Milestones, Baby Shopping, & The "Small" Stuff

This weekend marked several milestones for me.  First, as of July 23rd, we've been married for a year and a half, which also means that my first Diaversary is only a month away.  Then, on the 24th, I celebrated my 23rd birthday and the 12 week mark of my pregnancy.  According to the ParentsConnect Pregnancy Calendar, where you can view your little peanut in a 3D rotatable view,

Junior has doubled in size over the past two weeks and now weighs almost ½ ounce. He's also now around 2 ½ inches long, about the length of your pinky finger or a Vienna sausage, which, in a few months, will be indistinguishable from one another.

Interesting, right?  I think so, at least.  I start every day with an email that tells me what is going on that very day in my pregnancy, which I find fascinating.

I did some shopping for baby clothes this weekend with my mom at an outlet mall, which included The Children's Place, Gymboree, and Carter's stores.  I found a lot of adorable stuff, which I was eager to show off to my husband when we got home.  He was less impressed with the two outfits with dogs on them (because he usually despises anything pet-related anyway), but he loved the Carter's Microfleece Sleep & Play with a moose on it, as well as a onesie from Gymboree that says "My Daddy Drives a Big Truck" on the front.  We both also liked the Carter's Sherpa Pram with teddy bears on the footies and ears on the hood...who could resist a little baby bundled up in something so soft & cute?!

Yesterday I also got my scores from the Petunia Pickle Bottom Semi-Annual Online Outlet Sale in the mail, and I couldn't be happier.  From their Organic Layette collection, I got a Social Set and a Snuggle Set in gender-neutral-ish prints (which, of course, means picking the boy version, as my husband would kill me if I tried to dress our potential son in girly colors!).  I also got a set of their Swaddling Blankets (also made from organic cotton), and a Stroller Blanket that should match our red Britax B-Ready Stroller & Chaperone Car Seat, which we bought several months ago (pre-pregnancy) because we got them for about $350 cheaper than retail online.  We actually started buying baby gear last Christmas, because (a) we knew we'd need it anyway & (b) because it's all so expensive, we figured we might as well spread it out to make it easier on our wallet.  I'm all about bargain shopping (hence the outlet malls & sales), so my skills have been put to good use while buying baby stuff!

All of this shopping has helped me get more excited about everything as well.  As many of you know, I've struggled with not being able to truly enjoy my pregnancy due to all of the issues my family has been having lately.  I finally decided one day that although the problems were still going to be there, I could change how I let them affect me.  I realized that by not being happy, I was not only giving my sister exactly what she wants, but also making the devil very happy that I wasn't enjoying one of God's greatest blessings for us.  The next morning, I woke up feeling rested for the first time in a long while, and it felt as if a weight had been lifted off my shoulders.  The issues with my sister continue every day, but now I choose to not let it all interfere with the feelings I have toward my pregnancy and our baby.  She's taken so much from me, but I refuse to allow her to take away my happiness.  After all, we'll only have this time with this child once, so we need to make the most out of it.

One thing that still bothers me, though, is when people (usually the same ones who encourage me not to let my sister's situation influence my feelings about our pregnancy) find out that my sister is having a girl, and make the comment that "Maybe [we'll] have a boy so that [my parents] will have one of each/so there will be less competition between us."  If it really doesn't matter that my sister is pregnant too, it follows that the gender of her child should not have any effect whatsoever on what we "should" or "shouldn't" have.  Furthermore, although I would be extremely happy with either a boy or a girl as long as they're healthy, I've always secretly wanted a girl.  I cried the day I found out what my sister was having because it felt like one more thing she had taken from me-especially because she's such a tomboy herself, and I've always been the girly girl.  I know she had no control over her baby's gender, but I still couldn't help but feel like it was another blow from the universe.  I tend to get bitter whenever people bring up the gender issue simply because everyone knows my sister is pregnant too, and the comparison is inevitable.  I end up just shutting down because I never want to hear the remarks that come with it, and I don't know how to respond when people push their opinions on me when I feel just the opposite.

