Lipedema & Hair Loss

Next Wednesday (12/20) is the December Lipedema Patient Roundtable, hosted by @lympha_press and we always have amazing conversations and ask you for any questions you may have.

Today I received a really great question about lipedema and hair loss, and if there is any connection.

Over the years many of us in the #lipedemacommunity have shared a reduced need to shave our legs, due to less hair, but this question was in regard to the hair on our heads.

We now know lipedema can be found anywhere in our bodies, including in our heads, and we have begun to see the term #glymphaticsystem popping up more and more lately (lymphatics in the central nervous system) - so it would seem that yes, there is a possible connection.

Do you have lipedema in your head, and if so, have you noticed any hair loss? We would love to have you tune in next week, and share your experience with us in the chat.

Registration is required to participate/watch live. If you can’t join us live, we would love your input in the comments, and I will share it live.

I did some initial research and found a condition called #lipedematous scalp - a rare disorder characterized by increased thickness of subcutaneous tissue of the scalp, which can cause hair loss. The terminology is quite similar and has me asking so many other questions. 

Hope you can tune in. Thank you!

#lipedemapatientroundtable #lipedemafitness #lipedemahairloss #hairloss #lipoedema #lipolymohedema #lymphedema 

WHAT’S ALL THE BUZZZ W/ ZEPBOUND: and can it help Lipedema?

Zepbound is all the buzz, because the FDA just approved it to be used for obesity. 

The name is new but the medication is the same as #mounjaro - which was approved in 2022 for the treatment of type 2 diabetes. 

This may sound familiar, back in 2017 the FDA approved #ozempic for type 2 diabetes, and then created #wegovy which was FDA approved in 2021 for obesity.

But why are we talking about these weight loss drugs on a #lipedema page, when we have been told (and many have tried everything under the sun) and found weight loss medications do not typically work for lipedema. 

Because many lipedema patients who are taking these meds are finding they get pain reduction and shrinking of their fibrotic areas. 

Like everything else we have found, it doesn’t seem to work the same for everyone. But this step opens up options and competition - these medications are rarely covered by insurance for obesity diagnoses, and the out of pocket cost is over $1000 per month. Competition is a good thing.

I have not taken these meds personally, so I have no personal insight but I am very curious on the #antiinflammatory and #antifibrotic properties you may be experiencing. I will be addressing with my doctor at my next annual physical.

I also hope it inspires research on these medications and their effects on lipedema bodies.

DIY Halloween Costume: Rhythm Nation

I love Halloween, always have, always will.

I remember the cheap plastic costumes we had as kids, not just the mask was plastic, but the costume itself was also plastic, I still remember sweating buckets walking around trick or treating.

And when we had no money for those costumes, we (or our parents) made them, a.k.a. DIY (do it yourself).

Pillowcase or old sheet ghost, fortune teller with mom’s scarves and hoop earrings, or a cat face drawn on with black eyeliner, after I blew a whopper of a bubble gum bubble through said cheap plastic cat mask mouth opening one year, making the mask totally unusable.

That love of DIYing a great costume has never left me, which is why I am so grateful for the monthly LIPEDEMA PATIENT ROUNDTABLES, where we log onto zoom in costume every October.

This year’s costume was inspired after a Peloton Artist Series ride featuring none other than THE Janet Jackson (highly recommend this ride from 9/28/23 with trainer Emma Lovewell).

Growing up I wanted so bad to be one of Janet’s RHYTHM NATION backup dancers, practicing alongside the video whenever it came on MTV. Well this year, that dream (somewhat) came true.

Here is how it was done for around $80, and several hours (and it could be made for a lot less, depending on what you find in your closet and/or around the house)…

• Baseball hat embroidered with the 1814 emblem - from Rockatee here for $24.99.
• Black mock neck tunic - I lucked out and found one on clearance at Torrid for $15.94.
• Black leather dog leash from Amazon for $9.90 - old handbag straps or ribbon would work.
• Stainless steel chain from Amazon for $3.99 - I should have looked in my jewelry box.
• Metal buckles for $8.99 - could have repurposed but was happy to find a pack of 5 under $10.
• Leather gloves for $11.99 - I need new gloves this winter, so went with ones I would wear after.
• Small sheet of metal for $6.47 - swapped out for cardboard.
• Hoop earring and old silver work key I already owned - no cost.
• Art supplies I already owned - no cost.

Notes: 

The metal I tried cutting into the 1814 emblem did not work. It was really hard to cut with my husband’s tin shears, and the cut edges were way too sharp. This is when I repurposed the cardboard from a small box that had come in the mail. Not only did I use it to create the 1814 emblem on my chest, but also the “riveted” pieces on my gloves (the rivets were painted hot glue dots in each corner).

Instead of sewing the buckles on the tunic, to more resemble Janet’s jacket, I added them to the right side chest embellishments - on zoom you wouldn’t have seen them if I sewed them on the sides of the tunic, so I modified the look, and really like how it came out. The piece was heavy with the metal buckles, so I attached the leather straps to the shoulder seam of the tunic, and in the back. I did the same for the 1814 chest emblem, as instead of cutting the silver chain, I left it intact and just taped it to the back, which added weight to that side as well. The stitching in both places held up during the zoom call. But if I wear this out on Halloween, I’ll tack it down even more.

These buckles and 1814 embellishments could also be added to any black top, jacket, dress, etc. that you already own, to save some money. I really liked the tunic and planned to remove the embellishments and then wear it after, so I was fine with buying it, and it was on clearance. The leather straps might be harder to source around the house, I was initially going to see if I had a broken handbag I could repurpose the straps from, but I think even black ribbon or marker could be used.

