Monday, May 13, 2019

4th Annual Lipedema Triathlon


June 29 will be our 4TH ANNUAL LIPEDEMA TRIATHLON, and I am happy to report that the Saratoga Springs YMCA once again is hosting us locally for our event, and the company that manufactures my compression (Juzo) is sponsoring us! But you don't have to live in Saratoga Springs to take part, it is a virtual race, and can be done anywhere!

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 29:

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 month of June. 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-lipedema3

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, May 2, 2019

Flying with Lipedema & Lymphedema - Part II

Juzo Advocates with Annerose (President) & Petra (VP) 
In March my family and I flew to New Orleans for the 2019 Power Symposium conference, where I was part of a Juzo panel of advocates, and talked about what it is like to live with Lipedema, and how compression plays a big part of my ability to keep moving and living my best life.

In my Flying with Lipedema & Lymphedema - Part I post I talked about the research I had done to get prepared to fly (it had been almost 20 years since the last time I flew), and that research was incredibly helpful, and the advice given in the flying groups I joined, and in the Lipedema Fitness group, were key to my feeling I could do it.

Like all new movements coach wants me to do in our WODs (workouts of the day), wrapping my head around the movement is always the first step. Initially my brain is like YOU WANT ME TO DO WHAT? Then we break down the movement, I slow down the movement, I try the movement, and usually I am able to do the movement. The initial shock might always be there, but so is the desire to try new things.

Flying is no different. The research I did beforehand enabled me to wrap my head around the experience of flying; knowing what to expect, and having inside information from others who had gone before me, enabled me to let go of some of the stress, and fears, associated with getting my body to my destination (and back).

Here is how my experience flying went down (and up)...

First things first, Compression. Wearing compression is even more important when flying, because the cabin pressure decreases as we rise, so our blood and lymph circulation slows down even more, making compression garments vital.

I was compressed everywhere, except my head and hands, and I chose to wear my workout clothing over my compression, as it helped me to feel comfortable and able to move about pretty well - another reason to be thankful for all the WODs we have done. Not only did the workouts make my body stronger and more mobile, they also taught me how to wear full body compression and still be able to move my body in all manners. If I can be fully compressed and get up and down off the ground, flip tractor tires, even do Turkish get-ups (a recent movement coach had me scratching my head over), I was sure I could get on and off a plane.

Our flight was at 5:50am, and being there 2.5 hours early made no sense, as Southwest didn't even open until 4am, and our airport is small; so we planned our commute to the airport to arrive right around 4-4:30am, which meant waking up at 2:15am for me, which gave me time to use my vibration machine, get all my compression on, and finish up with any last minute packing.

To my surprise, the airport was buzzing, many travelers checking in, and our first introduction to Southwest, was a great one. I mentioned I would be utilizing the COS (customer of size) policy to the woman at the front desk, and that I had purchased two tickets. She smiled, checked our luggage in, and printed out our boarding passes, explaining that I would use the second boarding pass to reserve the extra seat, it says "seat reserved" right on the ticket.

We left the desk and headed to TSA (Transportation Security Administration), which is literally the gate keepers (you must go through TSA to get to your gate). This is the reasoning behind the arriving 2+ hours before your flight.

There was a line, even at 4:30am, but it moved pretty quickly. They announced that we should have our boarding passes and IDs out. Your boarding pass gets scanned and your ID checked, before you move to a conveyor belt with bins next to it. I noticed everyone putting personal items in the bins (iPads, anything metal, jewelry, any liquids - this is where my research did not fully let me know something, you can bring any liquid 3oz and under in your carry on, but be prepared to pull out all those containers during the TSA check, no liquids can stay in your bag during the check, they must be put in the open bins). This took some time, as I had a fair amount of them, and slowed down the process a bit, which is not what you want to do. I made sure on my return flight that all those 3oz bottles were in my checked bag, which was much faster).

Most folks were asked to go through the metal detectors, but they asked me to go through the full body scanner, where there are footprints for you to stand on, and you are asked to raise your hands over your head. As suspected (based on my research) I was then asked to move over and a female TSA agent told me she was going to pat me down from mid thighs to toes, and asked if I had any pain before she proceeded. I told her I have Lipedema and Lymphedema, but a pat down with open palms should not cause me additional pain, she was gentle, open hands ran up and down my legs and feet, turning a couple times to get the other side of me. I was glad I wore the workout clothing, and not a long dress.

It was quick and before I knew it, I was heading back to the conveyor belt to gather up my belongings and put my shoes back on - I opted for sneakers, maybe some slip on sneakers for flying would be better next time, but the slip on shoes I own are not as comfortable as my sneakers, and there is a lot of walking and standing when flying. I now know why some choose to ask for a wheelchair. I was grateful all the WODs over the past six years had me able to do all the standing and walking, especially in the Chicago airport (which is huge, so huge they actually have conveyor belts you can stand on, so you don't have to walk as much, but be prepared, the right side is for standing and the left side of the belt is for walking).

