Tuesday, September 20, 2022

Getting Grounded: Physically & Emotionally

Ten years ago I was at the lowest point of my life. 

Physically I lived in constant pain, I had been diagnosed with Lipedema in 2007 and followed all the advice given for self care, which sadly also included the warning that exercise could make our symptoms worse.


By listening to that advice and stopping my exercise routine out of fear, I got a lot worse. I could barely stand, let alone walk, and felt like I was watching my life slip away. I lived in constant pain and fear. I could not participate in my life, my husband’s life, my daughter’s life.


I became depressed, and in an effort to hold on to whatever sanity I had left while living with my diagnosis and progressing physical challenges, I started working on my emotional fitness.


I took writing classes, joined drumming circles, prayed, journaled, practiced meditation and even became a reiki master as a way to try to heal my body.


I figured if I struggled physically, and couldn’t take action in that way, I would become stronger emotionally.


Then my life took a major emotional hit, and I knew I couldn’t survive the physical and emotional challenges at the levels they were at, so in March 2013 I asked my husband (and CrossFit instructor) what the workout of the day was. I knew I needed to get stronger physically while the emotional side took a hit.


He asked me why I wanted to know, and I said I was tired of listening to nothing physically we could do, and I wanted to be able to get off the ground if I fell.


So many Lipedema friends had been posting about falling and needing to call 911 to get help getting up when they fell. I knew it was my future if I didn’t change something.


That was when my hubby became my CrossFit coach, and we began training to get me stronger so I could eventually get down to the ground safely, so I could then work on getting back up from the ground on my own.


Getting grounded saved my life. 


The interesting and life saving realization was that the physical training made me stronger physically, but it also made me stronger emotionally, because I was taking action. 


I was doing something, and by doing something I felt less helpless on the path I was on, in the fight against Lipedema.


Emotionally Grounded


When we look at the traditional meaning of “getting grounded”, we know it is more emotionally based, and typically means to get centered within yourself and figure out what is important to you, a grounded person is someone who is said to be mentally and emotionally stable.


When you live with a chronic illness, finding ways of staying grounded are key to your survival. The emotional side of chronic illness is equally as important, but less talked about.


Typical ways are doing things like staying connected with others (joining a support group), breaking big tasks (like all the self care needed) into smaller doable steps so you don’t get overwhelmed, focus on the one task at hand, practice gratitude, meditation, deep breathing, etc.


I found it fascinating that my getting on the ground physically was in fact grounding me emotionally.


It was one of the reasons I started Lipedema Fitness. I wanted to share that realization, I wanted to spread awareness of Lipedema, and the importance of staying active with it, I wanted to support other patients on a similar journey, and I really didn’t want anyone feeling as alone as I had.


2023 will be the 10 year anniversary of this blog, and the Facebook support group. This community of patients is changing how we are seen and treated, and now exercise is a big part of our self care, you do have to see what works for you, some forms can cause symptoms to spike, but by sharing what we are doing, what works, and what doesn't, we have learned Lipedema presents differently for each of us, and also our bodies respond differently to everything we try. 


We have to try things, see how they work, see how our bodies respond, and keep a journal if it helps, so you can remember what didn’t work, and what did. And please continue to share and spread awareness, by doing so you touch the lives of the patients and change the minds of the medical community. 


We have come so far in the last 10 years, just think how far we can go in the next 10!

Wednesday, September 14, 2022

WEDNESDAY WAKE UP CALL: Lipedema Fitness

Morning Routine - Before I get out of bed. 

Elevate your legs on pillows (should be above your heart for first three movements).

(10) Deep Belly breaths

(10) Toe Crunches - basically squeeze your toes and relax them

(10) Ankle Pumps


Remove pillows

(10) Leg Clamshell - knees bent, feet on bed, open and close your knees

(10) Knee Raises - bring bent knee up to chest and do (10) on each leg

(10) Glute Squeezes - clench your booty and then release 

(10) Bridges - keep knees bent, feet on the bed and then lift your hips up

(10) Trunk Rotations - I keep my bottom half flat on the bed and rotate the upper body slowly to one side then the other

(10) Groin Massages - tons of lymph nodes in there, this is a gentle touch,  MLD style, then I also use my fingertips spread out and rake up from thighs to abdomen, again this is not deep/painful, it is more gentle than that (trying to move lymph, not break up fibrotic tissue if that helps).

