Monday, June 29, 2015

Gratitude - June is Lipedema Awareness Month


I'm not sure if you know, but 3+ years ago I could barely stand, let alone walk, and as I sit here typing I have 11,468 steps registered on my fitbit.
I have primary Lipedema, and secondary Lymphedema (because it took so long to get diagnosed). Most doctors have no idea what it is, let alone how to diagnose or treat it. There really is limited treatment, and there is currently no cure.
3+ years ago I started a new job at the Temple, one I was not sure I could keep because of the walking involved to get to/from work and the huge flight of stairs to get to/from my office.
My loving husband and soon to be coach began working with me in CrossFit (he is a certified CF instructor and amazeballs at modifications). He had been training others for years, and 3+ years ago it was my turn to be added to the team. We switched eating style to the Zone at that time as well, but we don't consider it a diet, it was/is a change of eating style.
We stopped soda and as much processed food as we can, but we still live. We still share in celebratory cake from time to time, and even have pizza after every 5K we finish.
I have grown stronger and stronger over the past couple years, and I am forever grateful to my coach/hubby and my training mates. You know who you are, and I love you deeply.
Survive the Farm 2015 (Obstacle/Mud 5K)
Couldn't have "survived" it without these guys!
Today after our workout I wanted to mow the lawn, and began on the side yard. headphones on, I am sure I was a sight to those drivers passing by. After the side yard, i moved on to the front yard - more performance of singing and dancing while I mowed. I had a ball! I love mowing so much, and it is a great workout, too.
I started to cry towards the end of the lawn. I felt so good, so blessed, so grateful, and I recalled the beginning of my journey back to regaining my mobility. I looked at the driveway, maybe 50 feet, and I recalled those brutal first steps into my training, and here I was 11K plus more steps and I still felt amazing.
June is Lipedema Awareness month. I am sharing here because I want to thank those who mean so much to where I am now, and to spread awareness, so if there is someone out there in a similar situation, feeling their own mortality, please know that little steps do add up. You are not alone.

Wednesday, June 3, 2015

JUNE IS LIPEDEMA AWARENESS MONTH - Give Yourself a Challenge

It is what we do, right?  We give ourselves challenges.

Sometimes others give us challenges, but either way accepting and then crushing a challenge feels A-M-A-Z-I-N-G!

It doesn't matter if it is a mental or a physical challenge, both, or something entirely different, but the act of working towards a challenge (or goal) and accomplishing it is a sure way to make you feel alive.

I've taken to posting my personal challenges on facebook, I don't know if I'm looking for someone to say I'm nuts and talk me out of it, or to cheer me on in the hope it lifts me up when I think I'm nuts for attempting it; but either way the act of posting it out in the open for all the world to see ensures one thing, I will fight like the dickens to crush that goal. (Thank you Mr. Shakespeare for that wonderful expression, "like the dickens")

Fighting for my fitness has become a lifestyle.  You see Lipedema has a way of making you feel weak, both mentally and physically, and it can also make you feel like a victim. Like there is nothing you can do about your condition, that your body will eventually break down completely and you will be trapped inside of it like a prisoner on death row. That sounds dramatic, but trust me when I say IT IS REAL.

Fighting back in whatever way I can is the only way I have found to take my life back.  I am living with Lipedema, I am not dying from it.

Training on the Ropes Challenge Course at Ndakinna

So here is my challenge for you - spread awareness about Lipedema.  Tell anyone and everyone who will listen, find creative ways to do so - there are some great videos on youtube, created by wonderful people all over the world, like the one below from Sherry Simoes (Lipedema Network Canada).

The more we spread awareness, the more lives we touch, the more we learn, the more we grow and the closer our chances of finding other life changing things we can do for those of us living with Lipedema.

