It's Been A Long Time Since (You've) Seen (My) Face...

When I was thinking of a title for this post, I couldn't get this song out of my head:

I know it's been entirely too long since I've written, and all I can say in my defense is that I've been incredibly, incredibly busy and a lot of things have been going on in our lives.

First off, my husband got back around a month ago from working out of state and got to be home for three weeks, but then his brother's wife had their baby so he went back to run his crew while he took some time off. That was a little over two weeks ago, and even though I'm used to him being gone, it still isn't fun to see him go.

It usually isn't too bad once Baby Girl and I settle into our routine, but this time has been a little different. Instead of our usual staying at home during the day schedule, the first few days of last week I was a group leader at our church's VBS. I also had to fix a stopped up drain in the bathtub by myself, and have been washing curtains, miniblinds, and moving furniture and boxes (by myself) for the past two days in anticipation of our new windows that are being installed tomorrow. I was informed of this appointment on Saturday evening, and my husband isn't getting home until late, late tonight. All of that on top of trying to keep up with our little one, the house, and my work stuff hasn't been easy.

Besides the chaos, I've been in and out of doctors appointments trying to figure out what's going on with me lately. I've mentioned my anxiety issues before (which started with my Chiari flare-up around a year ago)...simply put, it's hard to tell when the physical feelings I'm experiencing are due to my diabetes (low blood sugar), the Chiari stuff, or anxiety. Some of the symptoms overlap, so it's basically a process of elimination. Add to that the fact that my husband has been gone for the better part of six months, and my anxiety quickly got out of hand. One ER visit, a Holter monitor test, and an echocardiogram later, the doctors haven't found any physical cause of my heart racing and palpitations. Everything has come back normal, so at this point we can safely attribute it all to anxiety...upwards of $2,500 in testing/visits later.

It's all been frustrating to say the least, and all I want is to feel better...normal. I've literally reached the point of being "sick and tired of being sick and tired." It seems like if it isn't one thing, it's another. My awesome doctor has been working diligently to balance my medications in order to gain control of my anxiety, so that's been a huge help. Since I was having actual panic attacks, I was taking a very small dose of Xanax whenever they would occur until the Celexa started to kick in. Since that failed to effectively manage my anxiety level, she upped the dose on my Celexa and prescribed me Buspar to replace the Xanax (not on an as-needed basis, of course, but as an additional means of eliminating the anxiety). With the addition of the Buspar, my anxiety has all but disappeared.  So basically, I'm taking a lot more medication than I'd like to be on, but I'm finally starting to feel human again.

Ideally, I would like to be medication-free, but obviously that isn't an option for someone that needs artificial insulin to survive. I'd at least like to get rid of my muscle relaxers for the Chiari and my anxiety medication, though. I discussed it all with my doctor keeping the future in mind, because I didn't want to be on something that would either be extremely hard to come off of or dangerous during pregnancy/breastfeeding later on. I'm by no means ready (physically or mentally) for another baby, but clearly I have to plan waaay in advance for those things!

Diabetes-wise, it's pretty much hit or miss it seems. I have some days or weeks that are really good, and some that I'd rather not think about. Highs frustrate me, but lows scare me. I've been very successful at avoiding the lows, but I still see more highs than I'd prefer to have. My next endo appointment is next month, so I'm interested to see how my A1c is. If I had to guess, I'd say it's probably going to be about the same as last time. I'm just hoping it's not worse. It's hard to explain to someone who doesn't have to monitor something that their body does naturally, but it's unbelievably frustrating to try so hard and want so badly to have normal numbers and not get them. I'm also pretty self-sufficient when it comes to my diabetes management, but I think if my numbers aren't where I like them this go-around I'm going to enlist some professional help to see what I'm doing wrong. I think sometimes I just get in a rut and either miss things I could be doing; or the opposite, I start doing too much and screw everything up.  I know a lot of it can probably be attributed to the stress I've been dealing with, but that doesn't make it any easier to accept. If anything, that lack of control just adds to the stress.

More than anything, it all makes me want a cure that much more. At our last JDRF board meeting, we were shown this video: http://www.youtube.com/watch?v=QNYI3ofxbJ8 (for some reason, I couldn't find it on Blogger to embed, so you'll have to follow the link to watch it). It's so amazing to think that in the semi-near future, people with T1D will have the ability to wear a machine (insulin and glucagon pump + continuous glucose monitor) that automatically regulates their blood sugar. Obviously it's not a full-blown cure, but it is a dramatic, exciting leap in diabetes technology. In addition, there is also current research that is focusing on encapsulating functioning islet cells for implantation to replace the body's own nonfunctioning cells, which would be very close to a literal cure in my way of thinking. Either way, my biggest hope is that I'll be able to utilize these technologies in the near future to achieve a better level of control over this disease.

