to Juzo
for sponsoring our participant shirts once again!
(Participants need to register, and email me their shirt size and address by June 4)

June is Lipedema Awareness Month! Let's do this!

Thursday, April 15, 2021

Finding Self Love with Lipedema

Self Love can be a challenging journey for anyone, but living with a chronic illness (like Lipedema) makes that journey extra challenging.

We can see ourselves as less than, when our bodies don’t function like others, don’t look like others, don’t feel like others.

Our self care becomes less about indulgence, and more about necessity, about survival.

Self care for chronic illnesses can make us feel guilty, on top of feeling less than, and we can blame ourselves.

Blame, not just for having the condition, but for any progression of our condition we might endure. 

Did we not move enough, not eat the right things, need more self care, taking too much time away from family, etc.

It is a viscous cycle that chips away at your self worth every day. 

Finding ways to combat those thoughts and feelings are crucial on the journey to self love.

But it can feel overwhelming.


I get asked a lot... So how do you start loving yourself?

1. Start by showing yourself compassion. Be gentle and kind to yourself.

2. Stop blaming yourself.

3. Find gratitude in yourself.

4. Find things you like about yourself.

5. Start a hobby, take an interesting class, see yourself as more than your condition.


You are so much more than someone with Lipedema. It may be something you have, but it does not have to define you.

Starting the journey to self love may not be easy, but YOU ARE WORTH IT!


Sunday, April 11, 2021

Pool Replacement Idea for Lipedema

If you are anything like me, the pool is your happy place.

Even before learning I had Lipedema in 2007, and finding out that being in a pool was one of the best things I could do for my symptoms, actually one of the only physical activities suggested back then, I was (and remain) a mermaid at heart.

Which made the global pandemic even harder, as not being able to get to the pool for over a year, due to closures and fears of exposure to Covid-19, my legs took a big hit. But even more than that, my spirit took a bigger hit. 

Emotional fitness is one of the challenges of Lipedema, and at a time when we all needed extra emotional healing, to not have the pool as a resource, was only adding to the difficulties of living with Lipedema.

The pool has always been more than just a workout, or a fun physical activity to help my legs; it is more of a spiritual thing for me - soothing, healing, uplifting, I can literally feel the weight of my world fall away as I would ease into, and glide across the surface.

I love it so much, when I clorox the kitchen sink I usually drift off to pool memories, the scent alone takes me to my special place (yep, I'm that person who likes the smell of bleach, but almost purely because it reminds me of the pool).

My husband and coach could see the changes to my spirit, and to my legs, as the months went on. He brought up my rebounder (mini trampoline) from the basement, which did help to keep the fluid moving, and I also made sure I had my compression (and sneakers) on every day. Which can be an easy thing to brush off when working from home.

But the spiritual component was still missing.

My husband is not one to give up easily. He kept trying to think of ways to get me into the water, and as a huge gesture of love, for our anniversary last fall, he purchased us an inflatable hot tub for the backyard!

How romantic, right?

By the time all the components arrived, there were only a few weeks to a month at best before our winter would be starting, and past experiences with closing up inflatable pools, made me suggest we put off setting it all up until the spring. 

Reluctantly he would agree, but went forward with getting the surroundings ready, and here is where the fun began...

Our property butts up to several neighbors in our backyard, and finding an oasis, a place to add to the soothing nature that is a hot tub, presented some challenges, especially given our budget was tight.

The first item he put up was a large portable shelter, like the type you can use to keep your outdoor equipment or even your car protected! We went with a smaller 10'X10' model and it was under $200 off Harbor Freight; the hot tub fits perfectly inside, with room for the heater, motor, etc., plus extra space up front by the door for a couple cubicle style storage bins on either side, that are being used for towels, hot tub accessories, etc.

He used the shelter for storing some of our workout equipment, and all his bicycles last winter, and it even had enough space for him to have his bike repair stand inside, where he could tinker all winter long.

But before he added anything to it, our daughter decorated the space and set it up for a Halloween Fright Night sleepover with some of her friends. Big hit!

