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

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

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

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

1800/31=58
1500/31=48
Since my previous ISF was set at 57, I decided to pick a number halfway between (53) until I know how it's all going to work. Hopefully I won't have to use it as often with my new settings!

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

Monday, August 13, 2012

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

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



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

What I believe is causing my dizziness and near-fainting episodes is a condition I was diagnosed with six years ago called a Chiari I Malformation. It's pretty rare (0.1-0.5% prevalence rate), so the fact that I have it and T1D (0.001 to 0.02%) further reinforces the fact that I'm a statistical anomaly (that's a 0.0001-0.01% chance of having both, by the way...yes, I'm a nerd). According to the National Institute of Neurological Disorders and Stroke:
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. 
That pretty much sums it up. I've had all of those problems lately (and more), and it isn't fun. The problem is, the symptoms that Chiari causes can also mimic a lot of other diseases, so you have to first rule everything else out before you can attribute problems to CM. A while after I was first diagnosed, my symptoms basically disappeared for another few years and then resurfaced while I was in college. I had another MRI then, and it was confirmed that all that was there was the CM.  Once again, I was asymptomatic until this June, when it hit me like a ton of bricks. I had an MRI done on July 25th (the day after my 24th birthday), and aside from the Chiari, this is what my results said: 
There is increased T2 signal in the sulci of both posterior cerebral hemispheres in the flair sequence of indeterminate clinical significance. Consider obtaining lumbar puncture with analysis of CSF versus CT head to exclude blood products. This can also be seen with proteinaceous material as well. There is no abnormal enhancement in the corresponding sulci with IV contrast administration.
At first, all that came up on Google regarding the T2 hyperintensity was MS. However, after some more digging, I've found that it can also be caused by abnormal blood/oxygen flow...and since it's confined to the back of my head, I'm going to go with the assumption that it's Chiari-related. I'm scheduled to see a neurosurgeon on August 24th, and that appointment can't get here fast enough. Much to my dismay, the only treatment for CM is decompression surgery where they go in and remove part of your skull to create more room and fix the overcrowding issue. It's either that or the "wait and see" approach in which symptoms and MRIs are observed on a regular basis; however, sometimes, the nerve damage caused by CM can become permanent the longer you wait to fix it.

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

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

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

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

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

Wednesday, July 11, 2012

The Grass Is Always Greener

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

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

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

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

During my first American Diabetes Month back in 2010, I wrote about how health care issues affect people with diabetes, and me specifically. I correctly predicted back then that my dream of staying at home once we had children wouldn't be possible due to my need for insurance. This adds an entirely new level of suckiness (yes, I'm making it a word) to an already sucky disease...not only do we have to suffer from the disease itself, but we also have to quite literally pay for having it. Let me break it down for you:
  • Test strips--$1/piece; at the current rate I'm using them, $300/month or $3,600/year without insurance; $60/month or $720/year with it.
  • Insulin pump supplies (reservoirs and infusion sets only)--$652/3 months or $2,608/year without insurance; $492.80/3 months or $1,971.20/year with...Before the maternity costs of last year, I never meet my $3,000 deductible. Because of that, I never get my supplies covered under the 80/20 plan, and have to pay them at the contracted insurance rate instead. But hey, at least I get that 20% insurance discount...
  • CGM Sensors--$420/3 months or $1,680/year without insurance; $327.90/3 months or $1,311.60/year with...although I don't use sensors all the time, partly because I don't feel I need to wear them 24/7 and need a break from the skin wreckage caused by the adhesives from the bandaids I wear to cover them, and partly because not wearing them all the time means I can stretch my supplies out longer.
  • Endocrinologist visits--$473/quarterly or $1,892 without insurance; $50 copay or $200/year with.
That comes out to $9,780 without insurance or $4,202.80 with for strictly diabetes-related medical costs, which of course is not including premiums, glucose tablets, or other miscellaneous expenses that I incur thanks to this disease.

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

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

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

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


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

Monday, July 9, 2012

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

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

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

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

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

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

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

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

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

Wednesday, June 27, 2012

(Off) Target...& Under Attack

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

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

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

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

I found everything I wanted, plus an ignorant employee.

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

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

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

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

Tuesday, June 12, 2012

Adventures With Glucagon

This weekend, we went to my family's annual reunion, which is held about 80 miles away from where we live.  We had a great time catching up with everyone, even though it passed by too quickly! My husband suggested we should get together twice a year instead of just once, which is an amazing statement to make of your in-laws =)

One thing that wasn't so much fun, though, was having the worst low I've ever experienced since my diagnosis. I don't know what it is about short weekends away and alcohol, but I tend to forget about the effect it has on my blood sugar. Back in April when we traveled a couple of hours for the annual benefit gala for the local branch of the JDRF, I uncharacteristically indulged in a couple of glasses of wine, only to find myself battling a low in the middle of the night that I was luckily able to fix with a granola bar and some of my husband's sweet tea. This time, it was two beers...normally, I only have one-if I even drink at all. Sometimes, depending on the source of alcohol, it even raises my blood sugar and I end up with a high to deal with.