With that said, I better go put our puppy up for the night and get ready for bed! My husband just made it into town, so I think I'll spend some time with him rather than my usual Facebook =)

Frustrations (Again!)

I've been working from home for about a month now, and so far so good! I love not having the stress of getting me and Baby Girl to the office every day, and not having to worry about getting everything done at home--I'm already there! Of course, the laundry still isn't doing itself (darn!), but I feel more on top of things at home since I moved my work there. These days, I get up whenever the little boss does (which never seems to be very late!), check my emails, and do whatever needs to be done, whether it's a CAD drawing or the dishes. The funny thing is, I figured being at home would give me some time to catch up on all the shows I've missed while working, but my DVR is still just as full as when I was going to the office! There is always something that needs to be done...

I was hoping (and still am!) that the reduction in stress from this change will help me bring my blood sugars back into the range I like them. The first couple of weeks, my average dropped about 10 points or so, but it's leveled out again since then. I had my first appointment with my endocrinologist since October last week, which is crazy since I'm supposed to see him every four months! Due to an unexpected snowstorm when my appointment was originally scheduled, they had to push it back a month or so. I didn't realize it had been a whole six months since I'd seen him! Anyway, there isn't much to report as far as the actual appointment goes, though there never really is anything to say about that part! Then there's the lab work...

Last time I saw my endo, my A1c had gone up from 5.5% to 6.4%. Back then, I was pleasantly surprised because I was expecting it to be quite a bit higher since I'd been running a higher-than-normal average to eliminate lows as much as possible with all of my Chiari stuff going on. This time, after all of the work I've put into getting my numbers back down where I want them, I was hoping for an even lower number. Suffice to say, that wasn't the case. I got my results in the mail last Saturday, and was very upset to see my A1c was 6.6%. That's right, it went UP. I was literally in tears out of pure frustration. It seems like no matter what I do, I can't get everything back on track. I don't know if it's hormones, my crazy body, or just something I'm doing wrong, but I just can't seem to fix my blood sugars or lose the weight I've been trying to get off for the past year. You have no idea how incredibly maddening it is to try and try and try, and not see any results. I started walking again a few weeks ago, and have been trying to eat healthier as well. I think I've done fairly well, and yet I've GAINED a couple of pounds. Seriously? As hard as it's been for me to lose the last 10 lbs, I NEVER have trouble maintaining my weight. I don't think it could be muscle, either, because I'm not lifting weights or anything-just walking. I know they say not to weigh yourself all the time, but I've weighed myself pretty much every day the past several years because it helps keep me on track...most of the time.

Needless to say, I'm pretty discouraged right now. I'm trying to lower my blood sugars and lose weight, and my numbers and weight are going up instead. When I think of all the effort I've put into both things, I just want to scream...and give up. I don't have many of these "poor pitiful me" moments, but I think even the most optimistic of us go through those phases at some point. It's very hard to give and give and give, only to see nothing in return. It may be character-building, but it's not fun.

The night before last, I reworked my basal/bolus rates on my pump AGAIN in hopes that I can straighten things out. This time I re-read Gary Sheiner's "Think Like A Pancreas" to see if I could find anything in there that would help me. The one thing that jumped out is the timing of boluses...My after meal numbers are the worst offenders in my blood sugar control mission, and with all the craziness that comes along with being a mom, I sometimes don't bolus until the end of a meal-especially if my blood sugar is on the lower side of normal to begin with. Obviously, that doesn't work so well. I've never actually forgotten a bolus, but since the peak from insulin should coincide with the peak in blood sugar from your food intake, timing is huge. I'm going to make a conscious effort to stay on top of it and bolus right before or at the start of a meal. Hopefully between that and my new basal rates, my numbers will get better. I don't know what I'm going to have to do if they don't!

God's Timing

I thought I would try to blog more frequently this year, but once again it's been a month since my last post! I discussed last time how I fantasize at times about what life would be like for me now if I didn't have to deal with T1D, but I want to talk this time about something a lot of people bring up when I tell them I was diagnosed with something that used to be referred to as "juvenile diabetes" as an adult.

As many of you already know, I was diagnosed with T1D on August 24, 2010 (my seven-month wedding "anniversary"), at age 22. Some people think it's probably harder on me since I know what it was like to be T1D-free, and others think it's better because I got to have a normal childhood. To be honest, it's both. I sometimes think about how easy things were before, when I could eat something and not have to think about how it was going to affect my blood sugars. I always ate fairly healthy most of the time before, but it was still nice to have the option not to every now and then and not having to worry about it having a lasting impact on my body! I think that being healthy, or even being "normal", is something that we all take for granted until our lives change and make us think about things differently.

On the other hand, I'm so, so glad I was able to have a pretty average, healthy childhood. I didn't have to worry about my blood sugar being low during class (or recess!), or trying to hide an insulin pump under a prom dress. My pancreas did all of the thinking and worrying for me...until it quit. I think a lot about how I could have easily been diagnosed a year or two before, while I was still in college. I don't know if I could have graduated with a 4.0 had I been forced to deal with T1D on top of everything else. I biked across campus to get to my classes, so I would have had to factor in how that would affect my blood sugar on top of an already hectic eating schedule...one semester I had classes from 9:30 a.m. to 3:30 p.m., so I pretty much had to eat lunch at breakfast time if I didn't want to starve for the rest of the day. If I had T1D back then, I wouldn't have been able to do that.

When it comes down to it, I know God has a plan for my life and that I was diagnosed when I was for a reason. I'm incredibly thankful that He gave me the time to get my body back under (relative) control before we decided to have children instead of me having to figure out an entirely new life during pregnancy or while trying to take care of a baby. It's hard enough caring for a little one and dealing with diabetes at the same time even with the past couple of years' experience under my belt. Our now-toddler is pretty high-maintenance at times, but my diabetes is just as bad as a colicky infant...but sadly, it's one that never grows up!

Timing is everything in life, and with diabetes it's no different. Some think that being diagnosed as a young child (or baby) would be preferable to being diagnosed later in life because then "you wouldn't know any different," but try telling that to the parents of a 15-month-old whose life won't be the same until a cure is found. Diabetes is so much more manageable today than it was before insulin was discovered a little less than a century ago (when it was a virtual death sentence), or even before the advent of home blood-glucose meters in the last 40 years; however, it's still an absolutely life-changing event for the person who is forced to deal with it.

I don't think people without diabetes can truly understand how gut-wrenching it is to know you're going to have to depend on a medication for the rest of your life (at least until a cure is found!), something that is far from perfect. You can easily use too little or too much; dosing is not an exact science. And even if you do get the dosing exactly right based on what you're eating, a multitude of other things (that you can't always account for) can impact your blood sugar levels--stress, sleep (or lack thereof), exercise (or not exercising)...the list goes on.

Having tight blood sugar control also comes at a price--the lower your average, the higher your risk of lows. Low blood sugars are so frightening to me now that I have someone that depends so fully on me that I usually err on the side of caution these days and run a bit higher than I'd like just to avoid them. This is the catch-22 I'm facing now that we're trying to decide when to expand our family. Before I didn't really have to worry about the lows, so I would always choose them over a high. Now I just don't have that option, so getting back to the level of control I had before and during my pregnancy has been extremely difficult.

For that reason, we've decided that I'm going to have to make some changes to my routine before we think about another baby. The stress of coming to the office every day and taking care of Baby Girl while I'm working (and the fact that my husband is working out of the state until June) makes my blood sugars even harder to maintain, so I talked to my bosses(/parents) recently about working from home the majority of the time since my averages are always better when I'm there. I don't know when I'll make that transition, but I'm hoping it will make my life a little easier. At this point, any amount of "easier" is better in my book! I went back and forth over this decision, but at some point you just have to do what's best for you and your family. In this case my health is also hanging in the balance, so that adds an entirely different dimension to the game.

While I don't know when we'll seriously consider adding to our family, once again I know God has a plan for us and everything will happen in His time. I'm just going to have to trust that whatever needs to happen to get my life (and blood sugar) back under control will happen, and do what I can to make things better for my family!

Happy New Year! (2012 Summary; The APP & SDP)

It's a new year again, and what a big year 2012 was for us! I could go into more detail, but I think it can all be summed up in one simple sentence: We became parents! Everyone talks about how parenthood changes your life, but you truly don't understand it completely until you're a parent yourself...even when you're pregnant you can't fully comprehend what it's like to go night after night (after night, after night) without good (or even decent) sleep, or on the flip side, the amazing, indescribable joy that comes from the simplest things, like when your baby smiles or laughs.

It was also a year filled with new challenges in regards to my diabetes management routine. In the two and a half years since I was diagnosed, I don't think I've ever had such a hard time controlling my blood sugars-- aside from the first couple of weeks that I was pregnant. The biggest change for me has been a new-found fear of lows...even when I was pregnant, lows weren't really that big of a deal. If I were given the choice, I'd have picked a low over a high any day. Now that there's a little person whose safety is very literally completely dependent on my being able to take care of her, though, I have a very different view of things. I was extremely cautious about lows shortly after our baby was born, but it wasn't until my first experience with glucagon and what turned out to be a Chiari-related scare in Target that I became terrified of them.