(10) Deep Breaths and then I massage around the belly button in expanding circles I go right to left. 


Then I get out of bed. I always feel better than if I get up before doing these movements.

You can modify anything, if you can’t do something then skip it, or do something similar, or do less than 10 reps. 

I don’t race through the movements, I like to do with intension, and they also don’t take very long.

This is my routine, what is yours?

#allorsomething  #wednesdaywakeupcall  #lipedemafitness

Thursday, September 8, 2022

Not Fragile Like a Flower

I remember hearing this phrase in relation to the notorious Ruth Bader Ginsburg #rbg …

… and it has been used in relation to the amazing #fridakahlo 

It resonates loudly with me, and it also resonates with those living with a #chronicillness 

The truth of the matter is, flowers are not so fragile either, maybe on the surface, but they come back time and time again…

I was reading some research on @ecowatch about scientists finding some so called “delicate flowers” (like the orchid and the sweet pea) have the remarkable ability to recover from injury. Able to bend and twist themselves after sustaining an injury to not only survive, but thrive!

As I’m healing from my own injury, this resonated with me loudly and had me thinking how much we are like those flowers, how much we bend and twist to not only survive, but thrive with #lipedema 

How are you bending and twisting?

Or are you twisting and shouting! 

“Well, shake it up baby!” However that looks to you, don’t let an injury sideline your life. Healing and all that goes into it is important, but so is seeing what else we are capable of. 

Anyone else want this on a tshirt? Think I’m turning my graphic into some @zazzle Merch!

Tuesday, September 6, 2022

LIPEDEMA FITNESS: REBOUNDING

REBOUNDING is a great way to stimulate your lymphatics! 

AND IT IS A LOT OF FUN!

You can do so on a mini trampoline or sitting on a fitness ball.

Gentle bouncing is all that is needed, and in as little as five minutes you can improve your lymphatic flow by up to 15 times!

In addition to improving lymphatic flow, it strengthens your muscles, and also helps improve your balance - and NASA did a study that showed 10 minutes of jumping on a trampoline is like a 30 minute run (but easier on your joints).

Trampolines have come a long way since I found mine (pictured) over a decade ago, now many have higher weight limits and even come with handles!

Shoes or no shoes (on a trampoline)? Great question, many thoughts on this - I prefer no shoes (great for improving balance, and less chance of damaging trampoline) but compression can make it slippery, so shoes work, too. Like everything, you have to try and see what works best for you.

If going the ball route: The size ball you need is based on your height, at 5’6” a 65cm one was recommended for me.

Important to use good alignment on the ball, knees bent at 90 degrees, feet planted firmly on the floor, spine straight and sitting on your sit bones, head over spine and eyes looking forward.  I sometimes angle my toes under the sofa or bounce in a corner to help if balance is of concern.

Friday, August 26, 2022

Lipedema Fitness: Peloton App

You know I share my peloton rides here a lot, I love them! (FYI: We have a group ride tonight at 6pm if you want to join us - I am LipedemaFitness on the peloton leaderboard). I have been using the @onepeloton app for almost 2 years now, and guess what? 

I don’t have a #peloton bike!

Did you know you can get the app without the bike? 

You can use your own bike (or even an under desk elliptical, like I’ve been using while rehabbing my knee). The bottom two pics are what I personally use with the peloton app… the #Exerpeutic 675 XLS folding bike I got off Amazon and the #cubii under desk elliptical. 

You also have access to all the trainers and all the classes, not just the cycling ones! 

Classes like #strength #yoga #cardio even #meditation and seven others to choose from.

I have even used the treadmill classes while walking in place, with no equipment at all!

You do have to modify, like I can’t stand on either piece of the equipment I use, and you don’t have all the same controls (resistance and cadence are more trial and error to match the trainer’s instructions, but coach got me setup with a #wahoocadencesensor and it helped me figure it out to an extent).

My sister has the Peloton bike and loves it! I was limited by its cost and weight limit. The stationary bike I bought was under $300 dollars with a weight limit of 400lbs. I think it has gone up some, but I have had it since May of 2020 and would buy it again… and do you see that seat!

I have no connection to Peloton, other than I am a big fan of their app, it has been a game changer for me physically and emotionally ♥️🚴🏻‍♀️

#pelotonateverysize #lipedemafitness 

Monday, June 27, 2022

Lipedema Awareness: You Are Not Alone

The Lipedema journey is a challenging one. 