I was listening to Carrie Underwood's sophomore album Carnival Ride the other day, and the lyrics to her song "So Small" really hit home:

It's so easy to get lost inside
a problem that seems so big at the time
it's like a river that's so wide
it swallows you whole
While you sit around thinking about what you can't change
and worrying about all the wrong things
time's flying by
moving so fast
you better make it count 'cause you can't get it back

[Chorus]
Sometimes that mountain you've been climbing is just a grain of sand
What you've been up there searching for
forever is in your hands
When you figure out love is all that matters after all
It sure makes everything else
Seem so small

It was a good reminder of focusing on the important things in life, and realizing that sometimes the things that are bothering you really aren't that big in the grander scheme of things.  Every day is still a struggle, especially when I have to be around my sister, but I'm slowly making progress.  Everything that she does frustrates me to no end, but I've given up holding onto all of everyone else's problems because (a) I can't do anything to fix most of them & (b) it isn't fair for me to shoulder that burden when I have my own health and pregnancy to worry about.  We're supposed to have a "family meeting" to discuss it all, but it hasn't happened yet.  I don't know if it will do any good, because everything hinges on my dad withdrawing financial support, and I honestly don't see that happening anytime soon. 

The thing that bothers me most about it all is that a good portion of the things my parents have been paying for are far from being necessities.  She made the choice (against my parent's wishes/instructions) to apply for Medicaid as a secondary insurance to cover her hospital bills (my parents' policy is still her primary insurance), so I believe that if she is going to have the attitude that she can't pay those things on her own, she shouldn't have cable either.  Today, my mom and I saw the Dish Network people at her house installing the satellite.  She claims that she has it paid through the end of the month as a carry-over from her previous apartment, but the month is almost up, and she doesn't have a job!  It angers me to know that whenever it comes time to pay the bill, she'll be asking my parents for money again-money that they don't necessarily have, and obviously satellite tv is NOT a necessity!

I know that life isn't fair, but I fail to understand how there can be so many blatant injustices that happen even in our own families.  I hope that in raising our children, we can make an effort to treat them all equally, because I've experienced and witnessed what the alternative does to families.  I may have no control over the fact that I have diabetes, or that countless people have enabled my sister in ways I can't even begin to fathom, but I can do everything in my power make sure that my children have the best, healthiest life possible...And that's exactly what I plan to do.

Pregnancy Ups & Downs

A few weeks ago, I shared the big news that we're going to have a baby(!).  Since then, it's been a whirlwind of pregnancy symptoms and the feelings that come along with the realization that our life is soon going to change in a major way.  I've wanted a baby for so long and for so bad that it hurt, so I've been trying to see the not-so-fun symptoms as a means to a wonderful end.  That first week when my blood sugars were so out of control, I told my husband that I'd gladly deal with anything as long as my blood sugars and health stayed in line, and so far, so good.

I've still had some wacky numbers and more highs than I'd like, but overall my level of control has been very good, with my average still in the 95-105 range.  I've given up feeling like I have a handle on this disease, though, because just when I think I have things down, it throws me for a loop again.  Instead, I've just been trying to keep a close eye on my numbers and changing my insulin rates accordingly...basically, what I've done all along, just on a much more frequent basis than usual!

Physically, I've felt pretty good aside from extreme exhaustion.  I have a very hard time keeping my eyes open most afternoons by at least 4:00, then I crash on the couch for a while when I get home.  Evenings are pretty much nonexistent for me, because I'm either halfway asleep on the couch or going to bed early.  I've had some nausea, but haven't actually been sick, so I guess that gives you mamas that had horrible morning sickness license to hate me-some of my friends do! =)

Emotionally, it's been up and down for me lately.  I am very truly thrilled that we're finally getting to experience the blessing of a baby for ourselves, but my sister's situation has made everything bittersweet.  I deleted my previous post about all of that, but in short, she got pregnant right before my appointment in May to see what my A1C was.  Due to our past history and her own problems, a lot of us believe that she got pregnant on purpose.  It was definitely a stab in the back for me, because I wanted a baby so badly but had been waiting to get my blood sugars as tightly controlled as possible before conception.  I'd been putting in a lot of the hard work, so May was the potential light at the end of the tunnel for me...then that happened.  Ours was supposed to be the first grandbaby in the family on my side, so I feel like she took something from me that was rightfully mine.

To add insult to injury, it's like she refuses to let me be happy.  People tell me all the time to not let her bother me and to just try and enjoy my pregnancy and prepare for our baby, but she's making that extremely hard to do.  Whenever anyone brings up my pregnancy or asks how I'm doing, she has to butt in and mention something about her being pregnant.  Example: I was talking to my high school friend's mom one day, and she was asking how I was feeling.  I was just telling her that I hadn't had any morning sickness yet when my sister walked up and proceeded to go on about how SHE'D been sick for the whole first FOUR MONTHS of HER pregnancy(!!!)  At that point, I just stopped talking and walked away, because what can you do?  She literally can't stand it when someone asks about my pregnancy without knowing that SHE'S PREGNANT TOO(!!!)

I honestly don't know how to deal with this situation, because the simple fact is that although I know I shouldn't let her bother me, she does.  She gets to me so bad that it's interfering with my ability to be happy about our blessings, which is really and truly sad.  I shouldn't have to feel like I can't bring up my pregnancy with anyone-I should be able to enjoy it just as much as (or more than) her, because our pregnancy is a blessing in every way.  Unlike her, I have a husband who loves and supports me and our baby, I waited until my diabetes was under control before conception, and we're completely independent financially-so we don't have to rely on my parents to buy everything for us.  That should all make me happy, but in reality, the latter fact makes me resent her even more...because while this should be our time of joy, my parents are totally consumed with buying her baby stuff & haven't been giving us the attention we deserve as a result.

Since I have a minor in Psychology, you would think I'd have figured a way around all of this by now...but I haven't.  I'm at a complete loss as to what to do to be completely happy despite her obvious desire to ensure otherwise.  It's created a rift between my parents and I (with whom I was extremely close before), and is a source of stress for literally everyone in our family (and some of the extended family).  All the while, she is incredibly self-absorbed and feels entitled to everything she receives, plus more.  She doesn't understand the impact her situation has had on everyone, nor does she care that her lack of a job (or plan/motivation to find one) has put a lot of unneeded financial strain on my parents, who recently bought a house in town to rent to her.  As the oldest sibling, I feel like it's my responsibility to fix the situation even though I know it's probably not possible for me to do so.  I worry about the impact it will have on my little brother, who will be taking some college classes as a junior in high school this year and will be graduating and going to college before long.  It seems like my parents are punishing him for my sister's mistakes by being stricter on him...which they also were on me.  There has been a long history of her getting away with anything she does, while my brother and I were always held to a different (higher) standard, both behaviorally and responsibility-wise.  It definitely isn't fair, but it's also hard for me to be in the position of trying to point this out to my parents without driving the wedge further between us.

I recently ordered a few books on the subject of family rifts, so hopefully they will give me some much-needed perspective on the situation.  If that doesn't work, I've been considering trying to find some counseling either through our church or with a licensed therapist, because I know it isn't fair to go on feeling like this when I should be getting excited about and preparing for our little one.

A Baby is On the Way(!!!)

Well, I've been on pins and needles waiting for my doctor's appointment to come around so that I could share the exciting news with everyone...we're going to have a baby!  We've known for almost three weeks now, but didn't want to tell anyone (other than my parents, whom I work with and I knew would figure out something was up) until I'd seen the doctor.  I went on Wednesday to meet with the OB's nurse, and happened to luck out and got to have my dating ultrasound on the same day due to an appointment cancellation.  I'm officially six weeks and five days, and everything looks good so far...I even got to hear the heartbeat, which was surprising because the ultrasound tech said we probably wouldn't be able to see much.  I saw the little spot right away and knew it was our little one, then heard the quick "thump, thump, thump" and figured it must be my heartbeat =) I only got to listen for a few seconds, but it was wonderful knowing that our tiny little baby was okay in there!

I first suspected I might be pregnant what was probably just days after conception.  May 17-19th, I had some seriously wacky CGM #s-if I didn't have double arrows going up, they were pointing down-nothing in between.  I even emailed my CDE and asked her if this might mean I could be pregnant, but I also didn't know if it was just due to my natural hormones-this was the first month I'd been off the pill, and I didn't know how my own hormones affected my blood sugar levels.  I had several other random symptoms (increased heart rate as I laid on the couch or in bed in the evenings, itchy skin, and a stuffy nose, just to name a few), but still was hesitant to jump to the conclusion that I really, truly might be pregnant.  The next couple of weeks passed, and I took a pregnancy test three or four days before I expected my period, and it was negative.  I was a little bummed out, but took another one on the day my period was supposed to start, and lo and behold, there were two precious little lines on the stick!  I was so shocked I just sat there and cried (joyful tears) for a little bit, then went and showed my hubby.  I think we were both surprised it happened so quickly, because I hadn't even had the prescribed normal cycle after stopping the pill, and I figured that since I'd been on the pill for so long (about four consecutive years), that it would take us a while to conceive.  When I emailed my CDE, she called to chat about my BG goals during pregnancy.  We talked about how crazy it was that I was right the couple of weeks before when my #s were out of whack, and when I told her how quickly it had happened, she said, "Well you're just Fertile Myrtle then!"

