Friday, December 23, 2011

Giving Up Control

I wrote last week about my OB appointment and my disappointment at the prospect of a birth experience that was nothing close to what I'd imagined thanks to the fact that I'm automatically high risk due to my diabetes.  Since then, with a lot of thinking and a new perspective (thanks, hubby!), I've come to realize that (a) I can't control everything, in life or labor; and (b) as important as the idea of the labor and delivery experience is to me, it really doesn't matter as much as having a healthy baby in the end.

Of course, all of this may be a non-issue if she doesn't head south pretty soon.  I had another ultrasound (which was a Biophysical Profile, or BPP) the day before yesterday, and while it did go super fast since she was moving, responding, and "breathing" like a pro, she was still breech.  Since I'm at 33 weeks right now, we have just a couple more weeks for her to turn (until week 36) before we'll have to think about an external cephalic version in which the doctor attempts to turn the baby manually.  If you're curious (like I was) about what this procedure looks like, here's a video to help you visualize it:

The problem is, it's not only supposed to be uncomfortable; it also only has a success rate of about 58%.  And, of course, there are several factors that make it less likely to work, of which I have at least a couple.  My OB said that because this is my first pregnancy (and, therefore, my ab muscles are still tight) and since my fluid level is on the lower side of normal, there is a greater likelihood that a version attempt wouldn't be successful.  For that reason (along with the already low success rate), I'm wondering if it's even worth it to try.  There are, of course, risks associated with the procedure as well, and although they're rare, they are pretty scary: placental abruption (which causes bleeding), uterine rupture (yikes), and premature labor due to rupture of the membranes.

At this point, I suppose it's just a waiting game.  If she turns on her own (Note to baby: Please do!), we won't have to worry about the alternatives.  If not, we'll have to go from there.  If anything, mentally dealing with these prospective outcomes has made me a lot more flexible in terms of my expectations of labor and delivery...There is definitely something to be said for giving up control and going with the flow!  Of course, I should realize all of this by now.  As anyone with diabetes knows, you can only control so much when it comes to your body; the rest is up in the air.  Even eating and doing the exact same thing on two different days will produce different blood sugar results, and sometimes you just can't predict how your body is going to respond to certain things.

Even so, there comes a point when you realize that there are some things you can control, and all you can do is your best when it comes to those things...and the rest?  Well, you just hope that it all leads to stable blood sugars.  If not, you correct it and go on.  That perfect balance is so hard to find, and impossible to have all the time.  It's probably one of the most frustrating things about this disease, and leaves you feeling like you're playing a huge guessing game (see also: S.W.A.G. Bolus).  Either way, you learn to live with it (and accept it)...eventually...most of the time.

So the moral of today's story is that, as with diabetes, there are just some things in pregnancy (and life) that you have no control over...and the best thing you can do to keep yourself sane is to accept it and go with the flow.  Otherwise, you'll end up like I do a lot of the time: pulling your metaphorical hair out over things that you have absolutely no influence over, and usually not realizing this until you're metaphorically bald.  Hopefully this time I can follow my own advice.  ;)

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference

Friday, December 16, 2011

OB Appointment//Limitations Due to Diabetes

I had my latest ultrasound and OB appointment yesterday, and while it wasn't super eventful, it was a little frustrating.  We found out that our little one is still breech, so she only has a couple more weeks to flip or we'll have to start discussing a C-section or an external cephalic version, neither of which are options I hoped to be considering.  For those of you who are familiar with my personality, you know that (a) I'm a slight perfectionist and (b) that I like to know as much as possible about everything that is happening to me (or might be in the future).  Because of this, I've not only read more than 20 books on pregnancy (and I'm not even exaggerating--just ask my husband, who gets exasperated by the stacks laying around the house!); I've also read another five or more books specifically on labor and childbirth--all so I can feel more prepared for what's to come.

The more I came to learn about everything, the more I realized that I wanted as natural a birth as possible with little or no interventions.  As long as the baby and I are doing well, I want to go into labor on my own and be allowed to progress naturally (i.e., no Pitocin, artificial rupture of membranes, etc.) with no stringent time limits.  I want to be able to be as active as possible during labor, with access to a birthing ball and bath/shower instead of an epidural.  Of course this means that I would forgo the usual EFM (External Fetal Monitoring) in favor of a nurse listening to the baby's heartbeat intermittently with a Doppler or fetoscope, because EFM requires you to be tethered to a machine.  Ideally, I would like to be allowed to eat and drink as needed, especially because I've had no issues with nausea during my pregnancy.  I will control my insulin pump as long as I am capable to do so.  When it comes time to push, I want to try pushing spontaneously (NOT on my back) without stringent time limits, and to risk a natural tear rather than having an episiotomy.  After delivery, I want to be able to hold the baby immediately, before any routine procedures are done.  I also want the cord to be cut only after it stops pulsating and to deliver the placenta spontaneously and without assistance.  Because I plan to breastfeed exclusively, I would ask that no sugar water, pacifiers, or formula are given unless deemed medically necessary.

I completely realize that this scenario is somewhat idealistic, and relies on everything going perfectly.  And of course, there is also that big elephant in the room that begs everyone's attention: the fact that my diabetes automatically labels me "high-risk," even if everything was to go perfectly.  Apparently, my diabetes makes medical professionals nervous, even though I've had an almost superwoman-like level of control and everything up to this point has progressed easily with no red flags...which brings me to the most frustrating part of my visit yesterday.  My OB has been fairly laid-back about everything thus far, but once we started discussing labor and delivery, it became clear that in his eyes, my having diabetes limits my options drastically.  Never mind that I've only dealt with this disease for a little over a year, or that my highest A1c to date (right after diagnosis) has been 6.5%...or that I've had absolutely NO complications to speak of--not even a hint of the possibility of a complication, or that I'm otherwise healthy.  Apparently, the fact that I (very purposefully) brought my A1c down to 5.7% (well within a normal person without diabetes' normal range) prior to conception and to 4.9% during the first half of my pregnancy doesn't matter when it comes to statistics.  Women with diabetes have a higher incidence of certain complications, and that's that.  That is what I have a problem with: I have a sneaking suspicion that when people refer to these statistics, they fail to differentiate among all of the factors and extremes of the disease.  All of us, type 1 and type 2, poor-controlled and well-controlled, those with complications and those with none, are lumped into one giant category of "women with diabetes."  Of course there will be a higher incidence of risk in such a group when these factors are not controlled for!

For that reason, I have a huge problem with being treated according to statistics instead of being evaluated as an individual.  I refuse to be placed in the same category as someone who has a very poor level of control, preexisting complications from the disease, and little interest in their health overall.  I also feel that the fact that my sister (who also has T1 diabetes and had blood pressure problems during her pregnancy) saw the same OB works against me.  Yes, we are sisters, and yes, we both have diabetes; however, we are very different in every way, least of all in regard to our individual disease.  Just because she happened to have a not-so-great outcome for her pregnancy (she delivered in late October by emergency C-section at 34 weeks due to the preeclampsia, but the baby is fine now) doesn't mean that I will.  I do not appreciate being told that "things can go downhill very fast for women with diabetes," because once again, there has been zero evidence to lead us to believe that this will be the case in my case.

I was super disheartened after my appointment yesterday, and still haven't decided what to do.  On one hand, I wonder if it's worth it to confront my OB about all of this, because you just can't change some people's minds.  On the other hand, I feel like I have the responsibility to at least try, not only for me but also for the women with diabetes that will come after me.  At this point, I'm just so tired.  It's not fair that I have to fight to be treated normally because of a disease I did not ask for, or that it would all be a non-issue if I didn't have diabetes.  I feel like I fight this fight on a daily basis in order to change the public's perception of the disease, so that I have to deal with this while trying to enjoy the last of my pregnancy seems especially cruel. Like many women with diabetes have commented, this is the one time I've truly felt limited by my disease.  If I had to have a C-section due to the fact that my baby is breech, fine--that's obviously beyond my control; but to be told that I can't have the birth experience that I so badly want solely due to my diabetes, even and especially if everything goes perfectly, is heartbreaking and extremely frustrating.  I want to be a part of changing the world's perception of this disease, but sometimes that mission can seem so futile and tiring.  Sometimes, and especially now, I just wish more than anything that I could have a normal, working pancreas.