Changing planes does not require you to go through TSA again, just once at the beginning of your flight there, and once at the beginning of your flight home.

The first flight had 50 empty seats and no one questioned the empty seat between my daughter and I, but the rest were all packed, literally sold out, and the flight attendant on the second leg of our trip asked me if the seat was reserved, and when I told her yes, she had me slip the boarding pass that said Seat Reserved under the latch that holds the tray table in place on the seat in front of the empty seat. It also has your full name printed on it, so i just folded the name portion to the back. Photos below are from my seat forward and behind me.


Be prepared, people still asked if the seat was taken, especially when a plane was full, and the flight attendants were announcing "the plane is full, no empty seats, sit in the first empty seat you see, there are no reserved seats on the plane." Think I'll write a letter to Southwest about this, you can understand why people don't believe you when you say the seat is reserved, after they just heard otherwise.

Thankfully most looked at the seat reserved ticket and kept moving, but one lady in particular did not like my response, and kept making remarks about my comment (of the seat being reserved) as a "new one to her", and as she stood in line right next to me, and kept loudly saying it over and over again, I finally turned around, looked her in the eye, and said "I paid for two tickets, that is why the seat is empty." That was enough to finally quiet her concerns.

Southwest does not require you to purchase two seats, but it ensures you get two seats, and after this experience I will always buy two seats.  Southwest refunds the purchase price of the 2nd seat, you just call or email after the flight and request it. Even if the plane is sold out, they will refund your purchase.

Purchasing the 2nd seat lets them know of the need for the extra space, so all customers are as comfortable as possible. If the plane sells out, and you don't purchase a 2nd seat, there will need to be someone sitting next to you, and if you are hippy like me, you will need the extra space.

On one of our flights, my husband sat next to someone that should have purchased the 2nd seat, they did not fit into their seat, and took up almost half of his, which meant he had to have half his body in the aisle. I know these seats are narrow, and until the airlines enlarge them, get the 2nd seat, you will be more comfortable, and so will the person sitting next to you.

There was no room on our flights for me to comfortably stand up to stretch, so I did so in my seat, ankle rolls in both directions, flexing and pointing, windshield wiping my feet, etc. Our flights down were 2.5 hours each leg and home was a little shorter; if you are on a longer flight I would highly recommend finding a way to stand up and stretch more. I would hope on longer flights the plane is bigger, and maybe easier to do so.

You are told to drink a lot, as you can get dehydrated while flying (air is dryer at higher altitudes), but it is a double edged sword, as then using the bathroom becomes more needed, and I didn't even attempt that after hearing other Lipedema ladies saying it was difficult to fit, and you are fully compressed, so using a rest room is difficult already. I sipped water throughout the flights and seemed OK, but again, my flights were not that long.

The Vibration Machine, my husband insisted we bring, was a lifesaver. We had it in the original box (with Styrofoam) and taped it up really well with a large label on the box with our name/address. It was obvious TSA had to open the box, but they nicely sealed it back up, and thankfully arrived with us (it was with the luggage at baggage pickup). Upon arrival to our hotel room, I took the compression off (although research found leaving it on for a couple hours after the flight was recommended), used the machine, took a nap and was ready for the conference meetings later that evening.

The conference was absolutely amazing! It was really nice to be able to speak in front of Doctors, Therapists, Dealers, and Employees of Juzo. It was even nicer to have one on one conversations with them, and hear how sharing our stories helped them see what it is like for the patients they serve.

There is a lot to do in New Orleans, a little less with a 15 year old daughter and a non drinking husband LOL, but we still managed to have a wonderful time; eating amazing cuisine, like Charbroiled Oysters at Drago's (a must, even if oysters are not your thing, ask for extra bread for dipping in the buttery garlic juice), and District Donuts (amazing coffee and donuts obviously, but those sliders and sandwiches looked amazing, too, next time.)

I am beyond thrilled to have been able to experience this trip, and this travel. Knowing we can do it, opens up the world to us! I hope you get out there and experience everywhere you want to go.

#WhatMovesYou #JuzoCompression #POWER2019 

Saturday, April 27, 2019

Lipedema Fitness: Burpee MODs

Burpee mods, this functional movement is all about getting down on the ground and back up again. Three options shown below...




Tuesday, April 9, 2019

Thank You Kathy Bates!

I just had the absolute pleasure of watching Kathy Bates (yes, THE Kathy Bates, Award winning Kathy Bates) testify before the Congressional Sub-Committee on Labor, Health and Human Services, Education and Related Agencies.

