Friday, December 21, 2012

Update Time!

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

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

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

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

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

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

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

Brobson Artificial Pancreas Trial

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! =)

Friday, October 5, 2012


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 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 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


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 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 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:

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 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! 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 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" 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!

Friday, May 11, 2012

2012 JDRF Gala & The Ever-Present D-Monster

April 21st was the annual Promise Benefit Gala for the local branch of the JDRF.  The theme this year was "Lights, Camera, Take Action", which was Old Hollywood-inspiration at its best.  More importantly than the theme, though, was the fact that we were able to raise over $280,000 for T1 research!  It was an awesome experience for me, especially since this was my first big JDRF event to attend as a board member.  The atmosphere in the room was truly amazing--you could just feel the passion and excitement everyone had for the mission to find a cure for T1!  My parents' business sponsored a table for the night, and two of my dad's siblings attended with their significant others along with my parents, my husband and I, and our little one.  I think we could have easily raised another several thousand had she been up for auction...I lost count of the people who asked!  Despite our refusal to give our baby girl up for the cause, though, the night was a resounding success and raised a ton of awareness (in addition to funding) for T1.

In all seriousness, though, an awesome eight-year-old with T1 said it best in his speech before the Fund-a-Cure program: "I can't take another year of this!"  That statement pretty much sums up everything everyone with T1 that I know feels about the need for a cure.  I had tears in my eyes as this little boy told his story, because as bad as it sucks for me to have to deal with this disease, my heart breaks for the kids (and their parents) who are forced to do the same.  When he talked about his dad checking his blood sugar in the middle of the night ("I don't even wake up!"), it really hit home for me how much it would hurt if my little one had to deal with this disease.  I hate even having to clip her fingernails or put her in her car seat (because we're still dealing with a staunch aversion to it at this point), and I couldn't stop from crying when she got her two-month shots...I can't imagine having to poke her little heel or give her insulin injections on a regular basis, and that's the reality parents of children with T1 have to face 24/7.  This disease is a constant (and very much unwanted) presence in my life, and I don't know how I'd be able to handle the worry that would come with my child being directly affected by it.

I've been thinking a lot lately about how my diabetes affects my family at this stage in our life...because as anyone knows, the person with T1 is definitely not the only one who has to deal with it!  Every time I have a low, it's not just me and my husband or whoever that has to wait for it to pass; now, there's a sweet little baby girl that has to wait for me to find some sugar--usually when she's hungry and is screaming to be fed, thanks to the d-monster's sick sense of humor in timing.  Every time that happens, I can't help but curse this stupid disease's existence.  Most of the time, I look at my having T1 as an opportunity to be a part of a cause bigger than myself, because it gives me the chance to help someone else through my experiences; however, when it starts to interfere with caring for my child, the ugly reality of living with it becomes clear once again.  It's not so much the day-to-day stuff that makes diabetes such a monster; it's the times it worms its way into your life, inevitably in the most inconvenient of moments that make you wish it would disappear the most.  The lows never hit when you're surrounded by endless sources of sugar (because that's when you're most likely dealing with a high anyway); they surface with all the subtlety and forewarning of a shark attack, usually when you're in the middle of trying to grocery shop or when you're somewhere with nothing but an empty glucose tablet container to keep you company.

So there's the ugly truth...even though I try to use my having T1 as an opportunity to be a part of something bigger than myself and maybe even make a difference in someone's life as a result, I (just like everyone else affected by it) ultimately curse the day my pancreas decided to go MIA.  I love being able to help out with the JDRF and meeting such amazing people as a result, but I'd much rather be celebrating a cure with them than our common tie being a monster of a disease.  In the days and weeks since the gala, there have been a couple of local teens who have been hospitalized with T1 complications...a stark reminder of the reason we all work so hard to raise awareness and money for this cause.  In the end, it's not about the organization or the money; it's about each and every person--child, teenager, or adult--who has to live with T1 24/7, 365.  It's about every debilitating low and subtly damaging high.  It's about every missed moment and opportunity that the d-monster robs us of.  In the end, we're all here because we want so badly to find a cure that will make our lives a million times easier and infinitely better, and I feel truly blessed to know so many people who have made it their personal mission to not stop until it happens.

