So it’s been in a bit of time since my last article and honestly it was just due to life getting in the way. That happens. My family moved into a new home…hopefully, Lord willing, our forever home. (update: nope...moved again. hahaha) And as most big moves happen, it was with us. A blur of boxes, helpers, adjustments, administrative junk, hidden costs, money flying out the window, and scrambling to just get us all re-settled into a new rhythm of life. But during my move it kept rattling around in my head that often times, life with diabetes relates in some ways to a big family move. You think you plan and prepare and pack everything you need. You expect to have lots of help on hand and end up scrambling to adjust to some unforeseen stumbling block or expense you didn’t see coming. So that is why I’m dedicating this particular article to just that.
The Hidden Costs of Diabetes
To really understand the hidden cost associated with a diabetics life, you must understand the definition
of the word – Cost. Merriam Webster defines cost as simply “the amount paid…or expenditure made to achieve an object”. However, it is further described as a transitive verb meaning more accurately, IMHO, “to require suffering, or loss…to have a price of or to pay for something”. This latter definition more accurately depicts what I feel is the full rounded view of the cost of diabetes. You see the cost of diabetes goes far beyond the cost of medical bills and prescription co-pays. For us, as a family, we have already seen the FAR reaching costs…the suffering and/or loss endured…to having diabetes forever attached to us. And I know we have in NO WAY scratched the surface with our poor boy only being 3 years old. But to begin, let’s start with the easy stuff, the almighty Cha-Ching of it all.
We have a pretty good insurance policy and a solid coverage with good networks of doctors and care for our family with little out of pocket by the way of monthly premiums thanks to my husband’s very gracious employer. For that little fact alone we are eternally grateful. Especially because prior to this job we paid over 100 dollars per vial of insulin for our son…but I digress. We do have good, great even, insurance for our family. But, like every other insurance policy out there, it has limitations. Deductibles to meet, max out of pockets to spend, items covered in network but not out of network or not at all. Etc. The top of this list of things not covered, for us, is the pump supplies. That means, my son’s insulin pump itself (the item that delivers insulin to his body on an hourly basis) and all the infusion sets, insulin reservoirs, batteries and more, that are needed to make the pump work, are completely paid for out of pocket by the Bank of Mom and Dad. The pump’s alone can run upwards of 5k on average depending on the type you get and most will last you a good 4 years or more (so we are told) and that’s IF your very rambunctious 3 year old child doesn’t take a swing off the jungle-gym playing super hero and 86 his small pager-sized vitally important life-saving equipment before that time comes. Most pump manufacturers have programs for cash pay instances, and some insurance policies do partial coverages and such, but don’t ever make the mistake of thinking that IF a diabetic has insurance…then they are A-OK in the money department. There are also the Infusion sets and insulin reservoirs which are made to be disposable and must be switched out every three days at best (sooner if there is an illness or accident that damages the infusion site). They are considered to be a DURABLE MEDICAL item and thus NOT covered. We spend a pretty penny on those bad boys and I can’t tell you how often I’ve cringed because one was yanked out by mistake during a diaper change, bath time, babysitter error, or curious little brother who attempts to jump-rope on big brother’s “tubing”. Gee thanks junior, that just cost mommy and daddy 50 bucks!
Beyond the pump there are the ancillary costs of things like IV Prep pads and Alcohol Swabs. Now, Okay okay, I know you are thinking, “really lady…a little alchohol swab is breaking your bank…what are they like 50 cents a pop?!” Well you’d be wrong, they are cheaper than that, but add up the fact that I use about 10 a day, every day, for the rest of my child’s life, and that adds up. And insurance doesn’t even count that towards a deductible. And those IV Prep Pads we use, every three days, etc…it’s just one more thing. One more little cost of diabetes that is unavoidable and yet – money out of our pocket. All told, I asked my money-minded hubby what HE thinks we spend a year over and above insurance deductibles and co-pays and he estimated it at just over $2500.00 per year on just equipment. But that doesn’t really scratch the surface. My son not only needs a pediatrician to watch over him, but an endocrinologist, an eye doctor, a pediatric dentist, and that just for now. As he grows, and his diabetes grows with him, a multitude of specialists could be added to the list of doctor’s we’ll get to see so we easily tack on roughly 10 “standard care doctor visits” a year. And their handy dandy co-pays. It adds up quick and I’ll spare you the ACTUAL math of it all and jump over now to the next layer of cost of diabetic living.
