This weekend, we went to my family's annual reunion, which is held about 80 miles away from where we live. We had a great time catching up with everyone, even though it passed by too quickly! My husband suggested we should get together twice a year instead of just once, which is an amazing statement to make of your in-laws =)
One thing that wasn't so much fun, though, was having the worst low I've ever experienced since my diagnosis. I don't know what it is about short weekends away and alcohol, but I tend to forget about the effect it has on my blood sugar. Back in April when we traveled a couple of hours for the annual benefit gala for the local branch of the JDRF, I uncharacteristically indulged in a couple of glasses of wine, only to find myself battling a low in the middle of the night that I was luckily able to fix with a granola bar and some of my husband's sweet tea. This time, it was two beers...normally, I only have one-if I even drink at all. Sometimes, depending on the source of alcohol, it even raises my blood sugar and I end up with a high to deal with.
Saturday night, though, all the factors that influence blood sugar must have come together and conspired against me (and any hope of sleeping), because when I went to bed, I was at 125. Luckily, I didn't give myself the correction I considered...sometimes if I'm in that range before bed, I wake up around 100 when I'd rather be closer to 80. Yes, I'm a perfectionist. Anyway, the baby and I went to bed and slept fine until my husband came in a couple of hours later after staying to visit a little longer with my family. When I woke up then, I knew I was low, so I got up to check my BS. It was in the low 40s, so I grabbed the granola bar I keep in my purse for such occasions and ate it. 15 minutes later, I was still in the 40s, so I added 16mg of glucose tablets to the mix. 15 minutes later, I was just over 50, and had no more sugar left in the hotel room. I knew I could call my parents to steal a snack from them (even though it was around 3:00 in the morning), but at that point I realized my BS wasn't coming up as quickly as it normally does, and that I better do something to ensure I would wake up in the morning. I've never had to use glucagon before, but I remembered reading a post over at Typical Type 1 in which Jacquie recounts her night with a little too much alcohol and having to resort to the dreaded emergency injection.
Figuring my only option at that point consisted of that little red box, I told my husband what I was going to do so he would watch out for me while I got everything ready. I knew theoretically how to use it (and the pictures are pretty self-explanatory), but I did a cursory glance of the instructions just to be on the safe side. Possible vomiting, nausea for up to 12 hours afterwards...perfect. But I figured that didn't compare to the mounting fear of a life-threatening low I was currently experiencing, so that was that. I mixed up the vial, drew it up, and injected it into my thigh. I waited around, re-read Jacquie's post about her glucagon experience on my iPhone, then noticed in the comments section something about it not working as well with alcohol in your system. Great. But since it worked for Jacquie, I hoped it would do the job. When I checked my BS a little while later, I was at 78, then high-80s, then around 115. At that point, I felt comfortable enough with the fact that it was working to get some rest, but I set my alarm for an hour later to be on the safe side...I guess it goes without saying that I had a zero-basal rate set through all of this. When I woke up when my alarm went of an entirely too short of a time later, I was hovering in the 180s. A couple of hours later, I peaked at 196, and since I was going to have to get up an hour after that, I went ahead and started correcting the high. When I woke up (an hour later than I'd originally planned) I was back down to 156, and with another small correction I returned to 91 before breakfast. At least I never had any nausea or vomiting, and I didn't feel too bad following the injection.
After eating breakfast, though, I quickly noticed that my blood sugar wasn't rising like it should from the food, so I set another zero-basal and took a couple of glucose tablets to be on the safe side. At the post-prandial check, I was around 80, so I had a feeling I'd be battling a low for the rest of the day-and I was right. At lunchtime on the way home, I thought I under-shot my insulin enough to stay in the black, but that postprandial was pretty much the same as before...and ditto with supper.
I don't know what's going on with my body, but apparently I'm becoming more insulin sensitive, at least over the past couple of days anyway. I know that the Saturday night low was due to the alcohol, but I'm not sure why I've had trouble keeping my BS up long after the effects of the alcohol should have worn off. I also know it's not from weight change, because if anything I've gained a couple of pounds from the stress of working with a baby. Also, I've only had these consistent lows over the past few days...before that, my numbers were in the normal or slightly-higher-than-normal range. I've been checking my blood sugar even more often since then, just to be on the safe side and keep a good eye on them. The pump has been extremely useful throughout all of this too, because I always have the zero-basal rate option to use.
Bottom line, I'm extremely glad I had the glucagon with me, because I don't know what I'd have done without it. That moment is the reason I always carry one in my purse, because I always have it close by then. I went to the pharmacy yesterday and had my prescription refilled because I didnt want to tempt fate and be without it!
More than anything, this experience has shaken me to the core. It's the scariest d-related incident I've had since my diagnosis and one I hope I don't have to deal with again anytime soon. I'm terrified of what this disease is capable of, both from highs and lows. At least the highs don't put you in immediate danger, though, and they don't leave you shaken and fearful like a bad low does.
I got a jogging stroller so I can start running again in hopes of losing the baby weight, but the prospect of a low like this one happening again makes me realize how important the safety precautions for exercising while on insulin really are as well. I can't risk being unavailable, temporarily or permanently, to my daughter. It's incredibly frustrating, though, to want to lose weight so badly only to have so many d-related obstacles in the way. Lows require more sugar and prevent me from exercising, but at the same time, I feel like I need to be at my ideal weight again in order to be as healthy ad possible. At the same time, I'm not comfortable with allowing my blood sugars to run much higher than normal either. It's such a tough balancing act, and at this point I suppose all I can do is my best, and make sure to follow the insulin safety guidelines to a T.
All I know is that I hope I don't have to use that red box again anytime soon, but I'm extremely grateful to Jacquie and the rest of the DOC for sharing their stories. It's in moments like these when we'd be truly lost without having each other to relate to, someone else out there who's been through the same things-even if they're on the other side of the country! I mentioned in my last post that I started this blog mainly to deal with everything that comes with a T1 diagnosis, but I can only hope that I might also be able to help someone else through sharing my experiences as other DOC members have done for me!
Tuesday, June 12, 2012
Friday, June 8, 2012
Making Your (Diabetes) Life Better
Back in November, I got an email from a person in marketing at Random House about Chuck Eichten's "The Book of Better: Life With Diabetes Can't Be Perfect. Make It Better." He said he'd like to send me a review copy to check out in hopes of getting the word out about it in the diabetes community after coming across my blog. Needless to say, I was thrilled...Not only do I LOVE books; I also love learning more about how I can make living with this disease a little easier. I was also amazed and honored to know there are actually people out there reading what I write! When I started this blog in November 2010 (a couple of short months after my diagnosis), I did so for some much-needed catharsis...I just wanted to let it all out, regardless of if anyone ended up reading it or not. I figured that if they did, maybe I could help someone else as other d-bloggers have helped me, because it always helps to know that you're not alone in dealing with everything that comes with T1.
