Category Archives: Diabetes Advocacy

Feb 2013 Test Results and Why It’s Good to Get the Details

I haven’t posted an A1c in a while.  Let’s face it I haven’t posted anything in a while but in that time frame I’ve received emails like, “So, you’re A1c is suddenly not good enough to share?!”  No…I just haven’t made it to the endo, lately.  Sometimes that low $30 co-pay IS a deterrent.  That and fear of course.  So I finally did go and here are the results.  My A1c is 5.9, the highest it’s been in the past 6-7 years.  I drank regular coffee before my appointment to see if I could bump up my blood pressure since lately it’s been in normal range as long as I exercise regularly and avoid caffeine and sure enough, I was 130/80.  I got it tested again a few days later while having had no caffeine and I was 110/71.  WOW, is all I have to say.  And no more regular coffee for me, ever!

About my A1c, in order to be fair and transparent, it sounds fantastic but, it’s a reflection of more swings in blood sugar than my last A1c which was 5.7 so I really have more work to do- even though it wouldn’t appear that way.  And that’s the point with my sharing my A1c and the other tests along with that.  Because if you’ll notice below where I post pictures of my results, I have an MCHC test in high range and in my case it means Vit B 12 and Folic acid deficiencies (having ruled out liver disease as a possibility).  This winter was tough financially so we didn’t purchase many foods high in those vitamins and when we did I left my portion to my kids since they are at a more crucial state of development.  I eat a lot of vegetables but meat and seafood sure seem to boost vitamin B 12 levels more than anything else.  So I will try to include more of those foods now for sure.  That and get all of us on a multi-vitamin.  The other thing I want to mention is that it seems that having a deficiency in B12 and Folic Acid affects red blood cell life (from what I read).  Our A1c test reflects our blood sugars over the past 2-3 months because that’s how long those cells live before they are replaced with new ones.  If mine are dying more quickly my A1c would reflect a period of time less than 2-3 months.  So there is that.  Though I’m not sure about how all that works.

By the way, I found this out by asking my doctor’s office for my detailed results as you see below.  Otherwise they send me a sheet of paper stating what my A1c is and letting me know that everything else is “normal”.  When I got my paperwork this time around I asked for all the exact test result data and found out those vitamin deficiencies (good to know so I can actually do something about it) and I found out a high bilirubin count which in my case (due to unshared personal data) seems like a genetic thing and leads me to attempt some liver detox to see if that helps (like juicing beets).  It doesn’t seem to be anything serious except it possibly causes chronic fatigue and mild jaundice and that’s no fun.

So anyway, here are the results.  I just want to point out that at some point my triglycerides, cholesterol, and thyroid levels were all abnormal and now they’re not.  Not always, but often, these things can absolutely be helped with changes in lifestyle habits.  Worked for me and it’s something I keep putting effort into.

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A Day in the Life of a Type 2 Diabetic

I wrote a post a while back called Which Diabetes is Worse?  I had a thoughtful response from a type 2 diabetic, Christine, who felt strongly about how both type 1 and type 2 diabetics have it rough.  I don’t know what it’s like to have type 2 diabetes so I asked her to write from her perspective.  I really appreciate Christine doing this because it’s always important to be reminded how all of us are dealing with challenges unique to our own journey in life.  Here’s what it’s like for this type 2:

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Christine and her family

A while ago, Sysy invited me to do a guess post on the “The Day in the Life of a Type 2 Diabetic.”  I don’t know what it is like to be T1, so I can’t really say what is different, except for maybe dreams and goals.  From everything I have heard, when you are a Type 1, you became such at a pretty young age, Pre-teen even.  I could be wrong, but this is before a person has full expectations of their life and what it would be like.  When I was a teen-ager, I may have known what I wanted to be, but I was still planning and letting my life unfold.

I became diabetic at 25.  I already had a life and thought I knew how it was going to be.  I was living that life.  I was married and had a toddler.  I was finishing my degree and knew where I was going.  I had a solid plan and saw no turns in the road.  I wanted 6 children.  I was going to be an active stay-at-home mom, who did all kinds of fun projects.  I was a contributing member of society and actively participated at my church.  I was a “yes” girl.  I thought I could do anything if I put my mind to it.  As a person I had fully developed my habits and tendencies.  I was a creative person who didn’t plan well and lived in the moment.  I did what I wanted, when I wanted, to.

So, when my life changed at diagnosis, I had to do more then develop new habits and routines, I had to change who I was, who I had become over those special years.  It wasn’t even until today in fact that I realized, that I had to rewrite an entirely new life for my self.  All my dreams and goals, had to be revised.  Everything I expected and planned for had to change.

It is hard to change who you are when you are already done with the preparatory years. It’s scary.  Who am I now?  What can I do?  How will my life be? Some answers are clean cut.  The dream of 6 children is not going to work out.  But can I still be that mother I worked so hard to become?  Some days I am so tired, it feels impossible.  I am 29 now and I am still trying to figure myself out, with this new life.  I have to change me, I have to become consistent in my routine.  This feels boring and against my nature.  I feel like I am still on the turn in the road, unable to see the road ahead of me, hoping the road continues.  It is exhausting and I feel deflated and defeated a lot of the time.

That is what it is like to be Type 2, at-least when you are a young T2.  I feel physically and emotionally tired and anxious all the time and I can remember what it is like to be healthy, which almost seems like a curse instead of a blessing.  In some ways it’s like being a teen-ager with an adult life, because I have to find myself all over again. On the other hand, I did have that time where I got to live my life without this weight over me and that is a blessing.  I had a typically teenage experience and didn’t receive my trials until I was older.  So, that I can be thankful for.

What is the same?  I don’t think anything is the same for anyone?  We all have struggles.  One might be great at maintaining their blood sugars where another is not.  While one might be afraid of needles and the other had no problem with it.  Some might be good at keeping a routine and some might be good at keeping an optimistic point of view.  We all have out own personal trials with this disease.  No one has it worse or better, it is just different for each of us.  It may feel lonely and isolating at times, because people don’t see “the sweetness within,” and how it can affect a person, but we T1 or T2 diabetics, we know and we can support each other.

Thanks for opening up with us Christine!  Comments and discussion encouraged everyone!

A Diabetes Art Showing

My sister and fellow type 1 diabetic, Ana, had her first art showing recently on campus of her school, James Madison University.

The theme she chose was diabetes so I really wanted to share pictures of it with you all.

One of Ana’s professors expressed worry that this theme of diabetes somehow limited Ana’s potential to perhaps show her range. I would like to respectfully disagree. Diabetes is a 24/7 condition that affects every single cell in our bodies, has no cure, and has mental, social, emotional repercussions. Diabetes has no limits and neither does art.  Art is expressed in many forms and has the potential to teach, inspire, and move us deeply.  I have diabetes and know my sister but was still very surprised and moved from this collection and I know that many people without diabetes were really impacted and informed by this art work.

Ana was extraordinarily brave to open herself up in this way and allow us a chance to learn from and relate to her as a person living with diabetes. What is it they say?  That in showing our vulnerabilities we reveal our strength and courage?  Well, I agree and I’m really proud to call her my sister.

Enjoy :)

 

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Her showing starts with a setting for visitors including her business cards and a jar of strips which gives a visual for just how many of these things we go through and how many finger pricks we endure.

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This one is called “ketoacidosis”. Ana has only visited the hospital once in almost 19 years with type 1 diabetes and it was for ketoacidosis as a teenager. It came up fast and seemingly out of nowhere and scared the heck out of us. She recalls that she didn’t really know what ketoacidosis was nor did she realize how dangerous it could be.

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Here, Ana says this represents the time between her hospital visit for ketoacidosis and the time she began these paintings.  So activities and events are shown below and collectively demonstrate what is her very “Normal Life”, as the painting is called.