Saturday night, though, all the factors that influence blood sugar must have come together and conspired against me (and any hope of sleeping), because when I went to bed, I was at 125. Luckily, I didn't give myself the correction I considered...sometimes if I'm in that range before bed, I wake up around 100 when I'd rather be closer to 80. Yes, I'm a perfectionist. Anyway, the baby and I went to bed and slept fine until my husband came in a couple of hours later after staying to visit a little longer with my family. When I woke up then, I knew I was low, so I got up to check my BS. It was in the low 40s, so I grabbed the granola bar I keep in my purse for such occasions and ate it. 15 minutes later, I was still in the 40s, so I added 16mg of glucose tablets to the mix. 15 minutes later, I was just over 50, and had no more sugar left in the hotel room. I knew I could call my parents to steal a snack from them (even though it was around 3:00 in the morning), but at that point I realized my BS wasn't coming up as quickly as it normally does, and that I better do something to ensure I would wake up in the morning. I've never had to use glucagon before, but I remembered reading a post over at Typical Type 1 in which Jacquie recounts her night with a little too much alcohol and having to resort to the dreaded emergency injection.

Figuring my only option at that point consisted of that little red box, I told my husband what I was going to do so he would watch out for me while I got everything ready. I knew theoretically how to use it (and the pictures are pretty self-explanatory), but I did a cursory glance of the instructions just to be on the safe side. Possible vomiting, nausea for up to 12 hours afterwards...perfect. But I figured that didn't compare to the mounting fear of a life-threatening low I was currently experiencing, so that was that. I mixed up the vial, drew it up, and injected it into my thigh. I waited around, re-read Jacquie's post about her glucagon experience on my iPhone, then noticed in the comments section something about it not working as well with alcohol in your system. Great. But since it worked for Jacquie, I hoped it would do the job. When I checked my BS a little while later, I was at 78, then high-80s, then around 115.  At that point, I felt comfortable enough with the fact that it was working to get some rest, but I set my alarm for an hour later to be on the safe side...I guess it goes without saying that I had a zero-basal rate set through all of this. When I woke up when my alarm went of an entirely too short of a time later, I was hovering in the 180s. A couple of hours later, I peaked at 196, and since I was going to have to get up an hour after that, I went ahead and started correcting the high. When I woke up (an hour later than I'd originally planned) I was back down to 156, and with another small correction I returned to 91 before breakfast. At least I never had any nausea or vomiting, and I didn't feel too bad following the injection.

After eating breakfast, though, I quickly noticed that my blood sugar wasn't rising like it should from the food, so I set another zero-basal and took a couple of glucose tablets to be on the safe side. At the post-prandial check, I was around 80, so I had a feeling I'd be battling a low for the rest of the day-and I was right. At lunchtime on the way home, I thought I under-shot my insulin enough to stay in the black, but that postprandial was pretty much the same as before...and ditto with supper.

I don't know what's going on with my body, but apparently I'm becoming more insulin sensitive, at least over the past couple of days anyway. I know that the Saturday night low was due to the alcohol, but I'm not sure why I've had trouble keeping my BS up long after the effects of the alcohol should have worn off. I also know it's not from weight change, because if anything I've gained a couple of pounds from the stress of working with a baby. Also, I've only had these consistent lows over the past few days...before that, my numbers were in the normal or slightly-higher-than-normal range. I've been checking my blood sugar even more often since then, just to be on the safe side and keep a good eye on them. The pump has been extremely useful throughout all of this too, because I always have the zero-basal rate option to use.

Bottom line, I'm extremely glad I had the glucagon with me, because I don't know what I'd have done without it. That moment is the reason I always carry one in my purse, because I always have it close by then. I went to the pharmacy yesterday and had my prescription refilled because I didnt want to tempt fate and be without it!

More than anything, this experience has shaken me to the core. It's the scariest d-related incident I've had since my diagnosis and one I hope I don't have to deal with again anytime soon. I'm terrified of what this disease is capable of, both from highs and lows. At least the highs don't put you in immediate danger, though, and they don't leave you shaken and fearful like a bad low does.

I got a jogging stroller so I can start running again in hopes of losing the baby weight, but the prospect of a low like this one happening again makes me realize how important the safety precautions for exercising while on insulin really are as well. I can't risk being unavailable, temporarily or permanently, to my daughter. It's incredibly frustrating, though, to want to lose weight so badly only to have so many d-related obstacles in the way. Lows require more sugar and prevent me from exercising, but at the same time, I feel like I need to be at my ideal weight again in order to be as healthy ad possible. At the same time, I'm not comfortable with allowing my blood sugars to run much higher than normal either. It's such a tough balancing act, and at this point I suppose all I can do is my best, and make sure to follow the insulin safety guidelines to a T.