Watching our bodies morph into something we don’t recognize can be scary, painful and extremely difficult to navigate.

The journey changes us emotionally, too. We can have deep depression associated with living with a chronic illness, and have to take many steps to heal (repeatedly), because it is an ongoing/progressive condition.

But there are amazing people we find on the journey with us, and that alone helps, to not feel so alone, but even more, they elevate us, they build us up, they give us new found strength, and slowly our view of our body, our condition changes, and we can find a deep live and appreciation of all our bodies do for us every single day!

I had to change my perspective because I was in that deep depression, feeling like nothing we can do (because that is what we were told, because currently no cure). 

But by starting training again I got back so much more than my mobility, I got back my soul, my essence of who I am, who I want to be, and appreciating all this life can show me. 

We get this one body, this one shot at life, and I’m not going to sit by and watch it be taken from@me, I’m going to fight like hell to do what brings me joy. It may look differently than it once did, I may have to modify how I see it, but try I will ♥️ this community gives me that strength to keep trying. 

This #lipedemafitness community lifts me up. I thank each and every one of you on the journey with lme.

Sunday, June 26, 2022

7th Annual Lipedema Triathlon Local Finishers

7th Annual #lipedematriathlon took place today and I want to thank some people…

1. all my training mates (who also participated today- woo hoo!!!)

2. @juzocompression and @lympha_press for sponsoring our shirts and water bottles

3. The @srymca for hosting us locally every year 

4. Most importantly to my coach/hubby for getting me ready every year - I couldn’t even think of taking on this challenge without you 💜

So much gratitude in all who donated and cheered us on AND all those that signup to participate each year! You are all rock stars!

The swim was more challenging than ever, since it was the first time back in the pool since covid.

The shower after pool and then getting back into fresh dry compression and clothes for the bike was also more challenging than I remember, has been a while since I’ve swam/showered/biked at the gym. I just couldn’t get dry and compression over even slightly moist skin is 🤯😫😓

The bike was more challenging, too, since I’ve been using my bike the first was off and tweaked my knee at the start of my second ride, but thankfully it eases up and I could finish the ride. It was my 200th @onepeloton ride during the #lipedematriathlon !!! That is what I have been working towards and it felt awesome to complete it during this event!

The 5K unfortunately did not happen, between the mobility and knee tweak it was a no go. But I am beyond thrilled with my performance today, so honored and humbled that I can still do it seven years later!

Time to recover! Happy Saturday all! Stay tuned for a full review with all the virtual participants!





Monday, June 20, 2022

Living With Stage 3 Lipedema Live: Gil Hedley and Dr. Herbst

Very excited to announce our next Living with Stage 3 Lipedema Live will be on Sunday, July 3 at 2pm EDT on the Lipedema Fitness Instagram page.

With very special guests: Gil Hedley and Dr. Karen Herbst for a discussion of Lipedema and Fascia.

Since my Lipedema diagnosis in 2007, I have always been interested in the cause, more than the symptoms, of my condition. Don’t get me wrong, I spend a lot of time caring for my symptoms every day, but my curiosity keeps me digging for answers and understanding.

My curiosity into the cause had me looking into fascia… If Lipedema is a loose connective tissue disorder, why aren’t we focused more on things like fascia? 

I found Gil Hedley’s fascia fuzz video on YouTube, and have been watching and learning as much as possible from his integral anatomy video series ever since. (Warning the video link is graphic, Gil works on human cadavers, but does so in a considerate way that is less shocking than you think it might be).

For those that don’t know, Dr. Herbst is a Loose Connective Tisue Disease Specialist and the Lipedema guru in our community, she has been a champion in the field for decades and always looking for new ways to improve our experience with our diagnosis. You can click here for a copy of the Standard of Care for Lipedema in the United States that she and many of her colleagues worked on. 

And I thought wouldn’t it be great to get Gil and Dr. Herbst together. 

I cannot express how excited I am to be part of this discussion. Very appreciative of them both spending time with us.

Hope you can join Crystal from @cfitrevolution and myself, Pattie from @lipedemafitness) as we welcome them and begin the discussions. 

Tuesday, June 14, 2022

Lipedema Awareness: Pear Shaped

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

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

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

We want early diagnosis for all those with Lipedema. 

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

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

Spreading awareness helps a lot! 