Monday, April 16, 2012

Baby Girl, My Awesome CDE, & JDRF

I don't have much time to write today, but I wanted to post a quick update on everything going on!  First off, Baby Girl is going to be three months old a week from tomorrow and I honestly can't believe it.  It seems like the time has gone by so fast already!  When we went for her two month checkup a few weeks ago, we found out she has reflux...which explains the extreme fussiness, poor sleep habits, lack of weight gain, and other symptoms over the first couple of months.  Our pediatrician put her on Zantac and recommended we raise the head of her bed and thicken her supplementary formula with cereal, and it's seemed to make a pretty big difference.  We just started the rice cereal last week, and now she's sleeping for MUCH longer stretches at night...needless to say, this mama couldn't be happier!  In retrospect, I should have realized what all of her symptoms were pointing towards much earlier than I did, but like they say, hindsight is 20/20.  I'm just glad we figured it out at six weeks instead of six months!

In d-news, my blood sugars have been a little more stable after a couple of tweaks to my basal/bolus rates.  I've still had more highs than I'd like, but I would still much rather run slightly higher than to deal with low crashes--especially at night!  After reading my last post, my CDE called to make sure I was okay because she was concerned about the lows I'd written about.  I assured her that I had gotten everything straightened out and back under control, or at least as under control as T1 can be, I suppose!  Thanks to her great teaching after I was diagnosed and general awesomeness thereafter, I can usually identify what changes need to be made or shoot her an email when I need extra help fixing things.  She was the first person (other than my husband, of course) to know when I was pregnant, and the first person other than my husband or I to hold our baby girl...not to get all sentimental or anything, but I'm so glad to have such a great mentor to help me through the whole d-experience!  If it weren't for her, I would have pretty much been left to deal with it all on my own since my endocrinologist has always been more comfortable with higher numbers and letting me manage everything myself...which is good in a way since it gives me a lot of independence, but bad in others.  Anyway, I know that a lot of T1s aren't as lucky when it comes to the professional help they get, so I feel super blessed to have someone that knows their stuff and is a great friend too!

I mentioned in October last year that my CDE had nominated me to the board of directors for the local branch of the JDRF, so over the past several months I've been learning more about everything the JDRF does and trying to help out as much as I've been able to.  It's really been awesome to see how dedicated everyone is to finding a cure and the support that the branch receives from the community.  This weekend is the annual Promise Benefit Gala, which helps raise around $250,000 for the organization each year.  I can't wait to be a part of it all, and I know it's going to be an amazing event!  I attended my first board meeting a couple of weeks ago, and I was impressed by how involved everyone is and how much they do to support not only the JDRF, but the kids and families affected by T1.  I've said it before, but I truly am honored to be able to be a part of such an awesome organization!  In one of her last email updates, our Branch Manager said, “This board can move mountains and they will be the ones that make the CURE happen!”  The more that I see how dedicated each and every person associated with this organization is, the more I believe she's right!

Friday, March 23, 2012

Low Places

As with everything else in my very type-A life, I began thinking about what my life as a parent with diabetes would be like long before I was even pregnant.  True to my need-to-know-everything-about-anything-that-affects-me form, I read a book on the subject last year 
(When You're a Parent With Diabetes: A Real Life Guide to Staying Healthy While Raising a Family by Kathryn Gregorio Palmer).  It's a great book with tons of tips for managing your disease in the context of parenting, and I highly recommend it.  Of course, no matter how much reading you do, nothing ever really prepares you for reality quite like...well, reality.

I knew theoretically that there would be times when my diabetes got in the way of parenting to the point that I'd sometimes have to put taking care of my disease before taking care of my child (the whole "putting on your own oxygen mask before trying to save your children" thing); however, I never imagined how bad this would actually suck in practice.  Before when I had a low, even a bad one, it wasn't much cause for concern.  I'd treat it, wait a bit, and go on with my life.  Now, though, there's another little person who is completely dependent on me to think about.  When I have a low, I have to drop what I'm doing with her to treat it, which usually means leaving her there to cry on her own for what in reality is only a minute or two but in my world seems like an eternity.  Probably the suckiest time that this happens is when I've just sat down and have everything situated to feed her, only to have to leave our comfy home base (aka, the recliner) to find something with sugar as quickly as possible so she doesn't break into one of those gut-wrenching, inconsolably angry crying jags.  Ordinarily, getting up from a chair wouldn't be a big deal; however, when you're (severely) sleep deprived and are trying your best to satisfy a crying baby, it's an entirely different story.

I've also been letting my numbers run slightly higher than normal, especially at night, because now the fear of the low you don't wake up from has an entirely new dimension.  Our poor baby would undoubtedly go hungry until morning, because although the hubby helps me as much as he can when he's home, he just doesn't wake up at night.  The first two nights in the hospital, he woke at her every, sometimes I think it'd take a freight train to wake him up!  One of our first weeks at home, I remember having a pretty bad low during the night.  I turned the lamp above our bed on and went to get some glucose tablets, then came back to our bedroom to wait it out.  15 minutes later, my blood sugar still hadn't risen much, so I grabbed some orange juice from the fridge in the kitchen and crossed my fingers.  My blood sugar was back in the normal range after that, but I was hit with the realization that (a) my hubby (aka, the slumbering log in bed next to me) didn't even know I was up and (b) the baby wasn't going to be much help if I passed out.

