Born2lbfat

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

Archives for November 2013

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.

Lipedema Awareness: Just Keep Talking

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As Dorie the Fish would say “Just Keep Swimming”, in my case in order to spread awareness about Lipedema, I’ll “Just Keep Talking”, sharing my experiences and stories. Today yet another opportunity was presented to me, it was quite a whirlwind afternoon. At about 11:30 this morning I received an e-mail from James at the Obesity Action Coalition asking if I’d be interested in participating in a BBC show looking for people to share their story of living with obesity at 1:30 PM. I immediately replied, “Yes”…then I inquired about some details like “what’s the actual topic of the show?”, “who else was participating?”. Within minutes a staff member from BBC called me to give me more details, and to ask more information about me and my experiences with obesity. Oh and he asked if I had access to Skype, sure I do!

The show was BBC World Have Your Say and the segment was in regards to the story of Kevin Chenais, 22-year-old man from France who was stranded in Chicago because British Airways said that at 500lbs he was too fat to fly. Virgin Atlantic stepped up and flew Chenais to London, where he then encountered another travel issue. I was very familiar with the story, and relieved to hear he was finally getting help to get home.

There I sat in my bed, in my nightshirt, hair in ponytail, glasses on.

Skype means video, right? Ugh, I can’t talk about obesity from BED…what would people think? Probably nothing worse than they already think, but anyway I quickly got dressed, brushed my hair, and put some make-up on. Then another BBC staffer contacted me via Skype to test my connection and I found out it was going to be a radio show. Whew.

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I was instructed that the host would start the conversation but that they wanted the participants to just keeping talking in reply to each other, no waiting on the host to call on me for my opinion just chime right in with my comments. “Is that something you’d be comfortable doing?” That’s something I do all the time!

So I had the pleasure of chatting with two new friends, Becky and Misty, both bloggers who, like me, embrace the word FAT.

Here is the link to our conversation on World Have Your Say: (our segment begins At 31:20)

http://downloads.bbc.co.uk/…/whys/whys_20131120-1910a.mp3

 

Secure Your Mask Before Helping Others

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National Health Blog Post Month Day 19 – Top Three Tuesday

Give three pieces of advice you would give to a caregiver.

1. “Secure your mask before helping others” – Yes, the line from the airplane safety presentation, but it’s true for all aspects in life, especially for caregivers. Remember you need to be at your best in order to help others, that includes being physically and emotionally healthy. I will admit my first time being a caregiver was stressful, the hospital care the first night was not as I would have liked. I could have slept overnight in my friends private room but I knew I would not get as good as rest as I needed, and I the next day when I arrived back to the hospital the morning nursing staff had everything in order, my friend was in good spirits and ready to go home. I was well rested and ready to get him settled at home. Seek out a caregiver support group, and try to have back-up help. I know at my last job there was a Caregiver Support Network.

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2. Allow the patient to be as self-sufficient as possible – From my experience as both a patient and as a caregiver, both in short term care situations, the more the patient can do for themselves the healthier they are, and you will be also. (See #1) My mom is a nurse, and I am thankful she was able to stay with me after most of my major surgeries. As she would take care of drains, or bandages, she would explain to me what she was doing and why in case I needed to do it myself. Eventually she had me do it myself, I would joke that she was “a bad nurse” and she’d reply back “I’m making you self sufficient, it’s part of your recovery plan”. Of course not every patient is as able as I was, but encourage even small tasks, no one wants to feel helpless. It’s often difficult to accept help at all.  I know as a caregiver I appreciated when the patient did for themselves. My friend had a minor unexpected complication, I joked that my nursing fee had increased. However, in actuality they were a great patient. I would arrive with lunch, and they had already emptied drains and documented information. The only thing I needed to do was change bandages in an unreachable area. I would bring over food that just needed to be heated for dinner.

