The Diabetes Learning Curve

The last time I posted anything here was a long two and a half months ago! So, so much has happened in those two months d-wise. I don't even know where to begin!

Most notably, I had my first insulin pump failure in the year and a half that I've been on the pump. I played in the sprinkler with my daughter and niece that afternoon, but mostly avoided the water with my pump clipped to my bikini top. I'm not sure if it got exposed to more water than I realized, or if the preexisting cracks in it allowed more moisture to get in than I expected, but it didn't react well.

That evening I went to a salad supper for a women's group at church, and when I went to bolus for my meal (which luckily wasn't very carb-heavy), my pump wouldn't respond. It got stuck on the Bolus Wizard screen and the buttons weren't functioning. Slight panic ensued on the inside, but I managed to keep my calm. After aimlessly trying all of the buttons, I got a button error message and the pump suspended itself. Fair enough, but it kept beeping and eventually vibrating, then screaming with a more alarming-sounding alarm--which I was assured didn't bother anyone, but made an already stressful situation more tense on my end!

I decided to leave after I finished my salad since I knew I'd be spending some time on the phone with Medtronic's customer service and it was already almost 8PM. I called my sister (who also has T1D) to ask her if I could borrow some of her Lantus until I could get a prescription for it the next day...since I've been on the pump for so long, I didn't even have a current one on file. After picking up some syringes and my Novolog vial at our house, I met her over at my parents'. I spent about an hour on hold with Medtronic since it was a Monday night and they had a higher than normal call volume, but once I got a senior technician on the line, it only took her about five minutes to determine my pump needed to be replaced and place the order for a new (well, factory-refurbished) one, guaranteed to arrive the next day.

After some discussion with my CDE about injection amounts, I was set on the insulin front. I had only been on MDI for about a week and a half when I got my pump, so even though it wasn't something I was used to, it wasn't bad. I actually enjoyed being wire-free (as weird as it felt for a while!) since I hadn't been without my pump for more than an hour in the past year and a half. I joked that I might even go to the water park or the lake since they're not easy to deal with when you have a pump that isn't waterproof, but alas my pump-free time was much more mundane! My new pump did come the next afternoon (impressive since it was after 9PM the night before when the order was placed!), and it waited patiently in its box over the next five days until I decided to reconnect.

My new (to me) pump...clearly a winner.

A couple of things made that experience easier...the fact that my sister also has T1D and had some Lantus for me to "borrow" (since it was in the evening and the pharmacy was closed), and having such an awesome CDE. I wouldn't want to deal with it on a regular (or even semi-regular) basis, but having to have a pump replaced wasn't near the nightmare I'd imagined.

Almost as frustrating, though, was finding out that my A1c was about the same in July as it had been three months before (6.6%). I know that isn't horrible, but I'm a perfectionist and that isn't close enough to perfect (i.e., normal) for me. I suppose that at least I can say that my numbers have been fairly steady and I haven't had many lows, so those are both good things.

In my final bit of big happenings, I forgot my insulin completely on a trip to my in-laws' anniversary celebration last weekend. In the rush of trying to get out the door since we were already getting a late start, I ended up leaving it on the kitchen table. I didn't even realize it until we got everything into the hotel room and it was notably missing. Then I freaked out.

Normally, I have relatively sane reactions to things such as this (case in point: the pump failure incident); however, this was on a completely different level in my mind. First of all, this happened around 11:30 on a Saturday night, meaning my local pharmacy had been closed for five+ hours and wouldn't reopen until Monday, and that my endocrinologist would also be out. Since we'd just driven four hours to get there, the last thing I wanted to do was turn around and go back home, missing the entire reason we ventured over there. I knew I had enough insulin in my pump to last me until about 11:00 the next morning, and that was without eating. The gathering was supposed to happen at noon, so you can see why this would be a problem.

I couldn't even process thoughts I was so angry at myself (and let's face it, at my husband for rushing us out the door earlier in the evening). I couldn't even believe that I could forget something so essential, especially since I'm always so careful to pack it. Plus, my blood sugar was in the high 300s because my tubing had somehow disconnected itself getting in the car after we ate supper, and I didn't realize it until a couple of hours and several wasted units of insulin later. To put it nicely, it was a crap storm.

