Selecting New Insurance

Open enrollment can be a confusing time. We recently had a rate increase with our insurance so I made my own spreadsheet of insurance choices. A few others were in the same boat so I shared this with them and now you. My daughter had the Blue Options 1424P plan and now has the Blue Select 1535P plan. This is how "I" compared.

My breakdown is as follows: (*See Disclaimer at the Bottom of Page) 

Woah, craziness huh?!  Here is the key to this:  The yellow and green sections at the top are basically the same plans, except Blue Select is a different network than Blue Options. Blue Select is a smaller network and saves big on monthly premiums. (The blue highlighted has a Blue Options comparative plan but wasn't one I was focusing on). I found that my daughter's pediatrician, pediatric endocrinologist, CGM supplier, and local children's hospital were all now providers for the Blue Select network, so it no longer made sense to continue paying higher premiums for the Blue Options network. 

What does all this mean?!?

Terminology Basics:

• Deductible is the amount of money certain plans charge out of pocket before coverage starts on certain benefits. If a family deductible is indicated, this means that if 2 people met their family deductible and the third person on the same plan went to use their benefits, they would not have a deductible because the plan capped it (example $800/$1600. Person 1: $800; Person 2: $800. Equals $1,600, so if Person 3 had to use benefits requiring a deductible, it would show as already having met the family deductible and there would not be a deductible charge for that Person 3. However, co-insurance may still apply if Family Out of Pocket Maximums were not yet met.)
• Co-insurance is the percentage of the negotiated/adjusted bill that you'd be responsible for (up to your out of pocket maximum). 
• Out of pocket maximum individual: The most that (utilizing in-network providers, brands, etc) that you would pay out of pocket, not including yearly premiums. This is a single person.
• Out of pocket maximum family: If multiple people were on the same plan and each had a BAD year, this is the most that family would be paying out of pocket, besides premiums. 
• The "P" at the end of these plans stands for Pediatric, which means that these plans have pediatric dental and vision included for $0 for most items. (All of these particular plans offer most items at $0 so I did not do a complete breakdown of benefits, but these include glasses, exams, cleanings, fillings, dental x-rays, etc.)
• All information was gathered from the insurance website. (In this case bcbsfl.com)

I posted a few icons on the side of the breakdown picture: 

• Green key: 1st visit is $X; 2+ = any subsequent visits are $X
• Blue crosshairs: There is a maximum on some of the plans for 3 days. So there is a co-pay of $X per day, up to 3 days worth of co-pays, after which there are no additional co-pays per day. 
• Purple arrow: The DME category is extremely important for type 1 diabetics who intend to receive any sort of pump or CGM equipment while on the plan. Always review this area for coverage details prior to selecting a plan. These plans all show $0, which mean that a member would receive a pump, pump supplies, CGM, and CGM supplies for $0. No deductibles, co-pays, or co-insurance. 
• Yellow star: The * next to $20 indicates that this plan has a Condition Care RX program, which gives reduced co-pays on medications for certain chronic conditions, including diabetes. Meaning that instead of the normal $40 co-pay for preferred brand RX, preferred brand diabetes medications would only be $20. You'll also notice that there is a 3 month mail order in place for diabetes RX's as well, for a reduced co-pay of $38 (3 months), which can save you $22 per 3 months per RX. *UPDATE 2/29/16: I ordered under the 1535P and found that this plan does not offer the Condition Care RX program anymore like 1424P does. The copays are $50 per 3 months (tested on insulin and strips) but I found that it went down to $36 for lancets. So a bit more for a few plans than anticipated but nothing that would sway choices in other directions. As always, verify coverage prior to enrolling in any plan. Condition Care RX is something not always advertised so apparently I missed that it was not the same as before. My apologies!

Scenarios: (Yes, I was thorough and had even more non-diabetic scenarios but limited it here for target audience purposes). Scenarios are how you get plans to make sense. You can look at a few plans and see a scary 40% co-insurance, but how often would that even apply?  Maybe it's a difference between the higher deductible plan with lower premiums vs. a higher premium plan with lower deductibles. Scenarios are the best way to make that decision of risk vs. benefit for what you anticipate your needs to be in any given year, along with a few years of increased expenses. 



Scenario 2 (really is first one shown here, sorry!):  I want to point out that these are estimated costs and number of visits, everyone would be different. Locations, hospitals, negotiated rates, premiums, everything VARIES per person. This was for MY daughter but is the guideline of how to create your own basic spreadsheets. 

• Yearly: Monthly premiums times 12 months. Remember that these do not count towards out of pocket maximums. 
• Deducible/Coinsurance/Out of Pocket Max's: Recap of the plan benefits
• PCP: Primary Care Physician. This scenario estimates 2 sick-day (not preventative) visits to PCP. 
• Specialist: assumes 6 visits to the specialist (IE: endocrinologist, increased from normal year due to DKA follow-ups etc). 
• Labs: Assumes yearly maintenance labs were completed at an independent participating lab (such as Labcorp/Quest). 
• Inpt Hospital/Physician: 2 days spent in-patient hospital for a negotiated rate of $20,000. (This is quite high but covers nationwide fluctuations). 
• DME: Assumes Dexcom CGM Kit (1 receiver; 2 transmitters) and CGM supplies/ Pump supplies for 12 months. If getting a new pump, would still have been covered for $0.
• RX's: 12 months of Insulin (this is assuming pump, which is bolus only); Strips; and Lancets are mail order under this plans Condition Care RX program, which means that 3 months is discounted to $38. So for a year's worth, it would be refilled 4x at $38 per script, times those 3 scripts. Non-pumpers would have their basal insulin in addition to this. Glucagon: I did an assumption of 2 per year, filled at retail pharmacy but still under the Condition Care RX program for a discounted co-pay (but didn't add in the second refill co-pay, this is a mistake but for the time and effort of making this picture wasn't worth fixing it.)