Anyway, I promised him I'd read the book as soon as possible, but that since I was pregnant with our first child and dealing with the whole diabetes + pregnancy whirlwind, it would probably be a while before I'd be able to. Fast-forward seven months later, and I was finally able to finish it! It was a fast, easy read; it just took a while to get through it reading it in five-minute chunks while the baby slept (which wasn't very often in the first couple of months!).
The thing that stands out the most about this book is its approach to diabetes. Most books on the subject come off as very clinical--they're straightforward and informative, but dry and impersonal. This book is neither of those things, but still manages to be direct and educational. Not only that; it's filled with funny cartoons, charts, and interesting text, so it easily keeps your attention. Its tone is conversational, so it feels like Mr. Eichten (who has lived with T1 for over 35 years) is standing face-to-face with you, telling you about the ups and downs he's experienced firsthand with the disease. He somehow simultaneously remains nonjudgmental and still holds you accountable for managing your illness, which makes you take him seriously...and since he's been through it all, it's easy to take his advice.
This book covers almost every aspect of diabetes, from its most basic facts to dealing with its toll (physical, mental, and emotional) on your everyday life. At 288 pages, it's much shorter than most other books on the subject while still managing to be fairly comprehensive in its breadth. Each of the 12 chapters deals with a specific aspect of diabetes management, from diet and exercise to treatment options. Eichten makes it no secret that he believes the insulin pump is the superior choice for managing T1 and for some T2s, which I like. It would be very hard to argue that the pump is not the best, most technologically advanced option for dealing with this disease for the people who fit the bill for using it (because let's face it, some people just aren't cut out for dealing with a pump).
On first read, I was more than a little irritated by Eichten's portrayal of T2 as something that can "go away" (see lengthy discussion on that here); however, when I read over it again, I realized he said that through losing weight, you can make the symptoms of T2 go away. Important distinction there, because as many of us have discussed over and over again in the d-community, there is no cure for diabetes, no matter which type you're talking about. We all have to answer to the general public so often when they inform us of the "new miracle cure(s)" they heard of for diabetes, so anything that remotely reads as reference to "weight loss as a diabetes cure" immediately puts me on edge. Maybe it's because of the time that I had a stranger tell me at a restaurant that "they've found a cure for that"...the "cure" she was referring to? Gastric bypass surgery. Yes, despite the fact that I was already at a healthy weight, gastric bypass would make my diabetes go away. It's so hard to explain to people that no, that won't make my pancreas function; that they're probably referring to Type 2, in which case it's still not "cured"...in my eyes at least, symptom-free (for the present at least) does not equal "cured." It may be a battle of semantics, but it's important to me. Why? Because the impression that there's already a cure out there hurts diabetes research funding that could lead to a real cure!
That little glitch aside (and really, I'm not sure I can even call it a glitch since I misread it), I think this book is pretty great, if for no other reason than the fact that it motivates you to shoot for better-not perfection. Often, we feel like other people (doctors, family, friends, etc.) expect perfection from us when it comes to managing our disease...or if you're like me, that pressure can also come from yourself. When we try to hold ourselves to such an impossible standard and inevitably end up falling short, it's hard to stay motivated to keep trying...and often, we end up throwing in the towel completely after trying so hard (and failing) to be perfect. If instead we just try to better ourselves-by any amount-we can benefit from a sense of accomplishment that leads us to keep striving for better. It's hard to see how anything bad could come from this approach, especially because it's one that sets you up for sure success instead of the inevitable failure of expecting perfection from yourself!
Bottom line, I love the message of this book. I can see it being extremely helpful for anyone who is in a D-rut, lacking motivation to manage their disease effectively. As the marketing person who sent me the book said, there's something in it for everyone-T1, T2; young, old; newly diagnosed or someone who has lived with the disease for decades. I'd recommend it to anyone as a quick, easy read that's entertaining in spite of being about a disease that's not funny in the least!
Anyway, I promised him I'd read the book as soon as possible, but that since I was pregnant with our first child and dealing with the whole diabetes + pregnancy whirlwind, it would probably be a while before I'd be able to. Fast-forward seven months later, and I was finally able to finish it! It was a fast, easy read; it just took a while to get through it reading it in five-minute chunks while the baby slept (which wasn't very often in the first couple of months!).
The thing that stands out the most about this book is its approach to diabetes. Most books on the subject come off as very clinical--they're straightforward and informative, but dry and impersonal. This book is neither of those things, but still manages to be direct and educational. Not only that; it's filled with funny cartoons, charts, and interesting text, so it easily keeps your attention. Its tone is conversational, so it feels like Mr. Eichten (who has lived with T1 for over 35 years) is standing face-to-face with you, telling you about the ups and downs he's experienced firsthand with the disease. He somehow simultaneously remains nonjudgmental and still holds you accountable for managing your illness, which makes you take him seriously...and since he's been through it all, it's easy to take his advice.
This book covers almost every aspect of diabetes, from its most basic facts to dealing with its toll (physical, mental, and emotional) on your everyday life. At 288 pages, it's much shorter than most other books on the subject while still managing to be fairly comprehensive in its breadth. Each of the 12 chapters deals with a specific aspect of diabetes management, from diet and exercise to treatment options. Eichten makes it no secret that he believes the insulin pump is the superior choice for managing T1 and for some T2s, which I like. It would be very hard to argue that the pump is not the best, most technologically advanced option for dealing with this disease for the people who fit the bill for using it (because let's face it, some people just aren't cut out for dealing with a pump).
On first read, I was more than a little irritated by Eichten's portrayal of T2 as something that can "go away" (see lengthy discussion on that here); however, when I read over it again, I realized he said that through losing weight, you can make the symptoms of T2 go away. Important distinction there, because as many of us have discussed over and over again in the d-community, there is no cure for diabetes, no matter which type you're talking about. We all have to answer to the general public so often when they inform us of the "new miracle cure(s)" they heard of for diabetes, so anything that remotely reads as reference to "weight loss as a diabetes cure" immediately puts me on edge. Maybe it's because of the time that I had a stranger tell me at a restaurant that "they've found a cure for that"...the "cure" she was referring to? Gastric bypass surgery. Yes, despite the fact that I was already at a healthy weight, gastric bypass would make my diabetes go away. It's so hard to explain to people that no, that won't make my pancreas function; that they're probably referring to Type 2, in which case it's still not "cured"...in my eyes at least, symptom-free (for the present at least) does not equal "cured." It may be a battle of semantics, but it's important to me. Why? Because the impression that there's already a cure out there hurts diabetes research funding that could lead to a real cure!