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

It’s been 15 years since a Certified Lymphedema Therapist (CLT) diagnosed me, and I still cannot find a doctor in my area that knows what it is. 

And the last time I visited a CLT in my area, I was told they know a piece of the Lipedema pie, but with all my researching and advocacy, I know the rest of the pie. 

So basically I’m doing everything possible to treat it on my own, and there is nothing they can do beyond what I’m already doing.

While that makes me proud to know I’m doing everything I can in their eyes, I’m still more curious on finding better treatments and answers. 

Stay curious! Ask questions, dig deeper, keep sharing, spread awareness!

Monday, June 13, 2022

Lipedema Awareness - Strength Training

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

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

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

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

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

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

Keep fighting for your strength, and mobility. Seek out whatever helps you get there. Share what you are doing, #wearestrongertogether 

Sunday, June 12, 2022

Lipedema Awareness: Column-like Legs

JUNE IS LIPEDEMA AWARENESS MONTH - a common term used to describe Lipedema legs is “column-like”. Meaning less definition in the thigh, knee and calf areas so the leg looks like a column.

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

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

In researching this it sounds like it is due to loose connective tissue and inflammation. Lipedema is considered a loose connective tissue disorder.

Reading deeper I found out that connective tissue remodels after hormone changes like puberty, childbirth and menopause, etc. and there is a belief that estrogen plays a major role in that remodeling.

We know Lipedema is primarily a women’s based disorder, and they have said there is a link to estrogen. I think I need to dig deeper into these functions to try to understand what is going on, as my body has changed drastically once again after menopause - which is when there is a huge drop in estrogen production, which some believe also changes the way fat is stored in our bodies. So much to try to understand.

Note: Not every type of Lipedema has column shape legs, types 1 (buttock only), 2 (buttock, hips and thighs), and 4 (arms only), don’t involve the lower legs like types 3 (buttock, hips, thighs, and calves) and 5 (calves only).

Saturday, June 11, 2022

Lipedema Awareness: Flying with Lipedema

JUNE IS LIPEDEMA AWARENESS MONTH - and flying with Lipedema can be incredibly challenging.

First - our Lipedema tissue can easily set off the TSA body scanners, which require an agent pats you down. A couple suggested reasons are scar tissue will set them off, so maybe all the fibrotic tissue is causing it. Hot spots or wet spots (sweating) can set them off, think about all that extra compression and anxiety about flying - a possible sweaty scenario for sure. Even loose fitting clothing - too much space between clothing and skin might set it off, too.

Second - swelling can be an issue, so wearing graduated compression is even more important when flying, because the cabin pressure decreases as we rise, so our blood and lymph circulation slows down. Add to that sitting for hours on end, with limited room to move, means even those without Lipedema experience swelling.

Third - our Lipedema hips can make fitting in the seats painful, especially as the size of airplane seats continues to get smaller and smaller. 

As you might have noticed, I used a @southwestair plane in my graphic, I did so as a thank you to them for their COS (customer of size) policy, with it you can purchase a second seat and fit more easily, and they will refund your second seat after the flight. 

You don’t need to purchase a second seat, but one will only be available if the plane does not get sold out. On the last trip we took, three of the four legs were sold out and I would not have gotten an extra seat in that scenario. 

With the COS policy, you can also board first and bring someone else traveling with you for assistance, that went a long way in getting situated and not feeling like you were holding up other passengers. My daughter and I boarded after anyone needing assistance and easily found three seats together.

I wrote a 2 part blog post about flying with Lipedema in 2019, if you want to check those out for more info. Part I, and Part II. I find researching to help get prepared went a long way with making me feel comfortable flying.

Friday, June 10, 2022

Lipedema Awareness: Aqua Fitness

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

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

The water acts like graduated compression (which many of us with Lipedema and Lymphedema must wear) and being in the water (and the natural graduated compression it provides) helps improve our lymphatic and Venus functions (aka it reduces swelling), and personally it is amazing for my mental health, too!

It is my happy place! AND My favorite part of the Lipedema Triathlon!

I was always curious about how the water compression compared to the graduated compression garments I wear, and when I couldn’t find answers anywhere, I turned to science and broke it down. 

A couple years ago I wrote a blog post about it. Did you know walking in only 3 feet of water is equal to about 67 mmHg (as an example, I wear 30-40 mmHg grade compression).

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

The only downside is that gravity wake-up call when you climb out of the pool, which makes already heavy legs feel even heavier. And don’t forget to take extra good care of your skin after.

