Tag Archives: diabetes advocacy

The 5 Stages of Grief Apply to Diabetes

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You know how when someone dies, a loved one often goes through stages of grief which are denial, anger, bargaining, depression, and finally, acceptance?

I think that when someone gets a diabetes diagnosis, they go through those same phases.  No one has died in this case but something has-life as we know it.  Our lives matter a lot to us, there is no denying that.  So when a doctor informs us that we have a disease that will last the rest of our lifetime, requires constant monitoring and care, changes to habits and routines we may have in place, and causes all sorts potential health problems that bring about inconvenience and pain…well, it’s not unlike experiencing the death of a loved one.

I’m not saying it’s as painful as experiencing the death of a loved one.  I’m just saying the stages of grief are the same.  For example, when I was diagnosed with type 1 diabetes at age 11, my first inclination was to be like…”noo……really?”  I quickly got angry and though I didn’t show it, I know it because my diary at the time has a page on it where I wrote, “Damn diabetes, I hate you!”  The letters are made out in straight lines and you can tell I pressed down really hard, accentuating each stroke with multiple slashes from my ball point pen.  Next came bargaining.  I grew up in a place where almost everyone is religious and so friends would take me to their churches in hopes that their pastor could “cure me”.  I went along because deep down I wished someone could.  I also didn’t even think a single cuss word between the ages of 12 and 14 in an effort to be “good” enough for God to cure.

Then came depression.  This stage lasted a long, long time.  Many years in fact.  There are catalysts that move us out from the first few stages of grief.  We can’t physically handle staying in shock and in denial for too long.  We only have so much adrenaline and reality is a very persistent nag.  Anger usually leads to self-destruction and it wears us out until we realize it doesn’t improve anything.  It doesn’t take long to figure out that bargaining isn’t going to cure us.  But depression is a disease.  It eats at our brains and takes away our strength every day.  Depression literally changes the chemicals in our brains.  So people often hang out at this stage for a long time.  I was no different.

Acceptance.  It’s so empowering, so forgiving.  When we reach this stage a sense of peace comes over us.  The thick cloud of our diagnosis lifts and we are able to hope, be inspired, and dream about our future.  Life isn’t a drag anymore and our diagnosis might actually do the unexpected-bear gifts.  We can move forward.  We see potential and possibilities.  We know we are going to be ok.

If you’re a diabetic and haven’t reached the final stage of acceptance, please know that you can.  You just have to give yourself time to heal and time to learn about what your diabetes management requires.  Nothing is wrong with you for grieving the loss of the life you once knew.  And you have permission to move ahead when you’re ready.  Get help for the tough days and look forward to the better ones.

They are coming.

Have No Fear…

It’s Fabulous Friday and I just want to send out this reminder to everyone through my sister, Ana’s art:

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“Have no fear of perfection…you’ll never reach it.” -SD

Well that takes a load off! lol

Have a great weekend!

Paula Deen and Her Type 2 Diabetes

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Those are some white teeth ya’ll…:)

I do see how some of her comments don’t help us diabetic people out.  She just said that diabetes is “not a life sentence”.  This doesn’t bother me much because I take it into context and I know she is talking about her type 2 diabetes.  However, I do understand that the majority of the world out there doesn’t know that type 1 and 2 are different diseases (though we haven’t actually figured those details out for 100% certain, yet).  Anyway, the point is that I completely understand the frustration to those with diabetes who say, “Wait just one minute!  Diabetes IS life threatening for me and can definitely be for other people with diabetes!”  I get it.  I don’t however, want to punch the lady in the face for not being specific enough when I know she was just trying to spread a little hope to others.  Even if that hope came across a bit rehearsed.  After all, she can most likely pay for any operation she ever needs of pocket and the rest of us, cannot.

I see the backlash on Paula Deen as a way of our collective society screaming out  and saying “I don’t eat enough healthy food and exercise enough and as a result I am not as healthy as I could be and this affects everything in my life”.  We’re speaking through Paula in light of her type 2 diabetes.  I honestly believe that.  We relate to her.  We enjoyed our processed food and then realized the hard way that those delicious foods are hurting us more than they are pleasing us.  Maybe some of us have gained a lot of weight, maybe some developed a thyroid problem, while others might have developed type 2 diabetes thanks to the last kicker of their predisposed genes.  But all of us who have ate a more or less standard American diet HAVE felt the negative consequences of it in some way, shape, or form.  Whether we know it or not.  You see, that food isn’t meant to be abused and since we’re human, and since that food is cheap and convenient and addicting, the easiest thing in the world is to abuse it.  Paula Deen is just one of us.