That little glitch aside (and really, I'm not sure I can even call it a glitch since I misread it), I think this book is pretty great, if for no other reason than the fact that it motivates you to shoot for better-not perfection. Often, we feel like other people (doctors, family, friends, etc.) expect perfection from us when it comes to managing our disease...or if you're like me, that pressure can also come from yourself. When we try to hold ourselves to such an impossible standard and inevitably end up falling short, it's hard to stay motivated to keep trying...and often, we end up throwing in the towel completely after trying so hard (and failing) to be perfect. If instead we just try to better ourselves-by any amount-we can benefit from a sense of accomplishment that leads us to keep striving for better. It's hard to see how anything bad could come from this approach, especially because it's one that sets you up for sure success instead of the inevitable failure of expecting perfection from yourself!
Bottom line, I love the message of this book. I can see it being extremely helpful for anyone who is in a D-rut, lacking motivation to manage their disease effectively. As the marketing person who sent me the book said, there's something in it for everyone-T1, T2; young, old; newly diagnosed or someone who has lived with the disease for decades. I'd recommend it to anyone as a quick, easy read that's entertaining in spite of being about a disease that's not funny in the least!
Friday, May 11, 2012
2012 JDRF Gala & The Ever-Present D-Monster
April 21st was the annual Promise Benefit Gala for the local branch of the JDRF. The theme this year was "Lights, Camera, Take Action", which was Old Hollywood-inspiration at its best. More importantly than the theme, though, was the fact that we were able to raise over $280,000 for T1 research! It was an awesome experience for me, especially since this was my first big JDRF event to attend as a board member. The atmosphere in the room was truly amazing--you could just feel the passion and excitement everyone had for the mission to find a cure for T1! My parents' business sponsored a table for the night, and two of my dad's siblings attended with their significant others along with my parents, my husband and I, and our little one. I think we could have easily raised another several thousand had she been up for auction...I lost count of the people who asked! Despite our refusal to give our baby girl up for the cause, though, the night was a resounding success and raised a ton of awareness (in addition to funding) for T1.
In all seriousness, though, an awesome eight-year-old with T1 said it best in his speech before the Fund-a-Cure program: "I can't take another year of this!" That statement pretty much sums up everything everyone with T1 that I know feels about the need for a cure. I had tears in my eyes as this little boy told his story, because as bad as it sucks for me to have to deal with this disease, my heart breaks for the kids (and their parents) who are forced to do the same. When he talked about his dad checking his blood sugar in the middle of the night ("I don't even wake up!"), it really hit home for me how much it would hurt if my little one had to deal with this disease. I hate even having to clip her fingernails or put her in her car seat (because we're still dealing with a staunch aversion to it at this point), and I couldn't stop from crying when she got her two-month shots...I can't imagine having to poke her little heel or give her insulin injections on a regular basis, and that's the reality parents of children with T1 have to face 24/7. This disease is a constant (and very much unwanted) presence in my life, and I don't know how I'd be able to handle the worry that would come with my child being directly affected by it.
I've been thinking a lot lately about how my diabetes affects my family at this stage in our life...because as anyone knows, the person with T1 is definitely not the only one who has to deal with it! Every time I have a low, it's not just me and my husband or whoever that has to wait for it to pass; now, there's a sweet little baby girl that has to wait for me to find some sugar--usually when she's hungry and is screaming to be fed, thanks to the d-monster's sick sense of humor in timing. Every time that happens, I can't help but curse this stupid disease's existence. Most of the time, I look at my having T1 as an opportunity to be a part of a cause bigger than myself, because it gives me the chance to help someone else through my experiences; however, when it starts to interfere with caring for my child, the ugly reality of living with it becomes clear once again. It's not so much the day-to-day stuff that makes diabetes such a monster; it's the times it worms its way into your life, inevitably in the most inconvenient of moments that make you wish it would disappear the most. The lows never hit when you're surrounded by endless sources of sugar (because that's when you're most likely dealing with a high anyway); they surface with all the subtlety and forewarning of a shark attack, usually when you're in the middle of trying to grocery shop or when you're somewhere with nothing but an empty glucose tablet container to keep you company.
So there's the ugly truth...even though I try to use my having T1 as an opportunity to be a part of something bigger than myself and maybe even make a difference in someone's life as a result, I (just like everyone else affected by it) ultimately curse the day my pancreas decided to go MIA. I love being able to help out with the JDRF and meeting such amazing people as a result, but I'd much rather be celebrating a cure with them than our common tie being a monster of a disease. In the days and weeks since the gala, there have been a couple of local teens who have been hospitalized with T1 complications...a stark reminder of the reason we all work so hard to raise awareness and money for this cause. In the end, it's not about the organization or the money; it's about each and every person--child, teenager, or adult--who has to live with T1 24/7, 365. It's about every debilitating low and subtly damaging high. It's about every missed moment and opportunity that the d-monster robs us of. In the end, we're all here because we want so badly to find a cure that will make our lives a million times easier and infinitely better, and I feel truly blessed to know so many people who have made it their personal mission to not stop until it happens.
In all seriousness, though, an awesome eight-year-old with T1 said it best in his speech before the Fund-a-Cure program: "I can't take another year of this!" That statement pretty much sums up everything everyone with T1 that I know feels about the need for a cure. I had tears in my eyes as this little boy told his story, because as bad as it sucks for me to have to deal with this disease, my heart breaks for the kids (and their parents) who are forced to do the same. When he talked about his dad checking his blood sugar in the middle of the night ("I don't even wake up!"), it really hit home for me how much it would hurt if my little one had to deal with this disease. I hate even having to clip her fingernails or put her in her car seat (because we're still dealing with a staunch aversion to it at this point), and I couldn't stop from crying when she got her two-month shots...I can't imagine having to poke her little heel or give her insulin injections on a regular basis, and that's the reality parents of children with T1 have to face 24/7. This disease is a constant (and very much unwanted) presence in my life, and I don't know how I'd be able to handle the worry that would come with my child being directly affected by it.
I've been thinking a lot lately about how my diabetes affects my family at this stage in our life...because as anyone knows, the person with T1 is definitely not the only one who has to deal with it! Every time I have a low, it's not just me and my husband or whoever that has to wait for it to pass; now, there's a sweet little baby girl that has to wait for me to find some sugar--usually when she's hungry and is screaming to be fed, thanks to the d-monster's sick sense of humor in timing. Every time that happens, I can't help but curse this stupid disease's existence. Most of the time, I look at my having T1 as an opportunity to be a part of a cause bigger than myself, because it gives me the chance to help someone else through my experiences; however, when it starts to interfere with caring for my child, the ugly reality of living with it becomes clear once again. It's not so much the day-to-day stuff that makes diabetes such a monster; it's the times it worms its way into your life, inevitably in the most inconvenient of moments that make you wish it would disappear the most. The lows never hit when you're surrounded by endless sources of sugar (because that's when you're most likely dealing with a high anyway); they surface with all the subtlety and forewarning of a shark attack, usually when you're in the middle of trying to grocery shop or when you're somewhere with nothing but an empty glucose tablet container to keep you company.