The baseball cap I really love and plan on wearing that outside of the costume, too. But you could make a second 1814 embellishment and attach to any black baseball cap you own to save even more money.

Initially I was trying to find the iconic key earring, and they do still make them, but they were $50+, so I just used a small silver key on one of my silver hoop earrings and it worked great. I thought if the key opening doesn’t fit the hoop, I could just wire wrap it, but the opening worked on the earring no problem.

It would be fun to try making this costume with only supplies on hand, like we did as a kid.

Right Now is the Best Time to Start

Let’s talk about starting, or restarting, a self care and/or movement routine.

I came across this photo of a keychain I had made at the beginning of my #lipedema journey. 

It was a reminder, that while initially I listened to nothing I could do, and as a result I progressed a great deal, losing nearly all my mobility, that today was a new day. 

Any day, any moment, can be a new start. It doesn’t have to be this big commitment. Just doing one thing is a good start.

Maybe you have not been able to keep up on your self care and/or movement routine like you would like to, and you don’t know where to begin? 

Maybe you ask yourself, “why bother”? 

Because you are worth it. Caring for our bodies is worth it, and while not a cure, it helps slow progression and makes living with lipedema a lot easier.

Starting over is not a failure. 

Starting over doesn’t mean you go all the way back to where you began, because the good news is, you always start from experience.

You know what helped, and what did not. You know what worked for your routine and what was a challenge for you.

Start with something simple, something that you enjoy, something you can tack onto your daily routine.

#habitstacking is how I do it. I add self care and movement to something I already do.

Like when I make the bed in the morning, I add in some stretching to loosen up my body. 

When I check in on the support group in the morning and write the daily post, I do so from my vibration platform.

When I have a print job at work, I add some squats while I wait, or when I go into the kitchen, I do some kitchen sink push-ups while my coffee brews.

By adding in my self care and movement this way it doesn’t feel as time consuming.

I also like to schedule a #peloton ride when I’m not as active as I want to be, by scheduling it I set time aside for me, like I would another apt. 

It is what works for me, what works for you? How can we help you start or restart your self care routine? And what ideas do you have for when we get stuck?

No negative feelings attached. Life in general is challenging, living with a #chronicillness that requires a lot of self care makes it even more challenging.

Menopause Monkey Wrench on my Lipedema Journey

Warning ⚠️ we interrupt this usually positive blog for some #realtalk 

Some days #menopause feels like a big #monkeywrench in my #lipedema journey.

Transitioning through menopause made my lipedema symptoms spike! My mobility took a hit (that thing I worked so hard the past ten years to regain)! 

Not to mention the typical menopause changes we can go through. Ok, so I mentioned them. #iykyk 

But purely lipedema based rant - the #selfcare things that were working well for me, allowing me to be active, and do all the things I wanted to, when I wanted to do them, are no longer working the same way. 

I’m sure they are still helping, and yes, I’m still doing them all, and then some, they are just not helping at the same level.

Which is super frustrating. It takes a long time for each person with lipedema to figure out what works (so much we try doesn’t, even when it does for others) - so when you have a nice set schedule of self care that helps you feel somewhat normal, and then poof, it no longer works the same, and it is time to retry everything all over again and see what sticks - it is not only frustrating but exhausting on top of those regular changes women go through - it can leave you with zero spoons! #spoontheory 

It has me questioning surgery big time, the only thing currently that can remove the diseased tissue, but now I’m post menopausal, so I question the recovery at my age, the cost as I near retirement, and at late stage and higher BMI is it even an option? I never wanted surgery, so it is down right scary to even contemplate it. 

Don’t get me wrong, I’m still the Queen of MODs and positivity BUT some days it is utter BS what we deal with. 

And my heart goes out to all in our community dealing with even more debilitating conditions on top of lipedema, on top of menopause. Which makes me feel horrible for even sharing my frustration. 

Movement is still key for me, had to switch up what I do, and really listen to my body clues, but movement in general is key.

#mindfulmovement is the name of the game. Giving my body love for all she does for me 💜 will lead my self care now and always. Rant over.

Badass & Healing Event

Last Monday we took the first of four Peloton Reflection rides with instructor, Christine D’Ercole. 

It was the “I Am” ride of the #iamicaniwillido process of recognizing and changing our self talk.

When you say “I am”, what words follow? 

A lot of times they are not easy to say out loud. Our self talk can be pretty brutal.

One thing Christine said during the ride was once we are able to say them, we may need to edit them.

Especially if your phrase starts with I am not… (strong enough, tall enough, smart enough, small enough, etc.)

We need to take the “not” out… I am strong enough, or just “I am strong”. I am smart enough, or just “I am smart”. 

The taking the “nots” out turned into a visual for me, as in untying the knots of the things that tie us up and hold us back. Seeing myself visually untying the knots that are holding me back, and as I untied each heavy criticism, I was lifted up a little more, they were no longer weighing me down, and I could begin to soar to new heights. 

That is the power of journaling. Really spending time with your words, your thoughts, validating those that come to the surface (those we may not even realize we are thinking/saying), and working through them let’s us know where we are at in this moment. And knowing that, helps us move to where we want to be.

April Sluder from The Lipedema Journey is amazing with writing prompts and agreed to collaborate with us on this event, to help us work through those emotions. 

But let’s not forget the physical side. The ride itself gets us to drop our baggage, to let go of all the life things on our shoulders, that make us need to stuff down the very personal emotional journey we are on. It is a body/mind journey - some days more body, some days more mind. 

The connection to the #fascia and those knots/adhesions are also not lost on me, how we work through the fibrotic tissue to open the flow! 

