Raising Money while Lowering Blood Sugar

Our local chapter of JDRF held its' charity gala this past weekend. While this was their 10th annual Imagine Gala, this was our first time attending. We were blessed to be invited to a corporate sponsor table (Charles Schwab for the win!). I was thrilled to be attending, and my husband and I got all dolled up to attend a special "grown-ups" night. I had a new dress, did my hair and makeup, my husband Youtube'd how to tie a tie properly. We drove the 45 minutes to the venue, the lovely Loews Portofino Bay. Let me tell you, what a nice event. Silk aerialists, live band, Dr. Nicole Johnson, a fast-paced live auction.

What I wasn't expecting in all this glitz and glamour was that my daughter would have some kind of excitement, adrenaline, or otherwise freak occurrence with her blood sugars while we were gone. While eating the first course, I get a text from my mother (our babysitter for the night), saying that M's BG was 440. Crud, what did she have for dinner (PB&J). Did she get the proper dose via the pump? Did we give her a proper pre-bolus time for white bread? We hadn't checked the Nightscout yet to realize that her blood sugars were going off the charts (parent fail). My husband walks my mother through giving insulin on the new pump and we finish our course. 20 minutes later my mother is calling me to tell me that her blood sugar is now 561! That is literally the highest reading she's ever had, diagnosis included. My husband is ready to ditch the gala and go home, but I know that it's a long drive home and immediate action is needed. So I step out of the room, leaving my sea bass dinner behind, and walk her through the steps to give a manual injection, something we haven't had to do in over 3 years. My poor mother had to deal with a crying M, who doesn't remember the MDI days and only knows it's a "shot". Then she has to check blood ketones, which apparently throws her threw a loop because she doesn't realize there are separate meters for ketones vs. our normal BG checks. After figuring out why the "meter" isn't accepting the strip, we get it sorted out and luckily there are no ketones yet. My sea bass is gone from the table,  I owe my daughter a new toy, but at least we have the insulin on board. Crisis averted?

Fast-forward to one hour later. A blip in time, and my mom texts to tell us that my daughter's BG is 158 already, with over 2 units of insulin on board still. Nightscout is down for some reason, so we can't see the trend ourselves. So now it's the scramble to give her a meals worth of carbs to make sure she doesn't crash into a low. $650,000 later, the gala is ending and we head home to relieve my mom. A report of a 68 means even more juice. We get home and end up giving her even more carbs to get her through the night.

It's nights like these, while literally trying to raise money for this disease, that remind us WHY it is so important to forge on towards a cure. 

Changing Pumps

T1D parents know heartbreak, it's practically a certificate that is handed to you the day your child is diagnosed. There are additional little heartaches throughout the years....those times that your child is too high and can't have a particular treat, the times that a pump site fails early and you unexpectedly have to change a site on a crying child, the nights you have to wake your sleeping child to ingest sugars so that they can survive the night.

But we recently encountered one that made my heart shear a bit more. Our first case of bullying.

In this case, it was due to her pump. My daughter is 5 and is currently in Kindergarten. Although her class is very supportive (the teacher's own kid has T1D), unfortunately she is exposed to other, older children who have not been taught about T1D. So at P.E., she told us that she was being called names by 2nd graders. The standout of those names was "octo-tube". (I can't go harass all the kids at the school for hurting my daughter's feelings y'all. Well, I could, but I choose not to because I want to be able to step foot on the school campus.) She was on the Animas Ping, which to that point 3+ years in, had been a great pump to us. We had originally looked at the tubeless Omnipod, but at 24 months old, her basal rates were not high enough for their minimum basal rates. The Ping was fantastic with its' remote so we didn't have to hold down a child to give insulin doses. It was waterproof, it was able to give those microdoses, it was pink. But what it wasn't was as invisible as my daughter wished it to be. Her little fanny pack holding the pump was ever present, and her tube was often found circling her waist. I wouldn't change our decision to go with it because it was what we needed at the time. But M is now old enough to understand more about the disease, more about social interactions, more about shame and humiliation. She expressed that she liked the Omnipod that she was seeing other girls in a local diabetes group have. She liked that there was no tube and that she could hide it under clothes if she wanted to.

I can't change diabetes, but this was something I COULD change.