As the weather was warming up, he cleared the shelter and he and my daughter plotted the perfect location of the hot tub and the two of them ensured the ground was level (a step not to be overlooked, something we learned with our prior inflatable pool days when our daughter was younger).

The hot tub he went with was an Intex 6 person model (the same manufacturer as those inflatable pools we used to get). It is 85"W X 28"H, and at first we discussed what steps/ladder we might require to ensure I could get into/out of the tub, but we found we didn't need anything, I can step over the edge and easily get in and out, with a hand on one of the storage cube stands (or a loving husband's hands). 

Here is my Amazon Affiliate Link for the Hot Tub we purchased. It is under $1,000, which is not entirely cheap, but way better than any other option we could come up with, and they have smaller sizes for even less. As an example, we looked into a swim spa, and found out they can range from about $10,000 - $30,000 (which is quite a bit more, and still less expensive than a typical backyard pool). If you use the affiliate link provided, I may receive a small incentive, which will cost you nothing extra for using.

Now it is not comparing apples to apples, I cannot stand in the hot tub and get my deep water aerobics in tha I love so much, but purely submerging my body and the emotional healing it provides, I find it is a great  alternative. Not to mention being in 2.5 feet of water is equivalent to about 45 mmHg of compression (as an example, my knee high compression is 30-40 mmHg, so it is very similar to that). If you have other ideas for pool substitutes, we would love to hear what worked for you. 

For more info. on the depth of water vs. compression, you can check out the blog post and graphic I created here.

Which brings us to yesterday... we had our usual CrossFit style workout in the park, and upon returning home I immediately checked the thermostat, it was right at 87F (lower than what most hot tubs are usually set at, and even this one can go as high as 104F), but with Lipedema (and even more importantly, Lymphedema), being mindful of heat is necessary.

Heat raises our body temperature, which can cause swelling, the last thing someone with Lipedema and/or Lymphedema wants. It can also be triggering for someone who might be at risk for Lymphedema, as it can bring it on. Like with everything Lipedema, you have to try things out for yourself and then take time to see how your body responds.

I have experience with hotter water causing swelling in my legs, from my earlier days being in a therapy pool, I would have to be mindful and check the thermostat of the pool before getting in, some days it was too hot for it to be good for me. 

Typically public therapy pools can range anywhere from 89F - 96F, and anything over 90F I would not attempt. To give you a better idea of how that compares, a regular swimming pool usually runs from about 78F - 85F. So my safe range seems to be right about 87F-90F. Which is much too cold for a hot tub experience for my family, so we take turns, and adjust the heater accordingly.

Now back to yesterday, the first day for my body to be back in a body of water in over a year... I think my face in this impromptu video says it all...

 

It really boils down to your quality of life, and how you can get to LIVING with Lipedema. It can't always be just about self care and managing your symptoms, you have to make sure you are having fun, too!

Wednesday, March 10, 2021

Using a Percussion Massager on Lipedema Legs

Self care doesn’t just happen on Sundays. I practice self care every morning as part of #livingwithlipedema 

Part of that self care includes using a hand held percussion massager, to help break up fibrotic tissue after I’ve warmed up the tissue (by stretching, lymphatic yoga poses, WBV, and pneumatic compression pumping). You can learn more about my full routine in this prior blog post. https://lipedemafitness.blogspot.com/2020/06/when-i-wake-up-day-in-life-of-lipedema.html

After I’m done with the massager, I do self MLD (manual lymphatic drainage) and apply a good lotion before putting on my graduated compression garments every morning.

Video on how I use the massager can be found on my Lipedema Fitness YouTube Channel: https://youtu.be/E5dAMAzKlrE


Percussion massagers are becoming more and more a go to tool used by Physical Therapists and Sports Therapists, as well as by athletes and others looking to help in their recovery and self treatment options.

We have learned recently that fibrotic tissue is a big concern for those with Lipedema, and breaking it up looks to improve range of motion and mobility.

There are many equipment options out now, and prices have really started to come down; we use a couple styles, and you can read more about the comparison of this Wahl massager (used in the above video) and a gun style massager we bought more recently in this prior post...


