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