Saturday, March 21, 2015

Bear of a WOD


Saturday WOD (workout of the day) - (20) slam ball with 20lb medicine ball, bear crawl across the dojo, (20) American kettle bell swings with 25lb KB, repeat for 12 minutes. I got as far as finishing the bear crawl into the 4th round (so 80 slam balls, 7 bear crawls, and 60 KB swings).
It was brutal. After the first round coach/hubby alerted everyone that 3 minutes had passed. 3 MINUTES - what the what??? We were all dying, and breathing was hard and fast; head down and I just focused on each movement as I was in it, keeping form as good as i could, and before I knew it we had 40 seconds left. As my hand crossed the finish line on the last dojo bear crawl, and coach called time, I slumped down to the floor. Not sure if it was a good position or not, thinking I could probably breath better if I stood up, but not being able to move for a few moments.
Slowly I turned over and sat up, a teammate brought me my water bottle (she is such a good partner), and slowly the breath settled, and the heart rate came back to normal. Small discussions, and some of them began handstand walking (impressive to behold); I could not move, and I was OK with that. I just put in 15 minutes of warm up and 12 minutes of actual WOD and I felt good - NO, I FELT GREAT!!!
I knew I had just done a really hard workout for me. I was proud as hell I made 7 trips across the dojo on my hands and feet (coach is trying to prepare me for the survive the farm race so lots of bear crawls in my future).
I sat talking to another teammate, as she asked if coach liked thinking up various tortures for us, and I started breaking down what he actually does... he looks at his trainees (he calls us athletes) and knows what is hurting them (shoulder, knee, etc.), what they are training for (half marathon, spartan race, survive the farm, being able to get up off the floor, etc.) and he modifies and creates workouts that push us, that challenge us, that make us see incredible results when compared week to week, month to month and year to year.
i am blessed to have this coach also as my hubby, truly blessed. I pray that all of you can find a coach with similar ability, because it truly makes a huge difference in what you think you can do, and what you can actually do. We can do it. It doesn't matter what our size is, what our mobility is, we can find ways to use our bodies to move our bodies.
Sorry, very long post, time for a nap smile emoticon - happy Saturday!
(taken from our Lipedema Fitness Facebook Posts)

Monday, January 26, 2015

"Move into your life (Making Exercise Work For You)" - 2014 FDRS Conference Presentation

In September 2014, my coach/hubby and I were honored to not only attend our first Lipedema Conference, but to also be there as presenters, and share our story of how fitness has given me back my mobility and the ability to Live with Lipedema.


Here is the video of that presentation, as found on Youtube, as are all the presenters.  I highly recommend you find the Fat Disorders Research Society 501c3 channel at Youtube and watch them all.


FDRS put on an amazing conference and it was very wonderful (and emotional) to be in a room full of 100+ other women just like me, living with Lipedema.


The video is about 24 minutes long, the opening is a warm-up led by my amazing husband Bob, which is typical before all our workouts, to ensure joints are loose and ready to be worked, and then I take over the mic for some info on how my life has changed since my diagnosis...





Wednesday, January 14, 2015

Shake It Up Baby: Using Vibration for Lipedema

Cute Pink Lotus Hoodie - huge fan!
WBV seems to be all the rage these days.  What is WBV you ask?  Whole Body Vibration.

A quick search online will tell you WBV is nothing new, but possibly started as far back as the 1800s. I read about treatments for sanitarium patients, and studies for russian astronauts.  From Michigan, to East Germany, to Russia (with love - sorry couldn't resist).

But WBV was new to me, and one of the best things I took away from attending the FDRS Lipedema Conference in Washington DC last September was information about a vibration machine called the Vibra Pro.

Dr. Peter Prociuk was there as a vendor, and as my daughter led me over to the side of the room to "get a ride" on one, I was introduced to the latest in vibration treatments.

I stood on the machine (similar feel to standing on a treadmill or elliptical machine in a gym, complete with hand rails if you need them for stability), and the good doctor turned it on. Slowly at first, then gradually increasing the speed.  It is like standing with your feet on both sides of a teeter totter and once the power was turned on it rocked your legs up and down.

