Category Archives: headline

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?

Clarifying Our Message as DOC Bloggers

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In talking with a friend recently, I thought about how bipolar diabetes blogs may seem to the outsider.  Often, in the DOC or Diabetes Online Community, people blog about how we are empowered patients, how we are happy despite our serious condition, how we like to be called “people with diabetes” instead of “diabetics”, and how we are lucky to have an illness that we can have so much control over.

On the flip side, it’s not unusual to read a diabetes blog that seems written for an audience who isn’t aware of the ins and outs of diabetes.  It’s common to read blogs about how miserable diabetes can make us, how our rights are infringed upon, how others aren’t sensitive enough to our plight, and how we feel like complete failures for living with a condition that is as misunderstood as it is impossible to perfectly control.

Many of us feel a need and an impulse to talk about our feelings on our blogs.  And since feelings come and go and their intensity ebbs and flows, this gives the appearance of instability.  The overwhelming majority of people who read diabetes blogs have diabetes so traditionally, this hasn’t been an issue.

Many of us also feel compelled to advocate on behalf of our condition and those who have it and therefore we write posts that are aimed at those who don’t understand diabetes and may need some educating and awareness on the topic.  And this works to some extent because family and friends who don’t have diabetes tend to read our blogs.

However, you can see how limiting this is.  Friends and family are already more compassionate to what we experience in life so who else is reading a diabetes blog to learn more?  A few doctors perhaps?  The newly diagnosed.

For those who start reading a diabetes blog without knowing much about diabetes, it’s understandable that the impression they get from the DOC is that “these people need to make up their minds!”  Are we happy and triumphant e-patients who are the boss of our chronic condition or the miserable and depressed victims of a terrible uncontrollable disease?  Well, we’re both and everything in between.

This is understood by me and all you other people with diabetes out there so it’s no biggie.  Except, lately, formal advocacy efforts and the media have both become very intertwined with us bloggers.  And I believe this means we need to amplify our awareness a bit about our writing.  We need to be very careful about how we say what we say.  Is this a drag?  Kind of, yeah.  But, with power and influence comes responsibility and as diabetes bloggers we are essentially representing other people with diabetes, disclaimer or not.

I don’t mean we don’t blog about what we want and say what we want.  But I think there are a few things we could do to help.  Here’s what I mean: (by the way I’ll be working on these myself)

1.  Be clear who your audience is.  Are you writing to those who don’t know about diabetes?  If so, make sure that’s clear to the reader.

2.  Be clear about which type of diabetes you’re talking about.  We need to ban together to make the types of diabetes more clearly distinguished by society.

3.  Before you publish your post, read it as if you were a newly diagnosed or the loved one of a newly diagnosed.  Do you feel like jumping off a bridge?  Consider adding a little something so the reader understands you and is put at ease.  Example:  Writing about how tired and depressed you are to be battling diabetes?  Think of one positive thing and add it.  It will help you and them.  At the very least make sure a reader can gather that you are simply expelling emotions that do not represent 100% of your emotional repertoire.

4.  Be careful about using absolute statements about diabetes.  It isn’t all good, bad, uncontrollable, controllable, easy, hard, always, or never.  If it is that way for you, preface with “I think” or some other sign of ownership.  Also, be careful with citing studies as proof for an absolute statement about diabetes.  Even studies are wishy washy.  They can’t help it.  We’re working with a zillion factors here.

5.  Be careful with causation and causality.  Learn the difference.  Just because your mom breastfed you and you still got diabetes doesn’t mean that breastfeeding doesn’t lower the risk for others-to the tipping point of them not developing type 1.  Just because someone is a thin type 2 doesn’t mean obesity doesn’t raise one’s risk for type 2 diabetes.  Just because someone is thin doesn’t mean they don’t have a high body mass index and aren’t clinically overweight.  When we say something isn’t true based on our very limited experience/knowledge, we’re not doing our community any favors.

I’m astounded by how bloggers are given more and more attention and opportunities to represent our community.  I think it’s fabulous.  I also think we could be a little more prepared so that when our time comes, we represent our community in the most helpful way possible.

Because working towards awareness, compassion, understanding, and a cure is something we’ll only achieve together.  And I know we all want those things.

Here’s a thought provoking post from Nathan of Edibles…The Diabetic Edition that I’d love for you to check out.  His insight helped spark the thoughts for this post.

“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.

“Sex and Diabetes” Book Review

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Sex and diabetes can go together, I’ve learned, but I’ll be the first to admit there are unique challenges involved.  These were mostly private ruminations that I assumed were not common or normal until last year when I attended the Diabetes Sisters Conference for Women and was present at a discussion about the topic in a room full of nothing but women.