I then compared each category involved and the assumptions made. I will breakdown the first two plans for comparison. 

Blue Select 1535P: Yearly premiums are $2,904. Visiting the PCP twice for non-preventative visits are a $25 co-pay each time, so $50 total. Visiting the specialist 6 times means a $60 co-pay each time, for a total of $360. This plan has an in-patient hospital co-pay of $600 per day (up to 3 days max), which means a 2 day hospital stay would be $1,200. Preferred RX for glucagon is a $20 co-pay per fill (yes, I miscalculated here, add $20 or assume only 1 glucagon was filled that year). Filled 3 scripts via mail order pharmacy 4 times that year, for a total of $456. All CGM and pump supplies are covered for $0. The out of pocket maximum was not met. This plan meant an estimated cost of $5,010 (or $5,030 with second glucagon). 

Blue Select 1451P: Yearly premiums are $3,252. Visiting the PCP twice for non-preventative visits are a $0 co-pay each time, because the first 3 sick visits to PCP under this plan are no co-pay. This plan has an in-patient hospital deductible of $800 plus 10% coinsurance. Assuming the negotiated rate of the stay is $20,000, that means: $20,000 minus $800 is $19,200. $19,200 times 10% is $1,920. Add back in the $800, for a total hospital bill of $2,720. However, the out of pocket maximum is only $2,500 so this is the maximum you'd be spending out of pocket (assuming you were using in-network everything).  (Visiting the specialist 6 times means a $20 co-pay each time, for a total of $120. Preferred RX for glucagon is a $20 co-pay per fill (yes, I miscalculated here, but assume only 1 glucagon was filled that year). Filled 3 scripts via mail order pharmacy 4 times that year, for a total of $456. BUT ---there are actually no co-pays for any of these because out of pocket maximum was met with hospitalization. This assumes it occurred before any of these co-pays were paid, otherwise the overall idea is the same but the payments would be spread out through the specialist/pharmacy etc and the hospital would just collect less from you) All CGM and pump supplies are covered for $0. This plan meant an estimated cost of $5,752. 

The Blue Select 1457P plan yearly cost in this scenario estimated $4,732; Blue Options 1505P estimated at $5,938; and Blue Options 1424P estimated at $5,860. The winner here is the Blue Select 1457P plan when basing the plan benefits on a scenario such as this.

However, you need to account for if this is the norm vs. an abnormal year. Scenario 3 (really the second shown) shows a typical year with normal endocrinology visits and supplies, without hospitalization. For a normal, healthy year, the Blue Select 1535P plan was the winner. 

Because my daughter was switching from the Blue Options 1424P plan to the Blue Select 1535P plan, we saved an estimated $1,460 PER year. By not being complacent and accepting the rate increase and staying with the same 1424P plan, we save $6,690 in a scenario 5 year period (assuming 1 year of hospitalization scenario and 4 maintenance years). We save even more if she remains healthy during those same 5 years. 

The difference between the hospital DKA scenario and the normal year scenario for the two "winners" was only around $275 (Plans 1535P vs 1457P). So for our family, in risk analysis, it was worth the gamble of $275 in a hospital scenario (non-probable) in order to automatically save $330 per year by choosing the 1535P plan over the 1457P plan. In a 5 year period, if we "win" $330 (assuming stagnate rates etc) in 4 of the 5 years, we still come out ahead over a thousand dollars over that period, just by choosing the plan that makes more sense for us and previous health indications.  


This guide is helpful if you are needing help deciding between group insurance plans, individual plans, COBRA insurance vs. individual plans, or when there are rate increases, benefit changes, employer contribution changes, etc. It is geared towards a type 1 diabetic, but the principles can be used by non-type 1's as well. 


*Disclaimers: I am not an insurance agent or authorized representative of any insurance company, etc. All information should be verified prior to enrolling in any health insurance. Prices are based on a child-only individual policy without subsidies for Florida Blue for a four year old child with information found on bcbsfl.com. Any mistakes are my own.  A child-only policy typically is an individual plan that is found directly with the insurance provider and may not qualify for subsidies. These are not government plans such as Medicaid/Medicare and rates can change at any time and all benefits are subject to the written terms of the plan, including limitations and exclusions. Increased usage of the plans may result in additional charges up to the out of pocket maximums. Not all plans found in the United States offer prescription co-pays under their maximum out of pocket umbrella and you may need to calculate them above and beyond any out of pocket maximums. This is especially important if you are on any specialty drugs (such as for cancer, HIV, hepatitis, etc.) Your personal insurance agent or HR representative should be able to provide more details about your plan options. Not all plans cover pumps or CGM's (and supplies) under DME or at all, as they may be subject to limitations, exclusions, or pharmacy benefits. Check all benefits carefully prior to selecting/enrolling. 

Watching Siblings Like a Hawk

My T1 daughter was diagnosed just shy of 23 months old. Her symptoms started just after she turned 22 months old and while I realize she was little, I didn't truly think about HOW little until my other daughter turned 22 months old. I look at this little body and can't imagine doing all the things we had to do for our other daughter. Perhaps its because we HAD to do them no matter what? Maybe I stuffed my guilt far enough down that 2 years later I've mentally put a block on the worst of it?