As my son J starts school, we can expect he’ll have to miss many full or partial days for all his sundry doctor visits. The endocrinologist every 3 months minimum, the dentist every 6 months minimum, the eye doctor, and more. As the number of “ologists” increase and their visits get added to the roster, it’s fair to say he won’t be making that “perfect attendance” award …like ever. Fast forward in his life to his college and career path and imagine the world of jobs he’ll never be able to do. Imagine the number of jobs he’ll have the added perk of telling he has to miss, periodically, for this doctor visit or that doctor visit. Or the careers he can NEVER have because of the automatic dismissal on paper when they see that handy label of DIABETIC. But perhaps we are getting ahead of ourselves, lets back up to the right now of our lives.
The reality is, I am not able to take a full-time job at this point. Sure, I LOVE being a stay-at-home mom, but the plan originally was to re-enter the work field in some fashion once our boys were all in school. That may well not be able to happen now. My son’s diabetes takes constant management, and we’d NEVER disallow him to partake in any sport or activity that he wanted to try, and as such the burden is then on us. It will be our job to educate the coaches and teachers and ADVOCATE for our son every step of the way. To help handle the behind the scenes stuff so that he doesn’t have to feel left out.
And then there is my husband’s work. My husband has gainful employment now with a company he loves, but prior to this he was a self-employed contractor for a company based out of Washington, DC. He loved that job and LOVED working from home. But frankly, my son’s diagnosis made getting private insurance all but impossible. Just one look at the T1D label on our application and my son was instantly upcharged 700%. That is not an exaggeration. The cost quotes we were getting from insurance providers were upwards of 3k a month to cover our family. It was just unlivable. But my husbands self-employment status marked us as ineligible for ANY kind of state sponsored assistance in the healthcare department so we were stuck in a lovely loophole. My big brave man found a new job with better insurance and here we sit. His willingness to “take one for the team” was amazing. That alone was a HUGE shift for our family. A huge sacrifice for my husband. A huge adjustment and surely a cost that can’t really be measured. And for the record, my husband is a SAINT to make such a huge sacrifice to make sure our family is in the BEST possible situation to care for our son.
And finally, the cost…the sacrifice…of all this to J directly. He’s 3 and he knows to sit and wait to eat until we check his blood sugar. He has begun checking his OWN blood sugar. He carries his diabetes bag around wherever he goes and his pump pack is strapped around his little waist 24/7. He has NEON SIGNS practically announcing to the world that his body is ill. As a 3 year old, he already has an understanding of proteins and carbs and while all that is BEAUTIFUL and wonderful and relevant to his world…there is a childhood naïveté’ that he has lost. It’s the little things we teach like, with potty training, “be careful of your infusion set when getting on and off the potty.” Or with swimming with his daddy, “don’t forget to cap off your infusion site before jumping in.” Or even attending HIS OWN birthday party. We pre-carb count all the food, and pre-dose him all that we THINK he’ll eat just so he can have some freedom but in the end, even celebrations are largely shaped around making sure what he eats gets counted and what gets counted gets eaten.
It’s a constant 24/7 balancing act and as he is doing this all at only 3 years old. It’s both inspiring and heartbreaking to watch. And now, his twin little brother’s are beginning to learn. They too, at the age of 2 years old, now understand that when J is in crisis, they need to back off and let mommy help him. They come and offer hugs and cuddles and then later they watch him a little closer. They know what his glucometer is. And as I sign off of this article at 11:30 at night, I hear hubby going into J’s room to check his blood sugar and dose him accordingly and think of the many nights behind us, and many to come, that even something as precious as sleep gets set aside for the higher calling of a good A1C number and a healthy child.
It’s everywhere. Diabetes is not just “oh you take a pill when you eat”. There is no “simple formula or shot” to make things normal again. There. Is. No. Normal. You dance. You measure, you count, you react, you re-balance, you wait, you start over. Every day, every action, is permeated with the thoughts of what is needed to maintain a balance family life and a healthy child. So out the window goes the definition of a normal American red-blooded family with a houseful of rambunctious boys. And IN comes the indefinable spirit of a family that is bonded together in love, ever-flexing to accommodate the rollercoaster that we have all been put on. And we all love each other and give big hugs and kisses and as a family we join our sweet J and say, BRING IT ON!
Originally posted at Houston Style Magazine: