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.

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.

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!

Lipedema Fitness WOD in the Park: 7/14 - Agilities & Box Jump MOD

Our Saturday WOD (workout of the day) started with some stretching and our CrossFit style warmup (3 rounds of 10 each: sit-ups, pushups, squats, samson stretch and good mornings, no pull-up options at the park, so I used the fence to get a good pull stretch for 10 seconds on each arm).

The warm up was followed by agilities (high knees, side step, walking lunges, light jog, Carioca, Tapioca, burst starts, rolling start sprints, sprints, long strides, lateral strides, combo strides, etc.). Coach had some small cones set about 20 yards from each other and we went up and back with each movement, sometimes the movement was doubled up and we did the movement up and back twice.

Things I have to be mindful of when exercising with Lipedema:

• Twisting a knee or ankle, and since there was wet grass (it had recently rained before we arrived at the park), it became necessary to stay very focused. Slow and good form helps to limit injuries.
• My legs are quite heavy due to Lipedema, which makes any cardio movement a pretty big hit physically. Being mindful of hydration and humidity during the workout, and understanding I might require more recovery post workout are key.
• Wearing graduated compression is also key for me, I couldn't do any of the workouts I do without compression supporting my legs (gives something for my muscles to work against) and wearing compression helps support the knees and ankles and and keep the lymph fluid from filling up in my lower legs.

After agilities we worked on box jump progressions on the park benches...

My box jump mod, is a step up. It started with a much lower step and over the past couple years I have progressed to a higher step, in this case the park bench. 

I need some work on bringing up the second leg, it is harder because my body is in a compressed position. 

Mad respect for those who can do full box jumps. Great workout!

Lipedema Fitness WOD: 7/7 - Lipedema Arms

Last Saturday's WOD (workout of the day) was what we call a private (as in private lesson). Our training mates had summer commitments that kept them from joining us in the park, so we headed to our backyard, and coach filled me in on what we would be doing. For those that do not know, coach is also my husband, Bob. Sometimes referred to as Coach/Hubby.

As coach outlined the workout it became clear that for me, it was going to be a Lipedema Arm day. 

In CrossFit there is a named workout called LINDA (or as some have nicknamed it, 3 Bars of Death). As prescribed on the CrossFit website, here are the details...

LINDA

10-9-8-7-6-5-4-3-2-1 reps for time of:

1 1/2 body-weight deadlift

Body-weight bench press

3/4 body-weight clean

Set up three bars and storm through for time.

Even our warmup was amped up today, in addition to our 3 rounds of 10 sit-ups, pushups, and Samson stretches we did 25lb. Single arm kettlebell swings (to replace my usual good mornings), 35lb. Overhead squats (to replace my usual squats), and jumping pull-ups made an appearance, because we have pull-up bars at home, something hard to find at the park these days.

Then came LINDA. I know some pretty amazing women named Linda, so I’m not sure what the namesake of this WOD did to deserve this cussing WOD, but I was sure there would be a nap in my future.

My modified LINDA...

Round 1: (10) 135lb. Deadlifts/95lb. Bench press/55lb. Cleans
Round 2: (9) 115lb DL/95lb. BP/55lb. Cleans
Round 3: (8) 115lb. DL/95lb. BP/55lb. Cleans

You get the picture, round 4 was (7) of each, round 5 was (6) of each, etc. This took about two hours, because coach and I had two bars to work with, and required different weights for each lift, so taking the weights on and off each round slowed us down quite a bit, and added extra lifting moving the weights around.

After we were done coach said he had a “treat” for me. We took the sledge hammer to an old wooden fire pit cover to break it up for use in the fire pit that night. I took some good swings and it was fun to see the movement be used to do actual work, and not just in a workout.

Saturday WOD in the Park - 6/30: Olympic Bars & Prowler

Almost every Saturday for more than five years I have taken part in a CrossFit style workout, led by my husband (a certified CrossFit instructor). I have shared the workout of the day (WOD) with my Lipedema Fitness Facebook support group during that time, and as a way to reach others outside of our group, I'm going to start sharing those WODs here.

A little background on me, CrossFit has changed my life. I was diagnosed in 2007 with Lipedema, and at the time the advice given to the newly diagnosed, was not to exercise, as they thought it would make our condition worse. When you are first diagnosed with Lipedema your first thought is YAY, finally there is an answer! You quickly find out there is no cure, and not really much geared towards Lipedema. For me, a stage 3, they focused on the Lymphedema (a secondary condition to my Lipedema) and the biggest goal for me was not getting worse, so I stopped the gym visits. Fast forward 6 years and I was getting worse anyway, so decided to take my health back and started working out again, and thus began our training. (You can read more about me in the older blog posts).