So there's the ugly truth...even though I try to use my having T1 as an opportunity to be a part of something bigger than myself and maybe even make a difference in someone's life as a result, I (just like everyone else affected by it) ultimately curse the day my pancreas decided to go MIA. I love being able to help out with the JDRF and meeting such amazing people as a result, but I'd much rather be celebrating a cure with them than our common tie being a monster of a disease. In the days and weeks since the gala, there have been a couple of local teens who have been hospitalized with T1 complications...a stark reminder of the reason we all work so hard to raise awareness and money for this cause. In the end, it's not about the organization or the money; it's about each and every person--child, teenager, or adult--who has to live with T1 24/7, 365. It's about every debilitating low and subtly damaging high. It's about every missed moment and opportunity that the d-monster robs us of. In the end, we're all here because we want so badly to find a cure that will make our lives a million times easier and infinitely better, and I feel truly blessed to know so many people who have made it their personal mission to not stop until it happens.
Monday, April 16, 2012
Baby Girl, My Awesome CDE, & JDRF
I don't have much time to write today, but I wanted to post a quick update on everything going on! First off, Baby Girl is going to be three months old a week from tomorrow and I honestly can't believe it. It seems like the time has gone by so fast already! When we went for her two month checkup a few weeks ago, we found out she has reflux...which explains the extreme fussiness, poor sleep habits, lack of weight gain, and other symptoms over the first couple of months. Our pediatrician put her on Zantac and recommended we raise the head of her bed and thicken her supplementary formula with cereal, and it's seemed to make a pretty big difference. We just started the rice cereal last week, and now she's sleeping for MUCH longer stretches at night...needless to say, this mama couldn't be happier! In retrospect, I should have realized what all of her symptoms were pointing towards much earlier than I did, but like they say, hindsight is 20/20. I'm just glad we figured it out at six weeks instead of six months!
I mentioned in October last year that my CDE had nominated me to the board of directors for the local branch of the JDRF, so over the past several months I've been learning more about everything the JDRF does and trying to help out as much as I've been able to. It's really been awesome to see how dedicated everyone is to finding a cure and the support that the branch receives from the community. This weekend is the annual Promise Benefit Gala, which helps raise around $250,000 for the organization each year. I can't wait to be a part of it all, and I know it's going to be an amazing event! I attended my first board meeting a couple of weeks ago, and I was impressed by how involved everyone is and how much they do to support not only the JDRF, but the kids and families affected by T1. I've said it before, but I truly am honored to be able to be a part of such an awesome organization! In one of her last email updates, our Branch Manager said, “This
board can move mountains and they will be the ones that make the CURE
happen!” The more that I see how dedicated each and every person associated with this organization is, the more I believe she's right!
In d-news, my blood sugars have been a little more stable after a couple of tweaks to my basal/bolus rates. I've still had more highs than I'd like, but I would still much rather run slightly higher than to deal with low crashes--especially at night! After reading my last post, my CDE called to make sure I was okay because she was concerned about the lows I'd written about. I assured her that I had gotten everything straightened out and back under control, or at least as under control as T1 can be, I suppose! Thanks to her great teaching after I was diagnosed and general awesomeness thereafter, I can usually identify what changes need to be made or shoot her an email when I need extra help fixing things. She was the first person (other than my husband, of course) to know when I was pregnant, and the first person other than my husband or I to hold our baby girl...not to get all sentimental or anything, but I'm so glad to have such a great mentor to help me through the whole d-experience! If it weren't for her, I would have pretty much been left to deal with it all on my own since my endocrinologist has always been more comfortable with higher numbers and letting me manage everything myself...which is good in a way since it gives me a lot of independence, but bad in others. Anyway, I know that a lot of T1s aren't as lucky when it comes to the professional help they get, so I feel super blessed to have someone that knows their stuff and is a great friend too!
Friday, March 23, 2012
Low Places
As with everything else in my very type-A life, I began thinking about what my life as a parent with diabetes would be like long before I was even pregnant. True to my need-to-know-everything-about-anything-that-affects-me form, I read a book on the subject last year
(When You're a Parent With Diabetes: A Real Life Guide to Staying Healthy While Raising a Family by Kathryn Gregorio Palmer). It's a great book with tons of tips for managing your disease in the context of parenting, and I highly recommend it. Of course, no matter how much reading you do, nothing ever really prepares you for reality quite like...well, reality.
I knew theoretically that there would be times when my diabetes got in the way of parenting to the point that I'd sometimes have to put taking care of my disease before taking care of my child (the whole "putting on your own oxygen mask before trying to save your children" thing); however, I never imagined how bad this would actually suck in practice. Before when I had a low, even a bad one, it wasn't much cause for concern. I'd treat it, wait a bit, and go on with my life. Now, though, there's another little person who is completely dependent on me to think about. When I have a low, I have to drop what I'm doing with her to treat it, which usually means leaving her there to cry on her own for what in reality is only a minute or two but in my world seems like an eternity. Probably the suckiest time that this happens is when I've just sat down and have everything situated to feed her, only to have to leave our comfy home base (aka, the recliner) to find something with sugar as quickly as possible so she doesn't break into one of those gut-wrenching, inconsolably angry crying jags. Ordinarily, getting up from a chair wouldn't be a big deal; however, when you're (severely) sleep deprived and are trying your best to satisfy a crying baby, it's an entirely different story.
I've also been letting my numbers run slightly higher than normal, especially at night, because now the fear of the low you don't wake up from has an entirely new dimension. Our poor baby would undoubtedly go hungry until morning, because although the hubby helps me as much as he can when he's home, he just doesn't wake up at night. The first two nights in the hospital, he woke at her every cry...now, sometimes I think it'd take a freight train to wake him up! One of our first weeks at home, I remember having a pretty bad low during the night. I turned the lamp above our bed on and went to get some glucose tablets, then came back to our bedroom to wait it out. 15 minutes later, my blood sugar still hadn't risen much, so I grabbed some orange juice from the fridge in the kitchen and crossed my fingers. My blood sugar was back in the normal range after that, but I was hit with the realization that (a) my hubby (aka, the slumbering log in bed next to me) didn't even know I was up and (b) the baby wasn't going to be much help if I passed out.
Since then, I've made sure to keep a close eye on my numbers before bed, and set temporary basal rates if necessary to keep me hovering above 100. Of course, this inevitably leads to slightly higher numbers first thing in the morning; however, at this point I'd much rather run a bit higher on average than to risk the danger of a horrible low at night...there's just too much at stake now!
