lipoedema

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Everyone in my friend list should go watch this video. This is my reality and I wish everyone around me would watch it.

Then they’ll understand.

Pictured are 3 women with lipedema at different stages.

The lack of lipedema related posts on tumblr is alarming, so I will come out as another lipedema fellow.

Lipedema is a lifelong condition with no cure. It is in our genetic code but the cause is unknown. The main problem is that patients don’t know about their conditions because doctors are not educated on it.

http://en.wikipedia.org/wiki/Lipedema

I am almost 28 and no doctor has even mentioned this to me, even though I have all the symptoms.

I’ve always been a “big girl”, aged 3 I already began dieting. My size and my weight have always dictated how I dressed and how I acted. I even failed PE because I couldn’t do what my classmates did.

I underwent the most radical diets with awful yo-yo effects. At age 10 I was already well over 100 kg.

Some years ago I was looking to undergo bariatric bypass surgery, and as years go by I am more and more glad that I didn’t do that. Because I didn’t need it.

That surgery does nothing for lipedema and I have a small waist to begin with.

But no doctor has informed me about it and I believe it’s very dangerous that obese patients are pushed into that awful surgery without even looking at their conditions. Since as I said doctors don’t know about lipedema, this is our task to educate them on this.

Soon I will start going to a specialist to get treatment. The only treatment involves hand made lymphatic drain and compression of the affected limbs.

If you ever see a woman (this condition almost only affects women) with legs way too big for her torso (sometimes accompanied by very big upper arms), don’t look at her weird. Don’t assume she’s fat. It’s a condition and it’s a serious one.

Today has been one if my ‘bad’ days, my left leg is so tender it hurts no matter what way I sit, stand or lay down. June is National Lipoedema Month. Support those ladies in your life that suffer from this disorder. Xoxo #lipedema #lipoedema #lipilegs

Today was my final day of extensive physical therapy. Exactly two months ago (tomorrow) I limped in, with a cane, scared of my future & unable to walk. These two ladies changed my life and today, I WALKED out in tears. They changed my life, finding out that 95% of my weight issues were never my fault for over 25 years. I’ll never be able to repay them for what they gave me. A name for my issue. And they comforted me, for 8 weeks, three days a week, as I struggled to walk again. Lipedema, I might not be able to get rid of you, but with these angels on my shoulders, you really got no shot at winning. #curelipedema #lipoedema #lipedema

Usually, my legs are just an ‘ache’.  I find myself lucky, that only during 'that time of the month’ is when my legs actually hurt to the point of disablement. 

Unfortunately, I have not been that lucky this month.  

First off, lemme back up some…

At work (beginning April 8th), I was sitting in a chair that was not the best - it did not adjust; and for a six feet tall woman, it was practically on the ground.  It started to really hurt my body.  Lord knows the effort standing up is for me with my heavy ass legs - - sitting on the GROUND? Are you kidding me?! I, then, got sick with strep throat.  Once I was able to return to work, a friend provided me with a chair, that sits higher (“tall people chair”, as I call it) - but the bad chair had taken it’s toll - I could barely walk, it was disabling.  Limping, stumbling, and just…struggling in general.

But, it got better with the arrival of my new chair.  Getting up & down was easier, and I slowly started to recover - when…around May 5th - I stood up from my desk and something…popped.  

It was my knee.  And it was LOUD.  Everyone around heard it.  And, since that pop…I have lived in constant chronic pain.  

Chronic pain is one thing.  Awaking, always knowing you’re going to hurt in some way - but CONSTANT chronic pain? That is a different beast all together! Not only are you gonna hurt, but you’re gonna hurt BAD and all over.  It got to where I was laying in bed, thinking 'will I be able to lift my leg today?’  That is a scary feeling.  I have no insurance, and did not get my job until after the deadline for ObamaCare this year.  And this….is rough, man.  

The best way I can describe it, for someone who has no idea, is this scenario:

Imagine you have just run The Boston Marathon - which is around 30 miles.  And you did it with a 'run, walk, run, walk’ method.  Okay, so, you’ve ran it.  You’re physically healthy! You pushed through! You’re good! You’re proud! Good job! ….aaaaand it’s the next morning.

That ache? The soreness? The inability to move without stiffness or pain that your imaginary self is now relating to? THAT is the way I feel 95% of the time now.  

It is miserable.  And it is exhausting.  Gosh, I’m SO tired…

I also have a small bunion on my left foot, caused by my compression.  Which, doesn’t help things at all.  Just adds to my pain, actually.  I’m hoping to be able to afford new shoes for my birthday.    

I’m going to the doctor tuesday.  But, I already know, powering through is about all I can do & cross my fingers that it calms down.   

Lemme just say, the people who live in constant chronic pain - full time, 24/7 - I have a newfound respect for them.  

I want to walk.  I need to walk.  But, right now…walking is a struggle.  A tiring & exhausting one, for sure.  

Flexitouch massages from my core to toes to help move the water from my lymphs. It’s a pain in the ass to get on, but worth the mobility I gain. Although, I will say, I do have a bit of an awkward look when it massages my “whoo haa” area. #flexitouch #lipedema #lipoedema #kickinglipedemasass