I went downstairs to the car to look for my insulated bag again, but unfortunately it didn't magically appear. I then called my mom and explained to her what was going on, and she told me that she and my dad would bring it to me in the morning. I loved them for being willing to do it, but I also felt incredibly bad about the thought of them driving four hours because of my stupid mistake.

Finally, a stroke of brilliance (/common sense?): I could call my endo's office and see if their answering service was there. After all, what did I have to lose? The worst they could tell me was "Sorry, you're out of luck." To my surprise, they answered after just one ring. When I explained my situation, the receptionist put me straight through to the doctor on call. The endocrinologist that answered asked me for the usual identification information, then for the name and number of the pharmacy I needed it filled at.

In my non-thinking frustration-induced stupor, I didn't even think about having that ready. I scrambled to find the ever-present phone book in the hotel room, but no dice. I finally asked her if I could call her back, and even though I could tell she was frustrated, she said to go ahead. It took me a while to find the number of the local Walmart pharmacy, but I finally succeeded. I called the after-hours number back, and talked to the DOC again. She told me she'd call it in then. I looked up the pharmacy hours and found out they opened at 11:00am...perfect timing, right? I did have to wait 30 minutes for the Walmart pharmacy to fill my prescription the next morning since I'd never filled one there before, but I'm definitely not complaining!

All in all, the past couple of months have definitely taught me a lot about diabetes emergencies. I learned that no amount of water is good for a non-waterproof pump, and that you should always-always!-make sure you've packed your insulin. However, I'm also going to have my regular prescription sent to Walmart just in case it ever happens again...which, considering my luck, is entirely possible!

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!

Everything Works Out With Time

In my last post, I talked about my decision to try and make working from home work for all parties involved.  I'm SO glad to say that I've been doing exactly that for the past couple of weeks, and it's been great. Not only can Baby Girl play without me having to worry (as much!) about her getting into stuff; I feel like I can focus on work better because I'm not worried about everything that isn't getting done at home! And most importantly, my blood sugars have been much better since I made the change. The first week and a half or so, my average dropped about 10 points!

I still get dressed in the morning, because I figured out when I had my daughter that I just feel better if I don't stay in my PJs all day. It also makes it easier when I do need to go run an errand, or meet my mom for lunch! I feel like I've stayed on top of the housework better, because I can throw a load of laundry in the washer in between doing other things. I haven't spent much time just relaxing, or watching TV, or anything of that sort, but I'm less stressed just knowing I'm at home.

One of the most awesome changes this has all lead to is that I've started to get moving again! I had been working out consistently until about two weeks before Christmas, when my daughter got an ear infection and was running fevers of 105°+. After that, and with the usual holiday stuff, I just kind of stopped. Working out is a habit that is so incredibly hard to start and so, so easy to quit. I also have a bad habit of thinking in terms of "Well, I can't actually go for a run (because my blood sugar might go too low, or I'm not wearing the right clothes/shoes, or whatever, so I'm just not going to do anything." Big mistake, by the way. Something is always better than nothing, even if it's just a little something.

Going for a walk in the afternoon is great for both me and the baby (toddler? Oh my goodness!). It's nice to get some fresh air after being cooped up in the house, and Baby Girl enjoys that just as much, or maybe even more than me. She loves being out of the house and watching all of the cars and animals go by. Yesterday we walked by a pasture with some cattle grazing in it, and they got spooked by our stroller. She loved watching them run around! And whenever she sees a dog, she goes, "Ooof, ooof!" (Although every animal says "Ooof" according to her!)

I'm hoping that this will all be a step towards losing those last ten pounds and just being healthier in general. I know it can't hurt! It's funny, though, because I still feel like I'm on an extended vacation or something. Or like I'm "playing house", pretending to be a stay-at-home mom! I suppose I'm technically almost there, because I'm officially a work-at-home mom now =) Bottom line: I'm so, so glad things are starting to go my way and that maybe, just maybe, life will be a little easier and better as a result!

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!

Update Time!

Wow, I've been out of the blogosphere for a while now...I didn't realize that it's been almost two months since I last posted anything! My husband has been working out of state since mid-October...coincidence? I think not. The last couple of months have been super busy, and I don't think I've even had a chance to think very critically about anything during that time. Nevertheless, I do have some updates to share!

