Diabetes Blog Week Friday: More Than Diabetes

Today’s prompt is:
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  

I love this topic! Screw diabetes. Instead, let’s talk about unrelated fun stuff and post gratuitous photos. Without further ado, here are some random facts about me and my T1d and gluten-free crew.

I’m a runner. I’m a very slow runner but I don’t care. I started running in 2009 and to my own amazement it became my hobby and my passion. I don’t know how I used to cope with life before I started running. So far I’ve completed 4 full marathons and 13 half marathons. I have no idea what my next race will be or when, but I’m sure it will happen sooner than later.

 

I love the ocean. I love being near, around, or in the ocean. I does not get old. When I was growing up, it was my dream to live by the ocean and now I’m living my dream. It’s also one of the reasons I love cruising. My favorite thing to do is sit on the balcony as we are sailing on the open ocean. It’s the best thing ever.

 

These two faces! We have the best doggies ever and we love them fiercely.

 

I love Start Trek TNG. Yes, Trekkie all the way. Shockingly, I don’t care about or watched Star Wars. I am probably the only person on Earth, I know. Don’t hate me, OK?

bSc4CQr

Love this quote!

 

Last but not least, I’ll leave you with our recent family picture. Taken on a cruise, of course 🙂

IMG_4488.JPG

 

This concludes 2017 Diabetes Blog Week. I have lots of catching up to do and can’t wait to read more posts over the weekend.

Advertisements

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.

IMG_4400.JPG

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. 

IMG_2224

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 Wednesday: The Blame Game

Today’s Prompts is: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

I’m pleased to say that we are very fortunate. We have a fantastic healthcare team and are surrounded by supportive friends, family and local T1D community. The only one really bad experience we had was at the water park last summer, when V was rudely confronted by a stranger who felt she was cutting the line and, since she did not look sick, did not have any reasons to have a disability pass. I wrote about it in detail in this post.  To be honest, I really don’t feel like revisiting it. When someone passes judgment inadvertently because of misinformation, but without an intent to be hurtful, I am more than happy to have a discussion. But there is no reasoning with a jerk and, aside from standing up to them, I’m not going to waste my time and energy with someone who has no desire to be supportive.

a2f8031a463bb57a50c0593445eeef65

I can, however, offer a few advanced tips to those who have to deal with us, crazy D-parents and our T1D offspring.

-Instead of asking “How is V’s diabetes?”,  ask “How is V doing with her diabetes?” When asked the former, my knew-jerk response is “Eh, it’s still there.” But even if I’m not trying to be a wiseass (hard to believe, I know), I don’t know how to answer this question. When you ask me how V is doing, I can give you an honest and specific answer. Often it’s “She has good days and bad days.” But sometimes I can share that we’ve hit a sweet spot and things have been relatively uneventful. Or that V is really struggling at the moment.

-Please don’t tell us that you “could never do it” – give shots, or count carbs, or poke fingers multiple times. If you life depended on it you would. Instead, you can say “All this sounds painful and scary and overwhelming.” And personally I take zero offense if you say that you are grateful your kids are healthy and don’t have to deal with any of this crap. No, seriously – feeling bad for us does not preclude you from feeling grateful that you don’t have to go through what we are going through. Trust me, we would not wish it on anyone.

-When V tells you she hates immunization shots, please don’t say in a very surprised tone “But shouldn’t you be used to shots by now?” First of all, have you seen a diabetes syringe? The needle is tiny and the shots are usually painless or sting just a bit. Now, compare it to a needle that is used for immunization shots. It’s a monster in comparison. Secondly, pump and CGM insertions involve needles too. They may not always be visible but they are bigger and they hurt. So the last thing V needs in her life is another shot. You can say just that.

-Last but not least, when you hear about another “breakthrough” or exciting discovery/tech development in the news, please curb your enthusiasm.

 

Diabetes Blog Week Monday: Diabetes and the Unexpected

It’s time for 8th annual Diabetes Blog Week! Thank you Karen of BitterSweet Diabetes for putting this together.

I need this #DBlogWeek badly. I haven’t been blogging much lately. I’ve been overwhelmed by various things in my life and blogging/social media presence/diabetes advocacy has taken a backseat. I am hoping that this week will provide an injection of fresh motivation and inspiration.

Today’s prompt is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The best way to prepare for the unexpected is to expect it. Ideally, you become clairvoyant and can accurately anticipate all future problems. In reality, we all learn from our mistakes. The main lesson I learned (or rather am continuously learning ) from my mistakes is to not leave without any supplies that we cannot do without for more than an hour, no matter where we are going, how close to home we will be, etc. We always carry extra supplies with us, except when I get stupid and forget about this rule. Like that day when I took V to her Endo appointment and didn’t bring her diabetes backpack. And of course her insulin pump’s pod failed there. Thankfully they were able to hook us up with an extra pod and a vial of insulin, though for a few minutes they worried that they ran out of spare pods. Or the time when I took V to a traveling swim meet 2 hrs away from home and decided to leave her Zofran behind. Because why all of a sudden would she get a stomach virus? Of course, she was hit with the worst stomach virus I’ve ever seen, and we were stuck overnight in a hotel room in the middle of nowhere, with V violently vomiting several times per hour, hardly able to keep any liquids down.  And the battery in the ketone meter was dead! We narrowly avoided a trip to the ER, only because I was able to find batteries for the ketone meter in a store nearby and my husband was able to drive to us and bring Zofran.

