Category Archives: Diabetes and Parenting

The Case for Diabetes Cure Hope

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It takes bravery and guts to hope.  It’s a leap of faith.  There’s a vulnerability in it.  I love those qualities in people so I always encourage myself to feel hopeful about things.  Even if I’d rather put myself in a more protective state and cross my arms, shake my head, and tell myself that hoping is for ignorant suckers.

It’s not.

It’s beautiful and scary and takes patience.  I also believe it sets a very particular vibe that positively touches everyone and everything around it.

This week we heard two news stories come out about diabetes research.  I find them both uplifting because it gives me the feeling that we’re moving in the right direction, that we’re learning more things, and I’m reminded with this news that researchers are working on figuring diabetes out.  All that encourages me.  I’m doing my part by taking care of myself, and they are doing theirs by making strides in research-it’s excellent teamwork.

If I put myself in the frame of mind of a person whose child has type 1 diabetes, and I can’t feel what they feel, only I try to imagine more or less- I admit I feel an overwhelming sense of urgency and desperation.  I have a child that’s very allergic to some common foods and I see that as much easier to handle than a child with type 1 diabetes.  And even with my situation I feel desperation.  I’m anxiously awaiting relief of my way of life which includes more fear, home cooking, and limitations for my daughter and our entire family than we’d otherwise have.  I’m working on this.  I’m constantly trying to keep fear in check, to recognize that home cooking is healthier and cheaper anyway, and trying to see that limitations are only what we view them as.  In other words, I don’t live by the ocean and as a result, don’t get to see it often.  But I don’t view that as a limitation, it’s just the way it is.  Well, we don’t eat out due to allergies and it’s just the way it is for us.  The real tragedy in our case would be lack of food or epi-pens in a time of need.  So perspective and gratitude is huge in our day to day happiness.

However, type 1 in children is a complicated beast that puts a child in danger 24/7.  Is there anything else like that for a child outside of other serious conditions and extremely harsh living environments?  What I’m saying is that the seemingly irrational fear of parents of children with type 1 is something that really deserves our understanding, patience, and compassion.  Hope in their hands regarding a cure for type 1 diabetes is a very fragile thing.  And I’m just saying that I recognize that and cannot judge that position.

On the other hand as someone who made it through childhood with type 1, I feel much less fear and desperation for a cure for myself and unchecked I actually feel a tinge of pride and arrogance about how I’ve made it without a cure and all while being told every five years that the cure was right around the corner.  What did that do to me?  At first I felt like a ragdoll in a child’s hands.  Then I allowed it to give me a little bit of a shell.  A rigid, chilly shell.  But over the years I’ve let that go because like I said earlier, it’s a beautiful thing to feel hope.  I prefer being soft, pliable, open, and able to adapt to change.  I hated how at 13 years old, I felt embarrassed to show positive emotions because of how that emotion could turn sour all of a sudden and someone might witness that and I’d publically lose face.  I secretly preferred and longed to get myself back to a time when I would hear happy news, smile and leap for joy and then have my hopes dashed and suddenly pout and sigh from a sense of loss but soon get over it.  Am I saying I’d like to be like a child again?  Kind of yeah.  I watch my toddlers and am constantly amazed at their range of emotions in such a short time span.  They feel what they feel when they feel it.  Then they let it out, let it go, and move on.  It’s healthy and sweet and vulnerable and I admire and cherish this about them.  I also can’t help but notice that most children do this and it’s partly what allows them to generally learn so quickly, be so happy, and forgive so easily.

So for those of you with a bit of snark about the news that seems blown out of proportion or who feel that you’ve lost all hope and trust because of past promises about a cure, I understand that, too.  But, I wish for you to let go some of the pain from the past because well…it seems like a miserable weight to carry around.  Hope is light and energetic and doubt and sarcasm seem like the opposite.

No matter what, those of us with diabetes have it right now and that means we have to deal with it.  It begs to be managed and so our best bet is to live in the moment with it.  Not easy, I know, but what’s the alternative?  After all, nothing about having hope means ignoring reality-that would be more accurately described as delusion or assumption or arrogance.