Then the truth came out.

Women were saying things like, “I know I’m low when 20 minutes has passed and I’m not getting anywhere” and “I’m tired of the monthly infections!” and “How can I increase…ya know, moisture?”  All the while, many other women nodded their heads in solemn agreement.

So I thought, “Oh, it’s the diabetes”.

Now this does not mean that if someone has diabetes that sex will be any different than if they didn’t have diabetes.  It just means that it’s likely that having diabetes will present a few tricky challenges in this department.

I’m not going to go on making some of you squeamishly uncomfortable but I will say that there is no shame in learning more about this subject.  In fact, it’s commendable because we know that in a relationship, sex IS important and the quality aspect absolutely matters.

So, I’d like to recommend the book, Sex and Diabetes, by Janis Rozler, RD, CDE, LDN and Donna Rice, MBA, BSN, RN, CDE.  All those random letters means they are professionals ;)

I actually got to hear Janis Rozler speak a few months ago.  She was awesome.  She understands what worries are going on in our heads and her attitude is a very empowered one that is infectious and encourages us to work on our issues with sex in relation to diabetes because it’s worth it!

Anyway, the book pleasantly surprised me.  It made me laugh, it touched on emotional intimacy, it shared interesting historic romance tidbits such as Cleopatra and Anthony’s relationship. (Talk about a power couple!)

The book gives a lot of practical information and tips such as how to talk to your doctor about issues and how to keep your body healthy.  It even shares information on supplements such as which are helpful and which are scams. The book also dives into some awesome relationship communication techniques that I really appreciated.

Sex and Diabetes goes into topics for women and for men and with an open, friendly tone and makes the point that there are many ways to work to make sex and intimacy better.  On that note, I love how sex and intimacy are not separated in this book.  The authors focus on sex in a meaningful relationship because only then can two people really work around any diabetes related challenges they may encounter.  And while there are challenges, there are solutions.  Indeed there are, and this book covers them all.

Great job, ladies.

You can buy the book here.

And Then There Were Three

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Most of you already know my sister Ana and I were diagnosed with type 1 diabetes in 1994 when she was 3 and I was 11.  We have another sister and two brothers totaling five kids in the family.  Three weeks ago, my 27 year old brother, Alejandro, went to the doctor feeling sick and came out shocked to find out it was type 1 diabetes.

Three out of five of us?

I can’t even wrap my head around it.

As for my brother, he’s been doing well.  Without my influence, he’s decided to avoid giving extra shots of insulin here and there and keep the insulin dosage low by avoiding processed food and lots of carbs.  Luckily, he likes vegetables and low carb protein sources like meat, poultry, and nuts.  He’s aware of how having diabetes can give someone more compassion and meaning in life.  He’s trying to figure out how to best carry his meter around.  Any guys out there with ideas as to how you do it?  Girls do seem to have it easier with their huge purses.

I’m glad that my brother is a fast learner (though I wasn’t always-it’s not fun to share Algebra II class with your 1.5 years younger brother).  But I’ve been really disappointed however, in the way that his health care provider has handled his case.

They didn’t have him see a dietitian for carb counting lessons or make sure he saw a diabetes educator.  He doesn’t even have any follow up appointments scheduled.  They sent him home with dangerously high blood sugar and only some long acting insulin to lower it.  Later, they gave him fast acting insulin and told him to give 6 units before meals.  They didn’t go into how fast acting worked with meals so he had to suffer some major lows since his meals were low carb.  They told him to give his insulin right when he started eating, no matter what his blood sugar was prior to eating.  Of course, he’s heard different things from my sister and I and this has caused some confusion.  Everyone thinks they should listen to the doctor, right?  They also didn’t make him aware of how to handle lows, how many carbs to take in, and no glucagon was mentioned or prescribed.

Luckily, he does have a family that knows loads about type 1 diabetes but what if he didn’t?  The way they “take care” of a newly diagnosed sounds deadly to me.  And that seriously disturbs me because type 1 diabetes is tricky and challenging enough with all the information necessary.

I now have two siblings with type 1 and an uncle with type 1.  What’s up with our genes?  Is it the water?  What is it?  So many questions…

Either way, I’m more committed than ever to help people with diabetes understand that knowledge is power and that we can do this and live great lives.  And by watching the changes in my brother’s life, I’m also reminded of how life changing a cure would be for all of us.

Any words of support or encouragement you can leave my brother?  I’d be so appreciative :)  Let’s let him know how great this community is!

The Way Kids Do It

 

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I’m the one in the “cool” mighty ducks shirt.