When I was pregnant, I had to keep a super close eye on my diabetes because it very directly affected the baby growing inside me. Thanks to the hormonal changes that come with pregnancy, it was very difficult to keep my numbers in a tight range. I figured it would be a lot easier after the baby was born, and in a way it is...because my hormones have returned to normal, I no longer have to take massive amounts of insulin to cover my carbs at meals, and my patterns are a lot more predictable. However, the fact that my baby is no longer directly affected by highs (but just as much by lows) makes me a lot more laid-back when it comes to my blood sugars than I was before. Don't be mistaken; highs still frustrate me and I'm still concerned with keeping my average in a reasonable range; but at this point, I'm more concerned with the lows than the highs. Once I get a better handle on the parenting thing, I know I'll return to my perfectionist style of diabetes management...for now, though, I'm okay with good enough.
(When You're a Parent With Diabetes: A Real Life Guide to Staying Healthy While Raising a Family by Kathryn Gregorio Palmer). It's a great book with tons of tips for managing your disease in the context of parenting, and I highly recommend it. Of course, no matter how much reading you do, nothing ever really prepares you for reality quite like...well, reality.
I knew theoretically that there would be times when my diabetes got in the way of parenting to the point that I'd sometimes have to put taking care of my disease before taking care of my child (the whole "putting on your own oxygen mask before trying to save your children" thing); however, I never imagined how bad this would actually suck in practice. Before when I had a low, even a bad one, it wasn't much cause for concern. I'd treat it, wait a bit, and go on with my life. Now, though, there's another little person who is completely dependent on me to think about. When I have a low, I have to drop what I'm doing with her to treat it, which usually means leaving her there to cry on her own for what in reality is only a minute or two but in my world seems like an eternity. Probably the suckiest time that this happens is when I've just sat down and have everything situated to feed her, only to have to leave our comfy home base (aka, the recliner) to find something with sugar as quickly as possible so she doesn't break into one of those gut-wrenching, inconsolably angry crying jags. Ordinarily, getting up from a chair wouldn't be a big deal; however, when you're (severely) sleep deprived and are trying your best to satisfy a crying baby, it's an entirely different story.
I've also been letting my numbers run slightly higher than normal, especially at night, because now the fear of the low you don't wake up from has an entirely new dimension. Our poor baby would undoubtedly go hungry until morning, because although the hubby helps me as much as he can when he's home, he just doesn't wake up at night. The first two nights in the hospital, he woke at her every cry...now, sometimes I think it'd take a freight train to wake him up! One of our first weeks at home, I remember having a pretty bad low during the night. I turned the lamp above our bed on and went to get some glucose tablets, then came back to our bedroom to wait it out. 15 minutes later, my blood sugar still hadn't risen much, so I grabbed some orange juice from the fridge in the kitchen and crossed my fingers. My blood sugar was back in the normal range after that, but I was hit with the realization that (a) my hubby (aka, the slumbering log in bed next to me) didn't even know I was up and (b) the baby wasn't going to be much help if I passed out.
Since then, I've made sure to keep a close eye on my numbers before bed, and set temporary basal rates if necessary to keep me hovering above 100. Of course, this inevitably leads to slightly higher numbers first thing in the morning; however, at this point I'd much rather run a bit higher on average than to risk the danger of a horrible low at night...there's just too much at stake now!
When I was pregnant, I had to keep a super close eye on my diabetes because it very directly affected the baby growing inside me. Thanks to the hormonal changes that come with pregnancy, it was very difficult to keep my numbers in a tight range. I figured it would be a lot easier after the baby was born, and in a way it is...because my hormones have returned to normal, I no longer have to take massive amounts of insulin to cover my carbs at meals, and my patterns are a lot more predictable. However, the fact that my baby is no longer directly affected by highs (but just as much by lows) makes me a lot more laid-back when it comes to my blood sugars than I was before. Don't be mistaken; highs still frustrate me and I'm still concerned with keeping my average in a reasonable range; but at this point, I'm more concerned with the lows than the highs. Once I get a better handle on the parenting thing, I know I'll return to my perfectionist style of diabetes management...for now, though, I'm okay with good enough.
Thursday, March 8, 2012
Baby Love
Yesterday was the last official day of my maternity leave...and I honestly can't believe six weeks went by so fast. I know everyone says that once you have a baby they grow up in the blink of an eye, but I've found out that (like many other things, a la the accompanying lack of sleep) you really can't understand this phenomenon until you have one of your own.
Six weeks ago, our lives changed. Six weeks ago, we brought home a precious baby girl that still seemed like somewhat of a stranger to us (but whom we've since come to understand a little better, thankfully!). In the time since, I've grown as a person. I've learned what it truly means to be selfless as I've spent countless hours in a sleepless delirium trying to please a screaming baby, often to no avail. I've come to understand a different kind of love, one in which the prospect of this tiny person being hurt, sick, or just unhappy brings a sinking feeling to my chest. I've learned that good enough is, in fact, good enough when it comes to many things that I was a perfectionist about in the past. Not only is it very difficult to get much accomplished when you're at the mercy of a newborn's crazy "schedule;" it's also incredibly easy to pass the hours and days entirely just holding her in my arms.
Then there's the sheer awesomeness of watching her grow and change before our very eyes...My husband was quickly amazed by the fact that such a tiny little girl could be so strong, and I love to take pictures of her (sometimes several a day) and look back to see how different she looks a short time later. Around her one month "birthday," she started smiling...#ohmygoodness! Her adorable toothless grins never cease to put a smile on my face, even if it is just while she's carrying on one of her "conversations" with the ceiling fan! Last night, I had finally managed to calm her down after she'd been crying when she sighed dramatically. I mimicked her, and got a huge smile in return! It's true when they say that you'll do anything you can to get those priceless grins =)
She's also starting to interact more with the world around her. There is a canopy on her Pack 'N Play that has giraffes hanging from it, and the other day while I was getting ready in the bathroom a short distance away, I could hear her cooing at them...and now they're within arm's reach! I also finally ordered the Skip Hop activity gym I'd been wanting to get for her--it's a little pricey, but it's much cuter than any of the others I've seen. The first time I laid her on it after it came in, I propped her up on her tummy on the miniature Boppy-style pillow it comes with so she could look at herself in the mirror, and I was amazed at how much head control she has! It didn't take long for her to topple over the front of it, though, because her little legs never stop moving...if I lay her on my stomach, she quickly ends up by my face/shoulder as the result of her pushing off with them. Of course, I knew when I was pregnant with her that she was going to be a little wiggle worm...she never stopped moving! I didn't even bother doing the prescribed "kick counts" at the end because she moved so much...in that way, she's definitely her daddy's child!
To shift gears a little, I was reading a post on SixUntilMe the other day about Kerri checking her daughter's blood sugar and the fear that comes with being a parent with T1. As Kerri says, it's a thought that creeps up on you, either during (or before) pregnancy or when a harmless symptom (such as a wetter-than-normal diaper or an extra-thirsty baby) pops up later on: the big "What if?". As a PWD, we're very familiar with the subtle symptoms that accompany this disease, and sometimes we're a little over-vigilant when we see them in those around us. The thing is, just like Kerri said in her post, there's no need to sit around fearing that our children will suffer the same fate we did in the autoimmune/genetic pool.