So I did. I "cut the cord". I cancelled the pending order for Animas supplies. I called her insurance company to check for any limitations in coverage for Omnipod. I called Omnipod and filled out the benefits check. Within a week, I had the Omnipod sitting in my hands, and a week after that, we had pump class with the endo's office and were active on it. The cost? $199.99 with Omnipod's special program for people like us wanting to switch to tubeless while they have an active warranty for a tubed pump. We have 8 months left on our warranty with Animas (and had just recently been issued a replacement due to some screen issues), so now we have a warrantied pump through Omnipod for 2 years, which will bring us into the end of 2018. I am hoping that (real) Artificial Pancreas's will be FDA approved for her age by then and we can use our insurance to purchase one. (No Medtronic, your 670g is NOT a "real" AP).

 Of course I had to immediately paint the pods. Because I have a nail polish addiction (thanks Julep!), I had a ton of colors. Add in some stickers, and I had a somewhat cute collection to get her started. I was able to surprise her after school, and she got in on helping to paint a few as well. I also discovered I am not as good of an artist as I thought :/

No Vacation from Diabetes

A year and a half ago, we booked a bucket-list trip to Alaska. Being from Florida, we hadn't traveled so far for a vacation or been somewhere quite as cold. We got lucky and were able to travel with my mother, as well as my best friend and her family. In fact, we were able to get aft balcony cabins side by side right on the back of the boat. A charmed life it seems, until you factor in the unwanted tag-along guest, diabetes. Airport security is a nightmare as I receive pat down after pat down and scolds for bringing liquids. I am within our rights to bring shelf-stable milk to get my daughter through a 6 hour flight, but apparently this is inconvenient for TSA to check and I should have brought open containers instead. (Yes, let me then have to bring ice packs, a cooler, additional bottles, etc just so you can save yourself the hassle of processing a swab sample). Thankfully the flight is fairly uneventful and we land on time. (A whole other story about the trip home with lightning delays).

Once in Seattle, we hop on the Link, go check into our hotel, and head out to explore. We end up in the Pike Place market, and sit down to eat. I see M acting tired and decide to refrain from pre-bolusing her meal. Score 1 for mom intuition! She crashes while we are waiting for our food. As in, could pick her head up off the table and it would fall down kind-of crash. She ends up having to be carried throughout the marketplace and sleeps for over an hour. All I could think about was thank goodness we didn't bolus her for all those carbs, because she was out-out.

Our first port stop is in Juneau, AK, where I've booked a canoe trip on Lake Medenhall, where we will paddle up to Medenhall Glacier and get an up-close view, as well as Nugget Falls. Of course being a 5 year old diabetic, M ends up having to go to the bathroom at our Nugget Falls pit stop, so we teach her the intricacies of pottying over the side of a rock.

Nugget Falls

During our paddling session, my husband realizes that her Contigo water bottle has worked its way out of his pocket and dropped off the side of the canoe....somewhere.in.the.lake. M starts to freak out about how she won't have her water bottle to lower her blood sugars. I mean, why is this fair in life that those are the worries for my 5 year old? Even after assuring her that we will get a new one ASAP, she continues to scold her father about losing it. I let the guide know to keep an eye out for it on the off-chance we come across it somehow on our way back, but considering the size of the lake, know it's a lost cause. Close to shore, we see an otter, which is extremely rare because the silt from the glacier makes this an inhospitable environment for life, so nothing grows. If nothing grows, there is no food, and no food chain. But once in awhile a salmon makes it from an adjoining river, and the otter follows, and we get a sighting like we did. We land on shore, take off our gear, and start to walk back to the bus when the guide runs up to us to let us know that our water bottle has magically appeared on the shoreline. My 5 year old is now convinced that the otter brought it back to her. (More likely a kayaker, but whatever).

Lake Medenhall

While on the cruise, we decide to take M to the kid's club. They give phones to parents of D kids, so that they can tell us to come back if needed. So of course, this happens nearly every time we drop her off. We have to pull her out, give her a snack, let her go back in.

Staving off a possible low

On our trip into Ketchikan to ship home some fish, we have a low.

On our car trip into the Yukon, we have a million potty breaks, some of which are without real bathrooms again. My mom gets to introduce her to camping mode.