But then I start thinking....my other daughter is now at the age my first daughter was when she was diagnosed. Has the waiting game started? Is it only a matter of time before she becomes diabetic as well? It was almost a mini-mourning session again for me as my 2nd daughter turned 22 months old. This past month the thought continually runs through my mind, what if? What if my other daughter is diagnosed soon?

In some ways, watching my second grow up will be a lot of firsts for me. She already is speaking 15x more than my first daughter did at this age, simply because she's had the glucose available for learning new things. So far, she won't have to worry about extra potty breaks, needles, soaking her bed, sleepovers, babysitters, carb counting, eating foods in the best order for minimizing blood sugar spikes, waiting for food until insulin peak time matches, cannulas, Dexcom alerts, school issues, etc. She is young and carefree and in her I get to experience parenting a young and carefree child.

Yet, there are a lot of emotions when I think about my second daughter:

• Happiness, because (right now) I don't have to worry about her dealing with the multitude of issues that come with daily diabetes care, both for her sake and mine. I know that when she gets sick, it isn't potentially life-threatening. I know the medical expenses aren't going to add up every single year, that I can send her to school and not worry about her. If I needed to, I could find a daycare who would accept her easily, or find a babysitter for her without an in-depth training session first.
• Guilt, in part because of my happiness. I feel guilty for feeling so happy that I have a "normal" child without special needs. Diabetes is just.so.hard., and I need a respite sometimes. But to get that respite in the form of a child of mine that doesn't require 24/7 care? G.U.I.L.T.  I feel like I will be slapped any moment with a crimson letter to wear for feeling these traitorous thoughts. I love my T1D child. I love every little piece of her. A diagnosis would never change that. But does that mean I don't wish she never had it? What parent would ever choose this for their child? Every parent awaits that day our children will be cured.
• Fear. Oh the fear. This is the part that has me questioning everything. Did she just ask for extra juice/water? Is that a diaper rash? Does her diaper feel extra soaked this morning? Is she getting sick? (IE: Did the trigger event happen?). Maybe I should just check her blood just in case. An 84 for fasting, score!!! (Back to happiness, then guilt). But I will continue to Watch.Her.Like.a.Hawk. Always.
• Hope, there is always, always the hope that she will not be part of the statistic that shows an increased risk for siblings of a T1 child to also be diagnosed with it. Most parents hope for many things for their children, but having their top hope be that their child doesn't receive a life-long disability generally isn't one of them. In our house though, this is an actual thing. I HOPE with every piece of my being, that she doesn't have to go through what her sister does. I can't protect her from it, I can't stop it from happening, but I can certainly carry hope that she'll never get it.
• Empathy, for my T1D who now has a little sister who is different than her. She will watch her sister not receive the pump changes, Dexcom sites, finger pricks, or have to count (or wait for) her food. The diabetes stigma won't be there and she won't have to sit on the sidelines waiting for a blood sugar to come up or go home early because she has ketones. I also feel empathy for my non-diabetic child, because of the attention that is bestowed on my T1D. I already feel badly how much attention my husband gave our first born vs. our second. My daughter was diagnosed when I was pregnant, so my husband made it his mission to shower our first with all his attention while I nursed and cared for the newborn. Except now my youngest is nearly 2, and my first still gets the lions share of the attention. It's not on purpose. Think about how they always say that the first will have a million pictures taken of them, while the subsequent children are lucky to have a single album. It's so true but add to that a medical diagnosis that forces you to focus on medical care 4-8x per day for one and not the other, and the attention (even if it's not all daisy-chains and sunshine) starts to stack up unevenly. We are aware and try to make it right, but there is a reason a lot of d-parents are referred to as helicopter parents to our d-children.

So for now I will continue feeling this way, who knows for how long. I'm resigned to the fact that it could happen, and my other daughter could be diagnosed. We are finished having children, in part because T1D is as time consuming and expensive as having a third. Right now 50% of my children have special needs and all it takes is one more diagnosis to jump to 100%. I am going to actively try to not think about this everyday or every week, but I know myself and will be grabbing that meter whenever there is a possible symptom. To all the parents with more than one diabetic, I SALUTE you. R-E-S-P-E-C-T. But I hope that I never, ever join your ranks (just as I know that you hope I never do either).

The Worst Kind of Post



This past weekend was a major blow to the Type 1 Diabetes Community. We lost two little kids to complications from undiagnosed type 1 diabetes. One was Kycie Terry, 5, who suffered a traumatic brain injury due to brain swelling from DKA (Diabetic Ketoacidosis) in January 2015 and succumbed to complications on July 11, 2015. A day later, we learned of David Brown, 4, whose DKA case was too advanced and he succumbed within days of initial diagnosis.

 

Unfortunately, these two cases are just the latest in a long line of undiagnosed children becoming casualties due to a lack of awareness of Type 1 Diabetes symptoms, and a tendency for doctors to avoid looking for the "zebra" amongst the horses (flu, bladder infection, viral infections, stomach viruses, asthma, sinus infections, UTI's, dehydration, anxiety). Here is a video from the parents of Rocco Kuehl, a Florida boy who had just celebrated his 1st birthday. His parents have set up a charity Drive for Diabetes Awareness in his honor to raise awareness of type 1 diabetes. It is heartbreaking to hear these preventable stories.