Wednesday, December 7, 2011

Basal Rates, Artificial Pancreata, and D-Judgment

Oh, how quickly time seems to get away from me these days...I intend to write a blog post, then other things come up, and before you know it it's been another two weeks since I last posted!  I have to say, I really admire those in the DOC who are able to consistently update their blogs on a daily basis.  Between managing diabetes (which, of course, is another full-time job) and life in general, I have a hard time keeping up with mine at times.  Sometimes I wonder how I'm going to manage it all once the baby is here, but I know it'll work out...somehow!

At least life according to the D-monster has been better lately.  I was getting frustrated with my numbers and my apparent inability to control them despite all of my effort, so I finally (FINALLY!) took a step back to evaluate the situation.  Duh.  My basal rate patterns didn't make sense at all, and it took me a couple of months to figure that little piece of information out!  I suppose with everything going on, I was just increasing the rates themselves over time without looking at how my overall pattern was functioning (not well, by the way).  The day that I realized this, I decided to start from square one and recalculate everything based on the total daily dose of insulin I'd been using.  To do so, I had to pull out my trusty "Think Like a Pancreas" book by Gary Scheiner and review how to calculate all of the basal/bolus rates and ratios.  With a little math (which I always enjoy--seriously, because I'm a nerd), I had a basal/bolus pattern that was a little more sane looking:


It had been so long since I'd done such a complete overhaul that I was a little worried about highs and lows the next day, but everything worked out surprisingly well.  It's amazing what a little perspective can do...I was just metaphorically kicking myself for not doing it sooner!  My numbers have been much more even, and I haven't had near as many out-of-range results as I was having before.  Not that they were horrible before; it's just that I'm kind of a perfectionist and like for all of them to be as close to "normal" as possible--is that so much to ask?!

In other D-news, how about that Artificial Pancreas Project?!  I'm so excited that the FDA has started the process that will hopefully lead to approval in a timely fashion.  It's such a major step in the right direction for those of us living with T1, and although it's not a cure, it does represent a major advancement in treatment technology.  For more on what this means for us, please read this article:  Interpreting the FDA Guidance for the Artificial Pancreas

This morning I got a blog update from Jacquie Wojcik at Typical Type 1 in my email, and it was an awesome one.  You can read the full post here, but the general gist of the post was about how judgmental people without diabetes can be at times.  If you deal with this disease, no matter the type, you've no doubt encountered it at some point--if not more frequently.  Even when people don't make rude comments or say anything out loud, sometimes you can feel their judgment anyway.  It can make eating in public a psychologically difficult experience, because you know that if you split a dessert with your lunch buddy, there will probably be somebody who is thinking, "She has diabetes, she shouldn't be eating that!"  It's not that I mind talking about my disease or correcting misconceptions when people are genuinely interested; it's the ones that try to impress their diabetes "knowledge" and horror stories upon you that can be irritating at times.

I like to think I generally have a good, positive attitude and outlook on life, but even that can be challenged when dealing with this type of thing on a regular basis.  I've thought before about printing some of these diabetes etiquette cards for people who don't have diabetes to keep on hand for such situations, but I don't know how well received or effective that would be.  Instead, the action I've taken is one I'm super comfortable with: I wrote.  I mentioned it in my last post, but for American Diabetes Month I wrote an article for our local newspaper about the myths and misconceptions surrounding the disease so that maybe-just maybe-it will reach those that need to know these things.  Like I've said before, even though it's hard, I can deal with the's the kiddos who live with diabetes that I worry about.  Life with this disease is hard enough without having to defend yourself and your decisions all the time.  We already have to micromanage ourselves, so it's no fun when others try to do it for us as well.  Like one person in the comments said of Jacquie's post,  "It’s amazing how much more people care about/watch what I eat since I was diagnosed Type 1. They didn’t give a crap about what was on my plate before."  So very true.  The not-so-nice part of me sometimes wants to ask these people, "So just because you don't have diabetes, it's okay for you to eat that third piece of cake?!"  But I don't, because I could never actually say that to anyone, no matter how rude they've been to me.  In the end, I have to realize that there are some people who just don't get it.  I can try to change their perceptions, but sometimes their ideas are so long-held and concrete that there's not much anyone could do or say to fix the situation.  So instead, I just try to do the best I can and educate the ones who are willing to learn.

Monday, November 21, 2011

Update Time!

I honestly can't believe it's been so long since I last posted!  Suffice it to say, it's been an incredibly busy one, especially because it's American Diabetes Month...It seems like I've had something diabetes-related to do since the beginning of November.  I'm not complaining, though--I am a very willing participant in all of the awareness activities I've done, and truly believe that all of our efforts are making a difference for the people who benefit from them!

I was contacted last month by Laura from Extreme Southern Couponing.  She has a 9 year old daughter who was diagnosed with type 1 diabetes two years ago, so she was putting together guest posts to feature on her blog throughout the month of November.  She had come across my blog and asked me to share my story with her readers.  Many of you already know most of the details of my diagnosis and journey thus far with T1, but if you're interested you can read it on her site here.

On November 15th, I had an OB appointment and ultrasound in Amarillo, so my mom, sister, and I met my aunt and cousin at Beef O'Brady's for their second "Dining for Diabetes" fundraiser.  They donated a portion of their ticket sales that night to the JDRF, so we got to eat some good food for an awesome cause!  I also got to meet the Branch Manager for the Panhandle JDRF in person, as well as some of the other board members.  They are all incredibly nice, welcoming people, and I can't wait to work with them.

The next day, the article I wrote for the local paper on diabetes awareness was published.  I was incredibly excited to see it happen, because it's something I've wanted to do for a while.  I decided to focus on the myths related to diabetes, because there are so many misconceptions surrounding the disease.  For those of us living with it, having to clear up these myths on a regular basis adds to an already challenging life, so my hope was that by reaching people in our community on a larger scale, things would be a little easier for people with diabetes--especially the kids and young adults who have to deal with it.  It turned out to be a long article, so I'll save it for another post!

I *think* that covers everything diabetes-month related thus far, but I could be missing something.  I was reading "Do Chocolate Lovers Have Sweeter Babies? The Surprising Science of Pregnancy" a few nights ago, and it said that a woman's brain shrinks by 4-6% during the nine months of pregnancy in order to build the baby's brain (at least according to one theory) husband says I'm definitely on the 6% end of the range!  Either way, my brain power has been somewhat diminished for the past several's a strange feeling, being in a constant fog.  Then there are the days that I'm convinced I'm losing it, like the day I posted this on Facebook:
I've come to the conclusion that I'm losing my mind! I had to call Mom to ask her a question, but when I dialed her number on my cell phone, the office phone started ringing, so I had to hang up on her. I then picked up the office phone, and no one was there, so I tried Mom's number again. About that time, the office phone started ringing again, so I had to hang up to answer it...And once again, there was nobody there. This went on about five times and I was starting to get extremely frustrated before I realized that *I* was actually calling the office instead of Mom's cell phone number and hanging up on MYSELF. I think I need a break...♥
The diminished mental status and achy hips and back, though, I can deal with.  They're constant reminders that my body is on a higher level of functioning right now to make sure our baby gets everything it needs, and I'm completely okay with that.  When I had my ultrasound on the 15th, I was nervous once again--though not quite as nervous as I was before our first big one in September.  I suppose the worry that everything is developing as it should never quite goes away, but I'm glad that things were still on track with our little one!  She's in the 60th percentile even though I'm measuring smaller, and although she was breech, everything else was where it should be.  As it is in diabetes, "normal" is an amazing thing when it comes to your baby's development!  I'm just hoping she decides to head south sometime in the next 9-10 weeks...=)

My sister also had her baby a month ago after she developed preeclampsia and had to have a c-section at 34 weeks.  Her baby is still in the NICU-she had some breathing problems in the beginning and digestive issues after that, but she's stabilized and is doing better.  She just has to meet all of her milestones before they'll let her go home!  My relationship with my sister has been better since her baby was born, and I'm glad that we've been able to put most of the anguish of the past several months behind us.  The selfish part of me still finds it hard that everything is revolving around her and her baby at this point, but that's just because everyone is so focused on all of that that I sometimes forget we're having a baby soon.  I hear about it so often that I sometimes think of our little one by her baby's name, and that frustrates me!