Do you see why I have needed some extra time to write and process. That is what #badassandhealing means we can be #badass and still be #healing at the same time.

The “I Can” ride will be on 10/2/23 at 6:30pm EDT, if you want to join us. You can find us at #lipedemafitness on the Peloton leaderboard. And you have time to go take the “I Am” ride if you missed it on Monday.

If you do not know, you don’t need a peloton bike to participate, you can get the peloton app and use your own stationary bike, that is what I do. I’m a huge fan of all the classes peloton offers in their app, not just cycling, but treadmill, strength, yoga, meditation, etc. so many classes, so little time LOL.

Also, Christine D’Ercole has an amazing website www.iamicaniwillido.com and does a lot of self talk healing work called wordshops. Highly recommend checking them out.

The Lipedema Link Podcast & Other Resources

I recently had the pleasure of joining Don-Ellen Ray and her producer, Phil, on their wonderful new podcast, The Lipedema Link. 

Like me, Don-Ellen also has Lipedema and we talked for over an hour about this chronic and progressive condition, and ways we can slow the progression, feel stronger in our bodies, and the importance of finding others like us to make the journey a little easier.

Click here to watch!

I want to thank Don-Ellen and Phil. The stories they bring are reaching people who need to know about Lipedema, so they can be diagnosed sooner, and begin treatments in an earlier stage to hopefully prevent them progressing to later stages like I was when I was diagnosed, back in 2007 at a stage 3 Lipolymphedema.

If you think you may have Lipedema and want to join the Lipedema Fitness support group, and join a community of others who understand what you are dealing with on a daily basis, and provide the most caring support I've seen on social media, we would love to have you.

The Lipedema Link podcast already has several stories you can watch, and the level of care this dynamic duo extends to the community is simply wonderful. Maybe you have a story you would like to share, I highly recommend reaching out to them.

LEARNING MORE ABOUT LIPEDEMA

This condition can be overwhelming, just getting diagnosed can be a challenge. I recommend the Lipedema Foundation, which is such a great resource, and they have a one page brochure you can print, or even ask for printed copies, and share with your doctors, family, and friends. I like to leave them on bulletin boards in the gym, favorite cafes, any place someone with this condition (or someone who knows them) might find it. The Standard of Care for Lipedema in the US is also an amazing resource to learn even more.

The Lipedema Foundation is a not-for-profit organization that provides grants for research into all things Lipedema! I had the absolute pleasure of meeting their founder, Felicitie Daftuar at the 2014 FDRS Conference. This group is responsible for over 12 million in grant donations to try to find some real answers into what we are dealing with.

The research presentations at the annual FDRS conference is a highlight for me, they give me hope and let me know we have some major medical professionals in our corner.

So please know you are not alone. And if you are able, I highly recommend coming to the next FDRS Conference, being held in St. Louis! I cannot explain the feeling when you walk into a room filled with hundreds of others just like you.

The Amplifier of Pain is FEAR

September is Pain Awareness Month and I’ve been diving down the rabbit hole of seeking ways of reducing pain naturally.

Diving so far down, I’m popping back up in the 80s with this boombox reference. And you know I’m so not mad at that.

I heard this statement last night on a TEDtalk with Doctor Amy Baxter - she was talking about “how to hack your brain when you are in pain”.

How fear can amplify our pain, and having control can reduce it. She said, “having control over your options decreases pain”

Man that struck a chord with me. 

It is the same idea that strength training gave me emotionally. That I could have say in what my body was experiencing.

I cannot change that my body has #lipedema but I do have some options in how I respond to it.

I’m not trying to belittle the pain, I fully know living with lipedema is an all day every day challenge.

But I also know that I can do things to lower the level of pain. I have options.

And just the opposite, if I get stuck in the pain cave, if I let that fear of what I’d take hold - it can be a quick spiral into deeper more prolonged pain. 

Which takes me out of doing the things I know help my symptoms and reduce my pain.

Such a viscous cycle.

But guess what? Our standard lipedema self care methods that are all things we do to reduce the symptoms of our condition, well every one of them also reduces pain. 

We have some options. We have some control. 

To go a little deeper, we need to recognize that what we are doing is caring for your body, being in the right headspace to be positive while we are doing the treatments, is key.

And furthermore doing things that bring us joy, that we don’t think even have any impact on our bodies, like looking for those #glimmers we talked about recently, can really turn down the volume on our pain. 

And surprise, seeking joy helps our symptoms and our pain way more than you could even imagine. It all counts.

By turning down the focus on the pain we can redirect our attention to the joy, and it builds when we do.

Whatever we focus on grows, so let’s turn up the joy and turn down the pain.

#lipedemafitness #lipoedema #lipolymphedema #healing #emotionalfitness #pain #80skid 

Vibration for Lymphatics & Fascia

Two of the main focuses of those living with #lipedema since day 1 are treating our #lymphaticsystem (inflammation) and our #fascia (fibrotic tissue).

When we find treatments that work on both at the same time, it is a win win!

I started with a #vibrationplate for my lymphatics back in 2014 and still use it every morning. 

Then I added the handheld massager to help break up fibrotic areas. I also would use it on my feet for reflexology spots, mainly because it felt so good, but also it seemed to help the lymph flow easier, too.

We learned those fibrotic areas are adhesions in our fascia.

Gentle vibration works best for me, as it doesn’t cause pain to use, so my body relaxes during treatment, and that is just what we want for healing.

When we learn more about our bodies in general, we can help with the symptoms. 

We should stay curious as to what is going on, and not just treat symptoms, but look at the route causes.

I want to fix what is going on in my body, not put a bandaid on it. 