Thursday, June 9, 2022

Lipedema Awareness: Self Management

Lipedema is considered a self management condition. Meaning it is up to the patient to manage their Lipedema/health. 

Managing a chronic and progressive condition is challenging; the upside is you become the expert on your body (your own best resource). 

The downside is you feel like a Guinea pig.

Self management is meant to have the patient manage their symptoms and treatments, checking in with a medical professional as needed (typically annually) to ensure things run smoothly.

But with Lipedema most medical professionals don’t know what Lipedema is, or worse, don’t believe us.

Over the years we have discovered we can all present with different symptoms and we can all respond differently to treatments tried. What works for one Lipedema patient may not work for another. Which amps up the challenge of living with a chronic/progressive illness.

My best advice is to start a journal (better yet a binder) for tracking your self management “experiments”. 

Not only will it help you keep track of what your symptoms are, what treatments you have tried, and how your body responded, but also becomes something you take to your Dr. appointments. 

For we also learn how to become our own best advocate. Standing up for ourselves and weeding out those who do not serve us well on our health journey.

JUNE IS LIPEDEMA AWARENESS MONTH - Spreading awareness is not only about reaching those who have the condition and may not know, but it is also for educating medical professionals and hopefully guiding research, and more.

Lipedema is best served when medical professionals and patients can come together and share experiences/knowledge to move the treatments forward and hopefully one day find a cure.

Knowledgeable medical professionals and researchers give us hope, and that is a huge help when living with a chronic condition.

Wednesday, June 8, 2022

Lipedema Awareness: Fibrotic Nodules

Lipedema tissue is unlike regular adipose tissue, it has hard fibrotic nodules that can range in size, and continue to grow larger as the condition progresses.

The nodules feel like peas, rice, beans, etc. depending on their size, and you can feel them just under the skin. 

You can feel it by gently touching and palpating the area, which is one of the techniques used by trained medical professionals to diagnose the condition.

But be careful if you are touching someone with Lipedema, as it can be excruciating for them to be touched. 

They believe the fibrotic nodules are created because Lipedema is loose connective tissue that allows more fluid to collect than a body with healthy connective tissue. The extra fluid limits oxygen getting to the area which creates a viscous cycle of inflammation and fibrosis, so the nodules continue to grow.

You can read more in the Standard of Care for Lipedema in the USA.

JUNE IS LIPEDEMA AWARENESS MONTH please help us spread awareness so others can be diagnosed sooner. Thank you!

Tuesday, June 7, 2022

Lipedema Awareness: Blood Vessel Fragility (aka Bruises Easily)

Everyone knows how easily bananas can bruise, and that is also something people with Lipedema share in common, we bruise easily - which is most likely caused by an increased fragility of our blood vessels.

Blood Vessel Fragility diseases share something in common, too… defective collagen.

Defective collagen weakens the vessels and makes them more susceptible to bleeding from minor trauma.

You would think that just means we should take in more collagen, but I’ve tried this and personally it causes pain in my feet, but others find it does help their Lipedema symptoms.

One of the biggest lessons learned when living with Lipedema, is that we all are different in how we present with our symptoms, and in how treatments, movement, ways of eating, supplements, surgery, etc. works for each of us.

Sharing in support groups is so helpful; seeing what others try & how it works for them is helpful. Not just for ideas, but to help us to not feel alone (or to blame ourselves) if something works for others, but not for us. We are not to blame.

JUNE IS LIPEDEMA AWARENESS MONTH - please spread awareness, so we can get others diagnosed sooner, when treatments will work better.

Monday, June 6, 2022

Lipedema Awareness: Small Fiber Neuropathy?

You may have experienced Paresthesia (aka. pins and needles) - it is a common experience when you lay funny or cross your legs too long etc., it happens because of pressure on a nerve, it feels tingly and numb and when the pressure on the pinched nerve is released it goes away.

With Lipedema you can also experience random sharp pains (different sensation to pins and needles); it feels like a bee sting, or someone taking a pin or needle and sticking you with it in various places on your body (mine is mostly in my legs).

I believe this is also nerve related, and recently came across “small fiber neuropathy” as a potential cause. More research to do.

This pain happened a lot when my symptoms were at their worse, but since we started training in 2013 and moved to a clean eating style that frequency has dissipated, it still happens but much less. 