I took another few pregnancy tests in the weeks that followed just to make sure, because it all seemed too easy...and nothing in my life over the past year has been easy.  I've come to the conclusion that God must have known how much we needed this reprieve from all of the challenges and heartbreak I've experienced over the past several months...this pregnancy for me is not only an amazing accomplishment in spite of my diabetes, but a much-needed beacon of light in our lives.  I know that the road ahead of me will be a long one, but I'm 110% committed and ready because I know it means a healthy baby in the end. 

My blood sugar levels the first weeks that I knew I was pregnant were tough to control, so my CDE suggested changing my basal rates and re-evaluating my basal/bolus ratio.  After some adjusting, my numbers have returned to near-normal, although they're still more difficult than usual to control.  I also know what I'm up against as far as public opinions towards diabetes and pregnancy, but I'm prepared to deal with that...the people I care about (and who care about me) know more about the realities of the disease than the general public, so the un-diabetes-educated majority doesn't bother me as much.  My ultrasound tech on Wednesday was an older lady who wasn't the friendliest, and she questioned the validity of having a sonogram so early on.  After double-checking with the nurse, she came back and said she "didn't realize [I] was diabetic, so it puts [me] in a higher risk category", and therefore the sonogram was necessary to make sure everything was developing as it should.  Thank you lady, because it's not like I've been preparing for this for months and reading everything I can about it or anything...but oh well.  Like I said, I got to see my baby and hear its little heartbeat, so it didn't bother me as much as usual.  There are just times I'd rather not be a "diabetic pregnant woman" in everyone's eyes, and instead just be a normal pregnant woman instead.  Yes, there are (many) extra considerations I have to make because I have diabetes, but I also want to be able to enjoy my pregnancy like everyone else without the ignorant comments!

60th Diabetes Blog Post (Yay!)--A1Cs and Running

Apparently this is my 60th blog post since I first started chronicling my journey with diabetes in November last year!  My first D-aversary is a couple of short months away, and I honestly can't believe it's already almost here.  I never in a million years thought diabetes would be such an intimate part of my life, but I've survived the past months and learned a lot--about diabetes and life--in the process.

I (finally) had my appointment with the endocrinologist on May 16th, then got my lab results back a couple of days later...and my A1C was 5.7%!!!(!!!!!)  So, we officially got the green light to start our family, something I've been waiting months for.  My previous A1C was 6.5%, so it would have probably been fine if we had started our family then, but probably just doesn't cut it for me when it comes to my future children's health...I'd never be able to forgive myself if I didn't bring it down and there ended up being something wrong with our baby.  I know that anyone can have a child with birth defects, but I strongly feel that if you have a chronic disease like diabetes, it's your responsibility to get it under control before you even think about having a child.  I think it's just one of the first of many decisions you have to make with your child's best interest in mind, and perhaps one of the most important.  All of the current scientific literature and knowledge (and my CDE) says that you should get it under 6.0% preconception, so the perfectionist in me finally had something to shoot for over the past several months.

Other than that, I don't think I've mentioned that I consigned my Gazelle to the spare bedroom until the weather becomes unbearably hot/cold again in favor of running outside.  I began with alternating walking and running, then gradually (very gradually) progressed to running.  I highly recommend the Runner's World Complete Book of Women's Running: The Best Advice to Get Started, Stay Motivated, Lose Weight, Run Injury-Free, Be Safe, and Train for Any Distance if you're interested in starting a running program.  It has great advice on a wide variety of running-related topics, ranging from beginner to marathon runner-and it's equally friendly to both.

Running has become a lot of different things for me.  First and foremost, I run to stay in the best shape possible--for me, my husband, and our future children--in spite of my diabetes.  I also run, though, because it keeps my life a little less stressful.  On those long runs when it's just me and the road ahead (and behind!), I have a lot of time to think and sort through the things I push to the back of my mind during the day.  I've worked through a lot of issues this way, and running has saved me on the days I want to break down and cry--it's become my go-to stress reliever.  Not only that, it also gives me a sense of accomplishment.  You see, I was never what you would call an athlete during school.  I ran cross country and played basketball and tennis, but so did everyone else because I grew up (and still live in) a very small town.  In other words, athletic ability was not a prerequisite for participating in sports.  I could place in the middle of the pack in cross country, but that was the limit of my athletic prowess.  My junior high and high school coaches would probably faint if they knew how much I run now!  I've worked up to 4 miles at a time on my long runs, and my fastest time to complete that distance is right around 40 minutes.  Not Olympic-worthy, for sure, but not to shabby for someone who spent her junior high days looking for excuses to get out of workouts!