My biggest fear is that I'll be giving my baby girl a bath or driving down the road with her and have a debilitating low. Either of those cases would be horrible, and they're not something I like to think about...but I have to. I have to because I have to think about them in order to prevent them. I don't get my sweet baby ready for her bath until I check my blood sugar, and I'm very careful while driving too. For the most part, I haven't had very many bad lows because I've been intentionally running slightly higher than I'm used to to avoid them.

As a result of that, though, I've had way more highs than I'm used to, and I hate it. I hate it because I'm a perfectionist to the core and want my numbers to be normal(ish). I told my husband we'd wait until our little one was at least a year old before thinking about another baby, but at this point I'm not comfortable enough with my ability to control my blood sugars like I did during my first pregnancy to take that step yet. I want to give our next baby the same chance at a good, healthy life as I did with our first, end of story. I don't know when I'll be ready, but I do know that it won't be until I get a better handle on things d-wise.

I've made a lot of changes to my insulin routine over the past few months in an effort to gain better control, but it's been hit or miss. What works one week (or day) may not the next, and any change in my routine causes a major overhaul to my insulin needs as well. I started exercising consistently a couple of months ago, but the week before Christmas our baby girl had an ear infection and I couldn't work out. Then there were the Christmas holidays, and since my husband was home (he's been working a few states away), I wanted to spend as much time possible as a family. Since then, I just haven't taken the time to exercise. I need to get started again because I KNOW I feel better when I'm consistently working out, but it's so hard to get back into the habit! I can also tell a big difference in my blood sugars then, although it makes preventing lows a little more complicated =)

Last year there were a lot of successes in the diabetes technology world too. The Artificial Pancreas Project is making good progress, and looks like a very promising treatment method for T1D. I know it's still going to be a while before it's available to the general public, but it's hard not to get excited about it! Here's what I posted on my Facebook page about the APP:

It's not a cure, but it will make our lives better and easier...a little more normal. Normalcy is something you take for granted until it's gone.

THIS is what we're all working for. As Jeffrey Brewer (JDRF President and CEO) says, "Less until none." Less needles, less complications, less highs and lows. Those are the things that T1D steals from us. You often hear about the time diabetes takes from your life, but most of the time it's discussed in terms of the years lost at the end. The reality of living with this disease means that you lose seconds, minutes, and hours; everyday moments (like sleep, when you're waiting for your blood sugar to stabilize before bed) and priceless ones that you can't get back. I don't even want to think about all the precious time I've missed with my daughter, being forced to tell her to "wait just a little bit" while I check my blood sugar, fix my basal rate, or change my pump site. It's so, so hard to put the needs of my diabetes before hers, but in the end I know it's what I have to do...the whole "put your oxygen mask on before assisting others" thing. Not doing it isn't an option, because I refuse to let diabetes steal anything else from my life or hers.

I think a lot about what my life would be like without T1D. Of course I know what it was like before (I was only diagnosed a little over two years ago), but I'm talking about now. Now that I have a daughter who needs me, and whom I love more than anything else in the world. It would be so awesome to not have to calculate carbs, or think about how everything else (sleep--or lack thereof, exercise, illness) will affect my blood sugar. It's a constant balancing act, and it always seems to tip to one side or the other. I would love to be able to have normal blood sugars again without thinking about it all. It's the "what if" that a lot of people with T1D don't like to fantasize about, because they don't want to get their hopes up that a cure will be found in their lifetime. I, however, have faith that even if a true cure is a long way off, new research developments will at least make our lives better. And as Chuck Eichten says in his book "The Book of Better: Life With Diabetes Can't Be Perfect. Make It Better", any amount of better is better. Perfection isn't attainable (although that's something I've yet to take to heart!), but better is. The Artificial Panreas Project isn't a cure, but it will mean a better life for those of us with T1D.

On a similar note, Congress recently renewed the SDP (Special Diabetes Project), which means that millions in essential funding will be available for diabetes research. According to the JDRF, "The SDP provides nearly 35 percent of the publicly-funded T1D research at the National Institute of Health (NIH)." This is HUGE. The JDRF works incredibly hard to obtain private funding, but private donors alone can't fund all the research that needs to be done, and the SDP covers some of that gap. Why is that so important? Because a cure could be waiting to be found in that gap. If the funding isn't there, the research doesn't get done. If the research isn't done, no progress can be made. If research progress is at a stand still, we don't get any closer to finding a cure. THAT is why it's so important.

Hopefully 2013 will bring some amazing new developments in diabetes treatment and technology, and better lives for all of us living with this disease!

Frustrations

It's been about a month since I last posted about changing all of my pump settings, and although things have gotten better, it hasn't been as noticeable (or quick) of a change as I'd like it to be. To be honest, I've been very frustrated with my lack of progress. Everyone who knows me or reads my posts is well aware of the fact that I'm a perfectionist to the core...so when my blood sugar #s are not where I'd like them to be, it irritates me.

The worst part about it all is that I know I can do better. Throughout my entire pregnancy, even though I had plenty of lows and highs, I was still able to keep my average in the normal range and my A1c stayed under 6.0%. Recently, however, I've had such a hard time getting my average back down to 130-135...it used to be closer to 115. I know a lot of it probably has to do with changing hormones (hello, postpartum period) and stress (ditto), but it's been hard for me not being able to control things as well as I used to.

I'm torn between being afraid of crashing and annoyed by highs, and for the past couple of months, the fear has won out. Now that I'm sure of what's behind my dizzy "low" feeling and that is slowly getting better, I've been slightly more comfortable with running lower again. It seems like such a long, frustrating road, but I'm hoping that my progress (however slow it may be) will continue and things will get better.

I re-worked my basal/bolus rates once again just like I did about a month ago, and again increased my TDD of insulin in hopes that it'll bring my average down a little more. As frustrated as I am by feeling so "out of control", I feel like that's all I can do so that maybe--just maybe--it will help. Either way, at least I'll be doing something, which always makes me feel better about the situation.

Through all of this, I've tried to remind myself that a few months of so-so control compared to a year and a half or two years of pretty great control isn't so bad...that in the grander scheme of things, it shouldn't make much of a difference. Nevertheless, as Type A as I am, it still feels comparable to one of those irritating little rocks in your shoe that you can't get to. Last week, I bought one of those at-home A1c tests that you mail off and can then get results either through the mail or online. I received an email this morning that my results were in, so I logged on and was admittedly more than a little disappointed to see it was at 6.9%. I know that the ADA recommends that someone with diabetes keep their A1c under 7.0%, but being the perfectionist that I am and knowing what I'm capable of, I like to keep mine in the normal person's normal range (4.0-6.0%). Even when I was first diagnosed, mine was never higher than 6.5%!

Now I know that 6.9% is still in the 6's, and it's still below 7.0%, and my endocrinologist will probably not care as much as I do about it. Usually, I'm much harder on myself than he is, but that doesn't mean I'm comfortable "slacking off." I want to be as healthy as possible for as long as possible...I love my baby girl too much to risk anything else!

Overhaulin'

On Friday, I wrote about doing a complete overhaul on my basal/bolus rates to get a better handle on my numbers. I wasn't sure what to expect, so I went into it with an open mind and some hope that things would finally be better...or at least not as bad as they had been! Well, I'm happy to report that although I've still had some wacky numbers (then again, who doesn't?!), everything is looking much better than before.

I was very skeptical of the one basal rate working effectively, but lo and behold, it seems to be working! My current rate is a little higher at night than the previous ones and quite a bit lower during the day than before, but it seems to be keeping me steady through the entire 24hrs. I'm thinking this single rate thing is going to stick around for a while!

Bolus-wise, I've been trying to trust the bolus wizard, so my postprandials are also much, much better. It's almost weird seeing numbers that are very close to the normal range, because they've been so far from that lately. I'm so glad to feel like I'm finally gaining control of the situation again...those of you who know me are well aware that I'm a perfectionist, so I like to keep my numbers in a tight range. It's always worked for me without too much trouble (except for at the very first of my pregnancy), but I've been so terrified of lows recently that I've ran quite a bit higher than normal just to avoid this...and avoid them I have, but that also means that my average is not where I want it to be.

I'm hoping that with the changes I've made and a little luck, I'll be able to bring everything back to where I want (/need?) them. I've also been working on the stress in my life and trying to improve things (myself included) so I can feel more like myself again. Sometimes I get so overwhelmed with everything that I forget to actually live. Motherhood is hard, and diabetes makes it infinitely harder, but we all do the best we can with what we're given...some of us are just given a little more to deal with than others =)

I knew theoretically how I was supposed to deal with my diabetes on top of parenthood, but reality is always quite a bit different (and a lot less rosy) than the books make it out to be! It seems like whenever my baby needs me most, my diabetes decides to make itself (well) known. Any other time it's perfectly content to lurk in the background, but whenever Baby Girl is throwing one of her Linda-Blair-esque fits or needs to be fed, my CGM is bleeping its lows or highs. I then have to stop what I'm doing and fix the problem, all while my poor baby screams. Her cry is my Kryptonite...it completely gets to me. I can't stand listening to her cry...needless to say, the "Cry It Out" approach is pretty much out of the question for us!

Bottom line, diabetes sucks. But until there's a cure (yay for the JDRF Walk tomorrow!), each of us has to deal with it the best we can...all of the ups, downs, and in-betweens. Some of us deal with everything better than others, and all of us have times when we lose our grip on things. The main thing is to refocus, reevaluate, and try your hardest to keep things in perspective =)

The Grass Is Always Greener

A lot has been said about the Affordable Care Act lately. All political opinions aside, I'm terrified of what it means for those of us with diabetes. Of course, it all sounds good in theory; however, in practice, I'm afraid that it will be a huge mess that we will all suffer for.

Bottom line, you NEVER get something for nothing. Someone ALWAYS pays for it.

Now before someone gets angry and tells me how politically incorrect or socially irresponsible I am, let me say this: I believe in helping those who are less fortunate. However, I believe in giving a hand up rather than a hand out. The system in place now does not promote individual responsibility; rather, it perpetuates a cycle of dependence that is incredibly hard to break. Yes, I absolutely believe that the current health care system needs some change and insurance companies have to be held accountable for the cost of their premiums, but I don't think this is the way to achieve it.

My fears are these:

• According to local news stories, young doctors are now planning to retire early. If the doctors believe this law is going to impact them negatively, I don't have much confidence in their motivation/ability to provide adequate care...and I fear that finding the ones who go above and beyond will be exceedingly more difficult.
• "Free" preventive care? Just like most everyone I've talked to, I believe that we'll be paying for these benefits in one way or another...there might not be a co-pay at the time of the visit, but I'm almost positive that the cost will be accounted for through higher premiums.
• Similarly, moving toward outlawing discrimination due to pre-existing conditions is a great idea; however, I do not believe for a second that people with pre-existing conditions will be paying the same rate as someone without them.
• Even if it turns out that I'm wrong, what price will we have to pay? Even if we're charged the same as everyone else, I find it hard to believe that our needs will be adequately covered. Right now, I pay 20% of my diabetes supplies (after I meet a $3,000 deductible...that's a whole different story); in the future, who knows what kind of coverage we'll be settling for...if we'll be able to jump through the inevitable hoops to get some things covered at all.

So in summation, I'm afraid that this law, which was passed with the intent to lower health care costs for everyone, will actually end up costing us more in the long run in one form or another. I don't know what the ideal solution is, but I have a sinking feeling this won't be it.

During my first American Diabetes Month back in 2010, I wrote about how health care issues affect people with diabetes, and me specifically. I correctly predicted back then that my dream of staying at home once we had children wouldn't be possible due to my need for insurance. This adds an entirely new level of suckiness (yes, I'm making it a word) to an already sucky disease...not only do we have to suffer from the disease itself, but we also have to quite literally pay for having it. Let me break it down for you:

• Test strips--$1/piece; at the current rate I'm using them, $300/month or $3,600/year without insurance; $60/month or $720/year with it.
• Insulin pump supplies (reservoirs and infusion sets only)--$652/3 months or $2,608/year without insurance; $492.80/3 months or $1,971.20/year with...Before the maternity costs of last year, I never meet my $3,000 deductible. Because of that, I never get my supplies covered under the 80/20 plan, and have to pay them at the contracted insurance rate instead. But hey, at least I get that 20% insurance discount...
• CGM Sensors--$420/3 months or $1,680/year without insurance; $327.90/3 months or $1,311.60/year with...although I don't use sensors all the time, partly because I don't feel I need to wear them 24/7 and need a break from the skin wreckage caused by the adhesives from the bandaids I wear to cover them, and partly because not wearing them all the time means I can stretch my supplies out longer.
• Endocrinologist visits--$473/quarterly or $1,892 without insurance; $50 copay or $200/year with.

That comes out to $9,780 without insurance or $4,202.80 with for strictly diabetes-related medical costs, which of course is not including premiums, glucose tablets, or other miscellaneous expenses that I incur thanks to this disease.

Since I work full-time (as a CAD drawing technician for the family business), my employers (aka, my parents) pay 75% of all the employee's insurance premiums. I'm blessed that everything worked out so that I had insurance coverage upon diagnosis and have been able to keep the same policy since then, but I wish so, so badly that we were able to afford private insurance so I didn't have to work full-time. Unfortunately, though, it just isn't feasible for us to forgo my salary and lose my benefits. I realize I'm incredibly lucky to be able to bring my baby to work with me (and have a flexible schedule), but most people don't realize how hard it can be. I don't think I could ever leave her at day care, but it's definitely not easy trying to juggle being a mom and working at the same time (and that's without all the lovely d-related stuff I'm dealing with 24/7). While I'm at work, I have two (/three with the d) jobs going on virtually all the time, and they inevitably interfere with one another...the phone rings, baby wakes up. I need to be working on a drawing, baby is crying. Oh, and by the way, your blood sugar is low...now! It never ends...

Sometimes, like yesterday when I saw a new mom walking with her baby in a stroller on my way to work, I can't help but mourn what could have been if it weren't for this disease and all its related implications for my life. If I didn't have to work (full-time) just so I can keep affordable insurance coverage, I could...

• Spend more time just enjoying my baby, rather than being frustrated by trying to give her the attention she needs without abandoning my job.
• Keep up with her baby books, which are currently in a woefully neglected state. Oh, the things I've missed already...Thank goodness for the iPhone, because without it we'd have no proof of her milestones and day-to-day cuteness!
• Have a clean(er) house, because then I wouldn't have to wait until I got off work to conquer the mountains of laundry and dishes that are always waiting for me at home...If I were at home all day, I could at least throw some loads of laundry in the washer during naptimes/breaks.
• Similarly, I'd actually be able to have more time to enjoy on Saturdays, which have unofficially become "Get Everything Done That I Couldn't Get Around To During The Week Because There Aren't Enough Hours In The Day"-days, during which I get the floor sweeping/mopping/vacuuming, general cleaning, and other organizing done. Ditto for any days off...
• Be around for "playdates" and other social occurrences that are a virtually impossibility for working moms...Especially since every one of my mom friends (and all but one of my in-laws) are stay-at-home moms, it's hard for me to miss out on that stuff all the time! "Let's get together tomorrow afternoon and the kids can play!" Yeah, I don't think I'll be able to get off work for that, unfortunately...oh, and that last-minute baby shower/Pampered Chef party/whatever you invited me to? Sorry, I'd love to come (really, I would!) but if I take the time out to go, I'll be catching up on laundry and assorted housecleaning duties for the next week.
• All of that crafty/artsy stuff I used to do? I haven't had time for any of it in oh, about six months! Working and taking care of the baby (and house) is all I have time for every day, and even at that, something usually gets left out. I have a quilt for my baby girl that I started long before she was even conceived that is still sitting on my sewing machine, about 75% quilted and needing to be binded, but who knows when I'll ever have time to finish it. Oh, and I can pretty much write off any hope of ever doing anything on Pinterest!

Yes, I know you don't spend all day doing fun activities you saw on Pinterest, but that's the way I like to imagine my future life as a SAHM...

I know that being a stay-at-home mom is hard work too (I got to do it for a couple of months, let me remind you!), but right now I have to manage doing everything a SAHM does while working, because there's nobody else around to take up the slack. As much as I love the hubby, he hasn't come around to helping more like I expected he would since I've been back at work, so I'm stuck doing everything I did while I was at home plus working during the day...which is pretty much impossible.  I'd never choose to work full-time if I had the choice. Part-time I could easily do (and would want to do), but I would LOVE to not have to come in Every. Single. Day...Forever.

I don't know what the solution to this dilemma is, and I know that there are tons of people who are much worse off than I am. In fact, I probably sound like a spoiled brat compared to a lot of people! But when you spend the little free time you have surrounded by people who are living the life you want to have, it's a constant reminder of what could have been. On the flip side, I'm sure that some of them wish they could do what I'm doing rather than staying at home...the grass is always greener, right? I completely realize we all idealize the other side of things, and I know I need to work on being happier where I'm at now instead of longing for what (right now, at least) is unattainable. I just hope that by the time Baby Girl is a little older (before she goes to school!), it will be possible for me to spend some time with her at home...


 ‎**Let me just say, it's not my intent to offend you moms who do get to stay at home by trivializing what you do in any way! I'm simply making the point that because of my health status, I'm forced to work rather than having the choice. And when you don't have a choice in what you do, it makes the "doing" so much more difficult...especially when all of the moms you hang out with are doing what you wish you could do! I feel like I'm missing out on a lot, both with my baby and socially, because I literally don't have time to do anything but work-both at my job and at home...

Adventures With Glucagon

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!

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.

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!

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!

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!

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.

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.

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!

An Eventful Delivery of a Precious Package

My last post was a little over a month ago, but I promise I have a very good reason this time...our sweet little girl is almost four weeks old!  Everything I last wrote about seems like it happened in a different lifetime, because there is now a very clear distinction between our lives before and after baby...and I honestly can't believe how quickly time is flying by now that she's here!  Speaking of which, I'll fill you in on the crazy journey that was her arrival...

As most of you know, we were scheduled for a c-section on January 25th.  The day before, we were supposed to go for my last ultrasound and OB visit to confirm that our little one was still breech and to go over any last-minute details and questions.  However, we never made it that far...it turns out that my mom's "feeling" that she would come before then was right!  Around 2:30AM on the 24th, my water broke.  After waking up my husband (whose first question was, "Are you sure?"...Yes, honey, I am positive that the huge gush I just experienced wasn't courtesy of my bladder!) and calling to talk to the doctor on call, we finished up packing the last few things so we could begin the hour-and-a-half drive to the hospital.  The OB I talked to told me there was no reason to rush; that once we got there, they'd just plan to call our doctor and we'd do the c-section around 7:00 that morning as long as everything looked good.

