Born2lbfat

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

Living with Lipedema: Why Me?

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logo-bornLiving with lipedema, as with the management of any chronic condition, presents physical, mental, and emotional challenges.

Physically, my arms and legs are heavy and extremely sensitive, the excess weight causes pressure and pain in my joints and tires me out very easily.

Mentally, I struggle with the reality of having a progressive condition to which little is know, and to which few effective treatment options exist and are not readily accessible or require insurance appeals to get covered.

Emotionally, I live in fear of when my next bought of cellulitis will occur. I am judged and stereotyped based on my appearance. I have been discriminated against in the workplace, and been denied proper medical treatment because of weight bias and stigma.

I often ask WHY ME?

A few months ago I made a pretty risky life decision, but one I felt was best for my overall health. I have returned to college and revived this blog and focus more on advocacy. Sharing my story publicly opens me up to comments and feedback, I have been warned the internet is can be a not so nice place. I know this…but I also know that awareness needed and I must continue speak  up.

But WHY ME?

A college friend sent me this message a few day ago  that answered that question:

“Though you’ve always had a voice, we are both great talkers. I believe you have truly and finally found YOUR voice. I think you’ve landed and are doing exactly what you should be doing. Perhaps you were given your conditions so that you can use your ability to talk-and unabashed ability to speak your mind so that those who aren’t as vocal (and I mean that in a great way) have someone on their side to encourage them to speak up when things go wrong.”

 

 

“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 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.

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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.