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.