Monday, June 22, 2020

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!

Thursday, June 11, 2020

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.

Thursday, June 4, 2020

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



Monday, June 1, 2020

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!


Monday, May 25, 2020

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

Tuesday, May 19, 2020

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

Wednesday, April 15, 2020

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).

Tuesday, March 31, 2020

At Home: EMOTIONAL HEALING During Covid-19

We are currently in our third week of self quarantine amid the novel Coronavirus. What that means to my family is:
STAY STRONG
Impromptu photo shoot taken
by my daughter at an isolated beach.
  • My daughter is out of school through the middle of April, subject to change. She is a sophomore in High School and is taking part in assignments and occasional online classes, as assigned.
  • I work for a synagogue and am fortunately able to work from home, with an occasional need to go into the office, or to pick up mail at the post office.
  • My husband is considered essential at his office, and has continued to practice as much social distancing as he can while doing so. He is also the primary person to do the shopping.
I have been practicing At Home workouts, to stay as active and as mobile as possible, but the lack of walking to/from my parking spot to work, and the loss of my aqua fitness classes at the YMCA (which closed per instructions from New York State), have meant my legs are more swollen, and thus more painful.

I asked my husband/coach to bring up my rebounder (mini trampoline) last week, and that has really helped and is a good option when access to the pool is not an option. I immediately saw improvement by doing gentle bouncing (where my feet do not leave the surface of the trampoline), and will continue to do five minutes at a time throughout the day. I was reminded that it is also a very good core workout, when I woke up with some pretty sore muscles.

Staying active is great for bodies, and also great for our emotional benefit, too. But what else can we do during this time of crisis in our world? How do we navigate all that is going on, and how do we address the fear that comes up?

Some things that have helped me are:
Surviving Self Quarantine
One Book at at Time
  • Started an online book club on Facebook, called The Flu Fighters, as a way to take my mind off all the news and sadness that we are all experiencing. It is a feel good book club, and we are currently in our first book, Finding Tomorrow. I've never been in a book club, let alone start one, but it has been a great distraction and lots of fun connecting to others looking for similar relief. I used to be an avid book reader, so at the very least it gets me back to a hobby I love.
  • Limit the news I watch, and how often I watch.
  • Keep to a daily schedule, as close to what my schedule was like before Covid-19; meaning I get up at the same time I used to, I keep my same morning routine of using my whole body vibration, stretching, lymphatic yoga, adding in rebounding, taking a shower/washing face & brushing teeth, putting on my compression, and getting dressed and at the Table (where I spend my work from home day) by 9am.
  • Eat as healthy as possible, at the normal times, meaning I get up from the laptop and do a little more rebounding/stretching, while waiting for my lunch to heat up; which is actually, if I'm honest, better than when I work at the office (where I typically sit down at my office desk and work straight through with minimal movement or lunch). I also started drinking more water, which is so important to keep hydrated.
  • Get some fresh air. It is not easy for everyone, some have more restrictive quarantine guidelines
    they have to follow, but if you can open the window and get some fresh air, and maybe some actual sunshine (vitamin D), it will really go a long way. We are lucky in that we can still travel (this might be changing very soon), so a trip to the beach, double checking nobody else is there, and getting out to stretch, maybe get a workout in, helps so much to not feel so isolated. Even a walk to the mailbox gets you outside being active; maybe time to restart the mailbox challenge!
  • Meditate, I start with deep breathing and move into some mediation. Deep breathing is great for moving my lymphatics and helps me with meditation, I can focus on my breathing and try to limit my monkey brain and the distractions that pop up around me whenever I try meditating. I learned from coach everyone has it, the goal is to not let the distractions or thoughts take me out of the stillness. A work in progress, but some great guided meditations online.
  • Help others, I had a friend reach out regarding making medical masks for our local hospital. I cannot tell you what helping does for me. The being proactive, doing something, helping in some small way really goes a long way to our emotional health. Look in your area, there are lots of groups making masks, or maybe see if you can help in other ways. Here is the video we use, we changed it slightly (9x6 pieces of fabric, and 12" elastic pieces). Warning the elastic is really hard to find now, but there are other options, use bias tape and tie behind head, etc. Look around online for ideas. #CoverOurCaregivers #Thankyoucovid19heroes
  • Connect online. Zoom is the app of the day it seems, I had not heard of it before Corona, and now I wish I had gotten stock in it. It is everywhere. It is super easy to use, and they have a free option. You can setup an online meeting, give others the meeting login info, and then you all see each other on your computer screens. Have a catch up session, have a cocktail, do a workout, whatever you are in need of socially, you can do it somewhat on zoom. I'm sure there are other online meeting options, but that is the one that everyone seems to be using. We are even considering having our book club discussions viz zoom once everyone has finished the book! But just connecting in Facebook groups, or on Instagram, and having discussions about things other than the crisis going on all around us can have a big impact on our emotional selves.
  • Play. Our family started playing Wii again, Just Dance for some fun movement, and playing old school video games like Life. Playing cards, or board games, or put together a puzzle. Connect with your family, and if they are not with you physcially, connect with them remotely also. Zoom or Portal (my sister and I have a weekend catchup this weekend, sadly we used the device once before this, but now we are bringing back the Portal!
  • Clean! Anyone else feel like deep spring cleaning is going on a little every day? Seems the more we spend in our homes looking around while waiting for that work email to pop up, the more things we see in need of repair, or cleaning. Yard work, too! Improving the space around you helps us emotionally. Pick some flowers and put them in a nice vase and place on the table you are working at.
  • Make Art! OK, I'm a big art fan, and painting or whatever your style of art, really goes a long way to distracting us from this pandemic. Bring something beautiful into your home, something you made. The process is amazing, and so is the benefit of seeing it every day. I've been taking part in #marchmeetthemaker on instagram, a great hashtag to look through for art and creativity appreciation and ideas.
  • Exercise. You knew that was coming, right? But it is so helpful emotionally. Movement of any kind works. Don't stress out if you don't have the "right" equipment. Your own body is your best equipment. Get back to basics (sit-ups, push-ups, squats, etc.) or kitchen dancing - so much fun! Check out some of the recent posts on making your own weights from recycled items in your house. Even more recycling ideas, what about all the equipment you have purchased over the years? Why not break it out and the laughter alone will be good exercise. I know I have the body blade somewhere in the basement LOL.
Please know you are not alone. This is a scary time for everyone. Seek support groups online, the Lipedema Fitness group is very supportive for fitness but also sharing with others who also have Lipedema, and might be going through the same emotional distress. There are lots of other groups and ideas online, too. 