British Columbia/Yukon Territory

This was our first real vacation with M since her diagnosis almost 4 years ago. I felt so intimidated by traveling with D on board, and couldn't justify the cost of a trip when I wasn't sure if we would be able to enjoy ourselves. But this trip changed our minds. Although we didn't get a vacation from diabetes, we got away from the day to day stressors of every other part of life, to make this the trip of a lifetime. It was cold, but we didn't have any insulin issues. TSA stinks, but we made our flights. We needed lots of insulin, but my daughter ate everything she wanted on the ship, and ran those servers with her demands of yogurt and ice cream. She loved the kids club, and I was even able to sneak away for a few hours to go read in the library. Sure, we had an entire bag just dedicated to our D supplies, but what's an extra bag when you can have a view like this?

Johns Hopkins Glacier, Glacier Bay

Hollywood Starlets!

I have repeatedly said it, but guess what?! I LOVE Dexcom! Recently we (my daughter M and I) were given the opportunity to apply to be on their new commercial, to air in June 2016. Phase after phase we passed, until we got the final notification that we were selected to appear in the commercial! 

Within a week, we flew from our home in Florida to Los Angeles, a tidy little 5 hour non-stop flight with a 4 year old. Yippee!! We were shuttled to our hotel, the W in Hollywood, which was so.very.nice, so it was a treat to stay there. 

The W in Hollywood

That night, I met the rest of the patients who would be appearing in the commercial, other testimonials, some of the production team, and a few Dexcom employees. One of these employees was Mike Bloom, VP of Global Marketing. It was meeting him that truly helped my love for Dexcom grow. He spoke of patients being on a CGM system, regardless of whether it is Dexcom or not. I questioned him, thinking it seemed counter-intuitive for someone in charge of marketing a specific CGM to be advocating for the use of ANY CGM. But that is the kind of people at Dexcom, ones who care more about what is best for the patient than the bottom line. Sure, it's great if the patient chooses Dexcom, but he emphasized that any CGM is better than none. And that right there folks is a class-act. 

Then he said music to my ears - "I'd love to put you in touch with the Dexcom insurance team to talk about how to improve appeals." This would be a collaboration where we might learn from each other in order to help a larger amount of people gain approval for this life-changing device, so of course I jumped all over the opportunity. From my earlier posts, you know that I am a heavy advocate for insurance appeal help. In the week surrounding the trip I completed 8 insurance appeals for others, in addition to several more guidance sessions where I was able to point the patient towards getting coverage without needing an appeal. In just one week, with just one single volunteer. Imagine all the others who don't go online, who don't ask for help, who don't happen to get referred to me, who don't know that appealing can work! This is literally the tip of the iceberg for those needing help, so the opportunity to talk to Dexcom on a peer-to-peer basis about improving coverage for others is something I desperately wished for but didn't think would/could happen. 

The following day was the commercial shoot, whereas M was attacked by a horde of ants in her pants. This girl was so amped up that she literally would not stay still! So if you see a little girl in the Dexcom commercial that won't stop wiggling, just know that she was only 4 and was more interested in the ball off-camera than standing next to her boring mother! She was also enamored of fellow Dexcom Warrior Katelyn Prominski, who is a professional dancer with T1D.....and who was dancing in the shoot... and therefore M decided she'd also like to dance around during the shoot - haha!

While in studio, Kris Freeman, Olympic cross-country skier arrived to film, so of course I had to get a photo op with this T1D star! M was over it by that point, so grabbed her for a quick photo before running to catch our ride back to the hotel.

Kris Freeman, Olympian

After we were done with the shoot, we were able to spend the rest of the time in L.A. having fun. For a parent alone with a 4 year old over 2,500 miles away from home, this was basically spent riding the Metro, walking the Hollywood Walk of Fame, going to Trader Joe's & Starbucks way too many times, and being pulled into any store that happened to have a Disney character in the window. Of course there was a Dexcom and a pump site change while there, so I had to get a bit creative with the cold packs. Mini-fridge was stocked, so grabbed a cold bottle of Moet & Chandon and voila! success! 

All in all, this experience was amazing. The Dexcom and Hawthorne Direct (production company) treated M like a little star, which for a 4 year old was beyond thrilling. It was nice to have the focus of her having Type 1 diabetes be a positive experience for once. A special thank you to Dexcom for giving real users of their product a chance to show our love and appreciation for this life-changing device!