3. Be an Advocate – But do not be a bother. There is a difference between advocating for someone and hounding hospital staff, especially if it’s not the correct hospital staff. Remember healthcare should be a TEAM endeavor. Patient, nurses, doctors all on the same team with the patients health as the goal. If you want respect as a family member or care giver, and you want the patient to get the best care, communicate with calm respect. I know it can be difficult, as with illness many emotions are involved. However, it is key to getting your end goals met. Yes, sometimes you need to be a squeaky wheel but remember a squeak can be still be respectful.  I learned a lot from my mom being an RN. I understand the job the RN has, and the many other patients they have to care for in addition to me or my friend.

Sorry I need a another….

4. Make it Official – If you are the main caregiver in a serious medical situation, be sure the patient has given you the authority to make healthcare decision for them. Medical power of attorney, or healthcare surrogate. Do not ASSUME the patient’s wishes or your wishes will be honored at all times. Hospitals have laws to which they have to abide by, and often multiple family members want to chime in on what is best for the patient. Do not put the staff or your family in middle of a fight at a time when the focus should be on the patient.

What advice do you have for caregivers or patients?

NHBPM – Three Truths and a Lie

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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?

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Treat the Patient, Not the Obesity

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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.

Lipedema Treatment: Our Only Alternatives

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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.

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?

Admit It: You Drink Diet Soda

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National Health Blog Post Month – Day 9:  Just admit it!

It’s taboo. Write about something that people do but don’t like to talk about or won’t admit to doing.

With a STRAW!

With a STRAW!

Nothing stirs up debate within the weight loss surgery community like a discussion about drinking diet soda. Rumors and scare tactics surround  the consumption of carbonated beverages from being the cause of regain to causing pouches to explode. Surgeons’ post-op protocols vary on whether or not weight loss surgery patients should consume diet soda. Some surgeons say NEVER, some say whenever as long as the bubbles don’t bother you.

My surgeon’s protocol was the latter, actually my nutritionist’s recommendation was I could try diet soda, and if it didn’t bother my stomach I could have it in moderation. So I did, and I do drink diet soda. The moderation part….um not so much.

My name is Sarah and I’m addicted to Diet Mtn Dew.

There I said it. I admit it. I do not deny I drink diet soda. It is probably my one unhealthy habit. I do not drink alcohol, I do not smoke, let me have my diet soda!

I’m not the only one. Yes, I do know many post-ops who have forever given up their bubbly soda. Kudos to you. You are stronger than I, although I’m sure there is something you enjoy, and enjoy probably a bit more than you should. Don’t we all have something we over indulge in?

Drinking diet soda is so taboo that many post-ops hide their drinking. Which is odd in a community that so opening partakes in drinking alcohol. At an event a few years ago I actually had a fellow post-op question why I was drinking Diet Coke, when I should be well aware of it’s relation to regain. He was drinking bourbon or whiskey on the rocks. Really?

It’s interesting watching fellow post-ops “hide” their diet sodas at events. I’ve seen it poured into cups to hide, or taken in grocery bags  to rooms for private consumption. As if there is an “image” to uphold and we must not let others see us being real humans who drink diet soda. When I attend events I drink my diet soda straight from the original bottle or can, and in public. It’s interesting to see others reaction, I was even asked “where I got the contraband?” Seriously, it’s diet soda, not crack. Are we not adults capable of making our own choices?

It could be worse, it could be regular soda. Right? I know, the studies say…………..

But there are so many chemicals. Excuse me but take a look at the ingredient list on your protein shake.

So let’s be real each other, we are humans, we are not perfect…actually I have a confession to make. The other day I mentioned that I took a couple Advil for pain in my legs. I was asked if I ate something with them since NSAIDS are also a supposed “no – no” in the WLS world. I assured the person I take proper precautions, as I also take a daily aspirin for medical reasons.

The truth is yes, I ate something…I washed the Advil down with Diet Mtn Dew and two cookies.

So tell me, do you drink diet soda? Energy drink?

 

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.”