All I know is that I hope I don't have to use that red box again anytime soon, but I'm extremely grateful to Jacquie and the rest of the DOC for sharing their stories. It's in moments like these when we'd be truly lost without having each other to relate to, someone else out there who's been through the same things-even if they're on the other side of the country! I mentioned in my last post that I started this blog mainly to deal with everything that comes with a T1 diagnosis, but I can only hope that I might also be able to help someone else through sharing my experiences as other DOC members have done for me!

Friday, June 8, 2012

Making Your (Diabetes) Life Better

Back in November, I got an email from a person in marketing at Random House about Chuck Eichten's "The Book of Better: Life With Diabetes Can't Be Perfect. Make It Better." He said he'd like to send me a review copy to check out in hopes of getting the word out about it in the diabetes community after coming across my blog. Needless to say, I was thrilled...Not only do I LOVE books; I also love learning more about how I can make living with this disease a little easier. I was also amazed and honored to know there are actually people out there reading what I write! When I started this blog in November 2010 (a couple of short months after my diagnosis), I did so for some much-needed catharsis...I just wanted to let it all out, regardless of if anyone ended up reading it or not. I figured that if they did, maybe I could help someone else as other d-bloggers have helped me, because it always helps to know that you're not alone in dealing with everything that comes with T1.

Anyway, I promised him I'd read the book as soon as possible, but that since I was pregnant with our first child and dealing with the whole diabetes + pregnancy whirlwind, it would probably be a while before I'd be able to. Fast-forward seven months later, and I was finally able to finish it! It was a fast, easy read; it just took a while to get through it reading it in five-minute chunks while the baby slept (which wasn't very often in the first couple of months!).

The thing that stands out the most about this book is its approach to diabetes. Most books on the subject come off as very clinical--they're straightforward and informative, but dry and impersonal. This book is neither of those things, but still manages to be direct and educational. Not only that; it's filled with funny cartoons, charts, and interesting text, so it easily keeps your attention. Its tone is conversational, so it feels like Mr. Eichten (who has lived with T1 for over 35 years) is standing face-to-face with you, telling you about the ups and downs he's experienced firsthand with the disease. He somehow simultaneously remains nonjudgmental and still holds you accountable for managing your illness, which makes you take him seriously...and since he's been through it all, it's easy to take his advice.

This book covers almost every aspect of diabetes, from its most basic facts to dealing with its toll (physical, mental, and emotional) on your everyday life. At 288 pages, it's much shorter than most other books on the subject while still managing to be fairly comprehensive in its breadth. Each of the 12 chapters deals with a specific aspect of diabetes management, from diet and exercise to treatment options. Eichten makes it no secret that he believes the insulin pump is the superior choice for managing T1 and for some T2s, which I like. It would be very hard to argue that the pump is not the best, most technologically advanced option for dealing with this disease for the people who fit the bill for using it (because let's face it, some people just aren't cut out for dealing with a pump).

On first read, I was more than a little irritated by Eichten's portrayal of T2 as something that can "go away" (see lengthy discussion on that here); however, when I read over it again, I realized he said that through losing weight, you can make the symptoms of T2 go away. Important distinction there, because as many of us have discussed over and over again in the d-community, there is no cure for diabetes, no matter which type you're talking about. We all have to answer to the general public so often when they inform us of the "new miracle cure(s)" they heard of for diabetes, so anything that remotely reads as reference to "weight loss as a diabetes cure" immediately puts me on edge. Maybe it's because of the time that I had a stranger tell me at a restaurant that "they've found a cure for that"...the "cure" she was referring to? Gastric bypass surgery.  Yes, despite the fact that I was already at a healthy weight, gastric bypass would make my diabetes go away. It's so hard to explain to people that no, that won't make my pancreas function; that they're probably referring to Type 2, in which case it's still not "cured"...in my eyes at least, symptom-free (for the present at least) does not equal "cured." It may be a battle of semantics, but it's important to me. Why? Because the impression that there's already a cure out there hurts diabetes research funding that could lead to a real cure!

That little glitch aside (and really, I'm not sure I can even call it a glitch since I misread it), I think this book is pretty great, if for no other reason than the fact that it motivates you to shoot for better-not perfection. Often, we feel like other people (doctors, family, friends, etc.) expect perfection from us when it comes to managing our disease...or if you're like me, that pressure can also come from yourself. When we try to hold ourselves to such an impossible standard and inevitably end up falling short, it's hard to stay motivated to keep trying...and often, we end up throwing in the towel completely after trying so hard (and failing) to be perfect. If instead we just try to better ourselves-by any amount-we can benefit from a sense of accomplishment that leads us to keep striving for better. It's hard to see how anything bad could come from this approach, especially because it's one that sets you up for sure success instead of the inevitable failure of expecting perfection from yourself!

Bottom line, I love the message of this book. I can see it being extremely helpful for anyone who is in a D-rut, lacking motivation to manage their disease effectively. As the marketing person who sent me the book said, there's something in it for everyone-T1, T2; young, old; newly diagnosed or someone who has lived with the disease for decades. I'd recommend it to anyone as a quick, easy read that's entertaining in spite of being about a disease that's not funny in the least!