Life Stages With Diabetes-DSMA Blog Carnival Post

Here is the topic for this month's DSMA Blog Carnival:

This month we are going to revisit the DSMA chat from March 16th – Life Stages with Diabetes.

Living with diabetes can be tough and we never get a break.  It’s quite easy to feel burnt out from everything we have to do to stay healthy.  When that happens, it can help to focus on the things, and the people, who make all our hard work worth it.  So this month, tell us:

How did relationships with other people help inspire you to take care of yourself?

First, some background.  When I was diagnosed in August 2010, one of the first worries and questions I had for my endocrinologist was about the possibility of having children in the near-ish future. He reassured me that I'd be "fine", and not to worry about it.  Of course, anyone who knows me is well aware that I can't just stand idly by waiting on things to happen, so I had to do something about it.  As soon as I was diagnosed, I ordered a bunch of books on diabetes; however, I had a harder time finding (accurate) information about diabetes as it relates to pregnancy.  Cheryl Akron's book "Balancing Pregnancy with Pre-Existing Diabetes: Healthy Mom, Healthy Baby" was a Godsend.  As one of two books I bought on the subject (the other being the ADA's out of print "101 Tips for a Healthy Pregnancy with Diabetes"), Cheryl's book was current (published in 2010) and thorough, covering everything from preconception to birth and beyond.  I felt much better about my ability to have a healthy pregnancy and baby after reading her book, and was then able to get on the ball and work toward becoming the healthiest I can be before we decide to start our family.  My CDE recommended I shoot for an A1C of 6.0% or less preconception, so I made the decision to start insulin and get on the pump (my endo would have been content to leave me on Janumet until our next appt, but I knew my control wasn't good enough with it and I had to try to stay ahead of the curve since I was coming out of my honeymoon period).  I've been using the Medtronic Minimed Paradigm Real-Time Revel 523 since January, and started the CGM last month.  Since then, my average has come down significantly, and I'm hoping (*fingers crossed*) that I'll hit my target when I go for my next A1C on May 16th.

Now, back to the subject at hand...My relationship with our future children has inspired me to take the best care of myself possible.  Don't get me wrong-my husband is wonderful and I don't know what I'd do without him, but my health doesn't have the same immediate, tangible impact on him that it will on our children.  If there is anything I can do to ensure they have a long, healthy life beginning at conception, I'm all in.  Since scientists now believe that our children's future health starts in the womb, I made the commitment months ago to do everything I can to have the healthiest pregnancy/baby/me possible.

It definitely hasn't been easy, though.  It's been an emotional roller coaster waiting around to start our family while I get my health in order because all of our friends already have one or two kids by now, and we're around them almost every weekend.  I love our friends dearly and adore their babies, but that's not to say it isn't difficult when I find myself twiddling my thumbs while everyone around me is holding/feeding/playing with their little ones.  A lot of times, it just downright sucks.  The holidays make it even harder because although my husband and I are included in the festivities, it's hard to be around everyone's little families while it's still just the two of us.  It's like we're always on the outside of a club we haven't earned membership to just yet.  Watching the babies "exchange" gifts and open their presents at our Christmas gathering was absolutely heartbreaking because all I could do was sit there with a smile plastered on my face when all I really wanted to do was go home and cry.  And that was after I was asked to take everyone's family pictures, only to have them forget about my husband and I...I ended up having to ask them to take our picture.

For that reason and others that I'll leave unmentioned (immediate family drama), it's been hard to get excited about starting our family recently.  It seems like every time I allow myself to get excited about it, I end up heartbroken again for one reason or another...It's no surprise, then, that it's easier to not feel at all rather than to feel the pain.  I'm super good at self-analyzing (I do have a minor in Psychology), but not so great at following my own advice.  I try to get past all of the mental hurdles and focus on the positives and our future, but it's hard to do when it seems like so many things aren't going your way.  I'm generally a very positive, optimistic person, but I'm human...I'm human and I have lots of feelings, both positive and negative. 