 

 

 

 



Something has to give. Over 1.25 million Americans live with Type 1 diabetes, and the rates are growing at a staggering percentage. There is no known cause or cure. Type 1 diabetes is too often a "silent killer" of not only youths, but also adults. This is not type 2 diabetes, and this is not something to laugh about.

 

How is it possible that so many people are still dying in a first-world country from a condition that can be diagnosed for pennies??  Doctors will swab for sore throats, urine is collected for UTI's, ears are checked for possible ear infections. Why are we not checking glucose with a single drop of blood or a urine dipstick for kids who present with these symptoms? Flu-like symptoms in diabetics means they are already progressing into a dangerous complication, known as Diabetic Ketoacidosis (DKA). DKA has symptoms such as breathing issues, fruity smell to their breath, vomiting, stomach pains, dry mouth, in addition to the classic diabetes symptoms of excessive urination (frequently shows as bed wetting in younger children), extreme thirst, sudden weight loss, extreme tiredness/lethargy, increased appetite (although can also present as decreased appetite).  Don't guess, CHECK!!


This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!



This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!

For more information on DKA prevention and more posters available for download, visit www.testonedrop.org

To the Parents of that Newly Diagnosed Kid

I see you there. You, the one who never imagined being in the hospital with your precious child. No matter how old they are, you still think of them as a small child while in your arms. You feel guilty that you might have missed the earliest signs and caused more harm. You are putting on the brave face in front of them and crying when you close the bathroom stall door. You're wondering how to pay for everything -  the hospital, the numerous new prescriptions, the time off from work, the various new foods that you're thinking will be needed. You are sitting in the hospital at your child's side, praying for both a miracle or someone to wake you up from this bad dream. You are also wishing for some sleep, because that's currently in short supply with all of the beeping monitors and nursing staff collecting blood every hour or two interrupting your REM. I see you trying to learn this new diabetic language while tossing all your preconceived notions about diabetes out of the window.  You are juggling your other kids/pets/job/family while being determined to spend as much time at the hospital as possible.  I see your stress as you learn this new lifestyle of carb counting, insulin formulas, emergency protocols, and all the while hoping that you aren't going to make a mistake and harm your child. I see you trying not to freak out the first time you have to stick your child with a needle. You are questioning every mouthful of food they consume, wondering both if it's enough or too much at the same time. You are worried about your child and their mental understanding of what this diagnosis means. You are also worried about how their teacher/sitter/friends are going to be able to take care of them if needed. And you are responding to well-wishers like a champ while swimming to your new island of loneliness where no one else understands. 

I see you. So on top of all the other information you are getting, listen to this. Soon, diabetes care will be the tiniest bit easier.  You will have nights where upon going to sleep, feel like you should get an award for best pseudo-pancreas. You will start talking the talk and understanding what the doctor's intent is when they make changes.  You will get diabetes "right" about 75% of the time, and curse it the other 25% for not making up its mind. You will know there was nothing you did or could've done differently to cause this diagnosis. You will find support where you least likely expect it. And I just want to let you know, I see you.  I've stood in your shoes. While every journey is different, we are all linked together because we get it. Like, "get it" get it. And it will get better for you. 

What I Want to Really Say When I Say "I'm Fine"

     When a parent has a child diagnosed with type 1 diabetes, there is a rollercoaster of emotions, learning diabetes care, expenses, etc. What others don’t realize is that we have our own struggles that are separate from what our kids face. What we need is support and a little understanding. This is not a disease to blow-off and it is not a disease that our kids will outgrow. This is our new reality and it’s harder than you probably thought or give us credit for. We are not looking to be “victims”, but want you to understand that when you ask us “How’s it going?”, and we say “Fine.”, we are really just giving you the answer you were looking for instead of telling you this:

• We have perpetual newborns. Diabetes care for a child means nighttime blood checks, the equivalent of the nighttime feeding(s) that babies require. Babies outgrow this though, whereas D children do not. The younger the child at diagnosis time, the more likely you are to see zombie parents. The best we can hope for is technology which allows us a modicum of blessed sleep. Then diabetes is all like "No-No-No!  No sleep for you!" The CGM (Continuous Glucose Monitor) can fail (which means a lot of us wake up anyways just to make sure its still working); it can produce false data which buzzes in the middle of the night (CGM: Hypoglycemia, take action now! Real blood glucose: Above normal non-diabetic values); or it can produce real data which requires action (up and down the stairs hour after hour to test blood, give glucose, give insulin later when sugar skyrockets from earlier glucose but hopefully not too much insulin which will mean the cycle starts all over again.)  Basically, kiss sleep goodbye. Now we’ve got to get up the next morning to go to work/school/events and somehow get our kid(s) and ourselves ready, then function at a normal level so we aren’t fired/sent home/crash the car/screw up diabetes care/forget our kids at school.  We apologize if we aren’t focused 100% on the description of your new handbag/car/job, but we were up every other hour last night.  We apologize if we can’t make it out to the bar/event/playdate, but we desperately need a nap.

