Wednesday, September 2, 2020

Food Sensitivity and Lipedema: Week 4 Elimination

And just like that the 4 week elimination of highly and moderately intolerant foods (based on the hair test I took in July) is done.

Basically I ate the same meals from week to week, and lunch was usually some combination of a Ground Chicken Stir Fry. I would saute the chicken in olive oil and various things on my non tolerant list, like: baked potato, onion, jalapeño peppers, bell peppers, kalamata olives, etc. and I would sometimes add Kimchi (huge fan) and more recently found spicy Wholly Guacamole, a great topper (I use as a sour cream substitute)!

Week 2 went very similarly to week 1, I kept my focus on the positives, the things I could eat, especially the things I had not been eating by following a low carb way of eating, things like potatoes and apples.

Week 3 was going along well, but by the middle of it, I was DONE WITH CHICKEN!

Sweet & Sour Chicken
That was my concern from the beginning, I'm not a huge chicken fan, and I was about to crack when my lovely husband pulled out a blast from the past; something he had made me when we were dating, homemade, best I have ever had, Sweet and Sour Chicken

Did you know pineapple is a great source of bromelain, and bromelain is good for reducing inflammation and swelling? Very good when you have Lipedema!

It saved me for real. It was delicious, it brought back amazing memories, and kept me on track with the things I could have.

It gave me the boost I needed, and then the last week went back to being very tolerable.

So what does that mean, when you finish the 4 weeks of elimination? It means you slowly start to add in (one item at a time) from your moderate list and keep track to see if you notice an intolerance. 

Can you guess what my first item was? 

If you said a big juicy steak you would normally have been correct, but I opted instead to try to help out my hubby/chef, and the item I added back in was GARLIC. It just makes cooking easier and opens up more options for meals. And honestly, who wants a steak made without garlic?


So what did I notice?

  • I didn't miss dairy as much as I thought I would - a huge shocker
  • I did miss butter and cheese, but nearly as much as I thought I would
  • I did find myself feeling guilty eating carbs that I had grown used to not eating
  • I did see a 5.6lb. loss, but I hated having to weigh myself every morning
  • I did have more gas (bloating) than eating low carb, didn't love that

I think this was a huge eye opener for me, especially combined with fasting (18:6 - I would eat between 1pm and 7pm); I have learned so much about my body.

Physically and emotionally. I liked feeling empty right before my first meal, I liked being able to feel what drinking a cold glass of water felt like going into my body and how it really cooled me down from the inside. I liked being able to understand food as fuel. That is something coach/hubby has talked about a lot, but something I got a much better understanding of after this experiment.

I might go back to a more low carb way of eating and eliminate those high tolerant foods (so no dairy, etc.) on a more regular basis. As I am curious to see how my body would respond. I have become very interested in experimenting to learn more and more about my body.

Another big change I have seen is a real improvement to my skin texture. I have seen my fibrosis softening, so now I can literally see the Lipedema beads and larger nodules, and realizing I have them in places I didn't realize I had Lipedema; and while I don't think it was because of the elimination way of eating alone, it might have played a part.

I am curious. Curiosity about our bodies is good. I am looking forward to keep learning more about how my body responds to different foods and truly looking at it as fuel for my wonderful Lipedema Body.

Monday, August 10, 2020

Food Sensitivity and Lipedema: Week 1 Elimination

Fresh Mango Salsa
So I am at the beginning of week 2, so let me do a quick recap of how week 1 went.

The biggest surprise so far, I have not killed anyone.

I'm only half joking about that, asking someone to totally flip their way of eating is asking a lot; so if you choose to go this route, be gentle with yourself, and be patient as you try something new.

The second biggest surprise, my husband didn't kill me (he's the chef in our family, and at the same time I mentioned I was going to be switching up my own way of eating, our daughter decided it was a good time to go vegan, too). Yes, my husband is a saint, and one hell of a cook.

As I mentioned last week, my focus was going to be on the things I can eat, and I would start from there. Here are some of my green light foods...

Apple & Peanut Butter
Most Fruits (with the exception of Bananas) seem to be good for me, and I started with an apple and peanut butter for my lunch and so far that has been a life-saver. I love peanut butter but had foregoing it and apples on my prior way of eating. This combo is healthy and satisfying and so far this week I have not had any issues show up, so yay for that!

Most Vegetables (with some exceptions); those exceptions start off as bummers (moderate sensitivity to every type of mushroom, and tomatoes - both I love, and corn, which I like, but haven't eaten due to low carb lifestyle I was following), and end with a pain in my heart (garlic - WHAT??? How does one not use garlic).