When I was a 13 year old 8th grader I got to go to Washington D.C. on a field trip with my school.  It was my first over night field trip and I was beyond thrilled to be on my own for a few days.  One of my best friend’s sat next to me on the bus.  I can recall crying together when we saw the thousands of names of the soldiers at a war memorial.  We giggled about the Presidents (can’t remember that inside joke).  We stood in long lines in the scorching sun, waiting up to an hour at a time just to get a passing glimpse of the Declaration of Independence, Honest Abe, and the Washington Memorial.

I do have fond memories of that trip.  But I also remember the way diabetes almost ruined it, and totally would have had I not been a 13 year old kid.  I was high most of the time on the trip and therefore felt sick.  All the time waiting in the sun probably didn’t help matters.  The worst was my need to pee ALL the time and only being able to when the schedule allowed it.

I wanted to cry my urine out of my freaking eye balls.  I seriously did.  I needed to pee so bad but couldn’t.  Teachers told us to hold it.  No one understood that my high blood sugar made me need to attack the water fountains and go more often but I wasn’t about to say so in front of all my peers.  I got a nick name on that trip that lasted a while.  “Pee-Pee Sysy”  It’s ok.  I am not one to get bitter about things like that.  I would have called me that, too, the way I jumped up and down in line all day with my friends, saying that I really needed “to go”.  Humor actually helped me survive the trip.  It was essential.

I was so excited about eating at my first Hard Rock Café when I asked my teacher for my insulin and with a panicked look on her face, she realized they had left it on the bus which had left us at the restaurant.  I wasn’t allowed to carry my own insulin because the school policy deemed me too young to carry around a prescription drug and needles around and now my teachers forgot it?  Oh it got better- after all the teachers huddled together about the issue they gave me a stern talking to.  They asked me how I could manage to forget reminding them about my insulin.  I was disappointed at these “adults”, who by the way, were and ironically still are some of my favorite teachers.  Deep down I knew I could now sue the school.  But being young and shy and completely furious, I didn’t even say a word back.

I wanted to let them know that they had no right to take their fear out on me when they very well knew that I was to have my insulin available to me at all times, that they should just admit their mistake instead of make me feel worse than I already would feel.  But I said I’d be ok and I ordered a diet coke that I sipped somberly while all my classmates ate their burgers.  After an hour I checked my blood sugar and saw I had gone up to 350.  I gave insulin a few hours later when we got back to the bus and since it was those old R and NPH insulin, the dosage pushed me off schedule and messed up my numbers more than they already were.

I cried myself to sleep that night, exhausted by the way diabetes made my life and how it couldn’t even butt out of a once-in-a-lifetime 8th grade field trip.  I had made the A/B Honor Roll, I did well in track that year.  I was always nice to my teachers.  I didn’t deserve any of this.

The next day I felt unexpectedly relieved to be heading home.  No more holding my bladder.  I’d get help from my parents with my diabetes and I’d have my insulin back in my possession, where it belonged.

And then as if nothing unfortunate ever happened, as if I never had diabetes at all, I thought about nothing but all the good memories from the trip.

That’s the way kids do it.  And for those with diabetes, it’s a miraculous saving grace.

Gummy Owls for Weight Loss

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I was sent some Gummy Owls to review.  I was really skeptical because they are for weight loss and I try to focus on avoiding weight loss supplements.  However, I would never judge a product without investigating it so I decided to learn about these Gummy Owls and try them out.

What they are is a natural aid for weight loss made out of yam fiber.  Essentially they make you feel full, naturally, so you don’t overeat at meals.  I appreciated that they don’t taste horrible, but they don’t taste like candy either (that would be a problem for some).

Basically, I would just take 3, 30 minutes before a meal with a tall glass of water.  They made me feel so full I could only eat half of my meal.  For those who need to lose a lot of weight, I can see how this may help that happen.  Unless someone doesn’t mind eating while feeling miserably full, that is.

I have been wanting to lose weight recently because a two month stint with birth control pills helped me use 50% more insulin than I’m used to and so I gained weight.  I tried these for a few weeks and lost several pounds, despite exercising less than I’m used to.

A word of caution with these.  You will want to follow the directions and take one at a time at first because you’ll want your body to adjust to small amount of sugar alcohols in the gummies.  Taking a handful right off the bat may cause you intestinal distress.  Nothing deadly, but you won’t appreciate the symptoms.

If your overeating is not caused by anxiety and you want to lose weight, this is a pretty helpful product that will certainly make it hard for you to eat more than a small, appropriate amount of food at each meal.  With that said, I’d recommend this for meals you’re eating that don’t include the healthiest of foods.

No stimulants, gluten, or scary chemicals.  Not bad at all.