First of all, I went back to see my neurologist last month for a follow-up on my Chiari issues. I was to the point that I had all but decided to go ahead with surgery due to the fact that my more annoying symptoms hadn't gone away, but luckily he helped me evaluate my options more objectively. We came to the conclusion that we'd "wait and see" for a few more months since things hadn't gotten worse, and some aspects had, in fact, gotten better. After all, surgery itself presents other issues, the main one being that I would be pretty incapacitated for a couple of months...which is an issue when you have an almost-11-month-old to take care of! Because I'm no longer breastfeeding (since I started taking anxiety medication), he thought muscle relaxers would be a good option to try for my neck/back of head weakness. So far, it seems like they're helping quite a bit. I still have days when I feel much worse than others, but it's an improvement. I'm still holding onto hope that it will all go away completely again, but at this point (six months in) it's stuck around a lot longer than my past flare-ups.

My blood sugar numbers have been slowwwwwly improving. I still have a lot of (seemingly) inexplicable highs and lows, but as always it's a matter of day to day (or hour to hour) adjustment. My latest at-home A1c test showed 6.5%, so I'm hoping it's even lower than that...last time it showed 6.9% and the lab test came back 6.4%. Either way, I'm just glad things are better.

As of my last post, I still wasn't working out consistently, but I'm happy to say that has finally changed. I've been recording Faithful Workouts on DirecTV (NRB Network), and it's been great. Not only is it faith-based and therefore very uplifting and encouraging; it's also an awesome workout. At 30 minutes long, they're not too difficult to squeeze in my busy day, and every workout works your entire body. I've been encouraging my mom to start them too, especially because they show adaptations of every move for different fitness levels. They also don't require anything fancy--just some light hand weights, an exercise band, a ball, and a mat. Even so, they give you options to use if you don't have those things as well. Aside from this week (when my baby girl was sick), I've been trying to work out at least 4-5 days each week and have been fairly successful. As the program's founder Michelle Spadafora says, "if you stay faithful to your workouts, you will get stronger!" I've felt much better since I've been working out; not only can I tell a difference in my muscle tone, but everything is also a little easier because I am getting stronger. It's something I've really come to enjoy, and I can honestly say I never regret working out...especially on the days when I least want to.

This new change in my routine has meant further changes to my insulin needs, but that's to be expected. Anytime you do something different, it takes a while for you to balance everything out again. Keeping an open mind and testing frequently has helped a lot. I won't say I've figured it out yet by any means, but I'm not hitting any big lows or highs (from too little insulin) following workouts very often anymore. If I know I'm going to be working out, I just reduce my mealtime bolus by half or more, and along with a temporary reduced basal rate, I usually stay pretty steady.

In other news, I was recently appointed Secretary for our local branch of JDRF! I was hesitant to take on the position when I was first asked since I've been so busy with my husband being gone, but after I was assured it wouldn't take much time I decided to go ahead and accept it. This position also means I'm officially a member of the Executive Committee, so I'll be representing my area (which currently doesn't have a lot of JDRF involvement) in decisions and development. I attended my first board meeting as Secretary last week, and it went very well. I love going to meetings because our board's excitement about the JDRF mission is contagious. Everyone I've met through my contact with the local branch has been amazing, and I'm truly lucky to know them. They are all so dedicated to finding a cure because each has been touched by T1D in one form or another. In the past year that I've been on the board, it's been awesome to see how much they've accomplished and I'm blessed to be a part of it all.

Finally, I wanted to share an exciting development in regards to the Artificial Pancreas Project. Our local JDRF Branch Manager talked with a JDRF staff member undergoing outpatient trials of the APP a couple of weeks ago, and now there's a video up explaining it all. For anyone who has been "out of the loop" (excuse my poor attempt at d-humor), the APP is an amazing new technological development for those of us with T1D. While it's not a cure, it will make our lives better and easier...a little more normal. Like I posted on my Facebook page this morning, normalcy is something you take for granted until it's gone. The hope for the APP is that it will allow technology (an insulin pump and CGM/Continuous Glucose Monitor) to make all of the minute diabetes management decisions for you, eliminating human error and keeping blood glucose numbers closer to normal. Results have been very encouraging thus far, so I'm hoping the FDA approval process goes smoothly and quickly!


Brobson Artificial Pancreas Trial

https://www.youtube.com/watch?feature=player_embedded&v=_UvU3wsVmOA

Results, Anxiety, & The Future

In my last post, I wrote about how frustrated I was with the excruciatingly slow progress I'd seen in my blood sugars since changing my pump settings. More so than the actual results, the lack of control over my numbers is what has bothered me the most.