I didn't intend for this to be such a downer of a post, but sometimes that's what happens when you really open up.  In all of my blog posts, I strive to be honest about my feelings and thoughts, and they're not always peachy-keen...but then again, such is life, and especially life with diabetes.  It's full of ups and downs (and sometimes you end up sideways without knowing how you got there), but the thing that remains constant is that it's always changing.  In my 22 years of life thus far, the biggest thing I've learned is that all you can do is do the best with what you're given.  When life hands you diabetes, sometimes you just have to put your big girl panties on and deal with it, even on the days you don't want to...and those days are always the hardest.  I'll echo what I said in my first DSMA blog carnival post on exercise: just do it.  Even when you don't want to, no excuses.  If for nothing else, do it because the decisions we make every day (even/especially the "little" ones) shape our future.  On the days when my emotions are getting the best of me, I go for a run. By the time I get back, I always feel better about life.  That's the thing about having diabetes...you just have to take things as they come, deal with them the best you can, and hope you're doing enough to secure a healthy, happy, long future.  And you know what?  Even on the sucky "poor me" days, the future still looks pretty stinkin' good, because I can't wait until we have a cute, drooly little one of our own, and that keeps me going. =)

This post is my April entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/april-dsma-blog-carnival/

Diabetes Terminology: It's Time for a Change [Awareness Series #1]

Words have the power to build people up or tear people down.  Unfortunately, a lot of people don't know how hurtful and harmful their words can be to others, especially when it comes to diseases or disabilities.  These are often sensitive subjects for people affected by them, and cause a lot of personal turmoil on their own.  This anxiety is compounded when others (either intentionally or not) use terminology that is at best politically incorrect and extremely hurtful at worst.

Before I was diagnosed with diabetes, I did not think twice when I referred to someone as "diabetic."  Even when my sister was diagnosed with type 1 diabetes at age 16, I didn't realize how some people are affected by the term.  My sister often complained about our family bringing up her diabetes to everyone, because it was something that she wanted to keep private at that age.  By describing her as "diabetic," we were defining her first and foremost by her disease.  I truly didn't understand how much that could hurt until I personally was diagnosed with type 1 diabetes in August. 

I've written several times about how being referred to as "a diabetic" (with a capital 'D') irritates me.  Some people, especially those who have been dealing with the disease for many years, aren't bothered by this term.  However, a lot of people (myself and my sister included) would rather be referred to as PWD.  In the DOC (diabetes online community), this abbreviation is used to refer to "a person/people with diabetes."  This may seem like an argument of semantics, but it's really an important distinction for those of us that are affected by the term.  The reason being that this distinguishes us as people first...people who happen to have diabetes. 

I would almost guarantee that anyone who has any form of disease or disability does not want it to define their lives or who they are.  Yes, many times these things do tend to take over a large percentage of our time and attention, but we still don't like to be defined by them.  These terms put our diseases or disabilities (which, by the way, no one asks for) at the forefront, while most would prefer they be left as part of the background of our lives.  I am very open and forthcoming about my diabetes with those who are genuinely interested in learning more about the disease, but I get frustrated with people who assume they know everything about my life just because they know someone who is "a diabetic". 

For example, I was at a fundraiser meal with my husband one Sunday a few weeks ago and was wearing my insulin pump on a belt over my skirt suit.  When we got to the end of the line, a lady I used to go to church with asked me, "What is that on your belt?" I told her it was my insulin pump, and she replied, "Oh, I didn't know you were A DIABETIC."  I let that one slide, and told her that I was diagnosed as type 1 six months before.  She said, "Oh, I didn't know that.  I guess you can't have dessert then, huh?!"  I informed her that since I was on insulin, I had more flexibility with my diet and could simply cover the occasional dessert with insulin.  I'm almost positive, though, that she was thinking I didn't know what I was talking about, and that I should only be eating sugar-free desserts.  When I told my sister about our conversation, she said that lady had given her a lot of grief in the past as well over what she ate. (Also see: "the D-Police" in this post)

Then, just the other day, my mom and I were talking to another lady who seemed to believe she knew it all about diabetes because her neighbor and preacher (and her grandmother and son, who had both passed away) were "bad diabetics."  She told me she would bring me some sugar-free (but not carb free, of course) cookies next time she made some.  Obviously, she meant well; however, it is difficult to explain to people like this who have long-standing beliefs about the disease that what they think they know is oftentimes incorrect.  Clearly, the only way to fix this problem is to raise awareness and educate people at every opportunity.

"Bad Diabetics"
What's almost as bad (and just as frustrating) as people referring to me as "A Diabetic" is to hear people talk about others they know who are "[a] bad diabetic[s]" when diabetes comes up in the conversation.  This bothers me for two reasons: first, what in the world is a "bad diabetic"? (and would that person enjoy being called that to their face?).  Is it someone who truly doesn't take care of themselves, or just that diabetes is something they have to give a lot of attention to?  In the first case, you would be better off giving them some much-needed encouragement and support to take care of themselves better rather than discussing their bad health with others.  In the latter case, of course diabetes takes a lot of time and attention to control.  I suppose in that case I have it really "bad", because managing it often feels like another full-time job.  Furthermore, in some people's eyes, the fact that I use an insulin pump must mean that my diabetes is really bad, because otherwise I would just be able to diet and exercise or use pills like the other "Diabetics" they know. 