Go here to order or learn more :)

Spending on our Diabetes Supplies

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Here’s my story-I used to get very caught up with how I was going to afford my diabetes medications and supplies.  I would make a yearly budget list of things I wanted to spend money on and I would include all my diabetes stuff on that list.  Then throughout the year I’d make choices from that list as money came in.  I ended up putting off my diabetes related purchases until the last moment or until I was broke and had to ask my parents for a loan.

This was no dignified way to live.  I felt upset every time I did spend money on my diabetes thinking, “This is so unfair, with what I spend on my diabetes, I could have gone to Europe for a month by now!”  And perhaps that’s the truth.  BUT…didn’t I have a high value placed on my health?  Didn’t I realize diabetes wasn’t going to go away and that if I was healthy, I was able to do more things?

I began realizing that my diabetes related purchases needed to be on a list of things that I must spend money on.  And in fact, those purchases needed to be at the top of the list because health really should be my priority.

I was bitter for years because I was giving up small vacations, clothes, cds, and other things I wanted to buy because that extra money was going to my diabetes.  I didn’t like feeling this way so I started working on changing the way I thought.

I realized I was choosing to be miserable, yet healthy when I could choose to be content and healthy.  So I decided to continue prioritizing my diabetes but I also began working towards a goal of getting a new job and making more money.  In the meantime, I’d try to take pleasure in the simple things like friends and family and focus on what I DID have.

Eventually I got to where I’m at now.  Paying for my insulin and strips is just like paying the monthly rent.  I don’t even think about it.  I need it.  I’m grateful to be able to pay for it.  And instead of being upset about it, I’m spending that energy on much better things.

In the end, it’s all worked out better than I ever dreamed.  Some people cannot afford their diabetes supplies.  Some don’t have the choice.  For those of us who do, let’s make it in favor of our health and the rest will fall into place.

It’s the Highs that Worry Me

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It’s 12:48am and I’m 243.  I’m waiting for my high to come down.  I never go to sleep high because I don’t want a low in the middle of the night and I don’t want to sleep through a high that continues longer than it needs to.  Normally I’d set an alarm but it wakes my husband, who gets up at 5am each morning in the summer so I try to spare him the interrupted sleep.

I’m thinking about how so many people’s fear about having diabetes is centered on low blood sugars.  I understand but for me…I don’t fear low blood sugars very much and they only cause me anxiety when I’m in the midst of a bad one.

I fear the highs.

For me, the thought of a slow descent into diabetes complications is scarier than a sudden death in the middle of the night from a low.  I’m afraid of suffering.  I feel like I’ve already suffered enough.  I’m afraid of becoming a burden to others.  Alex has tried to help me through this.  We used to know an older couple.  The lady had rheumatoid arthritis and was bound to a wheelchair for decades.  Her husband was loyal, loving, and attentive.  I was always moved by that.  And in a way, I felt sorry for her.  Because I felt that in her position, I’d feel as if I was a burden.  Not my proudest thought…but it’s just a fear of mine.  In fact, I’ve been afraid of getting old  since I was 5.  One day I watched the couple and Alex caught me gazing at them.  He said, “If you ever need me to be that way with you, I will, ya know.”  This was a few months before we got married and I felt assured that I was marrying someone who truly believed in the “in sickness and in health” idea.

But I’m still afraid.

Few things bring me more joy and pleasure than feeling my body be healthy, energetic, and pain free.  It’s something I have always put a lot of value on.  Though some of the preoccupation may be vanity, mostly I just feel happy when my body doesn’t complain when I use it.

Maybe I feel this way because I’ve dealt with plenty of body aches and pains and medical issues.  I wear glasses, I’ve had knee pain since age 13, I’ve had carpel tunnel syndrome and tendonitis, tons of severe headaches, chronic sinusitis for years, major cramps from PMS and PCOS, killer kidney stone pain on numerous occasions, and an easily unsettled stomach since forever.

Honestly, a day with no body pain and great blood sugars is like heaven and doesn’t come around often.  I don’t need anything but that.  I think this aspect of me has lead me to want this for others, too.  It’s like a healthy body is a gateway for so many other wonderful things in life.  Possibilities are easier to grasp.  One’s mood is so much easier to keep up.

I fear complications with diabetes robbing me of my relatively healthy body.  I am doing all I can to prevent them but I wish I could put the fear on hold.  To be honest, I don’t linger on these feelings often.  Usually they’re a fleeting thought.  And I think they’re a residue of all the years I spent misinformed about my chances for the risks of complications.  I wasn’t aware that good control would reduce my risks.  I was told this but I didn’t believe it because I didn’t think good control was possible.  Now I have pretty good control and some of those old feelings have stuck around.  It’s time to let them go isn’t it?

Goodnight all, though I’ll be up for a little while longer.