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).