5th Annual Lipedema Triathlon

June 27th  will be our 5TH ANNUAL LIPEDEMA TRIATHLON, and even Covid-19 can’t stop us.

The gym/pool may be closed but we are pressing on. All participants will be virtual, so make sure to say where you are participating from and what event(s) you want to do.

Biking and running/walking are easier to do from home, but what about swimming? What if you are like me and no access to a pool? How about rowing or rebounding? Or come up with your own version of what it looks like for you.

This event is our ALL OR SOMETHING challenge. One lap, one, mile, one step forward to your goal!

Not sure how much the following info applies this year with Covid-19 social distancing, So follow your own instincts and the guidelines in your town...

As I found out in our first year, triathlon races vary in distance, the one we focus on is the Sprint: 750-meter (0.47-mile) swim, 20-kilometer (12.4-mile) bike, 5-kilometer (3.1-mile) run/walk. 

Here is a break down of what we will be doing come June 27:

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

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

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

A big part of our efforts to include as many people as possible, is to make the event virtual (meaning you can do it anywhere - in your own hometown, in your local gym, in the park, etc.). You can choose to do it as a relay as well. Just get a friend or two and each take a section of the race. Or get a group and each take a lap of the swim and/or a portion of each section of the race. 

It's a virtual race - you can do it anywhere!

If you want to do the entire race, but not sure you can complete it in the 9am-1pm time-frame, spread it out over the entire weekend, week, rest of the month. However you want to be involved, we want you to do so.

Here is a link to sign up:
https://www.signupgenius.com/go/5080448abad2fa57-lipedema4

Want to help, but not able to participate? You can donate to either the Saratoga Springs YMCA or Fat Disorders Research in honor of the Lipedema Triathlon. Both are great charities doing a lot to help us spread awareness and fight back. Thank you!

June is Lipedema Awareness: Learning to Love Your Body

One of the biggest reminders during Lipedema Awareness month, is to find a way to love the body you have, right now, in this moment.

That is not always easy, but starting from a place of kindness towards yourself can change the outcome of all the efforts you put in to living with Lipedema.

Whatever we are thinking about ourselves, saying about ourselves, that is what our potential becomes. We are limited by our own thoughts.

So when you hate your body, when you live in negativity, then your body cannot improve. 

No matter how much effort you put in to “Fixing” it, until you change how you see yourself, you won’t improve, and no change will ever be enough.

Instead of focusing on what you dislike about your body, focus on something you do like. It doesn’t have to be all or nothing, slowly start changing how you see yourself, slowly change the way you talk about yourself. 

I know this because I used to feel that way. Then one day I was in a seminar where the presenter said “treat yourself how you would treat a two year old child”; she asked us if we would talk to a child the way we talked about ourselves.

Tears streamed down my face, because I had a two year old child at home, my beautiful baby girl, who lights up any room she enters. I would never say the things I was saying regularly about myself to her, and I would jump all over anyone who tried to. So why was it ok for me to say those things to myself? It wasn’t. It isn’t.

So even though I have advanced Lipedema, that changes how my body looks, how society sees me, how I am able to move, and it sure tries to take away so much from those who have it, I had to stop hating my body. It is not my body's fault I have Lipedema. 

I needed to refocus my attention, my anger and frustration, because what I was truly angry and frustrated about, is that Lipedema was first diagnosed in 1940 and little has been done in eighty years to help those with it, EIGHTY YEARS!

Then I began learning to love myself by stopping the negative self talk, It took time, it was not easy to break this habit. I started changing what body images were in my Instagram feed, by following body positive people instead of what society told me I should be seeing. By doing so, I could see bodies like mine wearing gorgeous clothing, I could learn where they shop; I could see bodies like mine being active, and see how they made modifications to do what they love.

I started finding ways I could improve my own body image. I love feeling strong, I’ve talked about this before, by strength training and getting stronger, I feel like I’m fighting back against Lipedema, like it doesn’t have all the control.  I’m no longer a victim of it.

I cant change that I have Lipedema, so I can either give up and let it consume me, or I can take action, I can do something, every little effort I make towards my self care, makes me stronger emotionally, and physically.

The choice is yours, continue to live in self hatred and negativity, or start finding ways to love yourself. Show your two year old self how wonderful it is, right now, in this moment, and redirect your anger towards how little has been done for Lipedema. Start spreading awareness, in whatever way you can, take action!

Huge shout out to my dear sweet friend (and fellow Lipedema sister), the amazing Kathryn Lynn Hack for creating such beautiful body positive art. She offers art classes for all levels, and you can commission her to create artwork from your image, too. https://www.klhack.net/

Trust me, seeing yourself as art will change your perspective, and it just might change your life ♥️

...and yep, if you didn’t already guess it, that is me in the picture.