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This one stumped me until Ana explained it.  It’s the third in this series of four paintings and is called “Attack”.  During the time of Ana’s “normal life” she read up on ketoacidosis to understand it better.  She read about how serious it was and then went days waking up in the middle of the night with what sounds like anxiety attacks.  She says she felt her heart beating strongly (which is why it’s enlarged in the painting) and felt she was being choked and sick to her stomach with fear at the realization of what diabetes could cause to happen.

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Ana ends with a piece called “Thank You” which represents the support and love from family and friends.

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“Insulin is Not a Cure”

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This one is called “I Can See It Happening” and represents Ana’s fear of diabetes complications, namely, blindness.  This is a strong fear for her because of how she loves to paint and make art and is a generally visually oriented person.  But the squeezing out tears is also indicative of the many frustrations from living with diabetes.

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I don’t remember this but days after Ana’s type 1 diabetes diagnosis at age 3, she caught the flu!  Here are two framed sheets of notebook paper where our dad charted out Ana’s blood sugars trying to understand  type 1 diabetes and help take care of a young daughter with the flu all at the same time.  She was still in the honeymoon period at this point.

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A wall of thoughts and feelings about diabetes…

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Ana asked people with and without diabetes a few questions and framed the questions and the responses she received.  Here are a few:

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Ana’s answers to those questions:

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Our friend Jennifer Brannock’s response:

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Our mom’s response:

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Our Dad’s:

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Our 12 year old brother:

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From Ana’s boyfriend (ironically, also my husband’s youngest brother):

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Here is one girl’s heartbreaking response (let’s leave her some encouraging comments!)

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From Patty Keller:

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More people from the DOC responded:

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Don’t we know about ketones and strips…

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The beta cell is quite lovely:

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and in color:

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I remember taking this picture one summer. Ana and our other sister Sara were in the basement roller blading to music. Our mom called down the stairs, “Ana! Check!” Ana dutifully shoved off her skates and ran upstairs to check. I thought about how our reality was so strange, yet so normal and I took a picture of her while checking her blood sugar. I didn’t tell her to “say cheese”, she did that all on her own. After this photo she went back to roller blading and I was secretly inspired by her ability to carry diabetes so gracefully.  Even though the hardship of diabetes is present, I think this picture reflects the potential we all have as people with or without diabetes.

In other words, we do what we need to do, smile…and carry on with life.

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Thank you so much for viewing/reading this post.  It’s the next best thing to having had you all over to the art show in person.

We’re eager to hear what you think in the comments :)

 

XOXO, Sysy and Ana Morales

Diabetes Cost Me This Much This Year

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I just did the math on how much money I spent this 2012 for my diabetes.  I included doctor visits and labs and prescriptions and even glucose tablets.

It came out to $1000.  And I’d like to quickly note that if I ate the standard American diet (thus needing more insulin and strips) I’d have spent almost $2000.

Anyway, not bad, right?  Or is it?  I’ve had diabetes so long I don’t even know anymore.

Recalling what others mention spending I think I’m one of the lucky ones.  Still, I know an extra $1000 would have done my family some good.

But mom being healthy does the family tons of good.

I’m really curious, how much did you spend on your diabetes this year?

Free eBook Shares Diabetes Diagnosis Stories

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The online diabetes magazine A Sweet Life has put together two great eBooks you can download for free.  They are each a compilation of inspirational diabetes diagnosis stories but one shares stories from people with type 1 diabetes and the other, type 2 diabetes.

My story is one of the stories in the type 1 diabetes eBook.

It was an honor to share it and I thank A Sweet Life for doing this and offering it to the DOC for free.

If you haven’t checked out A Sweet Life, do so today-it’s full of seriously handy information and a source for excellent opinion articles by a number of people with diabetes.  In fact, I’d say the site is one of the DOC’s best kept secrets.  Check it out and have a great one!

XOXO

The Polls in VA Weren’t So Bad

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I went to vote yesterday afternoon after my husband got home.  I was expecting to be in and out like last time around but was pleasantly surprised to see loads of people in front of me leaving me almost outside the entrance to the building.

I knew my blood sugar was around 70-80 and felt confident going in that I’d be fine to go vote and then get something to eat.  But of course when I saw all those people, I gulped thinking, “Can I make it?”  I searched my purse but didn’t have anything thanks to two little munchkins who think glucose tablets are candy.

I thought, “Well, I’m not low yet, I should be fine.”  After an hour and 15 minutes I realized I was too low to think straight and I did the irresponsible thing and argued with myself about whether it was worse to pass out in front of so many people and miss my chance to vote or walk out of the line I stood in for a long time and appear to be giving up on my voting to everyone around me.  I don’t normally care what people think but this election has me emotional and my low had me irrational so those were my thoughts.

Finally, I turned to the two ladies behind me whom I was chit-chatting with and casually mentioned, as if it were amusing, that my blood sugar was low and I wasn’t sure I’d make it to the voting booth still standing.  They looked at me and one said, “Oh, you have hypoglycemia, too?  I get low, too”.  I clarified, “I have type 1 diabetes but yes I get low and eventually go unconscious if I don’t get sugar in me.  The women looked at me with concern and one went over to the volunteer desk where people signed in and asked for some sugar and explained it was for a diabetic who needed it.

The lady at the desk looked at her huge container of juice and said, “That’s mine, we don’t have anything else.”  Another lady said, “Sorry, I don’t have anything.”  And they both went back to business.  I started feeling panicky, reluctant to make a scene and start asking people if they had Halloween candy in their purses.  I live in Virginia in a town that is divided 50/50 in this election and you could seriously feel the tension in the air.  It made me feel the opposite of warm and fuzzy and I didn’t want to ask anything of anyone.

But, I was starting to get really foggy.  All I could think was, “Sysy, you idiot, get sugar!  It’s important!” But what is it about when we’re low?  Suddenly important things become the things we hesitate about the most.

The line moved along and we ended up near the entrance to the church’s kitchen.  The three women behind me gently pushed me in there and helped me get some juice and a man ran over to me and gave me the chocolate chip cookie that he had just retrieved from his car.  I wasn’t even aware others knew about my situation.

Eyes were on me and people encouraged me to “drink and eat!” so that they wouldn’t see me hit the floor.  My blood sugar must have been really low at this point because everything was numb, especially my tongue.

After a few minutes I felt better and nervously laughed and said, “And they say people don’t help each other out anymore…”

Random comments from all around like “That’s right”, “We don’t have to agree to be united”, “People are people”, and “We’re just glad you’re ok” echoed around me and suddenly, the room didn’t feel like such a divided place.

A woman across the line said to me, “We don’t need to agree on what President to have to support each other.”

And I hate to admit it because of my cheese intolerance but that felt real warm and fuzzy.

National Diabetes Awareness Month 2012

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It’s National Diabetes Awareness Month.  And what are we going to do about it?  There are so many ways to pitch in and I’ll be trying to pass the word as I hear about it.  But first, I want to appeal to those out there possibly asking themselves the question, “What’s the use?”

First off, I understand.  I mean, as a society we’re also trying to cure a bunch of other devastating diseases so sometimes it feels overwhelming trying to fight for one’s own plight.  Even though I’m doing ok with my diabetes as of 11am this morning (it’s always subject to change, I’m aware of that), others have had loved ones die, depression, financial difficulties and other huge challenges to handle alongside their diabetes.  So I want to advocate not just for myself as a person with diabetes, but for all those who are struggling immensely and paying high interests for it.  Not to mention all their loved ones.

Secondly, diabetes researchers have given us very compelling statements about how close to a cure we are.  They say the main factor between us and our cure is in our wallets.  Now if you’re like me, your wallet is more decorative these days than anything else but just knowing that possibility is a strong push for me to think “Ok, how can I advocate for diabetes and get more money to the researchers?”

The clock is ticking for all of us and will soon be ticking for many more who will be diagnosed this month.