Since then, I've made sure to keep a close eye on my numbers before bed, and set temporary basal rates if necessary to keep me hovering above 100.  Of course, this inevitably leads to slightly higher numbers first thing in the morning; however, at this point I'd much rather run a bit higher on average than to risk the danger of a horrible low at night...there's just too much at stake now!

When I was pregnant, I had to keep a super close eye on my diabetes because it very directly affected the baby growing inside me.  Thanks to the hormonal changes that come with pregnancy, it was very difficult to keep my numbers in a tight range.  I figured it would be a lot easier after the baby was born, and in a way it is...because my hormones have returned to normal, I no longer have to take massive amounts of insulin to cover my carbs at meals, and my patterns are a lot more predictable.  However, the fact that my baby is no longer directly affected by highs (but just as much by lows) makes me a lot more laid-back when it comes to my blood sugars than I was before.  Don't be mistaken; highs still frustrate me and I'm still concerned with keeping my average in a reasonable range; but at this point, I'm more concerned with the lows than the highs.  Once I get a better handle on the parenting thing, I know I'll return to my perfectionist style of diabetes management...for now, though, I'm okay with good enough.

Thursday, March 8, 2012

Baby Love

Yesterday was the last official day of my maternity leave...and I honestly can't believe six weeks went by so fast.  I know everyone says that once you have a baby they grow up in the blink of an eye, but I've found out that (like many other things, a la the accompanying lack of sleep) you really can't understand this phenomenon until you have one of your own.

Six weeks ago, our lives changed.  Six weeks ago, we brought home a precious baby girl that still seemed like somewhat of a stranger to us (but whom we've since come to understand a little better, thankfully!).  In the time since, I've grown as a person.  I've learned what it truly means to be selfless as I've spent countless hours in a sleepless delirium trying to please a screaming baby, often to no avail.  I've come to understand a different kind of love, one in which the prospect of this tiny person being hurt, sick, or just unhappy brings a sinking feeling to my chest.  I've learned that good enough is, in fact, good enough when it comes to many things that I was a perfectionist about in the past.  Not only is it very difficult to get much accomplished when you're at the mercy of a newborn's crazy "schedule;" it's also incredibly easy to pass the hours and days entirely just holding her in my arms.

Then there's the sheer awesomeness of watching her grow and change before our very eyes...My husband was quickly amazed by the fact that such a tiny little girl could be so strong, and I love to take pictures of her (sometimes several a day) and look back to see how different she looks a short time later.  Around her one month "birthday," she started smiling...#ohmygoodness!  Her adorable toothless grins never cease to put a smile on my face, even if it is just while she's carrying on one of her "conversations" with the ceiling fan!  Last night, I had finally managed to calm her down after she'd been crying when she sighed dramatically.  I mimicked her, and got a huge smile in return!  It's true when they say that you'll do anything you can to get those priceless grins =)

She's also starting to interact more with the world around her.  There is a canopy on her Pack 'N Play that has giraffes hanging from it, and the other day while I was getting ready in the bathroom a short distance away, I could hear her cooing at them...and now they're within arm's reach!  I also finally ordered the Skip Hop activity gym I'd been wanting to get for her--it's a little pricey, but it's much cuter than any of the others I've seen.  The first time I laid her on it after it came in, I propped her up on her tummy on the miniature Boppy-style pillow it comes with so she could look at herself in the mirror, and I was amazed at how much head control she has!  It didn't take long for her to topple over the front of it, though, because her little legs never stop moving...if I lay her on my stomach, she quickly ends up by my face/shoulder as the result of her pushing off with them.  Of course, I knew when I was pregnant with her that she was going to be a little wiggle worm...she never stopped moving!  I didn't even bother doing the prescribed "kick counts" at the end because she moved so that way, she's definitely her daddy's child!

To shift gears a little, I was reading a post on SixUntilMe the other day about Kerri checking her daughter's blood sugar and the fear that comes with being a parent with T1.  As Kerri says, it's a thought that creeps up on you, either during (or before) pregnancy or when a harmless symptom (such as a wetter-than-normal diaper or an extra-thirsty baby) pops up later on: the big "What if?".  As a PWD, we're very familiar with the subtle symptoms that accompany this disease, and sometimes we're a little over-vigilant when we see them in those around us.  The thing is, just like Kerri said in her post, there's no need to sit around fearing that our children will suffer the same fate we did in the autoimmune/genetic pool.

