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Born2lbfat

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

NHBPM – Three Truths and a Lie

November 18, 2013 by Sarah Bramblette 3 Comments

day18

National Health Blog Post Month Day 18 – Three Truths and a Lie

Tell us three things that are true about you, your condition, your Health Activism, or your life. Now tell us a lie. Do you think we will be able to tell the difference?

1. I’ve been told “you are what we read about in medical books.”

2. I once showed up in person to my insurance company’s office to check on the status of an appeal.

3. The sight of needles makes me squeamish.

4. Anytime I get new insurance coverage I request a copy of the Plan Document and I read it thoroughly.

Take guess…which one is the lie?

shades

Filed Under: Blog Post, Living with Lipedema & Lymphedema Tagged With: lipedema, lymphedema, National Health Blog Post Month, NHBPM, obesity, Wego Health

Treat the Patient, Not the Obesity

November 18, 2013 by Sarah Bramblette 3 Comments

scale

As part of ObesityWeek 2013 new guidelines for the treatment of obesity were released. The media has stated the guidelines are encouraging doctors to “get tough”, “be aggressive”, “take serious action” when treating obese patients. The actual guidelines do not use such harsh language, and it is bothersome that the media puts the “let’s get tough on the fatties” spin to the stories. As a patient who is obese, I believe the guidelines leave out two very important pieces to the treatment of obesity: identifying the cause of the patients’ excess weight and ensuring healthcare offices can adequately access and monitor obese patients. 

Focus on the patient, not their weight.

I have always been frustrated by doctors who blamed my medical issues on my weight, yet never offered real options for losing weight. So the suggestions that doctors get serious about a patients weight and go beyond the obvious “you need to lose weight” and actually offer and prescribe nutritional counseling and activity for how to lose weight will be helpful to many patients. However, I believe dietary changes and exercise should be recommendations to ALL patients with heart disease, diabetes, high cholesterol, and high blood pressure. While excess weight can increase risk for these conditions, they are not exclusive to individuals with a high BMI.

What causes obesity?

Diagnose before offering treatment. There are many conditions and medications that can cause excess weight, doctors need to thoroughly examine the patient and address the actual cause of the obesity.

Yes, this is where I get on my Lipedema and Lymphedema soapbox. Both conditions are noticeable to the trained eye, the problem is there are not enough physicians who are trained to make a proper diagnosis. Instead, many patients, such as myself, are told to lose weight and when we do not lose weight as expected we are deemed non-compliant. And that label affects the way we are treated for all health issues. All my health vitals are normal, and should indicate that I live a somewhat healthy lifestyle, however there is still a focus my weight. For years, my weight increased while the actual cause of my weight, Lipedema, was not diagnosed and progressed to a stage further complicated by the development of Lymphedema. While the my health vitals, were normal, the Lipedema and Lymphedema was very much affecting my overall health. I developed severe cellulitis, and often required hospitalization for IV antibiotics and eventually needed a medi-port. During the hospital stays I contracted MRSA in the medi-port, that goes directly to my HEART. This greatly affected my mental and emotional health, as did the limitations on my mobility the conditions caused and the frustration of not getting any other explanation for what was happening with my legs than “it’s your weight”.

Accuracy is VITAL

As much as I was told the issues with my legs were because of my weight, the fact was my weight was unknown. The doctor’s office did not have a scale that could weigh me, nor did she attempt to locate a scale that could. On my own, I went to a local junk yard to weigh myself. No patient should have to make the effort to get their own vital health statistic. While that was ten years ago, I find today’s doctors offices are not any better equipped to care for patients with high BMIs.

In order for doctors to take obesity more seriously, they will need to have an accurate weight for patients. Currently, none of my doctors have scales to weigh me, yet, they all document the known incorrect weight. One office’s scale has a 300lbs limit, but it does at least register 328ish when I step on it. So the nurse documents that as my weight, even though I tell her that is not correct, and verbally give her my weight from my home scale. Again, this isn’t an issue in just ONE office, I encounter this problem is probably every doctors office I visit, expect for the bariatric surgeons office.

After the game of guess my weight, comes the torture of having my BP checked. Yet, another VITAL health statistic that is often not correctly taken nor monitored in obese patients. If the BP isn’t taken correctly, it is not an accurate reading, and thus monitoring inaccurate data serves no purpose. The blood pressure cuff needs to properly fit the patient’s arm. Cuffs that are too tight will give inaccurately high readings. Doctors’ offices need to have large cuffs, even thigh cuffs available, and staff need to know the where the cuffs are kept so patients can have their BP taken correctly.

Also, stop relying on BP machines, they are not accurate, especially on FAT arms. Every time my blood pressure is taken with a machine, it has to inflate twice then reads high. Again, I will let the nurse know the information is not correct, yet it gets documented in my medical record. My last employer’s wellness program was told I had high BP and I was put on a “plan” to reduce it”, which thankfully I did rather quickly by having my regular doctor submit my REAL blood pressure, which she gets by manually taking my BP using a thigh cuff. In addition, staff should be trained on how to take a blood pressure reading on the lower part of the arm, in case no cuff is available to fit the upper arm. Also, wrist blood pressure cuffs should be utilized.

Better scales and larger BP cuffs are not expensive items for doctor offices to purchase, and yet are very important tools to properly diagnosing, monitoring and treating patients.