So again, It’s National Diabetes Awareness Month and what are we going to do about it?  Just pick one way in which you personally can help.  No matter how small, your help is a big deal.

In fact, start by doing the Big Blue Test.  And stay tuned for more info.

XOXO

Sysy

Travel and Diabetes Ramblings with a Stranger

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One of my favorite places in the world is the airport.  I knew early on the significance of such a place having moved from another continent to this one as a young child.  The airport is like a revolving door of possibilities and opportunities literally flying in and out all day in the most organized fashion we can manage.  Each trip to and from an airport includes new sights and faces.  Each trip holds a little mystery and anticipation.  In an airport we’re forced to be patient.  We’re forced to have faith in others, namely the pilot of the plane.  We’re forced to sit still and be one with our thoughts and observations.

It’s so healthy.

It’s true that frequent travelers tend to dash about, mindlessly hooked to their device of choice, but I think even they must feel much of the same.

The other day as I checked my blood sugar on the plane I noticed how uncomfortable it made the older man next to me.  So I started talking.  I explained what I was doing and why.  I shared the results, “141, I’ll take it!”  The man looked out the window and let out a deep breathe.  He said, “So many people have diabetes.  It’s going to ruin our country.”

“If we let it”, I said.

“Well, I’m glad you seem to be taking care of yourself but what about everyone else?  Why can’t people just eat better and exercise?”

I went into clarifying some myths and misconceptions about diabetes while the man listened intently.  Then I said, “I wish we could bring everyone out on a trip somewhere and educate them all about diabetes and health here in the airport.”

The man laughed out loud and furrowed his brow at me.  “Oh?  Why at an airport?”

“I don’t know, just seems like a good place for all sorts of educational metaphors to really click.”

“Oh? Tell me more.” he said.

“Ok…well, just as with travelling, living life with diabetes is full of possibilities and opportunities.  In fact, every morning we get to face a new day with blood sugars that haven’t happened yet and strive to make the best of them.  Each day we have the power to choose what we are going to do with our health, you know, what we’ll eat, whether we’ll exercise or not, and how we’ll approach challenges.  We can get organized with our lifestyle habits and diabetes management routine for better, more consistent results.  We can choose to take inspiration and support from everything around us, from the people we encounter to the day’s weather.  We can learn to accept the risks of living with diabetes and not let them slow us down just as we choose to get on a plane so we can go somewhere even if we’re scared to do so.  We can learn to handle anticipation so we can move past unsightly blood sugar results.  We can learn how being patient doesn’t mean we have to wait forever and that eventually, we’ll get where we’re going.  We can learn how to trust others and ourselves to do the best we all can.  I just feel like the airport is a peaceful and safe place for learning, I don’t know.”

The man stared blankly at me for a moment and then scratched his head.  Then he laughed again and said, “And on the plane, we go over how to bring up diabetes with strangers by testing blood sugar in front of them.  Then they can ask questions, be educated, and hopefully feel compassion and understanding and spread that around.”

“See?  It would totally work!”

In between chuckles the man said, “It did, today.”

Health Based, Not Weight Based

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I’ve been learning more about obesity and how it appears to increase the risk for disease.  Key word there is “appears”.  But before I get into that, I think we’d all agree that it’s just obvious that obesity negatively affects health in some ways.  Some obese people can go decades with excellent blood panels and be otherwise healthy, but the extra weight can lead to obstructive sleep apnea and osteoarthritis.

In my nutrition studies I heard a lecture by Dr. Barry Sears where he underlined that obesity and disease are correlational and not necessarily causational.  In other words, obesity is present in a large number of those with disease but we can’t prove if it’s the obesity causing the disease or if the two just happen at the same time.

Studies in the near future should really make this area more clear to us.

In the meantime, this information, coupled with this country’s weight obsession and the fact that people assume a person is healthy simply by looking at their weight, should really change the way we approach health.