We obviously need pain relief and limiting our edema, etc, but while we ease those symptoms with self care, movement, compression, etc., I will keep looking for what is going on below the surface.

#lipedema #lipoedema #lipolymphedema #lipedemafitness #staycurious #lipedemalife 

Shameflammation

I was I today years old when I first heard this term - thank you @stopchasingpain 

We all know when living with #lipedema and/or #lymphedema we deal with #swelling and #inflammation - in fact inflammation and fibrotic tissue are the two key things we are all working on to help mitigate our pain and progression.

As we learn more about our bodies and our #fascia we learn just how connected our bodies and brains are. Those gut feelings, and gut reactions have new meaning. 

#shameflammation is #shame + #inflammation and basically means each one feeds the other in our bodies. 

We can feel so much shame and guilt for how we look, what we require for self care, what we need from our loved ones, how we feel when self care doesn’t seem to work, etc., and we can direct that negativity at ourselves. 

Sometimes with thoughts. But a lot of times with spoken out loud words, too. Whether in an attempt to make a joke at our own expense, or downright vile nasty comments about parts of us, or as a whole. 

It is heartbreaking to read on social media when others do it, and also when we see we actually do it to ourselves, too.

But words matter, thoughts matter. We need to remember that not only is it a vicious cycle of negativity causing emotional trauma, but it is also causing physical trauma. 

And all that trauma stays in your tissue, until you work through it and release it.

It doesn’t matter how much self care you do, if you use your own words against you. Think about how much better your efforts will be if you change up your inner dialogue 💜

You are beautiful. You are worth it. You are doing an awesome job living with a brutal condition.

#lipedemafitness #lipedema #lipoedema #lipolymphedema #wordsmatter 

Lipedema Fitness: Elevate Your Legs

Yoga straps (or belts) are a stretching aid; a great prop for helping you with challenging yoga poses. 

It becomes an extension of your arm, allowing you to do poses you may not be able to without the additional length.

Especially helpful with larger #lipedema limbs that might be challenging to get into the proper alignment of the pose, to allow us to hold the pose longer, which is the goal, and it supports the joints and the weight of our limbs.

We talk a lot about elevating our legs overhead to improve #lymphaticdrainage - A strap like this can be very helpful to do so. 

Maybe your back doesn’t allow you to elevate both your legs overhead, doing one at a time is a great MOD, I like to bend the leg that stays on the ground (doing in bed is also an option) and if one leg is still too challenging, a strap may make all the difference.

You support your body as you get into the elevation, you are able to hold the elevation longer when supported, and the most important aspect is to not be in pain while doing so. Relaxing and breathing into the stretch is when the magic happens. The strap helps this big time.

The straps are easy to use for one leg with the D ring closure cinching up the loop around your foot, and it is also long enough that we can use them as demonstrated in the video for both legs. 

I have one on my nightstand and one in my gym bag. They are inexpensive and a great tool in your #selfcare toolbox 🧰 

#lipoedema #lymphedema #lipolymphedema #lipedemafitness #yogastrap #yogaprop #lipedemalegs #lipedemastrong 

Aqua Fitness for Lipedema & Lymphedema

Let’s talk #aquafitness for #lipedema and #lymphedema 

I get asked what is the best exercise we can do, and one of my top answers (if you have access to a pool) is Aqua Fitness.

WHY? 

Muscle Movement

+ Water Resistance

= Lymphatic Stimulation 

It is a win win! The resistance of the water helps work our muscles, and the movement and graduated compression of the water helps our lymphatics.

In 2020 I wrote a blog post about how to calculate water pressure to figure out the level of compression I was getting in the pool, since so many of us need to wear compression I was curious and could not find any answers online. 

These calculations give us an idea of how much compression our body feels at various depth in the pool, but it is not a replacement for wearing compression.

When you get out of the pool it is necessary to get back into your compression. 

And a heads up, as you climb out of the pool you may notice your legs feel extra heavy, don’t worry, that is normal. Our bodies have to readjust to dealing with full gravity again, and this makes already heavy legs feel even heavier.

I took the typical questions I get asked and turned them into this graphic. 

But one thing I like to add is the pool can be very beneficial to our emotional fitness, too. Shown to lower anxiety and depression.

I know when I get into the water my whole body feels like it exhales - with a deep sigh. 

You feel supported and can let go of everything you are holding on to, physically and emotionally.

This is what makes it such a great option for us ♥️

My old aqua aerobics class played music during class, it was so much fun, and doing line dancing moves is another favorite of mine. Love the football agility drills like karaoke and grapevine or tire drills- pretty much any way you move in the pool is good!

Just remember if you deal with any #hypermobility it can be really easy to twist something, we can do so much more physically in the pool than we can do on dry land that we can easily overdo it, so be careful. 

So many options, so little time, what is your favorite aqua fitness movement?

#lipedemafitness #lipedemalife #lipedemawarrior #lipedemamermaid 

Lipedema Fitness: Ten Years!

On July 13, 2013 we created LIPEDEMA FITNESS to help spread awareness of #lipedema and the importance of #fitness in treating our condition, all at a time when we were told exercise could make us worse.

A small group of us kept experimenting and trying different movements, various self care treatments, different ways of eating styles, etc. and as we all shared what worked, and didn’t work, and supported each other along the way, we grew this community into a powerhouse! 

You heard me right, you are a #powerhouse and I am so proud and honored to be on this journey with you.

We have no time for drama, we are too busy researching new ways to care for our bodies, and we share it all freely!

Thank you for experimenting with us, and thank you for sharing with us, and most importantly thank you for caring with us 💜

We have 11.5K members in our private support group, plus another 10K followers on public platforms and we could not do any of it without each and every one of you.

