Category Archives: Worthy Causes

Children With Diabetes Deserve Insulin Concentration to Meet Their Needs

Young children with type 1 diabetes face a serious conundrum and that is that the available insulin is often too concentrated for their needs.

As a result, endocrinologists wanting to avoid terrible lows (and subsequent lawsuits) in these little ones order parents to feed a certain number of grams of carbohydrate per meal or they convince parents to put their child on an insulin pump, which can dole out smaller increments of insulin to meet their requirements.

However, the high number of carbs many type 1 kids get these days is a dangerous thing for these children because it crowds out essential protein and fat and can lead to weight gain and directly paves the way to roller-coaster style blood glucose management that I promise you, is worse for the child than the parent–no matter how much work and worry is involved on their part.

In the case of an insulin pump, not everyone wants this technology which comes with concerns about tubing issues and scar tissue development and also, not every family can afford one.

Why isn’t insulin made at different concentrations? I mean, it is, but mostly to meet the needs of the type 2 diabetes population which generally has very high insulin requirements. I’ve talked with many type 2s who use in one day, the amount of insulin I use in a week. This isn’t a judgment on them, it’s me pointing out that adults are getting their needs met in this regard and children are being left behind because why? Is it that they can’t advocate for themselves and their parents are being misled by pediatric endocrinologists who don’t know better? Pretty much, I think. One may argue that they grow up quick and then they don’t need such small insulin quantities but childhood health is essential to the rest of one’s life and so optimizing their care while they’re young is morally imperative.

There is a solution for those who want to give their child a smaller amount of carbohydrate and who don’t or can’t use an insulin pump. Diluted insulin. Special diluent fluid is provided free upon request from insulin makers and shipped to your nearby pharmacy. You can do it yourself or have a healthcare provider do it (if you can convince them to). The diluted insulin means you can dose to correct and cover for your child without the elevated risk of sending them low or needing so many extra snacks. This offers the potential to lower their carbohydrate intake, leaving sufficient appetite for what drives growth in a child–protein.

Regarding growth, look up the science, there is nothing indicating your child requires a lot of carbohydrates to grow. I think this is oft repeated mostly due to the above phenomena or lack of time and willingness on the part of physicians to do the proper research as well as their overreliance on what they’re told by other physicians and by governing associations. My daughter, on a very low carb diet, just shot up over 2 inches in 4 months. Before that, she was on a moderately low carb diet for a long time and her height is over the 90th percentile. Her bones and musculature are impressive. Her hair is thick and long, her nails are strong.

Aside from adequate nutrition, kids also need something else to grow to their full potential and that’s normal or near normal blood sugars, which only low carbohydrate diets achieve and which diluted insulin in children enables.

Diluted insulin could be a service pediatric endocrinologists provide to parents of young children with type 1 diabetes if we demanded it. I admit it’s intimidating to do one’s self. First, we have to educate ourselves and then them. Health care professionals feel really bad for us because they know what type 1 diabetes means in the long run for our children and they know the demanding lifestyle we parents lead (because we advocate well for our own suffering–lack of sleep, anyone?) but they’re not being very brave or ethical by ignoring what is going on with kids these days. Too many aren’t thriving!

Not only do most type 1 children have poor blood sugar management, but many are also gaining excess weight. This doesn’t bode well for their future and it’s not fair that adults have appropriate insulin and children don’t. As parents, we have to fight for our kids. Maybe I’m completely wrong. Fine. Maybe you should find out if any of this is true and if so, I implore you to think and discuss the topic with others. I was one of those kids with high blood sugar and weight gain after diagnosis and it made me extremely depressed and unmotivated, totally slowing down the trajectory of my life which has only got back on the rails by a bunch of miracles, sweat, and tears.

I’ve had enough of this poor treatment of children with diabetes and will not stand for it when it comes to my dear daughter. Children deserve medicine that is dosed for their size. They deserve myths to be expelled by our careful investigation and attention to the matter. And they deserve normal blood sugars.

Marijuana For Diabetes

I’m probably being naïve to think this topic isn’t too controversial to post.  But, I don’t shy from ideas and discussions and information so…  I’ve been learning about our “failed drug war” and also about how some people use medical marijuana and the benefits they say they experience.  I’m not someone looking for any type of drug at the moment but I’ll be honest, I sometimes think about what the future with diabetes has to bring and I wonder if I will desperately want that option at some point.