Well you can imagine the view from behind was an interesting one, as this machine began to shake all of me, and I do mean ALL of me.  If you know anything about a lippy lady, she has, as Sir Mix Alot put it so eloquently - Baby Got Back.  And my backside was giving quite the performance, so slightly embarrassed, I quickly found my way back to my seat after only about 5 minutes.

Further research online would tell me WBV could help with metabolism, reduction of stress, and the key words "improve lymphatic flow".  That is what every lipedema patient wants to hear.  It is what we are constantly trying to improve.

With that in mind I made the call and purchased the machine, and have had it since about October. I have tried to use it faithfully every day, but alas have not always done so, the holidays can be brutal to diet and exercise.  But I do try to get in at least once, and on good days twice, each day (10 minutes in the morning and 10 minutes at night).  So far I just stand on it, a few squat poses here and there.

I have not noticed a drop in weight, but I have noticed some muscle toning, and better core strength.  It is not my only source of exercise.  I do modified crossfit a couple times a week and in warmer months like to get outside and walk/hike.  I was also going to the pool for aqua aerobics once a week, but for now I stopped that to see what the changes would be with just the WBV and my other crossfit workouts.

I am slowly feeling changes in my legs, starting to feel knees again, not sure if the WBV is to thank for that, or the extended time doing the crossfit, but I'm not stopping either to find out.  It goes back to trying new things and seeing what works and what doesn't work for each of us with this condition.

I'm willing to give it some time and see how things progress.  Is WBV right for you?  I am not the person to answer that for you.  It was about $1100 for our machine (which was a conference price and far below prices I've seen online for the same machine), that is not something everyone can spend to test out (I thank my sister-in-law for mine).  The best suggestion, check your local fitness clubs/gyms - a lot of them are carrying them and try it out there first to see if you would benefit from it at home.  Even PT offices carry them as well, call around in your area and see what you find.

I am grateful to be able to use it daily, and feel it does benefit me, if nothing more than emotionally, it is ten minutes of quiet time (and the machine itself is fairly quiet - more so than I thought it would be), I put on some headphones and rock out.  I am optimistic at the changes I'm noticing in my legs, and hope to report back at a later date that the WBV had something to do with that.

There are claims that you can use WBV for weight loss.  Is that possible?  I'm not sure.  I would venture a guess and say no, at least not all by itself, but a clean eating lifestyle and other exercise added, I think it can go a long way to help you feel better.  If lymphatic flow improvement alone, getting the sludge moving about and out of you is bound to make you feel amazing!

UPDATE: It is October 2023 and I still use this same machine for 20 minutes every morning as part of my morning self care routine.

Friday, September 19, 2014

The 2014 FDRS Conference Experience


The first weekend in September found me traveling with my husband and daughter from upstate NY to Washington DC, via Prince Frederick MD.  We left our house at ten till 8:00am on a Thursday morning, with the understanding if we were going to be stuck in traffic, it would be best to have it be traffic we are familiar with.

Surprisingly the traffic moved at a pretty good pace and we would be heading towards NJ, and the dreaded New Jersey Turnpike.  In the past, no matter how long Google Maps said the trip would take, it was always held up for hours by the NJ & Delaware Turnpikes; the last trip (over six years prior) took twelve hours, even though Google quoted it at about six and a half.

The travel gods must have been smiling down on us, for there was minimal traffic on both these routes, and we were making pretty great time.  We would pull into the driveway of my sister’s home in Prince Frederick by a little past 5pm, after taking a leisurely lunch in Delaware to give her time to get home.

It was great catching up with her and meeting her neighbor; laughter and wine ensued until the wee hours of the morning.  Luckily we were not in too much of a hurry the next day, we had about an hour drive to DC, and were not expected to meet up with the fashion show ladies until late afternoon.

Friday morning I was able to take my time getting ready, I took a nice long shower, washed my hair, even enjoyed a healthy breakfast my husband prepared, and off we went, heading into one of our favorite cities.

The sun was shining and the breeze was light.  The excitement, and I’ll admit the nerves, were building.  I had two big events to prepare for, the first being a fashion show with several other lippy ladies, to show off some compression options to the lippy ladies that would be in attendance, and the second would be our presentation on Lipedema Fitness at 10:15am Saturday morning.