But allowing hope to help us through our reality, well that’s it’s greatest purpose isn’t it?

The Way Kids See It

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For many of us with diabetes, our children will grow up watching us check our blood sugars, inject insulin or be connected to a pump, desperately shove sugar into our mouths, and not find any bit of it strange.

And the only time it becomes something they stop and ponder may be when a friend or someone from the outside asks questions about it.  “What’s your mom doing?”  “What’s wrong with her-is she sick?”

They will explain we have diabetes and that we have to check our blood sugars and take medicine for it.  It won’t even be a big deal.

Their reality of our having diabetes should be ours.

Focusing on wishing we didn’t have diabetes only hinders us and distracts us from all the diabetes related decisions we need to make every day.  We need all our energy for managing this thing.

For our children, it just “is” this way.  And for us to gain full acceptance of our diabetes we can try looking at it the same way, it just “is”.  That’s our reality.  Now what are we going to do with it?

Or better yet, what example are we going to give our kids about facing our reality and living life to the fullest?

10 Random Things from the Author of The Girl’s Guide to Diabetes

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Hi!  I’ve been away from the blog longer than ever since it started 3.5 years ago.  That ends today.  But, here is what has been consuming my thoughts and making writing about diabetes a lower priority:

1.  Travelling with diabetes is challenging.  I’ve really been working at getting the knack of it.  I don’t want it to be bad for my health you know?  The other day, I tried my best to check my blood sugar in line at the airport where you put your things in cubbies to get scanned and just as I put the blood in the strip the scanner sucked my cubby with my meter in it inside to be scanned and I had to ask the lady at the scanner, “Excuse me, what number do you see on my meter?”  She lifted the scanner flap and peeked inside and said, “911 I think?”  Huh?!  It came out a few seconds later and I saw a 116, phew!  People behind me looked a little nervous and I don’t blame them.  One TSA agent said, “We need to do a pat down, do you mind?”  I said, “Of course you need to now, go ahead.”  What was I doing checking at the most inappropriate time?  I felt really off like I might be very low and ready to pass out and didn’t want to hesitate with checking because I had to run to the next gate so I felt I needed to just do it then.  I get sick to my stomach with flying so I take dramamine and that makes me kind of loopy…but I still love it.  Flying that is, not the dramamine.

2.  My favorite number is two.  I know that’s random but-My dad was diagnosed with bladder cancer.  It’s really scary because even though surgery removed the tumor, the likelihood of return is very high.  I’m making him vegetable juices and hoping that does something to help.  This has made me have a heart to heart with myself about my diabetes because I can do so much to make my outcome a good one-I really need to remember that and be grateful for it.

3.  My kids being 3.5 and still at home with me all day is driving me nuts.  I hate feeling nagged because I really am very happy to have them with me, to read books and play games all day, mold their minds into caring, open, patient people, watch them impressed as they have expert command of the computer, but at the same time, I know I’m not enough.  And I’m not sure how to solve this which leads me to:

4.  My husband Alex and I are having a hard time deciding where to live.  We can’t decide whether to rent or buy, to get a house or condo or loft.  And its because what we want doesn’t exist where we live.  We want to buy a really small place (so that the cost is low and the space is just for basic needs) and then we want to use our extra money to eat well (for health’s sake) and to travel (for our kid’s mind’s sake).  And I don’t mean travel abroad, I mean anywhere.  Right now just driving to a neighboring town to visit isn’t doable because rent is so high (since we want a nice and safe area-gee are we just asking for too much?).  When we walk out of our front door we want to be around people, a community.  I live in a place that is too large to be a town and too small to be a city and so we don’t have any of the best of either world.  Others would disagree but I must be ambitious because I want more.  Alex does, too.  We’re lonely.  There, I said it.  My kids are lonely.  School is coming for them and I’m sure they will love it.  Maybe that’s all we have to wait for.  In the meantime daycare/preschool is too expensive here and we make too much to get federal aid for it-nor do I want it.  Stubborn Sysy strikes again.