When I was pregnant with our little girl, the question of whether or not she would "get it" (T1) too came up fairly often. I tried to use these instances as education opportunities as I informed people that my children would have about the same chance as anyone else of ending up with this disease. Although their risk is somewhat elevated (4% versus 1%), there's still a very small chance that they'll have Type 1 as a result of my having it. In fact, as stated on the JDRF website, "only 15 percent of people with type 1 diabetes have an affected first-degree relative - a sibling, parent, or offspring." Therefore, that my sister and I both have it makes us an anomaly among anomalies...We're part of the 5-10% of people with diabetes who have Type 1, as well as the 15% of the aforementioned group!
Even though the chance of our children developing T1 is very slim, I'm still going to do everything in my power to decrease that possibility as much as possible. Because of the (loose) link between the protein in cow's milk and T1, I chose to use soy formula when we were forced to start supplementing. Of course, the original plan was to breastfeed exclusively for the first six months; however, we had to start supplementing with formula when she wasn't gaining weight like she was supposed to (which I still believe is possibly due to gastro esophageal reflux, because she will do fine for a minute or two, then arch her back away screaming...her two-month checkup is about two and a half weeks away, so I guess we'll find out then). Because not much is known about the cause of T1 (and because it's an autoimmune disease, and therefore extremely complicated), it's so hard to know what to do to prevent it...I suppose all we can do is raise our kids with a healthy lifestyle and hope for the best!
What many people do not understand is the autoimmune aspect of T1. Thanks in part to the media and popular (mis)conception of diabetes, they assume that age is the only difference between the types. I'll be the first to admit that before I was diagnosed, I didn't understand the difference--and my younger sister was diagnosed years before me! Since my diagnosis, it's become very clear that we need to put more effort into educating the general public about diabetes, but especially T1. It would make life much easier for those of us living with it! I've tried to use every opportunity I get to educate people in everyday conversations, and in November I wrote an article addressing many of the misconceptions about the disease for our local newspaper. However, it seems like for every person who "gets it," there are 10 more who don't. Sometimes it seems like a losing battle, but I refuse to give up. Until there's a cure for Type 1, the next best thing is making living with it easier, and that's something I--and you--can be a part of.
Six weeks ago, our lives changed. Six weeks ago, we brought home a precious baby girl that still seemed like somewhat of a stranger to us (but whom we've since come to understand a little better, thankfully!). In the time since, I've grown as a person. I've learned what it truly means to be selfless as I've spent countless hours in a sleepless delirium trying to please a screaming baby, often to no avail. I've come to understand a different kind of love, one in which the prospect of this tiny person being hurt, sick, or just unhappy brings a sinking feeling to my chest. I've learned that good enough is, in fact, good enough when it comes to many things that I was a perfectionist about in the past. Not only is it very difficult to get much accomplished when you're at the mercy of a newborn's crazy "schedule;" it's also incredibly easy to pass the hours and days entirely just holding her in my arms.
Then there's the sheer awesomeness of watching her grow and change before our very eyes...My husband was quickly amazed by the fact that such a tiny little girl could be so strong, and I love to take pictures of her (sometimes several a day) and look back to see how different she looks a short time later. Around her one month "birthday," she started smiling...#ohmygoodness! Her adorable toothless grins never cease to put a smile on my face, even if it is just while she's carrying on one of her "conversations" with the ceiling fan! Last night, I had finally managed to calm her down after she'd been crying when she sighed dramatically. I mimicked her, and got a huge smile in return! It's true when they say that you'll do anything you can to get those priceless grins =)
She's also starting to interact more with the world around her. There is a canopy on her Pack 'N Play that has giraffes hanging from it, and the other day while I was getting ready in the bathroom a short distance away, I could hear her cooing at them...and now they're within arm's reach! I also finally ordered the Skip Hop activity gym I'd been wanting to get for her--it's a little pricey, but it's much cuter than any of the others I've seen. The first time I laid her on it after it came in, I propped her up on her tummy on the miniature Boppy-style pillow it comes with so she could look at herself in the mirror, and I was amazed at how much head control she has! It didn't take long for her to topple over the front of it, though, because her little legs never stop moving...if I lay her on my stomach, she quickly ends up by my face/shoulder as the result of her pushing off with them. Of course, I knew when I was pregnant with her that she was going to be a little wiggle worm...she never stopped moving! I didn't even bother doing the prescribed "kick counts" at the end because she moved so much...in that way, she's definitely her daddy's child!
To shift gears a little, I was reading a post on SixUntilMe the other day about Kerri checking her daughter's blood sugar and the fear that comes with being a parent with T1. As Kerri says, it's a thought that creeps up on you, either during (or before) pregnancy or when a harmless symptom (such as a wetter-than-normal diaper or an extra-thirsty baby) pops up later on: the big "What if?". As a PWD, we're very familiar with the subtle symptoms that accompany this disease, and sometimes we're a little over-vigilant when we see them in those around us. The thing is, just like Kerri said in her post, there's no need to sit around fearing that our children will suffer the same fate we did in the autoimmune/genetic pool.
When I was pregnant with our little girl, the question of whether or not she would "get it" (T1) too came up fairly often. I tried to use these instances as education opportunities as I informed people that my children would have about the same chance as anyone else of ending up with this disease. Although their risk is somewhat elevated (4% versus 1%), there's still a very small chance that they'll have Type 1 as a result of my having it. In fact, as stated on the JDRF website, "only 15 percent of people with type 1 diabetes have an affected first-degree relative - a sibling, parent, or offspring." Therefore, that my sister and I both have it makes us an anomaly among anomalies...We're part of the 5-10% of people with diabetes who have Type 1, as well as the 15% of the aforementioned group!
Even though the chance of our children developing T1 is very slim, I'm still going to do everything in my power to decrease that possibility as much as possible. Because of the (loose) link between the protein in cow's milk and T1, I chose to use soy formula when we were forced to start supplementing. Of course, the original plan was to breastfeed exclusively for the first six months; however, we had to start supplementing with formula when she wasn't gaining weight like she was supposed to (which I still believe is possibly due to gastro esophageal reflux, because she will do fine for a minute or two, then arch her back away screaming...her two-month checkup is about two and a half weeks away, so I guess we'll find out then). Because not much is known about the cause of T1 (and because it's an autoimmune disease, and therefore extremely complicated), it's so hard to know what to do to prevent it...I suppose all we can do is raise our kids with a healthy lifestyle and hope for the best!
What many people do not understand is the autoimmune aspect of T1. Thanks in part to the media and popular (mis)conception of diabetes, they assume that age is the only difference between the types. I'll be the first to admit that before I was diagnosed, I didn't understand the difference--and my younger sister was diagnosed years before me! Since my diagnosis, it's become very clear that we need to put more effort into educating the general public about diabetes, but especially T1. It would make life much easier for those of us living with it! I've tried to use every opportunity I get to educate people in everyday conversations, and in November I wrote an article addressing many of the misconceptions about the disease for our local newspaper. However, it seems like for every person who "gets it," there are 10 more who don't. Sometimes it seems like a losing battle, but I refuse to give up. Until there's a cure for Type 1, the next best thing is making living with it easier, and that's something I--and you--can be a part of.