When I Wake Up: A Day In The Life of Lipedema

My morning typically begins around 6 or 6:30am with a mad dash to the restroom to urinate, which is a good thing, it means my lymphatic system is still working.

When we sleep, we are elevating our legs, which gives the edema a chance to more easily move out of our system (i.e. the need to urinate). If you find yourself needing to get up in the middle of the night, I have found elevating my legs a couple hours before bed to help.

While in the restroom, I brush my teeth and wash my face. Then I start my Lipedema Self Care...

6:30am Pneumatic Pumping: 1 hour session, but to get it setup, get in the garment, and then get back out and put it away again, it is about 1.5 hours. If I have extra time, I can also do a pre and/or post treatment, but that can add up to 2 additional hours, which I have yet to find time for.

7:45am Vibration Platform: I do (2) 10 minute sessions totaling 20 minutes, but I do some Lymphatic Yoga posses and stretching before and after, so lets call this 30 minutes. I purchased the Vibra Pro in 2014 after an FDRS Conference Vendor showed us how it could help our condition.

8:15am Percussion Massager: I do 5 minutes on each lower leg with my Wahl Massager, I really wanted the Hypervolt, but it was priced out of my budget; I start with some reflexology between my big and second toe. This is to try to break up fibrotic tissue. I also apply Lymphoderm Lotion to my lower legs after the massage, in an effort to keep them healthy and free from any Lymphedema complications like wounds or worse case scenario, Cellulitis. Let's call this 15 minutes.

8:30am Get Dressed: This is pretty self explanatory, but I have to first put on my Juzo Dynamic graduated compression, luckily I have been doing for years, so I've gotten pretty quick with it. But it can be challenging to get on; I had to make the decision to wear knee high garments for everyday, the full legging style I could not keep up, so I need more practice with doing so, but that will add in a fair amount of time to your day. Let's not forget I have to do my makeup and hair, that can sometimes get shortened if I'm running behind.

8:45am Leave for work: I am lucky in that I live 5 minutes away from work, and during the social distancing requirements I can do more self care before starting my work day at 9am.

9-3:00pm Working: This is typically my work schedule whether in the office or working from home. When in the office, I live in a beautiful town and have a nice walk into/out of my office, and a huge flight of stairs that helps keep my active during the day. 

While at home I am thankful to have a dog that needs to go out regularly, and I have setup some at home movement options. Like a Rebounder (mini trampoline), a medicine ball for some slam ball in the breezeway, and recently a stationary bike that I can do a few minutes on.

3:00pm Dog Care: Whether I'm working and home by 3:30pm or working from home, she knows when it is her time. A fun time playing in the backyard, throwing the ball, that she doesn't retrieve, but instead makes me chase her around the yard (think she and my husband, who is also my coach, have a game plan to keep me as active as possible). Then feeding her and cleaning the kitchen/dining room. Luckily the cat seeks me out when she needs love, and my daughter takes care of her needs (liter, food, water, as all are in the basement, and it is difficult for me to do the basement stairs, they are narrow and the backs of my lower legs hit the steps as I go down, which is incredibly painful).

4:00pm Workout, Art, Read: We also have battle ropes, which I found I can attach to the garage door and get an excellent workout in, or do an At Home CrossFit workout, or dance around the kitchen listening to music (all movement is good movement). I love art and watch lots of art shows, learning new techniques, and sometimes even making something, or reading (I started a book club to help deal with the emotional side of the pandemic) It is called The Flu Fighters Book Club (see what I did there), and I have regained my love of reading, what a great escape during this social distancing time.

I also have a teenager at home, and spending as much time with her as possible is high on my list, so adjust all the above for that.

6:30pm is typically Dinner: I am super blessed that my husband loves to cook, and he is the maker of of our dinner. We sit at the table as a family every night and catch up and enjoy a nutritious meal together. Typically watching Bob's Burgers, Trevor Noah, Life Uncontained, or some interesting YouTube video our teenager wants to share with us.

8:30pm back to the start: I am getting ready for bed, or should I say round 2 of the pneumatic pumping. It is harder to do at night, when trying to spend time with your family, but don't want it to go too late so that you are keeping your husband up. You have to wear loose fitting clothing, so no compression, and socks, which I had to borrow from my husband, as when you wear compression you have little need of socks, so another component of pumping is changing your wardrobe before and after. It is not a huge deal, but it adds time, and when you just want to go to sleep it can become overwhelming.

Now all that being a typical day, I also like to try to get in some dry brushing, cupping, more stretching, reiki, etc. So any additional self care that my condition needs is on an as-time-permits basis, and on the days I am able to squeeze a shower in, something else has to be adjusted (aka, omitted). So regular self care is often a balancing act.

