Living w/ Stage 3 Lipedema 2021 Lives

In 2021 Crystal from @cfitrevolution and I (Pattie) from @LipedemaFitness began talking about our Lipedema journeys, our self care routines, and some of the fears that come up while living (and aging) with late stage Lipedema, and decided if we were discussing these topics privately, others might also be interested, and have some of their own experiences to share.

In April we began with a live to share our personal stories, and where we were at, and what things we would be discussing, you can click here for the APRIL 2021 replay.

The following are the links to each month’s live, we are incredible grateful for the amazing guests we have had, and their generosity in ring their time, experience and education with us.

MAY 2021: Special Guest was Cara from @palegingerpear, who shared her surgery journey with us.

Cara has been sharing her surgery journey publicly on her Pale Ginger Pear Instagram page, and was so open to come on and share what that has been like with all of us.

Thank you Cara! 

Always so open and candid about what it has been like for her living with late stage Lipedema, and how surgery has changed her life.

JUNE 2021: Special Guest was Sarah from @born2lbfat, and for those that do not already know the amazing Sarah, she is a Lipedema, Lymphedema & WLS patient, and Healthcare & Insurance Advocate. The picture used in promotion of the live, shows her in DC where she was lobbying for the #lymphedematreatmentact 

Thank you Sarah! For sharing such great info. about Lipedema, Lymphedema and inclusivity with obesity, and helping make real change with all the work you do.

You, too, can get more involved - spreading awareness is so needed. If you don’t feel able to personally write, create awareness, share what others have created and educated you. You never know who you might help.

JULY 2021: Special Guest was Deb from @movewithdeb 

Deb is not only someone living with Lipedema, she is a Vodder trained Lymphatic Therapist, a CMT, and a Pain Recovery Coach who uses her training and vast experience to help people move more, and feel better, in their own bodies.

For quite some time now I have been a fan of her inspiring posts, which are always filled with such profound insight and caring towards healing, and helping us to heal ourselves. Thank you Deb!

AUGUST 2021: Special Guest was Crystal’s personal Physical Therapist, Kathy from @mcginty275.

Kathy is a Physical Therapist Assistant at John Hopkins Hospital in their Outpatient Rehabilitation Center. She strives to alleviate her patients suffering in the office, and provide useful resources for at home self care! 

She is certified as a Lymphedema, Lipedema, and Oncology Therapist and specializes in MyoFascial disorders and chronic pain. Thank you Kathy!

SEPTEMBER 2021: Special Guests were our coaches! Coach Mike Brooks from @leadfitness & Coach Bob Cornute from Sweatbox Fitness.

We had a zoom call prior to the go live, to let our coaches get to know each other, and it was no big surprise that they both shared similar beliefs on the importance of functional fitness, improving mobility and strength training.

It was a great (and fun) episode, thank you Coach Mike & Coach Bob!

OCTOBER 2021: Special Guest was Dr. Melissa Gallagher from @naturalhealthresources 

Dr. Gallagher taught us all about peri-menopausal & menopausal effects on Lipedema, what it means to be estrogen dominate, and some OTC suggestions to treat hot flashes, night sweats, irritability, etc.

Dr. Gallagher is so knowledgeable and caring towards her clients. She has a masters in Holistic Nutrition and a Doctorate of Naturopathy; Vodder trained certified Lymphedema therapist, and a Juzo Academy Educator. Thank you Dr. Gallagher!

NOVEMBER 2021: Special Guest was none other than Dr. Karen Herbst from @drkarenherbst 

Dr. Herbst is one of the most knowledgeable people on the conditions we live with, and she has been in our corner since before WE ourselves ever heard of Lipedema. We were incredibly grateful for this opportunity, and so thrilled to be able to share it with you live.

Incredible information about the changes to our bodies as our Lipedema advances (lobules, fibrosis, gait and mobility issues, etc.) was shared, a must rewatch episode! Thank you Dr. Herbst!

DECEMBER 2021: Special Guest Linda Anne Kahn from @lindaannekahn started our discussion into EMOTIONAL SIDE OF LIPEDEMA part of the series (which will continue into 2022). A very real, very un-talked about part of living with a chronic illness, like Lipedema.

Linda-Anne discussed self care for emotional healing, using techniques such as aromatherapy, breath work, mindfulness, and more!

Thank you Linda-Anne! You are always filled with so much light and love for our community.

Chrystal and I look forward to bringing you more topics in 2022! If you have any suggestions, let us know. Thank you to all those who tune in live, your questions add to how special these discussions are.

Reset, Restart, or Let it Ride

We have a saying in our house, “restart, don’t reset”. 

It is based on the less than ideal cable service we have, restarting the network is a regular occurrence.

But what’s the difference? 

Restarting is turning it off, and back on again, but resetting is erasing.

It got me thinking about that analogy in regards to self care treatments for my Lipedema.

Do you need to take a break from something you are trying for your Lipedema treatment? 

Then do it, power down that effort, and when you are ready turn it back on again.

Or do you need to reset what you are doing altogether? 

Do you need to let go of something, to let in something new?

Or maybe you have a routine that is working perfectly, and you need to let it ride?

It can be overwhelming, so looking at where you are in this very moment (it can change from day to day), is how we get the clues we need to know how to begin.

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

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

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!

🚴🏻‍♀️

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.

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!