I hope you are doing well, but if not, please seek help. Call 911, or contact the Disaster Distress Hotline (1-800-985-5990 or text TalkeWithUs to 66746).

Sunday, March 29, 2020

At Home Workout: REBOUNDING

When you are at home and need some workout ideas, look around your house.

If you are anything like me (and the rest of the world), you have purchased a lot of equipment over the years, and now is the time to pull it out.

I purchased the rebound-air mini trampoline more than 10 years ago, and forgot what an amazing piece of equipment this is.

With our gym being shut down due to #covid_19 my legs have begun to swell more than usual (due to my Lipolymphedema, and because I’m not able to get to my aqua fitness class).

Rebounding is a great alternative to aqua fitness for moving your lymphatics! It is also a great option for way more than that.

Did you know rebounding is said to do 50% more for our bodies than running does? And it is gentle on our joints!

Rebounding is great for improving our lymphatic, circulatory, and cardiovascular systems!

Plus, it’s also good for core training, improving balance and bone density, even NASA recommends it for their astronauts!

UPDATE: I reached out to the company who makes my rebounder with a parts question and the rep answered my question and offered a coupon code to friends and family, so enter code REBOUNDAIRFAMILY for $30 off your rebounder purchase through www.rebound-air.com.

What’s in your basement you can pull out to stay active while self quarantining?

Rebounding is great for our health, and it is also FUN!


Here is an experiment I started this week, looking for anything that could help with the swelling; I shared it with my Lipedema Fitness Facebook support group...

REBOUNDING ACTIVATES YOUR LYMPHATICS - A LOT

WHAT I DID:
Gentle Bouncing - Where my feet do not leave the surface of the mini trampoline. And a forward bend and gentle stretching when I came off the trampoline.

