Milestones

***Two months. It’s been two months since my last post. I’ve been meaning to write about this or about that, but ultimately life got in the way. I think it’s my longest break between posts. I don’t know how to feel about it. I miss more regular blogging but it’s still not happening for whatever reason.

***Braces, round two. No one is excited about it. Between restrictions that come with braces (no hard or chewy foods, among other things) and restrictions that come with Celiac, V gets, well, more food restrictions. And pain and suffering. Because braces are painful and annoying. Yay…Nope.

Enjoying final corn on the cob before braces.

***1:5. This is V’s shiny new daytime insulin to carb ratio. To translate from diabetes to real world, this means that for every 5 g. of carbs V needs to give 1 unit of insulin. It is a LOT of insulin. It used to be around 1:15 back in the day. This means a few things. One, she is receiving much higher insulin dosages with a much smaller margin for error. If we overestimate the carbs, she is at a much higher risk of a bad low. If we underestimate, her BG can shoot through the roof. Both happened. We are learning to adapt and deal with it. Secondly, we are going through insulin like water. At V’s next Endo appointment will need to address changing the Rx to increase the amount because running out of insulin is about the worst nightmare anyone with diabetes can experience. Thirdly, the pods are only lasting about two days. They can last up to three, if they don’t fall off or run out of insulin. A pod can hold a maximum of 200 units. She usually burns through about that much in a couple of days now. Again, to put it in perspective, in the beginning we used to fill it up with about 75-80 units and it would last three days with some insulin to spare. Fourth, this means that unless the food is truly carb-free, such as meats and cheese, she needs to cover it with insulin. There is no more such thing is a little bite of this or a little bite of that. There is no more not needing to bolus for low carb foods that are 5 g. of carbs or less. Got carbs? Better break out some insulin.

Why so much insulin now? In one word, puberty. Raging hormones, growth, changes. And it may get worse before gets better. And speaking of worse…

***Highest A1C since diagnosis. It is what it is. And it is not really all that bad of a number. Still, it’s higher than desired. Why? In one word, puberty. We increase insulin dosages, things stabilize for a few days, and then V starts going up again. Up up up she goes and we can’t seem to catch up. But then she’ll have random days of lows, lows, lows. It’s hard to find patterns. Sometimes there are no patterns. So, FU puberty.

***Babysitter, officially. She’s 12. She got her CPR/First Aid Certification. She attended babysitting camp. I helped her draft her very first real resume. She has been helping out with neighbors’ kids for quite a while, and now she is ready for bigger parent helper/babysitting jobs.

 

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Lesson learned

As we drove into a small town for V’s travel swim meet, we passed a hospital with the ER. I took a note of it. I don’t know what non-T1D parents notice when they come somewhere new. Architecture? Restaurants? Me, I want to know where the hospital is. Because while we never needed it before, you never know…

This was going to be a fun weekend, V’s first travel swim meet. It was in a small town in a middle of nowhere, about two-hour drive from home. We decided to make it a girls’ trip, just V and I, and V was excited to spend time with her teammates.

As I packed all the diacrap for the trip, I followed the usual formula of packing extras to be prepared for pods to fail, Dexcom sensors to get ripped off, insulin to be accidentally left in the sun to go bad, and all other imaginable and unimaginable catastrophes that could wreak havoc with diabetes management. But as I picked up a bottle of Zofran, I set it down. Nah. We’ll only be a couple of hours away. What are the chances we will need it?

The first day of the meet went well. In the afternoon, we retreated to our hotel room to rest. Then we headed out to meet the rest of the team for dinner in a nearby restaurant. There were not many restaurant options. I fretted about being able to get something gluten-free for V, called the restaurant, confirmed that our choices were slim. V was uncharacteristically indifferent about it. “I’m not really that hungry.” She was perfectly happy to have a soda and then we’d get her something else from a supermarket next door. As we sat down and started to look at the menu, V said that her stomach was hurting a little and she did not want to drink even soda. Then she got up and disappeared for a few minutes. When she came back she motioned to me to come outside to talk and informed me that her stomach was hurting, so she went to the bathroom and threw up. But now she was feeling better, so she’ll just take it easy.

Well, crap. I started wondering if she possibly got “glutened” during the meet. I should not have allowed her to have those nachos. Yes, I checked the ingredients and it seemed OK, but I really should not have. But it’s strange that she’d react to strongly to gluten, she does not normally feel anything. Still, I shrugged it off. V went back to her table with other kids, I ordered my meal and started eating. I noticed that V made another trip to the bathroom. And another one. And one more. And one more still. She was trying to hang in there but clearly she was not feeling well. I ate my food without much chewing or tasting  so we could leave quickly. I was still clinging to hope that something V ate, combined with the heat and physical exertion, did not agree with her, and that it would pass if she could get some rest. Soon enough I was forced to face the fact: this was not accidental glutening. It was not even food poisoning. V was experiencing the worst GI virus she’s ever had in her life.

Once in the comfort of our hotel room, she began vomiting violently and frequently, multiple times per hour. Her stomach was already empty from the five rounds of vomiting in the restaurant. I begged her to drink some water but she’d have the hardest time with it. This was typical for a GI virus – she’s never able to keep anything down. Her other trademark symptom is crashing BG. Hence we always keep Zofran because it does a great job of taking the edge off of nausea and vomiting so that V can at least hydrate and get some sugar in to stabilize BG. Except that magic pill bottle was sitting on the dresser in her room, two hours away. Well, fuck. I ran out to the store next door to try to find something to decrease nausea. Came back with a bottle of Pepto Bismol. Forced one dose into V with a predictable result: it came out in a spectacular projectile vomit a few minutes later.

For the moment BG was staying stable, so I reached for the ketone meter. V is not prone to developing high ketones. Except when she has a GI virus. Then her ketones can rise rather rapidly and we always monitor it very closely. Whenever V has a GI virus, it is always a wait and see if we need to head to the ER because the danger of DKA is very real. I put the test strip in the meter and…nothing. The meter battery was dead. OMFG. We had not used it in months and I did not bother to test it before we left. Now we have crossed into a much scarier territory. If I cannot monitor ketones, it’s a lot harder to tell if it’s safe to continue managing symptoms on our own or if/when we should head to the ER.

I don’t panic easily but I started to feel really worried. I asked for any tips on my local T1D families Facebook group and someone suggested if I could find a meter battery somewhere. I went to the front desk and asked if by any chance they had the battery we needed. They did not, but they told me I could buy it in a dollar store a mile or two down the road. And it was still open! I decided that leaving V alone with a puke bucket for 15-20 minutes was a risk worth taking and rushed there as quickly as I could. Once I had a functioning ketone meter, I could breathe a little and go back to “wait and see”.

Indeed, ketones started to creep up. Miraculously, BG was holding stable. And then V started to feel thirsty – another completely unexpected turn of events. Normally, under similar circumstances she does not want to touch any liquid with a ten foot pole. Initially I was really excited and encouraged her to drink. Insulin and liquids are the winning combination to avoid DKA and safely ride out the GI nastiness. But she was drinking voraciously and promptly vomiting everything up. I started restricting her water intake. She was begging me for more. I was begging her to take small sips so that at least some of the water would stay in and get absorbed. She tried to sneak into the bathroom to drink out of a faucet because she was so thirsty. I lost my shit and yelled at her because I was trying to keep her from going to the hospital!

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6 water bottles downed in that many hours

In between V’s projectile vomiting, I would replace the trash can liner and throw the one full of liquid in the big trash can outside. I would wash my hands compulsively. I went back to the supermarket next door to buy more water. Then I would Google things. I Googled directions to the ER. I double checked that they treated pediatric patients. I Googled how quickly the body starts to absorb water after drinking. (FYI, a bit of it becomes absorbed as quickly as in 5 minutes, but full absorption takes a lot longer.) I Googled signs and symptoms of dehydration. And I repeatedly kicked myself for not bringing Zofran with us. It’s only a quick little trip a couple of hours away, I said. What could possibly go wrong, I said. There will be no need for it, I said. And even if V got sick, we can always come home if we need to, I said.

Of course V was in no shape to embark on a two-hour drive home. We decided to try to ride out the night, as long as ketones and BG were cooperating. Ketones went up a little more but seemed under control. BG stayed on a higher side, so I administered insulin with abandon. V got a reprieve from vomiting for about four hours and we both were able to sleep a little. I was hoping that when she’d wake up she would feel better. Wrong. She eagerly continued to drink water and vomit it back up.