Our weekly Saturday WOD (workout of the day) last week was in the park. We are fortunate to have a lovely park to workout in, that offers things like racquetball, tennis and basketball courts, a football field with 1/4 mile track around the outside, even a skateboard area. There are also a couple baseball fields, but those are mostly in use by the youth and college clubs.

We started with our regular warmup on the grass (3 rounds of 10 each: sit-ups, pushups, squats, good mornings, and Sampson stretch; then moved on to the racquetball court with our Olympic bars for Olympic lift progression:

• Deadlifts
• SDHP - Sumo Deadlift High Pulls
• Cleans
• Overhead Presses
• Front Squats
• Overhead Squats
• Power Snatches
• Power Snatch Overhead Squats

Coach was glad to see that our technique did not require much tweaking, even though it had been a couple months since we worked with the olympic bars. After ensuring each movement was in proper form we did (10) of each lift.

Even at 9am the temperatures were climbing rapidly up, so it was key to be prepared. I wore a baseball hat (great for the protection under the sun, but also a useful tool when lifting, if you get too close to your face, you hit the brim), brought my electrolyte drink, keeping it cool in the shade of the racquetball wall, and I sought out shade of the nearby trees whenever possible.

After the Olympic lifts, we pulled out the prowler. It is a device Coach made that carries various amounts of weight, and sometimes even our training mates hop in to make it more challenging. Up and down the field with 90lb. in the prowler, first pushing up and back then pulling up and back.

My body responded by needing a nap that day. In the past five years that is one indicator of progression that has been an eye opener. Early on I needed a nap after every workout, now it is occasionally.  Lipedema makes it harder to notice progression, since we don't show it in our bodies (externally to see), you have to get good at noticing other changes, you feel different internally, stronger, etc. and things like needing less modifications to do the workout, needing less naps for recovery, cardio improving, etc. A journal is a good place to keep track of that, or join a group, start a blog, etc. where you document what you did, how it felt, what your recovery was like, etc. I can promise you, you will be surprised by the progression your body makes, subtle changes add up, and noticing changes, improvements in your body feels great.

Mobility Monday

Mobility Monday - You hear me talk a lot about mobilities, coach used to teach a mobilities class on Mondays in our beautiful park, and that is where the "Mobility Monday" title comes from.

It involved a lot of stretching, which can be tricky for some of us, especially those with EDS (Ehlers–Danlos syndrome), because of overly flexible joints that can dislocate easily. I suspect I have a bit of EDS, because I can easily twist an ankle or knee, and have to be mindful during stretching that I don't go too far, which can be super tricky as stretching feels so good to me.

Functional Mobility - What Does It Mean to You???

This got me thinking about functional mobility, and what it takes for us to be able to move about in our lives. Which is different for each of us, some are more active, maybe because our job requires more activity, we have little ones to chase after, or we like participating in activities like going to the gym, etc., and some of us are less active, our job is a desk job, our children are older, or we do not have children, or our bodies are in so much pain that standing, let alone walking, is just too painful.

Five plus years ago I could barely stand, and walking involved getting to/from my desk at work. I would park as close as I could and the walk from the parking lot down the hall to my desk was excruciating, my lower back was where I felt the majority of my pain. I would not get up much during the 8+ hour shift, and then make the painful walk back to my car and repeat the next day. Weekends were spent in my chair with legs elevated, which led to less and less activity, because it just hurt too much to do so.

So how does one start to be more active? For me it began with the CrossFit warmup, modified by my husband to my specific abilities (he is a certified CF coach). I started with a couple push-ups on the kitchen sink, then a couple pull-ups on that same sink, a yoga ball was used to do my sit-ups, the railing on the steps in my breezeway gave support for squats, the wall was used for my Sampson stretches (I was incredibly off balance when I started so using the help of the wall, or railing, was critical), and good mornings - which were the easiest for me, picture bowing, but so good for hip opening/closing.

Eventually I moved up to do 3 sets of 10 reps of each of those movements, and now all our WODs  (workouts of the day) typically start with the same warmup, followed by whatever fun activity Coach has for us that day.

I won't lie, it was hard to begin. It hurt, it made me feel embarrassed, and angry. I think mostly angry for what I had lost. I used that anger to my advantage, it helped fuel my desire to take control back, and not let this condition dictate where my life was going.

I started very slowly, and you know what? That slow progression was impactful. It changed my life. My core got stronger, my body got used to being active again, and it started with a few minutes of activity.