5.  I’ve noticed there is a back lash online towards people who are health coaches or something similar.  Usually, the most upset are those who studied for years to get an accreditation of some kind.  I can understand.  However, what someone like myself does as a health coach is in no way a threat to what a dietitian or a nurse or a diabetes educator does.  Think of what a coach does?  Supports, cheers, listens, encourages.  I’ll write more about this soon.  And I’d like for people out there to know that vocation has a lot to do with how good one will be at their job.  Just think, we all took math in high school but how many of us could teach others that math?  I couldn’t to save my life.  My health coaching training took one intense year but I’ve been reading and training on the subject my whole life as if I grew up knowing what I wanted to do only not knowing it actually existed until recently.  And I think that goes for many people of all types of professions and work.  I may write more about this later in detail but for now, I just want to say that health coaches don’t take the place of the other health care professions, they just want to help alongside of them.  And there is a need for them otherwise so many people wouldn’t be calling us for help and leaving happy and satisfied.  And we deserve to make a living off of it because we’re working hard, helping people (isn’t that the point?), and can’t do our work as homeless people.  We don’t have huge loans to pay back but that’s not our fault.  We do have to struggle more to find work since so many are still skeptical however.

6.  I’d like to remind you all of the website Guerilla Goodness.  It’s awesome and inspiring and really cheers me up this time of year.  Great ideas here for spreading around secret acts of kindness-which I agree with the author-do change everything.

7.  I’ve been thinking about how to reconcile my love of fashion and quality clothing while not spending much and while buying from small businesses and while keeping my closet simple.  A friend from France emailed me explaining what most girls there do:  They buy a few pieces a year that they carefully select while walking around town, making sure they fit perfectly and they get shoes that are comfortable but exactly what they are looking for.  Then, they wear the same few outfits over and over and over.  It keeps things minimal, lets them wear what they love, and keeps costs down.  And at the end of the year, they have completely worn out their shoes and clothes and can start anew the next year.  I read the same thing in a book recently, too.  Just thought I’d share because I think too many of us have too much clothes and we don’t even love most of it and then our closets are overwhelming, we’ve spent too much, and for what?

8.  There is a website I want to share.  My type 1 friend Cynthia Zuber is on a holistic health journey.  She is doing great and it’s been very inspiring to get to know her and see what all she does to regain her health and maximize it.  She shares the most delicious recipes I’ve seen and just want to let you all know to check out Diabetes Light.

9.  Did you get the flu shot this year?  I didn’t though I can understand why some do.  I haven’t in many years.  So far, so good.  Things have been great since getting my Vitamin D levels up with Vitamin D3 supplements.  Oh and frequent hand washing.  Just wanted to share.

10.  My most popular post is about nerve damage reversal.  I am submitting an update here that as of December 2012, I have less foot pain than I have ever had.  In fact, I have had none this year.  I don’t know why.  I wonder if running bothers me (I’ve been doing more yoga and walking and less running).  For years I had tons of foot pain, tons!  Then as I regained control of my blood sugars the pain increased (which doctors told me could be due to healing of nerves)  Then the pain went away for 99% of the time.  I credit this lack of pain now to well managed blood sugars.  I thought I would halt damage by improving my sugars but it seems I’ve reversed some because of the lack of pain?  Pretty fantastic what great blood sugars can do.  Makes the discipline and healthy lifestyle so worth it.  Even if I just do it most of the time Winking smile  Anyway, I share because the possibility of less pain is a big motivator.

Take care, all.

xoxo,

Sysy

Diabetes in the Morning

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I am in the middle of a fantastic dream.  I’m a few years younger (!!!) and so is my husband (!!!) and we aren’t married or with children yet (!!!)  We are at his parent’s house after a date night, just relaxing and talking.  Only his parents are different people entirely (!!!) and the only other difference is their house has an enormous library (!!!)  Alex and I are singing along to an Elton John tune (geez, I can’t even dream the dorkiness out of us) when suddenly, from some very tiny corner of my consciousness, a little voice screams “wake up, you’re low! LOW!”