 

• We have a stress like you can’t imagine.  Our kids’ lives are literally in our hands. Diabetes for most of the population consists of older adults who manage their own care, and many of them are on little to no insulin.  Children living with Type 1 diabetes are insulin dependent from day 1. For those years we need to take care of them, it’s a guesswork game of balancing every single thing they eat to match activity levels, along with hormonal shifts, sickness, and growth. If you don’t give enough insulin to match those requirements, they end up with hyperglycemia (high blood sugar). High blood sugars are what lead to those nasty complications that you hear about, like missing limbs, kidney failure, and DKA (which can lead to coma and/or death but at the very least requires hospitalization and horrible symptoms). If you give too much insulin to match those needs, your kid can literally have a seizure, crash a car (if driving), go unconscious, slip into a coma and quite possibly die. Talk about responsibility. There is no magic formula though for all of these factors, so we guess and hope that it all works out. This is a 24/7 disease which requires us to be at the top of our game every day, all day.  There was actually a study done which showed that one-third of newly diagnosed children's parents experience PTSD. Anxiety and depression can also creep up on us. The feeling of "Oh no, did I do that right?" to "Oh no, this is never ending, and what happens when I am not around to help out". We go through bouts of pity, for ourselves and for our children. We have to mentally drag ourselves off the ground and keep reminding ourselves that this is our new normal. It will get easier, but it will never be like it was.  Some people cope with that knowledge better than others.

• We don’t have normal relationships or outings. A lot of us live day by day, just trying to survive. We don’t have the normal date nights or vacations that many of our peers have. IF we are lucky to find a babysitter, we will probably spend at least half of the date night worrying and/or following up with that person to check on our child. It’s almost impossible to just let go and allow yourself to be in the moment. A lot of the night might consist of talking about d care or d child. It takes a conscious effort to set your mind aside from those discussions in order to allow yourself to reconnect with your spouse. A lack of babysitter options leaves even these date nights to be far and few between or non-existent.  A lot of marriages fail after a diagnosis like this, so it is extremely important for spouses to be able to reconnect as a couple instead of only parents. If they do not, there will be no remedy for the stress, which is not healthy for any relationship.  Vacations are generally more stressful for us than our home lives. You have to be sure to bring enough supplies for normal diabetes care, plus backups.  A child with an insulin pump has to have special screenings in an airport. Flying with a pump can lead to air bubbles in the tubing, so you have to disconnect your pump at takeoff and landing. You cannot check any d care items, so all of those items and backups are going in your personal bag or carryon. Going on a cruise (normal awesome) leads to anxiety about carbohydrate counts found in the various foods. Excitement can lead to high blood sugars (Disney anyone?), then there can be a rapid decrease in blood sugar leading to hypoglycemia (have you WALKED Disney anyone?).  If your child is on a CGM, you then worry about swimming, sweating, water in general (is it going to be lost in the ocean? The wave pool? Is the tape going to peel off? If tape peels off, do I have enough backup sensors for the entire trip?).  Did the insulin get too hot in this tropical paradise?  Did it get too cold in this arctic climate? Here, let me carry this diaper-like bag for the rest of my kids' childhood that carries the d-care essentials. What, you don't allow bags on a rollercoaster?  Now we've got to do a rider-swap and ride alone because there is no way I'm leaving that life-saving bag in a locker.

• We deal with ignorance and greed that is mind-blowing. (Yes I'm talking to you Dr.(!) J. D., owner of a certain drive-in movie theater in NJ). We shouldn't have to stop and worry "Is this shopkeeper going to let my child treat his/her low blood sugar or demand that we be removed from the premises for eating/drinking or bringing our own food?" I should point out that this happens quite frequently where businesses demand no exceptions to their no outside food/drink. My child has a strict amount of carbohydrates in a certain format that is easily and readily accessible. This is not a "snack", this is a life-saving preventative that we hope to not need in your business. It is not an excuse to consume food that wasn't purchased for 400% retail pricing after waiting in line forever. You are not losing anything allowing this treatment to happen. Conversely, if my child were to consume something on your premises from your premises that we had not been able to yet pay for due to foggy brain/long-lines, you would be screaming that it is theft (even with the intent to pay). You might be a small business, but what is stopping every business then from requiring us to purchase fast-acting forms of glucose from every single shop we might visit? Walgreens, Target, Wal-Mart, malls, sporting events, schools, gas stations, movie theaters, etc all have food on-site. Imagine having to go into a line first thing (even if just browsing), buy a huge pack of Skittles, then have to shop around and re-enter the line later to make your actual purchase. You haven't eaten the Skittles but now you need to stop at another store. You have to leave that one in the car and go into the next store, only to repeat. (But wait, if you are in a drive-in movie theater, the owner is making you throw away what you brought for lows during the drive!) Businesses claim that by being a "small business", it is financially hurting them to not purchase glucose from them and that we shouldn't receive special treatment. When your business has the news media come to your location because you denied my child entry due to their Halloween-sized candy, that will be financial hurt. Our children did not choose this life.  Don't even GET me started on insurance coverage and denials. Some insurance companies require that your child have several documented episodes of medical intervention or seizures before they will cover items like a CGM. Their cost analysis is literally we-will-make-you-prove-that-you-are-going-to-cost-us-more-in-ambulance-fees-than-in-CGM-costs.  Better yet, your A1C (a diagnostic tool that measures average glucose) is now "healthy" so we will no longer cover your CGM. Umm, the reason it's so "healthy" is because we are ON the CGM!

• We struggle with money. Even if we make enough money, we always fear not having enough. We fear not having enough money to pay the insurance premiums, enough to pay our deductibles, copays, coinsurance, etc. What if my zombie status or my sick child makes me lose my job? Will I lose my family health insurance?  What if my insurance stops paying for X? Do I make enough money to pay for it out of pocket? What if someone thinks this CGM receiver/pump is an iPod/iPhone and steals it? Chances are that even if we are able to make those payments for everything, we are missing out on something else. That might be a vacation or getting rid of cable.  Something in our lives is not as it would have been if not for d-expenses. There is always a trade-off somewhere. Quite a few of us have stockpiles of d-care items, just in case. We all do the we-have-insurance-now, so we-have-to-maximize-it-for-those-What-If-situations (or for a (real) zombie apocalypse/doomsday scenario, whereas you do not want to be near a pharmacy because all the other D-parents will be raiding them for insulin).

