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!