Those of us who can afford to buy healthy whole foods vote every time we shop.  If we buy cookies and chips every time we go to the store then we have to know that we are part of the ongoing business for these companies who don’t make healthy food.  We help keep them alive.  Does that mean we should be judged for wanting some treats throughout the week?  As a whole I tend to think we have as much power as someone as famous as Paula Deen.  It’s way more complicated than that though isn’t it?  And I assume it’s more complicated for her than we realize, too.

I’ve heard a few people say that they don’t care what Paula does or doesn’t do because it’s none of our business  I believe people’s actions does affect us all.  So I absolutely do care if you are drinking and then driving.  I care if you are making babies over and over again and dropping them all off at an orphanage.  I care if you are dealing with type 2 diabetes.  I care that you have depression.  It affects you if I have type 1 diabetes and if I use up all my FMLA at work and if I smoke and if I neglect my kids and if I find a cure for diabetes (Ah, we’d all like that one wouldn’t we!).  But it’s not a “just don’t hurt me or mine” kind of caring.  It’s a caring that wants good for all.  I don’t want you to drink and drive because you might hurt someone I love or you might hurt some other innocent soul or…you might hurt yourself.  It all matters.

I believe in something between judging and “live and let live” and it’s caring.

That’s how I feel about Paula Deen.  I respect that she has fans and that those fans cook what she teaches them to cook.  I respect that they look up to her as a jolly country hostess who hugs her southern roots, butter, flour, sugar, and sparkling white teeth and blue eyes, and runs with them all the way to the bank.  But, I also know that if she has type 2 diabetes, she suffers and so do her family and friends.  She is a famous type 2 diabetic that others are going to look to as an example.  It’s possible that her diet contributed very much to her diagnosis.  Let’s not pretend that isn’t possible.  Genes aren’t entirely responsible for type 2 diabetes since in most cases obesity is a factor (another issue we shouldn’t judge, by the way).  That doesn’t mean she doesn’t deserve compassion and that doesn’t mean we let her completely off the hook.  But while her diagnosis is her business, her having diabetes is…in an indirect way, our business.  When our society suffers a lot of health problems, we all suffer.  The solution isn’t pointing fingers though, it’s just caring.  After all, the most charming and successful kind of family I’ve ever known is the non-judging, forgiving, communicative, confronting, nosy one.  If we act that way more often as a people, as a society, wonderful changes will come our way.

I think we can say that we want her to be straightforward and sincere and responsible with her position as a famous person with type 2 diabetes and the implications of that.  I think most people rise up to the occasion when we kindly demand that.  Especially if we expect them to with open arms.

As a fellow southern gal, I have a feeling Paula Deen will help us out if we expect her to.  Call me naïve.  The ongoing insults will only make her hide in a closet.  A closet that’s probably as big as a mansion, but still.  We can call her out but do so respectfully. We can ask her questions and persist to get them answered.  If I were her and I read all what is being said online, I’d stick my head in an apple pie for all eternity.  We don’t want that.  We want her on our side.  We gotta stick together, folks.  Diabetes or no diabetes, we’re all in this together.

Clinical Trials from Home!

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Clinical trials are an important part of the online health community but people have a hard time with distance and time limitations. Through WEGO Health, I just learned about a new type of clinical trial that can be completed by patients from the comfort of their own home and I wanted to make sure to share it with readers and fellow DOC members.

For those of you who aren’t familiar with WEGO Health, they’re a unique social media company focused on helping Health Activists – people like me who use the internet and social media to connect with others around health topics. WEGO Health’s mission is to empower Health Activists to help others, and they offer Health Activists the chance to get involved with video through WEGOHealth.tv, to learn and connect through webinars and chats, and to gain a voice in the healthcare industry through insight panels and the Health Activist Speakers Bureau.  In fact, I’ll be in Washington DC this Spring because of this Speakers Bureau and the opportunity it opened up. (I’m beyond excited!)

Now, WEGO Health is working with Mytrus – an innovative clinical trials company that is working to make clinical trials more accessible, convenient, and available to a much larger audience with more representative results. WEGO Health is working to bring these new trials to Health Activists and to give us a way to share them with our larger online community. I’m participating in a new Referral Program that rewards Health Activists for participants in the clinical trial.