It's also been hard having my parents gone so often, because it leaves me to take care of the office by myself--something that isn't out of the ordinary, but that can be incredibly stressful at times...and right now, I need to start slowing down rather than taking on more than my share.  We don't have much longer until she'll be here, and we still have so much to do!  I know it will all get finished, but it's still hard sitting at the office when I know there's so much I could be doing at home.  Hopefully I'll have enough time off in the end to get a few things done that I haven't been able to work on, like the quilt that I started over a year ago...The quilting part is not far from being finished, and then I have to bind it, but I never have a solid chunk of time to get it done.

Then I still need to get in touch with a pediatrician, work on my birth plan (/wish list), and about a million other things to prepare for the actual labor and delivery part of things...I try to not let it all stress me out, but sometimes the amount of things I have left to do hits me like a ton of bricks--or at least with the force with which our little girl kicks me sometimes!  Oh-speaking of her kicks, my hubby finally got to feel her kick for the first time about a week ago...I'd been able to feel it from the outside for about a month, but she never would cooperate when he was around!

Well, I think that pretty much covers what's happened over the past few weeks, so I guess I better get back to work!

Friday, October 28, 2011

Diabetes Article in Health Magazine--Another Setback

I was initially excited when I saw an article in the November 2011 issue of Health magazine about diabetes—after all, November is American Diabetes Month!  However, once I started actually reading the article, I was appalled.  Not only was it filled with misinformation and incorrect but rampant diabetes stereotypes, it was completely insensitive.  No wonder people like the woman in the article are “embarrassed” to let others know they have diabetes!  What disappoints me the most is to see such a great opportunity for public education and awareness turned into such a misrepresentation of the disease…a misrepresentation that people with diabetes, like myself, have to fight every day to correct.
I was diagnosed last year with type 1 diabetes.  My younger sister also has type 1, and my dad (along with a lot of my extended family) has type 2.  When I was diagnosed, I made it a point to learn as much as I could about the disease, and have read countless books on the subject.  I also keep up with diabetes news and research and follow others’ diabetes blogs on a daily basis in addition to hosting my own.  In addition, I was recently appointed as a board member for the local branch of the JDRF.  Even though it’s not my paying job, diabetes advocacy is incredibly important to me.  The biggest problem I encounter, however, is not that people don’t know about the disease; it’s that what they think they know is usually incorrect—and usually, it’s due to years of exposure to myths and half-truths about the disease, thanks at least in part to media publications such as this one that further reinforce its falsehoods.
Although it is true that being overweight or obese is a risk factor for developing diabetes (at least for type 2, that is), it isn’t the be all and end all of the disease.  First of all, not everyone with diabetes is overweight.  Type 1 diabetes develops irrespective of weight or health status, and there are many people with type 2 who are of normal weight.  Furthermore, what many sources neglect to point out is that you have to have the genetic predisposition and other risk factors to develop the disease—therefore, not all people who are overweight will develop diabetes.  Secondly, losing weight is not a magical “cure” for the disease.  I have a real problem with people using the word “reverse” in relation to the disease, because “reversing” diabetes is simply not possible.  Remission is a better word, because it at least acknowledges that if you gain the weight back, change your activity level, or become ill, the symptoms of the disease will return.  What is most important to note, however, that even in symptom “remission,” the disease is still very much there.  Diabetes is a progressive disease, and insulin resistance (the main disease mechanism of type 2 diabetes) increases with age.  Even those who are initially able to completely manage their diabetes with weight loss might eventually have to pursue more aggressive treatment options as the natural progress of the disease occurs.  Failing to recognize this is simply dangerous, because it leads people to believe that once their disease is well-managed, it will never be a problem for them again.  I truly believe that this leads a lot of people with type 2 diabetes to not get the proper care and treatment that they need, because they then fail to give their disease the attention it requires.  Therefore, to call weight loss a “groundbreaking new way” to treat diabetes is not only ignorant (weight loss has been used as a part of treatment plans for type 2 diabetes for years), it is also incredibly irresponsible—and to call the woman in the article a “former diabetic” only serves to reinforce this dangerous fallacy.
Articles like this one are responsible for supporting incorrect and negative ideas about diabetes that those of us living with the disease are forced to combat on a daily basis.  The statement that “Most people with type 2 diabetes could actually reverse it if they lose enough weight” is especially harmful, because it bolsters the notion that diabetes is a “fat, lazy person’s” disease that could be controlled if only they would work hard enough.  This stereotype is not only hurtful and extremely insensitive; it also has the potential for damaging fundraising efforts…after all, why contribute to diabetes research if it’s something people can “cure” themselves if only they’d work hard enough?  For those of us with type 1, especially children, this typecast is particularly harmful.  Many people do not understand the differences between the two types of diabetes, and all of these ideas could lead to dangerous non-management of the disease.  There is also a growing problem among adolescents with type 1 in which patients will purposefully withhold insulin in order to lose weight.  This leads to dangerously high blood sugars that force the breakdown of muscle and fat, but can also cause diabetic ketoacidosis and other complications.
These are the reasons I felt compelled to write such a lengthy, detailed letter...a letter that was too long to actually send to the editor, of course!  Articles on disease awareness (especially in major publications) are wonderful, but only if they contain accurate information.  In the future, I beg all magazines to please keep this in mind when undertaking such ventures!  Diabetes awareness and education is achieved one person at a time, but so are harmful setbacks.  I hope that from now on, all publications will make an effort to be part of the former.

For those of you who are interested in reading the article in its entirety, it begins on page 95 of the November 2011 issue of Health.  I couldn't find it online, otherwise I would have linked to it here!

Friday, October 21, 2011

Spreading the News/JDRF

Last week I got some amazing news that I couldn't wait to share...But since "real" life often gets in the way of blog posting, I had to wait until I got caught up on everything before I could post anything.  Now that I have a break in my workload (but not my personal life!), I decided I better take advantage of it and get to writing!

This past Thursday, I received a call from my CDE while I was at work.  After some catching up, she told me that the Panhandle Branch of the JDRF, based in Amarillo, was trying to expand awareness into other areas around the Texas Panhandle.  She said they had an opening on the board, and was wondering if I would be interested in taking the position since I live in a small town in the surrounding area and because she thought I would be a good fit for the "job."  She told me that they had a board meeting that day and that after she brought up my name for nomination and they voted on it, she would let me know something.  After I got off the phone with her, I couldn't help but tear up as I was telling my mom about it...Not only do my pregnancy hormones have me in tears more often than not these days, I was just so honored that she would think of me for something so special!

I am incredibly excited for the opportunity to be involved in raising diabetes awareness, especially on such an awesome level for someone as relatively young as I am (at least I think 23 is still considered "young" these days!).  I had always told my family that I wished I could become a CDE in order to help people in our area manage their diabetes better, but since that requires prior experience as a nurse/psychologist/dietician/etc., there is no way that it would be an option for me--at least not anytime in the near future.  As a local JDRF board member, I will be able to be a part of diabetes education, outreach, and fundraising while still maintaining my regular job, which is something I didn't think would ever be possible.  I was already planning on writing an article for the local paper in November for American Diabetes Month, but now I can do it in a more "official" capacity!

This morning I got a call from the two of the ladies from Panhandle JDRF welcoming me to the board and filling me in on the details about what's to come.  They want to organize some school walks around the area, and I'm ready to get involved!  The next few months are going to be busy ones for me (especially since we only have around 14 weeks or so before our little princess is here!), but I know that God usually gives us these kinds of opportunities when we least expect them, and it's up to us to take advantage of them.  I would have never in a million years let this pass me by, and I am so grateful to everyone involved for giving me the chance!

Before I go, I wanted to share the link to the Artificial Pancreas Petition for the JDRF.  If you haven't already signed it (or heard of it), I would encourage you to follow the link to find out more!  This is the biggest advance in diabetes technology in our lifetime, and it has the potential to change lives--so needless to say, it's very important that the FDA approves it.  It only takes a minute, but it will make a big difference in the lives of those with diabetes!