I’m going to continue trying to explain more about my self care in the coming weeks, and include more videos, let me know what you would like to see explained better.


Monday, March 1, 2021

March is Lymphedema Awareness


March is Lymphedema Awareness Month...

Many Lipedema patients have secondary Lymphedema, too.

Most self care we do is for the Lymphedema portion of our condition, moving our lymphatics is critical, and thus staying as active as possible is key!

Unlike our circulatory system, which uses the heart to pump it; the lymph system requires our muscles moving to pump it about.

Walking is a great option, so are things like deep water aerobics, aqua jogging, etc. in the pool - the water acts like natural compression.

But if your mobility is challenging, doing things like ankle pumps and rotations can really help, too. It engages your calf muscle and gets your lymph moving.

Special shout-out to my dear friend @kathrynhack for turning me into beautiful art ♥️ Check out her amazing body positive artwork... https://www.klhack.net/

Friday, February 19, 2021

Traveling with Lipedema: Self Care MODs

Traveling with Lipedema can take a toll. I brought my travel vibration plate, my optimal plus pump, and my Wahl hand held massager like I always do. 


But sometimes your new surroundings can make self care extra challenging. 


The bed is too high to use my pump like I normally do, so I tried the couch, and my left leg kept sliding off yesterday - I found when I was done I had been using a lot of muscle to keep it in place and my groin was sore. Today I added a little ottoman to give it support and it seems to work much better.


We adjust, we modify, we get creative (you should see me catapult myself into the bed - it is waste high, even when using my vibration plate as a step stool) 🀣 



#nevergiveupneversurrender #justkeepswimming 

Thursday, February 4, 2021

LIPEDEMA FITNESS: THROW THE DICE FITNESS CHALLENGE


When you wake up at 4am and have a fun fitness idea, while trying to go back to sleep (or maybe I’m just missing the Casino 🎰)...

THROW THE DICE THURSDAY!

The idea is for a HIIT Tabata style workout, to come up with movements, Ex...

1. Pushups
2. Situps
3. Squats
4. Pull-ups
5. Battle Ropes
6. Burpees
7. Box Jumps
8. Turkish Getups

Then roll a dice to determine which movement you do for each of the 8 rounds.

What will your workout look like today? Don’t have any dice, use playing cards (use Ace-6), or write down the movements on small slips of paper and pull them from a hat. Just have fun!

Tabata equals eight rounds of 20 seconds of work followed by 10 seconds of rest. Each Tabata set equals four minutes. You can find free Tabata timer apps online!

Happy Thursday

Friday, January 29, 2021

Lipedema Fitness Product Review & Giveaway w/ Juzo

We will be doing a monthly PRODUCT REVIEW & GIVEAWAY on Instagram - starting this Sunday, January 31st, as part of a #selfcaresunday highlight on compression, featuring @juzocompression 

HOW IT WILL WORK:

Each month Juzo will send me an item to review here on Instagram, and we will pull a random name from all the comments on the review post. You must be a follower of @lipedemafitness  and @juzocompression to win. Then I will tag the winner in the original review post, and contact you via PM, asking for your name, mailing address, and size. I will give that info to Juzo, who will mail your item directly to you.



RESTRICTIONS/FINE PRINT:

All items will be off the shelf (OTS), meaning no custom sized garments. The winner is responsible for taking their own measurements, and determining what size they need. Juzo has coordinating size charts on their website (www.juzousa.com). Winners are limited to 1 win per year, and shipping is limited within the USA.



Tuesday, January 19, 2021

Juggling Lipedema Self Care

One of the things you learn early on when you are diagnosed with Lipedema is that it is considered a Self Care condition.

It is because the treatments are left up to the patient to arrange, to learn what works (and what doesn't), to fight for coverage (with insurance), to pay for out of pocket when not covered, to continually try new things, and to stay on top of the progression of our symptoms, as best we can.

I still remember being at the CLT (Certified Lymphedema Therapist) office after my MLD (manual lymphatic drainage) treatments were finishing up, and asking what was next, and learning nothing!