10:00pm Sleep: If I'm lucky I can get to bed by 10pm to try for that 8 hours of sleep, which is really important when you are battling a chronic illness like Lipedema. I usually read a little and hopefully fall asleep by 11, not quite the 8 hours, but typical of what occurs. I take vitamin D as prescribed by my doctor and do so before bed on an empty stomach.

The thing about Lipedema, is it zaps your energy normally, just living with the extra weight in your body, trying to go about your regular day (not to mention all the self care involved); then the added Lymphedema I have means I also have the toxins that do not get flushed out of my body like a healthy lymphatic system can do, so that also causes you to feel tired. But I am lucky, I don't have the restless leg symptoms others with Lipedema have, so they are constantly tired and trying to manage this self care diagnosis (which means we are responsible for the care and treatments we receive).

Lipedema is a chronic and progressive condition. There is currently no cure. The sooner you can get diagnosed the better, as treatments work better on earlier stages, and you can do all you can to not progress to later stages. So I spread awareness as much as I can so nobody has to be diagnosed late stage Lipolymphedema like I was.

For more info: www.facebook.com/LipedemaFitness

June is Lipedema Awareness Month

June has always been a special month for me. For one it is my birthday month (yes I celebrate all month long), and two, it is LIPEDEMA AWARENESS MONTH!

What is Lipedema you ask?

Well, initially we were told that it was a painful fat disorder that was first diagnosed in 1940 at the Mayo Clinic. If you google the word I am happy to say you will now find lots of information about it, but that was not always the case.

I was diagnosed in 2007, and at the time little was known, there were no support groups, and very little was known. Today it is more widely known and there are lots of webpages, instagram accounts, and Facebook support groups that you can join to find others just like you.

I believe last year was the first time I heard Lipedema was considered a connective tissue disorder. I'm still investigating that, but it makes a lot of sense.

https://www.lipedema.org/ is one of the websites that will give you a lot of information, and they even have a brochure you can print out to read and/or share. Some of us bring them to our doctor appointments, as most doctors sadly still do not know what Lipedema is, or how to treat it.

During the month of June I will do my best to spread awareness. I do it to reach as many people as I can who might have the condition and not know they do, or what it is, or what they can do. I also do it to help shine a light on the need for medical professionals to get more training (it is said they get less than 15 minutes of instruction on the lymphatic system, let alone Lipedema during their schooling to become a doctor). 

If you have questions, ask in the comments and I'll do my best to answer all your questions, and post more information that might help answer your questions, and let you know what you can do if you feel you might have Lipedema.

Know you are not alone, and that we have a voice through social media to make real changes like we have seen over the past several years.

You should also know that there are companies out there that care a great deal, and they come up with products like graduated medical compression (I am a brand ambassador for Juzo), and pnematic pumps to help move lymphatic fluid.

I recently was contacted by Medical Solutions Supplier, a pnematic compression pump distributor of Lympha Press, who was interested in interviewing me for a LE&RN article. I was interviewed by Brenda Viola and she liked our interview video so much, she asked if she could share it as part of June Lipedema Awareness.

Here is that video, thank you Brenda and Medical Solutions Supplier for helping us spread the word, and get others diagnosed sooner, and able to get started on a treatment plan!

https://m.youtube.com/watch?utm_medium=social&utm_content=129729799&v=2TONY2N_evo&utm_source=facebook&hss_channel=fbp-105105619570890

AGILITY FOR OUR MOBILITY: It’ Is Time To Start Thinking Outside The Box

AGILITY FOR OUR MOBILITY: It is time to start thinking outside the box.

Agility is the ability to quickly change the position of the body with speed and accuracy.  It involves turning, moving our legs (and arms) and the ability to pivot quickly.

Typically agility is discussed in relation to sports athletes training, football tire drills always come to mind for me.

So how does that relate to those with Lipedema?

Because improving our agility will help a great deal with falling, something we are prone to do as we advance to later stages of Lipedema. 

Improving our agility can turn a fall into a stumble that we are able to recover from, and stop the fall from happening.

Issues of balance are amplified due to the heaviness and shape of our legs, and they contribute to our gait issues. So any small crack in the pavement, a tree root, a child’s toy, etc. can cause us to stumble, and without better agility, that stumble can turn into a nasty fall.

Coach said something that struck a chord with me the other day, agility training doesn’t have to be all tire drills, and super fast paced; it is picking a spot on the floor and trying to step there, so we build up our ability to place our foot where we want to when we need to (like when we stumble). A great at home option is drawing an agility ladder on your driveway with chalk, or using painters tape. I used 18” squares, and yes, I’m a bit anal so I got out the ruler 🤣 but you can use tiles on the kitchen floor and practice putting your feet where you want them to go.

