Wednesday, July 31, 2019

Lipedema and Body Positivity

Lipedema becomes very disfiguring in later stages, which can make it extremely difficult to “fit in”, and feel good about ourselves. The psychological distress can be overwhelming.

Early on in my diagnosis I felt this way, it was gradual, and got worse and worse as I listened to the advice being given to newly diagnosed, to not exercise, as they thought it would make our condition worse.  Then in 2013, realizing I was already worse by listening to that advice, I began training in CrossFit (with my husband, a CF instructor).

I have gotten a lot stronger, and reclaimed all my mobility that was lost due to following the advice, but the shape of my body has not changed.

So what did change?

I changed. Emotionally, I changed. I began joining plus size fashion and fitness groups, and following body positive (bopo) people on Instagram. I soon realized I really liked seeing folks my size doing sports, working out, moving their bodies, and taking up space in our world.

I began to realize that I would not say anything negative about any of the bodies I saw in these groups, so why was I saying them about myself? And that began to change how I thought about, felt about, and talked about myself. 

I began to thank my body, I began to love my body. I have no control over having Lipedema, but I do have control over how I respond to it, how I live with it, and I’m so thankful my body is such a fighter.

This artwork came about after I shared a video of my lifting a heavy bag during one of our workouts to a body positive fitness group. A group member, Kristen Pednaud  commented on the video with this incredible picture she drew of me. Kristen is such a wonderful artist, I highly recommend checking out her page on Instagram (@kristenpednaud), or her website: www.dobbydoodles.com - she does pet portraits, too!


I was so touched and fell in love with the artwork, I think I look like a character from the movie The Incredibles! I talked to another Lipedema artist friend about this, how moved I was by it all, and she loved it and asked me to be her muse, which started another series, which I will share soon.

Having someone turn you into art is such an honor. Seeing yourself as art, is life changing.

My journey with Lipedema has been an interesting one. Filled with self discovery, and growing self love, and I’m excited to see where it continues to go. I’m not healed, in fact I’m progressing, as Lipedema is a progressive condition, but emotionally I’m healing more and more every day.

Monday, July 1, 2019

We Did It - Finishing the 4th Annual Lipedema Triathlon


On June 29, 2019 my family and I headed out to the Saratoga Regional YMCA to meet up with friends and training mates, to once again take on the Sprint Triathlon event that has been held there for four years running!


The event would begin in the pool, for a 750M swim - which is 15 laps in their Olympic size pool. It was myself in lane 1, Coach/Hubby and Joel in lane 2, Phylise in lane 3, and Amanda (a YMCA member who has joined us every year) in lane 4. My friend Shawn had to go at 6:30am to do his swim, as he had other obligations he had to get to.

The swim took me 26:15 minutes, shaving 1 minute and 15 seconds off last year's time of 27:30.
Typically in a Triathlon the transition between events counts as part of your time, athletes practice transitions just like the physical parts of their events. The transition between the pool and the bike for me is a long one, because as someone with Lipedema and Lymphedema, it is important for me to shower off right after the swim (to get any chemicals off my skin that might cause irritation; and to then get dried off, apply lotion, and then attempt to quickly put on my compression for the next two parts of the challenge, the bike and walk).

I'm not entirely sure when I started the bike, but after adjusting my seat to position 10 (thanks Annie for the help), I began to try to catch up to my friends and family (who didn't have to go through the transition like I had to).

Last year it took me 55:06 minutes. Because I started so late, I didn't have anyone next to me, and so I just put the headphones in and went to town. This year my girl Phylise was next to me (she has been my weekly gym training mate all year), and her lovely Sister Annie came to cheer us all on (all the way from England). 

You can imagine we did a fair amount of talking - and as such my time was 61:38.

The first couple years going over 60 minutes was a big deal, because the gym equipment actually turns itself off after an hour, I guess it feels you have done enough, or maybe it is to make sure others have a turn, but either way I have learned to watch the time and if it looks like I will not finish in under an hour, I let Gen & Beth know (they are the YMCA employees that help out Ilene, the Aquatics Director). They can make sure to write down the distance when the bike hits 60 minutes, then we wait for it to reset itself and I finish off and any amount is added to my time.
On to the final event, the dreadmill (no, that is not a typo); it is not typically my favorite event on a day when that is all I'm doing at the gym, and is most definitely my least favorite at the end of a Triathlon. I try to play mental games to psych myself up for it, and try to warn others I'm least like myself during this part of the event. We will just leave it at that LOL

This year I was in a pretty good place emotionally when I hit the treadmill, I am always so surprised by how quickly I bounce back after the swim and the bike, and last year Joel was smart enough to figure out that if you select the 5K option on the treadmill, it doesn't time out at 60 minutes.

