Born2lbfat

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

Self Care in Managing Chronic Illness

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Massage

Must be nice to get a massage! – No, it would be nice to not have a chronic illness.

Yes, that’s me. Yes, I’m naked under there. Being naked doesn’t phase me after years of medical related appointments from doctors appointments to physical and occupation therapy for me legs. I’m so used to taking my clothes off that I once walked into a physical therapy appointment and starting taking my shoes and pants off while talking to my therapist, I then started to take my shirt off and she exclaimed “Sarah, what are you doing?”

Whoops my bad, guess I forgot where I was.

Through a decade of living with a chronic illness I’ve learned a lot of about how to manage my condition but more importantly my overall health and wellness. For years I had manual lymph massage two or three times a week, and while a massage sounds nice the application of layers padding and compression wraps really ruins any relaxation achieved through the gentle touch of massage.

Now every month I devote a day to self care and get a massage and pedicure. Both are important to maintaining my physical health and my emotional health. The massage helps my lymphatics and the pedicure keeps my feet in a healthy condition. Both help relieve stress. I know and trust both the massage therapist and the pedicurist, as it is important that proper techniques are used to avoid any complications.

I know many fellow Lipedema and Lymphedema patients fear the idea of anyone seeing their legs and fear the though of getting a pedicure. I’m sure they could never imagine getting naked for a massage. But I assure you, like doctors, these professionals have seen it all and are there to make you feel better not to judge.

So I encourage you to make self care a priority in your life. If you are not comfortable going to others for a day of pampering, take the time to do a little DIY spa treatment at home. Take a bubble bath, rub on some nice lotion, paint your nails a fun color.

How do you take care of YOU?

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Why I use the F-word

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I use the f-word for several reasons. Let me clarify, this is why I use the 3-letter f-word, FAT. (why I use the 4-letter f-word is a blog for another day, if that even needs an explanation)

I refer to myself as fat because I am fat. This is how I self-identify, so it’s not for others to tell me whether I am right or wrong for referring to myself as fat. However, I realize by doing so and by having the f-word in the name of my blog people make assumptions about me and my mental and emotional health. Also, as an advocate against weight bias I am sure it can be confusing that I advocate against stigma and bias yet refer to myself as fat.

Surprisingly, or not so much, people associate the word FAT with negativity. Some might think I use the f-word to reclaim control of its connotation, to put a positive face to the otherwise negative perception. There might be a bit of truth to that as I do not think being fat is a bad thing, there are far worse things to be in life than to be fat. But the real reason is because plain and simply, or beautiful and complicated…I am fat.

Why do I refer to myself as fat instead of obese, plus-size, fluffy, juicy, pleasantly plump?

I do not believe I am a person affected by the disease obesity. I have no metabolic co-morbid health issues related to my excess weight. The disease I am affected by is Lipedema, which  is a fat disorder. My body has too much fat, that causes my BMI to fall into the morbidly obese range and I disagree with the way BMI is used as an indicator of health, so once again I opt to use fat instead of obese.

Fat is a medical term, our bodies are comprised of bones, skin, muscles, and fat among other things.

Everyone has fat, I just have more of it.

Fat describes me, it does not define me.

Fat is a physical aspect of my body it is not an indicator of my intelligence, self-worth, abilities, or character.

2013 My Year in Review

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Explored New Places

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Validation

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Speaking of dreams…. I decided to pursue mine and took a leap.

Went back to school to pursue a Masters in Health Law.

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And restarted this blog to share my story…and share I did….

My story in OAC Your Weight Matters Magazine.

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My story featured on ObesityHelp.com.

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My story featured in Psychology Today.

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Advocating for the Treat and Reduce Obesity Act and The Lymphedema Treatment Act.

Rep. Brad Wenstrup

Rep. Brad Wenstrup

Nominated for my advocacy efforts.

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Had some fun along the way….

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Made new friends…

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Recycled the tutu!

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Overall 2013 was a great year, one of transitioning towards a life of living my passion…I haven’t figured out exactly where I’m going but I’m enjoying the journey….and my plan for 2014….

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I Am Thankful For My Fat

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

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

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

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

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

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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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.

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.”

 

 

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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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!

peach

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.

peachmario