Walking back to the car from checking in with my daughter at the Washington Hilton, I hear “Patricia?” and I see a lovely lady walking towards me, “I knew it was you!”  For the past year I have been getting to know these lovely sisters of mine on FaceBook and I cannot describe how it felt to meet them in person, and to feel like they were celebrities because you are going “oh my god, it’s so and so” in your head as well as actually saying it out loud.

A quick hug and hello to my first lippy sister sighting, and my daughter and I were on our way to the car once again.  “Are you famous?” my daughter asked me, with her big brown eyes as wide as saucers.  I laughed and told her no, and explained the FaceBook phenomena.

We made our way upstairs and got settled in, and then met up with some of the conference ladies sitting in the lobby; after making the rounds with hugs, and grinning wide, yes, I was in love with these ladies, and to say I was giddy, was a huge understatement.

The conference had over 100 ladies in attendance and all of them were just like me, no explanation of what it took to get there, they all had there own similar story, no need to talk about compression issues, travel concerns, pinched hips, heavy legs, etc.  Just no need to explain, how refreshing!

We found out the fashion show would take place after a good portion of the nights events, there was a bit of a break for vendor visiting when we could slip up to our rooms to change, and then be back down within the half hour.

The nerves flooded me in the room, as my wonderful husband helped me into the full-length compression garment (from ankle to just under my bust line).  Hooks and eyes under a zipper that ran the full length on each side, then straps that would go over my shoulders and latch like a bra strap would.  Thankfully it went up a lot quickly than the first time I tried it on.  Hubby ironed the new Torrid Swing Henley top I purchased to wear over my compression, as we were instructed either a short skirt or shorts – which I had neither, so a new tunic would be my option.

The next step would be the ginormous 5 1/2" wedge heels I picked up a week before, from Candies of all makes.  I had not worn Candies since high school.  I had been surprised to try them on in Kohl's, surprised when I could actually walk in them, since I’m a Dansko clog girl; heels typically posed a huge problem.

Feeling a bit like Tina Turner I walked tall as my family and I made our way to the elevator, growing closer and closer to the runway, yes an actual runway with fashion show music and all, the nerves flooding in, but then as I turned the corner I saw other ladies in various compression outfits, all looking lovely and smiling and the nerves faded away.

The music began and the ladies strutted down the runway, showing off A Big Attitude workout attire, Solidea micro massaging leggings, arm sleeves, and finally Chelle and I would make our way down in custom post surgical garments to the sounds of “She’s a brick house”, the Commodores themselves would have been proud!  A little slip on the heel at the end of the runway would have me searching for the chairs, but all in all what a fun show!


Some of us later stage ladies hung around to get a photo for the Stage 3 and 4 group on FaceBook, and our fellow sisters who could not make the trip and join us.

That was the end of Day 1; I would reach out to my bestie from childhood (who lives right in DC, a mere 7 minutes away via her bicycle) and she would be joining us for dinner in the hotel restaurant.  We would begin chatting and not stop until the bartender came around announcing last call.  The two of us had been left hours before by the hubby and daughter to catch up, and we laughed not realizing how late the hour had grown.  We parted and made plans for her to return to see our presentation the next morning.

As I headed upstairs around 1:00am the nerves set in once again; you see I had drafted my presentation, but not finalized it, and I had only briefly went over it with my husband, who would be sharing the stage.  Nothing I could do that night but wash my face, remove my compression and hop into bed after checking that my friend made it safely home.  My apologies to her husband, who had made several attempts to reach her during our dinner, but sadly neither of us heard the phone.

The first break of light peeked through the heavy curtains of the hotel window, our nations capital was trying to come to life, but I had been up by then working out the kinks and settled on five slides.  With the small file size, I was sure the presentation would email just fine to Felicitie (the very lovely pregnant woman running the computer during the conference, as well as many other tasks that require me to take a moment here and now to thank them all – Thank you Felicitie, Yvonne, Nancy, Maria, Dr. Herbst, Leisa, and I’m sure I’m sadly forgetting some, you did an amazing job and we are ever so grateful to you).

