Born2lbfat

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

Living Life 11 Years Post Weight Loss Surgery

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Today marks 11 years since my weight loss surgery, so of course that deserves a blog post. As most post-ops would I delved into my computer files to find a good “before and after” picture. Yet, I seem to have many after pictures, actually I have many before pictures as well. April 7, 2003 wasn’t the beginning of my journey, I had already began years earlier to improve my health, surgery was merely a step in what was and continues to be an incredible unpredictable journey.

In the past 11+ years my life has been filled with moments of great accomplishments and moments of even greater challenges. And I can honestly say I would not change one moment of my journey so far. I am healthier, wiser, happier, funnier (is that possible?), cuter and definitely stronger!

So as I’m scrolling through various pictures of me at different stages of my journey, highest weight, pre-op weight, pictures of my legs, lowest weight, pre reconstructive surgery, slight regain, a lot more regain.

Then it hit me. No, no, no. No before and after pictures!

First of all this is my LIFE, there is no before and after, it’s always in progress. I’m in the midst of completing a Masters in Health Law, I have two new articles about my Lipedema and Lymphedema Advocacy scheduled to be published in the upcoming months, and I have five conferences on my schedule for 2014.

Second, my entire message is that weight loss surgery success is not about weight, not about a number on the scale, not about how I looked then verses how I look now, it’s about health.

My journey is not about how I look, it is about how I’m living!

But Sarah according to the WLS rules you MUST post a picture on your surgiversary!

Fine! Here you go…a more realistic BEFORE….and to be continued…..

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I Am Thankful For My Fat

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National Health Blog Post Month Day 28 – A Time to Give Thanks

What’s the one thing you’re most thankful for? Write a list of three things that you’re thankful for, excited about, or inspired by. 

I am most thankful for my fat. My fat is a part of who I am, more than just physically. My fat has made me stronger, kinder, and a more resourceful person. My fat makes me unique. Despite the challenges in life having Lipedema, and the excess fat, have presented I take every moment as a learning experience and I continue to move forward living the fullest and healthiest life possible.

I am most excited about 2014. I plan on attending several conferences, many to which will be first time conferences for me and I look forward to the information and opportunities.

I am most inspired by the new friends and fellow Lipedema patients I have made this past year.

My Story in Psychology Today

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My story is profiled in the current issue of Psychology Today (December 2013), as part of the article Do I Make You Uncomfortable?

This is the article for which I had My Abnormal Photo Shoot. In late August, I replied to a Facebook notice shared by the Obesity Action Coalition. Being a member of the OAC has provided many opportunities to share my story, and thus spread awareness about lipedema and lymphedema.

Does my fat make you uncomfortable?

According to the article that is YOUR issue, not mine. I knew this already, but I admit I misunderstood the article concept as originally told to me: “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.” I thought the article was going to focus on those of us on the receiving end of the negative and prejudiced responses. Through my own sessions with a psychologist, I learned I cannot change other people’s behaviors, I can only control my own reaction. To my pleasant surprise the article’s focus is on the response people have when they see a person with a physical difference. It is a refreshing change for the discussion to address why some people have such adverse reactions to ME, since it is usually just accepted that it’s normal for people to act in such ways towards people who are abnormal. And yet, it’s not normal. Not everyone who sees me has a negative or prejudiced response, if that was the case I would not have so many supportive friends. So what does prompt the negative response?

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Protective Prejudice

The theory discussed in the article is that people’s negative and prejudices reactions towards physical difference is rooted in an immune response and survival instinct protecting against disease. Interesting idea for sure! And does go along with the idea that people project their own insecurities towards me. The personal stories shared tell of instances for which we have experiences negative reactions based on our appears, mine included the now famous “check out them cankles” incident. It is inspiring that the other individual profiled in the story have the same positive attitude and outlook as I do and the hope that by sharing our stories we can help others.

Research suggesting that prejudice is a flexible trait abounds — and simply being aware that it’s not fixed can significantly reduce discriminatory behavior. Accepting that we all hold negative associates and becoming aware of the one we automatically make are also critical steps in the process of counteracting our biases. So, too, is encouraging people to talk about their negative perceptions.

My abnormal appearance is beneficial in life, it serves as a screening process. If people do not want to get to know me because of my looks, their loss. Now sure, it hurt when I experienced weight bias in the workplace but obviously that was not a company whose values align with mine.