Kathy is the LE&RN (Lymphatic Education & Research Network) national spokesperson and she shared her personal story about surviving ovarian cancer, only to then be left with an incurable condition (Lymphedema).

Lymphedema is a secondary condition I have in common with Ms. Bates, and a condition that later stages of Lipedema patients all have in common with her.

I was in tears as I watched Ms. Bates greet the Sub-Committee, graciously thank them for the opportunity to speak before them, and then proceed to remove her jacket, revealing her stark black compression sleeves, as she announced, "I have Lymphedema."

This struck me as such a powerful performance. An Oscar worthy performance (yes, I went there). In a world so focused on appearance, a world especially critical of our actors, musicians, artists, and the like, here was this Hollywood Icon brandishing her compression sleeves like the fierce warrior that she is.

Ms. Bates shared personal information about surviving ovarian cancer, to then be told about this incurable disease, due to her surgeons needing to remove lymph nodes from her armpits in her fight against the cancer.

She talked about how over 10 million Americans suffer with Lymphedema, some with similar experiences to hers, the result of the efforts to cure their cancers.

She talked about some being born with Lymphedema, like a young girl named Emma Detlefsen, who  was born with Lymphedema in both legs, and who inspired Ms. Bates when she told her at a LE&RN fundraising walk across the Brooklyn Bridge, that she hoped "if she could do something hard for her, like walking back and forth across the Brooklyn bridge, maybe a smart doctor could do something hard for them, and find a cure for Lymphedema."

Ms. Bates stated those 10 million Americans suffering with Lymphedema and lymphatic diseases, are more than those suffering with MS, ALS, AIDS, Muscular Distrophy and Parkinson's disease - combined.

She explained there was no cure in sight, no approved drug therapies, and only 3 studies world wide seeking new treatments. She told the committee that the condition was misunderstood and misdiagnosed, and many suffer silently for years without the benefit of knowing what they have, while their condition gets worse.

The information Ms. Bates shared was mind blowing, 10 million Americans! But let me take a moment to mention, as this is a Lipedema blog, as mind blowing as that number is, Lipedema affects more than 16 million Americans, and it is even more challenging to find knowledgeable medical professionals.

Lymphedema (and Lipedema) can make you feel all alone, different from those you see around you. To quote Ms. Bates in one of my all time favorite movies (P.S. I love you), "So now, all alone or not, you gotta walk ahead.... Thing to remember is, if we're all alone, then we're all together in that, too."

We have to walk ahead, show this world what we are made of, show them we are warriors and we will not go quietly into the night, but we will stand together and fight! We will keep fighting until we are heard, research is done, better treatments are found and cures are discovered.

Here is the link to the youtube video (Ms. Bates goes on about the 2 hour 11 minute mark). Well worth the watch! Thank you to the Sub-Committee for hearing her, and all the others, who testified today.

P.S. - We Love You Kathy Bates.

Wednesday, March 13, 2019

Flying with Lipedema & Lymphedema

The last time I flew was maybe 2001. My husband and I flew to Florida to attend his uncle's wedding, and to visit with my father and step-mother in Georgia.

Nothing stuck out during the travel for this trip that would keep me from wanting to fly again, I even remember a small child on the plane going "weeeeee" as we took off and thought to myself, heck yeah, weeeeeee, what fun indeed!

Flash forward almost 20 years, and I have an opportunity that requires I fly. A wonderful opportunity, that includes my travel expenses being paid for, so how can I turn this down? Answer, I can't.

My family and I will be traveling to New Orleans in a week (in fact I'll be in the air this time next week), for the 2019 Power Symposium Wellness, Education, and Renewal conference, where I will be presenting as part of a Juzo panel of advocates. We will be sharing our individual stories on how we live with our conditions, and how we fight to keep on moving and living our best lives.

Juzo is a manufacturer of compression, and they reached out to me over the summer, wanting to do more for Lipedema advocacy groups, especially ones like mine, where fitness and moving are key. Their motto is freedom in motion, I really like that, especially since I could not do what I do fitness wise, without my compression, and surprising to them, I have been wearing their compression since being diagnosed.

There are physical concerns that come up with flying for someone with Lipedema and Lymphedema, but that will be addressed later. For me the biggest initial concern was an emotional one, and it is one that is still hard to write about today. Will I fit? Will I be humiliated? Will I be subjected to hatred?

So what was my first step in this scary new flying adventure? I did what I always do with new adventures, research.

For me, having an understanding of what to expect goes a long way, even if it doesn't quite happen the way my research might indicate it will, I feel less stress with some education about what typically happens.

I did a quick google search about flying at my size, and I found there are FaceBook groups that are just for this exact need, the one I used is called Flying While Fat. It is a closed group on FaceBook, with almost 9,000 amazing, experienced, members. I joined and posted a question about my specific trip and my concerns, and I got amazing feedback! I also found a wonderful website called Seat Guru, that has seating maps for all the planes, with great customer feedback about what seats to choose, and even photos of their last flight in said seat.