HOW LONG I DID IT: 
10 Minutes - I did 2 reps of 5 minutes, once at 12pm, and once at 2pm.

WHAT I NOTICED: 
I felt unsteady, and a little awkward (because I haven’t used it in a couple years); and boy did my legs feel it. Not in a bad way, but because rebounding engages all your muscles, it is a whole body activity. My legs were a little wobbly as I stepped off.

HOW DO I KNOW IT HELPED:
My swelling went down, visibly noticeable this morning, and I had to use the restroom twice during the night (not typical), and once again upon waking (typical). I also had to use more frequently during the day yesterday, and give me a minute because nature calls...

WHAT STAGE AM I:
I’m late stage three Lipedema with secondary Lymphedema, which is referred to as Lipolymphedema.

WHAT DID I WEAR:
I had my graduated compression on, I wear Juzo Dynamic Knee Highs grade 30-40. I had work clothes on, and no shoes, due to working from home, typically I would have had workout clothes on.

The rebounding companies recommend loose fitting clothes and no shoes. But I wear my compression because it is too painful if I don’t. Since our legs are compromised, this will have to be whatever is most comfortable for you. Wearing my compression did not hinder my body’s response.

WHAT EQUIPMENT DO I HAVE:
I purchased the rebound-air trampoline about ten years ago, before my diagnosis, as a way to try to get exercise at home. It was the only option back then to support my weight limit, and it was around $450. They make less expensive ones now, think even my model is less expensive, just make sure to get one for your weight needs.

NOTES:
Rebounding is a great activity, but I highly recommend a stability bar for anyone with balance concerns. I have mine placed next to a large piece of furniture that I can hold on to for stability, but a bar would be better.

Rebounding is a whole body activity (engaging legs, core, bum, etc.) that has been shown to be more effective than running/jogging, while being gentle on your joints. I am not saying you should not run/jog, that is a personal choice, but for me those activities are painful, rebounding is not.

It activates your lymphatic system and your circulatory system and is proving to be one of the best activities we can do, not just Lipedema and Lymphedema bodies, but all bodies for improved fitness and health. Google the benefits of rebounding, it is an impressive piece of equipment.

Think I found my aqua fitness replacement during our self quarantine period, and something I will add even when the pool opens back up again.

Tuesday, March 17, 2020

At Home Workout Ideas: Coronavirus

Our world is in crisis. The Coronavirus began a few months ago in China, and by now most of us are being asked to self quarantine ourselves. The request to do so is for the safety of our community, especially those with compromised immune systems. It is the best way to slow the spread as much as possible so we don't continue to overwhelm the hospitals and care centers.

Over the past couple months (or days in our case here in the USA) our worlds have been turned upside down. Our schools have been closed, kids are online learning, and the places most of us seek out for fitness have also been closed.

So how do we navigate this? How do we stay sane for the next 8 weeks, or longer?

One of the best things we can do is stay active! At home workouts are the new black.

It doesn't have to be complicated, body weight movements are some of the best things you can do, and you don't need any equipment to do so.

Squats, Sit-ups, Push-ups, Pull-ups, etc. are all amazing at keeping our bodies strong. For the past seven years I have been doing the CrossFit warmup, which consists of 3 rounds of 10 each (pull-ups, push-ups, sit-ups, good mornings, overhead squats, and the Samson stretch). It is how I got started training again after my Lipedema diagnosis. I regained my mobility and strength, it truly saved my life.

If you have some dumbbells at home, great! Or look around your recycle bin for some old clothes soap containers. Did you know each of those 2.95 liter bottles weighs about 7lbs. when full of water? You can fill them with sand, too. You might say 7lbs. big deal, but try doing a farmer's walk up and down your hall a few times with them and see what a good workout it can be. Here's a great link to how to do a proper Farmer's Walk.

CrossFit also has an At Home series that is geared towards the elderly, with the tagline of... "The needs of our Olympic athletes and grandparents differ by degree, not kind." It is all about functional movements, and that is pretty personal to each of us. But the videos show great workouts you can do from the comfort of your own home, and they are free, always have been. They also have some recipes to help keep us healthy, too.

