Born2lbfat

My life with Lipedema & Lymphedema...destined to be fat.

The Bias Among Us – Success?

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This blog topic is LONG overdue, and actually I have so much to say on the topic I feel the need to make it a series of posts. A couple months  ago I wrote about the fat shaming I’ve experienced from strangers, however even more troubling is the weight bias I have experienced within the weight loss surgery community. Let me reiterate I’m not calling any person biased, I’m labeling the actions and comments as biased. I know intentions are often to “help others” but as the person on the receiving end of the comments and actions, I feel it’s my duty to let you know they hurt far more often than help.

The picture of SUCCESS!

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Last month I attended the ObesityHelp #OH2013 Conference in Anaheim, CA, I was a member of the event staff and as so I posted this picture to the ObesityHelp Facebook wall in order to promote the evening’s event. Under the picture I posted “Sarahlicious is warming up the Red Carpet! Are you ready to celebrate your success?” The theme of that evening’s party was “Celebrate Your Success”, I never actually called myself a success, I asked if others were ready to celebrate THEIR SUCCESS. A fellow WLS (weight loss surgery) patient commented on my picture with “success????????????????????????”.

This picture represents MY SUCCESS in several ways. “What? How? You’re still fat????”

  • I am a success because I am alive after surviving a deep vein thrombosis, mini-stroke, and patent foraman ovale (hole in my heart).
  • I am a success because I have maintained 100lbs weight loss for 10 years, was it more, sure…did I regain, yes! But 100lbs loss is still a success in my book!
  • I am a success because I have completed two bachelor degrees and I’m pursing my Masters in Health Law.
  • I am a success because I no longer have sleep apnea or high blood pressure, all other health vital are and have been normal.
  • I am a success because I love myself, and others love me for who I am.
  • I am a success because I share my story to advocate for and help others.
  • I am a success because I stand up against weight stigma and bias.
  • I am a success because I am winning the battle against disfiguring lymphedema and lipedema.

Success is a personal accomplishment, and since pictures are more powerful than words…

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legsafter

However, I should not have to list my accomplishments or pull out my phone to show others pictures to PROVE I am a success. As a community we need to stop judging ourselves and others based on the scale. We need to stop judging, PERIOD.

 

Big Wheels Keep On Turning

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National Health Blog Post Month Day 4 – Training Wheels

Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).

My training wheel moment involves health insurance, of course! It was very much like learning to ride a bike, I even had someone there guiding me, holding the bike seat to make sure I didn’t tip over.

When I was initially diagnosed with lymphedema I was on Medicaid. While it took a couple months for my initial treatment and compression pump to be approved, I never encountered a coverage issue or claim denial. I received unlimited physical therapy sessions, and was in the process of being fitted for compression garments when I got my first REAL JOB with REAL INSURANCE. And then came my first coverage issue and the experience that started me on my journey to advocacy.

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Due to the size and shape of my legs I needed custom fitted compression garments, as it is important that the compression is correctly distributed over the limb. Jobst, the manufacturer of the garments my doctor and therapist recommended requires vendors and fitters (those who would take the measurements) be trained and certified to be sure the garments are fitted and ordered correctly. The average price for a pair of garments is $300 so it is very important they are made correctly, and since I needed two pair (one to wear, as the other is washed/dry) it was important that insurance helped cover the expense. After all, by wearing compression garments I was saving the insurance company the expense of physical therapy and hospitalization due to cellulitis. I was unable to find a DME (durable medical equipment) provider in my insurance network who was certified to handle my garment order but thankfully the vendor I did find guided me through the process to request network gap coverage.

I wish I could remember the employee’s name at Luna Medical, as I owe her a huge THANK YOU! She very easily could have just told me I would have to pay out of network for my garments. I would have known no different, as do most patients. Instead, she explained that since there was no in-network provider within a 50 mile radius of my home my insurance company had to cover an out-of-network vendor at in-network coverage level. She coached me on what to ask for and what to say when I spoke to my insurance company. To prove there was no vendor in network, I called every DME provider within 50 miles and documented whether they sold compression garments, and if they did I would document who I spoke with and verify they were not a custom Jobst certified vendor. It took several phone calls, and finally the insurance company said they needed to speak with my physician. I happened to have an appointment with her the next day so I asked her if she would call them. Knowing there would probably be hold time with any insurance call, my doctor told her staff to take me into her office to call the insurance and once there was a representative on the phone to get her. To my surprise, after reviewing the information I had already provided the supervisor only asked ME a few questions and then approved my request. She said she didn’t need to speak to my physician at all, she already had her signed prescription stating medical necessity.

The training wheels were OFF…and I never looked back!