JDRF Artificial Pancreas Petition

Friday, October 7, 2011

The Tough Things in Life

Anyone who deals with diabetes on a daily basis knows it's not easy.  I never in a million years thought it would be something I'd have to deal with personally--it was something that happened to "other people."  Then, once I was diagnosed, I realized that even though it's overwhelming at times, it is manageable.  Some days are easier than others, of course, but even with all the carb counting, insulin-balancing, and trying not to let it take over your life, it's doable.  Some people tell me that they "don't know how [I] do it," or that they admire how "strong" I am...Little do they know that when you have a chronic illness, being strong is the only choice you have--otherwise, the disease wins.  I definitely went through a grieving process over the loss of my former "no diabetes" self, but eventually (with a lot of help/reality checks from my husband), I came to terms with the fact that this was just something I'd have to deal with (for the rest of my life).  Some days I don't want to do it, but I do--because I refuse to give in to diabetes.  It may be my stubbornness, but from day one, I've been determined to keep it in check as much as I can and/or kick its butt when I'm feeling up to it.

On the days I'm feeling especially triumphant, I'm able to see that there has even been some good that has come from my diagnosis.  For starters, I lost somewhere around 10-15 lbs as a result of my carb counting, and I took up running--which is something that would shock my junior high and high school coaches!  Most importantly (through lots of hard work, research, and help from my awesome CDE), I was able to rise to the challenge of the diabetes learning curve fairly quickly and take control of my blood sugars to bring my A1C down to the proper pre-pregnancy levels I was shooting for.  It wasn't easy (and still isn't), but I did it.  I would never say that I've conquered diabetes, though, because as soon as you think you have the hang of things, it throws you for a loop again...I just refuse to ever give it the opportunity to conquer me.

On the brighter side of things, diabetes has made me a stronger person.  I suppose you don't realize how strong you are until you're faced with one of your biggest fears, which for me has always been losing my health.  Even though I technically (and thankfully) haven't actually lost it, I do feel like I can no longer consider myself a "normal," healthy person, even if I'm otherwise healthier than a lot of my acquaintances.  When you are forced to face your fears, though, something happens: you (usually) realize that it isn't as bad as you imagined it to be.  Some days diabetes looms in the background, waiting to pounce if I let my guard down long enough; others, it's very much front and center, demanding my attention on a sometimes minute-to-minute basis.  Either way, it's a pain (sometimes literally), but doable.

One thing dealing with diabetes didn't prepare me for, though, is one of the other biggest challenges I've faced in my life.  I've written a few times about how my sister's pregnancy has affected me, and it's still an ongoing and very emotional battle.  It's something else that I never thought I'd have to go through, so finding myself in the middle of it all wasn't just a shock; it's truly been one of the hardest things I've ever had to deal with.  I think a lot of it has to do with the fact that it's a situation I have no control over, even though it affects me and the rest of my family in a huge way.  I resent the fact that she's the one who made her decisions, and yet we're all having to deal with the consequences.  From an outsider's view, many people may wonder why this would be such a difficult situation--after all, women (and younger girls) have unplanned pregnancies all the time.  That's the kicker, though...we all still wonder (and probably always will) if my sister's pregnancy wasn't planned, due to a lot of variables that were in place at the time.  In addition, the timing of it all made it even worse, because it happened right before I was supposed to get my A1C results back so that my husband and I could get the green light to start our family, something I'd been working towards for months, and that everyone knew about.  That, combined with the fact that I have to work full-time to keep my insurance in order to pay for my diabetes-related supplies and expenses and contribute to our bills while she has been jobless her entire pregnancy and has therefore been living off my parents, contributes to feelings of resentment toward her and everything related to the situation.

Even though people tell me all the time not to let her pregnancy interefere with ours, the reality is that it does.  Especially now that her due date is getting closer, my parents are stretched thin taking care of her preparations and appointments (which are very frequent since she's considered double-high-risk due to her own diabetes being so out of control when she got pregnant), and that takes a toll on everyone.  They're stressed out trying to get things done, and that impacts me directly since I work with them every day.  Furthermore, their being stressed makes me feel guilty for expecting anything related to my pregnancy from them since they're already so all-consumed with her.  My mom has been taking me to the majority of my appointments since my husband can't get off work to come with me, but even though my appointments are still three weeks apart, that means more time away for her (both of us see a doctor and will deliver two hours away from our small town since we're high-risk).  Also, my mom always told me she'd paint the nursery for me, but I don't think that's going to happen either.  My parents stopped by one night last week to see the paint color I'd picked out, and my dad told me they'd come help me "after they got done with [my sister's] stuff."  Even though my husband (very lovingly) told me he'd take care of it and I've had friends offer to help, it still hurts to know a lot of things like that wouldn't be an issue if I weren't pregnant at the same time as her.  It may sound horrible, but I honestly can't help but think about how different everything would be if things would have happened the way they were planned instead of the way they've turned out.  I know that all of this is somehow part of God's plan, but it's so hard to see how at the time.

The last couple of days have been particularly tough emotionally, and I sometimes wonder how I can handle all of this anymore.  I'm just so tired of having to deal with all the comments and no one knowing that I'm pregnant ("too"); or even if they do, only asking about her baby.  Even though I know that no one means bad by any of it, it still hurts...a lot.  I spend a lot of the time I'm in public trying to hold myself together, because I can only deal with so much before I can't stop the tears from coming any longer.  What's even harder than that, though, is dealing with my own family's tendancy to talk about my sister all the time.  My mom has been having a lot of fun buying baby stuff, which is great; however, she can't tell me about anything she's bought for our baby without telling me about my sister's gifts as well.  We literally can't have a conversation about my pregnancy specifically or anything baby/pregnancy-related without it somehow relating back to hers, and that wears on me--especially since I'm already more emotional than usual these days.  My mom knows exactly how I feel about everything, and even though I know she'd rather us all get along, it's just not going to happen anytime soon.  I wish that rather than trying to force the issue, she'd just let me enjoy what's left of our pregnancy without having to focus on my sister.  I already feel like I've had to share everything up to this point with her, and now that I'm finally able to enjoy things a little more since we've found out the sex of our baby (girl!), I just want to be able to that without being hindered by anything else...Is that really so much to ask?!

Tuesday, October 4, 2011

"Oh, the (CGM) horror!"

[I'm going to apologize ahead of time for my writing being a little disjointed as a result of my pregnancy brain coupled with the past few days being pretty stressful/crazy!]

Before I got my insulin pump and CGM (Continuous Glucose Monitor), I wrote about how scared I was of the humongous sensors for the latter (here & here).  Of course, that fear turned out to be pretty unfounded, as my actual experience was a lot less painful (and dramatic) than I expected it to be.  Since then, using my CGM has been fairly uneventful, other than a couple of slightly painful insertions (though nothing too horrible) and the issue of removing the insertion needle, which is really the hardest part and would go a lot smoother if they were somehow able to lubricate it a little better...Pulling the stubborn thing out while simultaneously trying not to remove the entire sensor is a difficult feat when it involves weird angles and a tiny grip!  Other than that frustration, my ventures with the CGM have been fairly positive.  It's been a great tool in managing my diabetes, and has provided a lot of useful information in setting my basal rates and seeing how different foods affect my blood sugar level. 

Last night, however, I had my first gusher...which really wasn't as bad as it sounds, but was stressful all the same.  I decided I'd put in a new sensor after a few days of not wearing one (or maybe a week or two...I can't remember anything these days!), so I got all my supplies together last night after my bath so I could get it done.  I picked a spot on my thigh, which is my CGM site of necessity these days (since the abdomen is off-limits due to pregnancy, and consequently my hips/"side butt" already get used for infusion sites), and "bit the bullet," so to speak--which means that I get everything ready for insertion and look away before deploying the sensor, an important step once you see the insane speed at which the giant needle is propelled toward your body.

If you want to see a video of the insertion process made by a young girl with diabetes, check out this YouTube video.  The actual insertion can be found about three minutes in.  On a side note, I may try her method of pulling the needle out before sticking the tape down since she says it's "easier"...she looks like a pro!  My favorite part is at five minutes in, when she nonchalantly explains that there "might be blood."  Yes, there might be.  A little blood=normal, no problemo; a lot=no good, sensor no worky.  Kids who deal with this disease are truly awesome and never cease to amaze me with their bravery and "matter-of-fact"-ness!