I had my quarterly appointment with the endocrinologist on Monday, along with my official A1c lab test. Since the at-home tests I'd done in previous months showed 6.8% (in August) and 6.9% (earlier this month), I was fully expecting it to be in that range. I explained everything that had been happening in the past few months to my doctor, but he said as long as it was under 7.0%, it was fine.

When I anxiously opened my results yesterday, however, I was pleasantly surprised to find that it was actually 6.4% (which translates to an estimated average of 132)--and my cholesterol and triglycerides were finally in the normal range, too. Yay!

Like I've mentioned before, I've always been harder on myself than anyone else (my endocrinologist included) is, but I'm usually pretty good at predicting what my A1c will be. This is one time I'm very glad to be wrong!

Even though we're not planning to have another child anytime soon (at least not until Baby Girl is a year old, another three months from now), the thought of the future is always in the back of my mind. The next baby deserves the same start on life as our first had, with all the attention I can possibly give to my health for his/her benefit. Since I have an IUD, we obviously have to consciously plan our next one anyway, but for us my diabetes definitely factors into that as well.

Another thing that has been weighing on me heavily lately is exercise...or rather, my lack of it. I've written several times in the past about working out, most recently in January when I asked my OB about exercising postpartum. Clearly I had on rose-colored glasses back then, because I definitely underestimated how difficult it would be to work in a workout with a full-time job and a baby (and house) to take care of.

My exercise "routine" thus far has been spotty at best. I get on my Gazelle or go for a walk when I have the time, but other than that it is nothing more than a passing thought on my way to do something else that has to be done. I know I need to make it a priority (especially as the future becomes more of a reality rather than a distant possibility), but it's just so hard.

Since my Chiari stuff started back in June, I've been having anxiety attacks on and off in the evenings. I would lay awake in bed trying to go to sleep, but I just couldn't shake the panic I got with that "about to pass out" feeling (though I never actually did check out). It got so bad that I'd get up and sit in the living room in the middle of the night trying to decide whether or not to go the ER because I was afraid I was actually having a heart attack. I'd eventually convince myself it was "just" anxiety, but that doesn't make the feeling any less real.

Earlier this month, my husband went out of town for business. The first week he was gone, I finally decided I couldn't take it anymore and made an appointment to get some anxiety medication. The decision to do so was extremely difficult for me because I knew it would mean I would have to stop breastfeeding (SNRIs have not been studied like SSRIs have in regards to breastfeeding), and even though Baby Girl was 8-1/2 months old at the time and down to one morning feeding, I had planned to continue nursing until she was a year old. After some discussion with the doctors and a call to my husband, I decided that our baby having a calmer, happier mom was more beneficial. And, like my husband said, she would be getting teeth soon anyway...little did we know, her first one would pop up less than a week later!

I've been on the medication now for two weeks and I can tell it's making a difference. I still had that anxious feeling quite a bit for a while, but it was definitely more manageable than before. Overall, I'm a lot less "on edge" and more positive about things, so life has been better in general. I'm hoping that now that I'm back on track mentally and emotionally, I can focus on getting there physically too. Maybe I can even lose those last 10 lbs! =)

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 =)

Back to Basics

First off, an update on my last post...I had my appointment with the neurosurgeon last Friday, and it went fine. He said that all of my symptoms were, in fact, due to my Chiari Malformation and that we had two options in regards to treatment. First, we could consider surgery (an option I wasn't a huge fan of due to the extensive recovery required), or we could simply wait and see if my symptoms got better. He was thinking that the vascular changes during the pregnancy and postpartum period may be causing more congestion in the craniocervical area and further compressing my cerebellum and spinal cord. In theory, then, once my body returns to "normal" at the end of the postpartum period (around a year after birth), my symptoms might be alleviated...fingers crossed!

Oh, and the T2 hyperintensity mentioned on my MRI report? He called it a UBO--Unidentified Bright Object! Thankfully, he said that I didn't have any symptoms of MS or any other neurological disorder, so he said for all intents and purposes we could consider it a fluke. He'll probably order another MRI in January to make sure that's the case, but I was satisfied with his explanation.