I remember thinking of how far away I was from my ideal fitness, and thinking I would never get there, but pretty quickly I began to notice real changes, I began to notice increased strength, feeling more balanced, more flexible, etc. I began to focus on those changes, those small improvements, and they built up over the past five years. If you would have said I would be doing an annual triathlon every year, I would have said you are nuts. But that is exactly what happened. I am still blown away by that, and in the last leg (the 5K) of my recent Lipedema Triathlon (on June 16), my least favorite part of the triathlon, when all my energy was gone, my strength was weaning, and I had no sure knowledge if I could finish the walk, my coach reminded me of all those doctors, and people "in the know" about Lipedema at the time, telling us to not exercise years ago, as it could make us worse, all those who look at us and don't think we can do this level of activity. THEY DON'T GET TO HAVE A SAY IN MY LIFE, or in your life! I can tell you it fueled me to push through and finish that triathlon!

Fight my friends, fight for it. Your mobility is so key, keep as mobile as you can, for as long as you can, and then fight some more to regain what has been lost. I am here, reach out if you need support, there are almost 2000 other members in our facebook support group, all at various stages and abilities, all fighting along side you, and most importantly cheering you on!

3RD ANNUAL LIPEDEMA TRIATHLON RECAP

June 16th at 9am we began the swim portion of the Third Annual Lipedema Triathlon. The distance was 750M or 15 laps in the 25M pool of the Saratoga Regional YMCA.

This year I had not done much swimming prior to the Triathlon, like I had last year, and I knew I had to pace myself or the excitement of the race would throw my swim off, which can really set you up for an even tougher Tri.

Even without much prior swimming, my time this year was only a few seconds slower than last year, I clocked in at 27:30, and was pretty excited I was only a little over my PR from 2017.

My 2018 Triathlon Times:
Swim = 27:30, Bike = 55:06 (PR - shaved 7 minutes off my best time), and 5K = 75:57 (better than last year, but last year was dealing with a very painful knee). Total duration = 2:38:33 (not counting the time spent in the changing room between the swim and the bike, which is officially counted in a Triathlon).

Returning Finishers:
Bettina, Colleen, Phylise & I

New Finishers:
Amanda, Dan, John & Patty

Duathlon Finishers:
Bob (Swim/BikeX2), Joel (Bike/5K) & Liz (Bike/5K)


THANK YOU!!! I could not do this every year without my coach and husband, our daughter, our training mates, and our family and friends.

SPECIAL THANK YOUS!!! Saratoga Regional YMCA Aquatics Director, Ilene, and staff members Genevieve and Shannon were such great supporters, cheering us on and tracking our progress every step of the way - a huge shout out to them and to the members of the YMCA, who happened to be sharing the space with us as we shouted out mile after mile.

The thing that stuck out for me this year, is how many first time triathletes we have. Most told me they would never have even attempted a triathlon if it were not for the Lipedema Triathlon I created just 3 years ago. To think back to where I was before I started this Lipedema Fitness journey (barely being able to stand, let alone walk) to being a 3 X Triathlon Finisher just blows my mind. I am incredibly grateful my legs have carried me so far. Small steps equal mountains climbed! Never give up.



We were officially
LIPEDEMA TRIATHLON FINISHERS
X 3!!!


CHEERS!!! Looking forward to next year!

Pre-Race Jitters (nerves, anxiety, etc.)

Guess what, it is normal to be nervous before a Triathlon, Marathon, 5K, etc. It does not matter at what level your fitness is, it is human nature, so just breathe and try to relax.

Easier said than done, right? Everyone has their own way to calm down, but there are some things that can go a long way to help the week before your race/event.

1. Remember all the work you have put into training, and be ok with your current level of fitness. Maintain as clean a diet and good hydration as possible, up to your race/event. I would also suggest sticking with foods you are familiar with, and not try that new protein bar, etc. in the event it doesn’t like you so much.
2. Make a list of what items you need with you, pre-pack your bag, ready your water/electrolytes/snacks you will need during the race. For me music is key on the later legs of the Tri, so making sure you have a proper play list to keep you pushing through the harder bits really helps me, and it is fun to review your favorite songs (and sing) when stressed, maybe even get up and dance about the kitchen a bit to let go of some of the anxiety/nerves building up.
3. Remember you can tweak the activities in the event. If you find a portion of the event is causing you pain or concern, you can tweak it. Ex. if you started your swim too fast and got winded (it happens to a lot of people), turn over on your back and either back stroke or do a stroke called the penguin – where you reach above your head and scoop the water down towards your sides with both hands; or if a knee starts to hurt on the run/walk, maybe swap out to the elliptical, which can be less painful to an injured knee. Just know the race is not set in stone, especially the Lipedema Triathlon, which is all about inclusivity – we want as many people as possible to try to do whatever they are comfortable with – it is a community race, no stress, everyone there is thrilled you are there, or online supporting them. A way to assist in calming the nerves of the what ifs, is to come up with some alternative things you can do should you need to adjust your movements.
4. Take a walk, get a massage, play in the pool, do things that help calm you down. Even take a nap (or two or three). Sleep is good when nerves are flaring up. Especially the night before, get a good night’s sleep. Instead of running through the race events in your mind while you can’t fall asleep, think about all the workouts, training, and activities you have been doing to get your body ready for the event. Swinging sledge hammers, flipping tires, taking walks, swimming, etc. Break down each thing you have done, and how it made you feel strong, happy, exhausted, etc. Before you know it going through all those sessions will be just like counting sheep and hopefully you drift off to sleep. But if you cannot fall asleep, try not to stress about it, listen to some music and envision yourself finishing each leg of the Tri. 
5. On the morning of the event, try to stay positive, remember you are badass just for signing up for the race! Have fun, swimming is fun, riding a bike is fun, and running/walking can be fun (did you catch my least favorite there LOL) – but in all honesty, after being nearly immobile five years ago, I find each part is a huge thrill – for my body to be able to do what I’m about to ask of it, is the biggest reward. I remind myself five years ago I couldn’t have swum, biked, or walked these distances. I literally thank my Lipedema legs for all they are letting me experience.