CDT (complete decongestive therapy), which included MLD, bandaging, etc., which I had been having done in therapy, had been successful, and after I reached a plateau (no more reduction to my measurements) I was fitted for graduated compression, and basically left on my own, as there were no treatments for Lipedema. Come to find out, even the CDT protocol was a Lymphedema treatment, it was prescribed because I had secondary Lymphedema to my primary Lipedema, so it was beneficial for me to have the CDT treatments.

Since then I have experimented over the years, and found many things that help my symptoms; some help ease the pain, some help to keep my lymphatic fluid moving, etc.

The first thing I found helpful was moving as much as possible, it is what started the journey that would become Lipedema Fitness, and if you have read any of my other posts, or followed me on Instagram or are a member of the Facebook support group, you probably know one of my motto's with regards to fitness is ALL OR SOMETHING!

Which is a way to remind ourselves that every movement matters, every step we take, every effort we take, matters, and helps us to stay strong and mobile. We cannot have an All or Nothing attitude, we need to modify that to All or Something.

Well the same motto holds true for Self Care, too.

Fitness is considered part of Lipedema Self Care treatments, but I cover fitness a lot, so this post is referring to things we can do outside of fitness; Self Care items we have discovered over the years that also help our symptoms. 

Some examples include Compression, Cupping, Deep Breathing, Dry Brushing, Massaging, Moisturizing, Pumping, Reiki, Taping, and Vibration. There are also others, but you get the idea.

Self Care can be incredibly TIME CONSUMING, and can be COSTLY. We spend hours (yes hours) every day trying to stay on top of our care, and sometimes it becomes overwhelming.

I've written a post that talks about my typical day here. It will give you an idea of the time commitment for the treatments I do on a regular basis.

So, how do you know what will work for you? Sadly, you don't until you personally try it. Being in a support group and hearing from others what is working for them can give you some valuable insight, but ultimately you will have to try things out, and see how your body responds.

Once you have some Self Care treatments that you find helpful, you then have to see if you can afford them on a regular basis; not just can you afford them financially, but can you also afford the time it takes to do them, and do you have the ability to physically do them, or have help to do them at home?

I have tried so many things over the years, invested a lot of time, and money, seeing how they work for my own symptoms, but I also try them so I can share with my members/followers, so the information is out there for others to find. Sharing is really helpful, so if you try something please consider sharing your experiences in a group you belong to, or as a comment on someone you follow, etc.

I consider myself experienced in Self Care, although there are so many things out there, something new is always coming up (which is a good thing), but I want to share something with you that is important in being able to Juggle your Self Care...

YOU ARE THE BEST JUDGE OF WHAT WORKS FOR YOU!

I think we need to hear that, a Self Care option might be the bees knees to someone else, it might even be very beneficial to you, but if it doesn't fit into your lifestyle, it is OK to not do it.

It might be out of your budget. It might be physically challenging to do it. It might be too time consuming. It has to work within your lifestyle to become something you can do on a regular basis, there is no reason to feel guilty if it doesn't work for you, for whatever reason.

Over the years I have played around with what I use/do regularly, I look at my ROI (return on investment), do I get enough out of the Self Care treatment, compared to what I put into it?

I find cost is an easy one to let go of, we know if something is out of our budget and we can let it go, or we can try hard to get insurance to possibly cover it, but it becomes a pretty cut and dry decision. 

Time on the other hand is harder to me, how do I justify not doing something that might help me? We tend to feel guilty if we are not doing absolutely any and everything to combat Lipedema, and I'm here to say you have to be able to let that go. Emotionally we don't have time for the guilt, we are doing the best we can.

One thing we can do is MODIFY the Self Care item... 

Just like in fitness we know MODs are our friends, they let us do things physically we might not be able to do otherwise, and MODs can work equally well with regards to our Self Care items, too. We just need to learn how to apply them.

For example, I was prescribed 30-40 grade graduated compression (that is the strength of the compression), and it was for a full foot legging style. I was fitted and my PT ordered me custom compression (because I did not fit into off the shelf full leg compression). It was really expensive, like almost $1000; and guess what? I hated it. Not just because it was uncomfortable, but because it felt like it was constantly pulling me down, and it messed with my emotions. 