Wednesday, February 29, 2012
Patient Responsibility...And a Baby Update, Of Course =)
My last posts haven't had as much to do with diabetes as much as with my pregnancy and subsequent labor/delivery, so today I thought I'd go back to my roots for this one...although I'll preface with a baby update =)
Our little one is doing great--at five weeks old, she's growing and changing every day! I was looking at some pictures of her from while we were in the hospital and right after we brought her home, and I was amazed by how different she looks already. I also can't believe that she's already five weeks old...the time is already going by so fast =( We had our first health scare last week when our baby girl started coughing at night, but luckily a trip to the pediatrician (an hour and a half away) relieved our fears--she just had a head cold, and the cough was from the accompanying drainage. Nonetheless, I was glad to have answers since we were told that while sneezing in a baby was normal, coughing was not. Not to mention that there's so much sickness going around right now...even though we've made it a point to stay home during these vulnerable first weeks, we still have visitors and can't avoid being in public for checkups and the like.
Even though I didn't think it was anything serious, I couldn't help but worry about her--especially since I'm at home with her most of the day by myself with only my thoughts to keep me company! I know it's only the beginning of parental worry, but that doesn't make it any easier to deal with...even as we sat in the (sick) waiting room of the doctor's office, I couldn't help but think that if she wasn't sick to begin with, she might be by the time we left due to the older kids who were coughing around us! Thankfully, though, everything turned out fine. At the end of the week, I had to go back for my postnatal checkup where I had an IUD (Mirena) put in...as much as we love our little bundle of joy, I doubt we'll be ready for another one for a couple of years!
While we were in the waiting room, I had to buckle the little one back into her car seat since I'd just put her in there after feeding her in the parking lot before the appointment. I quickly realized that was a mistake, because as soon as she was uncovered, a woman with her pregnant daughter and two-year-old grandchild came over to investigate. I know it's a first-time parent thing, but it took everything I had to not go all "mama bear" on them as the grandmother kept pushing the toddler towards our car seat telling her to "look at the baby!" I simply finished buckling her in while my mom answered their questions, and bundled her back up! Let me just say, I have no problem with people I know getting close to or holding our little one (as long as they're not sick and their hands are clean!), but random strangers?! I'll be the first to admit it freaks me out, and I won't apologize. After all, how do I know that the toddler wasn't sick? It may sound a little extreme, but pertussis (whooping cough) can kill a baby our little one's age, so until she can get her first dTap vaccine (at two months), she's vulnerable...and it's our responsibility to protect her. For that reason, we're following our pediatrician's advice of keeping our baby girl away from public places (and other young/unvaccinated children) as much as possible until the two month point...which means no church, grocery store/Walmart trips, or hanging out with our friends and their kiddos. It's hard, but at this point our social life is much less important than keeping the little one healthy!
Okay, now that we've got all of that covered, down to business =)
I placed an order for glucose sensors for my CGM (Continuous Glucose Monitor) on February 10th, but never received notification that it had shipped. On Monday, I called Medtronic and found out that the holdup was that my endocrinologist hadn't faxed the certificate of medical necessity back to them. After having Medtronic re-fax the form, I called my endo's office to confirm they got it and let them know that I needed them to fill it out and return it ASAP...our new insurance year begins March 1st, so I needed to have my order shipped by today in order for it to be covered under this year, for which we'd already met our (ridiculously high) deductible. They said they would get it taken care of, so in the meanwhile I checked the status of my order online on a regular basis. By today, I was starting to get nervous. I called Medtronic back to find out why my order still hadn't shipped, and found out that my endo hadn't checked the CGM box on the prescription form, so they were going to have to fax it to them once again to be signed. This afternoon, I called the endocrinologist's office to make sure they received it and to give them the instructions on properly filling it out and sending it back. A while after that, I called Medtronic (again...thankfully you get to talk to a different person every time, otherwise I'm sure they'd be tired of me by now!), only to find out that it would take 24-48 hours before the prescription certificate would be reviewed and scanned into their system.
As a result, I was forced to cancel my order...there was just no way, with the medical bills we're fixing to have to pay from the c-section and hospital stay and my husband's taxes that will be due in April (on top of our usual bills, baby stuff, and my insulin pump supplies, which run $492.80 every three months), that we need another $1,000 (the rough amount we'd be responsible for with the 20% insurance discount for my three boxes of glucose sensors) to worry about paying. My parents offered to help, but I don't feel like that's their responsibility. So right now, I'm disappointed and frustrated. Disappointed that I'll soon run out of sensors, because even though I only use them occasionally now, they're super helpful in keeping an eye on my blood sugars as well as in adjusting insulin rates. Frustrated (extremely) that everything was finally resolved to get my order out one day late, which is just my luck--a day late, a dollar short!
I'm mostly frustrated with my endocrinologist, because I suspect that the reason my form wasn't filled out and returned sooner is because he was on vacation (several members of my family also see him, and their stuff was just taken care of yesterday as well). I have nothing against vacations, of course, but it would have been nice for his office to have called and let me know so I would have known why my order was delayed for more than two weeks. Now I'm stuck with no sensors, which admittedly aren't as much of a necessity now that I'm no longer pregnant, but are still an integral part of my diabetes management...unless we end up meeting our deductible elsewhere, which is unlikely since my insulin pump supplies for a year don't come close to that amount, or I order a smaller quantity of supplies at a time. I guess we'll see what happens!
Probably the suckiest part about the whole ordeal is the realization that I wouldn't have even known why my order was held up had I not been persistent about getting to the bottom of it. As if living with diabetes isn't hard enough, I hate, hate, hate having to deal with the financial and political parts that come along with it...and on the spectrum, I'm very active in my health and d-management. I sometimes wonder how people who aren't as involved in their healthcare do it, because I have to be very on top of things to ensure I get the care and everything else necessary to manage this disease. It certainly begs the question of how much responsibility a patient should have in their healthcare, especially when a disease like diabetes (and insulin!) is involved...I can't help but question whether all PWD have to deal with the same things I do, or if doctors simply evaluate how much freedom (and therefore responsibility) to give their patients on an individual basis. I honestly believe it's the latter, because I know that my endocrinologist has been pretty laid-back as far as how often he sees me (every quarter, even during my pregnancy, whereas he saw my sister every month or so during hers, and my next visit will be five months from the last...) and the level of control he gives me over my own d-care--I make the necessary changes to my insulin rates based on my blood sugar logs, and contact my CDE (rather than my endocrinologist) if I run across any problems.