My dream must have been one of those lucid ones because in the dream I suddenly tell Alex I need to go home.  Then my dream vanishes and I find myself shaky and in bed.  Aw man, I didn’t get to check out any of those books…  I start nudging Alex next to me, “Hey, I’m low…Alex…Alex…I’m low!”  He doesn’t wake up.  I now tap forcefully when I hear a grumble that definitely doesn’t belong to Alex.  I open my eyes.  Alex has gone to work and my daughter is in bed with me.  Her eyes are closed but she wags an authoritative pointer finger in the air and says (in third person, no less)  “No, no Henri!  Aurora sleeping…”  and then she drifts off completely again.  “I’m so sorry sweetie pie!” I whisper, and bring myself to get out of bed and search for my glucose tablets, which apparently, I’ve hidden from my kids as well as myself.

I finally find them and drop back into bed.  I wake up 10 minutes later to a little boy chewing on some glucose tablets on the edge of my bed.  “No, no Henri!”  says Aurora, wagging her finger at her brother.

We’re OK!

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How interesting is it that children with a type 1 diabetic parent think certain non-normal things are indeed, normal?

When I stop and think about it, as I sometimes do thanks to comments and questions from others, I think, “Wow, this explains so much about so many people”.

What’s normal to us can be totally not normal or acceptable and yet, if we’re used to it, it’s our normal.

For my kids, who are now almost 3.5, having a mother with type 1 diabetes is what’s normal.  And yet, they also know it’s not normal.  They know through experience of their own scraped and bruised knees, that when I prick my finger and bleed, or bruise my stomach with an injection, that it’s not normal because they know it hurts to bleed and bruise.

It’s fascinating to me.  They see me check my blood sugar and they give me a hug and an “aw mama, boo-boo?”  I say, “yes, but I’m ok.”  My daughter says, “Ok, mama” and my son gives me a thumbs up and a smile.

I think it’s a great teaching experience to let them see that sometimes I hurt but that I don’t let it get me down.  I find that even though they can be dramatic about a small injury, they still smile and say “I’m ok”.  And that’s what I do when I prick my finger or give a shot or clean up spilled milk.

My kids understand that my insulin and glucose tablets are “medicine”.  Some don’t want their kids to think of their insulin as medicine because it implies “sickness” but only one of my kids has taken an antibiotic before-and that was two years ago, so they don’t know what “medicine” really is anyway.

Right now my daughter has a cold and she looks on at her brother’s drawing on the easel as I check my blood sugar.  She says, “mama ok?”  I say, “yes, mama’s ok!”  (Even though my blood sugar is a little higher than I’d like).  She sneezes and grabs a tissue for her runny nose.  I say, “Are you ok?”  She sneezes, wipes her nose, grins, and twirls on one foot.  I assume that’s a “yes”.

Uh oh, now my son sneezed.

Have a Fabulous Friday with your kid/partner/friend/niece/nephew/dog/cat.

Interview with Type 1 Living Abroad, Ariana Mullins

 

Remember earlier this year when I interviewed Nathan ShackelfordHis blog is still one of my faves.  Well, he said I might like to check out his sister’s blog.  Ariana Mullins has type 1 diabetes like her brother, but doesn’t blog about it.  Instead she blogs about her family’s adventures living in Europe.  She is a fantastic writer (she just wrote my favorite blog post ever) and takes some amazing pictures.  Do check out her blog, it’s a beautiful reminder of what living a healthy, fabulous, and grateful life is all about.

I asked her some questions about how she manages her diabetes and what it was like having diabetes and living in Europe (and other places):

How long have you had type 1 diabetes?

I was diagnosed 21 years ago, at age 12.  By the way, I was diagnosed by my dad and his glucometer, and never even saw a doctor  about my diabetes until I was 14.  My dad and older bother are both type 1 diabetics, and we were living in a rural area in the Philippines. My dad helped me work out my insulin dosages, taught me to estimate carb counts, etc.  My brother sent me my first insulin wallet, (which I used for the next 15 years!)  I decided right away that I wanted to be healthier than any non-diabetic, and took everything related to self-care pretty seriously.  Six months after diagnosis, I left for boarding school, on another island– so I was really on my own!  When I did finally see an endocrinologist, he was amazed that I had an A1c of 5.6!

