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!
Monday, February 11, 2013
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:
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!
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!
https://www.youtube.com/watch?feature=player_embedded&v=_UvU3wsVmOA
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!
https://www.youtube.com/watch?feature=player_embedded&v=_UvU3wsVmOA
Thursday, October 25, 2012
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! =)
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! =)
Friday, October 5, 2012
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!
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!
Friday, September 7, 2012
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 =)
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 =)
Friday, August 31, 2012
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)
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.
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
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!
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.
 |
| 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:
1500/31=48
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!
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