This worry may not make sense to some but personally, I’ve had type 1 diabetes for 20 years.  I’m 31 and know I likely have many more years of diabetes ahead of me.  I know that every year brings the possibility of diabetes complications closer to reality and so I ask myself, “how will I cope?”  One of the most common complications of diabetes is nerve damage, which may bring nerve pain among a plethora of other possibilities.  I’ve dealt with random pains most of my life (not going to list them for you) and am already acutely aware of the way chronic pain works it’s way into every facet of life, from the obvious to the mundane and least expected.

To suffer more pain and not have many options for managing it sounds daunting.  I’m on this topic of thought tonight because two weeks ago I had a cavity filled.  The dentist said, “You have a huge cavity! So this is going to hurt and if it hurts after a few days you will probably need a root canal.”  Well, I’ve been in some decent pain since that day and today I broke down in tears because the constant, between a level 1-10 I’d say 4 pain I’m having is wearing me out.  Life doesn’t stop when someone is in pain.  I mean if most of us have an accident or a temporary illness we get to rest and then move on as strong as ever.  But when pain lasts and lasts, when people can no longer carry you or cook for you or take care of the kids for you, how do you do all that yourself?  I’m only at a pain level of about 4 and I’m wishing someone would give me a sleeping pill so I can have a break.  To be honest, some magnets for pain are taking the edge off for me.  And I’m super grateful and obviously open to solutions like that.

I call this pain a 4 because I think I know a 10.  I once spent a few hours screaming non stop from kidney stone pain (after a laser blasting of a large stone which caused many small stones to parade down my urethra) which was so bad I would have nearly taken a gun to my head had that option been available.  I know, I know, “Sysy, how can you say such things?!”  Pain can take over.

You must be asking yourself, “Ugh, why haven’t you gone in for that root canal?”  Well, because I can’t afford it.  But since I have health insurance I can’t go to the local free clinics, either.  I have private dental insurance and it costs an arm and a leg.  My son is going to the dentist tomorrow and it will cost $500.  He comes before me so I will bargain and strategize until I can manage to go in and hand over the dough.  Don’t worry about me, Friday is nigh!

Back to diabetes.  You can see what has taken me down this trail of thought.  Previous life experience, current pain that is making my jaw, ear, and neck hurt and my vision blurry in one eye.  (Gosh, I hope that’s normal)  If diabetes causes me some kind of chronic pain in the future…will I be able to handle it?  I’m very sensitive to pain.  I once went to a salon to get a Brazilian wax and passed out like a fool.  I may not want prescription medications with dangerous side effects and astronomical costs.  In fact, I know I don’t want that option.  My organs need to be protected.  They’ve been stressed out since I was 11.  Is there anything else?  I hear there is.  I think I hope it may be available if I need support one day.  And this doesn’t even begin to address all the people who could use some help RIGHT NOW.  Do they, do you, want this option?  I’m all about healthy lifestyle choices to manage conditions but what if I need more?

Growing up, the boy I was in love with, joked with me often saying, “Marriage-you-wanna?” (Get it? “Marij-uana?”)  And like a good girl I always said “no”.  I’d like to revise my answer to:  “maybe one day?”

 

Cancer.

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A big scary word.  Because it is.  Of course, it does depend where it is and how far along but my little personal experience with it warrants all the fear it gets.

And now one of my favorite people in the whole world, my dad, has cancer.

It certainly feels different when it hits home.  And I’m not hiding the fact that I’m freaking out.

My dad goes into surgery later this week. We hope this reveals that they can get all of the tumor and that it’s not deeper than expected.

I write about this because I’m asking for prayers or your versions of prayers-happy thoughts, healing vibes, positive energy, etc, to be sent towards my dad.  I believe it helps.  I truly do.  So even if you take just one second to send a positive thought his way, I thank you. So much.

XOXO,

Sysy

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

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.

Diabetes Art Day 2012

Today is Diabetes Art Day!  Did you know art can be a form of healing therapy and that you don’t have to be “good” at it to reap the benefits of it?  Today, artists and non-artists make art about diabetes to express their feelings, make a statement, or just have fun.  You can view the Diabetes Art Day Page and check out all the wonderful submissions here.

My sister Ana, who has type 1 diabetes, is a studio art major in her fourth year at James Madison University.  She made this awesome piece:

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Happy Diabetes Art Day!

XOXO

Caring About Health is Patriotic

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“It is the mark of an educated mind to be able to entertain a thought without accepting it.”

~Aristotle

This isn’t a political post.  It’s a post directed at you and me, the individual, who makes up our place and culture.  We have a lot of power in our hands and we should use it.

It’s always been clear to me that a holistic approach to all things in life is a good idea.  After all, holistic simply refers to an emphasis on the whole and the interconnectedness of all the parts.  It has nothing to do with shunning modern medicine or being a vegan.

When it comes to health, holistic just means that there should be an awareness on the whole.  So in the case of a person in terms of being a patient, it means that their emotional and mental state matters as much as their physical state.  It’s all connected and everything has the potential to affect everything else in the body, mind, and spirit.

Is a cheap and effective treatment somehow less than an expensive and equally effective treatment?

Our modern healthcare system seems to think so.  There are hundreds of equally effective, safe, inexpensive treatments for ailments out there but our system almost always defaults on the high tech, risky, and extremely expensive ones instead.  In the end, we’re bankrupt and unable to sustain any health.

So I think now, more than ever, do we need to recognize that grandma new a few things about preventative health and natural remedies and combine that knowledge with the fantastic information we have today.  It’s about integrating allopathic and alternative medicine for the best possible outcome for the patient.  It’s Integrative Medicine and we should have never been so cocky as to rely only on expensive drugs while forgetting all the simple tools for prevention.

I know it’s hard to learn about something that isn’t interesting.  I’m lucky in a sense because I love reading about this stuff but I know it’s not that way for everyone and I respect that.  But, I would say that it’s imperative that we all not only research on the presidential candidates as part of our good citizen job requirements but that we also learn more about health and wellness.

I don’t mean anything fancy or intricate, I mean, watch a few documentaries, learn about our food and health system.  The first step to better health is an increased awareness about how we live.  And think of how important good health is for a country.  Part of our duty as citizens is to do what each of us can to ensure good health for ourselves and our children.

This is all important to you because if you don’t feel well, good luck on reaching your hopes and dreams.  Feeling less than great or feeling ill really puts a damper on one’s plans.  And since life is generally challenging enough, we don’t need to add health-related obstacles into the mix.

I think much of our problems in this area stem from our culture and the way we tend to follow what is mainstream, feel a bit nervous about straying from the norm, and fail to question authority and common knowledge.  Common knowledge isn’t necessarily accurate knowledge.  And questioning isn’t harmful, it’s just investigating, double checking, being sure that something is the right way to go.

So I guess what I’m saying here is that I hope our state of affairs will inspire us all to take some time to educate ourselves about how people have stayed healthy over the years.  How did people manage before modern medicine?  Why do some cultures have much better health than ours?  What can we adjust in order to save ourselves and our kids?  Health-wise, our ship is sinking.  But rather than despair, we just need to be the spirited, proactive people we are, before it’s too late.

I grew up wanting to be a doctor, totally impressed by what they do.  I didn’t know how much power I had as one simple person. Once I educated myself a little and safely adjusted my lifestyle, I was blown away by how cheaply and simply I could heal my body and stay healthy.  If most of us could manage something like this, we’d all have a lot more health, happiness, and money in our pockets and then a lot more resources and attention to give those with more serious health issues.

And isn’t that what we all want?

No Words

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No words can express the pain the DOC is feeling right now.  One of our most inspiring, genuine, and sweetest members, Meri, who blogs at Our Diabetic Life has lost her husband to cancer this weekend.  She has four boys, three of whom have type 1 diabetes.

I and many others can’t wrap our heads around how this family is supposed to manage.  There is a huge emotional impact coupled with a financial and physical one that will be very heavy to bear.

I find myself wanting to help but don’t know how.  All I’ve been able to do is donate to help cover the costs associated with this family’s tough journey.  I blog to let you all know about this family and to let you all know that there is a way to help if you feel so moved.

Please send your prayers, thoughts, positive vibes and energy, financial donation-anything you can to help.

I find having type 1 diabetes a lot of work-just for myself.  This woman is going to have to manage her three son’s diabetes and deal with the loss of her soul mate and partner in parenting at the same time.  I simply can’t fathom this.  I cry just thinking about it.

But knowing Meri through her blog, I’ve found out that she and her family is the definition of strength and grace and faith under pressure.  We don’t ever want them to feel alone on this tough road ahead.  We’ve come to know them as part of our DOC family.

So again, if you can help, here is the link.