3RD ANNUAL LIPEDEMA TRIATHLON - JUNE 16, 2018

For the last two years we setup and completed the first two Lipedema triathlons, with the help of my training mates, friends and the Saratoga Springs YMCA.

I am happy to say the Saratoga Springs YMCA once again is letting us hold the triathlon at their facility, and once again, they want to open it up to others (outside of Lipedema) that have mobility concerns, I love what the YMCA stands for and how it tries to be inclusive of all body types and mobilities.

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-mile) bike, 5-kilometer (3.1-mile) run/walk. 

Here is a break down of what we will be doing come June 23:

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 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, on your block, in your your favorite 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. 

If you want to do the entire race, but not sure you can complete it in the 9am-1pm timeframe, 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: http://www.signupgenius.com/go/5080448abad2fa57-lipedema2

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!

Body Positive

Did you know the body positive movement has been around since 1997, and there was a fat acceptance movement in the 60’s? I didn’t.  I learned about the movement well after being diagnosed with Lipedema in 2007.

It was actually only a few years ago when I joined a couple body positive support groups on facebook that I really began to understand the movement. One group was for fashion, and the other two were for fitness. All of these groups had one thing in common; they were filled with people like me, posting pictures of themselves in a very loving way.

At the time I just lurked. I wanted to find out where these people shopped. I wanted to see what other bodies my size were doing for fitness.

They had rules, too, no weight loss talk, period. They were perfect as is, in that very moment.

It really got me thinking about my body, my Lipedema body, how I saw it, and how I wanted to see it.

I knew what I did for my body, all the effort I put in to make it as strong and healthy as possible, and I knew if others looked at me, they would have no idea what I did for it, how I cared for it. 

I decided that I had to start showing others what I did, not only to explain what I was doing to my Lipedema Fitness support group members, but also so others could see my body doing fitness.

I had been training with my CrossFit coach and mates in the park for several years, but I started taking pictures and videos of what I was doing and where I was doing it. I posted those pictures and videos on the Lipedema Fitness support group first. Then eventually I started posting them on the body positive support groups, too.

I was blown away by the positive responses. The comments of inspiration and how they were trying the movements and modifications my coach was so good at coming up with.

One day, back in January, a member of one of those body positive fitness groups (Kristen Pednaud) commented on a video I posted (it was of me finally being able to lift a heavy bag from a squat position). Her comment was “OMG you’re a warrior” and then a few moments later she posted this cartoon image (that she drew of me) saying “I hope you don’t mind”.

Mind? It was amazing. I was in tears. 

Others commented on how our interaction with each other made them cry, and how much they would love to see the image (and others like it) on workout t-shirts and in gyms.

I looked at this piece of art she created of me and I felt like one of the Incredibles (no capes). She made me feel incredible. I literally drove around for days thinking someone turned me into a piece of art. She told me I looked like a super hero or a Viking and she had to draw it.

HOW COOL IS THAT!!! I took the video to see my form, to see where I can improve it, to share the movement with others, to show them a visual of what I do, to help explain it, and someone else got inspired to make art. I love that.

Kathryn Lynn Hack is an artist, a fellow Lipedema sister, and one heck of a dancer. She saw a picture I took of my shadow last year and she turned it into art. She took photos that my husband (Bob Cornute) took of me for her class, and she turned them into spectacular pieces of art. Art that I look at, and smile at, and truly love.

Kathryn has a gift. A way of showing us what she sees in us, and the more we see ourselves like others do, the more self-love we will create. You can check out her art on her Etsy page.

I so wish I was going to the FDRS Conference this year, and attending Kathryn’s session (Honoring our Bodies through Art), I cannot wait to see what everyone creates.

In the words of the incredible Peter Gabriel…

     In your eyes, I am complete.