While we got our things together, however, I started having contractions...contractions that were three minutes apart.  I still didn't think much of it; after all, contractions were supposed to be irregular at the start of labor, right?  We got everything (and ourselves) loaded up in the car and took off.  Since we didn't think we were in much of a hurry, my hubby drove 75 the whole way, just five miles over the speed limit.  Meanwhile, I was trying to hold it together and deal with the pain by breathing deeply.  That worked for a while, but my contractions just got stronger and stronger and were definitely closer together...they were two minutes apart and a minute long the entire way.  By the time we were 30 miles away, I was having a hard time dealing with the pain; when we got into town, I was thinking that I would definitely need an epidural if I was going to go through that for a few more hours!

When we arrived at the hospital, we parked in front of the ER entrance and grabbed my file folder of paperwork out of the car.  Apparently, the triage nurse could clearly tell I was in active labor, because we were admitted instantly and taken up to the labor and delivery floor (fastest ER visit I've ever had!).  Once we got to a L&D room, the nurses started prepping me for surgery and asking me a million questions.  I was in A LOT of pain, and the nurse starting my IV had to keep reminding me to breathe deeply.  They were debating on whether or not to check me to see how much I was dilated, but decided since I'd be having a c-section there wasn't any need.  Right after that conclusion, however, I started to feel some pressure.  Once I told them that, one of the nurses did a cervical exam and announced that I was complete...as in, completely dilated, all 10cm!  (Oh, and she was still breech...which turned out to be a blessing in disguise, because if she'd been head down, she probably would have been born on the road somewhere between home and the hospital!)  At that point, things started moving a lot quicker (and they told me not to push), but I still had to sign more paperwork before they took us back to the operating room...I'm pretty sure my signature was unrecognizable as my own, but I was in so much shock at how quickly everything had progressed that I honestly didn't care!  I just couldn't believe that I'd progressed from 0-60 (relatively speaking, not literally of course!) in just a couple of hours, especially since first labors are supposed to be much longer, on average...Then again, nothing about me ever seems to fall on the "normal" side of things =)  Either way, it explained why I was in so much pain...which, I'll admit, did give me a certain sense of accomplishment since I wasn't sure if I'd be able to handle labor without medication!

Once we got back to the OR, they transferred me to the operating table and quickly shaved me and got everything prepped for the c-section.  Luckily, the anesthesiologist was waiting, so between (super painful) contractions, he did his thing.  (The spinal, by the way, was a breeze...I've had insulin pump sites that were more painful, although I'm sure it seemed a lot less so in comparison to my contractions!)  I was then able to lay down, and felt one more contraction before everything from the waist down went gloriously numb.  Meanwhile, my hubby was scrubbing in for the delivery.  He had planned to watch the c-section, but after everything had gone so quickly, he just wanted to be by my side through it all.  The nurses in the delivery room were joking that they'd have to teach him to deliver babies for our next children, since they always say subsequent labors go faster than the first--yikes!

Up to that point, I'd been wearing my pump and CGM and had been checking my blood sugar every so often so I'd know where I was.  Since I had been consistently around 110 throughout labor, I wasn't worried at all about my blood sugar during surgery; however, things in that respect unfortunately didn't exactly go as planned.  My doctor had given me the go-ahead to keep my pump on throughout the whole process and my CDE was going to be on site in case the anesthesiologist had any questions or problems with it, but since neither of them were there at 5:00 in the morning, I was left to hash out the details with them myself.  The anesthesiologist, though very, very nice and wonderful at his job, didn't like the idea of keeping my pump hooked up, so I had to take it off.  By the time I was in recovery, I think my blood sugar was around 140 (if I remember correctly).  Due to that fact, our sweet little girl's blood sugar was low upon her arrival into the world, something I never thought we'd have to deal with since my control had been so good through the entire pregnancy.

Other than that, however, we were incredibly blessed to have a perfectly healthy baby girl!  My husband got to watch them examine her while they stitched me up, and even got to have her little feet stamped on his disposable scrub shirt...he is so proud of that keepsake!  After they cleaned her up, I got to see and kiss her before they took her to the nursery and wheeled me to the recovery room.  They eventually brought her to me in there to breastfeed in an attempt to raise her blood sugar, but ended up having to give her some formula to do the trick.  For the first 24 hours, they checked her blood sugar each time I fed her and had orders to give her an ounce of formula if it was low again; luckily, however, we never had to do that.

The first two nights, my blood sugar was running so low that I set a zero basal rate and stayed around 100.  It's amazing how much easier my blood sugar has been to manage since delivery, other than the fact that I've had plenty of lows.  I've just tried to stay on top of changing my rates accordingly, and everything has gone relatively smoothly d-wise!

I have plenty more to tell about our new life, but I'll save that for later.  Right now, I'm going to enjoy holding our precious baby girl!