Cue our last vacation. I wrote earlier about the hassle of packing all diabetes stuff, or “diacrap”, as Rick aptly suggested in his comment. I packed enough pods for daily changes. Of course, who would expect that a pod would fail every day? They are supposed to last at least 2-3 days. Nevertheless, I was not taking any chances. Sure enough, we had to change a few pods in rapid succession. One day involved two pod changes in 3 hours.

The truly unexpected part? One of the pods could not handle all of the vacation excitement and fell apart. Like, literally. It was quite amazing. These things are bomb proof. They are sturdy, waterproof, designed for all kinds of abuse, and if anyone ever tried to break one apart to see what’s inside, they will testify that it is not a simple tasks. And yet, while the bottom part was still attached to V’s arm via adhesive, this happened…
IMG_4370

What on Earth caused this? We have no idea. We are sending this pod back to Insulet for them to examine and figure out. Perhaps it could not handle the excitement of the FlowRider?

IMG_4445

And here is a close-up of what a broken pod looks like. You are welcome 🙂

IMG_4665

Diabetes Blog Week: Tips and Tricks

Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

I am not the most organized person, to put it gently. But now we have too much diabetes paraphernalia and it has to be organized somehow. Below are some of my favorite things that help me keep diabetes stuff more organized  less disorganized.

This Lazy Susan office supply organizer is great for keeping lots of diabetes things in one place. It holds our wipes, lancets, strips, tape and more. It can hold infusion sets but it’s a tight fit for pods a tad too small for Dexcom sensors. I can jam a few in but it’s not really worth it, so we keep those separately. Someone on my local T1D Facebook page recommended this organizer and it’s worked great for us. Here is it on Amazon for $22, not too bad.

IMG_2996

It took some trial and error to figure out how to carry our back-up supplies. We are often on the go and there have been many times we had to change a pod unexpectedly, or check for ketones, or fix/attach/detach/mcgyver something, so we need to carry lots of crap with us. We tried different baggies and cases but nothing really worked. Then one day I saw one of my fellow D-Mom friends (or, as Katy brilliantly recommends, a D-Unit) with this little medical case. I ran, not walked – RAN – to Target to buy it. Best $5 purchase ever. It changed my life.

On the outside, it’s a perfect size, unassuming, yet its purpose is clear, it zips closed so that nothing falls out, it has a handy handle and even a touch of pizzazz.

IMG_2997

On the inside, it is roomy and functional, has different compartments (BTW I think I have a borderline unhealthy love for compartments and zipped pockets), and fits all our necessary backup stuff: insulin, syringes, pods, wipes, ketone meter, glucagon, extra strips, scissors, batteries, and more. Everything has its place and stays put. Loooooove.

IMG_3001

Last but not least, this beauty, along with the PDM, Dexcom receiver, and a couple of gluten-free snacks, goes inside a small backpack, which we refer to as Diabetes Kit. It’s usually V’s responsibility to pack it and wear it. We don’t leave home without it. At least in theory. We may have accidentally left it behind once or twice or thirty million times.

IMG_3002

By the way, the front pocket is where we keep fast acting sugars, for quick and easy access.

And that’s a wrap! Or a zip-up 🙂

I had a blast writing these Diabetes Blog Week posts. Don’t forget to check other people’s posts here. 

Diabetes Blog Week: The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Healthcare: The Good…

We are very, very lucky. Our healthcare experience has been overwhelmingly good. We have a wonderful pediatrician who was instrumental in V  getting promptly and accurately diagnosed with T1D. Our children’s hospital is outstanding and we received excellent care, support and education when V was hospitalized at diagnosis. V’s Endocrinologist rocks our socks. She listens, does not rush through appointments, answers all our questions, and treats us as equal team members. The Endo clinic has two dedicated pump nurses who are very knowledgeable, experienced, efficient and kind. We have very good insurance through my husband and so far experienced minimal barriers or delays in getting the supplies V needs.

Healthcare: The Bad…

The lack of understanding of T1D by many health care professionals (HCPs) outside of diabetes specialists that we encountered is appalling. So many providers have no clue. Like this very nice nurse as CVS clinic, who treated V not long ago for an ear infection. She was trying to assess if V’s BG had been over 200 that day. I’m pretty sure she was just following the protocol. I tried to politely explain that 1. It’s an extremely lucky day if V’s BG does not go over 200 at some point, and it’s totally normal, and 2. When she’s sick, her BG will run high no matter how aggressively we try to treat it. She told us that if her BG does not come down in a few hours we will need to go to the ER. Umm…No. Seeing that I was not going to agree to this plan, she stood down a little: “If it’s still over 200 in 3 hrs, you will call your doctor, OK?” I said “sure” just to end the conversation, and can we please deal with V’s ear infection now, thankyouverymuch?