• We cry (or frequently want to). A biggie for us personally: generally we (d-parents) say that our d-kids can eat whatever they want, as long as they bolus for it....and generally that is true. Except when it isn’t. Most of us have a list of forbidden items, such as waffles, high-sugar cereals, cotton candy, etc. If your child has high blood sugar to start with, you do not want your child to eat a carbohydrate heavy item. It’s sort of like being on a diet, except if you “cheat”, your consequences can include loss of eyesight (retinopathy) or dialysis in later life.  So when we see our kids longingly staring at the fried funnel cakes, we know that 6 hours of high blood sugars are just not worth it. When the kids next to us walk by with giant pixie-sticks, I know that’s not a possibility for my child. Sure, my kid will most likely be healthier for not having it (diabetic or not), but it’s the ability to eat it carefree that I die-a-little-inside over.   Others might feel that way over sleepovers, sibling jealousy (either d-kid gets jealous of non-d siblings, or siblings jealous of attention d-kid gets), bullying at school, struggling to get schools to comply with ADA requirements (last week a school made a d-student eat pizza out of the TRASH because they were out and she already had insulin for it. Trash?! Proper training would have never allowed that to happen.)

• Our hearts break frequently. It’s the pain of seeing your child in pain. Let’s face it, NO ONE wants to be stuck with lancets 6-10 times per day on their fingers. No one wants to have either needles being stuck into them every time you eat, plus a few extra to account for a long-acting insulin and any high blood sugars. No one wants to have IV sized needle/cannula systems being inserted into their fatty spots every 2-3 days (pump) and/or every 5-7 days (if it lasts that long for CGM’s). My own 3 year old starts crying and screaming the moment we pull out all of the equipment for a CGM or pump change. She runs when it’s time to check her blood. We’ve played games, distracted with TV, gave rewards, etc. It got easier for a bit but then diabetes burnout happens to the best of us, including 3 year olds.  When they start getting older and ask you why they have diabetes and will it go away when they turn X?  Watching their little faces as you explain to them that “No sweetie, this will be with you the rest of your life”.  That is a pain that you don’t want to have to face.  We are currently doing no stomach sites for our daughter's pump, because I am so afraid that the scars will remain from years of site changes.  I don't want to have to face her when she is a teenager, crying because she thinks she looks horrible in a bikini due to the plethora of circular scars mottled across her stomach.

• We cannot STAND comparisons, know-it-alls, or being blown-off. Remember everyone, to assume make an A** of U and ME.
• Don’t assume that our kid can’t eat it. Unless you ask, you don’t know. While I might not let my child eat cake every single day, I would quite possibly make an exception at a birthday party or let my child have ice cream after a heavy bought of play. Conversely, don’t give my kid items without telling me ahead of time. Assuming that he/she can have ice cream and just giving it to them is not the same as my dosing insulin for it beforehand, allowing the insulin to start working first, and then carefully portioning my child’s snack to fit the amount I dosed for.
• Don’t compare my child to one that has another disease. We hear “Well at least it’s not cancer” quite a bit. Yes, we know that things could be worse but do we need you to remind us of that? We still wake up every morning thankful that they survived through the night. Some parents aren’t as lucky as that. They both have stresses that you cannot imagine so please don’t make that assumption for us. 
• Don’t send us the latest Facebook post/e-mail chain about how Okra water/cinnamon/moss will cure my child. Type 1 diabetes is an autoimmune disease whereas their pancreas is all but dead. Okra water will not revive it because within my child’s body there are killer antibodies that attack healthy cells. So even if/when they are regenerated, they are killed off again so quickly that it doesn’t even matter.  They will never outgrow it, even though it’s previously known as Juvenile Diabetes. One of the reasons they changed the name is because juveniles grow up into adults but still have the disease. They don’t transform into diabetes-free individuals or suddenly label themselves as type 2 (metabolic diabetes). It used to be called Juvenile Diabetes because it was juvenile children that were being diagnosed most frequently with this form of diabetes. Quite a few parents also notice your choices in diabetes humor, such as those picture meme's showing a high sugar item that states it's name isn't Kit Kat Lasagna, it's Diabetes. It's all fun and games for you, but let me remind you all that I was not a d-parent either the night before my child was diagnosed. I hope that you never have to know and live diabetes.
• Don’t tell us that you know ALL about diabetes because your sister’s friend’s aunt had it and you went over to there house one time and watched her get a shot. Likewise, your grandmother’s leg was amputated so if my child eats that cookie then they will have complications like that and I am horrible parent to let them eat that. Even Type 1 patients are not alike. My child might only take 6 grams of carbohydrates to treat a low blood sugar while the teenage boy around the corner might need 20 grams. Around 90% of diabetes cases (or diabeetus for the Wilford Brimley generation) are considered Type 2 and are metabolic in nature. In other words, their pancreas still produces insulin but the body cannot use it correctly for some reason. How much their body is able to use is what determines their treatment options, which is why you hear of some people taking pills only, or one injection only.  The overall supplies are the similar/same as Type 1 but the mechanisms that cause it are completely different, so unless you have extensive personal training in Type ONE diabetes, you do not know-it-all. Even Type 2 diabetics and doctors get it wrong a lot when it comes to Type 1 diabetes. 
• Don’t make statements like “But he/she’s not fat”, or “get him/her to lose weight and he’ll/she’ll lose the diabetes too”, or worse yet “You shouldn’t have let him/her have candy, then he/she wouldn’t have gotten it”.  Type 1 diabetes has nothing to do with weight or eating habits. There was nothing we could do to prevent it, and nothing we did to cause it. Saying these things only make us feel badly because our only options are then to sit there and take the ignorance, or defend ourselves (and kids) and embarrass everyone. Meanwhile, I’ve got to go home and explain to my child (again) why they have diabetes, that it’s not something they/we did, and not something they can get rid of. But thanks for giving my child a complex, false hope, or eating disorder.  (Diabulimia is a real disease, please Google it.)
• Don't tell me that my child should test blood/give injections in the bathroom. If you would not be willing to eat your own food in there, why should my child be exposed to bacteria through an open wound? We will strive to make this part of our daily life as minimally noticeable as possible, but we can not completely hide it. So please, look away because you do have the option to avert your eyes. I'm sorry if you do not like blood but neither do we. We have to do this, while you do not have to look.
• Don’t assume that my child cannot do what other children do. We might monitor it more closely than other children, but they are still out there enjoying childhood (as they should!).  We may request special accommodations occasionally for them (I mean, insulin as a medication is not like a Tums. If they wait too long to eat, they can go unconscious or have a seizure), but that doesn’t mean they can’t play X, or do Y.  The US Supreme Court currently seats Sonia Sotomayor, who is a Type 1 diabetic. The Chicago Bears have Jay Cutler as their quarterback, also a Type 1 diabetic. Olympian Kris Freeman cross-country skied his way to Sochi in 2014. They can do just about everything your child can, with only some minor limitations later in life regarding choice of career (mainly active military and some driving occupations).