What’s your motto in life?

“Never make decisions based on fear.”  I think I have lived this philosophy pretty well with my diabetes.  I haven’t let my diagnosis keep me from doing anything I really wanted to do, with the exception of snorkeling and scuba diving.  I used to snorkel all the time as a kid, but once I became diabetic, the idea of being in the middle of the ocean with low blood sugar was just too hard to justify!  Other than that, I have not let my diagnosis keep me from living as fully as possible, trying as many new experiences as I can.

Ariana and her brother, Nathan:IMG_1246

What is your diet like and why do you eat that way?

I eat low carb, and follow more of a paleo-type of approach.  I love food, and love to cook.  We originally started eating a grain-free diet because of food allergies that my daughter and husband have, but I quickly realized that it was great for all of us, and simplified my life a lot, since I was already not eating much starch anyway.  We eat plenty of meat and eggs, lots of vegetables, coconut products, and plenty of fat.  If we’ve been to France recently, then there’s plenty of great cheese on the table, as well!
I don’t crave a lot of sweets, but I do make room in my day for dark chocolate (usually 80%) and am happy to try out grain-free dessert recipes for my family, although I don’t usually eatmuch of those treats.  We always eat very well, though, with an emphasis on great quality items.  Who wouldn’t be happy to have a nice steak with herbed butter, grilled asparagus, olives, and a fresh, herbal salad for dinner?  Add a glass of red wine and some chocolate for dessert, and I feel like one lucky lady!  I never feel deprived, and absolutely love eating all of the great food at our table.

I think that one of the most positive, proactive things a person (regardless of health concerns) can do is to look at their food supply– what are we really eating, and where did it come from?  How was it produced?  Taking an interest in our sustenance is extremely rewarding, and eating well does not have to be expensive or difficult.  It’s true that eating quality food is a real priority for me, both in terms of budget and effort, but I don’t spend more than the average person (in fact, probably less!) and we feel incredibly wealthy when we sit down to eat together.

(Sysy speaking-she isn’t kidding.  Below is her cooking.  It’s what I want for dinner.)

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What in your opinion, is the toughest thing about living with type 1 diabetes?

I think the hardest part is just that it’s always there, on my mind, and impacting the smallest decisions in my day.  What I eat, when I eat.  The type of exercise I do, when, how long, etc.  Although diabetes doesn’t limit me much, it impacts everything.  When I leave the house, I have to think about whether I have something on hand in case of hypoglycemia, and whether it’s enough, or where I could get more, if needed.   And I am always counting…  The insulin I took, what I ate, when, what I will eat, what my last number was, what happened yesterday or the day before, trying to anticipate what my blood sugar might do.  There are so many variables– how much sleep I got, the amount of stress I am under, how old my insulin is, which ratio of insulin in my system is basal, how long a bolus dose will be working… The list of factors is endless, and it can be overwhelming at times, when there is a problematic dynamic happening that I need to figure out.  I can do everything “right” and still not get the numbers I am shooting for.  Diabetes takes a ton of mental energy and patience, and when other things in my life are a little wild, it can feel like too much!

Do you ever fear your daughter will develop it?

Yes, I do fear that she might.  Genetically, the chances are not too bad, but there is always that possibility.  Honestly, this is another reason that we eat the way we do– I want to give her the best health foundation that I can.  I do my best without being obsessive, and the rest is really not up to me.  It’s not something I think about every day, though, and it really wouldn’t be the end of the world if she did develop diabetes.

With her adorable daughter, Amelia:IMG_5617

Is it challenging living abroad with type 1 diabetes? What places have been the most challenging/least challenging?

I don’t find living abroad with this diagnosis to be much more challenging than living in the US.  In Germany, I did have to do more work to find a doctor that spoke English.  My diabetes is the same here as it would be anywhere else in the world.  I think it would be more challenging living in a really hot country, where I had to think all of the time about keeping my insulin cold.  Or a place that I couldn’t find supplies so easily.  But so far, it’s not hard at all.  We travel quite a bit, and that of course presents some challenges, but usually nothing too serious.  And of course,  the travel is so worth it!