The benefits of at-home trials:

  • Participants can join from anywhere in the country allowing trials to be run with a larger and more diverse group of patients
  • Participants can join from their home so are not limited by health issues or transportation issues that keep them house-bound
  • Trials can be run more quickly and efficiently because of a reduced recruitment period
  • Patients are given more of a chance to affect the course of their own treatment

If you’re interested in participating in clinical trials run at home and online and in impacting the course of new medications and treatments, take a brief survey to see if you qualify for any of the active trials. If not, you’ll be notified as new opportunities come up.

To see if you qualify, visit this page: At Home Clinical Trials.

I’m excited by the new option of participating in clinical trials from home (and online!) and I’m excited to share it with you. I hope you’ll take a minute to see if you qualify and share this opportunity with others. Click here to share.

Happy Monday everyone!

We’re in Diabetes Forecast Magazine!

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I’m supposed to be all cool and say “hey everyone, why not check us out, we’re in Diabetes Forecast”, but I can’t!

In truth, I’m flipping out because I remember thinking “wow…” to all the inspiring stories I read in each issue as a child with diabetes.  So to be in it…is kind of totally amazing!

We’re in an article talking about teamwork in this December 2011 issue and we’d be so honored if you read it:

Teamwork:  Banding Together to Tackle Diabetes

By the way, thank you for reading.  Without you this blog is an awfully lonely place!

Two Must Read Posts

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On the subject of diabetes advocacy and the above ad, I’ve read two tremendous posts that encapsulate my feelings on the subject and many other people’s feelings.

Sometimes there is no use writing when others have said it best.

I highly recommend Jessica Apple’s post:

This Diabetes Awareness Month Tell the World You Aren’t Equal

And Riva Greenberg’s post:

Diabetes’ JDRF Tries Shock Ad to Push the FDA


What do you think?  Should we tell the world about our real vulnerabilities with diabetes?  Do you think it would help gather more support?

World Diabetes Day 2011

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This morning I woke up at 4am with a low blood sugar.  I treated it and went back to sleep until my husband woke me up at 5am.  This is when he gets up to go to work and when I get up to write before the kids are up.  My blood sugar was low again.  I treated it, again.  And then got to writing.  I pricked my finger a third time by 8am to find out I finally was up to 150.  I gave an insulin shot to correct that slight high.  Only 8am and I’ve already met with 4 needles.

After 17 years with type 1 diabetes, I’ve had thousands upon thousands of finger pricks and injections.  I’ve witnessed my loved ones worry over me.  I’ve developed bits of anxiety and depression that make living with diabetes harder than it already is.  I’ve watched people make not so good health choices and wondered if I’d still be worse off than them, while I often make better health choices.  Some days I ask myself if all the hard work is worth it.

Today, on Diabetes World Day, I want others to know that I have Type 1 Diabetes and while I’m not a victim, I am suffering.  I am not helpless, but I do deserve awareness, support, and a cure.  Every day, people with diabetes die because they didn’t get access to insulin or other diabetes supplies.  Every day, people with diabetes die because they didn’t get access to life saving information.  Even in the United States.  People with diabetes suffer because our society in general, is very ignorant about the disease.

Today, we ask for a little awareness.  We want people to know what diabetes is, the difference between type 1 and type 2, and how it affects all of us, globally.  We want people to know that we don’t want pity.  We want a chance.  A chance to live well with this disease and a chance to one day be cured.  A young child shouldn’t have to be held down as his teary mother injects his arm with life saving insulin.  A young woman shouldn’t have to worry that one day having children will not be possible.  A man shouldn’t feel that he is any less of a man because of diabetes.  And what all these people have in common is they don’t want others to judge them and think they don’t deserve help and understanding.

For those of us with diabetes, I think we should all walk the walk.  Do we listen to others and their concerns?  Their diseases?  Their challenges in life?  If we give empathy, we’ll get empathy.  And we should unite together, those of us with different types of diabetes, because our cause will only be strong enough if we unite, not if we take a separate road.  And lastly, we have a responsibility to take care of ourselves.  There are people with diabetes who don’t have insulin.  Those of us who do should cherish that fact and do our best to make decisions that will honor those who don’t even have a fighting chance.  Take care of yourself out of self love but also because it’s a way of loving others.  Others who can’t do what we can and others who are watching and learning by the examples we set.

We want those without diabetes to know it’s deadly.  I want those with diabetes to know that you can live well.  It’s definitely a balancing act.  We are empowered patients and yet, we are in urgent need of help.  It’s ok.  We can be both.  And we can spread the word.

To all my fellow people with diabetes, you can do this.  Don’t give up.  Never give up.

