My life with Lipedema & Lymphedema...destined to be fat.
ObesityHelp 2013 National Conference – KEYNOTE SPEAKER: DR. ARYA M. SHARMA
I am looking forward to the ObesityHelp 2013 National Conference this October. I have been a member of ObesityHelp.com for 10 years and this will be my 8th ObesityHelp Conference. I have learned so much through my experience with ObesityHelp, and met some AWESOME people like Melting Mama and Eggface.
I wish I could bottle my confidence and have Dove sell the sh!t
They say women will argue about anything, and that was evident this past week as an online battle brewed after the release of Dove’s Real Beauty Sketches video. I wanted to write about the video sooner, but I’m glad life got in the way and I waited, because the chatter and discussion that has occurred makes me wonder, why do we care so much about what other people think of our looks? Why is there so much talk about the definition of beauty when everyone has different tastes and preferences?
When I first saw the Dove video I shared it on my Facebook page and commented that my picture on the left would probably look BETTER than the one described by the stranger. I’m beautiful, I know I’m beautiful and that is all that matters…to ME. Do I think everyone thinks I’m beautiful? No, I’m not vain. I’m realistic. My features do not appeal to everyone, but I learned long ago that I can only control what I was given and trying to please or impress EVERYONE is not possible, so I focus on what makes ME feel beautiful and not worry so much about what other people think of my appearance. Especially people whose opinions mean NOTHING in my daily life.
OMG, look at her socks!
Yes. Socks. It was the first week of my Sophmore year in high school, I probably weighed 350lbs, if not 400lbs. Wearing stylish clothes was not an easy task, options were limited due to my size, and family income. However, my mom always made sure we had a few new outfits to wear back to school. This day I was proudly wearing navy slacks (securely pegged and cuffed), and a rugby type shirt with navy, green, and hot pink stripes. I loved my outfit, I thought I looked stylish. We had to order the pants through a special Plus Size catalog and I was relieved they fit! During history class I was talking with my friends and overheard “oh my god, look at her socks” and noticed the girl was pointing my direction. I thought, what’s wrong with my SOCKS? They are JCPenney socks! They are just typical white socks??? I was so proud of my outfit, yet this girl found SOMETHING she didn’t like about it and made negative comment.
At that moment I realized no matter how hard I might try to impress others there will always be someone, or something negative to be said. I was not bothered by the comment, actually the rest of the year my best friend and I had a running joke when we saw this person, my friend would say “Sarah, are your socks ok?” Really, no tears were shed over someone judging my socks.
And from the other perspective, I do not give much thought to the positive comments and compliments I receive. Why? Because people often lie just to make people feel better and I do not need boost myself up on fakeness and lies. Growing up as an obese child I heard the phrase “You have such a pretty face, it’s such a shame.” Wait? What? Was that a compliment or a put down? What’s a shame? It’s a shame that I have a pretty face? Or it’s a shame that I’m fat?
Of course not everyone who gives a compliment is lying. And I often struggle to accept compliments, and not question the intention of the person giving it. It is hard. What I am talking about it not easy, even for me. The looks I get from others do sting, being judged negatively in the workplace because of my appearance hurts beyond emotionally but financially.
I learned not to value or devalue my self worth based on what others thought about me…period. I do not think I’m beautiful, I KNOW I’m beautiful. I am confident, smart, funny, and I have pretty eyes, a bright smile, and cute dimples. Those are the FIRST things I notice when I see a picture of myself. If prompted to find negatives I could comment about the break-out on my chin and my overgrown eyebrows. It’s funny, I took this no make-up picture specifically for this blog post to show the REAL me, then I realized I was still wearing my blue contact lenses and promptly took them out and retook the pictures. The REAL natural ME.
Saying I do not care about what others think of my appearance does not mean I do not take pride in how I look. There are also times when appearance matters, such as, work or special occasions. Self-confidence and pride in oneself allows for the inner beauty to shine through.
Self confidence is REAL beauty.
Of all the beauty posts I’ve seen in the past week, Colleen Clark comic gets it right: Our bodies do not define us.
http://youtu.be/ZQhj_6juTNE
My thoughts on the YWM Inaugural Convention, why I chose to attend and how much I enjoyed the experience.
Join me this year in Phoenix: http://www.ywmconvention.com/ Hurry, register early to save and be entered for a chance to win a FREE three-night stay at the Arizona Grand Resort & Spa.
Finally, LIPEDEMA mentioned on a national talk show! Thank you The Doctors!
For so many years I’ve seen lipedema and/or lymphedema patients on talks shows about “obesity” and the host and doctor totally ignore giant legs and hips! This doctor GETS it!
Yes, lipedema patients will still have diseases because of our weight, carrying around extra weight is hard on the body.
I love Mikel’s attitude! I want to meet her when I’m in L.A. this October!
