Born2lbfat

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

“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.

Lipedema, It Does Exist!

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National Health Blog Post Month – Day 6: Say What?

What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?

The most often heard and reason I advocate and share my story of living with lipedema is that the condition does not exist, that’s is merely an excuse for being fat,  blaming genes. The most frustrating is when those comments come from medical professionals. Even those professionals that had heard of lipedema, knew of it to be very rare, so rare they doubted I actually had the condition. The assumption is I am a non-compliant patient. Even when keeping food and exercise journals, I would be accused of lying, as my food intake would not account for my lack of weight loss.

A few years ago a doctor on Twitter told me I most likely did not have lipedema and lymphedema, “probably not Sarah. those syndromes are very rare & present in early childhood, often accompanied by other birth defects.” I blogged my frustration. It would be such a relief if I really was just fat, that would mean I could actually control my weight through diet and exercise, but the conditions are real, very real.

As I meet more and  more women who have lipedema, and hear their stories of struggle to have medical professionals recognize and diagnosis lipedema I no believe lipedema is a rare disease, I believe it’s merely under diagnosed.

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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!

Kids do not need a letter to know they are fat on Halloween

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There is a woman in North Dakota who feels it’s her duty to save obese children from themselves this Halloween. She has decided to hand out “fat letters” to children to whom she deems are obese while giving candy to the other kids. I am left to wonder if she is doing any diabetes or dental checks on the normal sized kids. After all, the reality is that candy is not “good” for anyone.

But it’s Halloween, it’s the time of year kids to get to dress up as their favorite character and go walk about the neighborhood with their friends. That is unless you are the FAT kid. Then finding a costume, especially of a favorite character, is most likely not going to happen. Definitely, NOT going to fit into a store bought costume. So maybe you’re creative and have the means to create an awesome DIY costume, which I was THAT fat kid a few times. Yes, I wanted to be an alarm clock! What kid doesn’t want to be an alarm clock? No, I wouldn’t have rather been Rainbow Brite or Jem. (of course I would have) But my sister and I were GENIUS and cut out a round piece of cardboard, put some numbers on it, and tethered it around my neck.  I was an alarm clock! Let’s go get some candy!

Trick or Treating was by far the most intense workout I got as a kid. I walked to school every day, but that roundtrip was nothing compared to the Trick or Treat challenge, cover the neighborhood in 1.5 hours. Yes, where I grew up Trick or Treat was scheduled. My friend’s mom led a small group of us around and kept us on task. We only went to houses where people were outside on their porches (wasted no time knocking on doors), we zigzagged across the street, then circled around to the next block. I really should stop and calculate the number of blocks we covered. The entire time it was “go, go, go”, we walked up steps, and up hills. And trust me, every huff n puff moment as trudged along as a clock I knew I was FAT. I didn’t need any well meaning neighbor giving me letter of notification!

But like most other things in my life, I wasn’t going to let my weight stop me from participating. I was not going to let being FAT keep me from enjoying the night out with my friends, trying to accomplish our mission of getting to every house on our route in the allotted time. Honestly, Halloween was NEVER about the candy. There was candy at home, the GOOD candy that my mom bought to pass out for Trick or Treat. If all I wanted was to stuff my face with candy, I could have sat at home and just ate what I wanted. No, Halloween like other holidays is about the experience.

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The experience is same the reason I am excited about participating in Halloween as an adult. As a fat adult the costumes can still be a challenge, but my creativity and DIY abilities have served me well. Yes, I wanted to be Honey Boo Boo…I actually WON a costume contest as Honey Boo Boo! As for Trick or Treat, this year will be the first time in many years I will actually be at home, and live in a neighborhood where there will be Trick or Treaters. I do not have kids and I do not know many of my neighbors. I could easily turn off my porch light and stay inside.  Instead I am excited that I can participate in Halloween, and I ordered toys to pass out.  No candy. I admit I fear being seen as the “fat lady” handing out candy. I also know taste vary so much I could never possibly please all the kids with my choices. Then there are kids with food allergies.  Choking hazards, we used to buy safety suckers to give the toddlers. Also, I just LOVE toys, and I picked out some really awesome toys. I also asked my parent friends on Facebook if they would be upset if their child was given a noise maker? As you can already read I’m putting way too much thought and effort into this….just buy some candy already.

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Perhaps I’m too considerate of other people; perhaps the woman in ND should take a lesson from me. If her concern is really for the well-being of children then there are many better options she could do instead of fat shaming kids. How does a letter telling a parent their kid is fat help reduce childhood obesity? Yet she is STILL handing out candy to other kids, does their health not matter? Also health is not just physical, it is emotional too. Fat shaming kids on a day that is supposed to be FUN, is just mean and will hurt kids not help them. She could donate money to help local parks and recreation center, volunteer for local Halloween carnivals, or organize a Halloween themed fun run/walk for her community.

 

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.