Tuesday, June 21, 2016


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.

Monday, June 13, 2016

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