I followed the same process with the next 3 insurance companies I had and successfully obtained approval for my compression garments. I transferred those skills into reading coverage documents, researching vendors and providers and overall navigating health insurance. I often help friends and family with their coverage questions.  The experience managing my own health insurance coverage  led me to a new career. I earned my BS in Health Services Administration and I am currently pursing a Masters of Science in Health Law.

Although I have been successful in obtaining coverage for most of my lymphedema and lipedema treatment needs, there are still obstacles that block patients from getting the care they need and deserve. That is why I share my story to advocate for the passage of the Lymphedema Treatment Act.

 

NHBPM Day 3: My Mascot!

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National Health Blog Post Month Day 3: My Mascot!
Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?

My Mascot? My friends know my Mascot is my boyfriend. His online gamer name is Mascot, so I often refer to him by that, along with about three other “names” none of which are his REAL name. Mascot, my boyfriend, is also responsible for giving me the idea for my mascot, Princess Peach. When we first met he nicknamed me Peach because my initials, SMB, are the same as Super Mario Bros,  I have blonde hair (when I have highlights), and my real name, Sarah, means Princess…oh and I bake cakes!

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I’m not quite the damsel in distress like Princess Peach, I’m not one to just be waiting around to be saved. I am perfectly capable of playing the game, and facing the challenges of life on my own. However, I do suck at playing video games, so I would have to say I’m just a “support character” in that sense. And like Princess Peach, I do not have very good vertical jumping abilities. But I like a good adventure!

Lymphedema and Lipedema do often “kidnap” me. The pain and swelling associated with the conditions often limit my ability to walk and be as active as I would like. Treatment can be just as  limiting as the conditions. Being tethered to a compression pump for hours a day, or being compression wrapped like a mummy can be both a physical and mental struggle to manage.

I found these toy cars with Peach and Mario and we take them with us on our adventures. We now live 1000 miles apart so Peach and Mario are even more important to me as a way to keep connected. Like the game there are always different types of levels and worlds to challenge and achievements to reach. I have dealt with lymphedema and lipedema for more than a decade, and yet there are always new challenges and new opportunities on the horizon. This blog is one of them. My Mascot, the boyfriend, supports me through the challenges my condition presents. He is my support and my cheerleader, and Princess Peach reminds me of him and the super powers he gives me in life.

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NHBPM Day 2: My Big Caboose – Little Engine Remix

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Day 2 of National Health Blog Post Month and today’s prompt is “The Little Engine” taken from the children’s story, The Little Engine that Could:

Write 3 lines that start with “I think I can…”

Then write 3 lines that start with “I know I can…”

I had to laugh when I thought of the train analogy and my medical condition because my caboose is a much more prominent and powerful train car in my journey. Do trains still have cabooses? For a few years during my childhood I lived near train tracks and I would always love waiting for the end of the train to come by so I could wave to “Mr. Caboose Man”. My caboose (butt) is big because of Lipedema. But that size and weight does not hold me back, instead it is the real source of my power and strength. Living with Lipedema has made me strong, resilient, resourceful, and compassionate.

sassy

With that said…here is my Big Caboose – Little Engine Remix

I think I can be a catalyst for change.

I think I can encourage others to be their own advocates.

I think I can change society’s perception of obesity by sharing my story.

I know I can be myself.

I know I can survive.

I know I can win most battles with health insurance companies.

What do you THINK and KNOW you CAN do? What is your source of power and strength?

My Abnormal Photo Shoot

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For me, not smiling for a picture is definitely not normal. But the real abnormality of the photo shoot was ME. I replied to a post looking for individuals with abnormal appearances for a magazine article. Due to lipedema my arms and legs are abnormally disproportional to the rest of my body. While most people try to hide or cover up the parts of their body that do not meet a certain societal level of acceptance, that is not an option for me so I choose to just be comfortable in my own skin, all 400lbs of it.

Trust me being comfortable in my own skin is much easier said than done. There is no physical comfort living with lipedema. Every inch of my arms and legs are sensitive, and the slightest touch results in bruising. In addition, the excess weight makes simple movements much more tiring.  Imagine having to do your normal daily tasks with 5lb sacks of flour attached to each arm, and a toddler clutched to each leg? Then when you need to stop and rest, people think you’re just “being lazy.” Standing for any period of time is exhausting, sitting is a bit better but gravity still affects the pooling of lymph fluid in my legs causing painful swelling, so laying down must provide the only real relief, right? Not exactly, it’s hard to be comfortable laying down because the abnormal size and shape of my hips and legs makes finding a restful position difficult.

However, rarely do I complain, because the abnormality of  lipedema has become my new normal. I have no control over the physical aspect of my disease. So I choose to make the most of what I can control, and that is the mental aspect. Which is the focus of the magazine article. Psychology Today is featuring a “story about the experiences of those with physical differences—and how, on both a societal and individual level, we can overcome negative or prejudiced responses.”