They often don't realize that the two types of diabetes are very different in terms of cause and treatment, and that just because I'll have to use insulin for the rest of my life doesn't mean I have the disease any "worse" than someone who is able to manage it with diet and exercise...it's just a difference in type.  In fact, it's important to point out that the two types of diabetes are actually two very different diseases even though the end result (high blood sugar) is the same.  Type 2 is caused by insulin resistence (a condition in which your body doesn't use the insulin it makes efficiently), while type 1 is an autoimmune disease in which your own body attacks your pancreas (which it sees as a foreign body), causing it to stop producing insulin.

Secondly, talking about "bad diabetics" further reinforces the notion that we're all condemned to this one big category of people who don't take care of themselves and are destined for horrible health.  I don't know about you, but I try my best to have a positive outlook on life (including my diabetes management), and work very hard to keep my blood sugars within normal range.  Just because I have this disease doesn't mean that I'm automatically resigned to having amputations or other health issues in the future.  In fact, many people don't know that with tight control, your risk for having any diabetes-related complications is greatly reduced or can sometimes be eliminated. 

Furthermore, I believe that referring to people as "bad diabetics" may lead to situations of self-fulfilling prophecies in people who do not have the social support they need to manage their disease.  After all, if you always heard what horrible health you were in and already had problems with your disease, what motivation would there be to make the effort needed to change your situation?  I am a very motivated person when it comes to managing my diabetes, but a lot of people have trouble finding the desire or getting the help they need to adequately manage their health.  These are the people that are often referred to as "bad diabetics," and they're the ones that stand to be hurt the most by the term.

This phrase may seem harmless enough to people without diabetes, but it hurts every time I have to hear it.  It underlines the perception that diabetes is something you somehow caused or brought upon yourself for not living a healthy lifestyle, and that you can "cure" it by becoming more healthy.  Very few people know that type 1 is actually an autoimmune disorder, for which the causes are largely unknown at this point.  Type 2 has a huge genetic component, so even though lifestyle choices can affect its prevention/development or prognosis, it still isn't the person's "fault" for having it.

"Fault"
The notion of fault in diabetes is sad and hugely detrimental for several reasons.  First, it contributes to the general apathy towards diabetes and people who have it, which in turn prevents people from donating to diabetes research.  After all, why contribute money to research for a disease that (they think) people could prevent if only they'd lose weight/eat healthier/exercise more?  It's a vicious circle: lack of research and awareness, more people with diabetes, apathy towards the disease...it needs to stop, but how?  I certainly don't have the answer, but I do believe that more could be done in the area of awareness at very least.  If we could educate the general public on the realities of the disease and combat the common myths surrounding it, there might be more interest in funding diabetes research.

The idea of fault also makes it harder for those of us living with the disease to cope with the realities of having a chronic illness.  Having diabetes is hard enough to deal with without having to feel guilty for having it.  As I've already mentioned, it often feels like a second (or third, or fourth) job; and it's draining physically, emotionally, psychologically, and financially.  It's no surprise, then, that depression has a high comorbidity rate in people with diabetes.  It's obviously a challenging disease to deal with even under the best and most supportive situations, so it can be downright impossible to manage for those who receive little or no support.  The bottom line is that the perception of fault associated with diabetes is clearly detrimental to the people that have it and to the research that could possibly find a cure someday.  It's not fair, but it's part of our collective reality.

"The Cure"
The issue of a cure is also a controversial one.  I've had some heated exchanges with people over the subject, and it just goes to show how hard it is to educate people on a disease that is surrounded by so many myths.  Despite what you may hear from people or in the media, there is currently no cure for either type 1 or type 2 diabetes.  Even with cases of type 2 diabetes, in which many people are able to control the disease through diet and exercise alone, the underlying disease is still there; and since insulin resistence gets worse with age, it will become progressively harder to control for many people over the years. 
The belief that diabetes has a cure is obviously another hit for diabetes research funding, and sadly it's a common one.  One of my next diabetes awareness posts focuses on the need for diabetes education, and will provide some startling statistics on the general public's knowledge of the disease.  The study featured in my future post found that of the people surveyed:

• 67% believed (mistakenly) that there is a cure for type 1 diabetes
• 25% believed that the proper diet could "cure" the disease
• 32% believed that exercise could be a "cure"

Just as insulin is not truly a "cure" for type 1 (it's more like life support, really), diet and exercise and/or pills treat the symptoms of the disease (high blood sugar), not the root of the disease itself.  Therefore, I am extremely hesitant to call them a "cure".  For me, a cure is something that completely and permanently erradicates a disease, not a temporary elimination of symptoms.