XOXO,

5 Reasons Why Food Becomes an Issue for People with Diabetes

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Because diabetes management is also food management, you can imagine, if you don’t have diabetes, that the issue of food for a diabetic, is indeed a complicated one (much like this sentence).

5 Reasons why food becomes an issue for people with diabetes:

1.  Carbohydrates must be consumed to level out a low blood sugar or to prevent one due to active insulin.

This is the case even if you’re not hungry, even if you’re nauseated, even if you are stuffed on Thanksgiving Day.  Carbohydrates are full of calories so weight gain can become an issue if someone is having too many lows.  Carbs are also filling and eating while not hungry or just to fix a low tends to push a person into an unhealthy habit of eating to pacify a symptom (perhaps depression or anxiety) or to fix feelings of fatigue or tiredness.  Next think you know, a person is apt to think they need a snack every time they have a headache or feel weak or are nervous or feel sad.  The list goes on and on and since food really is medicine for people with diabetes, the stable use of food easily derails.

2.  Some foods are much harder than others to cover successfully with insulin, creating a good foods, bad foods war.

A popular idea out there is that there are no bad foods.  I understand the thinking behind that train of thought but personally, I do think there are bad foods.  It all depends on your definition.  For me, something that doesn’t support health but rather damages it, is “bad”.  While you and I might disagree on that, we probably agree on this:  Because rice is trickier to cover with insulin than say, chicken, we get into negative feelings about rice over time.  Not all of us, but if rice doesn’t give you any hurdles, just replace it with whatever does-like pasta or pizza.  The point is that a perfectly healthy food like brown rice can become demonized in our minds simply because of our frustration with it’s complex carb load.  I like brown rice but I almost run from it screaming because of how difficult a time I have covering it with insulin.  I eat a few fork full and I know I need to be done.  It’s a shame that we also find that cheese, often full of saturated fat and sodium, tempts us to eat too much of it because it’s so easy to cover with insulin.

3.  More insulin means more fat so people who use insulin therapy have a unique weight management challenge.

Let me explain.  The more insulin one takes, the more fat they will gain.  So let’s say that I’m having a rough year (which is quite human of me, right?) and as a result I don’t carb count and measure and insulin dose as accurately as I should (also normal human behavior), well, because I’m sometimes giving a little too much insulin and needing more food to cover for that fact and because I’m sometimes giving too little insulin resulting in a higher amount of insulin needed to bring blood sugar down after the fact, I’m apt to gain a few pounds between consuming more calories than I’d like and giving insulin to cover a high blood sugar that a non diabetic never has to worry about.  Phew! The key to weight management is carefully counting carbs and covering those carbs at the right time and with the precise amount of insulin.  That key, my non diabetic friends, is not one that humans hold, it’s in the hands of Zeus and his friends.  So, what do diabetics taking insulin do?  I don’t know but I know what I do, I eat less than most people and I exercise more than most people.  That’s what I do.  Others probably count carbs carefully and probably don’t have a disposition to insulin resistance (which causes one to need more insulin and thus gain more weight).  Still, others eat low carb so that insulin intake is low and so is weight.  The rest of us may have a few extra pounds we could do without, seeing as we didn’t even earn them.  Sigh.  What a dilemma.

4.  Due to the above, it becomes tempting to skimp insulin in order to manage weight.

This is a scary one I’ve never personally tried.  However, it’s a realistic problem for many people with diabetes at some point or another.  Some people get quite desperate to manage their weight that they don’t take their insulin.  This causes high blood sugar, ketones, and body fat burning.  This also causes death and if you or someone you know is doing this, get help ASAP.  I write about this one because while it may seem pathetic to the outsider, it’s not at all.  I understand that it probably starts with just a moment of desperation, a longing to be thin without having to work doubly hard as everyone else.  Diabetes that isn’t tightly managed usually begets unwanted pounds so I can understand how it’s tempting.  But like I said, it’s very dangerous and something that you should never ever do if you have diabetes.

