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...

1.	Creative Life Enterprises	2.	Lipedema Fitness
3.	Lipedema Simplified BLOG	4.	LIPESE Blog
5.	LipLady Fab

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...

Mitered Stripe Dress from Torrid

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)...

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...

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.

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:

02COOL

Don't forget to check out the other blogs on the Lipedema Awareness Blog Hop:

1.	Creative Life Enterprises	2.	Lipedema Fitness
3.	Lipedema Simplified BLOG	4.	LIPESE Blog
5.	LipLady Fab

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.

1.	Creative Life Enterprises	2.	Lipedema Fitness
3.	Lipedema Simplified BLOG	4.	LIPESE Blog
5.	LipLady Fab

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Time For a New Goal

So, how are the New Year’s goals coming? Did you set one? Did you already cross it off your list and need a new one? Are you looking to get inspired to create one?  Well, it is never too late to set a goal for yourself.

One more step then yesterday, a few seconds longer in my standing position, or a few more attempts at getting up out of my chair.  Goals are personal, and just as meaningful to you as running a marathon might be to someone else.

You might recall from my earlier post this year, that one of my 2014 goals, the 800lb. gorilla, was to flip a tractor tire, solo, as in all by myself.  They weigh a little over 300lbs, and thankfully you never lift the full weight, but it is large and cumbersome and just getting down into a low enough squat and getting a literal grip on it, is a challenge.

On a Saturday afternoon in April (the 26th to be exact), after our regular workout in the park, I walked out back to find my husband to tell him something and out of the corner of my eye the tire loomed.  No longer snow covered, and looking larger than life, I could almost hear it's low growl calling my name.

Without thinking about it, I walked over, squatted down, and it was up.  I was standing there with a tire on end and desperately looking for my husband to validate to the world what I had just done.

I called out, “babe?”....  Nothing!  No coach/hubby coming to see.

I called out again, “baby?”...  and from around the corner of the house he came.  I pushed it over in front of him with a grin wider than my hips, and it hit the ground with a loud, echoing thud.

I then squatted down, and did it again.

My husband was so proud, he couldn’t have been more proud as a husband, a coach or a training partner; and while it was amazing to see his love and happiness for me, it had no match to my own sense of accomplishment. 

It wasn’t planned, it didn’t take more than a few minutes, and I have been walking a little taller ever since.  Time for a new goal!!!

March Fitness Challenge - Emotional Rescue

For the past month the fitness challenge has been an emotional one.  While it is easy for us as Lippy ladies to give compliments to others and see the hard work and progress they are making in their strive to become more fit, it is really a challenge to give ourselves compliments, and this was the inspiration for the March Challenge.

So while I sit here listening to Mick Jagger singing to me that he will be my knight in shining armor, coming to my emotional rescue I begin...

Hearing a compliment from someone, from anyone, is amazing and I find that my first instinct is to make light of it or joke about it, and my husband hates when I do this.  He finds me beautiful, just as I am; when I wake up with hair going every which way and Clark Kent glasses dangling ever so close to falling off my nose, he reaches for me and embraces me with a hug that reassures me I am his goddess.

For me just accepting a compliment is tough, but giving myself one, especially of a physical nature, well now you are crossing the line my friend.  It was only seeing others in the Lipedema Fitness facebook support group downplaying themselves that got me fired up enough to say NO MORE.

I was excited to see the ladies step up to the plate, at first giving themselves backhanded compliments (like from the waste up I am pretty) - while yes, it is very true, you are pretty, but not only from the waste up.  Then more and more obvious compliments started to show up, so much that if you didn't know it was a compliment one's self challenge and happened upon the support group you might think we were a bunch of self lovers - and why not?  Why shouldn't one love their own self?

I remember reading something a long time ago that God doesn't make garbage, and by not appreciating one's self you basking were saying that God made a mistake.  I'm a spiritual person, not overly religious, but that really stuck with me over the years.  Then I came across a movie "What the Bleep do we Know?" that had a part in it, an experiment where they complimented water both positively and negatively - I'm not sure what you believe, but it was an interesting view point for sure on the power of one's own words and the words of others.

I began slowly with my own compliments, "you have great hair", "you have a wonderful smile", then I got more in to it, "I love my secret muscles" - secret because most of the world cannot see them hidden under my lippy fat, but I can feel them, and they are damn sexy.  Shoulders I never knew I could have, sing on Mick, but know that I am my own emotional rescue.  We can not believe another until we can believe ourselves.

So get up and go to a mirror, look at it, that is you - you are a beauty!  Now say something nice about yourself.  You might find you laugh at first, find that you start with small compliments, but do it at least once a day - and say it out loud using your own name.  Try it for a day, for a week, for a month, for EVER - what can happen when you know you will get at least one great compliment a day from someone who knows you better than anyone else possibly could?  I don't know, but I look forward to finding out!

February Fitness Challenge

On February 1st I decided to start a fitness challenge for all my lipedema fitness facebook friends; it was inspired by the Tabata Intervals I have done with my CrossFit husband.

The biggest selling feature is that the entire workout takes just 4 minutes.  Everyone has 4 minutes, right?  It will probably take you longer than 4 minutes to read this, and in that time you could have completed a workout.