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If you can’t find glucose tablets, what do you use for lows?

Fruit– I often carry an apple in my purse.  I can’t find Smarties candy here, which is my #1 choice.  Fruit leathers are pretty good, though, and if I am out and about, then getting a little bit of fruit juice is fast and effective.

How many times a day do you check your blood sugars?

This actually varies.  Since I have some limitations of test strip supply, I use a “save and splurge” sort of strategy.  I might use tons of strips for a few days, while I am figuring out a dynamic or blood sugar problem.  Once I have logged all of that information and have something to work with, I will make changes, and then check less obsessively, to see how things are going.  On average, though, I’d say I check 5-7 times per day.

Why did you decide to move abroad? Were you worried about how you would manage with your diabetes?

We decided to move overseas because we wanted to live in Europe.  It’s really that simple!  When we found out that my husband could get a good job working for the US government overseas, we jumped at the opportunity.  We lived in Germany for a while, and now we have been in England for over a year.
To be honest, my diabetes was not even a factor I considered when making the decision to move.  I think this makes sense, if you take into account my first years as a diabetic– completely self-managing in a foreign country.  I had not gotten exceptional care from doctors in the US, and the cost of insurance, co-pays and things like that never made me feel like I was particularly lucky to be a diabetic in my home country.  Once, I went to see a really great endo in Portland, and they booked my appointment and said they would accept my insurance.  But it turned out that they wouldn’t– I found this out after the doctor had run a whole bunch of labs (which just revealed that I was super healthy!) and we ran up a bill of $1,000 for that one visit, during a time of financial strain!  I could not even afford a follow up, which would have been the more valuable visit.  See what I mean?  There are great resources for diabetics, but not necessarily available to the people who need them.

So, here in England, the way they manage diabetes is not that great, either.  But they do cover prescriptions and supplies 100%!  Honestly, it is the patient that manages their diabetes, not the doctor.  So I would rather be empowered by having the supplies and medications I need, than lots of face time with doctors and nurses.  That said, there is a diabetes clinic nearby, and I can call one of the nurses, send them my logs, etc., whenever I want, for help.  The technology is a bit behind, though.  Not many diabetics use pumps here, since the funding is limited, and CGM supplies are not covered.  I am currently on a waiting list for a pump class, and then subsequently getting set up with a pump.  I don’t know how long it will be, and it’s not something I am expecting next week, I’m just waiting to see how it plays out.  Interestingly, you have to sort of prove your worthiness to get a pump– a reasonable A1c, and adeptness at carb counting and adjusting insulin.  I know these are kind of basic in the US, but I think it’s more rare to find PWDs who are very engaged in their own management.  This observation is simply based on the way things are handled– I haven’t met another PWD here yet!

What advice do you have for someone with type 1 who is considering moving to England (where you live now)?

I would recommend that they work to get their diabetes well-managed, through whatever resources they have available to them at home first.  It may vary depending on where in England they land, but I don’t think the management resources here are great.  They would need to be pretty competent with trouble-shooting and investigating issues on their own.  Sure, there are doctors and nurses here to help, but it could take a while to get an appointment at a diabetes clinic, or to find the exact type of help they need.  For example, if I had been working with a great endo before I moved here, I would have tried to set up a way to stay in contact with them, and pay for consults over the phone or via email.  On the other hand, if they qualify for NHS coverage, then they are going to love getting all their supplies for free!

The thing that most positively impacts your diabetes management?

A curiosity about the human body, and health in general.  Being diagnosed at a young age definitely sparked my life-long interest in health and nutrition.  Our bodies are really amazing.  They are always working hard to do their best, and deserve our best in return– the best nutrition we can find, plenty of rest, play, etc.  It makes me sad when I see people feeling angry with their bodies, or fighting them– the body is always working really hard, and never tries to sabotage us! The discomforts or troubling symptoms I may have are just forms of communication.  If I pay attention and respond, I can take great care of myself!  Don’t let the challenges of living with diabetes overshadow all of the really wonderful things that we are capable of through such exquisitely designed structures!

Where in the world would Carmen Sandiego be if she had type 1 diabetes?