At my worst I also would have numbness in the outer edges of my feet, and the pins and needles on top of the (Electric-shock level pain randomly throughout the day) is what WebMD describes the pain as (listed as one of the symptoms on their page about small fiber neuropathy).

The WebMD list also included other symptoms we share about in our group… like cramping, sweating, gastrointestinal issues, etc.

One of the questions I’d like to address with our Lipedema medical community at the next Lipedema Patient Roundtable (hosted by Lympha Press) on June 15, 2022 at 8pm EDT. Click here to register.

JUNE IS LIPEDEMA AWARENESS MONTH, please spread awareness, so those with the condition can get diagnosed before they are late stage 3 #lipolymphedema like me. Thank you.

Wednesday, June 1, 2022

Lipedema Awareness: Lipedema Translates to Fluid in the Fat

The visual heaviness of this image, is exactly what it feels like when I walk, as someone with Stage 3 #lipolymphedema 

Do you remember playing with water balloons as a Kid? Trying to see how much water you could fill up the balloon with, without it bursting? Remember the way it pulled and moved as you moved your hand?

Lipedema feels like you are wearing a heavy, water-filled suit, that moves independently with every step you take. It is heavy and tiring to carry around, and to some it feels like it sloshes as you move, to others it feels like cement.

At a recent trip to the ocean, my body became one with the ocean, I was so buoyant I was being tossed all over, even Coach could not hold me still sitting in the edge of the beach. I got sea sick within minutes, and that was heartbreaking as the ocean is my happy place.

JUNE IS LIPEDEMA AWARENESS MONTH, please spread awareness, so those with the condition can get diagnosed before they are late stage 3 like me. I have Primary Lipedema, and because it took so long to get diagnosed, I was late stage and had lymphedema on top of it. Early diagnosis would have gone a long way in saving my mobility, and slowing progression. I spread awareness to help others get diagnoses sooner than I was.

Friday, May 13, 2022

IN MAY WE WEAR STRIPES


May is EDS (ehlers-danlos syndrome) awareness month. I have hyper mobile EDS or hEDS. It is a connective tissue disorder that for me = easily dislocated joints. I have to be extra mindful in how I move, especially during training. 

The zebra is the symbol for the Ehlers-Danlos Society. Why? Because in the 1940s a doctor coined the term “if you hear hoofbeats, think horses, not zebras” when teaching new students. Meaning don’t look for the rare diagnosis.

Great when teaching, not great when you actually have a rare disease. So I love how they claimed the zebra and wearing your stripes in May to help spread awareness!  I love clever ♥️🦓

hEDS is a common comorbidity of Lipedema, so it is far from rare to a lot of us.

Thursday, May 12, 2022

7th Annual Lipedema Triathlon - June 25, 2022

It is OFFICIAL!!!

JUNE 25 is the 7th Annual Lipedema Triathlon!

Locally being hosted by the Saratoga Regional YMCA - thank you!

But this is a virtual event and you can participate from anywhere! Ask the YMCA in your area if you can do it there, at your local pool, or even in your own backyard.

This event was created in an effort to spread awareness for Lipedema, and the importance to keep moving and challenging ourselves.

It is all-inclusive, meaning you can choose your level of involvement (do one lap, one mile, one leg of the race, or the full TRI, whatever your fitness level).

Triathlon races vary in distance, the one we are focusing on is the Sprint: 
  • 750-meter (0.47-mile) swim
  • 20-kilometer (12.4-mile) bike
  • 5-kilometer (3.1-mile) run/walk

Thank you to our Sponsors this year: The Saratoga Regional YMCA, Juzo Compression, and Lympha Press. Juzo and Lympha Press sponsored the official Race T-shirts / Water Bottles for the first 50 registered participants! Once all the orders are placed, we will see how much funds we have left for the next round and will be contacted in the order of registration signup, so don't miss out...

The current round of signups can be done here (please use a reliable email so we can contact you if funds are available for more shirts/water bottles:

Here are some of the 2021 Lipedema Triathlon Finishers! It is an international event, with participants from all over the world! Such a great way to spread awareness of Lipedema, and the importance of staying active!


Thursday, April 14, 2022

Emotional Overload: Preparing for the FDRS Conference

I'm preparing to travel with my family to Cleveland, Ohio next week. It is for the 2022 FDRS Conference, where I have been given an amazing opportunity to be a speaker, sharing how finding balance while living with a chronic illness (Lipedema) is so important.