I wrote recently about the law of attraction.  When we as a society focus on fixing obesity, you know what we are collectively doing?  We are focusing on obesity.  Instead of focusing on health.  Some would argue that a focus on reducing obesity is a focus on health.  But essentially it’s not because as humans, we look for the quickest solution to our problems and a focus on obesity means we focus on things like a reduction in calories, low fat, low sugar, foods that promise to reduce weight, products that promise to help us reduce the pounds, etc.  Food marketers are pretty smart and have zeroed in on our thoughts and have created a billion products just for us.  And the majority of these products are full of the very substances that caused us our problems in the first place.

What if we focused on a health based approach?  Instead of screening people on their BMI, what if we took their blood pressure and conducted blood tests for their hormones, blood sugar, lipids, and white blood cell count?  Not only would this help many thin people suffering from fatty liver disease and high cholesterol and early stages of cancer, but it would send our society the message that just because you’re thin doesn’t mean you’re healthy and just because you’re fat, it doesn’t mean you’re unhealthy.

Obesity can’t be too comfortable.  Physically, it feels nice to have a weight that doesn’t make it difficult to breathe or move.  But, I fear it’s extremely uncomfortable because of society’s view of obesity.  We’re so advanced right?  And yet, future generations are going to shake their heads in pitiful disbelief when they read about how we treated fat people.  Not to mention how we were willing to assume and judge before truly understanding.

I was generally pleased that Michelle Obama has been highlighting childhood obesity and yet I’ve always felt like the mark was missed.  Now I know how I feel about the initiative.  Hearts are in the right place but the approach is based on weight when it should be based on health and society’s access to the basic components of health.  Right now, more than ever, we need to teach our children about real foods and healthy habits without calling them fat (honestly, if I was a large kid, that would depress me).  We don’t need them to get on some chemical laden “nutritional” diet drink.  We need to work to provide all areas in our country with fresh, affordable food, proper nutritional information, and perhaps teach the basics of food and cooking in schools, rather than teach people how less calories equals less weight gain.  Who in their right mind is going to say, “Yes, I feel empowered now that I know I just need to eat less and move more.”  Obese people have fat cells that work differently than other people’s.  Their cells literally make them feel hungry, very often.  And as I’ve said before and will say again, who will endure hunger indefinitely when they don’t have to?  Who other than someone with an illness, such as an anorexic?

With all this focus on the extra weight issue, we’re avoiding making the message really straightforward and we’re avoiding doing the right things to increase our nation’s health.  We don’t want our congressmen, those who can change crucial laws, to think, “Ok, so we’re trying to get the obese people to adopt a healthy lifestyle…check.”  No, we need them to see the true challenges that many thin and not so thin people have when it comes to eating healthy.  How about subsidizing fruits and vegetables for starters, eh?  Maybe then people’s cells could get the nutrients they need and would stop asking for so much food?

Obesity and it’s links to type 2 diabetes, cancer, heart disease, fatty liver disease, etc, are very complex.  Let’s respect that fact so that we can respect those who are being stigmatized-the very thing we all hate to happen to us.  And let’s focus on the actions that will actually help us.  Checking out our insides instead of our outsides only and helping people make better lifestyle choices because they want to be healthy, not because they want to be thin.   I don’t think it will happen with our overemphasis on “you’re too big”.

I didn’t lose weight by thinking I was too big and needed to drop weight, by the way.  I did that for years and only got bigger.  I lost weight by getting into the habit of thinking, “I’m beautiful, I matter, and I want to learn how to take care of myself”.

It’s time for our country to adopt a health based approach.  One where self love isn’t a joke or an ego driven ideal but a standard for treatment starting with oneself and extending to all others.

On the Radio

I’ll be on DSMA (Diabetes Social Media Advocacy) Live! tonight as a guest.  I’m so excited to talk to some DOC friends and actually hear their voices :)  Here are the details:

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Here’s the link:  http://dsmalive.com/2012/10/03/dsma-live-with-sysy-morales-on-1042012/

 

XOXO,

Sysy

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