Some equipment you might already have at home, or it would be easy to pickup online, a Kettle Bell, or a Medicine ball... both are great to amp up the workouts we can do at home, and they don't take up a lot of space. 

My top 3 med ball movements are:
  1. Wall Ball
  2. Slam Ball
  3. Wall Ball Sit-ups
For now, even though we are under self quarantine, we can still go outside, so get some fresh air and grab your med ball for some outdoor options - let me tell you, slam ball gets out so much built up emotions!

We'll save my favorite med ball movement (Hoover Ball) for the summer, when we can hopefully get back in touch with our friends and training mates and have a great time passing the ball.

Did you know Hoover Ball was invented by the personal trainer of President Hoover? The President was in South America and watched some Navy guys playing a game called Bull-in-the-Ring on the battleship Utah.

Taking a walk might not come to mind, but yesterday we took a drive to the lake, just to get out of the house, and there was not a soul around; so my daughter and I popped out for a quick walk and some much needed fresh air.

It felt amazing, we laughed and forgot about the Coronavirus for a few minutes. Get outside if you can, even just opening a window can help. Remember, the goal is to limit contact with others, but seeking out open space, or popping into the backyard for a bit is good emotionally and also for that much needed vitamin D the sun provides.

One of the wonderful things that I've been noticing are the kind businesses offering free online at home workout options for us, here is a list of some of the ones I've seen pop up, a huge thank you to them all...

Big Fit Girl - Louise Green has been a long time favorite, free month of online classes.
CrossFit - has ALWAYS been free, they post the daily workouts, and people comment with how they did.
CrossFit At Home - as mentioned above.
Down Dog apps - includes apps for Yoga, HIIT, and more.
Headspace - is a meditation app and is free till the end of the year for all healthcare professionals.
Planet Fitness - free to everyone, check out their facebook page for live workouts.
Peloton - offering a free 90 day trial, and it doesn't require you own any Peloton equipment.
YMCA - offering the Stay Health-Y Challenge.

If you know of others, let me know and I'll get them added.

I start my day, like I have for the past seven years, on my vibration machine. Here is a link to an old post I wrote all about it.  I've taken to using the height of my vibration machine for step ups, which you can also do on the first step if you have some stairs at home (and use the railing if you need to).

Then I put on my Juzo Dynamic 30-40 grade compression knee highs (compression lets me stay active and helps my lymph system function better) and add in some rebounding, which can be done on a mini trampoline, or even on a yoga ball, like Dr. Melissa Gallagher enlightened me to. AND, rebounding is a lot of fun!

I highly recommend checking out Dr. Gallagher's youtube channel, Natural Health Resources, she has loads of videos about Lipedema, Lymphedema, nutrition, and lots more!


For Valentines Day, my husband (who is my wonderful coach as well) got me a TRX Go for home! I'm so happy he did. I can do pull-ups and push-ups and so many other options, including this plank move I tried out recently after seeing it posted on their Instagram page, using the TRX Pro at the Dojo where we usually train this time of year - and now I can do all from the comfort of my own home.


I post all my workouts on the public Lipedema Fitness Facebook page, and the public Lipedema Fitness Instagram page, and a lot of workouts you can modify to do from home.

Sunday, March 1, 2020

March Is Lymphedema Awareness Month

March is Lymphedema Awareness Month. Yes, I said LYMPHEDEMA.


Lipedema can also come with secondary Lymphedema, which is called LIPOLYMPHEDEMA, and is exactly what I have.

It is critical to spread awareness of rare diseases, like Lymphedema and Lipedema.
March is Lymphedema Awareness Month!
June is Lipedema Awareness Month!

So this month is even more focused on my Lymphedema, and how treating Lymphedema is primarily the current way to treat Lipedema. It is all about moving and caring for your lymphatic system, which includes exercise, and compression.

March is Lymphedema Awareness month, and one of the best things we can do is aqua fitness!

Why? Because it is a great way to move your lymph!

It is also a lot of fun!

What is your favorite activity for moving your lymph?

Wednesday, February 19, 2020

Be Your Own Editor In Chief: Curate What You Need To See

I have come to realize social media has become our newspaper, and our favorite magazine. 

