STAY STRONG & FIGHT BACK: THE EMOTIONAL SIDE OF LIPEDEMA

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.

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

MOWING IS MY FAVORITE AND MY BEST

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.

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!

NEW YEAR, NEW GOAL: Creating The Lipedema Triathlon

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, they could do all of it or some of it, 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...

MUSCLE SORENESS, IT'S A GOOD THING

There are several different WOD (workout of the day) recovery experiences I have noticed as someone with Lipedema who does CrossFit.

1. WOD requires a nap because I am totally drained
2. WOD leaves my arms and legs feeling like rubber bands, but no nap required
3. WOD leaves me feeling amazing and strong, then the next day I feel sore
4. WOD leaves me feeling amazing and strong, and then 2 days later I feel sore

What the What? Yep, that last one is always such a shocker, but just a quick google search, and would you look at that, it even has a name...DOMS (delayed onset muscle soreness) or I guess it can even be called "muscle fever" according to good old wikipedia. Ultimately it is the pain and stiffness felt 24-72 hours post WOD.

The good news, the reason muscle soreness is a good thing, is that it lets you know you have muscles, and that what you did the day or two prior was working those muscles. It lets you know you have some control over your body. You may be sore today, but you will be stronger tomorrow!

I will never admit this to my coach, but I actually like the muscle soreness. Shh, you did NOT hear that from me. The reason I like it, is because with Lipedema it is so hard to see the results of the work. Our muscles are hidden under Lipedema fat. Abnormal fat (sometimes very painful fat) that does not respond to diet and exercise. But the soreness I feel, makes me notice all my muscles, even those hidden from the world, and even more detrimental, hidden from myself.

Our emotional health is just as important as our physical health, and feeling in control of our bodies is HUGE. This condition sure tries to take a lot of control away, so anything that can make us feel in control of some aspect of our lives is very important. Fighting to stay fit is an ongoing battle, and for me the fight helps to make me feel strong, the muscles go a long way, too. But the fight keeps me sane, I am taking action against the thing trying to slow me down.

The scary part with Lipedema, is making sure you can tell the difference between muscle soreness from a good workout, and lipedema pain.

Only you can know the pain you are feeling, and only you are the best judge of what you should or should not be doing. CrossFit trainers are amazing people, have incredible training and abilities to make MODs (modifications) to workouts for all different reasons, but Lipedema is a pretty unheard of condition in the medical field and one can imagine even more so in the workout field. So please make sure you tell any coach/trainer, etc. about your condition, the symptoms, and the fears you have.

Unfortunately I have learned over the years that we have to try something, and then notice the results. We have to become our own best resource on ourselves, because even our Lipedema friends/families may respond differently than we do to whatever efforts we are trying to battle Lipedema. From the effectiveness of supplements, to WODs, to compression, etc.

Keep fighting, you are worth it! We are making changes, even we cannot see!

To quote one of my favorite movies, Galaxy Quest...

One Body, One Life

Can you imagine the care you would take of your vehicle, if you only got one in your lifetime?

Photo by Casey Etter-Bobb #badnova 

Take a moment to really think about that, what would you do if you just got one vehicle? What would you pick as that vehicle? Something fast and fun? Something comfortable? Something that could transition through your stages of life?

We each have different attachments to our vehicles, some use them for transportation, some for fun, some even for show, like the picture above from our good friends Thomas Bobb and Casey Etter-Bobb, they were the first place I thought to seek out a photo to illustrate an amazingly well taken care of vehicle. 

The point being, that we take great care of our vehicles now, even when we trade them in every few years, and our bodies deserve at least the same level of care.

You are worth the best attention, the best love,

the best of everything you can muster!

I know some days it can seem overwhelming with the amount of time, care, and attention we put into living with Lipedema, and feeling overwhelmed is when our emotional side needs the most love. But taking the best possible care of our bodies is not just good advice for those of us with Lipedema, it is good advice for every BODY.

Keep up the good fight my friends, you are doing things now that you will continue to see the benefits of for many many years down the road. We don't get to trade our chassis in, we only get the one.