I talked to my husband and he headed out our way to bring us Zofran. It just so happened that he was taking our son to a BMX race in a nearby town, so he left earlier to come to us first. In the meantime, I decided to page Endocrinologist on call and consult. She confirmed that we were doing everything right, and together we came up with the plan. If Zofran worked to eliminate vomiting and reduce nausea, we could try to drive back home. Otherwise, we’d need to go to the hospital first and get V re-hydrated and stabilized before we could hit the road. Our drive back involved a long stretch of going through the desert with no facilities whatsoever. No stores, no bathrooms, no medical facilities of any kind. If V was not stable enough, driving back would be a really dangerous thing to do. I went to the hotel’s front desk, explained our situation, and received permission to take an extra hour to check out.

My husband arrived to the hotel at about 11 AM with Zofran. Let me tell you, this pill is fucking magic. With a single dose and within 15 minutes, the vomiting stopped. Completely and totally stopped. V was still feeling crappy but she was no longer puking. We waited an hour. No vomiting. Shortly after 12 Noon we got into the car and started our escape. We drove past the ER again. Another half hour later we went through another town with a hospital, so before we hit the freeway and the empty desert I asked V one more time if she felt well enough to continue. She assured me she did not feel like throwing up. I took a big breath and hit the accelerator. We arrived home two hours later without incident and V slept through almost the entire drive. We kept up with Zofran for another day or two. It took V a few days to fully recover, but there was not another single vomiting episode.

I don’t know how about you, but I learn best when I fall flat on my face and it really hurts. Then it is prudent to memorialize the lesson and the pain because I will NEVER EVER LEAVE ON ANY TRIP WITHOUT ZOFRAN AGAIN. Never. Fucking. Ever. We got so lucky that somehow V’s BG stayed stable and din’t crash, so we did not need to get extra sugars into her, which would have been impossible if she could not keep anything down. We got so lucky that I was able to resurrect the ketone meter and monitor ketones, and that they did not spike too much. We got so lucky that my husband was able to come to our rescue. We narrowly avoided the ER visit, with all the lovely invasive interventions that would have followed, in an unfamiliar town, with doctors having no access to V’s medical history, and with possibly questionable knowledge and experience with T1D.

Lesson learned.

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Recovering at home with best helpers ever

 

Diabetes Blog Week Throwback Thursday: What Brings Me Down

Today’s Prompt: Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I asked V what brings her down about living with diabetes. Without skipping a beat she said “Low blood sugar brings me down.” She’s a wiseass. Wonder who she takes after?
I asked her to give it some more thought. “Think about it. What gives you the sads?” After mulling it over, she said “When I can’t eat when my BG is high. My life revolves around food, so it gives me the sads.” And then she happily scampered away.

Perhaps it’s no use asking a 12-year-old what brings her down about living with diabetes when it’s the last thing on her mind. And to her credit often she does this whole T1D thing way better than us, adults. She’ll wonder from time to time how much easier life would be without diabetes. She’ll get annoyed and frustrated about having to deal with the hassle of it. A bad high will add a generous portion of extra upset and anger when she is already upset and angry. A bad low will make her feel really lousy. Sometimes there will be a painful pod or Dexcom change. But she keeps moving along and happily living her life. How I hope that it stays this way.

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I hope she keeps this joy forever and ever

As to what brings me down? I don’t go there too often. I stay away from “what ifs”, take things in stride, and laugh at diabetes whenever I have a chance. When I do go there, it’s not so much down as worried. Worried about bad lows and future complications. Worried about V giving up on her diabetes care as she navigates adolescence. Worried about V being able to maintain good health insurance and access to healthcare when she becomes an adult. Worried about her quality of life with diabetes.

It’s not so much down as defeated. Defeated when we do everything right and still don’t get desired results. Defeated when we can’t put a dent into our credit card debt because medical expenses are relentless. Defeated when that stubborn high BG won’t come down no matter how aggressively we treat it. Defeated when we work so hard to tighten control but the A1C won’t move anywhere but up.

It’s not so much down as angry. Angry every time I hear about a cure in mice. Angry about so much ignorance and misinformation about diabetes. Angry about diabetes and diabetics being the butt of everyone’s jokes. Angry about judgment and hate.

It’s not so much down as exhausted. Exhausted after being up at night because of V’s highs or lows. Exhausted from fighting with insurance. Exhausted from having to shlep to so many doctor’s appointments. Exhausted from having to think about diabetes 24/7.