My next appointment with the NS to re-evaluate the situation is at the end of November. It seems like I've felt slightly better since the weather has cooled down a bit, but some days are still very difficult. Since I'm still breastfeeding, he couldn't give me anything for my dizziness or neck weakness, but he did say that massage might help. I haven't had a chance to call the one we have in town, but it's on my (never-ending) to-do list. He also said it was fine for me to start running again--I had stopped when all of this started because I was afraid of passing out. As long as I start slow and wait until it's a little cooler, the NS thought I would be fine.

Now that we've established that my symptoms are due to Chiari, maybe I can get a better handle on my blood sugar numbers again. I've been running higher than normal in order to (almost) eliminate the possibility of a low causing my sudden dizzy spells. Of course, with the way I've been feeling it's still hard to tell, so I've been testing A LOT more often...as in around 20 times/day instead of 10 or less. Not so budget-friendly, by the way--I've had to order a couple hundred extra test strips out of pocket in the past two months just to have a big enough supply. Thank goodness for Amazon!

My last official A1c was 5.5%, but I'm betting that my next one will be quite a bit higher. I'm hoping, though, that I can get things back on track and get my numbers back into the normal range where I like them.

To that effect, I decided to re-configure my basal/bolus rates for my pump. Of course, there are various methods and opinions on how to go about this, but I decided that it couldn't hurt to start back at the basics and work from there. It goes without saying (at least I think) that I'm not here to provide medical advice. As always, YMMV...what works for me may not work for you, and vice versa.

For the past week, I've used an average of 26 units/day, with 59% going to basal. It seems like it's best for me to have around 60% of my TDD as basal and the other 40% as bolus, but anywhere between the 50/50 and 60/40 range works fine. Given that my numbers are at least 20% higher than I'd like, I decided to increase my TDD to 31u/day (19% above what I'd been using). So:

31*0.60=18.6u total basal
18.6/24hrs=0.775u/hr basal rate

Since I'm still in the experimental mode for the time being, I decided to make that 0.75u/hr for simplicity's sake--which would mean 0.75u/hr*24hrs=18u total basal (58% of TDD)

I haven't had only one basal rate since I started using my pump, but I figure that you have to start somewhere! With the new rate, I can watch for patterns in my numbers and then adjust my rate accordingly.

Currently, I've been having a lot of correction boluses for highs...entirely too many for my liking. Since I've established that, I decided it wouldn't hurt to tweak my carb ratio too. Going on the 450/TDD=carbohydrate-to-insulin ratio (CIR) formula, that means my calculated ratio is 14.5grams/unit, rounded to 14. My pump was already set to a carb ratio of 15:1, but I've been dialing down the estimates a lot due to my recent fear of lows. Note to self: Stop. Trust the Bolus Wizard.

My nifty cartoon of how I envision the Bolus Wizard on the Medtronic Pump...

Next, Insulin Sensitivity Factor (or Correction Factor) is calculated by dividing anywhere from 1500 to 1800 by the TDD. The higher the top number, the more conservative the correction factor:

1800/31=58
1500/31=48

Since my previous ISF was set at 57, I decided to pick a number halfway between (53) until I know how it's all going to work. Hopefully I won't have to use it as often with my new settings!

Now I guess it's just a matter of testing, reviewing patterns, and adjusting everything accordingly. If everything goes well, I'm hoping that I can be back in the normal (or at least closer to normal) range before long!

I'm Just A Little "Off" In The Head...

It's been almost a month since my last post, and I have to say it's been an eventful one...and not in a good way. Things have been better on the D-front since I changed my basal rates, but my average is still running higher than I'd like. I'm ready to have my numbers closer to normal again, but first I have to get some other health-related stuff taken care of. Until then, I've had to keep my numbers up to avoid lows so that I have one less thing to worry about and so that factor is (almost) eliminated while I continue to feel "off".

About a month and a half ago, I wrote about an experience I had while I was doing some shopping at Target.  At the time, I thought it was another bad low; later, I attributed it to sinus pressure. However, since then things have just spiraled downward and I've realized that this time at least, diabetes isn't the cause of my problems.

What I believe is causing my dizziness and near-fainting episodes is a condition I was diagnosed with six years ago called a Chiari I Malformation. It's pretty rare (0.1-0.5% prevalence rate), so the fact that I have it and T1D (0.001 to 0.02%) further reinforces the fact that I'm a statistical anomaly (that's a 0.0001-0.01% chance of having both, by the way...yes, I'm a nerd). According to the National Institute of Neurological Disorders and Stroke:

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. 