We spend a lot of time talking about how important staying active is with Lipedema, and it is the main focus of the support group and work I have been doing since 2013. But there is a huge emotional/mental health component of living with a chronic illness, which is equally as important to focus on.

The Living with Stage 3 Lipedema live series I started with Crystal from CFitRevolution has been focusing on the emotional/mental health side for the past several months because it is a topic not really addressed in the community much.

It is easy to understand why it is not addressed, it is challenging living with a chronic and progressive condition; spending your life always pushing forward, maintaining self-care, staying active, and trying to stay positive in your efforts to slow progression. It is a daunting task.

If we think too long about the journey we are on, we can stall. We can start down that path of what-ifs, we can focus on not seeing improvements (even if we can feel them), we can let the exhaustion set in, and it all can build up and take us out emotionally. So, we tend to not focus on those things. 

But by not discussing them, we can live in silence alone, and become overwhelmed and that is a scary place.

The trick is to talk about them, acknowledge the emotions, and work on them, but don't live in them. Finding ways to slowly release the pressure building up along the way. It doesn't have to be all or nothing. We go back to our motto of all of something.

Lately, I've been off. I chalked it up to regular personal life stuff, work stuff, new year stuff, pandemic stuff, etc. All of which are part of it. But I also thought maybe I'm thinking about the emotional stuff too much, and that itself has me staying in the emotional place too long?

We have learned so many good tools and tips the past few months during the lives, from our special guests: Linda-Anne Kahn, Beth Sabo Novik, and Karen Windsor. Each sharing ways to help address the emotional side of living with a chronic illness. Click their names to be taken to the replays.

This morning it came home for me, an understanding into my "feeling off" emotionally. I miss my friends that I have lost over the years, fighting the progression of their Lipedema.

One friend, Katia Page, AKA "The Lipedema Queen" (that name suited her to a T), I met in 2014 at my very first FDRS Conference. She was amazing, had just had one of multiple surgeries for her Lipolymphedma and then got in a car and drove to DC just to be at the Conference. We even walked the runway, showing off the latest in compression that Yvonne Russell brought to the conference.

Katia was a huge advocate of spreading awareness of Lipedema, the importance of staying active, and feeling beautiful. She was gorgeous, and her laughter could melt away any worry you might have.

She would reach out to me privately and we would talk about such amazing ideas she had on spreading awareness. . .

  • A fashion queen, she reached out to stores to get donations for Lipedema patients, so they could feel beautiful in new fashionable clothing, she had photographers come to every event and have fashion shows, and she even setup makeovers with Sephora. 
  • A fitness queen, she was always in her favorite New York Sports Club pool, and in 2017 invited several of us to join her for an AquaRun 1K event. I had no idea of what that even looked like, but she did - and it was fun. She was always fun.

The Lipedema Queen’s - 2017 AquaRun Warriors

As I make my plans to travel to the 2022 FDRS Conference, I can hear her laughing from up above, "knock their socks off girl, you got this". Katia would not want me staying in the emotional place too long, she would want me fighting!

I am looking forward to the conference, I cannot describe the feeling of walking into a room full of people who 100% understand what you are going through. I am planning on loads of hugs from friends I've only spent time with over zoom. It will be absolutely amazing.

I am honored to be a speaker. To share my patient perspective. But it comes with great responsibility, too. Sharing what I have learned over the years, and what (who) I have lost, a delicate balance of physical and emotional healing. 

But I know I have angels on my side, watching over me, over us - cheering us on! Together we are stronger. Hope to see you in Cleveland, and beyond!

Tuesday, April 12, 2022

Flat Knit vs. Circular Knit Compression

When I first heard about flat knit vs. circular knit, I was oblivious to my Lipedema condition, and the graduated compression I would need to wear for the rest of my life to manage it.

I heard these terms many years before my diagnosis when I was learning how to knit. 

The easiest way to learn how to knit is just that, the knit stitch (vs. pearl, but that is a post for another day, and another blog). The easiest tools when first learning to knit are straight needles, which will produce a flat knitted garment, think scarf.

Straight & Circular needles
But once you learn the stitches, and you have made a scarf (or 12), you start dreaming of making hats, mittens, and socks, and you get introduced to circular needles, and what is called knitting in the round. This becomes faster and easier for a lot of knitters. No sewing the pieces together, it comes off the needles seamless.