So, back to the rest of the story.  I pushed the button on the insertion device (which, if you notice in the video, involves a slight delay between the time in which you begin to depress the button and when the sensor is actually released; a torturous time that makes you question whether you really want to go through with the process or not), and after the sensor was properly inserted, prepared to anchor it down for the next several days.  Before I removed the paper backing on the tape, though, I noticed that there was quite a bit of blood at the back of the needle, not at the actual insertion site itself where it normally bleeds.  That, coupled with the unusual amount of pain that was registering inside my thigh, made me decide to remove it and try again with a new sensor.  However, once I pulled the entire thing back out, I realized that I must have hit a vein because it kept bleeding, and bleeding, and bleeding...At that point, I started to freak out a little in spite of myself, because I'm sitting there staring at a growing spot of blood on my leg and nothing to wipe it off with or stop the bleeding, or so I thought.  If I would have been able to take my eyes off the site, I would have realized that I probably had an alcohol swab or sterile gauze pad in the box of my supplies (within arm's reach), but nevertheless, I instead called for my hubby's help.  He handed me a napkin, which I then used to apply pressure to the site long enough to stop most of the bleeding.  After a while, I stood up to go throw the napkin in the trash can, and thanks to all the adrenaline and freaking out, blood simultaneously rushed to my head and to my now-throbbing thigh.  Pain resulted in both places, and I started to get dizzy, so I sat down in the living room floor and put my head between my knees, or as close to that general area as a pregnant woman can anyway.

Upon recovering from the dizziness, I got back up out of the floor and then had to make a decision as to whether or not I wanted to get a new sensor to put in.  After about half a second of reflection, I decided that I couldn't go through the process again after the trauma it caused the first time.  I figured it wouldn't hurt to leave it for another day, and allow my leg (and emotional state) to properly recover in the process.  Today my thigh still hurts, and although it isn't bruised on the outside so far, I can feel a knot under the skin at the insertion site.  For that reason, I'll use my other thigh when I put a new sensor in while the pain and swelling goes down.  Tonight I'll (probably) try again, and hopefully it will go better this time around!

Thursday, September 22, 2011

Our Vacation, The BIG Ultrasound, & My Latest A1C

It's been a couple of weeks since I last posted, and let me just say...they've been a busy (and eventful!) couple of weeks.  First, an update: I never received a call about our prenatal screening tests, so that's a big "yay!"...No news was good news, so that's definitely what we were hoping for.

We also had our big appointment with a maternal-fetal medical specialist last week that included a level 2 ultrasound to check for developmental/anatomical abnormalities.  Level 2 ultrasounds are fairly commonplace these days, even in women who aren't designated as high risk; however, my OB sent us for one specifically because I'm automatically labeled high risk thanks to my type 1 diabetes.  From my first appointment, my OB has been very supportive and encouraging, and was impressed with my A1C and tight level of control.  I appreciate the fact that he's treated me as normally as possible, because a lot of doctors have a standard procedure for treating "diabetic" women (as most of you already know, I hate that label!) that they don't deviate from, regardless of the patient's level of control.  The way I see it, if I'm able to keep my numbers relatively normal and generally within a normal person's range, there is no reason I should be automatically sentenced to C-section or induction at a certain cutoff point, provided everything continues to go as well as it has for the first half of my pregnancy.

I appreciate my OB's approach to my care thus far because he has been thorough and cautious, but optimistically so.  He has said from the beginning that if I'm able to keep my blood sugar levels as close to normal as possible, I should have an easy and uncomplicated pregnancy.  Of course, bad things can happen in pregnancy even for the healthiest of women, so he's also made recommendations (like the prenatal screening tests and level 2 ultrasound) to ensure that everything is developing as it should.  He did (predictably) go over the risks commonly found in pregnancies with preexisting diabetes, but thankfully didn't dwell on them.  Like anything else diabetes-related, pregnancy with diabetes is very YMMV (Your Mileage May Vary), and luckily my OB realizes that.  Some women have excellent control, but their prexisting complications from diabetes (like retinopathy) make it impossible for them to delivery naturally.  Other women have horrible control, but are able to (somewhat miraculously) have a normal pregnancy and delivery.  Therefore, I believe it's important to focus on the individual patient's unique situation in lieu of a textbook procedural code.  In that way, I feel very lucky to have found a doctor whose philosophy is closely in line with my own.

Due to some differences/problems between my OB's practice and the maternal-fetal medical specialists in the city where my doctor's office is located (about two hours from where we live!), we were sent to a different city three hours away to have our level 2.  Since we had a wedding in a nearby town the weekend before, we just decided to make a mini-vacay out of it and spent a few days in Carlsbad, NM, the week before our appointment.  We toured the Caverns and did A LOT of walking, but had a blast.  We stayed at the Trinity Hotel, an old bank that was renovated into a nine room hotel and restaurant.  The room we stayed in had a super comfy bed and the biggest bath tub I've ever seen:

The restaurant, which we ate at twice during our stay, was WONDERFUL.  The first night, we both had the lobster and cheese ravioli with vodka sauce, which was to die for, along with a piece of berry white cheesecake.  A couple of nights later, my husband had a ribeye and baked potato, and I had the Mastachana, penne pasta with massive grilled shrimp and a tomato-bacon sauce.  Per my husband's request, we also shared another piece of the same cheesecake we had before.  It was definitely some of the best food I've had in a long time!

The first day in the Caverns, we did the self-guided Natural Entrance tour, which begins at the Natural Entrance (duh) and ends in the Big Room.  I had never been to this or any cave, so it was a pretty cool experience.  It's like a completely different world down there...a world that remains a constant 56°F yearround.  Surprisingly, I wasn't cold, despite the fact that I was wearing a tank top and capri pants...I guess all the walking (mostly downhill, much to the irritation of my toes) kept me warmer than usual, because normally I'm freezing at 72°! 

Unfortunately, my blood sugar decided to not cooperate that day, leaving me stressed out at 308 post-lunch before we hit the trail.  I hadn't seen a number over 300 since I started insulin, and any number higher than 140 makes me nervous...Not to mention, I still struggle sometimes with the diabetes numbers game even though I have a generally healthy attitude about it most days (see #4 of this post).  It's hard enough for me to deal with an out-of-range number normally, but now that I'm pregnant that anxiety is sometimes through the roof.  After all, it's not just my life that depends on my numbers anymore.  Anyway, I corrected and hoped (and prayed) that the 1.25 miles of walking would bring me back to normal range.  About halfway down I tested again, and was at 209.  My hubby reminded me to not overdo it, but I'd rather be low than high any day, so I did another small correction.  By the time we finished our tour and made it back to the vehicle, I was at 46.  A Nature Valley Oats 'n Honey bar brought me back to normal range once again, and we were back in business.

The second day, we took a ranger-guided tour with 13 other people through the Left Hand Tunnel, which takes you through an unpaved and unlighted part of the cave not open to the general public (except on the guided tour) with only an old-fashioned lantern to light your way.  My husband wanted to take the more adventurous Lower Cave tour, but it was off-limits after I told them I was expecting...I'm pretty sure I would have been able to do it, but they didn't want to take any chances!  Anyway, the tour we took was pretty awesome since we were with such a small group and there was so much neat stuff to see (i.e., a mummified bat).  Towards the end of the trail back, we gathered in a circle and after telling what our favorite part of the tour was, blew out the candle in our lanterns.  The resulting blackout was an all-encompassing darkness that I'd never experienced before.  With absolutely no natural or artificial light in the cave, you literally couldn't even see your hand in front of your face.  Our ranger then re-lit our lanterns for the rest of the tour, and we ended up back by the restaurant area (750ft underground).  Since we'd seen the rest of the cave the day before, we decided in lieu of taking the elevator back up, we'd hike back out the natural entrance.

Mummified Bat (Lying Diagnally Across Above Rock)

Lanterns From Left Hand Tunnel Tour

The reason you "walk" down and "hike" up, we found out, is because the steep grade that leaves your toes aching on the way down is particularly murderous on the way up.  In the cold cavern air, my pregnancy lungs had to be given rest fairly frequently, and my buns/thighs/calves were all aching by the time we made it out.  The funniest part of the whole thing was when we encountered an older couple on their way down.  The woman asked her husband if they'd be hiking back up as well, and when I told her how difficult it was, she told me, "Well if you need any help, just holler and I'll come get you!"  Fortunately, we made it back to the surface (mostly) unscathed, and got back in the truck to return back to town--only to stop at the Living Desert Zoo and Gardens State Park, which gave us another 1.3 miles of trails to walk through that afternoon!  Although there weren't a ton of animals to see, it was a pretty neat place.  I was sad the cougar wasn't in residence (or possibly stalking us unseen) that day, but we did get to witness some prairie dogs freaking out when they noticed the wild hawks circling above them (hilarious!) and a mad rattlesnake (safely behind glass, of course) that looked like it was ready to strike at us.

