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)


Saturday, February 23, 2019

Lipedema Homage to CrossFit 19.1

Saturday WOD at the dojo: An homage to the CrossFit Open 19.1 workout

Modifications due to location/lack of equipment:
- 10lb medball squat/slams (for Rx’d 14lb. 8ft. Wall ball)
- 35lb. Bar SDHP (sumo deadlift Hugh pulls) for the Rx’d 19 cal row

AMRAP (as many rounds as possible) in 15 minutes.
I was 3 pulls short of 7 rounds (263 reps).


Wednesday, September 5, 2018

I Want To Ride My Bicycle

This weekend the discussion of getting me a bike came up again, I love my husband. Brief background, he is an avid bike rider, rides every day at lunch, great way to break up the day for sure, rides as often as he can, and used to ride a lot more. When we first were dating I had gotten a bike and we even went camping via bicycling to get there/back. it was a lot of work, but fun. My bike was stolen and I hoped it was by someone who rode it more than I did (how sad is that).
Anyway, after the past three years of the triathlon and riding 12+ miles on the stationary bikes in the gym, I have been dreaming about riding one again.
Finding a bike to support someone my size is not easy. There are some, but pricey as all get out. Some have electric abilities you can add (my friend has one and absolutely loves it).
Since I want to make sure I can ride, and will ride, we are making the first option something as low cost as possible.
I found some great articles and posts online from other heavier riders and it has boiled down to a fat tire mountain bike. The good news, something my husband will ride, too.
Mongoose Dolomite - about $220 - $250 online
Mountain bike frames are made for pounding, so even if the weight limit is lower than I am, I am not going to be plowing through the trails and putting it through the typical workout someone like my husband will. So I should be ok doing the track or paved roads, being mindful of potholes, etc.
Last night was the first time I tried to even get on a bike that wasn't the stationary bike at the gym (which before that was mostly likely 20 years since my last bike, you know, the one that was stolen). It was my husband's mountain bike, seat far too high, but I just wanted to see if I could even get my legs on either side (not sit on the seat).
I have pretty good range of motion, to typically swing my leg over the seat, but with his seat up much higher (for him to use) I could not clear the seat. He said I should step over the center bar (also a man's bike so the bar is higher up than a woman's bike), but my step up clearance is minimal - the size, shape and weight of my leg made clearing the bar impossible that way.
Brilliantly he said to lay the bike down on the ground (chain side up so as not to get dirt on the mechanics), and then step over the bike, placing my legs on either side, and then raise the bike back up, off the ground. It worked. I was straddling the bike.
The bar was far too high on me, but he reminded me it would be lower on my bike.
More to come on this journey to a bike and the obstacles that come up - how we get around them, and the ultimate joy of riding a bike again - remember how much fun it was to ride a bike? I do. I cannot wait.

Saturday, July 28, 2018

Lipedema Fitness WOD: 7/28 - Warm Up Gone Bad

Saturday WOD in the park. Mobilities only, because the workout should be called "Warmup Gone Bad".

(45) 1 minute rounds of pushups, situps and squats...
  • Rounds 1-15: (10) push-ups every minute. You think no problem, until you get into the middle rounds.
  • Rounds 16-30: (15) sit-ups every minute. I was finishing the first round of 15 just as round 2 was starting, so had to drop down to (10). I was kipping the sit-ups, and my thighs were burning in the later rounds, always good when the squat rounds are still coming up.
  • Rounds 31-45: (20) squats every minute. Surprisingly my favorite rounds. Had to remind myself to keep the core tight, looking strait ahead and not at the ground kept my back in alignment. Much stretching in the down time.

An older woman (who was killing it on the racquetball court) said “you know the shade is right over there” 🤣 I loved her. Our park is awesome, lots of activities and families out enjoying the space.

MOD option for sit-ups: if doing sit-ups on the ground is not good for you, I have used playground equipment at the park to raise me up, or the incline of a small hill to give me a little lift. Look around, you might be surprised what you can find to help you.

No video, just my post WOD tomato face selfie. Hope you had a good weekend.


Saturday, July 21, 2018

Lipedema Fitness WOD: 7/21 - Wall Ball Situps & Squats

Saturday WOD in the park, regular CrossFit warmup followed by descending/ascending 10lb. Wall ball sit-ups and squats (my mod for double unders).

Round 1: (50) WB situps and (10) squats
Round 2: (40) WBSitups and (20) squats
Round 3: (30) WB Situps and (30) squats
Round 4: (20) WB Situps and (40) squats
round 5: (10) WB Situps and (59) squats



















My time was 23 minutes, squats went unbroken, so another mod might be needed next time. Video taken after I finished the workout, note to self maybe do before or during LOL I was spent and still needed to video.

How Lipedema plays into this workout for me: getting on the ground and back up slows me down, I need to be extra mindful of knees and ankles since they are more easily twisted. Progress since I started training, being able to get on the handball court (and back up) at the park! Woo hoo!