I’ll be back soon with blogging.  Right now, it doesn’t feel right to write about anything else.

Thanks for reading.

September/October Resolutions 2012

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“If you want to live a happy life, tie it to a goal, not to people or things.” 
~Albert Einstein

My goal for the past two months was to focus on finishing my nutrition school studies (check!) and get through A1c Champions training (check! check!).

I’m excited to move onto the next two months with more time on my hands.

Ana’s goal for these next two months is to get informed on the presidential candidates and vote.  I think this is the first time Ana will be old enough to vote (right?) so yayy Ana!

My goal for these next two months is to focus on diabetes advocacy.

I plan on giving a lecture about diabetes somewhere in town.  I plan on blogging often again.  And I hope to support all those great initiatives out there in the world of diabetes advocacy leading up to diabetes awareness month.  I’ll let you know what those are so you can help, too!

Remember, if not us, then who?

“Kids First, Diabetes Second” Book Review

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“Kids First, Diabetes Second” is the first book by Leighann Calentine, who has a young daughter with type 1 diabetes and writes the popular blog D-mom.com.

This book is for someone who has a child with type 1 diabetes.  Whether your child has just been diagnosed or has had diabetes for a while, this book would be a great resource to have at home.

Leighann seems to be one of those moms that is really organized and determined to figure things out.  Her child has only had type 1 for six years and yet she has worked to bring order and efficiency to their routine all the while, prioritizing her child’s experience of childhood.

I really respect these efforts.  I think it’s very sweet to see parents work so hard to acknowledge their child’s feelings and unique struggle while still taking care of their health with something as delicate and volatile as type 1 diabetes.

This book has helpful and practical information on many common scenarios involved in raising a child with type 1 diabetes like school, birthday parties, sports, and play dates.

I would definitely recommend it to anyone and everyone who has a child with diabetes.  Leighann is one smart cookie and I would expect anyone to get lots of value from this book.

That said, speaking as someone who did grow up with type 1 diabetes and is now an adult who can look back, I’d like to share a little bit from my experience.  It’s unique to me but perhaps not so uncommon and I think it may serve as a gentle reminder on the emphasis we may give diabetes:

Now that I’m 29, I can honestly say I don’t regret those times I felt left out at school.  They didn’t scar me.  The times I went to birthday parties and couldn’t have cake were not big deals.  Or maybe at the time they were to my young mind, but I learned to appreciate the true meaning in a get together, which was the friendship and fun and laughter involved.  Other kids may react differently to experiences like this so I understand that everything varies depending on the personality of one’s child.

Now that I’m 29, what I do regret are all the times my blood sugar was less than great as a child with diabetes.  Childhood is a short period of time compared with adulthood.  To face complications in young adulthood is a scary thought or reality that no cake or ice cream could ever relieve.  In adulthood we contemplate having a family and we need to be healthy to do this.  In adulthood we need to get through school or some kind of learning experience and be productive and build a life for ourselves and it really helps to be healthy.  For our bodies to grow appropriately in childhood and our brains to develop well we need stable blood sugar management.

I tricked my parents as a kid, so they’d see a good number on the meter when really, I had mixed my blood with saliva to shield them from a high.  But their efforts were very much on keeping our blood sugars controlled even if it meant missing out on something edible and delicious.

Looking back I feel as if it was a gift and a lesson to me and now I can say that I’m not worried about fitting in or missing out on foods and I’m more concerned with being true to my unique self and focusing on the bigger picture.

To me, part of the bigger picture is that our society and it’s habits around food are in such a dangerous state, that instead of figuring out how I can fit in it, I am figuring out how to live well despite it even if it means not enjoying many things.  Actually, I’ve learned new things to enjoy so that I don’t feel deprived, my blood sugars stay stable, and I’m also leading the way for my family.

I am teaching my two young children not to fit in to the American way of eating and many aspects of the American way of living because I don’t see it as healthy.  And I hope that makes it easier for them to be healthy and happy adults who instead of figuring out how to fit in, choose a better alternative.

So while I have NO DOUBT that Leighann will raise a healthy and intelligent daughter with diabetes and her book is full of information that is not to be missed, I hope you’ll keep in mind that as a child enters adulthood, diabetes may tie for first.  It ties for first in my life and I’m ok with that because I have found no other way to stay very healthy.  And that allows me so many more pleasures in what I hope will be a long, long life.

To buy this excellent book, go here.