That pretty much sums it up. I've had all of those problems lately (and more), and it isn't fun. The problem is, the symptoms that Chiari causes can also mimic a lot of other diseases, so you have to first rule everything else out before you can attribute problems to CM. A while after I was first diagnosed, my symptoms basically disappeared for another few years and then resurfaced while I was in college. I had another MRI then, and it was confirmed that all that was there was the CM.  Once again, I was asymptomatic until this June, when it hit me like a ton of bricks. I had an MRI done on July 25th (the day after my 24th birthday), and aside from the Chiari, this is what my results said: 

There is increased T2 signal in the sulci of both posterior cerebral hemispheres in the flair sequence of indeterminate clinical significance. Consider obtaining lumbar puncture with analysis of CSF versus CT head to exclude blood products. This can also be seen with proteinaceous material as well. There is no abnormal enhancement in the corresponding sulci with IV contrast administration.

At first, all that came up on Google regarding the T2 hyperintensity was MS. However, after some more digging, I've found that it can also be caused by abnormal blood/oxygen flow...and since it's confined to the back of my head, I'm going to go with the assumption that it's Chiari-related. I'm scheduled to see a neurosurgeon on August 24th, and that appointment can't get here fast enough. Much to my dismay, the only treatment for CM is decompression surgery where they go in and remove part of your skull to create more room and fix the overcrowding issue. It's either that or the "wait and see" approach in which symptoms and MRIs are observed on a regular basis; however, sometimes, the nerve damage caused by CM can become permanent the longer you wait to fix it.

I know I'm jumping the gun by assuming all this is caused by Chiari and that I may very well have to have surgery; however, I'd rather know what I'm up against ahead of time so I can prepare for it. I've been reading up more on Chiari itself as well as on its statistics, surgery, and outcomes so that hopefully I can be an informed patient when I see the NS.

My mom also has CM, but I haven't met many more people with it until recently. The daughter of a friend I know through the JDRF had decompression surgery this morning, and another JDRF board member went through it in the past. When I posted something about it on Facebook, my junior high basketball coach/history teacher told me he had the surgery in January and has been doing great since. Incidentally, both he and the girl who had surgery this morning see the same NS that I'll be going to see. I asked around before scheduling an appointment because this is one of those situations where you definitely want the best, and I've heard great things about this particular doctor.

The concept of brain surgery (even though it's a relatively simple one) freaks me out. Not only that, but I have an almost-seven-month-old to take care of, and aside from a little outside help, I'm in charge of 90% of her care 24/7. Decompression surgery takes several months to completely heal from (in the ideal situation), and I'd definitely be down (literally) for at least a couple of weeks before I'd be able to do much of anything. The idea of not being able to take care of my daughter is worse than anything else, because I can't imagine missing out on that time; however, as someone pointed out to me the other day, I have to take care of myself in order to be able to take care of her.

Right now, I have a hard time doing the simplest things, from just making it through the work day (my neck feels like it can't support my head by the afternoon) to putting cereal in my baby girl's bottles (my fine motor functions are a bit...off lately). I even have trouble recalling words, which is completely out of character for me. I also frequently suffer from muscle weakness in my arms and sometimes my legs, and often feel like I'm in a mental fog or having an almost out-of-body feeling. Most days, I'm reluctant to drive further than work and back because of the dizziness. I hate going anywhere by myself because I'm afraid of the passing-out feeling that I get several times a week now. It has also been difficult to lose those last few (15) pregnancy pounds because I haven't been able to return to running due to the same fear.

Clearly this is adversely affecting my life, and at this point, I'm thinking that if the NS thinks things would improve with surgery, I would seriously consider it. Here's to hoping the next couple of weeks go by quickly so I can get some answers!

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...

I'll Take "Rude Comments" for $500...

In my previous post, I wrote about my latest blood sugar emergency and the judgment I faced from a store employee during my low. I don't know what it is about diabetes, but for some reason it makes people feel like they have license to comment on your health.  I realize that most people know someone with diabetes, but it's still a very misunderstood illness, so most of what people think they know about the disease just isn't accurate.