I grabbed a pink lemonade G2 (gaterade drink) and some gaterade chews, and made my way to the treadmill reserved for me, most were still running, so I was not totally alone, and began the countdown from 5K to 4K, at which point I was going to pause the machine and stretch, take a drink and see if I needed a chew.

Within a few minutes I was trying to make my way from 4K down to 3K, when I would do it all again, pause, stretch, take a drink, assess the need for a chew (they are really sweet, so I try to avoid them if I can). Then more friends showed up to cheer us on, and it was good timing, I was so tired and it elevated me up a bit just seeing them.

3K to 2K and 2K to 1K were brutal, I'm not going to lie, I was totally exhausted, but thankfully still no pain (sometimes my ligaments like to act up and cause awful pain - they are loose, which is pretty normal for Lipedema). I did the same pause, stretch, drink at each interval, and then had a great idea for that last 1K...

I would go live with my Lipedema Fitness group! I had not planned this, so unfortunately they had no idea I was going to be popping on (all sweaty and breathing heavily), but none the less, that is exactly what I did and let me tell you, I will be planning on doing that every Triathlon moving forward because it totally saved me. 

Only a few popped on, but their cheering and telling me how they had done (virtual racers in our event) really kept me going, and we literally counted down every part of that last 1K. I finished this year at 76:42 (vs. last year at 75:57).

So the really incredible part about this year? VIRTUAL RACERS!!! We are officially an INTERNATIONAL event, as we had Lipedema ladies all over the world participating virtually. We had a couple from Australia, from Germany, and even the Isle of Man! Plus a bunch of states all across the USA. 

It was what I dreamed about when I started this race four years ago. I wanted to get as many Lipedema ladies as possible participating in any way they wanted to. Some did just the 5K, some just the swim, others did a couple events, and some did all of them! All badass in my book. 

We want everyone who wants to participate to be able to, no matter their ability - they could choose any part, or a modified version of any part and we would be cheering them along with us.

Next year is going to be our 5th Annual International Lipedema Triathlon and we hope to get even more participation. You don't have to be local, you don't have to have Lipedema, anyone can participate and help us spread awareness.

We want others to know what Lipedema is sooner, to be diagnosed sooner, to start treatments sooner, and hopefully prevent advancing to later stages.

In addition to awareness, I created this event to remind others how important it is to stay active, to fight for your mobility. Lipedema is a progressive, debilitating condition that tries to take your mobility, so while the work we do to stay active cannot be seen visually like someone without Lipedema who would see a loss of weight, muscle definition, etc., we do so to stay mobile as long as possible.

Hopefully by slowing down our progression we give the medical world a chance to find better treatments and one day even a cure!

Fight on Lipedema Fitness warriors - we are stronger together!!!

A huge thank you to Juzo USA for sponsoring us this year, and the awesome shirts they provided every participant (local and virtual)! This company has been so amazing to work with, they share our desire to spread awareness, and there is no way I could participate in this event without my Juzo dynamic 30-40 graduated compression knee highs!

As I sat in my car after the Triathlon, tired beyond belief, I caught a glimpse of myself in the review mirror and started to cry a bit. It is always so emotional for me to realize just how far I have come over the past six plus years (since deciding to stop listening to advice that exercise will make my condition worse, and to start taking back my health). I could barely stand for a few seconds, let alone walk. I am humbled every day, and remind myself when the pain might be creeping in that this life is so amazing, our bodies, our spirits are so amazing. Never give up, never surrender!

A special shout out to all who supported us along the way, who donated on behalf of the event to either FDRS or SRYMCA - both very worthy causes.

We had a few friends not able to join us, one welcomed a new granddaughter into their family, one had a medical emergency of a loved one (luckily he is doing better, wear your bicycle helmets folks), and one was sick herself, all were missed, and we hope they know how much we treasure them all!