I know from reading other diabetes blogs and from other PWD that I know personally that the level of control patients are given varies greatly, but sometimes I wonder if some of us are given too much responsibility when it comes to making sure things happen the way they should regarding our healthcare issues...I know in this instance, I would have rather not had to taken so much time and put so much effort into finding out why my supplies hadn't been shipped!
Our little one is doing great--at five weeks old, she's growing and changing every day! I was looking at some pictures of her from while we were in the hospital and right after we brought her home, and I was amazed by how different she looks already. I also can't believe that she's already five weeks old...the time is already going by so fast =( We had our first health scare last week when our baby girl started coughing at night, but luckily a trip to the pediatrician (an hour and a half away) relieved our fears--she just had a head cold, and the cough was from the accompanying drainage. Nonetheless, I was glad to have answers since we were told that while sneezing in a baby was normal, coughing was not. Not to mention that there's so much sickness going around right now...even though we've made it a point to stay home during these vulnerable first weeks, we still have visitors and can't avoid being in public for checkups and the like.
Even though I didn't think it was anything serious, I couldn't help but worry about her--especially since I'm at home with her most of the day by myself with only my thoughts to keep me company! I know it's only the beginning of parental worry, but that doesn't make it any easier to deal with...even as we sat in the (sick) waiting room of the doctor's office, I couldn't help but think that if she wasn't sick to begin with, she might be by the time we left due to the older kids who were coughing around us! Thankfully, though, everything turned out fine. At the end of the week, I had to go back for my postnatal checkup where I had an IUD (Mirena) put in...as much as we love our little bundle of joy, I doubt we'll be ready for another one for a couple of years!
While we were in the waiting room, I had to buckle the little one back into her car seat since I'd just put her in there after feeding her in the parking lot before the appointment. I quickly realized that was a mistake, because as soon as she was uncovered, a woman with her pregnant daughter and two-year-old grandchild came over to investigate. I know it's a first-time parent thing, but it took everything I had to not go all "mama bear" on them as the grandmother kept pushing the toddler towards our car seat telling her to "look at the baby!" I simply finished buckling her in while my mom answered their questions, and bundled her back up! Let me just say, I have no problem with people I know getting close to or holding our little one (as long as they're not sick and their hands are clean!), but random strangers?! I'll be the first to admit it freaks me out, and I won't apologize. After all, how do I know that the toddler wasn't sick? It may sound a little extreme, but pertussis (whooping cough) can kill a baby our little one's age, so until she can get her first dTap vaccine (at two months), she's vulnerable...and it's our responsibility to protect her. For that reason, we're following our pediatrician's advice of keeping our baby girl away from public places (and other young/unvaccinated children) as much as possible until the two month point...which means no church, grocery store/Walmart trips, or hanging out with our friends and their kiddos. It's hard, but at this point our social life is much less important than keeping the little one healthy!
Okay, now that we've got all of that covered, down to business =)
I placed an order for glucose sensors for my CGM (Continuous Glucose Monitor) on February 10th, but never received notification that it had shipped. On Monday, I called Medtronic and found out that the holdup was that my endocrinologist hadn't faxed the certificate of medical necessity back to them. After having Medtronic re-fax the form, I called my endo's office to confirm they got it and let them know that I needed them to fill it out and return it ASAP...our new insurance year begins March 1st, so I needed to have my order shipped by today in order for it to be covered under this year, for which we'd already met our (ridiculously high) deductible. They said they would get it taken care of, so in the meanwhile I checked the status of my order online on a regular basis. By today, I was starting to get nervous. I called Medtronic back to find out why my order still hadn't shipped, and found out that my endo hadn't checked the CGM box on the prescription form, so they were going to have to fax it to them once again to be signed. This afternoon, I called the endocrinologist's office to make sure they received it and to give them the instructions on properly filling it out and sending it back. A while after that, I called Medtronic (again...thankfully you get to talk to a different person every time, otherwise I'm sure they'd be tired of me by now!), only to find out that it would take 24-48 hours before the prescription certificate would be reviewed and scanned into their system.
As a result, I was forced to cancel my order...there was just no way, with the medical bills we're fixing to have to pay from the c-section and hospital stay and my husband's taxes that will be due in April (on top of our usual bills, baby stuff, and my insulin pump supplies, which run $492.80 every three months), that we need another $1,000 (the rough amount we'd be responsible for with the 20% insurance discount for my three boxes of glucose sensors) to worry about paying. My parents offered to help, but I don't feel like that's their responsibility. So right now, I'm disappointed and frustrated. Disappointed that I'll soon run out of sensors, because even though I only use them occasionally now, they're super helpful in keeping an eye on my blood sugars as well as in adjusting insulin rates. Frustrated (extremely) that everything was finally resolved to get my order out one day late, which is just my luck--a day late, a dollar short!
I'm mostly frustrated with my endocrinologist, because I suspect that the reason my form wasn't filled out and returned sooner is because he was on vacation (several members of my family also see him, and their stuff was just taken care of yesterday as well). I have nothing against vacations, of course, but it would have been nice for his office to have called and let me know so I would have known why my order was delayed for more than two weeks. Now I'm stuck with no sensors, which admittedly aren't as much of a necessity now that I'm no longer pregnant, but are still an integral part of my diabetes management...unless we end up meeting our deductible elsewhere, which is unlikely since my insulin pump supplies for a year don't come close to that amount, or I order a smaller quantity of supplies at a time. I guess we'll see what happens!
Probably the suckiest part about the whole ordeal is the realization that I wouldn't have even known why my order was held up had I not been persistent about getting to the bottom of it. As if living with diabetes isn't hard enough, I hate, hate, hate having to deal with the financial and political parts that come along with it...and on the spectrum, I'm very active in my health and d-management. I sometimes wonder how people who aren't as involved in their healthcare do it, because I have to be very on top of things to ensure I get the care and everything else necessary to manage this disease. It certainly begs the question of how much responsibility a patient should have in their healthcare, especially when a disease like diabetes (and insulin!) is involved...I can't help but question whether all PWD have to deal with the same things I do, or if doctors simply evaluate how much freedom (and therefore responsibility) to give their patients on an individual basis. I honestly believe it's the latter, because I know that my endocrinologist has been pretty laid-back as far as how often he sees me (every quarter, even during my pregnancy, whereas he saw my sister every month or so during hers, and my next visit will be five months from the last...) and the level of control he gives me over my own d-care--I make the necessary changes to my insulin rates based on my blood sugar logs, and contact my CDE (rather than my endocrinologist) if I run across any problems.
I know from reading other diabetes blogs and from other PWD that I know personally that the level of control patients are given varies greatly, but sometimes I wonder if some of us are given too much responsibility when it comes to making sure things happen the way they should regarding our healthcare issues...I know in this instance, I would have rather not had to taken so much time and put so much effort into finding out why my supplies hadn't been shipped!
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