While V is young, I carry these emotions for her. It is my job as a parent to lessen her burden and I do it gladly. But I can’t do it forever. It is her diabetes and eventually, sooner rather than later, all these burdens that come with it will become hers. It is the one thing that really brings me down. 

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My really pathetic attempt at whipped cream art, created on one of V’s diaversaries. The message spells “T1D Sucks”. Because it does.

 

Diabetes Blog Week Tuesday: The Cost of a Chronic Illness

Today’s prompt is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

For those of us living in the US, this is a hot, scary and depressing topic, especially considering current political climate and escalating insulin prices. Living with diabetes is expensive! In our family, we have three people living with chronic illness. We spend thousands every ear on medication, medical appointments and supplies. And we have good insurance! And don’t even get me started on the price of gluten-free food. I think I will save that rant for a separate post.

Once upon a time, before T1D and before we had kids, hubby and I tried a high-deductible plan. At that time we were pretty healthy, so we figured it was worth a shot. It was definitely a lot cheaper than a standard plan. Turned out that getting reimbursed for our upfront expenses took a really long time. They lost just about every claim we submitted. We eventually got our reimbursements, but knowing that we would have to front a significant amount of $ for even basic medical care really deterred us from seeing doctors. Thankfully nothing bad happened that year, but I clearly remember postponing appointments just so we would not have to deal with costs. How that we live with T1D and other chronic illnesses, I can’t imagine having to deal with a plan like this again. And yet, many people have to.

What advice do I have to share? Is moving an option? Somehow the rest of the developed world figured out how to provide affordable quality healthcare to their citizens.

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For those of us staying put, we need to organize and educate ourselves. First and foremost, do you understand the terms of your health insurance? How much is your monthly premium? Do you understand that the monthly premium does nothing except providing you with access to insurance, and that you are going to incur additional out-of-pocket costs? Do you know the difference between annual deductible and annual out of pocket maximum? What is your individual vs. family deductible? When does your deductible re-set? Do you know the difference between co-pay and co-insurance, and when you are charged one vs. the other? Are your medical supplies covered under pharmacy benefits or Durable Medical Equipment (DME)? What Rx is on the formulary and what meds won’t be covered? Do you have a separate deductible for your pharmacy benefits? Do you know who the in-network vs. out-of-network providers are? Do you know what procedures and equipment require pre-authorization? How often? How much is your ER copay?

Second, you need to advocate fiercely. Don’t take “no” for an answer. If you get a denial, appeal. Work with your doctors to document medical necessity. Learn the language, what to say, how to say it, and who to say it to, to get better results. Ask for help from your device reps – they often know how to get through the hurdles.

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Third, be strategic. We try to schedule medical appointments and supply orders strategically in the beginning of the year so that we can meet our family deductible spending the least amount of money possible. It worked well last year. This year it was a total fail. A similar strategy may work well toward the end of the year. If you met your deductible, and especially if you hit your annual out of pocket maximum for the year, stock up on those medications and supplies. Squeeze in that extra doctor’s appointment if you can/need to.

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Our little stockpile. Note the adorable doggie photobomb 🙂

Fourth, I’d tell you to be financially prepared and set some money aside for healthcare expenses. But I won’t tell you this. BECAUSE IF WE ALL HAD ENOUGH MONEY TO SET ASIDE TO PAY FOR OUR EXPENSIVE HEALTHCARE, MAYBE IT WOULD NOT BE SUCH AN ISSUE?! Yes, I just yelled. It makes my blood boil when some people insinuate that people with chronic health conditions don’t prioritize their healthcare expenses and instead spend money on stupid and unnecessary things. You know, like shiny new iPhones.

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Fifth, pride is stupid. If you need help, reach out. I belong to a vibrant and awesome group of local T1D families. At times people post on our Facebook page asking for a vial of insulin or some test strips to tide them over until their authorization goes through, or their insurance kicks in, or they get their paycheck. Other times people post giving away extras they no longer need. I’ve been on both giving and receiving end. Most T1D peeps will gladly help you out. I personally sleep a lot better at night knowing that if we are in a bind, I know who to ask for help.

Sixth, do your part in educating others about T1D and what it’s like to live with a “preexisting condition.” Help people understand the cost for someone with T1D just to stay alive. Your story and your voice matter. The better everyone can understand the human side of the cost of healthcare, the more we can achieve.

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