Here are a couple pictures of how a tire drill can be done using a homemade agility ladder. It can be done using one square, or as you get familiar with the in and out movement, you can move up to the next box, then the next, and even try doing it backwards when you need a more challenging movement. 

 

This is just one option, there are so many others. Remember to stay mindful, pick a spot where you want to put your foot and try putting it there

Under Pressure: Water Pressure vs. Compression Garments

One of the most important self care items for treating Lipedema is wearing graduated compression. Your stage of Lipedema will dictate the level of compression you need, which is measured in Millimetres of Mercury (or mmHg). 

For example, I was diagnosed with stage 3 primary Lipedema and secondary Lymphedema (also known as Lipolymphedema). The level of compression I am prescribed is 30-40mmHg.

This means greater pressure (40mmHg) is at the ankle, and as it goes up my leg it gradually lessons in pressure (30mmHg). The reason is to help move the lymph fluid up my leg, because at my stage my lymphatics are compromised, and without the graduated compression my legs would fill up with fluid.

One of the most beneficial activities we can do to help our condition, is aqua fitness. One of the reasons it is so beneficial is because the water acts like natural graduated compression (the deeper the water the more pressure).

Which had me wondering how the water pressure compared to the compression of our garments.

I have tried googling this for the past couple years, I have asked at the pool, and while everyone knew it was good for us, nobody talked about the actual numbers.

Last week I was watching a presentation, and the presenter mentioned being in 3 feet of water was the equivalent of wearing 70 grade compression. Aha! It got me thinking again about finding some answers.

While I could not find a direct water to compression comparison, I could find water pressure to PSI (pound-force per square inch), and I could find PSI to mmHg.

So drum roll please, here is what I found...

There are many converters online, I checked out a few to make sure the numbers added up, but if you want to get more technical, here you go, courtesy of https://www.sensorsone.com/mmhg-millimetres-mercury-0-deg-c-pressure-unit/...

• 1 PSI = 6,894.76 pascals (Pa)
• 1 mmHg = 133.322 pascals (Pa)
• psi value x 6,894.76 Pa = mmHg value x 133.322 Pa
• psi value = mmHg value / 51.7149

Social Distancing and Loss of Self

It is hard to believe that we are in the middle of week five of social distancing, due to Covid-19, and no real end is currently known. BUT PLEASE DO NOT GIVE UP - we are staying home to do our part, so the healthcare workers can do all they can do to take care of those infected.

Our healthcare workers are literal heroes! A huge thank you to you all!

Social distancing is working, we are seeing the effects, lives are being spared, so take a moment and realize that you are part of the solution because you are practicing social distancing. That is not a trivial thing, so thank you!

While we are doing our part, it is also critical to recognize that because of social distancing, we are "experiencing a traumatic loss of self." (click the link to check out a great article on Psychology Today by David Braucher, Ph.D.

Our normal schedules, our typical daily routines, have come to an abrupt end, and due to that huge and swift change, we are feeling a great loss of who we are.

So what do we do?

Just like needing to come up workarounds for at home workouts, we need to come up with workarounds to find ourselves and experience those things we are missing.

The first step - get back to your normal routine.

What was your typical day like before social distancing? How can you be creative to come up with ways to get as close to a normal day at home?

It won't be exactly the same, but it will definitely help. And by doing so, you will be creating new routines, and feeling proactive in seeking out critical self care. You know I'm a huge fan of fighting back against Lipedema, against that which makes us feel like a victim, and this is very similar to what we are feeling now with social distancing.

Here are some ideas...

Socializing (online of course) but set up a time to call a friend, actually talk to them, hear their voice, or face time them (my sister reached out to me via our Portals last week and it was just what I needed). Some are setting up zoom socials and having multiple friends online, we even held a smallish one with some of the Lipedema Fitness members, think it is time to schedule another one.

Mimic your normal routine - have a favorite coffee you would grab on the way into work? Try to order it online and make it at home. If you miss your gym and those after work classes? See if they have some online classes you can join, or videos of your favorite trainers doing a class you can follow along whenever you are able to. You will be surprised by what it means just to see their face and be reminded why you took their class in the first place. 

Get take out from a favorite restaurant - this not only helps you emotionally, it really helps your favorite restaurants survive, lots of them offer curbside pickup! Miss meeting up with your favorite person over a meal there? Both of you get takeout, facetime, and eat together.

The biggest take away from this is be gentle on yourself,

you are doing an amazing job. 

If you need help and don't know what to do, reach out - get on Facebook or Instagram and message someone, tell them you are struggling and see if there is a time they can connect with you. If not, try a few more, and if still not finding help, please try contacting the Disaster Distress Helpline (1-800-985-5990 or text TalkWithUs to 66746).