Wednesday, August 3, 2016


June 25th at 9am we began the swim portion of the first ever Lipedema Triathlon. The distance was 750M or 15 laps in the 25M pool of the Saratoga Springs YMCA.

I learned the size of the pool is called a "short course" Olympic pool, which is recognized by FINA (the International Swimming Federation). Not that I thought I would be breaking any swimming records, but I love learning new things.

My coach/hubby, our daughter, our triathlon coach, our training mates, our friends and their significant others, and my best friend growing up, who drove from DC to NY the night before, all met up a little before the race began, and while I was anxious and nervous about what I had not only signed myself up for, but those that stood before me, it all fell away in that moment I saw them - I was blessed. I had all these people in my life that cared about me, that cared about this thing called Lipedema, and who fought just as hard as I to help spread awareness.

I was emotional in that moment, I am emotional here and now typing this, one month later, and it is the reason I didn't write about it sooner. How lucky am I.

Lucky, blessed, and oh so grateful & thankful for those I have standing with me, and those online from all over the world cheering us on as one of our friends shared videos of the ongoing race and read out the comments they typed - which really helped in those moments we needed them most, and brings tears to my eyes as I re-watch the footage now and hear those comments.

OK, enough emotion, lets dive into the recap (ha, see what I did there, "dive" into it). Sorry.

The swim caught me a little by surprise, I was surprised that while I thought my nerves had calmed down, my breathing did not agree. I couldn't seem to catch my breath (which breathing was the number one thing I was working on prior to the event, and is typically the thing most swimmers need to work on), and our twelve-year-old daughter swimming in the lane next to me began to have some issues once she reached the deep end of the pool. But our Aquatics Director, Ilene, came to the rescue and two pool noodles later our girl was swimming like a champ!

My coaches and friends on the shallow end reminding me to breathe, to slow down, and letting me know that the hour and thirty minutes I allotted for each event of the triathlon was going to be blown out of the water (oops, did it again, sorry, pun alert).

It turns out I completed the 15 laps in about 36 minutes, almost an hour quicker than I estimated. I would do the standard front crawl (or my best attempt at it) down and do a move called the penguin back (that the lovely Ilene told me about after a few laps - it is on your back and you reach above your head with both arms and scoop the water down towards your sides). In a triathlon you can do any stroke you like, you really are just trying to have fun, and save your energy for the rest of the race.

With Lipedema I have to wear compression most of the time, if I don't my legs fill up pretty quickly with lymph fluid, which is painful, and heavy, and tight; your legs feel really tight as the skin is stretched to the limits with the expanding fluid.

Imagine having water balloons all over your body, they move separately from the rest of you, and you feel the pull of them. That is what it feels like, like you are encased in big water balloons that move independently from you. You feel the gravitational pull all the time, but when you start moving and they go there own separate way, you really feel the heaviness of the lymph fluid trapped in your body.

Even with compression I get swelling, but it is a lot better than without, I could not have done the triathlon without compression. I wore bioflect micro massaging leggings in the pool. Wearing my bioflect compression in the pool is tricky, because it is not really made for the pool, but it worked really well.

Back to the race, I was now in the changing room trying to get the compression off (compression is not easy to get on and wet compression is even less fun to get off). It rolls and the pressure it puts on my legs as it rolls down really hurts. I took a quick shower to rinse off the chlorine, and then dried off really so I could put on more compression for the rest of the rest, all while my friends spun my suit out and tried to assist me as best they could (all this time in the changing rooms counts towards your final time - the transitions count).

Finally we made our way out to the stationary bikes, which the YMCA had reserved for us. Five bikes all in a row. Our daughter Noelle, our friend Phyllis, me, my bestie Bettina, and our friend Colleen all began the bike event (our friend and training mate Paul and our friend Joel took to the bike trail setup outside the YMCA directly following the pool, so were a good portion done before we began - see transition is so important, but so is compression when you live with Lipedema).