So back to the photo shoot. I realized that I had not had professional portraits taken since my high school senior pictures. I asked if there were any guidelines for what type of clothes to wear and was told nothing specific. So I did what probably few other females would do, I picked a nearly three year old dress out of my closet to wear. The dress looks nice on me and shows my arms and legs. The morning of the shoot I woke up, fixed my own hair and did my own make-up. I kept thinking how most people with bodies the size of mine hide from the camera, and when they are in a few pictures they delete any shot they think is unflattering. Here I was volunteering to have my pictures in a  national magazine and I’m wearing an old dress and doing my own hair and make-up.

The photographer arrived, moved some living room furniture around and set up his equipment. I was ready for the my close up! Then came the shocker and most difficult part of the photo shoot…I was told not to smile. WHAT? Me. Not. Smile. That’s just soooo abnormal??? And it’s even harder not to smile when you’re trying to NOT SMILE. And of course the photographer and I struck up a conversation and well since I’m so amusing, I smile and laugh a lot during conversations. I will not know which poses were selected for  until the article comes out in the November edition, but I know the real Sarah shines through as always. Although my normal persona is fun, happy Sarah, anyone who knows the real me knows my strong and confident side…and smile or no smile…I’m still Sarah.

*Update* See the final picture in My Story in Psychology Today

Tips for Effective Fat Shaming

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Before we begin today’s lesson, I feel compelled to point out that a recent study indicates that fat shaming is actually NOT effective in motivating people to lose weight.  That, in fact, shaming has the opposite effect. However, some people are set in their ways and cannot resist the urge to prophesize their knowledge to others who are “worse off”. So before you embark on such divine matters of “health”, please consider the following tips:

1. Extinguish your cigarette – Nothing is more annoying than having someone fat shame you while blowing smoke in your face. So please do not approach me about my weight, and how you can help me “get healthier” while smoking. Yes, it’s happened to me. My boyfriend and I were at the beach, enjoying a cool evening watching the waves and the people roll by on bikes and skates, when I was approached by a woman smoking.  At first I thought she was going to ask for money, so I clutched my purse closer to me. Instead she tells me how she has just finished her personal training courses and wanted to know if I would like to work out with her, she could “help” me lose weight. She “understood” how threatening the gym might be to large women, she’d make me comfortable with exercise.

Without missing a beat I reply “I’m not sure how much I’d trust health advice from someone who smokes.”

“Oh, I know, I’m trying to quit” she says as she quickly tries to extinguish her cigarette.

It’s not that her knowledge is invalid because she smokes, it’s the fact that she approached a stranger about their weight, assumed I did not already exercise, which I did and did so letting her own poor habits show.

2. Step away from the bar – Ok, in his defense he was stepping away from the bar, well stumbling away. A co-worker and I were having dinner at a steakhouse when this drunk man stumbled up to our table and muttered “You’re probably going to tell me to f*** off, but I just HAVE to tell you…PLEASE STOP EATING, you are killing yourselves. I work at a hospital and I see people like you die every day”.

He did in fact work at a hospital, or at least he was wearing a polo shirt with his name and the name of a local hospital.

My co-worker was stunned and horrified. I was ME, and replied “YES, I am going to tell you to F***OFF, you do not know us or the fact I’ve lost over 100lbs already.”

Fellow restaurant patrons were also horrified by his behavior and quickly approached him and escorted him outside. Then the manager came to the table and apologized for the man (who was a regular bar patron) and comp’d our meals. Ironic.

3. Do not interrupt my workout – Of course someone working out at the gym must be in need of unsolicited advice about how to lose weight. Right? But some people are just overly persistent or working for referral money. Either way it is annoying. As Susan Powers would say “Stop the INSANITY!” There I am, at the gym, ear buds in listening to Destiny Child’s “I’m a Survivor”, when I notice this woman waving at me. I did not recognize her as someone I know, but I take off my ear buds and say “hello”.

She steps closer, “Hi, are you considering weight loss surgery, or have you recently had it?”

SERIOUSLY?  I reply, “I’ve already had weight loss surgery.”

“When?”

“2003, I used to weigh more than 500lbs, I have Lymphedema”…trying to think what else can I say to get her to let me get back to Beyonce, Kelly and umm (oh hell anyone remember the 3rd chick from Destiny’s Child?) Michelle! Thanks Google.

She replies, “Oh I work for a doctor, have you considered revision as an option?”

I tell her that I am very involved in the WLS Community and I am well aware of the options available.  I’m too nice, I should have told her how inappropriate her approach and conversation were, despite intentions do not approach strangers about their weight.

She of course was a WLS herself, something about having WLS or losing a massive amount of weight through whatever programs makes you a SAVIOR. I must not have said enough Hail Mary’s because I never got my wing and halo. Well I got my batwings, but not my angelic wings and official orders to go out and SAVE people.