We left the next day to head back to the city where we'd have our ultrasound and stopped to visit my husband's parents and some of his sisters on the way.  We rarely get to see them since they live so far away, so it was nice to be able to visit with them.  The next morning, I was so nervous that I didn't want to eat breakfast, but I knew I needed to eat something, so I forced down some eggs and cereal as quickly as I could so we could find the doctor's office in time for our appointment.  We made it with just a few minutes to spare, but I still couldn't calm down until they called us back for the ultrasound.  I don't think I've been that nervous in a long time, mainly because everything I'd done to keep myself and therefore our baby healthy up to that point was at stake...I can't begin to explain the tension and helplessness I felt.  I had been praying every night for the baby's and my health, but I still couldn't help but be a little nervous thanks to all the "what ifs" that creep into your mind if you let them.

It turns out all of my worries were for nothing, because our little one was perfectly normal and developing as expected!  After that was out of the way, I was on pins and needles wondering if our baby was a he or a she...I had been convinced throughout my whole pregnancy that I had to be carrying a boy, not due to any evidence but a feeling.  As it turns out, my intuition in this case was totally and completely wrong, because the ultrasound technician told us she was thinking we were having a girl, even though the cord was wrapped between the legs and she couldn't be completely sure.  She scanned a few more important areas then came back to double-check, and sure enough, it was definitely a girl!  I almost couldn't believe it at first, but I was definitely pleasantly surprised.  I always secretly wanted a girl, but wouldn't let myself dwell on it for fear that we wouldn't have one.  It's not that I would have been disappointed had we been having a boy; it's just that I'm so girly that I wanted a little girl to dress up and play Barbies (and John Deere tractors!) with.

I wrote a couple of months ago about how much the gender issue bothered me, not because we necessarily cared much one way or the other, but because of people's comments about our baby in relation to my sister's.  Since she is 10 weeks ahead of me and having a girl, we had to deal with everyone telling us that "maybe we'd have a boy" so that (a) my parents would have one of each for grandchildren or (b) because there'd be less competition between us.  It's hard to know what to say when people make those remarks, and even harder when they ask what you're hoping for.  For that reason, I never told anyone aside from my mom that I really wanted a girl...I didn't want to have to eat my words later.  My husband never said which he'd rather have, but I think he's thrilled at the thought of having a daughter.  He always tells me to be sure and take care of his little girl, and wanted to go buy her a little single-shot pink rifle as soon as we found out what we were having...Ours will be the third girl in our group, which currently contains five little boys to run from!  In the first stages of pregnancy, my hubby thought that baby monitors were ridculously expensive, but just the other day when we were at Target, he was scoping them out and commenting on how "cool" the video monitors were!  It's so nice to see him taking an interest in everything, and I know he'll be an amazing (and protective!) dad.

Last but certainly not least, I got my latest A1C results back yesterday.  Before conception, I was able to bring my number down from 6.5% to 5.7%, which fell safely within the person without diabetes's normal range of 4.0-6.0% that they like you to shoot for pre-pregnancy.  With all the higher numbers I'd been dealing with lately, I was afraid my number may have gone up slightly, but I was just hoping that it would still be lower than 6.0%.  When I got home yesterday and nearly ran to the mailbox, I ripped open the envelope with my test results and was shocked to see that my A1C was 4.9%!  I almost couldn't believe it, and had to read it a couple of times for it to sink in.  With all the challenges I've had to deal with and hard work I've put into managing this disease, it's so nice to see positive results.  In a way, it validates everything I've been doing and re-affirms my confidence in my ability to manage this difficult disease.  Most of all, it reassures me that I am doing everything I can to ensure my child's health and well being, which is the most important end result for me.

Friday, September 2, 2011

The Great Vaccine Debate

I decided yesterday that it was time for a change, so I revised the design of my blog and even got a new profile picture to match-and it actually looks kind of like me, so I thought that was pretty cool!  Every time I decide to embark on a blog makeover, I end up all tense with achy-shoulders from trying so hard to find the right html code to change in order to get the look I want, because the templates rarely work 100% for me.  Anyway, I somehow managed to get it decent-looking, so now I can finally relax!

I had another OB appointment on Tuesday, mainly to do the blood work for the quad screen prenatal testing that we decided to go ahead with.  Long before I was pregnant, I was undecided on the issue of finding out the risk level of having a child with a genetic defect or disorder (like Down's Syndrome or Trisomy 18), but since then I came to the conclusion that IF there was something wrong with our child, I would want to know before birth so I could be prepared for the challenges we'd have to face and get somewhat more mentally/emotionally adjusted to the fact, if that's possible.  A big needle stick (like I'm not used to that...), and 10 days later we should have our results.  They said no news is good news, so that's what I'm hoping for!

Prenatal testing, as I've discovered, is just one of the many difficult parenting decisions you have to make before your child is even born.  From breast/bottle feeding to the circumcision issue for little boys and even pacifier use (or not), there is plenty of controversy surrounding all of these choices.  People on both sides of every issue are passionate about their position, and few are willing to modify their ideas.  None of these debates, however, is quite so polarizing as the issue of vaccines.

Every time I come across an interesting article on vaccines, I post it to Facebook.  I am absolutely pro-vaccine, and passionately so...therefore, whenever I encounter these articles online, I opt to share it with my friends because I think everyone should have the best information possible to base parenting decisions on.  The first was an article about pediatricians who refer kids that aren't vaccinated to other physicians--as the article says, "no shots, no service."  The American Academy of Pediatrics stated that by instating policies like this, these pediatricians might be preventing unvaccinated children from receiving proper health care.  The bigger issue in my eyes, though, is that these children aren't being vaccinated in the first place-is that not considered "proper health care" too?  After all, babies can't decide whether or not they receive vaccines; it's the parent's choice.  And with so many rampant rumors and misinformation on vaccines, more and more parents are making the decision to not vaccinate their children or to delay their shots based on invalid information and anecdotal evidence from parents who claim that their children were injured by vaccines.  The thing that saddens me most is that these children aren't receiving the recommended health care because their parents either do not have access to accurate information, or simply choose to believe that the vaccine schedule is part of a big government/pharmaceutical conspiracy.  What they fail to realize, though, is that vaccines offer very little profit for the manufacturers (especially compared to other pharmaceutical drugs), and that the government has little to gain from children being vaccinated other than an assurance that the threat of disease outbreaks in the country is reduced.  I am not saying that politics do not influence medical issues and vice versa; I am just saying that given the current situation, I do not believe the vaccine conspiracy theory that anti-vaccine advocates are so quick to force.

In all honesty, I think that vaccines should be required by law in all children who aren't allergic to them or have compromised immunity for whatever reason.  The reason I believe this is very simple: the more children who aren't vaccinated, the greater the threat to herd immunity.  The second article I posted regarding vaccines on Facebook was a story about a little boy with leukemia who could not be sent to day care because his parents could not find one in which all of the children had been vaccinated.  The reason this was of such great importance was because this little boy, whose immune system was compromised due to chemotherapy, could not receive vaccines during his treatment--therefore, he (like many others, including young infants and other immunocompromised individuals) relies on herd immunity to protect him from the diseases that vaccines would ordinarily offer protection against.  The problem that scientists and doctors are seeing, though, is that in communities where so many parents are making the choice to not vaccinate their children, herd immunity is compromised so much that diseases that were once thought to be basically eliminated from the modern world are gaining a foothold once again.  As a result, children (both those who are too young or cannot receive vaccinations due to compromised immunity and those whose parents choose not to vaccinate them) are dying of preventable diseases.

Regardless of your views on vaccines, you only have to look at recent news stories to know that this is true.  Last year, the pertussis outbreaks in several states were devastating.  The numbers of children affected by the disease were disproportionately higher than previous years, and many investigators believe that it is at least partially due to the anti-vaccine movement.  It's pretty simple, really: the more unvaccinated children in a given population, the lower the percentage of vaccinated individuals; the lower the level of herd immunity, the greater the chance of disease outbreak.  What scares me the most about this is that the diseases that are emerging in epidemic proportions again are so threatening to babies who are too young to receive the vaccines that would protect them.  The first shot for pertussis, for example, isn't given until 2 months as part of the DTaP vaccine.  Before then, babies are vulnerable to the disease, which can kill an infant in a very short amount of time.

What I've encountered in posting these articles is that anti-vaccine proponents are quick to say, "Well if vaccines do such a great job of protecting your child, you shouldn't be worried about my unimmunized child making them sick."  No matter how often I get this reaction (and it happens surprisingly frequently), it still frustrates me to no end.  First of all, who are you to tell me that I shouldn't be worried about my child's health?  Of course I'm going to worry about my little one getting sick, and I absolutely worry about them being exposed to unvaccinated children for this very reason.  Secondly, if you know ANYTHING about vaccines, you know that they aren't all given on day until they're given the vaccination for a particular disease (which may be months down the road), they're vulnerable to it--it really is that simple and obvious.  The more I've thought about it, the more I realize that this reaction is just part of anti-vaccine advocates' self-affirmation toolkit--the more that they can convince themselves that their children aren't going to be infected with and/or spread diseases, the more they believe they're making the right decision in not vaccinating them. 

I've also found that anti-vaccine supporters tend to surround themselves with people who think the same way they do.  My husband was raised Mennonite, and although he received all of his vaccines and believes the same way I do, there are a lot of people within that group who are part of the anti-vaccine movement due to all the popular horror stories and rumors of vaccine injury.  As Seth Mnookin points out in his book "The Panic Virus", being around other people who support your way of thinking seems to validate your decision: "[...]sustained encounters with a small group of like-minded people almost inevitably lead to the conclusion that everyone thinks the way you do." (pg. 141, Nook version)  Never mind that 90-95% of the population in almost any given area of the country vaccinate their children; being around other anti-vaccine advocates (who are part of the other 5-10%, mind you) confirms that you're making the "right" decision, even if it goes against what the majority of the general public does.  I'm not saying that the majority way is always the right way; it's simply that on this particular health issue, it's logical to assume that if virtually everyone else is vaccinating their children without ill effect, you can be reasonably confident that your child is not going to suffer any adverse reaction from being vaccinated as well.  In fact, the chance of contracting one of the vaccine-preventable diseases is about 20 times greater than being injured in any way from the vaccine.  To further break those numbers down, if the risk of being infected with disease X is 1 in 1,000, the risk of having any ill effects from the X vaccine would be 1 in 20,000.  Furthermore, the transmission rate of most of these diseases is anywhere from 80-100%, so that gives you a 0-20% chance of NOT contracting the disease if you're not vaccinated against it.  Given those odds, I don't see how anyone would willingly not vaccinate their children without a valid medical reason.

Anti-vaxers also like to make the argument that if their child is sick, they're not going to expose them to others.  However, this is a simple statement to refute as well.  Many of these vaccine-preventable diseases have incubation times that are such that you could go days or weeks without realizing your child has been infected before they start to have obvious symptoms.  Pertussis, for example, first appears as a normal cough/cold before turning into full-blown whooping cough.  What parent keeps their child home from school (or any public place) every time they have a simple cough or cold?  I'd wager that it's not many. 

I've had this debate several times on Facebook, and one person even asked me point blank what the chance was of their unimmunized child giving a vaccinated child one of these diseases.  Never mind that the point of the article at hand (the one about the boy with cancer) was the danger posed to children who couldn't be vaccinated (yet), or that the occasional immunized child who for whatever reason does not get full protection from the vaccine(s) they receive also relies on herd immunity; this is what I replied:
[...]Therefore, the disease transmission rates (percentage of susceptible individuals who will become infected by an infected individual, where the susceptible individual is a person with a compromised immune system or one who has yet to receive the vaccine due to being too young) vary based on the particular disease. For pertussis, the transmission rate is 80%+. For measles, it's nearly 100%. This means that when a non-immunized child becomes infected with one of these diseases, the chance that they will infect a susceptible child they come into contact with is 80-100%.

As mentioned previously, there have been many recent cases in which a non-vaccinated child contracts a disease and in turn causes an outbreak. Most notably, there were 21 cases of measles outbreaks in Minnesota in April this year, of which 85% or more were linked to one unvaccinated child. In Utah, another child may have exposed up to 1,000 different people in two different events to the disease. The pertussis outbreaks last year have been linked to the large percentage of children who were nonimmunized, infecting infants who were too young to receive the vaccine and for whom the disease is often fatal. So clearly, it's a very real issue, especially when it comes to the recent epidemics of vaccine-preventable diseases in the U.S.
I also linked to two more articles (here and here) about how recent disease outbreaks have been linked to the anti-vaccine movement and how it is fast becoming a social health issue.  Never mind that the original "study" linking vaccines to autism, conducted by Andrew Wakefield in 1998, has been found to be fraudulent (and, in fact, clearly should have never been published if you read chapters eight and nine of Seth Mnookin's "The Panic Virus") and completely baseless, emerging from his illogical connection between the measles part of the MMR vaccine and bowel disease (yes, bowel disease), leading ultimately to autism.  Even after hearing about the Wakefield study being invalidated, I never realized the full ridiculousness of his claims until reading Mnookin's book.  No matter how crazy and unfounded, however, it is easy to see how claims like Wakefield's can so quickly influence the public's perception and how difficult it can be to undo the damage once it is done.  The media loves a good public health scare, and articles confirming vaccine safety aren't as newsworthy or attention-provoking.  Therefore, once the public is sufficiently enraged over a perceived issue, the retraction or correction barely registers in the collective psyche.

More recently, a review of the current literature on vaccines was completed by the Institute of Medicine (a division of the National Academy of Sciences) and confirmed that vaccines are generally safe.  Before anti-vaccine advocates can shout bias or conspiracy, it is important to point out that this study is unique because it reviewed over 1,000 existing studies on vaccines.  So unless thousands of scientists are publishing falsified research in legitimate, peer-reviewed journals (unlike the some other "scientific" publications, which will admittedly publish any article, even those that appear to be questionable at the onset), it would be hard to refute these findings.  On a Facebook page for Pregnancy and Newborn Magazine, which posted a link to this article after I did, Organic Baby University commented on the link that "I would love in just one article or news piece from someone to provide the actual studies they used to determine no correlation. Never seen a link or attachment or anything to provide the public with the ability to read those studies that prove it. Just that they exist. As educators we would love to read the scientific studies!"  Another person and I both replied with the link to the bibliography from the study.  Perhaps after reviewing 1,000+ research articles, some anti-vaccine advocates will feel more comfortable with the conclusion that vaccines are, in fact, safe. However, there will always be those that dismiss any evidence in favor of vaccines as part of a conspiracy, even though this review was completed by an 18-member committee and included research by thousands of scientists!

That's the thing that has been the most striking about this debate for me--no matter what evidence you provide to anti-vaccine proponents, they would rather believe anecdotal "evidence" from people who have no medical background (not that I claim to have any medical training; I simply rely on facts from those who do to guide my decisions) over scientific fact.  Controlling for any potential biases, I just can't understand why anyone would believe that every single study confirming vaccine safety and neccessity is somehow "not real," or not to be trusted, or that peer-reviewed studies should not be used as a legitimate basis for decision-making.  Just last week, one of my closer friends (who does not vaccinate her child) deleted me as a friend on Facebook because she and her husband were offended by my posts on the subject.  She also took issue with the fact that my husband and I are choosing to not expose our baby (which will be born in February, the height of cold/flu/RSV season) to unvaccinated children until he/she can be immunized, because once again, she posed the question "If vaccines do what they say they do, why should you be concerned about our child?".  After I refuted this claim (again), I told her that my husband and I have every right to do what we feel is needed in order to protect our child.  I would rather take extra precautions to protect him/her and risk stepping on some toes rather than our little one getting sick when we could have prevented it.  I will choose protecting our baby over hurting someone's feelings any day, end of story.  I also told her that while I agreed that being a mom is a job that takes heart, I didn't see how my making educated decisions based on facts would make me any less of one.  I told her that if she chooses to believe other things over scientific fact, that's her decision-but it certainly isn't mine, and never will be. I simply could not make a decision about my child's health that goes against everything I know, simple as that.

I know that all of these people who choose not to vaccinate their children do so out of legitimate concern for their child's wellbeing and feel that they're doing what is best for their children, but it saddens me to know that they do so without accurate information to base their decisions on.  I believe that parenting decisions should be left to the parents until those choices affect my child's wellbeing-or theirs.  There is a reason why you can't get a religious or philisophical exemption for drunk driving or illegal drug use-it's an issue of public health and safety...The thing is, I don't know how many more children are going to have to die from preventable diseases until something is done about the issue.

Tuesday, August 23, 2011

It's Diaversary Time...

Today marks a very important day for me: it's been a year since I was diagnosed with diabetes.  In a way, I can't believe it's been a whole year; on the other hand, it seems like it's been forever already.  It blows my mind that there are people who have been living with this disease for 50 years or more, and I definitely, definitely hope that I'll be one of those people 50 years from now.

I saw something on Facebook the other day that a friend had posted that said:
It's hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (COPD, Anxiety, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, Crohn's, MS, Arthritis, Cancer, Heart Disease, etc.) Never judge what you don't understand...
It's so true.  Those of us with diabetes have to deal with the (largely invisible) battle of highs and lows, and I have countless relatives & friends who live with other illnesses that few people can truly relate to.  Living with a chronic disease is tough-physically, mentally, and emotionally.  Even if it's not something that you have to deal with on a minute-by-minute or hourly basis (although that can certainly be the case with diabetes), it's always something that is in the back of your mind.  It adds an entirely new dimension to your life, and puts everything in a different perspective.  Once you are diagnosed with a lifelong disease, everything else pales in comparison.  Things that used to matter just don't anymore.  Relationships take on a new meaning, and you learn how to depend more fully on other people-and yourself.  "You never know how strong you are until being strong is the only choice you have."  Like I said in my six-month post, though, sometimes I don't want to be strong...I'd rather just be normal!

That's not to say that you can find that new found inner strength every day, though...there are plenty of days when the challenges of living with a chronic disease weigh so heavily on you that's it's just too hard-and sometimes impossible-to keep a positive attitude.  There are days when you just don't want to do it anymore, when you're sick of having the stare-downs with your plate trying to count carbs, dealing with insulin dosages, the highs and lows, and constantly checking your blood sugar, that you fantasize about what it would be like to have a working pancreas.  I've been through a lot of those days, and luckily I have a husband who is very supportive-but who also reminds me of reality when I need to hear it.  No matter how much I want to have a working pancreas, I don' I just have to deal with it.

It seems like a lot of what I've learned about diabetes revolves around "dealing with it."  How to deal with out-of-range numbers, diet modifications, basal/bolus rate changes on an insulin pump, taking care of your overall health...and with all that to think about, "dealing with it" can easily become overwhelming.  It is doable, though--something that those people who have lived through 50 years of slowly-improving diabetes technology are a true testament to.  One thing I've always been thankful for is that I was diagnosed at a time when there is so much technology available to make living with this disease a little easier.  I started out with just a blood glucose meter, then added oral medication, switched to the insulin pen, and now have a meter that communicates wirelessly with my insulin pump, which also doubles as a Continuous Glucose Monitor (CGM) when I wear the sensor with it.  That's not to say that today's technology is perfect, though--there are plenty of improvements that could be made in order to fine-tune what is available.  There are always news stories about the latest & greatest in diabetes technology, and rumors about what is to come.  I think the closed-loop pump/CGM system probably isn't far away from being a reality, but that's still a far cry from a working pancreas.

Another thing I've realized in the past year is just how misinformed people are about diabetes in general, and about type 1 especially.  I wrote a post in January about an exchange I had with a woman on another blog site about diabetes and it "going away", and it just showed me how little people know about the disease and yet are so willing to give "advice" and impress their "knowledge" upon you.  I even had a lady tell me once that weight loss surgery "cured" diabetes...Being of normal weight, I was thinking, Lady, if I had weight loss surgery I'd be nonexistent!  But some people just don't "get it," and some aren't even worth the trouble of trying to explain everything to.  I try to be patient and educate everyone I can, but some people just aren't worth the effort it takes because they are so set in their old-fashioned way of thinking.

Some people that definitely do "get it," though, are the members of the DOC-the Diabetes Online Community.  Without their stories, advice, and support-from-afar, I wouldn't have made it through this year as easily as I did.  Even though they may be miles away, knowing that there is someone out there who has gone through exactly what you're dealing with makes it a little easier to cope with.  One of the major things I worried about when I was diagnosed was my ability to have a healthy pregnancy and baby, and the DOC provided tons of answers and encouragement on the subject.  Thanks to them, I realized it was definitely possible to have a relatively normal pregnancy and happy, healthy baby in the end as long as you're willing to put in the effort it takes to effectively manage your disease before and during pregnancy.  It isn't easy, but it's doable-and so worth it.

Another thing I've learned from this disease is that sometimes, you just have to go with the flow.  There are going to be good days and not-so-great ones, and I finally learned that you just have to accept that.  Highs are part of the disease, so you just have to expect them, correct them, and move on.  It was incredibly hard for me in the beginning to see those numbers as information and not a "grade," but I've grown into a more balanced view of them over time.  It's still hard, though, especially when you know there's a tiny little human being inside you that is depending on your health to stay healthy...The highs are more emotionally tough than anything then. 

When you're diagnosed with a chronic disease of any kind, I really think you go through the typical stages of grief (Denial, Anger, Bargaining, Depression, and Acceptance) over the loss of your former, healthy self, though it's not to say that you don't drift back and forth between stages at any given point in time.  Depending on the day, you may want to deny that you have to give your disease any attention at all, or you may be mad at the universe because you're one of the unlucky ones who ended up with it.  You may tell yourself (or God) that you would trade XYZ to be able to go back to your normal, healthy self, and other days you're just down in the dumps just because dealing with everything becomes so difficult to handle.  Then, on the good days, usually when you have a handle on things and are feeling confident in yourself and your life, you accept your disease as a part of who you are, though never as a definition of yourself.

It's incredibly hard to not let a chronic illness take over your life.  Achieving a balance between managing and not is tough.  You have to have just enough control over it so that it doesn't control you, but not so much that it's all your life revolves around.  It's not an easy thing, especially when your disease places so many limitations on what you can and can't do.  I wrote not long ago about how diabetes disrupts my life, because as much as I try not to let it prevent me from doing anything, realistically, it sometimes does.  Anything that involves water is pretty much out of the question for the time being, because although I could switch back to shots for a day at the water park, I just don't want to risk the loss of control during a time when control is essential.  It puts a damper on our plans with friends, and even my vacation plans with my husband, because being on a (non-waterproof) insulin pump prevents me from doing a lot of things, and pregnancy limits me further.  It's just the way it has to be, but that doesn't mean it doesn't majorly suck.  I hate that my disease prevents my husband from being able to the things he wants to do, and I resent the fact that we're not able to participate in a lot of the things our friends plan because of it.  Even though being on the pump means giving up some of my freedom, though, I still wouldn't trade it for shots simply due to the level of control it gives me.

So, if there's one thing I've learned over the past year, it's this:  Life with diabetes, like any other chronic disease, isn't always easy...but it's manageable.  There are things that just plain suck, but as long as you're dealing with them in a way that allows you to control your disease without it controlling your life, that's a win in my eyes.  You're never going to have perfect numbers, and there are certain modifications that you have to make to your life in order to take care of your overall health, but once you have things (sort of) under control, your life becomes more normal(ish).  This disease might sometimes limit the things you can do or eat, but it never has to prevent you from accomplishing the things you want to do in life.  And in order to manage everything in the most effective way possible, you have to find a source of motivation to keep you going-especially on those days you want to quit.  Diabetes doesn't take a vacation, so you can't either...but as long as you have something to keep you motivated to stay healthy (mine is my future children), everything you do and all the effort you put in has a greater purpose.  That motivation is what makes all the pain and suffering worth's what makes life worth living.