The family finished getting ready and we were off once again, anxious for presentations from amazing doctors and surgeons, and my personal favorite was the Yvonne and Dr. Herbst’s “A Day in the Life of a Lippy Patient” presentation.  It was informative, with supplement info, dry brushing techniques, and even great news... coffee is good for us!  It’s an antioxidant!  

Besides being really informative and painting a true day in the life of, the presentation was hysterical - Dr. Herbst played Yvonne's conscience during the presentation and I can still hear her saying "don't forget to..." in that deep hypnotic voice. (insert all the things we lippy ladies do each and every day, like dry brush, take our supplements, self lymph massage, exercise, eat, breathe, etc.)

Dr. Stutz was wonderful, a lot of information on lipedema and WAL surgery, and humor, he was a hoot!  There was a break before we would go on, and before I could even get nervous again, I turned to see my childhood friend Bettina, with the best smile ever, making her way towards us, and making me feel so comfortable.  She would sit with our daughter as we made our way to the front of the room.

Our presentation honestly was a bit of a blur, Dr. Herbst introduced us, handed me the mic, and then I exhaled and simply began talking to my sisters.  Telling them my story, how two years prior I would not have been able to be with them at the conference, because my mobility was nearly gone, and the depression I had slipped into after my diagnosis, and then thankfully, the journey I’ve taken over the past couple years with my coach/hubby to get to where I am now, standing before them to share a tale, that for most was probably very similar, or very scary.

I cannot tell you the humbling experience to have a gentleman come up to me with tears in his eyes after our performance, to thank me for sharing my story, our story. Tears are blurring my vision now as I try to type through the memory – he has forever changed my life in that one moment of gratitude.  And, lucky girl that I am, he would not be the only one to give such a gift to me that day.

I look forward to seeing the DVD once it is ready, because honestly the rest of the conference was a blur as well, I was done emotionally, and I am in such gratitude to the ladies I got to meet and share stories with and I must say thank you lord/divine spirit/whatever you believe in, for giving me this opportunity. For without Lipedema, I would not have this connection with the lovely, funny, talented, special ladies that make up the Lipedema Sisterhood.  I am truly blessed.

PS – I will not even begin to tell you the REAL show I put on for the audience, when I tried out the Vibration Plate machine!  Sorry Dr. Amron, I’m sure it was hard to focus on your presentation with all that booty shaking going on at the side of the room, thanks ladies for not posting pictures of that.

Sunday, August 31, 2014

FDRS Conference

I am thrilled to write about the upcoming FDRS (Fat Disorders Research Society) conference in DC next week (September 5 - 6).  There will be many highlights, like Dr. Josef Stutz, a German doctor who specializes in the WAL (water assisted liposuction) surgery for those with lipedema, and Dr. Karen Herbst (www.lipomadoc.org) - a board certified Endocrinologist in AZ who has a fascination with fat and how it behaves, and who listed:
  • Hope
  • Experienced Fingers
  • A Plan, and
  • A Partnership

as what she can provide to you.  As someone with Lipedema, those four items really spoke to me.  Her website has a wealth of information, do yourself a favor and check it out.

I am humbled to announce that my husband/coach, and I, will also be presenting at the conference.  We will have about twenty minutes to talk about our journey with lipedema and how fitness has changed my life with lip.  

My husband/coach is just that, he is my husband, with a pretty up close and personal experience of what it means to have lipedema, and he is my coach, with a CrossFit certification and 4th degree black belt/Instructor in Karate (saratogaiku.com), not to mention years and years (he'll turn 50 in October) of being an athlete.

Sharing my story with other lipedema ladies and their families is a real honor, I look forward to sharing what has worked for me over the past two years, and I am looking forward to hearing what Dr. Stutz and Dr. Herbst have to share, but mostly, I cannot wait to meet other ladies just like me!