Probably in Germany!  The best diabetes technology always seems to be coming from there, and they also have a great healthcare system that allows diabetics to get the care that they need, with minimal personal expense.

Any last words?

I don’t usually write about diabetes, so this was a positive exercise for me, in terms of articulating my experience with this condition.  Diabetes is actually not a big part of my identity.  I learned from an early age that I didn’t like being thought of as “that diabetic girl.”  People either felt sorry for me, or felt like they needed to get involved, or (worse yet!) tell me their best diabetes-related horror story.  No thanks!  Life is so interesting, and there is so much out there to experience, so I do my best to strike the balance between taking good care of myself, and just living and enjoying everything else around me.

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With her husband, Jeff.

Thank you for letting me share a bit about my experiences, Sysy!

Anytime!  Thanks for being so candid and helping prove that people with diabetes can do anything.

“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.

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.

Diabetes isn’t a Drama Queen

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The other night, I realized my kids had ate my glucose tablets so I reached under my bed for the emergency bag of gummy candies I have stashed there.  I frantically tore the bag open and started stuffing my mouth in frustration.  Alex studied me for a moment and said, “Are you ok?”

Through a mouthful of sticky, fruit shaped, red 40 dyed High Fructose Corn Syrup poison I muttered, “I hate these lows, the ones that shoot down quickly.”  Then as beads of sweat came down my forehead and my heart raced I said, “It literally feels like death is coming to get me.”

Alex looked at me sympathetically and said frankly, “Well, that’s pretty much what’s happening, isn’t it?”

I’m usually a tad dramatic but this time and many other times, diabetes rises to the occasion.

Diabetes isn’t a drama queen.  And we’re not drama queens or kings for living with it.

This stuff is for real.

Three

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My kid’s turned three the other day.  We spent the day watching 9 little kids play together in celebration.  They all dealt with obstacles as those obstacles presented themselves (how do I reach that blackberry on the blackberry tree?)  They helped each other.  They weren’t afraid to tell the truth.  Or to cry.  Or laugh.  And when they fell down they just jumped back up and continued on their way.

If we manage our diabetes in the same spirit with which a child lives, I think we can do pretty well.

June 2012 377

The kids planted a tree with dad for their birthday.

A word on my children in case they read this one day.  Aurora is a sensitive and cheerful child.  She likes to act.  In fact, the world is her stage, almost all the time.  She can play alone for hours.  She loves to dance and sing and is very enthusiastic and kind towards others.  She is a bit of a drama queen like me, which entertains me to no end.  She loves being outdoors and discovered that she loves being barefoot outside.  So much so that I now struggle to get her to wear shoes.  Oh, and she’s very stubborn.  But I’m kind of glad about that.  Her favorite food is anything starchy or sweet (ugh).

Henri is really extroverted and friendly.  He is excitable and high energy.  When he stops moving he falls asleep.  He loves to inspect everything new that presents itself, whether that be a bug, a piece of technology, a toy, or a blade of grass.  He can be a handful but I have discovered that if he’s had his fill of social endeavor, he’s calm and happy.  If not, well, look out, that’s all I gotta say.  With all his moving about he is a surprisingly good cuddle bug and is very affectionate and loving.  He is also very decisive and bossy.  He’ll only eat chicken if there are bones attached.

The Girl’s Guide to Diabetes also turns Three!

I had began blogging with one goal in mind: to tell others that going from lowest of low to happy and healthy was possible because that’s my story.  But this blogging thing has turned into a vehicle for being a diabetes advocate and for discovering opportunities for talking to more people about our diabetes than I ever imagined.  My favorite thing is teamwork and camaraderie and working on making a real difference.  Blogging has opened up a world where these things are all possible-much more so than if I had just done what I set out to do initially.

So here’s to going with the flow and letting hard work and one’s heart lead the way.  Fulfillment doesn’t escape us that way.  I foresee blogging forever so watch out!

XOXO

ps:  If you want to guest post, I don’t care who you are, you’re welcome to (provided you’re real).  Contact me at sysy@thegirlsguidetodiabetes.com

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