Thank you for the bottom of our hearts!

#lipedemafitness #10years #allorsomething #lipedemastrong #lipedemawarrior #lipedemalife #lipedemafighter #lipedemaawareness 

Fascial Fitness Training: Week 4

I’m smack dab in the middle of an 8 week course for #fascialfitness 

I’m taking the class to learn more ways we can help our fascia, because #lipedema is a loose connective tissue disorder, and connective tissue is #fascia 

Made sense, right?!

I’ve been hoping to understand my body better & look for other ways (outside of lipedema) where we can possibly understand more about what is going on with lipedema, what causes it, and also hopefully new ways of helping to treat it.

This week was all about FOAM ROLLING - and my first thought before I began the coursework, was ouch. 

I know how much foam rolling hurts my body, and over the years I've come up with some modifications to help (softer tools, different positions, etc.) - for this class I was hoping to get some better insight into why we roll, new modification ideas, contraindications, etc.

The first thing mentioned is that aging is the drying out of our fascia. 

We can't stop it, but we can do things to slow it down, and make it more hydrated.

Two of those things are moving, and massage. Fascial fitness and #myofascialrelease 

Both things help to unstick our drying out fascia; we need to squeeze the fascia to get the old fluid out, which lets new healthy fluid in. 

Makes sense - if you had a sponge full of dirty dish water and then didn't move it for a while, it would be dry and stiff. 

The first thing you would do is add water and wring it out so clean water could fill it up and be used again as intended. 

Our fascia is the same, it is between 50-80% water (based on our age).

Moving and massage are what keep it hydrated, keep it supple, which help us experience less pain and stiffness, and that is the goal of all the work we are doing.

Two additional things we need are to get plenty of water and rest. It’s a lot that our bodies are doing, and those are two easy but important things you can do.

#lipedemafitness #lipedema #lipoedema #lipolymphedema #healthyfascia #healing #knowledgeispower 

The Most Important Relationship is with You

Look up “RELATIONSHIP” in the dictionary, wait, do people still do that? Look things up? I do obviously. 

Anyway, it is a two part answer (even the answer has two parts).

In a nutshell, it is how you regard and behave toward something/someone. AND it is the state of being connected.

How do you treat those you are in a relationship with?

My guess, is that depends on how they treat you. It is a two way street (again with the two’s).

We think about significant others when we think about relationships, but in reality you are in a relationship to everything. Like everything.

Every person, animal, experience, EVERY thing.

But by far the most important relationship you will ever have, is the one have with yourself. 

It starts from the moment you took your first breath & it will end the moment you take your last.

How you regard yourself, behave towards yourself, matters. You matter.

You control the relationship you have. And that relationship with yourself sets up every other relationship you have. Every single one.

If you are not having the relationship you want, look at how you are treating you.

Change how you treat you and every relationship you have will also change. It’s a ripple effect.

Now that second part, the one about feeling connected. You, and how you treat you, also affects that. 

How can we feel connected? What are some things we can do?

• be authentic
• respect boundaries 
• go deeper than what you see 
• be genuine
• listen to them, pay attention
• schedule time for them

Think about those examples (and others that are important to you) and turn them towards yourself. 

Especially when living with a chronic illness, these things are important. Some days we may not have enough in the tank to do what we want, and that is ok. That is respecting our boundaries. 

Feeling connected is easier with like minded people who share similar experiences - support groups are a great way to feel connected. And they can help you improve your relationship with yourself. 

When you catch yourself saying or doing mean things towards you, stop and question if you would say or do the same thing to someone in your support group? You deserve the same kindness.

8th Annual Lipedema Triathlon

June 24 is the Lipedema Fitness 8th Annual #lipedematriathlon and the first part of this international virtual event is a 750M swim.

The reason the swim is first in a triathlon is due to safety.

It seems easier to have it last, especially if you wear as much compression as we do, but trust me, you become tired doing 3 back to back portions of the event, and the last place you want a cramp is in the water.

🏊‍♀️ How many laps is a 750M swim if swimming in a pool? 

That depends on the size of your pool - In the pool at the #srymca (which is a short course Olympic pool) I need to do 30 length of the pool.

🏊‍♀️ How long does it take to complete the swim?

That depends on the swimmer. For me it is around 30 minutes. The kicker is I have to then shower off the chemicals, dry off really well, so I can get into fresh compression, and get all my workout gear on - this takes me longer than the swim itself, and counts in my overall time - if I was being official.

The second part is the Bike…

The reason the bike is second in a triathlon is again due to safety.

Outside of potential injuries, traditional outside racers would be a nightmare to have all starting/ending at the same time for tracking purposes, too. Most of our local participants use stationary bikes, but we do have some that take off for outside rides. Coach plotted a course right from the YMCA. 

🚴🏻‍♀️ How many miles is a 20K? 

It is 12.4 miles.

🚴🏻‍♀️ How long does it take to complete the bike?

That depends on the cyclist. For me it is around an hour. I learned the stationary bikes at the YMCA turn off at 60 minutes. So my goal is always under an hour, as I learned that the hard way when the machine just stopped the first year. 🤦🏼‍♀️ I started bringing my iPad to the event and using the Peloton app, picking 2 30 minute rides seems the best for me. I love the artist series for motivation and been reviewing all our Friday Night rides to find my favorites. Two separate rides also gives me a chance to hop off the bike and stretch a bit, staying in the same position for too long can be extra challenging with Lipedema.

I also learned you can setup the bike for distance instead of time and then you don’t run into that issue. 

The third & final part is the Run/Walk…

The reason the Run/Walk is last in a triathlon is because it is the safest movement.

👟 How many miles is a 5K? 