Does your primary care doctor have a scale to weigh you? Share with me your experiences in the comments.

Filed Under: Advocacy, Blog Post, Obesity Tagged With: advocacy, lipedema, lymphedema, morbid obesity, obesity, obesity treatment, obesity week, super morbid obesity

Lipedema Treatment: Our Only Alternatives

November 13, 2013 by Sarah Bramblette Leave a Comment

day10

National Health Blog Post Month Day 10 – Alternative Medicine

Write about alternative treatments and regimens and tell us how you feel about them. What do you support? What is crazy? Have you used any?

Lipedema does not yet have a diagnosis code, let alone a known cause or effective treatment options. Lipedema is an abnormal accumulation of subcutaneous tissue aka FAT. However, lipedema fat cannot be reduced by restricted diet or exercise. Treatment options focus on the inflammation and swelling associated. Some lipedema patients, such as myself, also development lymphedema. Compression therapy has done wonders for my lymphedema, since it pushes the fluid out of my legs, however compression can help maintain lipedema progression the effectiveness is not as successful. There is a promising information for liposuction for the treatment of lipedema, while it doesn’t not address the “cause”, it does relieve the symptom. Currently, the most knowledgeable and experiences surgeons performing liposuction on lipedema patients are in Germany. There are plans for US doctors in New York City to begin performing liposuction for lipedema in 2014. The next challenge will for us to get insurance to cover the treatment, I am currently advocating for passage of legislation to cover compression therapy for lymphedema.

Reid Sleeves - Nighttime Compression

Reid Sleeves – Nighttime Compression

Current treatments lipedema patients use to reduce/manage symptoms:

  • Manual Lymph Massage
  • Compression Wraps
  • Compression Pumps
  • Compression Garments
  • Compression Sleeves
  • Supplements
  • Lymphatic Brushing
  • CVAC
  • Vibration Plates
  • RAD Diet
  • Detox Bath Soaks
  • Liposuction

Each of these options deserve a blog post of their own for explanation, I will have to expand on them at a later date.

If you are a Lipedema patient, share with me what options you have tried and if you found any relief.

Filed Under: Blog Post, Living with Lipedema & Lymphedema Tagged With: health insurance, lipedema, lipoedema, lymphedema, lymphedema treatment act, National Health Blog Post Month, NHBPM, Wego Health

My Story in Psychology Today

November 11, 2013 by Sarah Bramblette 6 Comments

psychtoday

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?

psychtodayjeff

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?

Filed Under: Advocacy, Blog Post, Lipedema and Lymphedema, Obesity Tagged With: advocacy, awareness, bbw, discrimination, fat, health, lipedema, lymphedema, morbid obesity, obesity, obesity action coalition, Psychology Today, self confidence, self esteem, super morbid obesity, weight bias in the workplace

Get Busy Living!

November 9, 2013 by Sarah Bramblette 4 Comments

day8

 

National Health Blog Post Month: Day 8 – Favorite Fridays

Make a list of 3 favorite quotes

1. “Laughter is the Best Medicine” – unknown

2. “Get Busy Living, or Get Busy Dying” – Shawshank Redemption

3. “I like corn” – My Mascot

DSC00246

 

Filed Under: Blog Post, Living with Lipedema & Lymphedema Tagged With: lipedema, lymphedema, National Health Blog Post Month, Wego Health

Living with Lipedema: Why Me?

November 7, 2013 by Sarah Bramblette 2 Comments

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.”

 

 

Filed Under: Blog Post, Living with Lipedema & Lymphedema Tagged With: advocacy, breaking, discrimination, fat, featured, lipedema, lymphedema, morbid obesity, obesity, self confidence, self esteem, top, weight bias, weight bias in healthcare, weight bias in the workplace

Lipedema, It Does Exist!

November 6, 2013 by Sarah Bramblette 6 Comments

day6

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.

DSC00258

Filed Under: Blog Post, Living with Lipedema & Lymphedema Tagged With: advocacy, breaking, featured, headline, lipedema, lymphedema, National Health Blog Post Month, obesity, top, Wego Health

Sarah for President!

November 5, 2013 by Sarah Bramblette Leave a Comment

day5

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.

ovaloffice

 

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.

Filed Under: Advocacy, Blog Post Tagged With: advocacy, breaking, featured, headline, health, health insurance, lipedema, lymphedema, lymphedema treatment act, National Health Blog Post Month, top, Treat and Reduce Obesity Act, Wego Health

The Bias Among Us – Success?

November 5, 2013 by Sarah Bramblette 8 Comments

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!

redcarpet

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…

legsbefore

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.

 

Filed Under: Blog Post, Weight Loss Surgery Tagged With: advocacy, breaking, discrimination, fat, fat shaming, featured, gastric bypass, headline, health, lipedema, lymphedema, morbid obesity, obesity, obesityhelp, rny, super morbid obesity, top, weight bias, weight loss surgery, wls

Big Wheels Keep On Turning

November 4, 2013 by Sarah Bramblette Leave a Comment

day4

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.

bigwheel

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.

 

Filed Under: Advocacy, Blog Post, Health Insurance Tagged With: advocacy, breaking, compression garments, DME, durable medical equipment, featured, headline, health, health insurance, jobst, lipedema, lymphedema, lymphedema treatment act, National Health Blog Post Month, network gap coverage, nhpbm, obesity, super morbid obesity, top, Wego Health

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