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...
Monday, January 26, 2015
Wednesday, January 14, 2015
Shake It Up Baby: Using Vibration for Lipedema
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| Cute Pink Lotus Hoodie - huge fan! |
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!
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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!
Thursday, June 26, 2014
LIVING WITH LIPEDEMA
Today is June 26, and was the graduation day of a dear friend's daughter, one we have had the utmost pleasure to watch grow from a wee babe into a lovely young woman. An end to her high school years and sitting at the cusp of her college ones.
As I sat in the stands cheering proudly and holding up a huge, larger than life, picture of her lovely face, that her crafty mother had created, I was caught between my own high school memories and the thought that my ten year old daughter sitting at my side would be up there on that stage, sooner than I could bare to admit to myself.
Today was a big deal in my lipedema life, too. You see a few years ago I was at this same stage for a concert, Elvis Costello and The Police, and I could not fit in the seat.
The theater is an amphitheater (open-air) and has stadium style seating (with arms). If you have lipedema and are later stages, with affected hips, you know of what I speak. If not, chairs with arms are a nightmare for us.
I'm usually able to sit at the edge of a seat and manage for an hour or two, but the rows at the theater are so close together, that there was no place for my knees to go.
Today, I fit. Not all the way, but enough so that I could be there for this most special of occasions. I did not have to miss out on the event.
Now in most circumstances you could ask for accommodations and be seated somewhere more "fitting". But the embarrassment of asking always kept me from doing more. Other lipedema suffers are far braver than I, and ask for and receive accommodations - and you know what? Those folks who do so, educate those establishments, they make them aware of the need for modified seating.
Today, I say thank you to all those brave souls that do not let lipedema stop them from living. Who fight to bring awareness, and are succeeding. They make it better for those of us who do not have the bravery, but we are fighting every day to get there.
While I work on changing me, getting healthier and trying to "fit" into their world, these brave souls work on changing the world! BRAVO!
June is lipedema awareness month, please take a moment to visit these other blogs that are taking part in the awareness blog hop...
As I sat in the stands cheering proudly and holding up a huge, larger than life, picture of her lovely face, that her crafty mother had created, I was caught between my own high school memories and the thought that my ten year old daughter sitting at my side would be up there on that stage, sooner than I could bare to admit to myself.
Today was a big deal in my lipedema life, too. You see a few years ago I was at this same stage for a concert, Elvis Costello and The Police, and I could not fit in the seat.
The theater is an amphitheater (open-air) and has stadium style seating (with arms). If you have lipedema and are later stages, with affected hips, you know of what I speak. If not, chairs with arms are a nightmare for us.
I'm usually able to sit at the edge of a seat and manage for an hour or two, but the rows at the theater are so close together, that there was no place for my knees to go.
Today, I fit. Not all the way, but enough so that I could be there for this most special of occasions. I did not have to miss out on the event.
Now in most circumstances you could ask for accommodations and be seated somewhere more "fitting". But the embarrassment of asking always kept me from doing more. Other lipedema suffers are far braver than I, and ask for and receive accommodations - and you know what? Those folks who do so, educate those establishments, they make them aware of the need for modified seating.
Today, I say thank you to all those brave souls that do not let lipedema stop them from living. Who fight to bring awareness, and are succeeding. They make it better for those of us who do not have the bravery, but we are fighting every day to get there.
While I work on changing me, getting healthier and trying to "fit" into their world, these brave souls work on changing the world! BRAVO!
June is lipedema awareness month, please take a moment to visit these other blogs that are taking part in the awareness blog hop...
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Thursday, June 19, 2014
DRESSING FOR SUMMER
Summer can be tough for lipedema ladies, wearing compression garments is not easy on a cool fall day, let alone one with temperatures upwards of 90 or even 100 degrees.
I have found the maxi dress to be perfect for summer. It is long and flowing, to help keep you comfortable, even when rising temperatures might cause some swelling in our legs.
HERE ARE SOME RECENT PURCHASES I HAVE MADE...
Don't forget to check out the other blogs on the Lipedema Awareness Blog Hop:
I have found the maxi dress to be perfect for summer. It is long and flowing, to help keep you comfortable, even when rising temperatures might cause some swelling in our legs.