We felt great on the bikes, we were joking and having fun and shouting out the miles as we each reached them. I would have to stand up on the pedals occasionally as my feet (and my bum) would begin to go a bit numb. About an hour and 5 minutes later we would be done with the bike event - which was my biggest unknown going into the race. I had not been on a bike in over ten years, I was fearful my lipedema body would not fit, or the bike would not be able to support me, but it did, and I did, and it was great!

The one thing I learned, about a week prior to the race, is the bike I thought I wanted to use (the Sci Fit) did not work for me. Yes it fit my body, it has lots of adjustments for all body types, but the angle of the pedals (it is a recumbent style bike) hurt my knees, so I opted for the Matrix upright stationary bike and it was perfect - seat set at 10 worked best for me, but play around with your seat to make sure your in the right position.

On to the treadmill. At this point we were all still feeling good, smiles, laughing, incredibly proud for how far we had come already, and then the treadmill. Treadmills have a downside, they can be incredibly boring. My main reason for choosing it though was for the ability to hold on to something as my body tired.

I had been training three times a week for about 1.3 - 1.5 miles on the Matrix treadmill at the Wilton YMCA. It was the event I was most ready for, but just as my 1.5 miles cleared I knew I was in trouble. I had more than 1.5 miles still to go (the distance is a 5K) and I was done physically and emotionally. Or so I thought. A training mate popped in to support us and took one look at me and asked if a cold cloth would be good - YES, I said. She came back with two and I had her give my friend Phylise one as well. It was perfect! I placed it at the back of my neck and it gave me a little boost. I told everyone I had to buckle down, so no more talking for me, headphones on and searching for great songs to push me through to the end of this race.
I'm sorry for what I said
during the Lipedema Triathlon
That is when my iPod decided it had also had enough and kept trying to play a slow Tom Petty song. I love Tom, but this was a slow cool down tune, and I had more mileage to make before I was cooling down. I got a bit cranky at this point and then the treadmill said time to cool down and literally shut off!  WHAT??? I guess it is timed that way, to force you to cool down; it shuts off and I still had about a minute more time I needed. It was fixed, I have very patient friends who knew to put their ear muffs on, and then, we were finally finished!


Tuesday, June 21, 2016


A post in one of my Lipedema Support groups got me reliving a painful time in my life, when I stopped the activities I was doing because they were not working (aka I was not losing weight).

A lot of you know my story, so I won't retell it all, but I was an active person, loved the gym; as an adult I did not see much weight loss, I would ask my doctor what was wrong, as I was working out all the time, eating healthy, etc. IT DID NOT COMPUTE. 

Eating healthy & being active are
suppose to equal a fit body, right?

My Doctor agreed it didn't make sense, she was also a member at my gym, and said she always saw me there. Together we tested everything possible, healthy was always the result.

Then a few years down the road a diagnosis of Lipedema, from a Vodder trained Physical Therapist, had me going back to my Doctor - finally an answer for why my body was the way it was; then nothing you can do, and exercise could make it worse. Not just her saying that, everything we read online said that.

Fear of making myself worse kept me inside, legs up, no gym, as prescribed. It was not the answer for me. My weight increased, and I lost most of my mobility.

That fear is what I'm recalling today. I hate being afraid, I hate the way it makes you feel helpless. Lipedema and what it does to your body, what it does to your mind, is brutal; it tries every moment of every day to make you feel weak and afraid, like a victim.

Fighting back is what saved me,
not only physically, but mentally as well. 

I may never look the way I want to, I may never get the level of fitness I want to have, but I will go down fighting for whatever fitness I can obtain.

Even those first days, those first months of the hardest part of my journey in regaining my mobility (aka the beginning) I started to feel control swinging back to my side. It was small and gradual, but it was real. I could feel my warrior coming out, ready for battle. Those little feelings of hope were what I clung to.

I think for me it is the fighting that keeps me going,
the act of taking action that mentally does the most for me.