I've experienced judgment, both outright and unspoken, due to my diabetes countless times since my diagnosis in 2010. Usually, you can read it in people's expressions as they eye what you're eating/doing, but sometimes others are more outspoken in regards to many aspects of your life, all because you have a disease you never asked for. Sometimes, like the Target employee I had to deal with recently, people will even imply-or tell you in no uncertain terms-that it's your "fault" that you have this disease, regardless of the fact that T1 is unrelated to lifestyle choices and can affect anyone indiscriminate of age, weight, or diet. I realize that the majority of these people confuse T1 with T2, which is more tied to poor lifestyle decisions (though you don't have to be overweight to get T2, and even someone who is 500 lbs and doesn't exercise won't develop it if they don't have the gene), but even so, what gives them the right to comment on someone else's health? They wouldn't admonish someone for having breast cancer, for example. I don't know about you, but when someone says they have breast cancer, I'm not inclined to tell them that they should have lived their life differently.

[[On a related note, check out this post on Diabetes Daily about the rude remarks we receive due to having diabetes (be sure to read the comment section). It's shocking to me that people can be so blatantly hurtful when it comes to this disease...even though 99% of what they say is based on incorrect myths, it's still hard to face in the moment.]]

Recently, I've encountered a lot of questions about my ability to have children. One instance was at a family reunion a few weeks ago (the same one where I had to use glucagon for the first time), when an older relative asked me (with a very serious expression on her face) how I was doing and if I'd be able to have more children since I have diabetes. Even though I've dealt with these questions before, it never ceases to amaze me (a) how uneducated people are about diabetes (hello, this isn't the Diabetes Dark Ages of the Steel Magnolia era!) and (b) how open people are with their judgment of your life decisions when you have this disease. Yes, I can (and did!) have a perfectly healthy pregnancy and baby despite my diabetes, as long as I keep my health and blood sugars in check before and during the nine months of baby creation.

ecards...they say everything you can't say to someone's face.

Because I choose to devote myself to advocacy and outreach for T1, I make sure to at least try and educate people in these instances, because if I don't, they may never get correct information. If I can change someone's ideas about this disease, hopefully the next person they encounter with T1 won't have to deal with the judgment and rudeness I regularly experience.

A couple of weeks after the reunion, my mom and I were at a sandwich shop for lunch when a lady that goes to church with my dad commented (while I was holding my sweet baby, nonetheless), "Oh, I didn't know you had a baby...I didn't think you could because of your diabetes." Even though I have pretty thick skin when it comes to this stuff, I'm still hurt by the implication that I shouldn't have children, especially since I worked so hard before and during my pregnancy to keep my blood sugars in a normal person's (without diabetes) normal range and have no complications related to the disease. Even with the stresses of new motherhood, my latest A1c was 5.5%, well within the normal person's normal of 4.0-6.0%...Therefore, my blood sugar average is actually better than some people who don't have diabetes.

Even though the JDRF and other diabetes advocates are working to change the perception of the disease in the public eye, we still obviously have a lot of work to do. There are times when I want to tell people, "Excuse me, but don't you think I know more about a disease that I live with 24/7 than you ever will?"...but I don't, because that would make me (almost) as rude as they are. Please don't misunderstand-I never harbor bad feelings toward anyone who is truly interested in learning more about the disease; I only take offense when it's obvious that someone is judging my decisions without the medical knowledge (or even basic common sense/courtesy) to do so! Unfortunately, those of us who manage all of the challenges that T1 comes with also have to deal with others' misconceived notions of the disease on a regular basis, so all we can do is take the time to try and educate other people when the opportunity arises. I just hope that by the time the kiddos with T1 are grown ups, they won't have to justify their ability to have children-or whatever else they want to do. In the meanwhile, I'm trying to make sure that they have to deal with this discrimination as little as possible!

(Off) Target...& Under Attack

Two weeks ago, I wrote about my first experience with glucagon. In it, I said that although I was very glad I had access to the emergency injection, I hoped I wouldn't have to use it again anytime in the near future...well, it turns out that although I didn't have to use it at all during the first year and a half since my diagnosis, I've had to use it twice now within a month. I'm not usually one for cussing, general pessimism, or texting acronyms, but this is one time I have to say WTH/FML!

It started yesterday afternoon while I was grabbing a few things at Target. My mom was waiting in the car with my sweet baby, feeding her bottle to her. I was about ready to check out when I started feeling very, very faint-like I could pass out at any moment. I'd taken a few glucose tabs a few minutes before because I could feel a low coming on, but when I checked my BG at the front of the store, it was 69...so really not that low, relatively speaking. I couldn't shake the faintness, though, so I figured I must have been dropping fast or something...thanks to my lovely luck, my CGM sensor had just timed out that morning, so I had no way of knowing for sure.