I understand the urge, really I do, I have the same feeling when I see someone I believe is suffering with Lymphedema in their legs, and having gone undiagnosed for so many years I have good instinct to think they too might be undiagnosed.

However, I’m quite sure no one is unaware they are fat? If they are unaware, that is a conversation for a family member, close friend, or doctor to have with them regarding their health. It’s not for a stranger to initiate.

If you are concerned about the health of a friend or family member here is an article about how to approach that conversation.

All EARS for #OH2013 in Anaheim

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Ready for #OH2013

Ready for #OH2013

Getting ready for more education, friends, and fun at the ObesityHelp 2013 National Conference in Anaheim, CA, October 4th & 5th.

Looking forward to hearing Dr. Ayra Sharma speak, and spending more time with my pal Eggface!

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I’m also hoping to have time to visit with my college mentor who now lives and works in California, the man truly changed and saved my life!

There is still time to join me in Anaheim! This will be my 8th ObesityHelp Event!

I like to stay active with ObesityHelp and the weight loss surgery community because I’ve met many fellow Lipedema and Lymphedema patients who have had or are considering weight loss surgery and it is great to meet others with similar experiences.

Dancing for Dollars! Support me in the Walk from Obesity!

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 No tutu until I reach my fundraising goal of $1000!

 

 

If I reach my goal of $1000 in donations by the morning of the walk, August 18th! I will WALK IN MY SWIMSUIT (and tutu).

YOU Can Still Be a Part of #YWM2013 – Join Us!

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oacsiteIt’s not too late to  be a part of Obesity Action Coalition Your Weight Matters Convention!

Registration will be available on-site August 15th. Join us for a day or the entire event.

Can’t join us in Phoenix?

No worries there will be 5 sessions  live-streamed via YouTube!

Here is the link to access all of the live-streamed educational sessions: 

http://www.ywmconvention.com/ywm2013-live-stream/  

During the Teaming-Up to Tackle Obesity event, those who can’t attend will also be able to ask questions during the Q&A using http://www.twitter.com/obesityaction and our official #YWM2013 hashtag.

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This is a great opportunity to experience OAC and get a glimpse of what the information and resources they offer.

Check out my Top 5 Reasons YOU Should Attend #YWM2013 and watch for my LIVE updates from the convention on Twitter, Facebook, and Instagram.

Lululemon cannot cover my @ss, and the sky is blue.

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This week another clothing retailer revealed they do not and will NOT make their clothes available in plus sizes and the media exploded in outrage. How is this new?

Did we all forget the 5-7-9 store? (I wonder what the vanity size equivalent would be.)

This is nothing new; no business can cater to everyone. It’s just not a smart business strategy.

I’m especially NOT upset that I will never be able to fit into a pair of Lululemon yoga pants, despite my affinity for yoga pants. It is obvious Lululemon is not capable of handling the quality needs of plus size women. In case you forgot they had to recall yoga pants due to sheerness. Uh, no thank you.

Making and designing Plus Size clothing is more than just taking a normal size item and making it bigger. Plus Size women have different body types, curves in different places, and different quality needs. Even among the clothing stores that do cater to Plus Sizes, there are different styles and different fits…Torrid, to Lane Bryant to Catherine’s.  All have a very different style of clothing, and I notice a different in “fit” among stores. Junonia is a company that specializes in active clothing for Plus Size women, more than just yoga pants, but swimwear and outdoors clothing.

Wait, what was that? There are stores that cater to ONLY plus size women?  How dare they not make their cute available to normal size women?  I am not being sarcastic. Years ago I worked at Lane Bryant, and we often had normal sized women walk in asking for the shirt in the window in their size, and we had to break the news that the smallest we carried was a 14. And remember that’s a Women’s size 14, not a Misses 14. The fit will be different.

What makes me angrier than retailers who refuse to offer Plus Size clothing, is the treatment often received from the retailers who proclaim to cater to our Plus Size needs. As a plus size woman I realize I am going to pay more for my clothing, I do not think it is too much to ask that those clothes meet the quality needs of plus size clientele. Underwear should withstand more than 1-2 wearing. T-shirts should have appropriate designs.  I opt to ask that Plus Size retailers do a better job at serving their clientele than demand all companies make ALL sizes. The latter is not a reasonable expectation. I’m quite sure the Tall and Petite women out there can echo this. Plus size is not the only specialty size left out by the mainstream designers.

Are we going to demand that Victoria’s Secret start selling men’s products? Oh wait.  Victoria Secret is another store that does not provide Plus Size items.

I mean really I could list an entire MALL DIRECTORY of places that do not offer plus sizes. Why is the outrage only over those who actually admit it?

I think we all need to take a deep breath.

Calm down.

And redirect our energy towards other worthier causes. I choose weight bias in healthcare and employment.