Note: Not all diabetic parents may feel this way about every single point. Some have amazing support systems already in place, have lived through it long enough they’ve adapted (finally), and/or have a personality type that was forged in iron.  A lot of us though are nodding our heads as we read through this and hope that those parents of non-diabetic children or those without children can begin to understand our world. We love our children and hope for a cure every single day. The day the cure is announced, listen for the whoops and screams originating from somewhere nearby you, as we race to tell our children that they can live their lives without fear of not waking up in the morning, or going through thousands of needle pokes per year, or being on a first-name basis with the local fire department/school superintendent/doctors’ office.  If you want to aid us in making that a reality, donate to www.jdrf.com.

Initial Diagnosis Must Haves

Someone we know of recently had their son diagnosed. I was thinking about what I would have like to have known would be needed once we arrived home. I slowly collected items over the first few months but it was all gathered from different ideas scattered all over the internet, as well as books I was reading in between my fuzzy eyed 2am blood glucose checks. So I thought I’d be super convenient and write a Best Of list for those parents who are facing the new reality of the diabetes life.

1. Sharps container (We get ours free at our local fire/health departments). I   also purchased a small one for the car.

2. Fast acting glucose: Capri Suns; Apple Juice boxes; Jelly Beans (1g per); Level Glucose gel packs; QuickSticks (Walgreens), & 15g Snacks (such as protein bars).

3. Supply on-the-go bag – We received a free one but quickly opted to get a makeup bag that had separated compartments.

4. Supply organizer for home counter– It’s like Caboodles makeup counter organizers were made for D supplies. (see other post where I outlined what we keep in ours)

5. Supply organizer for cabinet – I bought a plastic bin that had three layers. I stored extra syringes, lancets, meter control solution, extra meters, meter instruction manuals, extra alcohol swabs. (In the beginning before your stash grows, you will likely only need a bin. Later it’s a bin plus an entire cabinet in your kitchen)

6. D care items: Alcohol prep pads; syringes; insulin, testing strips, glucose meter, lancing device/lancets, ketone strips.
        a.  I am a big fan of Accucheck FastClix lancets. They come in a barrel so you never see the lancet. They come with the Accucheck Nano meter (which we received free from Endo).
        b.  We also like the Contour Next USB meter/Strips. The accuracy is among the best, the USB is nice to plug in, and it is conveniently on our insurance’s preferred list.

7. Other D care items we received/purchased: CalorieKing carb book (buy an extra for the car!); Precision Xtra Blood Ketone Meter/Strips (So you know exactly what the level of ketones are; especially helpful if your child isn’t potty trained); an insulin koozy which protects the insulin bottle if you drop it because it smells bad and is a very expensive mistake versus a $7 vial protector. (Amazon)

8. The Pink Panther book is great, but some places only give the smaller edition. We were lucky enough to also receive the expanded edition from a relative and highly recommend it. I would save the abbreviated version for other care providers who will need to learn a bit about diabetes but not all-day, every-day care. We also supplemented with Think Like a Pancreas; Guide to Accurate Carb Counting (both) by Gary Scheiner, CDE; Kids First, Diabetes Second by Leighann Calentine.

9. A decent digital scale. Soon you will be learning to carb count and until you are able to eyeball serving sizes in your sleep, you will need a scale with at least the tare feature, as well as ability to measure grams and ounces.

10. Lo/No Carb drinks. Your kiddo will suddenly have to account for every carbohydrate gram going into their mouth. Those previous cokes, Capri suns, and orange juices will have to wait for treatment of lows. The new game in town is lo/no carb drinks. Our favorites are Minute Maid’s Just 10 and Fruit Falls juice packs, Aquafina FlavorSplash, VitaminWater Zero, Powerade Zero, Crystal Light (powders or liquid), Mio, ICE flavored water, V8 Light Splash. You can of course get diet sodas, teas, etc that are low in carbs.