So, how does all this knitting talk tie in with graduated compression?

Well, thankfully we don't have to knit our own compression garments, we have specialty vendors to make them for us, and just like knitting, they can produce either flat knit (custom) or circular knit (off the shelf) options.

So, what are the differences?

Micro-massaging

Circular Knit - 

  • Comes off the machine in a tube (Seamless)
  • Off the shelf product (comes in ready-to-wear sizes)
  • Can buy online (once you know your size)
  • Available in fun colors/patterns
  • Thinner, and moves well when active
  • Can be tricky to fit if you have lobules
  • Not good to sleep in, can bind and cause damage

Flat Knit - 

  • Comes off the machine flat (like a piece of fabric)
  • Custom made to your measurements (will have seams)
  • More rigid
  • Thicker
  • Less likely to bind (hurt) at knee and ankle creases
  • Higher containment
  • Safer to wear at rest

When I was first diagnosed in 2007, the options were custom (flat knit), where they take your measurements and specially make your garment, or off the shelf (circular knit), where you take your measurements and match it up to a vendor’s size chart. 

Custom are expensive, mine were close to $1000 for one garment (full foot to waist), which for me, insurance did not cover. I purchased once, and found it not tolerable for me. It felt very restrictive, I could barely walk in them, and when I did they felt like they were pulling me down (physically and emotionally). I tried having them cut into thigh highs and a short, which was a lot better, much easier to get on, but the thigh highs did not stay up, so again, an issue for walking, let alone a workout. I opted for the off the shelf (thankfully my measurements fell within the parameters, and they were more like $90 a pair (for knee highs). The knee highs are good for about 6 months, mine are Juzo dynamic model, and I can wash them in a washing machine and dry them in the dryer. They are latex free, and laundering them brings them back into shape. While I don’t have coverage under my insurance for them, I can purchase on an FSA (medical flexible spending account through my husbands employer).

Later on new micro-massaging garments started coming out. They are not as much compression,12-18mmHg (compression is measured in millimeter of mercury) vs. my knee highs which are 30-40mmHg, but have a special weave that helps to move your lymphatics when you move in them. I add these (I buy the bioflect line) to my knee highs for all my workouts, the are ankle to just under my sports bra, and they are easy to squat in. 

The combo works for me, and that’s the most important takeaway, find what works for you, even if that means going a little lower on the compression strength to be able to do what you want to do, wearing something is better than wearing nothing.

The latest technology I’ve seen is adding FIR (far-infrared therapy) to the micro-massaging garments,  There are special minerals woven in, that works with your body heat to go deeper, claiming it can help with joint and ligament and muscle pains, and so much more. Fascinating stuff to investigate into more. 

Micro-massaging garments are circular knit, you take measurements and apply them towards the vendors size chart to know what to order (off the shelf).

Compression is a huge part of caring for Lipedema and Lymphedema. A couple years ago I had the pleasure of touring Juzo’s headquarters and seeing firsthand how compression is made, after you witness all the work that goes into a single pair of knee highs, you understand the cost, I just wish insurance companies would do the right thing and start covering them. 

Wednesday, April 6, 2022

You Are Your Own Best Resource

With Lipedema we have learned over the years that we all present differently with symptoms, and we all respond differently to treatments. We have learned by personal trial and error.

We share to spread awareness, to hopefully help others be diagnosed sooner than we were, and we share how we are personally treating our symptoms and the things we find that help us, in the hopes it may help someone else.

I am not a doctor, I am not a CLT, nor am I a personal trainer; and even if I was any of those, I am not yours. I do not know your body, your symptoms, how you present or how you will respond..

Even all the amazing doctors, surgeons, CLTs, personal trainers , etc. who share about Lipedema are not your personal doctor, CLT, etc.

You have to learn about your body, your symptoms, and treatments that work for you. You have to take ownership in your care.

What you see online is information and ideas for you to investigate for yourself, to talk to your doctor, your CLT, etc. about. 

You have a responsibility to protect yourself. Take in what you learn, and investigate if it sounds good to you - and please ease into anything new.

Be weary of anyone who says this is what you must do, if it worked for me it will work for you, if I can do it you can. 

That’s not how lipedema works, that’s not how life works. It is your one body, and you need to do the work to learn more about it. Learning what works for someone else is great, and people sharing has helped change how lipedema is treated, but you are still responsible for your body.