Healthcare: The Ugly…

The initial expense of diabetes – the hospital copay, ALL the insulin and supplies at once, a million appointments in the early days, and pump and CGM copays a few months down the road – was a royal bitchslap to our finances. The year of diagnosis we reached the out-of-pocked maximum for the first time ever. The cost of insulin and test strips is absurd, even with our very good insurance. Between all necessary supplies, labs and quarterly Endo appointments, we spend a lot of $ on diabetes every year. But once again, we are lucky and privileged. We have good jobs and good insurance coverage. We can manage. Other people are not so lucky.

How is it that some people have to ration insulin because they cannot afford it? Or not have access to life-saving CGM because Medicare and Medical do not cover it? Or have constant battles with insurance because of ridiculous denials, delays, and screw-ups? It breaks my heart to hear stories about people’s struggles with diabetes because they do not have access to affordable, quality healthcare. It infuriates me when insurance companies create barriers to care and access and make medical decisions based on cost vs. scientific evidence and doctors’ recommendations. Nothing gets my blood boiling more than seeing companies put profit over patients’ health, and sometimes over their lives.

Healthcare: My Wish List

Non-diabetes healthcare providers: Please educate yourselves about T1D and the difference between Type 1 and Type 2. Basic knowledge will suffice, really. When you know about signs and symptoms of T1D and DKA, you can save lives. And if you don’t know much about T1D, please don’t tell us what to do. We can sort it out with our diabetes management team. Also, you need to trust our knowledge and expertise. Chances are we know a lot more about T1D than you do.

Insulin-makers: Get a grip on the cost of insulin. Yes, we understand you need to make money and make your shareholders happy. But you are holding hostage people who cannot live without the medication you make. And your profits keep going up while insulin costs are going up and people’s out-of-pockets costs are going up. There can be a better balance. Curb your greed!

Insurance companies: Don’t try to pretend that you are in it for our health. We are not stupid. But just like drug-makers, there can be a better balance between your need for profit and our need for care and access. Do not make medical decisions or deny access to coverage because you don’t deem it medically necessary – it’s up to our doctors to decide!

Medicare and Medical: COVER CGM. It is not only medically necessary, it can be life-saving, especially for seniors and children who are particularly vulnerable to dangerous highs and lows.

In the long run, everyone benefits from being healthy.

bridge-to-good-health-2

Image used with permission from Laddie at testguessandgo.com

Diabetes Blog Week Wednesday: Language and Diabetes

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

There are so many words and phrases surrounding diabetes that can evoke a strong response. Where to even begin to describe some of mine?

Coincidentally, I weighed in on what I think about “diabetic” in one of last year’s Diabetes Blog Week Posts.  The short of it is, it’s OK, it does not bother me in the slightest.

I could talk about “compliance”. That’s one word that does not make me – and many others – feel warm and fuzzy, especially when it’s used by healthcare professionals to slap a negative judgment without making any efforts to understand why their patient is struggling.

But you know what word really gets a reaction out of me? Wait for it, wait for it…

DIABETES.

That’s right. I am totally serious. I have a very complicated relationship with that word.

There is a part of me that is simply sick and tired of hearing it. Diabetes, shmiabites… How often do I hear it every day? How often do I say it myself? Diabetes brings me no joy and saying/seeing/hearing it is no exception. When I don’t say it out-loud, I think it. Diabetesdiabetesdiabetesdiabetesdiabetes… Sometimes it’s just a slightly annoying white noise; other times it’s like a swarm of angry wasps. Can I please have a day without saying, hearing or seeing the word?

ip.bitcointalk.org

Often, when I hear the word “diabetes” uttered by a stranger, I recoil. What’s going to come next? A mean-spirited joke? A deluge of misinformation? A judgment? An unsolicited advice? It immediately puts me on a defense. Do I say something? Do I let it go?

Then there is a hassle aspect of it. You can’t just say “My daughter has diabetes” and leave it at that. It’s not like “she has hazel eyes”, or “she is 11 years old”.  Once the word “diabetes” comes out of my mouth, some version of an elevator speech must follow. There are times I don’t mind. And there are times I absolutely cannot stand it. I can feel anywhere from annoyed to exhausted, depending on what’s going on.

Yet, there are times when, upon hearing “diabetes”, my ears perk up and my heart skips a beat, in a good way. It usually happens when I’m with my T1D tribe, or when I meet a new diabetic/family, or when a person who’s addressing me clearly knows what they are talking about. When a stranger at Costco notices my daughter’s pump or CGM and asks if she has diabetes, it’s a good sign! The word becomes a symbol of connection, unity and understanding. Bring it on!

And then, when I am particularly mad at diabetes the thing, I call it “diabeetus”. No matter what is going on, calling diabetes “diabeetus” makes me chuckle. As soon as I can laugh at it, it’s a battle half-won.

fd54a6b92a36c5069f352abaa7791f20