The bottom line...
Clearly, the words we use in relation to diabetes (and other disease/disabilities) can have an immense impact on both the people affected by it and the funding for research to find a cure.  Each of us has the power to change this, at least in our own families and communities.  Next time you hear someone use these words, please take the opportunity to educate them in a way that is firm, but not rude or defensive.  Some of these ideas and terms have been around for decades, so it's not going to be an easy or quick change, but it can happen. 

In addition, I've posted this "Diabetes Etiquette [for people who DON'T have diabetes]" handout before, but I thought it appropriate to share it with you again.  I first came across it in my diabetes education class, and think it's a great collection of advice for anyone who doesn't have diabetes on how to treat those they know who are affected by the disease.

Challenges in My D-Life

Help! I'm on the D-Rollercoaster again and I can't get off...
The last couple of days have been pretty tough for me.  I've had some ups and downs with my numbers, and my after-breakfast BGs have still not improved.  It seems like no matter what I do, they're always in the 140-200 range while my lunch and supper postprandials are perfect.  It's frustrating simply because I've tried so many things in an effort to change the trend, but haven't succeeded yet.  Actually, I was following my CGM pretty closely yesterday morning and bolusing accordingly as my BG went up...and up, and up.  I bolused about 8.0 units to cover 24 grams of carbohydrate (a Glucerna mini snack bar and a SF Jello Pudding snack) and ended up at 119 at the two hour mark...so a success, but wow.  Will I really have to take that much insulin every morning?  Today I thought I did everything right--I ate a Jimmy Dean D-lights whole grain bagel w/turkey sausage, egg whites, and cheese.  31g carbohydrate, 18g protein, bolused with ~40% given immediately and the other 60% over 30 minutes (to accommodate the protein content), and no caffeine.  Then an hour and a half later, I was at 192.  Ugh...So. Incredibly. Frustrating.

In Other Not-So-Great D-News...
Other than those post-breakfast highs, I also had to deal with one of the other challenging aspects of diabetes again yesterday.  Over the course of conversations with people about my diabetes, I encounter a lot of frustrating ignorance about the disease.  The way a lot of people perceive those of us with diabetes is often hurtful, and leaves me feeling helpless as to how to correct them in a way that will change their way of thinking without pushing them away or letting my feelings get the best of me. 

I have a lot to say on the subject, so I've decided to break it down into a serious of posts focused on raising diabetes awareness and correcting the common myths and misperceptions associated with the disease.  I completely realize that most people don't mean to be hurtful with their comments, and that they simply come from a place of ignorance regarding the disease.  I'll be the first to admit that I had some of the same ideas before I was diagnosed, even though my sister had been diagnosed with type 1 about four years before me and my dad had had type 2 for a couple of years before.  I've been on both sides of the fence and know that the general public just has very little accurate information when it comes to diabetes, and it's natural for people to want to relate to one another.  For this reason, I think a lot of people are simply trying to empathyze with you and show you that they know there are things that are more difficult for a person with diabetes when they bring these things up in conversation...At least that's what the optimist in me wants to believe.  Some people, though, can be downright rude and mean when it comes down to it.

What is it about diabetes that makes people feel like it's their personal responsibility to make sure you know everything they think they know about your disease?  When people find out you have diabetes, they almost automatically tend to comment on, instruct you, or judge you when it comes to your disease, and they don't always have to use words to do it.  I've come to the conclusion that pregnant women and new mothers must feel the same way, because having that belly or baby somehow makes people believe that you're somehow public property open for comment.  (Not that I am or have been pregnant, but I've had plenty of friends that this has happened to!)  Whatever the reason for this, it happens; and it happens often.  I don't understand it, mainly because you wouldn't tell someone who has cancer or some other disease that they should just "____[insert genius medical advice here]" and all their problems would be solved, so why is it people feel they have the right to do this when it comes to diabetes?

In the end, the only solution is to raise awareness and educate people on the subject.  I'm tempted to create a brochure or booklet on diabetes that I can hand to the people I have these conversations with.  It would make things a lot simpler, and maybe then the information would stick.  I've also thought about writing a column for our local newspaper to raise awareness on a bigger scale and educate people that I may not reach otherwise.  Stay tuned for developments in that area, and for future posts in my awareness series!