Friday, August 30, 2013

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!

Wednesday, June 19, 2013

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: (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 =)

Wednesday, March 27, 2013

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!

Wednesday, March 6, 2013

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!

Monday, February 11, 2013

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 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!

Friday, January 11, 2013

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!

Friday, December 21, 2012

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