Meat - the only meat I can eat, that I like, is Chicken. Chicken was always my least favorite meat, I prefer Beef and pork over it, but I'm making due. A way to help out with only eating one meat is get it in various preparations (grilled breasts or thighs, ground as a burger or in soups, etc.)

I say meat I like, because of course my test results say I can eat almost every fish/seafood out there, with the exception of Shrimp and Prawns. I like lobster and crab, but I like it with BUTTER, something I also cannot have during my elimination WOE. I do like it with fresh lemons, so we are planning a lobster/crab night soon. I wish I liked fish, it would make this a lot easier, but I just don't like the taste, trust me, I've tried.

I'm such a texture person when it comes to food, so finding crunchy, creamy, savory, and spicy, etc. are all super important to my satisfaction.


So what did I actually eat, here are some ideas...

Grilled Chicken, Sweet Potato and Kale Soup with Quinoa (left), and

Ground Chicken Taco Salad (right) with a Fresh Mango Salsa.


When I began to think about Taco Salad (one of the meals our family enjoys most) and how was I going to eliminate Cheese, Salsa and Sour Cream (all on my highly sensitive food list) and still think of it as a Taco Salad? Well thankfully my husband worked his spice game into the normally bland ground chicken, and I reached out to the Lipedema and Food Intolerance Group with a question about ideas for a no tomato salsa option and the words rang out... MANGO Salsa!

It was perfection and so delicious. I chopped up the following and then squeezed the juice from one lime into it and woo hoo was that delicious (would be amazing over grilled fish, too, if that is your thing)...

  • 3 ripe mangoes (we used 1 bag of frozen, as no ripe mangoes to be had) - frozen can save a step, they are pre cut into chunks and was super easy to microwave for a minute at a time until they softened up and then pretty easy to more finely chop them. You could also sub in strawberries, peaches,  pineapple, or even cantaloupe would be tasty.
  • 1 red bell pepper
  • jalapeño pepper - remove everything out of the pepper to keep the flavor more mild, then dice finely
  • 1 red onion (we prefer vidalia so went with that).
  • Cracked black pepper and pink Himalayan sea salt to taste.

The members in that group steered me to many other options I'll be trying, here are some links...

Watermelon Salsa: https://www.gimmesomeoven.com/watermelon-fire-and-ice-salsa/

Pineapple Salsa: https://thrivingonpaleo.com/pineapple-salsa-paleo-whole30-aip/

Creamy Jalapeño Salsa: https://www.mexicoinmykitchen.com/creamy-jalapeno-salsa/


This one is very good with chicken. Try with canned Chipotle and you can use cashew yogurt (notes from one of the members)...

Chipolte Sauce: https://www.laylita.com/recipes/creamy-chipotle-sauce/amp/


Good option when making tamales, enchiladas or chicken for tostadas (another note from a member of the group)...

Guajillo Sauce: https://www.chilipeppermadness.com/recipes/guajillo-sauce/


This one looks like a quick option for a red salsa sub using canned carrots and beets...

Nightshade Free Salsa: http://hewontknowitspaleo.com/recipe-items/nightshade-free-salsa/


So not much else to report, I tried staying focused on the good stuff, and I really am not pulling my hair out trying to not eat the things on my highly and moderately sensitive list. I'll keep updating as I go along.


I did try pasta one night as is on my green light list of foods, but immediately my stomach was not happy with it, has been years since I had pasta, so that will stay out of my way of eating for now.


If you decided to try the hair test, what have you found to be the most challenging?

Tuesday, July 28, 2020

Food Sensitivity and Lipedema: Results are Ready!

Received my Food Sensitivity Report on July 28, that is completed using a state of the art Bioresonence machine, and four strands of your hair (more will be needed if hair is under 1" in length). 

I find this data fascinating, and I am looking forward to my experiment with an elimination diet of the foods listed as ones I am highly and moderately sensitive to.

An elimination diet is for four weeks, and then you start to add in items (one at a time) from your moderate sensitivity list, and see how your body responds to it over the next couple days.

I could choose to focus on all the things I cannot eat, but instead I’m going to focus on all the things I can eat. Make recipes based on those, and start tracking how my body responds over the next four weeks. 

It will be a little weird, as I’ve been low carb and intermittent fasting for a while now, I have not seen results other Lipedema patients have by following that way of eating, and come to find out, my hair test results show I don’t have issues with lots of the foods that are limited (or eliminated) in a low carb way of eating, so it will be an adjustment to try new things I am used to avoiding, and forgo old things I relied on.