HERE ARE SOME RECENT PURCHASES I HAVE MADE...
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| Mitered Stripe Dress from Torrid |
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| Lois from Swak Designs |
Here I am at Easter, with my Lois Dress from Swak Designs. It was cool that day, so I topped it with a Jean Jacket from Lane Bryant (a cute shrug or cardigan would work just as well)...
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| Me in my Swak Designs' Lois Dress |
Another great find is this California Maxi skirt from Swak Designs, add a tank and cardigan, like they have in their Boho Babe look, and the options really are endless...
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| Boho Babe Look from Swak Designs |
I recently found Torrid when a lippy sister posted a picture of herself on vacation, and I fell in love with their vibe. Swak Designs, on the other hand, I have been a fan of for years. Sign up for Swak emails and every Sunday you'll get a big discount notice on one or more items (typically 40% or more off). Swak is short for "Sealed With A Kiss".
Maxi pants are another fun new look, see what you can find, and post your recommendations in the comments.
Maxi pants are another fun new look, see what you can find, and post your recommendations in the comments.
Other Tips for Keeping Cool this Summer:
- Put your compression garments in the freezer
- Pick up a great new misting water bottle, like this one from 02COOL, which can be purchased at Amazon or other locations for about $12:
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| 02COOL |
Don't forget to check out the other blogs on the Lipedema Awareness Blog Hop:
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Thursday, June 5, 2014
Welcome to Awareness
June is Lipedema Awareness month, and I'm working with other bloggers to spread the word as much as possible, so please take a moment after reading my post to check out their posts as well...
According to good old wikipedia, Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects, or sensory patterns. And while I would love for everyone to become aware of, and understand a little more about Lipedema, I am gearing this post to those currently with lipedema.
The biggest lesson I've learned since being diagnosed in 2004, is that I am my best resource.
In a nutshell, I changed my eating style (to Zone Diet in November 2011) and my activity level (to modified CrossFit in March 2012) and within a year and a half, I have dropped about 60lbs., and most importantly, I have lost about 30 inches off my legs. That is not a typo - 30 INCHES OFF MY LEGS.
Of course to lose 30 inches, you must have a lot to start with, right? Yes, and I still do. I am not a size 6 or even a 16, but I have changed how I live, and you can, too.
I am not saying the Zone Diet and CrossFit are what will work for you. It might, and it might not. What I am saying, is to be your own resource. Try new things, and document the changes you see in your body. Changes can be measurements, recovery time, endurance, etc.
Recovery time was a big indicator for me. As the amount of time it took me to catch my breath after walking a short distance grew less and less, I walked more and more. Building up that distance until one day I walked my first 5K.
If something works, keep doing it. If something doesn't work, doesn't feel right to you, then stop doing it. Listen to yourself, nobody is a better judge at what is good for you than you.
According to good old wikipedia, Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects, or sensory patterns. And while I would love for everyone to become aware of, and understand a little more about Lipedema, I am gearing this post to those currently with lipedema.
The biggest lesson I've learned since being diagnosed in 2004, is that I am my best resource.
In a nutshell, I changed my eating style (to Zone Diet in November 2011) and my activity level (to modified CrossFit in March 2012) and within a year and a half, I have dropped about 60lbs., and most importantly, I have lost about 30 inches off my legs. That is not a typo - 30 INCHES OFF MY LEGS.
Of course to lose 30 inches, you must have a lot to start with, right? Yes, and I still do. I am not a size 6 or even a 16, but I have changed how I live, and you can, too.
I am not saying the Zone Diet and CrossFit are what will work for you. It might, and it might not. What I am saying, is to be your own resource. Try new things, and document the changes you see in your body. Changes can be measurements, recovery time, endurance, etc.
Recovery time was a big indicator for me. As the amount of time it took me to catch my breath after walking a short distance grew less and less, I walked more and more. Building up that distance until one day I walked my first 5K.
If something works, keep doing it. If something doesn't work, doesn't feel right to you, then stop doing it. Listen to yourself, nobody is a better judge at what is good for you than you.
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