11. Carb log book. Personally, I hated the ones that came with the meters. I bought a spiral notebook style daily calendar. It has a lot more room to write. After a bit you learn that it’s essentially TIME; BG #; CARB #, INSULIN UNITS. You can add in variables next to it if you want, such as exercise, foods, etc.

12. A 3 ring binder (2" or larger) with clear page protectors. I made a cute one that I keep all the handouts from the endo in, such as carb counting basics, ketone info, daily logs they require before visits, illness guide, symptoms of high/low BG, etc.

Does this seem like a lot? No, it's really not too bad! Just a trip to local pharmacy (for D care supplies, your MUST must have), a Walmart/Target, and a foray on Amazon.

Organization is Key

 

One of the first things to do when getting started with a new D diagnosis is get organized. I started off with the travel pack they gave us at the Endocrinologist office, but our supplies rapidly started outgrowing it, not to mention how inconvenient some of those pockets are at 2am. So I headed out and picked up a few things and ordered online a TON of stuff. 

The first and BEST thing I could've initially purchased is the clear acrylic organizer by Caboodles. There are a bunch of different ones by that company, as well as I'm sure competitors, but this one just fits our D stuff so well. This one was about $16 at Target in the Beauty/Health section.


In that organizer you will find: 

• Pen needles & 3/10 syringes.
• Glucose meter, strips, and Calorie King nutritional book.
• Alcohol swabs, box of FastClix lancets, box of Precision Xtra blood ketone strips and meter.
• In the individual cubbies are: Lantus (in a green koozie), Humalog Luxura pen; FastClix Lancing device; Sharpie; Humalog bottle koozie; Ketostix; glucose meter control solution. Not exactly lipsticks but what can you do?

The other must haves were: (Shown in Top Picture)

• Sharps container (free pick up/drop off in my county at the local health department/fire stations)
• A by-HOUR daily calendar (b/c the log books they give you just don't leave a lot of room for writing; found on clearance at Target for $5)
• Food scale with tare and g/oz/lb/kg options (EatSmart Precision Pro Digital; $25, Amazon.com)
• The aforementioned insulin koozies which will save you easy money b/c dropping 1 vial of insulin is EXPENSIVE (Securitee Blanket Vial Protectors, $7/each at Amazon.com)
• The aforementioned CalorieKing Calorie, Fat & Carbohydrate Counter is a MUST, MUST for proper D care. I received one free from the Endo but purchased others for babysitter/grandma, grandma #2, main car, etc. ($5, Amazon.com)

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Eventually our daily needs stash was pared down, so I went on to the next find: IKEA 

Ikealand was kind enough to make these kitchen accessories that are sort of perfect for D supplies. The little steel organizer bar allows you to pick the perfect containers to hang, which I selected two flatware caddies and a flat bottom wire basket. Caddy #1 gets alcohol pads; Caddy #2 (usually) holds a fast acting gel, pens/sharpies, Crystal Light liquid and anti-itch cream if we need it after a site change. The wire basket is a catch-all with lancets, blood meter supplies, calculator, insulin, ketone strips, pump clips, etc. It freed up the counter to throw the food scale and logbook underneath it. Nice, neat, organized, and ACCESSIBLE. 

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Other Important Items: 

• 3 tier plastic bin for the extra items like swabs, lancets, blood glucose strips, instruction manuals, extra meters/lancing devices, needles, etc. (I did the snap-by-layer kind but the drawer kind could also work for you; I liked mine b/c the top layer had multiple compartments to organize the smaller stuff, and I didn't have to worry about items getting stuck/jammed in the drawers.). Once we started accumulating things, this went into a kitchen cabinet along with the gobs of pump and CGM supplies. 
• Small Cooler (Ours is the Icy Diamond Small Insulated Tote; $21 at Amazon.com)
• Binder for all the D-paperwork. I used clear plastic sleeves to easily flip through them. It's got everything from the Doctor's info to the free foods (under 5g) that she is allowed, to insurance letters and RX info. I decorated mine with some snazzy scrapbooking paper and glitter letters I had already on hand.

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Vacation worries were solved when I stumbled across the Joy Mangano XL Beauty case. This thing is like the Cadillac of organizers. I did a test run with things still in boxes and ended up with room to spare. The large section had 6+ Dexcom (dexcom.com) sensors alone (hard to see) and I could've added plenty on top. When we took a cross-country trip to L.A., I was able to use this perfectly at the airport because the sections velcro on/off. Non-scannable items in one packet to hand to security, one packet had food/drink for plane ride, and the other 2 were for scannable medical supplies. It folds into around 12"x6"x6" with a handle and since it would be all medical supplies within it, does not count towards your carry-on luggage tally. 

Joy Mangano XL Beauty case

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Preschool?

Found this adorable toddler backpack by Skip Hop, which the teacher would keep. A Vera Bradley ID case on a carbinder is perfect for Dexcom receivers. The middle section has a pencil holder with her Glucagon, jellybeans, fast acting gel, glucose tablets, juice, etc. The front pocket holds her meter kit, pump remote, ketone meter/strips, and her data phone. Side pocket holds a water bottle (even the tall reusable Contigo's). 

So there you have it, a bit of insight into how we started out organizing, and what we do now that we are years into it. Disclaimer: Aside from being a Dexcom Warrior, none of the aforementioned products are affiliated with me/this blog in any way.