Read the article online – The Part I Want: Advocate
I’m a centerfold! Well close enough for me! A couple of months ago I had the honor of being asked to write an article for the new OAC Members Matter section of Your Weight Matters Magazine. Anyone who knows me in person knows I am not shy about telling my story, or any story really. However, I was unprepared for the emotional journey writing this article took me. The hardest challenge was editing down a focus, as I have been obese all my life, I have many stories to share. After talking through ideas with Kristy Kuna with OAC, we decided on the issue that really spurred my involvement with the Obesity Action Coalition: Weight Bias in the Workplace. Unfortunately, I have experienced weight bias in the workplace twice in my life, yet each time I have taken what at first was a negative experience and turned it into a positive outcome.
A subscription to Your Weight Matters Magazine is included with an OAC Membership, so I encourage you to join today!
Many women hate their legs, especially their thighs. Too wide, too saggy, too many spider veins, too white…no shorts…no swim suits. Any negative feelings I have towards my legs are not based on appearance. Only time I “hate” my legs are when they are sore and painful, or have a ragging case of cellulitis. As far as appearance, I am PROUD of my legs, they show progress, they are a symbol of a health issue I overcame and successfully maintain on a daily basis. My legs support me, and I am so much stronger because of them.
This picture was taken the day I was diagnosed with Lymphedema in December 2001.
This picture was after years (at least 7 years) of MLD (Manual Lymph Drainage) and compression wrapping. Now maintained by wear daytime compression garments.
It happened again. On the way home from the gym I stop at the grocery and someone makes a rude comment. Last time it was a woman in an electric cart laughing at my “cankles”. Yes, I have cankles, and thankfully these cankles are able to walk my nearly 400lbs body around the store and I do not need the assistance of a cart. For the record I have never used an electric cart, not that I never “needed” one, but they scare me and I’d either not go shopping or I’d endure the walk and rest myself against a normal shopping cart.
This time I didn’t hear the comments, my boyfriend heard and saw the giggles. He was far more bothered by it than I am. He was actually so bothered than he was unusually quiet during dinner. I even asked “what are you thinking about?” and he declined to say. On the way home he finally came clean. It seems the three tweens who were standing in the checkout lane and quickly excused themselves as got in line, huddled in the next lane and giggled about “her”.
It happens more times than I care to admit. I’ve been asked how am I so strong to not let that bother me. Well, of course it bothers me. Every time I get a stare or hear a giggle it stings, but only for second. After that initial sting, I remember that these people don’t know me. They don’t know what disease I have, how hard I work to fight it, or how much I’ve overcome in life.
Maybe I should tell them? Nah, I will save my energy for my priorities in life and just blog about it here.
I will say I hope those young ladies grow up to have as much self-confidence and strength that I have to deal with life’s challenges.
My story:
I was diagnosed with bilateral lower extremity lymphedema in December 2001. From 2002-2004, I received manual lymph therapy and compression wrapping to reduce the swelling of my legs. During this same time I was hospitalized approximately 8 times for cellulitis, had a medi-port placed for IV antibiotics, and had weeks of home health care three different times. The cost of this care was hundreds of thousands of dollars. During most of this time I was covered by Ohio Medicaid. However, my last major infection in September 2004, which was accompanied with a deep vein thrombosis and required two weeks in the hospital, was covered by United Healthcare, which I had through my new employer.
In October 2004, I began three months of manual lymph therapy and compression wrapping. I was limited to 20 sessions of occupational therapy during my plan year. However, January 1st a new year began and I would have a new set of 20 sessions. There was a two week gap. Compression wrapping requires continued wrapping to avoid any set-backs and flare ups. Two weeks without being wrapped would undo the previous 2 1/2 months of progress. And yet, the insurance company refused to authorize the additional visits for the plan year.
After I recovered from the set back from the gap in care, I reached a point where custom fitted compression garments were ordered. Once the compression therapy reduced the size of my legs as much as possible, the compression garments would help maintain the size of my legs by reducing the daily swelling. Because of the odd shape of my legs, the garments had to be custom fitted, so the correct level of compression was provided. The average cost of a full pair of garments is $1000. Typically, garments need replaced every 6 months.
Now compared to the hundreds of thousands of dollars I previously racked up in medical bills, one would think $2000 is a much better deal. Especially given that I would have some responsibility to pay a portion of the $2000 through my co-pay or deductible for Durable Medical Equipment under my insurance plan. In the business sense, garments are a much better option than numerous hospital stays and costly medication for cellulitis.
And yet, every year I have to fight my insurance company to get my compression garments covered.
This bill is very much needed. It’s a shame it will take an act of Congress to make the industry understand that prevention of complications is less expensive than treating the complication. I know as a patient, no matter how uncomfortable compression garments are to wear some days, I’d much rather wear my garments than to suffer a case of painful cellultis.
“I encourage you to contact your local Representatives and Senators. Urge them to co-sponsor H.R. 4662 and to introduce a similar bill in the Senate. Stress the fact that this bill is projected to save hundreds of millions of dollars every year in avoidance of costs of treating preventable lymphedema-related cellulitis. This is a quality of care issue affecting insured patients and is complementary to healthcare access issues. Time is of the essence for you who have had difficulty in obtaining proper treatment for your LE. We may never have a better opportunity!
You may find your Congressional representatives by going to http://www.contactingthecongress.org and entering your address.”