How it works is this, 20 seconds working (hard as you can while still keeping good form), 10 seconds of rest - repeat for 8 rounds.

There are even tabata timmer aps for your phone, iPad, etc. Some are free and adequate and some will cost you a little bit for more features, but basically they count down each round in various ways.  The very basic options with only a flashing light (or color change from green during workout, to red during the rest period), all the way up to a song created specifically for the workout that counts down while you jam out.  Pick one you like, for me I needed one with sound, as I couldn't always see the iPad I use for my timmer, but the song timmer I tried was annoying, I prefer my own music, and the one I picked allowed me to hear my music and the ap warnings when it was work vs rest phases.

I set up this challenge with movements that are required for living life with lipedema (actually for anyone living life).  Push-ups, Sit-ups, and Squats.  These movements help you move your body, get out of a chair, get up from bed, etc.  But these movements also strengthen your core, helping you do more than live - they make you feel stronger, and encourage you to try more, to be more.

The challenge is this: day 1 push-ups, day 2 sit-ups, day 3 squats, day 4 REST.  Repeat those days for every day of the month of February (ot whatever month you choose to start this challenge, because if you are still reading this post, you either really love me, or are thinking about trying this out for yourself).

When I began, I acheived pretty good numbers, I went all out and could not understand how anyone could acheive higher numbers of reps than I.  Not because I thought I was the best in the world, but because I was truly pushing myself as hard as I could.  My husband was great, he inspired and coached and ensured I kept good form, and then hit me with the reality (his numbers).  But when your body is going as fast as it can, you wonder how in the world you will get faster, stronger, etc.

At the mid month point I looked back at my results so far, and I was floored.  Not only had I acheived more and more reps, but was consistently doing so.  It snuck up on me, not enough to notice while doing them, but substantial when looking back at the amount I had done.

A great motivator is to post your results, which I did on my lipedema fitness facebook support group page, and even a few of the other ladies posted their results.  It gets you up at 11pm to put your sneakers on, becuase you know you have to post your results.  But I also began posting on my regular facebook page.

I love realizing that my worlds are meshing, the news I share with others like me on the support group is the same news I share with others like me in different ways.  Those friends I've made on the support group have crossed over to my personal life and my personal friends, people I have known for years, most who knew nothing about my lipedema, are here reading this blog, learning more with every post - how special is that?  Very, so share your hardwork with those that care about you, get them involved, and watch the motivation, inspiration and validation you receive from each of the parts of your life.

We are LIVING with LIPEDEMA, emphasis on the LIVING!!!

Results to date for February Lipedema Fitness Challenge:

• Push-ups: 71, 74, 76, 94, 100
• Sit-ups: 96, 96, 112, 120, 122
• Squats: 123, 138, 136, 151, 156

But the most important thing I have learned from this challenge, is that I have a pretty big ego.  Here is a look at my facebook post from the 17th:

"Feb. Fit. Challenge, 2/17 results (push-ups): 4 rounds at 13, 4 rounds at 12, for total of 100 push-ups in 4 min.

Felt slow and out of sync, had music kicking even. Checked prior results this month: 71-74-76-94-100.

Crazy how our minds can take us out of our game, even when achieving more than we have.

New goal for me is not more reps per round, but less ego. Trusting my body, doing what I can and being grateful for whatever it is."

And to quote the White Stripes lyrics, "and I said it once before, but it bears repeating now"...

NEW GOAL FOR ME is not more reps per round, but less ego.  Trusting my body, doing what I can and being grateful for whatever it is! 

From Here To The Post Office

Listen to your body, when? All the time. Listen to your brain, when? Hmm, jury is still out on that one. We have to depend upon ourselves for so much, I for one would plan out events so I could pace myself physically (and honestly decide if the effort was worth the event).

But I have found that even now that I feel 100% more mobile then I did a year ago, I still listen to that inner voice that tells me I can't do something.

A year ago, walking to my mailbox (I know I've said this many times, so please forgive yet another reference) was a chore. I would pull into the driveway, park the car at the end, then get the mail and drive the rest of the way up to the house. I can now walk to that mailbox and back and the only reason I park at the end (when i do) is because currently my driveway is a sheet of ice and the fear of a fall outweighs the need to feel like I can walk it now.

Earlier this week, I walked to the post office from my office. It is a little over a block away (a little further than my mailbox), and it was the first time I had done it in the year and half that I have worked there. Typically I go to the post office on my way into work, drive there, then drive on to the parking lot. I walk further to and from my car every day, but something in my head said I can't walk to the post office, so I never did, until this week.

I was almost in tears when I came out of the post office and turned to head back, I could actually see the pillars on the front of our building from where I stood in front of the post office - it was that close. I know that walk would have been very painful when I first started my job and the fear of that pain has kept me from even considering it, until now - which by the way was a fluke that I even did so, I had parked on the street and while I was walking back to my car I noticed how close the post office was and decided I would walk to it, instead of driving to it as I left for the day.

This is a long post about a short walk; but it is monumental for me emotionally, I still have a lot to work on in thinking I can do something and not just continuing to immediately say "I can't do that".