It is 3.1 miles.

👟 How long does it take to complete the run/walk?

That depends on the participant. For me it is well over an hour now, since my walking took a hit after menopause. 

For me it is the hardest portion, and I use a treadmill so I have something to hold on to, others run outside or on the indoor track. I would rather do the first two portions twice than the walk. I might see about using my standup Walker (Helga) on the i door track or breaking up the walk if too painful this year.

I really wish I could find a pool that had lanes for swimming, an underwater bike for the 20K & an underwater treadmill for the 5K, and do it all at one go in the pool. No shower or changing until I was completely done.

Some participants get friends to help with number of laps/miles, or they take multiple days to build up to the full distances. 

Some MODs (modifications) we have used over the years are:

• A rowing machine, or stand up erg, for the swim
• Peloton or stationary bike with Peloton App, or a Cubii under desk elliptical, for the bike
• Mowing the lawn, or an underwater treadmill (someone is doing that this year), for the run/walk

All modifications count, we are an #allorsomething event!

We created this event to help spread #lipedemaawareness 

Signup for the 2023 event HERE. You can sign up for any part of the triathlon you would like to, you can sign up a team to each take on a portion, or combine your efforts in any way that works for you. The goal is spreading awareness and having fun with the #lipedemacommunity 

These amazing illustrations are by Olivia Kate and you can commission her to creat artwork for you, too! I wanted to express the vibe of the event, and she nailed it.

#lipedema #lipoedema #lipolymphedema #lipedemafitness 

MLD for Mental Health

The Lipedema and Lymphedema communities know how valuable Manual Lymphatic Drainage or MLD is to our self care, because of how backed up our lymphatics can get, but did you know it is also really helpful for your mental health, too?

It helps to reduce anxiety, fatigue and stress.

I got thinking a lot about the Linda Anne Kahn presentation from the #fdrs2023 Conference - “The Issue is in Our Tissue” and how we hold past trauma within our tissue.

With May being #mentalhealthawareness month I wanted to remind everyone that a simple self MLD session can not only help to get your lymphatics flowing but can be really healing for any emotional stressors going on, too.

Last night during the Lipedema Patient Roundtable we talked about #allorsomething and how taking even  small steps towards our self care or movement can have a big impact, that it builds upon itself, and this is also a very good option.

Even if you only have a few minutes - massaging the Vagus Nerve and/or doing some self MLD on the lymph node areas can help give you some instant relief emotionally, too.

I know self care can get very overwhelming, so when I can find double wins for the same treatment, I’m all in!  I can help Move My Lymph to help my physical self, and help my emotional self at the same time. #winwin 

Take care of you 💚

Stop Bullying the Person in the Mirror

Living with Lipedema is challenging physically, as well as emotionally.

We deal with body judgement from others on a regular basis, but we have no control what comes out of their mouths, only how we choose to respond to it.

But we do have control over what we say about ourselves.

Sometimes it is downright vile and full of hatred. 

Other times it is less obvious, maybe we make backhanded compliments at our own expense. Or we belittle something positive someone else has said about us.

Are you self critical? Do you focus on the negatives and struggle appreciating all your positives? 

Do you expect perfection? Keep thinking about what you could have done better? Lifted heavier, walked further?

Do you struggle accepting compliments? Do you discount what you can do because of needed modifications or taking a rest?

Would you say to another Lipedema person, what you say about yourself?

My MO was jokes at my own expense, a common one. Thankfully my loved ones call me out when those try slipping back in. And they do still try, we all have bad days. 

The advice we are given when trying to combat this is to become our own best friend. Which is a great visual.

But my boot camp to self love is a bit more robust, it is mama bear energy on high. Because we deserve it. 

And we don’t have time for anything less. So get your mama bear gloves on or whatever your defender energy is, and start defending you.

Step one: reread posts or comments you have made about yourself last week. Edit out the negatives and only leave the positives. You may find that leaves nothing, and ask what good is the post?

If you remove the post, so be it. You removed the hatred. And you are not the only one reading it, others will read that message for years to come. 

Tell us something positive about yourself… we will wait 🥰

May is mental health awareness month, what emotional self care are you doing for you?

FYI: that mirror is my actual mirror, it is by Trixie Mattel 💖 and my daughter has the 💚 one.

POST CONFERENCE BLUES

Post Conference Blues are real, and challenging. Going from the most supportive cocoon of acceptance amongst our peers, to the cruel world of vulnerability of someone living with Lipedema, can be crushing. 

But just like most things Lipedema, know you are not alone in that feeling. Give yourself some time to acclimate to your new reality, filled with new ideas, new hope, new friends, and yes, some deep sadness surfacing, as we get back into our daily lives.

It's not just a Lipedema thing, either. It is a human thing. Conferences bring together likeminded people, and broaden your horizons. Who wouldn't want to stay in that environment.

But adding the connection that FDRS brings to patients the world over, is unique. Life changing in fact. So that let down can feel overwhelming.

Have you ever been so engrossed in a great book, or television series that you feel part of the story? When it ends you feel sad, and missing the characters you have come to love? Maybe it is just me, but it feels heavy. And leaving real friends, that have been online friends you feel like you know, and now you actually do know - that love grows even deeper, walking away is hard. So why wouldn't we grieve for that emotional loss?

My good friend Brenda Viola, President of Vici Communications, LLC just shared some great tips in her recent blog, Post Conference Blues. I had the pleasure of spending time with Brenda at the recent FDRS Conference in Atlanta, her presentation on Settling Your Worth brought the house down at the end of a very emotional closing day of patient presentations.

The good news is that FDRS shared where the 2024 conference is going to be, so hope you can...

Meet Me in St. Louis!

April 19 - 21, 2024

And while we wait for the conference videos to be edited and shared on YouTube, go check out every year before here.

Thank you FDRS, and to all the sponsors, vendors, supporters, presenters and attendees - you all make it the extra special event it is.

More to come as I move through the grieving process and into the action process, but the grieving process is so important, and I cannot rush it, it will happen naturally.

Join us tomorrow, April 19 at 8pm EDT for the LIPEDEMA PATIENT ROUNDTABLE hosted by Lympha Press, where we will all share what it was like for us, and have some special guests as well.

Lipedema Fitness: Mobility Aids

Let’s talk about mobility aids. Not an easy topic I know.

Since menopause, my lipedema symptoms have flared up and my walking has taken a hit. I have not been able to walk around the track during workouts, have limited what I want to do outside of the house, and even getting to and from work has been challenging.

I’m still strong, still doing a lot of my workouts, but walking took the biggest hit. 

I’m not sure if you have ever experienced not being able to walk, but it is soul crushing to watch it slipping away again.

I even contemplated not attending the FDRS Lipedema conference this year, as it would require a plane ride vs a car drive (what we did last year). I didn’t think I could navigate the airport at my current walking ability.

Then I remembered Nancy, a lovely Lipedema friend from last year’s conference, and her amazing upright walker. I had seen many later stages at the conference using mobility aids, and I knew my next step, should we decide to go, was to get that walker Nancy had.

The awesome upright standing walker (or rollator I think they are called when they have wheels) I picked up is the one pictured - next to the grocery cart.

Grocery cart? You might ask yourself, is that a mobility aid? 

It sure is. 

A mobility aid is any device that aids you in being mobile. Walker, cane, walking sticks, crutches, wheelchair, and even a grocery cart.

When I go shopping, having a cart is a must. Not just for carrying the groceries, but because using it keeps my back in better alignment for walking. Which is exactly why when I saw Nancy using her walker in that very upright position, I knew it would be extremely helpful in navigating the airport, and the conference in general, for me.

Emotionally it is not easy to take that step, my walker is still in the box. But today is the day she comes out!

I started thinking beyond this trip and about the places I could start going to again.

I got excited thinking about being able to walk the track again, and my brain started swirling with new ideas… so get ready for some #walkerWODs this spring/summer 💜

Do you use a mobility aid?

Do GLP-1 Meds Work on Lipedema?

We have been talking about the GLP-1 meds lately, and what impacts they may be having on our Lipedema bodies.

Most of us living with Lipedema have tried many things over the years in search of some relief in the heaviness and the pain we experience, and to help combat the loss of our mobility.

We have come to learn that while we share in having Lipedema, we can be very different in how we present, in how we progress, and even in how we respond to treatments, exercise, supplements, etc.

What we do know is that Lipedema tissue is unlike regular fat. It does not respond to things in the same manner. Which is why I was very interested in what some Lipedema patients taking the GLP-1 meds were sharing about their experiences...

1. Experience an almost overnight reduction of pain - ex. going from using daily pain meds to not needing any at all!

2. After a couple years into using the GLP-1 meds, they can no longer feel the Lipedema nodules (not saying they have dissolved, but definitely sounds like possibly shrinking to the point of no longer feeling them).

I feel the medications must have an anti-inflammatory component with the rapid relief they are feeling, and maybe an anti-fibrotic component, which I have read some medical studies (outside of Lipedema) saying the same about them.

As someone with late stage Lipedema, the top two things I deal with are #inflammation and #fibrotic tissue. They are what cause me pain and limit my range of motion and cause loss of mobility.

These two factors alone have me interested in these medications, and I would love to hear more about what others are experiencing.

Are you a Lipedema patient taking one of the GLP-1 medications? We would love to hear about your experience.

We need research and data. And we need people to share their experience, maybe in an anonymous manner; because from what I am seeing, is this could be huge help in late stage Lipedema treatments, when most who are in this stage, are typically told there is nothing we can do for you.

Lipedema Fitness: Living in Compression

MARCH IS LYMPHEDEMA AWARENESS MONTH

Having #lipolymphedema means I wear #graduatedcompression every day for the rest of my life. 

I personally wear Juzo dynamic knee highs in 30-40 mmHg strength because of my secondary #lymphedema - I also prefer a cm silicone border to help them stay put and not roll down (which kills when it does). 

WHAT IS GRADUATED COMPRESSION: Graduated compression starts stronger at the bottom (40 mmHg) and gradually lessons (30 mmHg) as it goes up your limb, this helps your body push the lymph fluid up instead of it pooling in your limbs.

When I first got fitted for compression I cried. It was not easy to transition into it. 

At the time it only came in black or tan (now it comes in great colors), and was so thick; it took some time for me to get good at putting it on, we actually joke that putting compression on is the workout!

I’ve actually punched myself in the face on accident trying to pull up my compression leggings. Woof, and I know I’m not alone in that.

Wearing it under pants is challenging, and under workout pants can literally take your breath away - and wearing it in the summer can suck the life right out of you. 

BUT - I would much rather wear it than be without it, because when my legs swell up with lymph fluid - it is excruciating. 

The compression also helps my #lipedema and #hypermobileehlersdanlossyndrome by supporting my legs as I move, lipedema legs can be very heavy and the tissue moves freely (uncomfortable and painful) and the hyper mobile EDS means my joints can dislocate really easily. 

Having the support from the compression helps a lot. 

Let me know if you have any questions, and there is a great live product review of my knee highs in my Instagram video section from a couple years ago (click here).

LYMPHEDEMA AWARENESS: Peloton Rides w/ Us

Many of us with Lipedema also have secondary Lymphedema and we at Lipedema Fitness will be helping to spread awareness with some Come Ride w/ Us @onepeloton rides on Sundays at 2pm ET/EDT

I’m so excited by the rides we chose this year! 

They are reflection rides with the amazing Christine D’Ercole 🥰

Each week the focus of her ride will be on one of the core parts of her famous mantra:

I Am

I Can

I Will

I Do

We will join Christine on a mindful ride concentrating on the power of self talk.

Such an amazing tie in with our #mindfulmovent collaboration last month ♥️

Living with chronic illnesses like Lymphedema and Lipedema come with emotional challenges - I feel this mantra, and Christine’s message, will be very healing. 

Next Sunday, March 5th at 2pm ET, we will kick off these weekly rides with the “I Am” reflection ride (originally from 4/21/22), and I am so happy to announce this ride will be my participation in the Lymphie Strong 5th Annual Virtual Race for Lymphedema Awareness!i

Bravo 🙌🏻 Lymphie Strong! #movethatlymph 

Follow #lipedemafitness on the #peloton leaderboard

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We will be doing a special ride on Monday March 6th for the 2023 WORLD LYMPHEDEMA DAY and coach will be joining us for that one!

Check out LE&RN for more lymphedema awareness events!

Rest & Recovery Post Compare

JANUARY 2023 Post: Physical & Emotional R&R

Rest & Recovery is a regular go-to for me on Sundays, our hardest workout day tends to be Saturdays and my body lets me know it needs that rest on Sunday. 

But the rest day is equally as important for our emotional well-being. 

Giving yourself permission to rest (isn’t that a powerful statement, I give myself permission) to let go of the heavy lifting (mentally). 

Sometimes rest days are an active recovery, like a walk in nature, a recovery bike ride, etc. but some rest days are completely unplugging and detaching from all the distractions our lives may be presenting.

All the focus on mindfulness, creating daily prompts, and really thinking things through has made me emotionally exhausted this week. 

Time to tap out. I’m going to take a shower, spend extra time on non Lipedema self care, and look for a nice recovery ride, because my bike has become a place I can do as the instructors tell us, and drop the baggage. 

Turn my headphones up high and sing along, sorry family 🤣 How are you unplugging today? 

#mindfulmovement #lipedemafitness #restday 

NOVEMBER 2022 Post: Purely Physical R&R

Rest and recovery days are so important, and part of that should be tuning in to your body and seeing what you notice. 

Did you have a hard workout and feel specific muscles you want to target in your recovery today? Did you tweak something that might need massage? Do you need extra sleep?

For me today is about my glutes, lats, and calves. The hard workout yesterday has left me with some very sore muscles and as I gently work on those that are screaming loudest, they start to ease up and some of the others will then start to speak up. 

The coolest thing I’m noticing is my sore bits are muscular from a hard workout, and not painful Lipedema bits.

The other great news is how my journey has progressed over the past ten years, now instead of my lower legs feeling like one big sore part of me, like a solid mass, I can isolate calf muscles that are sore, and feel them, so I can stretch them and massage them to ease them. 

I liked my vibration plate session this morning and looking at a recovery peloton ride to take as well.

How do you recover?

POST COMPARISON

I find it interesting to review these two posts from a few months apart; one purely physical (from November) and today’s Mindful Movement Collaboration post that is both physical and emotional, with a lean towards the emotional rest needed.

I love how riding the bike in a Peloton recovery ride was the go-to for both ♥️

Finding an activity that can be helpful for both physical and emotional well-being is a win!

FRIDAY NIGHT RIDE WITH US: YEAR IN REVIEW… PELOTON ARTIST SERIES

Began in January with Amy Winehouse

For those that do not know, Peloton has a series of rides called their Artist Series, which are basically a 30 minute ride spotlighting one artist/band per ride, with various trainers leading the rides.

I began in January with #amywinehouse and then my friend justine joined in, and my sister a few weeks later.

The #queen ride was our first group ride, and to quote their song #dontstopmenow we were having such a good time and shouting from the rooftops for anyone who wanted to join us.

It felt a little like when we were back in our clubbing days and texting throughout the week as the next ride was chosen (I added the list of rides to a random name picker app to determine the ride each week).

We just wrapped up the year last Friday with #usher and already have #linkinpark lined up for this coming Friday. We hope they keep adding rides as we have done most of them.

If you want to join us - we ride every Friday at 6pm ET.

So many amazing rides

MOST FAVORITE RIDES: This was not an easy question for any of us, we each had a hard time picking just one, but my sister went with #fleetwoodmac and Justine went with #foofighters and I keep going through them all and am so torn, but would have to say #foofighters also. I have taken that ride numerous times, it is simply amazing, but the ride this year was super sad as we did so as a tribute to #taylorhawkins - we miss you.

I’ve taken some rides not seen here, and the #billieeilish ride was incredible, too!

My old school heart loved #davidbowie too ⚡️ 

The trips down memory lane were always pretty awesome, and #weezer I think surprised us most, what a fun ride!

On a personal note: I ride to help keep my mobility as someone #livingwithlipedema that is not easy, but I learned I ride to help keep my sanity, too. A full #mindbody experience.

We think Lizzo was the only artist with 2 rides?!

FUN FACT: I think #Lizzo is the only artist with 2 Rides?! We took both!

Thank you @onepeloton for your Artist Series!

Here is to continued Friday Night Rides w/ Us in 2023 - they may not be Artist series rides, but they will all be fun!

#pelotonateverysize #lipedemafitness #mindfulmovement #moveyourlymph 

One of these rides was not an artist series but was so fun!

Closing out the year with some epic rides.