For better or worse, every time we log in we learn the latest about our world, and I love that I can be Editor in Chief of what I see (at least on Instagram). I curate it every time I search for, like, and follow, someone or something. And when I want, I can also unfollow pages to take away what I don’t want to see any more.

Mine is a mix up of Lipedema, fashion, fitness, art, dance, bopo, music, etc. I see so many bodies that look just like mine doing glorious things, and I LOVE IT! 

It really helps me appreciate my body, my abilities, right now in this very moment.

At the same time I am removing things I don’t want to see. Things that might derail my life plan. Sometimes it is something that I might have felt did suit me, but as I evolve, as I appreciate my body for all it can do, and thus my thoughts can change.

Continually updating what you are interested in, and removing what no longer serves you, really personalizes what you see.

Get creative! Think about anything the peeks your interest, search for it and like, share, follow those pages and posts.

See a comment on a page you like that is interesting, click on the poster of the comment, follow them; see who follows the pages you like and what they post, look to see who the pages you like follow, so many options for finding interesting new content.

As you log in and see things that don’t resonate with you, cut them out. Don’t give them access to your magazine. It’s like going through your favorite magazine, and tearing out the pages you don’t want to see,

What is your #1 most favorite page to follow, and why?

Thursday, February 6, 2020

Lipedema Empowerment - Time to Take Back Your Life

It is 2020, and a whopping 80 years have passed since Lipedema was first diagnosed at the Mayo Clinic, but what have we learned?

One of the most important things I have learned since my diagnosis in 2007, is that I know more about Lipedema than most medical professionals that I will come in contact with, and because of that...


Self Care is where it is at!

Self care ideas include: compression, deep breathing, dry brushing, eating healthy, exercise, MLD (manual lymphatic drainage) massage, pneumatic compression pumps, rebounding (mini trampoline), and vibration.

And there are many others, anything that moves your lymphatic system is good for us! I even went to a gong bath (sound healing meditation) class once, so be creative, find fun ways to move your lymph system!

Self care for a chronic illness can get overwhelming, especially when we do not see typical results for all the effort we put forth in our care.

So while Lipedema continues to try to take over our lives, how can we empower ourselves to take back that control, and live the life we want to live?
  1. Give yourself time. Time to adjust to your diagnosis. Learning about Lipedema brings about many emotions, so give yourself time to go through them as they come up.
  2. Don't dwell in the negative thoughts about your diagnosis. Yes, it is a chronic and progressive condition, but there are things you can do to help.
  3. Take action. Just by taking action and doing something, you already begin to take back control of your life. Pick out a couple treatments you can introduce into your self care routine, and focus on those. As they become part of your lifestyle, try adding in a few more.
  4. Regroup when needed. It is easy to become overwhelmed, so remember it is ok to take a moment, a day, a week, to regroup and maybe play around with some new treatment ideas.
  5. Find support. Especially if you don't have support at home. Social media is a wonderful tool, and there are tons of great support groups, with lots of members who know exactly what you are going through. Remember that we are stronger together. Here is the Lipedema Fitness support group link.
  6. Stay focused. It is easy to become discouraged when we don't see results for the efforts we put forth, but remember there is still a lot of good going on, even though we cannot visually see it. We are getting stronger, we are educating and supporting others, and we are slowing progression.
  7. Avoid negatives. If you are saying negative things about yourself, your appearance, your abilities, etc. you will defeat all the progress you are making, so stop the self jokes about your body and abilities, and focus on the positives in your life, your body and in your abilities. Sometimes that means avoiding people that are negative - negative talk spreads like wild fire and it is contagious, it is OK to let go of negative people. Drama and stress are big triggers that make our condition worse.
  8. Put you first. That is not always easy, but our health requires energy, something Lipedema tries to take away all day, every day, so like they advise on the airplane, put your oxygen mask on first, or you will be no good to anyone else.
  9. Find fun. Our lives are not only about self care, we need fun things in our lives that have nothing to do with caring for our condition. For me it is art. Whatever it is for you, find something that brings you pure joy and do it, even if it means taking a break from self care.
  10. Reflect. Take time to look back at all you have done in caring for your body, it can be forgotten as we are in the grind of it, but when we take a step back and reflect on how far we have come it can refuel us to keep going.