What do you do to fight the mental war against Lipedema? How do you feel confident, and take control when it is trying to make you feel powerless and afraid? Whatever it is, do it, and keep doing it!

When my inner voice gets loud about the way I'm breathing like I just ran a marathon, but it is only the walk back to my car at the end of my work day, I tell my inner voice to suck it; I remind it how strong I am, how mobile I am, how badass I am, and that I will keep talking it down, pushing back, winning by walking.

By the time I'm done scolding my inner voice I'm at my car and feeling fine.

I have to get visual, see Lipedema for the bully it is and tell myself, not today! Today I fight you, and that is all I focus on, today, that moment.

Hope you win the fight today, and tomorrow, and next week. Stay strong, and know you have thousands of Lipedema women and friends and loved ones backing you up.

Monday, June 13, 2016

Curves Meet Courage Lipedema Conference Summary

Curves Meet Courage Lipedema Conference Summary
Rutgers University in Newark, NJ / June 12, 2016

Bob, Noelle and I were invited by Katia Page to come to her Lipedema Conference, and participate on a panel. If you have not had the pleasure of meeting Katia, let me tell you that she is kind and incredibly caring (and extremely funny), always on the go, fighting to spread awareness of Lipedema, and even created a company called The Lipedema Queen in an effort to raise funds for those patients needing treatment, supplies, etc.

The conference Katia put on was a gathering of Lipedema ladies sharing their personal stories (Amy Jo Blake, Patricia Deckler, Pamela Orlowicz, and Suzanne Pfuhl - all were incredibly moving and made me quite emotional as I related to them all); Surgeons from NYC Surgical Associates speaking towards WAL Liposuction, and the non-surgical treatment of MLD (Manual Lymphatic Drainage); Flexitouch Treatment Specialists talked about what Flexitouch can do in addition to MLD; a Psychiatrist (Dr. Pearl Pfuhl) talked about the emotional side of Living with Lipedema and other chronic illnesses; Coach/hubby and I talked about fitness and fighting for your mobility; a lovely plus size model from Florida (Lejoyea) and an equally lovely plus size enthusiast and author (Tro-Jah Irby-Morgan) talked about loving the body you are in right now, which is so very important.

Just as Lipedema is multi-faceted, so was this conference. I liked that it covered many areas of living with lipedema, and what we do on a daily basis.

Sitting and chatting with fellow lipedema ladies is always a huge plus at conferences, and hanging with Polly Armour always makes not only myself, but Coach/hubby smile. Meeting Amy and Suzanne and her mum Pearl were a real treat, too. Looking forward to the next gathering.

I thank Katia and all those supportive folks she had helping her during the conference, you all did good Katia, you all did real good!

June is Lipedema Awareness Month

Saturday, May 28, 2016


My favorite summertime chore is mowing the lawn. Walking, the vibration (which is said to be really good for those with Lipedema), music via headphones, singing and dancing on my lawn for all the neighbors to see (and with new neighbors that should be even more interesting this year).

I'm always reminded how grateful I am to be able to mow the lawn. I'm grateful for every step I take, and at times I still get emotional as I make my way around the lawn and realize how far I have come.

To fully understand the level of gratitude I have for being able to walk again, you must know where I started. Lipedema has a way of making you feel isolated. It starts with feeling like you don't "fit" in. From the basic and literal sense of not fitting into a chair with arms, to the more emotional and figurative sense of not fitting into society because you look differently. Add to that that you start to feel your mobility slipping away, and your legs getting heavier, and you fear how Lipedema will continue to make you feel weaker and weaker.

I was told early on in my diagnosis that Lipedema did not respond to diet and exercise and the best thing I could do was keep my legs elevated (so they didn't fill up with fluid too much (lymphedema), and stay out of the heat as much as possible to keep the inflammation down. I was also told that exercise could make my Lipedema worse. The fear of making my already progressing condition worse kept me listening to this advice for many years.