Leave me a comment:

Have you read the full article? Share your thoughts.

Does my appearance make you uncomfortable?

Have you ever experienced a negative or prejudiced reaction to your appearance?

“You need to get the Lapband surgery.”

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In her Hot Topics segment (at 8:30), Wendy Williams discusses Ruben Studdard’s performance on The Biggest Loser then suggests he get Lapband surgery.

First, I think it’s completely out of place to be discussing his weight on her show in this manner.

Second, Wendy Williams got her MD when?

Third, the decision to have weight loss surgery is a personal decision that should be made with counsel of one’s own physician not a talk show host. There are also more options for weight loss surgery than Lapband. There are RNY gastric bypass, vertical sleeve gastrectomy, and duodenal switch.

Earlier in the segment she made comments about how Gov. Christie did not appear to have lost that much weight since his Lapband surgery. (3:45) “Can I just talk about this surgery he got for weight loss? What happened…like I don’t notice the difference.”

So Wendy, you talk about Gov. Christie for not losing enough weight with Lapband surgery, but you suggest Ruben should have the same surgery to help with his weight???????

I’m aware that Wendy Williams is know for dishing on celebrity’s’ looks and that she too has her own critics, however, the line here is crossed when she offered medical advice.

Sarah for President!

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National Health Blog Post Month – Day 5: Election Day!

 

Votes are in-you won! If you got elected President, what are the 3 changes you would make to healthcare?

  1. I would create a single payer, government based system of healthcare. The best healthcare coverage I ever had was Medicaid. Seniors love their Medicare. Our health should not be profit based.
  2. I would increase funding for genetic and stem cell research to improve disease prevention and treatment. Lipedema is a congenital condition for which the gene has yet to be identified.
  3. I would mandate all adults to have a Living Will, at age 18 require the advisement of rights and assistance in creating a Living Will of end of life wishes. Can be reviewed and changed as needed, complete renewal at retirement age.

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I might not be able to enact those healthcare changes but I will continue to advocate for the passage of the Lymphedema Treatment Act and the Treat and Reduce Obesity Act.

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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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 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.

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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?

November Is National Health Blog Post Month

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November is National Health Blog Post Month and Wego Health is providing daily prompts. Since I’ve been slacking recently at posting and even had my blog called “the inconsistent blog” I thought participating would be beneficial to me and my readers.

This year there will be Favorite Friday posts, and today is both the FIRST post of the month and a Favorite Friday!

Nov. 1 Favorite Fridays

Tell us what your favorite health apps are and how people can find them.

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GoodRx (FREE) – My number one FAVORITE health app is GoodRX. It is an app, and a website, that helps you locate the lowest price prescription medications in your area AND provides discount coupons for many of the medications. I first heard about this app on NPR. I have used the app a lot recently as I have been in transition between health insurance coverage and do not have prescription coverage right now. I just present the coupon information to the pharmacy and they enter it and I get the discounted price. The price has not always been accurate, but within a few dollars, and still MUCH lower than original retail price.

MyFitnessPal (FREE) – This app is great for tracking food intake as it has a very diverse directory of foods, and a bar code scanner for foods that are not already in the system. Having been tasked with documenting my food intake at various points in my life it’s great to no longer have to keep a little notebook with me, or try and remember every bite at the end of the day. The app also tracks activity, and weight, and provides you an estimate daily calorie goal based on your weight goal (loss or maintain). MFP also syncs with many other fitness apps and devices.

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Health Insurance Carrier App (FREE) – Apps vary by company but most major health insurance providers  now have mobile apps. I find the apps most helpful in locating a provider or facility. How often are you in your doctors office and are referred for a test or to see a specialist and you have no idea if they accept you insurance. With the app you can quickly check the directory right from your phone! I have personally used the Humana app, but I went ahead and found the links for other companies: BCBS, Aetna, Cigna, United Healthcare.

This prompt made me realize I’ve NEVER even checked to see if any lymphedema or lipedema related apps exist. I found LymphTracker ($.99), which helps track measurements of your affected limbs. This can be very helpful, unfortunately when I went to purchase the app on my iPhone it said the app was no longer available. It would also be beneficial to have an app to locate lymphedema therapists, compression garment vendors, etc in your area.

Have you used any of these apps? Tell me if you found them helpful! Also if you have a favorite health related app share it with me in the comments!

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.