Bottom line: for my trip, Southwest was going to be the best airline. They have the best Customer of Size policy, and they will reimburse you quickly if you opt to purchase a second seat. I chose to purchase the second seat, there is no guarantee one will be available, although a lot of folks on the flying while fat group indicated they choose to not pre-purchase the second seat, and as long as it is not a sold out flight, they are given a second seat when they mention the COS policy upon check in. For me, having the reassurance that I had paid for the extra seat went a long way in my emotional comfort. One less thing out of my control.

People of size are not made to feel welcome in many public places, and airplanes are no exception. Did you know the average seat on an airplane has not only gotten narrower, but the leg room (or pitch) has also been reduced over the years. The seat width has gone from about 19-20" down to 15.5-17", and the pitch has gone from about 32-36" down to 29-32". The pitch is measured from one point on a seat to the same point on the seat in front of it, and doesn't take into it's calculations, the thickness of the seat in front, which will take away from your actual legroom.

Lipedema makes fitting into these airline seats even harder, as we tend to carry a lot of our mass in our hips, and our bums. So getting a second seat is mandatory at my stage.

The other advice I was given from the Flying While Fat and Lipedema Fitness groups:

  1. Show up at least 2 hours before your flight, 2.5 hrs. if you need a wheelchair. Some said they do not use a wheelchair typically, but the long lines and limited seating (airport chairs tend to have arms that don't move) make getting the wheelchair in the airport a necessity for some. 
  2. Use curbside check in if possible, it is a lot faster.
  3. Expect to be patted down. The Lipedema fat shows up differently on the ex-ray machines at the airport, and even the metal detectors seem to flag people of size (for warm areas) they will pat you down.
  4. Mention at check-in that you are utilizing their COS policy, and they will let you (and a guest) pre-board before the other fliers, which comes in handy to find a seat you want (as they are not assigned on Southwest). From what I have found out online, all but the front row on Southwest flights have arms that can be raised up. A second seat makes no sense if the arms don't raise up.
  5. I also found out that there are front and rear restrooms on Southwest flights, but most likely I will not be able to fit in them, so I need to plan accordingly. Which can be pretty tricky given they recommend drinking lots of water and wearing all the compression I have - luckily each leg of the flight is only 2.5hrs.
  6. Some choose to purchase their own seat belt extenders online, but the airline does have them, and all said Southwest reps are pretty discreet about handing them out, they also are not liable (insurance wise) if you use your own extender.

My research did a lot to help me figure out how to fit, but the being humiliated and experiencing hatred are yet to be seen, but it is no different than what we experience every day. We never know the situations we will find ourselves in, or the folks we will meet, but letting the fear of those unknown parts of life govern what we do, where we go, and how we live our lives only gets better when we try new things, experience the wonderful things our lives have to offer. Take back the power you give to total strangers, they might just surprise you, and realizing you don't really care what they think opens you up to so much more this world has to offer.

I will keep you posted how I make out. I am hoping I can record some videos or at least grab some photos along the way to help explain my experience flying with Lipedema and Lymphedema. As well as of the conference. I feel so blessed that I get to have this experience and be in front of the manufacturer and vendors of compression and other treatment options, so they can learn more about what it is like to live with these conditions and hopefully make their products even better! 

#WhatMovesYou #JuzoCompression #POWER2019 

Saturday, March 9, 2019

Lipedema Homage to CrossFit 19.3

Saturday WOD at the dojo, homage to CrossFit 19.3

Regular CF warmup followed by (40) 35lb. Olympic bar lunges, (50) 35lb. Bar overhead squats, (50) pike pushups, and (4) lengths of the dojo bear crawls. 

10 minute cutoff. I got to about 1/2 the length of the dojo, which equates to 15 reps, for a total of 155 reps.

Video is 3 reps of each movement.

Prescribed WOD for reference...
For time:
200-ft. dumbbell overhead lunge
50 dumbbell box step-ups
50 strict handstand push-ups
200-ft. handstand walk

50/35lb. dumbbell, 24-in. box 
Time cap: 10 minutes


Saturday, March 2, 2019

Lipedema Homage to CrossFit 19.2

Saturday WOD at the dojo - homage to CrossFit 19.2

Mobilities (so important), followed by Reg. CF warmup, and then our modified version of 19.2

20 minute AMRAP
(25) sit-ups (in place of Rx’d toes to bar)
(50) marching (in place of Rx’d double unders)
(15) 35lb. Bar power snatch overhead squat (in place of Rx’d weighted squat clean)

I was four reps shy of 5 rounds (446 total reps)