Lipodystrophy

How many people have often wondered what I do to keep my muscles so prominent?

Just a preview of what I look like with Lipodystrophy. The ripples you see along my abdomen in this dress are my muscles, not fat.

Do you think I’m a body builder?  Do you think I lift weights all the time?

I wondered the same thing throughout my entire life.

Why am I so muscular when I don’t lift weights?

I remember when I was 10 years old, the summer of 1982, I joined the summer swim team.  I was actually a pretty good swimmer and won quite a few awards for my swimming.  From that time, I finally realized that my body was rather different from everyone else’s.  Kids at the pool started calling me “She Man”, because I had such well defined muscles.  Along with these over developed muscles were a few other strange physical characteristics such as having a rather long torso which made many shirts difficult to wear without showing my belly.  It made those one piece bathing suits for swim team rather difficult to fit my body.  It wasn’t until about 1984 when Madonna made the fashion statement of showing your belly button, so I was doing this before it was popular.  My face was always a “full face” with a double chin, so I was rather self conscious of these things and there are not very many pictures of me because of my low self esteem for how I looked in pictures.  Back in the early 80s, this was just kids being kids and teasing was just a part of life.  Today, we would call this body shaming.

It wasn’t until Terminator 2 came out in 1991 that things shifted in the body fashion sense.  That opening scene with Linda Hamilton, working out in a prison cell made all the difference.  She was buff and strong and had well defined arms.  That’s when people really started going for the strong body look.  Prior to this, I was being approached by people left and right asking me “Are you a body builder?”, “How much can you bench?”, or “I bet you could really beat the crap out of somebody!”  Well, no, I wasn’t a body builder.  I never have benched and I will never beat the crap out of somebody.  “It’s all natural,” was the best response I could give, followed up with “I can’t step foot into a weight room or else I’ll bulk up that much more.”

Age 19.  1990.  Well defined muscles due to no subcutaneous fat on my arms, legs and torso.

Let’s fast forward a few decades.  I’m still very muscular.  I have some really weird health issues that would make you think I exist on a diet full of pizza, cake and alcohol.  I’ve always had an impressive appetite and I can almost eat anyone under the table if I wanted to.

I have insulin resistance, which is a fancy description for Type 2 Diabetes.  My body can produce insulin, but my body can’t utilize the insulin I produce.  I am on an insulin pump with a special insulin that is 5 times stronger than regular insulin.  Even though I eat rather “clean”, my blood sugar levels are quite unstable and high.  I’ve often been accused by my doctors of “cheating” on my diet.

I also have extremely high cholesterol and triglycerides.  These are the lipids/fats in your blood, usually filtered out by the liver, except for me.  Normal cholesterol levels are under 200 on a blood test.  Normal triglycerides are under 150.  My triglycerides range in the THOUSANDS.  In June of this year, my triglycerides were over 10,000.  Having such high triglycerides is what causes pancreatitis, and I have had pancreatitis way too many times to count now, since 2011.  The standard treatment for pancreatitis is to be admitted to the hospital with IV fluids, IV pain medication and NPO – meaning “nothing by mouth”.  Recently, we’ve added a new treatment for the triglyceride levels: plasmapheresis.  This is similar to dialysis, but it focuses on the plasma, cleaning the lipids from the plasma before it’s returned to my body.

Why is all this happening?

Definition borrowed from LipodystrophyUnited.org

I have an extremely rare metabolic disorder called Lipodystrophy.

Lipo = fat          dys = bad         trophy = tisssue changes.

Lipodystrophy is any condition that results in the loss or redistribution of fat tissue, as well as a defective metabolism of fat.  This is one of those rare genetic diseases that has a prevalence of 1 out of 1,000,000.  There are many different types of Lipodystrophy and mine is called Familial Partial Lipodystrophy type 2.  Here is the definition from the rare disease information from the NIH – National Institute of Health.

Familial partial lipodystrophy type 2 (FPLD2) is a rare, genetic disorder that affects the amount and distribution of fat in the body. It causes a loss of fatty tissue from the torso, buttocks, and limbs, while causing a buildup of fatty tissue in the face, neck, shoulders, and abdomen.[1][2][3] Symptoms typically develop around puberty. FPLD2 can be associated with a number of metabolic complications, including insulin resistancedyslipidemia, diabetes, and liver steatosis.

I have had a long, medical mystery journey with too many doctors’ visits and hospitalizations.  Each occurrence seemingly unrelated to the other and always with an intensity that seemed unreal.  It’s because of these health challenges my entire life that has lead me on a quest to understand, not only my own medical mystery, but to also help others with their journey.

I have always been an advocate for alternative medicine, but it must always be balanced with a healthy respect for modern medicine.  I was a rather rare student in Chiropractic school that had such a respect with modern medicine, sometimes to the detriment of fellow classmates “health shaming” me by making silly statements such as: “if only she was getting adjusted on a regular basis, she would not have ended up with pancreatitis in the hospital.”  Let me just clarify this now, that is an utterly stupid statement.  I have been getting regular chiropractic care since I was 18 years old.  Other “health shaming” statements from a variety of healthcare professionals include: you should be following a vegan diet, take this supplement, you should be seeing a functional medicine specialist, have you tried x, y, or z?, you need to try this exercise, are you cheating on your diet, are you drinking alcohol… this list goes on ad infinitum.  I have found that if you don’t fit into this nice little box of symptoms, healthcare professionals will be quick to dismiss you because they don’t understand why you are outside of the norm.

Back to that statement about chiropractic, I would not be here, or managing my health crises as well as I do were it not for this healthy balancing respect between modern medicine and chiropractic.  After any hospitalization, I go to see my chiropractor for an adjustment, specifically so that my body can heal.  My chiropractor happens to be a most amazing person who knows how to also perform a visceral adjustment and she accurately monitors my symptoms so that we can tell when a flare up is coming.

Because I have spent a lifetime feeling like a freak of nature, enduring strange glances and strange questions, and because I now have the clinical background to educate others, my life long dream is to help other people feel comfortable in their own bodies.  I live and thrive with chronic pain and I have a special place in my heart and in my practice for fellow chronic pain people.  I love to help people release the emotional component to their pain through chiropractic and massage.  I love to help empower people to take an active participation in their own health care and I teach people how to communicate with their healthcare professionals so that they are heard, understood and acknowledged.  I know from personal experience just how frustrating it is to speak with doctors who accuse you of not following a healthy lifestyle plan or who just want to pre judge you for being a drug addict seeking narcotic medication.

Now that I know what my genetic disease is called, I am able to reach out to others just like me.  We are a very rare breed, indeed.  There might not be very many of us as adults, but I understand that there is a growing population of children being diagnosed.  I would like to help those parents and patients living with Lipodystrophy.  I believe that one of the components that has not been addressed just yet in the medical realm is the musculo-skeletal component.  All those prominent muscles are actually quite tight, tense and painful, but children and most adults don’t know how to communicate what they are feeling as something ‘out of the ordinary’ because they have been living this way since birth.

I am in the process of writing my book, The Empowered Patient which will discuss how to communicate with healthcare professionals as well as describe my journey of living with Lipodystrophy.

I would like to create and invite people with a similar journey to gather together in such a way that we can support each other and the generations that follow us.  If you would be interested in this, please fill out the contact form below and please feel free to share this message with others.

I have created a Facebook group called “Lipodystrophy Atlanta“.  Please feel free to join us.

In Love & Light with Abundant Blessings of Health,

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