When I was pregnant with our little girl, the question of whether or not she would "get it" (T1) too came up fairly often.  I tried to use these instances as education opportunities as I informed people that my children would have about the same chance as anyone else of ending up with this disease.  Although their risk is somewhat elevated (4% versus 1%), there's still a very small chance that they'll have Type 1 as a result of my having it.  In fact, as stated on the JDRF website, "only 15 percent of people with type 1 diabetes have an affected first-degree relative - a sibling, parent, or offspring."  Therefore, that my sister and I both have it makes us an anomaly among anomalies...We're part of the 5-10% of people with diabetes who have Type 1, as well as the 15% of the aforementioned group!

Even though the chance of our children developing T1 is very slim, I'm still going to do everything in my power to decrease that possibility as much as possible.  Because of the (loose) link between the protein in cow's milk and T1, I chose to use soy formula when we were forced to start supplementing.  Of course, the original plan was to breastfeed exclusively for the first six months; however, we had to start supplementing with formula when she wasn't gaining weight like she was supposed to (which I still believe is possibly due to gastro esophageal reflux, because she will do fine for a minute or two, then arch her back away screaming...her two-month checkup is about two and a half weeks away, so I guess we'll find out then).  Because not much is known about the cause of T1 (and because it's an autoimmune disease, and therefore extremely complicated), it's so hard to know what to do to prevent it...I suppose all we can do is raise our kids with a healthy lifestyle and hope for the best!

What many people do not understand is the autoimmune aspect of T1.  Thanks in part to the media and popular (mis)conception of diabetes, they assume that age is the only difference between the types.  I'll be the first to admit that before I was diagnosed, I didn't understand the difference--and my younger sister was diagnosed years before me!  Since my diagnosis, it's become very clear that we need to put more effort into educating the general public about diabetes, but especially T1.  It would make life much easier for those of us living with it!  I've tried to use every opportunity I get to educate people in everyday conversations, and in November I wrote an article addressing many of the misconceptions about the disease for our local newspaper.  However, it seems like for every person who "gets it," there are 10 more who don't.  Sometimes it seems like a losing battle, but I refuse to give up.  Until there's a cure for Type 1, the next best thing is making living with it easier, and that's something I--and you--can be a part of.

Wednesday, February 29, 2012

Patient Responsibility...And a Baby Update, Of Course =)

My last posts haven't had as much to do with diabetes as much as with my pregnancy and subsequent labor/delivery, so today I thought I'd go back to my roots for this one...although I'll preface with a baby update =)

Our little one is doing great--at five weeks old, she's growing and changing every day!  I was looking at some pictures of her from while we were in the hospital and right after we brought her home, and I was amazed by how different she looks already.  I also can't believe that she's already five weeks old...the time is already going by so fast =(  We had our first health scare last week when our baby girl started coughing at night, but luckily a trip to the pediatrician (an hour and a half away) relieved our fears--she just had a head cold, and the cough was from the accompanying drainage.  Nonetheless, I was glad to have answers since we were told that while sneezing in a baby was normal, coughing was not.  Not to mention that there's so much sickness going around right now...even though we've made it a point to stay home during these vulnerable first weeks, we still have visitors and can't avoid being in public for checkups and the like.

Even though I didn't think it was anything serious, I couldn't help but worry about her--especially since I'm at home with her most of the day by myself with only my thoughts to keep me company!  I know it's only the beginning of parental worry, but that doesn't make it any easier to deal with...even as we sat in the (sick) waiting room of the doctor's office, I couldn't help but think that if she wasn't sick to begin with, she might be by the time we left due to the older kids who were coughing around us!  Thankfully, though, everything turned out fine.  At the end of the week, I had to go back for my postnatal checkup where I had an IUD (Mirena) put much as we love our little bundle of joy, I doubt we'll be ready for another one for a couple of years!

While we were in the waiting room, I had to buckle the little one back into her car seat since I'd just put her in there after feeding her in the parking lot before the appointment.  I quickly realized that was a mistake, because as soon as she was uncovered, a woman with her pregnant daughter and two-year-old grandchild came over to investigate.  I know it's a first-time parent thing, but it took everything I had to not go all "mama bear" on them as the grandmother kept pushing the toddler towards our car seat telling her to "look at the baby!"  I simply finished buckling her in while my mom answered their questions, and bundled her back up!  Let me just say, I have no problem with people I know getting close to or holding our little one (as long as they're not sick and their hands are clean!), but random strangers?!  I'll be the first to admit it freaks me out, and I won't apologize.  After all, how do I know that the toddler wasn't sick?  It may sound a little extreme, but pertussis (whooping cough) can kill a baby our little one's age, so until she can get her first dTap vaccine (at two months), she's vulnerable...and it's our responsibility to protect her.  For that reason, we're following our pediatrician's advice of keeping our baby girl away from public places (and other young/unvaccinated children) as much as possible until the two month point...which means no church, grocery store/Walmart trips, or hanging out with our friends and their kiddos.  It's hard, but at this point our social life is much less important than keeping the little one healthy!