My biggest surprise was dairy, the entire category is on my highly sensitive list. I love 🧀 so that will be a challenge, but one I know I can do for four weeks to find out how my body responds.

Some of the things I am hoping for, reduced swelling and reduced pain. I've also heard dairy free can also help with sinus/allergy symptoms, and that is definitely something I suffer from on a regular basis.

When you add in Lipedema, and how different we all seem to present and respond to different treatments (including ways of eating), this could be a very enlightening experiment.

#strongertogether is a code for 30% off on their website right now. My maxi health test (which tested 970 items) was originally $80, but it came down to $56 with the 30% discount. They also offer a smaller mini health test (400 items) for $55 before discount.

I would like to thank Cheryl Scoledge, and her Facebook support group: Lipedema and Food Sensitivities - Take Control of your Lipedema, for the great support and recommendation of this test. Here is a video of Cheryl talking about her experience.

I will be sharing here more as my experiment continues. Off to the store this weekend to stock up on all those yummy options that are on my list of no sensitivity. Wish me luck!

Lipedema: Break the Habit of Negative Self Talk

Sometimes we can say and/or think poorly of ourselves; sometimes internally; sometimes in our homes, when we are the only ones there; sometimes with close family and friends; and sometimes with total strangers; not knowing the damage thinking and saying those negative words can have on ourselves (and on others).

It can be hard to break that habit. 

I get asked often how I changed this behavior. For me it was changing what I saw everyday by following people on Instagram that looked like me, by joining plus size fashion, and plus size fitness groups, who had strict rules about no diet talk, no weight loss talk, absolutely no negative self talk. I never thought about any of them, what I thought about myself. What society had taught me to feel about myself. It took years of re-teaching myself what I found appealing, that all bodies are good bodies. And yes, I still have low days when I need reminders, too.

This morning reading an artist I follow talk about self doubt, not in her body, how she looks, but her artistic talent. She questioned if her making art was worth the sacrifice of time, time she could be doing laundry, etc., she questioned if what she made was worth it. This artist even gets haters on her page trying to shame her for how much paint she uses. Can you believe that? But those thoughts creep in when her guard is down and add to her own self talk about her art, her process.

This comment was amazing. I think it works for negative self talk, too. So I thought I would share it, I love the physical, the active way this person deals with these words that surface.

Saturday, July 25, 2020

Lipedema: Sharing Vulnerability with Your Support Team

My family headed to a local lake for canoeing and relaxation this past weekend, and it was glorious.

Before we left I confided in my husband that I wasn’t sure about going. 

I wasn’t sure I would find a place to feel comfortable, because I knew I was not able to get into the canoe due to my legs progressing this past year as I transitioned through menopause, I was unsure of a place on the shore where I would be able to get out of the direct sun, and I knew an extended time period sitting in my folding chair would cause some leg pain as it cuts into the back of thighs.

The heaviness in my legs matched the heaviness in my heart.

It is sometimes hard to share the vulnerable days. Those of us with Lipedema can feel pretty vulnerable from day to day, and even moment to moment.

Sharing when we do can help take the sting out of it. Can help shed some light for your loved ones so they know what might be going on behind the scenes, and voicing it can help lessen the power it can hold over you. 

Rest days are necessary for everyone, and especially so, for those battling a chronic and progressive illness like Lipedema. 

It’s ok to have vulnerable moments, it’s ok to decide there are not enough spoons today and a rest day means a lay down, get some much needed sleep in.

I was grateful I shared with my husband. I was grateful he shared with me his feelings, and grateful I went and could see this beautiful river up close and personal, and watch my daughter paddle with her best friend on an adventure they are sure to remember always. 

Here is to your rest days! May they be healing, reflective, and bring you peace in whatever way you need ♥️

Thursday, July 16, 2020

Lipedema: You Do You!

What does that mean?

It means each of us with Lipedema can present with different symptoms (Ex. I may have pain to the touch, but you might walk around with constant pain; or I may have lymphatic concerns, but you may not, etc.). 

It also means that we respond differently to treatments, like I might do really well with weight lifting, but you might do better with cardio.



One of the biggest controversies is what way of eating works best for Lipedema.

Guess what? Yep, that is different for each of us, too. 

Just like supplements, surgery, and on and on.

Living with Lipedema becomes about finding what works for you.

So a word of caution, anyone saying their way is the only way, is someone to be cautious of. 