I sat with legs up and watched my world go on around me. Walking a few feet was painful, as was just standing for a few moments. My husband was like a single parent because I couldn't go to school events, I couldn't go to the fair in the summer, or trick or treating in the fall. My life was work during the week (which was a race from house to car, car to office, office to car, and finally car back to the house every day with the hope I would be able to physically be able to walk the distance between each destination) and recuperation on the weekends (which involved legs elevated and resting most of the time).

Finally I said enough. I had been listening to them say nothing you can do, I had been listening to the fear in my head of making my Lipedema worse, and my Lipedema had been progressing still the same.

It was a long, slow climb back up the mobility ladder, but the best part is that each step up was amazing. I didn't go from barely being able to stand to mowing the lawn. It was gradual, but every new step, every new ability, to stand a little longer, to walk a little further, was so amazing that it kept me going.

It is hard when your goal seems enormous, or unreachable; to plan your attack, to fight back when you feel weak or afraid. But focusing on one step (one rung) at a time can make that an easier journey. And it is not only good advice when you are just starting, when that ladder seems to go on forever, it is good advice when you are in the middle of your journey, too. Because think about it, everyone, everywhere is always somewhere in the middle of their journey.

So if you are out driving one day, and see someone mowing their lawn, with a dance in her step, realize she is in pure joy and filled with so much gratitude that she can do this activity. This "chore" is a gift she is forever grateful for. And know as I stand on the lawn mowing rung of my mobility ladder I wonder what other great rungs are ahead, and I look back often at the rungs I took to get where I am in this moment and I say thank you.

Wednesday, March 30, 2016

Lipedema Triathlon - Phase One (Swim)

The Lipedema Triathlon was created in an effort to spread awareness for Lipedema, and to keep moving and challenging ourselves, because without doing so our mobility is at stake.

June is Lipedma Awareness month, and on June 25 we will be taking on this challenge. If you would like to join us from your hometown, click here to sign up.

We wanted it to be all-inclusive, you can choose your level of involvement (do one lap, one mile, one leg of the race, or the full TRI, whatever your fitness level), and we wanted it to be virtual, so no travel was required, you can do it in your own hometown, or your own backyard or living room.

Triathlon, from the Greek words treis ("three") and athlos ("sport"), is a three sport event, typically swimming, cycling, and running.

Triathlon races vary in distance, the one we are focusing 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 25:

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.

I knew the swim and the bike were the big unknowns for me in this equation, I had not swam laps or ridden a bike since before my daughter was born over 12 years ago. I didn't even know if I could find a bike that I could use, one that would fit me and support me for a 12 mile ride. Not the average concern of a triathlete, but with Lipedema, your hips and legs can be quite a bit wider than most, and the fluid surrounding the lipedema fat cells also make our legs very heavy.

The first step was joining the YMCA, we have two branches in our town, one with a fantastic 25 meter pool.

Getting myself geared up to be seen in my swimsuit was the next step, but with the help of coach/hubby, my daughter and one of my best friends and future swimming buddy, it was easy peasy.

I opted to wear my bioflect micro massaging leggings under my suit, as I knew unlike aqua aerobics, my legs would be more near the surface and not getting the compression the water provides when standing upright in the water. I am not sure how long the bioflect will hold up in the pool, as not specifically made for that, but so far into our fourth week this Sunday, and only minor color fading is noticeable.

The first day back in the pool was exciting and scary, but I had purchased my speedo goggles and Tyr swim cap for long hair, and I was ready to go.

My friend was great, I was so thankful she was there, as she has been swimming laps for years during her lunch hour, and she had great pointers for both coach/hubby and I. While the goal was 10 laps, we did 16. More than half of the duration we would need to do for the TRI.

The second trip to the pool would be with one of my training mates, who is an Ironman (woo hoo)! She had amazing pointers, pinkies up (like when properly drinking tea) would naturally turn your hand to the correct position for cutting into the water, etc. As it turns out, the big challenge for both hubby and myself - breathing.