Updated: The commercial is out!! Direct link on the Dexcom website

Or view it here:

For more information on Dexcom, visit www.dexcom.com. 

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).

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.

Walk to Cure Diabetes

 

It's time to pump up the excitement for the 2014 Walk to Cure Diabetes! JDRF holds walks all over the country to benefit the research to not only improve, but CURE type 1 diabetes. This is our first year doing the walk. Our Orlando team is named Benjamins for Miki's Mouseketeers, in homage to my daughter M and my cousin Ben, who passed away at age 17 from T1D complications. I made up the above picture to kick-start my fundraising campaign. This photo, taken less than 2 weeks after her diagnosis, really shows exactly why I am so invested in this. She is pure joy. If you would like to donate, please click on the above link to be directed to our page. Donations are due before June 30, 2014.

 

 

UPDATE: We started out with a goal of $1,000. We ended up with $3,075 as of the walk date. We had a few business associates donate, as well as our wonderful friends and family. Women I went to high school with (and haven't seen in over a decade), as well as my MIL's gardening internet club members all donated. I am overwhelmed by the generosity of the emotional and financial support we received for this year's walk.

THANKFUL

     In light of the month of November, as well as Diabetes Awareness Month, I wanted to take a moment to say the things that I am most thankful for, as related to diabetes. (Of course, 30 things for the 30 days of November).

I AM THANKFUL:

1. That my husband has a job that enables him to take time as needed to go to Dr. appointments and the miscellaneous things that diabetes throws at us. Years of working 50-60 hours per week are now paying off.
2. That my husband has a job that enables me to be a stay at home mom and allows us to have the ability to pay for the best care available for diabetes.
3. For our pediatric endocrinologist and his diabetes education team. Every single person I have met in the local D community or fellow doctor raves about him and for good reason. Unfortunately I’ve heard he’s stopped taking on new patients because his existing ones are so numerous. (Not for sure though). Also one of his diabetes educators is a fellow D-mom, which makes me really feel that someone TRULY understands what we are going through. She was also our nurse when M was diagnosed, as she was in her last weeks in the Special Care unit before she left for the pediatric endocrinology office.
4. For the Dexcom technology which has already saved my daughter’s life at least once. If only this had been around 13 years ago, my cousin’s life wouldn’t have been forfeited to D.
5. That my daughter was able to receive the pump less than 2 months into her diagnosis because we weren’t able to dose her properly before.
6. That I was already pregnant when she was diagnosed, because I always wanted several children and I don’t know that my husband would have agreed to a second child after M’s diagnosis. It is an emotional and financial strain you cannot be prepared for, one that you want to give everything for and leaves you in doubt that you have the strength for anything else.
7. For the TrialNet program that will test our newest child for the possibility of D.
8. Although she is so little, in a way I am thankful that she did get this so young because she will never know a life without it so everything will be a way of life for her instead of a huge change.
9. That she is rather protected in her young age against diabetic complications from high blood sugar. We are still figuring out dosing and foods and would be that much more paranoid about everything if there was a huge possibility that she could have permanent damage for our mistakes.
10. That we even have insulin. Before 1922 my daughter would most definitely already be in the grave right now. She is such a bright light in our lives, I hope I never see it eliminated.
11. That my husband is on top of everything with d-care. I trust him to make decisions in her care as much as I trust myself. With as much stress as there is in having a toddler with D, it is such a relief to be able to escape the house on occasion and not worry about anything d-related.
12. That my daughter is a good eater, which means that we can bolus her before a meal and know that in one way or another we will meet her carb count. Toddler’s are picky eaters but she is pretty steadfast on eating a variety of food and a good quantity of it.
13. That she is as patient with us as she is. She lets us do her blood checks 90% of the time with no fuss, and the other 10% is normal toddler behavior of not wanting to sit still while we take her out of the action for a check.
14. That my family knew all about diabetes before this. Unfortunately my cousin passed away from a low in 2000, after which my mother was a fanatic about any d-like symptoms. She even kept the urine strips in the house to test my younger brothers on occasion. So I knew the signs of diabetes and it helped me diagnose my own daughter.
15. For a great online community of fellow d-moms and dads who share advice. The early months were like a black hole for us and we spent a lot of time online researching about the disease, tips on care, advice on products, etc.
16. That we are getting free speech therapy through a state program for developmental delays. Hopefully this will get her back on track from any delays D contributed to.
17. That my newborn daughter is such a good baby. Minimal fuss and a great sleeper. Since week 5 she has been sleeping 7-9 hours per night. It is such a relief, especially since M didn’t sleep more than 4 hours straight until nearly 6 months old. It allows me to stay (relatively) sane and not sleep deprived, which would make it so much harder to take care of M.
18. For our extended family. My husband’s cousin sent us the expanded Pink Panther D book after we finished the abbreviated version our Endo gave us at diagnosis. My aunts and uncles all do fundraising for JDRF, and have done so for over ten years already. One aunt is on the board of her local JDRF chapter.
19. That I previously held a job in a medical office, where I did medical insurance and appeals. It has aided me so many times when dealing with hospitals, Dr. offices, and insurance companies. You cannot believe how many denials I’ve had to fight in the past while working, which in turn sharpened my skills for personal use. Also now that our health coverage is being cancelled due to Obamacare, it is aiding me in knowing exactly what pros and cons each replacement plan has.
20. For the other parents of Type 1 kids who have developed products for D kids, such as insulin pump pouches in cute fabrics fitted to their tiny waists or custom D alert bracelets. Adult sizes and patterns just don’t work for kids.
21. For the restaurants that actually provide carbohydrates counts for their foods. (Cracker Barrel, you are really disappointing).  Some are really great at this, even though their food isn’t super great for you. McDonalds labels EVERY item in the Happy Meals with carb info, and IHop has a nutritional menu you can ask for. Chikfila even stores their carb info inside their registers, with a printout available for any item on their menu. Others have the information on their websites or have provided it to other websites. Hardest are the mom-pop type places since nothing is standardized or analyzed.
22. For organizing products that can be used for D products. So far I’ve used a Caboodles makeup organizer as our main D supply station (see other post), a makeup bag for our D supplies on the go, another makeup bag for our emergency carb stash in our car. Glass tumblers we use to amplify the vibrations of our Dexcom alerts, and a three-tier plastic container holds extra pump batteries, syringes, test strip solution, and extra meters.
23. For our local fire and health departments, who provide sharps containers free of charge. We can also drop them off with no charge.
24. For the website I just stumbled across, safesittings.com. I don’t know how I didn’t find this sooner than I did with all my research on Type 1 diabetes and resources for it. We don’t have a lot of sitter options so this could well prove a godsend. We have already started initiating contact with a local young woman with Type 1 to become our backup sitter.
25. That my mom moved up to our area last year. She couldn’t stand not being nearby after M was born, so she picked up and left her house, job, and community that she had been a part of for over 25 years. Four hour drives were way too much and I am so happy to have her here for support.
26. That my husband’s mom is so committed to being able to keep M for future grandma visits that she even started counting her own carbs to be able to better learn D care.
27. For the pharmaceutical companies who supply vast quantities of samples to their reps. We have received insulin, test meters, a ketone meter, recipe books, and more free of charge. We spend so much money on D care that it is nice to get something for free! (Even if it’s only so we spend money on their products in the future….yes, I have a marketing degree, I know how that works lol).
28. That we live in a country with great access to care, as well as economic prosperity. Type 1 kills untold numbers of kids in poor countries because their parents do not have the ability to see a doctor for a diagnosis. They do not have the internet to discover the cause on their own. If they are fortunate enough not to die of DKA before they are diagnosed, then they may not have the money to pay for the newer insulin which is more predictable, or perhaps any insulin at all. They may not have the money to pay for test strips, let alone insulin pumps and CGM’s. I shudder at the thought of not having every single thing necessary to care for my daughter.
29. For smartphones and the ability to peruse the internet in a restaurant, or out and about. Having access to carb counts in foods, or contact numbers not previously stored in the phone are so very helpful. Bye-bye pager, I haven’t missed you at all since you’ve been gone.
30. For my friends who have supported us through this diagnosis. I can vent on Facebook or over the phone and know that my friends will be there. Even having a distant friend clicking “Like” on a post is a great comfort because it means that people are listening and understanding what I am going through. When you feel alone on an island, it helps to know there are at least people on the mainland still waving to you.