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!