5.  Eating becomes an abnormal event.

When someone who takes insulin before a meal does so, they have to start some math in their heads.  They have to take note that their fast acting insulin begins in about 15-30 minutes.  Then they have to recall their blood sugar and figure out how long it will take the insulin to start pushing down the blood sugar.  If my blood sugar is 150, for example, I don’t eat right away.  I wait about 25 minutes instead of my normal 15 minutes because I want to start eating when my blood sugar is a little lower than 150 but higher than 100.  Are you still following?  OK.  Then, I have to make sure that I eat the amount of carbohydrates that I’ve just given insulin for.  So, when one of my toddlers needs something in the middle of dinner and I get up to do it, that means when I sit back down, I have to now speed eat.  I have to stuff myself to make sure I don’t get a low, providing I don’t already have one.  Or let’s say I’m at a restaurant.  I either try to guess when the food is being brought out or I let my food get a little cold before eating.  Sometimes I’m a little high but I’m hungry so I eat really slowly.  Sometimes I have literally inhaled my meal because of a low.  Either way, I can’t always just sit down and enjoy. my. meal.  This speed eating might also become a habit.  And you know what else?  When we eat while low, we become used to eating when feeling trembly or weak or flushed.  So I’ve noticed when I’m nervous or anxious or tired, I eat really fast!  It’s like I’m used to shoving food in my mouth in an effort to make those symptoms associated with low blood sugar, go away.  Why?  Because when we have a low blood sugar, we’re essentially on the way to death and our body makes us feel really awful so that we get the message, follow what our body is saying, and eat some carbs!  Preferably fast acting carbs.

Diabetes and food, they go together like a knot.

So what can we do?

Ok, this post was all doom and gloom so here is the light at the end of the tunnel.  Next week I’ll post what I have set up as some rules that work rather well for me and others I know.  These rules have helped me enjoy food more and stress over it less.  This doesn’t mean some of the above doesn’t still occur but I have lessened the occurrences which is something.

Coming next week:  5 Helpful Food Rules

Can you think of any other ways that the relationship between food and a person with diabetes is complicated?  If so, share!

Do The Big Blue Test 2011!

An initiative started by the Diabetes Hands Foundation in 2009, the Big Blue Test is an awareness campaign that also gives back and clearly emphasizes the importance of exercise in managing blood sugars.

To participate is super easy: sometime between today and the 14th of November, test, do some activity, test again, and note your results online.  To do that last step, go here, and click on the “Do the Big Blue Test” button.

Each test is a life saving donation of life saving supplies to someone who desperately needs it.  Next time you’re taking a walk, doing a workout, out dancing, or even chasing your kid across the playground, test before and after and note your results online.

Let’s let everyone know that people with diabetes do give back, we do take care of ourselves, and we are powerful in number.   And most of all, let’s get some life saving supplies to those less fortunate than us.

Oh and watch this powerful video and spread the word!  Have a great Tuesday Smile

What the DOC is to Me

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So to start with I want to say I tremendously appreciate the connections, sharing, and activities having to do with the DOC.  I wish I had been able to experience this many years ago as a teenager.  I really do.  Since “connecting” with all of you I have learned countless of practical things.  I have learned lots in the realm of philosophy and have broadened my ideas having to do with diabetes.  I have felt more validated and whole.  I have also been tested and challenged as a result of coming into contact with so many different thoughts and opinions.  It’s all good, albeit sometimes complicated and twisty.

Relationships are challenging, we all know that.  They help us grow.  Growth isn’t easy but it’s very useful because it is assumed we become better human beings in the process and it also provides a sense of fulfillment in life. I think that growth is a big part of being human.

The DOC is like any other relationship.  Have you ever read something on a blog that inspired you to be a better person?  I have.  Have you ever read something on a blog that reached out and poured salt on a wound?   Was it on purpose?  Probably not.  Most likely, a vulnerable area was stirred in you and a challenge to face a truth or face a fear was moved in you and what you experienced was your reaction.

When these reactions happen to me I have tried to learn to think about them.  Instead of come to assumptions, I have to reflect first.  Why did something affect me so?  Why was I touchy or emotional?  Why did those words make me cry?  Why do I agree with someone?  Why do I disagree?  Where is that person coming from?

To me, the DOC is a relationship that is constantly encouraging me to grow.  This is often painful as much as it is exhilarating.  When it gets frustrating, I ask myself why something is having that affect on me.  When it is helpful, I’m simply appreciative.  When it’s overwhelming, I step back for a moment and get some air.  When I come back, the support from others reminds me what it’s all about.

So whether you lurk occasionally or hang out often, do what’s comfortable to you and know that your participation is priceless to others.  Remember that our differing opinions come from our differing circumstances and personalities.  Remember that differing opinions are a thing of value because they reflect a real way of thinking for other people and demonstrate courage to speak up.  This leads to discussions that lead to effective communication which leads to powerful community breakthroughs if people are humble, honest, sincere, and brave.

A powerful force for growth, change, and a better way of life for people with diabetes, that’s what the DOC is to me.