Okay, now that we've got all of that covered, down to business =)

I placed an order for glucose sensors for my CGM (Continuous Glucose Monitor) on February 10th, but never received notification that it had shipped.  On Monday, I called Medtronic and found out that the holdup was that my endocrinologist hadn't faxed the certificate of medical necessity back to them.  After having Medtronic re-fax the form, I called my endo's office to confirm they got it and let them know that I needed them to fill it out and return it ASAP...our new insurance year begins March 1st, so I needed to have my order shipped by today in order for it to be covered under this year, for which we'd already met our (ridiculously high) deductible.  They said they would get it taken care of, so in the meanwhile I checked the status of my order online on a regular basis.  By today, I was starting to get nervous.  I called Medtronic back to find out why my order still hadn't shipped, and found out that my endo hadn't checked the CGM box on the prescription form, so they were going to have to fax it to them once again to be signed.  This afternoon, I called the endocrinologist's office to make sure they received it and to give them the instructions on properly filling it out and sending it back.  A while after that, I called Medtronic (again...thankfully you get to talk to a different person every time, otherwise I'm sure they'd be tired of me by now!), only to find out that it would take 24-48 hours before the prescription certificate would be reviewed and scanned into their system.

As a result, I was forced to cancel my order...there was just no way, with the medical bills we're fixing to have to pay from the c-section and hospital stay and my husband's taxes that will be due in April (on top of our usual bills, baby stuff, and my insulin pump supplies, which run $492.80 every three months), that we need another $1,000 (the rough amount we'd be responsible for with the 20% insurance discount for my three boxes of glucose sensors) to worry about paying.  My parents offered to help, but I don't feel like that's their responsibility.  So right now, I'm disappointed and frustrated.  Disappointed that I'll soon run out of sensors, because even though I only use them occasionally now, they're super helpful in keeping an eye on my blood sugars as well as in adjusting insulin rates.  Frustrated (extremely) that everything was finally resolved to get my order out one day late, which is just my luck--a day late, a dollar short!

I'm mostly frustrated with my endocrinologist, because I suspect that the reason my form wasn't filled out and returned sooner is because he was on vacation (several members of my family also see him, and their stuff was just taken care of yesterday as well).  I have nothing against vacations, of course, but it would have been nice for his office to have called and let me know so I would have known why my order was delayed for more than two weeks.  Now I'm stuck with no sensors, which admittedly aren't as much of a necessity now that I'm no longer pregnant, but are still an integral part of my diabetes management...unless we end up meeting our deductible elsewhere, which is unlikely since my insulin pump supplies for a year don't come close to that amount, or I order a smaller quantity of supplies at a time.  I guess we'll see what happens!

Probably the suckiest part about the whole ordeal is the realization that I wouldn't have even known why my order was held up had I not been persistent about getting to the bottom of it.  As if living with diabetes isn't hard enough, I hate, hate, hate having to deal with the financial and political parts that come along with it...and on the spectrum, I'm very active in my health and d-management.  I sometimes wonder how people who aren't as involved in their healthcare do it, because I have to be very on top of things to ensure I get the care and everything else necessary to manage this disease.  It certainly begs the question of how much responsibility a patient should have in their healthcare, especially when a disease like diabetes (and insulin!) is involved...I can't help but question whether all PWD have to deal with the same things I do, or if doctors simply evaluate how much freedom (and therefore responsibility) to give their patients on an individual basis.  I honestly believe it's the latter, because I know that my endocrinologist has been pretty laid-back as far as how often he sees me (every quarter, even during my pregnancy, whereas he saw my sister every month or so during hers, and my next visit will be five months from the last...) and the level of control he gives me over my own d-care--I make the necessary changes to my insulin rates based on my blood sugar logs, and contact my CDE (rather than my endocrinologist) if I run across any problems.

I know from reading other diabetes blogs and from other PWD that I know personally that the level of control patients are given varies greatly, but sometimes I wonder if some of us are given too much responsibility when it comes to making sure things happen the way they should regarding our healthcare issues...I know in this instance, I would have rather not had to taken so much time and put so much effort into finding out why my supplies hadn't been shipped!