I started breathing every time my right arm went up and finally realized well into our hour session that I was not exhaling in the water ("you should see bubbles the entire time", she said). Mentally my body was not letting me exhale with my face in the water. So I spent time just gliding, no arms, with face in the water - when I came up they were so excited. Seems when my face is in the water, my legs  are in the perfect position at the top of the water, but when I pull my head up (you know, to breathe) the legs drop down - dragging behind me.

Breathing is the name of the game - blow bubbles the entire time the face is in the water, fully exhaling all the air out before my body turns to lift my head and take in a new breath.

After our session, which turned into about an hour and a half, my training mate, and our swim coach (Deb) informed us we did 800m (more than the triathlon).

We got changed and before leaving, Deb took me over to the treadmills, bikes, etc. and we tried a couple options. I was so excited that the SciFit recumbent bike fit me no problems - it is amazing the amount of accommodations you can make to the seat, it even turns to allow easier access for those who might need it.

I left the gym feeling fantastic! I could do the swim distance required in the triathlon, and found a bike to fit me.

On to phase two, the Bike!

Saturday, February 20, 2016


Do you set New Year goals? I didn't use to, but over the past four years of reclaiming my mobility, I like to set fitness challenges for myself, I am my biggest competitor, and it gives me something to work towards during the year.

In recent years I had set and crushed my goals (flipping a 300lb tractor tire, surviving the survive the farm OCR, etc.) and as the new year approached I didn't have a goal in mind.

One of the first New Year goals I had after reclaiming my mobility, was to complete a 5K. It happened first when I accompanied my husband and daughter to her first 5K to support a cause dear to her and her school, the Ryan's Run 5K (named after Ryan Westen, who lived for only 6 months after being diagnosed with Malignant Infantile Osteopetrosis). I initially went to the race to support my family, but when I got there I did not cherish the idea of sitting around waiting for them, so I asked my husband (who is my coach) when he thought I would be ready to do a 5K. I didn't like the answer he gave me, he said if we kept training like we had been (had only been about three months) I could do it next year. 

NEXT YEAR? So I replied that I would like to see how far I could get, it would be a way to see how far I could go. It was in our local park and it had benches along the way, and if I got to a point I couldn't go on, he could come pick me up after he finished the race.

Needless to say I finished that race in May 2013 even though I was not signed up for it, and my goal was set - to do another 5K in September that year (for the Walk to FightLymphedema & Lymphatic Diseases), to be officially registered, and timed, and to see if I could improve my time over the Ryan's Run.

Best Motivator!

I chose that later 5K because I have secondary Lymphedema to my primary Lipedema, and I could not find a 5K for Lipedema. It was an amazing experience, as it was my first introduction into a virtual 5K (meaning I could do the race here in my home town, while the actual 5K event was taking place in NYC).

I had been thinking about this 5K and loved the exposure Lymphedema was getting (even Kathy Bates is a new spokesperson - woo hoo, have always loved her), and I wanted the same for Lipedema.

I decided I would create a 5K in an effort to spread awareness for Lipedema, and I would organize and take part in the race.

It would be virtual (do anywhere), incremental (can start building up your distances June 1st for the entire month if need be), and even a relay option (get a friend or two, or 30 to help you complete the race). I wanted all levels of fitness to be able to take part if they wanted to, and I wanted it to be fun.

While I was talking about this race on the Lipedema Fitness facebook group, another lipedema friend was talking about the Crystal Lake open swim, that she was taking part in. Given that the pool is an excellent way for those with Lipedema to stay active, I got to thinking... all we need now is a bike component and we would have a Triathlon.

From that moment on it did not take long for the Lipedema 5K to turn into the Lipedema Triathlon, and a new goal was set. Not just a physical challenge for me, but the challenge of turning the event into a way to spread awareness for Lipedema, maybe even come up with a donation towards research; and the perfect month to do such a race is June, national Lipedema Awareness Month...