The Oxford English dictionary describes empowerment as... "the process of becoming stronger and more confident, especially in controlling one's life."

Friday, January 24, 2020

Learning to Love Your Lipedema Body

Emotional fitness is a big part of living with Lipedema, some days it can really be a challenge, so today I posted the following in our Facebook support group about learning to love your Lipedema body. It doesn't have to be all or nothing, some days you might feel on top of the world, and the next you are in tears, the support of others just like you helps a lot, and seeking out a support group that meshes with you is the first step. Here is a look at how I personally worked towards loving my body ...

I love British television, no drama, and everyone is nice to each other, The Great British Baking Show started it, but then I found others, like The Great Pottery Throw Down

I recently found it on YouTube, and blew through both seasons, but was excited to learn another season was currently ongoing; episode three just aired on YouTube last night.

I loved the illustration one of the artists did for Episode One (create a breakfast set with coffee press, two coffee cups and saucers and toast holder)... her name is Sampada Gurung, she is an illustrator (she has a series of these lovely illustrations, I want copies of them all), seeing our bodies represented in art lifts my soul so much.

What do you do for an emotional lift?

I found following fashion ladies with bodies that look like mine on Instagram (like Tess Holliday and Mustang Sally Two), and joining body positive fitness groups on Facebook (like Fit Fatties and Big Fit Girl), a huge help in starting to change how I felt about my body. One day the change exploded when a lovely woman in one of the bopo fitness groups commented on a video I had shared, with this super cute illustration of me. It brought me to tears, someone saw me lifting a heavy bag as inspiration to create art. I LOVE ART! And now I WAS ART! She goes by krissyrini on Instagram, and does super cute pet artwork, too. 

Then Kathryn Lynn Hack (an amazing artist friend who also has Lipedema) created art from my image, just about burst my heart with so much love. I ended up purchasing a piece she made as my 50th birthday present to myself, and it hangs on the wall in front of my vibration machine, so I see it every day and it reminds me that we are all beautiful. She is pure joy if you have not had the opportunity to see her work or hear her speak, seek it out. She was a presenter at FDRS a couple years ago, on their YouTube channel. https://youtu.be/Q6GutmAgPuE

That was the tipping point, when my Instagram feed was full of bodies that looked like me, rocking great fashion, and I was actually art inspiration, and loved looking at the creations these gifted artists made, it changed my life in that very moment. It is when I stopped being angry at my body, and started loving it. 

I guess you could say watching kinder, more gentle, television shows helped me to be kinder, and more gentle, with my body. And seeing all sizes be represented in fashion and fitness helped me to see my body as fashionable and fit! What we watch matters. What we allow into our lives matters. 













Thursday, January 16, 2020

Top Fitness Items of 2019

My favorite fitness items purchased, gifted, borrowed, and found last year... and the good news is, I’m still using them all!

BEST PURCHASE = ASICS Sonoma GTX (gortex) winter running sneakers. I tried these in place of boots, since boots are so hard to find when you have Lipedema; they keep my feet dry, no slipping/falling, AND they don’t hurt my ankles!

BEST GIFT = Gonex Sport Dry Wet Separation (aka pool) Bag. Super lightweight, and has one side for wet clothes, suit, flip flops, and one side for anything you want to keep dry (compression, underclothes, makeup bag, etc.). It fits perfectly in the top section of the gym locker, too.

BEST BORROW = TRX Suspension Trainer. Great training tool for all levels of fitness. I like it for standing pull-ups and pushups, and excited to try more ways of strengthening my entire body with it.

BEST FOUND (IN MY OWN CLOSET) = Gaiam Resistance Cord. I won a gym bag full of fitness items at a conference years ago, I had been using the bag as my pool bag up until my gifted one from Coach this year, and one of the items inside the bag was a Gaiam resistance cord (also called resistance tubing) with handles. I can’t tell you how long it sat on the shelf in my closet, but I use it now to help strengthen my hip abductor and adductor muscles in an effort to improve my gait. It can also be used for upper body work.

What are some of your favorite fitness items that you use all the time?
FYI: not sponsored, just my personal POV.