We tried everything, even asked the company to modify the garment and turn them into a short and thigh highs. The company made the customizations, free of charge, it is part of what you pay for. But the new garments didn't work either, they just rolled, and slid, and didn't stay put. 

It was a long effort to try to make them work, lots of blood, sweat and tears went in to trying to make them work, but they just didn't. So I decided since my most severe swelling was in my lower legs, I would start with knee highs, and I have worn knee highs ever since. Wearing them have helped me to keep my progression at bay, if I would have kept the full leg style I can tell you I would not have worn them, and my progression would have begun immediately.

At first, I beat myself up over that decision, but over the years I have learned to let go of things that I cannot get to work in my lifestyle. I am doing what I can do, and that is enough. I don't do myself any good feeling guilty that I am not able to do more.

When I began training I was concerned that my upper legs would be painful, so I found (from trial and error) that I could easily wear a micro massaging full legging (under my knee highs), and give my upper legs some support, too. I could even squat in these leggings, where I could barely walk in the custom piece I tried initially. Finding that helped me to realize lighter compression and being able to squat did way more for me than wearing higher level compression and not moving much.

I modified my compression. I made it work for my lifestyle. I learned modifying what I was doing was more important than being miserable in the prescribed compression. And isn't that what MODs are all about, finding ways to make it work?

I consider that a MOD to the treatment itself.

Another example of modifying a treatment would be using a hand-held percussion massager. I started using them to try to break up fibrotic tissue, but some of them can be too powerful, too painful on Lipedema tissue, so I experimented with different massagers, and also how I use them. 

You can adjust the power, and change the attachment, but I also found if I adjust the angle I'm hitting the tissue at, I can tolerate the treatment better; again I Modified the treatment itself. Now I am able to add this into my regular Self Care routine, because I found a massager and a method at using it that is not too painful, and I am able to see some real results in how my legs feel.

Another way we can make a Self Care treatment work for us is to Modify the time it takes; maybe something takes too long to fit into your busy schedule, well, why not shorten the duration to something you can easily manage? 

Don't beat yourself up that you can only spend five minutes (instead of 30) on a treatment. If it works and helps, and you can easily add it to your day, you will use it regularly and see results, vs. not doing it at all because it takes too long, and you are already maxed out and stretched too thin.

An example of that would be Dry Brushing, you can really take your time and spend 15-20 minutes brushing your entire body, then hoping in the shower (which is how they suggest we do the treatment), or you can adjust that; maybe you only have 5 minutes to spare, then do 5 minutes. Maybe rotate the areas you focus on, switching up each time. However it works for you is the best way to do it.

Another time saver I just confirmed is another Modification option, which is HUGE in my book; it involves my pump; I am currently working with Medical Solutions Supplier and trying out the Optimal Plus; like other pumps the set treatment takes 60 minutes. 

Before trying this machine, I had another pump that also had a 60 minute set time, but it only did one leg at a time, so 60 minutes for the left leg, and 60 minutes for the right leg (plus the time to get in and out of the pump). It was so overwhelming, and so time consuming, that I rarely found time to use it. It was a great treatment, one that comes highly recommended, but it just was too much for me to use on a regular basis.

The Optimal Plus I am using does both legs at once (already cutting the time requirement in half); but still I don't have an hour every day (the suggested treatment is 2-3 treatments a day for those that are less mobile, and at least once per day for those who are more mobile).

During a session last week it struck me, I wondered if I could adjust the duration, like I can adjust the compression strength? I reached out to my contact and asked, and guess what, you can! 

They still suggest the full hour per day, but said it could be done 30 minutes in the morning and 30 minutes at night. Which might make the treatment something I could do more frequently, or even add an extra half session, where time permits.

So to sum up this rather long post, you can modify your self care treatments to make them work for you and your lifestyle. You should not feel guilty about doing so, either. You should feel empowered, you are learning so much about your condition, and your body, further proving you are your own best resource, so trust you!