No one thing is good for everyone. Those “if it worked for me, it will work for you” people may mean well, but it is your job to figure that out for yourself.

Sharing what you try and how it works is still the best way to figure out where to begin, and is how we find the common helpers that work for many - like changing the bad advice of we should not be exercising into exercise is good for us!

Keep trying new things, keep sharing what you do/learn about your body. ♥️ we are stronger together.

Saturday, July 11, 2020

Picnic Table WOD

Saturday in the park (we are back baby). Our WOD today was socially distanced and at the dojo, but in the lovely park area outside the dojo.

We started with our regular warmup (3 rounds of 10 each: sit-ups, pushups, squats, Samson stretch and good mornings).

Followed by 10 rounds of 10 wall ball Sit-ups (10lb. Medicine ball); 10 rounds of 5 picnic table deadlifts; and picnic table clean and presses. Swipe to see the movements.

The biggest challenge today was the humidity, it was hard to breathe before we even began. 

Did you know exercising in high temperatures and humidity increases your core body temperature, and in an effort to cool itself, your body sends more blood to circulate through your skin. This leaves less blood for your muscles, which in turn increases your heart rate. (Mayo Clinic).

So go slow, get plenty of fluids so you don’t get dehydrated, and keep an eye on what you notice with your body. 

Working out first thing in the morning and seeking shade can be a big help when working out outside.

With Lipedema we have to be extra careful, especially when we are wearing several layers of compression. So don’t try pushing yourself as hard when heat and humidity are not an issue.

Also, remember if you haven’t been working out like you are used to, due to Covid, you will need some time to build back up to where you were at.

Happy Saturday!

Thursday, July 9, 2020

Lipedema is not Lipidemia

One of the most frustrating parts of having Lipedema is that most doctors still don’t know what it is.

Currently there is no blood test for Lipedema, so chances are if your doctor says “let’s run a blood test” they heard you say Lipidemia (not Lipedema), and think you are concerned about your cholesterol.

It is one of the reasons Europeans say Lipoedema.

To add to the frustration, a lot of doctors stop listening to you, talk over you, can’t see beyond your size, and just start talking gastric bypass surgery (which they also don’t know - bypass surgery will not do anything for Lipedema tissue).

Don’t give up. You can fire your doctor and find one more knowledgeable, or at least one more open to learning more about Lipedema.

UPDATE: Platelet factor 4 is a new breakthrough, so hopefully there will be a blood test for Lipedema soon (probably a couple years from now).

Saturday, June 27, 2020

OFFICIALLY 5th ANNUAL LIPEDEMA TRIATHLON FINISHERS!

Tomorrow we tackle the 5th Annual Lipedema Triathlon! #athome changes it up a bit, no pool, no gym, but we make it work!

750M SWIM: I started the day with a half hour on the rowing machine, in place of my 750M swim, since the YMCA pool was not open due to Covid.

20K BIKE: I rode my stationary bike for the 20K bike portion of the event. Here is my live post right after I finished it...

“ Holy smokes I did the full 20K bike portion! 
In prior triathlons (at the gym) I would average about an hour for the 20K, but I haven’t been training like past years, due to gym closings.

Cardio is my biggest challenge, and I just did a 30 minute row before getting on the new stationary bike I purchased for this event. 

This bike is different than the high end bikes at the gym, but I have been trying to do 5 minutes at a time (about a mile) during the day to stay active.

My goal for today was so 12.4 sessions of 5 minutes, started with the first one, and then stood where I was, stretched out, and tried to keep my stretch to 30 seconds.  Before I knew it I was half way done!

Once I get to the half way point of a workout, I’m usually pretty stubborn and try for one more mile, then one more, etc.

At 11.2 miles my pedal fell off! Literally. Thankfully my road crew (best husband and coach in the world) hops out of the shower and got me back up and running in about 5 minutes!”

5K RUN/WALK: Typically I use the treadmill at the gym, partly so I can hold on, so the #athome version was mowing the lawn! I was exhausted and took a small breather in between the bike and the mow, but coach timed me, I pushed hard and got a half hour in. Not sure the distance, I assume about half a 5K, since it normally takes me about or won in the treadmill.

After the Row

After the Bike

After the Mow


YAY, WE ARE OFFICIALLY 5th ANNUAL LIPEDEMA TRIATHLON FINISHERS! Congrats to all who participate in any way, and to those who helped us spread awareness.


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

This post may contain affiliate links and I may earn a small commission when you click on the links (at no additional cost to you). As an Amazon Affiliate I earn from qualifying purchases. 


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.