I grabbed a Coke from the fridge, but even after downing most of it I felt like I was going to hit the floor at any moment. In the meanwhile, my mom had texted me that the baby was "making me a present." I texted her back "SOS." Since I was by myself, I stopped an employee and told her that my blood sugar was low and that I was going to give myself an injection to help bring it up...but that if I passed out, to call an ambulance. I mixed up the glucagon and injected it through my jeans into my thigh, then texted my mom again to let her know what was going on. She asked if I needed her to come in, and I said yes...she told me later she didn't know that I needed help when I sent my SOS-she thought I was referring to the little one's diaper situation! When I checked my blood sugar again, it was 82...but I still felt extremely faint. Through all of this, the employee that I had talked to kept checking on me to ensure that I was okay, making sure to keep me in sight until my mom got in the store. By then, my blood sugar was up to 103, but I just couldn't get rid of that dizzy feeling.

My mom took my debit card and went to check my stuff out while I sat on the end of the next lane where they place checked bags. The lady who was running the register in my mom's lane echoed my mom's orders to stay seated until they were sure I was okay, but then followed with, "I kind of feel sorry for you, but then again I kind of don't since you brought this on yourself." At first, I wasn't sure I heard her right, but then she went on to say that her mom has diabetes and eats sweets, then complains of feeling bad. She said she doesn't feel sorry for her then. Even in my sucky, just-about-to-hit-the-floor state, I explained to her that she was referring to high blood sugar, and mine was low right then-that I had too much insulin in my system and I needed sugar to bring things back up. At that point, she told me that one of the other Target employees also had an insulin pump, that she "had to push some buttons sometimes" (Ha!) and that they have to keep an eye on her. My mom told her I took good care of myself, and I informed her that mine was T1 diabetes, an autoimmune disease. Still, you could tell that she was one of those people that just wouldn't "get it", no matter how much you try to explain things, so I gave up. A lady in line behind my mom told me she was diabetic too, and that she knew how much lows sucked...thank you, person who actually knows what's going on.

I found everything I wanted, plus an ignorant employee.

Later, I couldn't believe the employee's audacity. There I was dealing with a blood sugar emergency, and she was lecturing me about how it was my "fault" that I felt that way...seriously, how much ruder can you get? I know that a lot of cases of T2 can be prevented or improved through lifestyle changes, but lifestyle choices have nothing to do with T1. Unfortunately, most people don't know the difference between the two, so we're left to deal with the rude comments and outright judgement of our health. I'm planning on calling or writing the store's manager, not to seek punishment for the employee in question, but to make sure than any other customer with T1 (or T2, or any other health condition) can get the care they need in an emergency without also having to deal with someone's judgmental attitude.

We went ahead and finished up, then went out to the car to change Baby Girl. By that time, my blood sugar was in the low 200s...and still, I felt horrible. We started to head out of town, but I told Mom that I didn't feel comfortable riding the hour and a half home with the way that I was feeling. She turned around and headed back toward the hospital. She called my endocrinologist's office, but he was out of town until next week, so we went to the ER.

After a few hours of waiting, blood work, some fluids and an EKG, they released me with a diagnosis of blood sugar fluctuations combined with the heat. All of my labs were fine, so that made me feel a little better even though I still had a faint feeling. My blood sugar peaked at 405, but came down without issue. By the time we got home, it dawned on me that my dizziness was probably actually from the sinus pressure I've been having in my head lately. Since I'm breastfeeding, there isn't much I can take that won't affect my supply, so the nurse at my OB's office told me to try Sudafed with some Tylenol. It still may cause a drop in milk production, but I can't stand feeling lightheaded any longer.

I've felt pretty bad today, but I've stuck it out at work even though I should be home resting because my dad/boss is out of the office. I think I'll head home early, though, because I have lots of work to catch up on at home too, and let's face it-there isn't anyone else to do it for me! Even though I later realized that what I was feeling probably wasn't a low (after the fact, of course), I'm still thankful for glucagon because it gives you some power over one of the not-so-great effects of this disease...even if you're sometimes powerless over the way people treat you because of it.