My Take on Diabetes and Support

It’s November 20th which means that it’s Day 20 of the Happy Diabetic Challenge! Today’s prompt is “biggest supporter”. Since it’s impossible for me to identify a single person as the biggest source of support with my diabetes, I decided to write about how my thoughts on diabetes and support have changed over the years.

Emotional support is a lovely thing. It feels good to have people in your life who you feel have your back. And it’s twice as nice to have when you’re dealing with a chronic illness like diabetes.

I talk extensively about diabetes and support in the most recent episode of the podcast, Ask Me About My Type 1. (Here’s the link in case you haven’t listened to it yet.) Rather than rehash everything I said in that episode, I’m going to use this post as an opportunity to reflect how my wants and needs in terms of support for my diabetes have changed over the years.

It’s interesting (at least, it is to me) to think about how and why my desire for support has changed as I’ve grown older. My childhood was very normal despite diabetes. It was always there and it was always a thing I had to deal with, but I definitely didn’t feel compelled to talk about it as much as I do now, let alone lean on others in difficult times. Why is that?

I think it has a lot to do with getting to know myself better as I’ve aged.

HUGGING THE CACTUS - A T1D BLOG
In this post, I get all self-reflective-y on diabetes and support.

After all, they say that with age comes wisdom. And though I don’t exactly consider myself a wise old sage or anything of the sort, I do think that I’ve acquired some enlightenment about myself and the way that I process things in my adulthood.

Specifically, I realized in the last few years that diabetes has instilled in me a strong desire to feel in control of every aspect of my life…not just diabetes. When something doesn’t go according to whatever carefully thought-out plan I’ve cooked up, I get upset. And I tend to either bottle up my dismay, which is never a good thing to do, or I totally take it out on the whichever poor soul happens to be within my vicinity, which isn’t fair. Neither of those reactions is a healthy method of dealing with things, but at least I’m aware of that and I’m actively trying to improve how I cope.

I think that this example shows how important diabetes support has become to me because I’m able to lean on others in those times that all of my diabetes plans don’t work out the way I envisioned them. I’ve figured out, over time, that it’s just about the only thing that really works for me. Talking to other people with diabetes (and without diabetes) about struggles that I’ve faced makes me feel less alone. It used to be scary for me to be so vulnerable with others, but I’ve found that it’s worth it because it helps me heal, move on, and forgive/accept myself for feeling whatever I’m feeling.

Support from others is truly powerful…but above that, learning to rely on others – learning how to best support myself, really – is more than that. It’s magical and absolutely enhances the quality of my life with diabetes.

Thank You

Today’s blog post is intended to be short, but sweet: I want to take this as an opportunity to say thank you.

To my sweetie,

 

Since I published my post last Friday about being “dia-feated”, a dozen or so members of the DOC – and even a couple nonmembers – have reached out to me via social media to share their words of encouragement with me:

“…I enjoy your blog posts and your voice is important to me”

“…your blog reached one person, and that’s enough (for me)”

“I read your blog all the time, and it helps me.”

Each message expressed similar sentiments using different words: Don’t give up. My voice matters to someone.

Again, the intention of that post was never to drive traffic to my blog or messages to my inbox. I was merely trying to express some sentiments that I’d been feeling for a few weeks now. But the fact that so many people DID, in fact, take the time to reach out to me and exchange a few messages with me meant the world. I found each one to be uplifting and truly touching, and if you were one of the individuals who wrote to me, I can’t thank you enough.

It’s funny – but truly wonderful – how kind words from friends and strangers alike can do so much to revitalize your soul and make you see what’s right in front of you: an amazing, supportive community who just gets it.

Thank you.

What Every Parent of a T1D Child Needs to Know

I may not be the parent of a T1D child, but I am the T1D child of my parents. So I have a unique perspective on the concerns and fears that a parent of a T1D child might have.

I also have a little more insight on these concerns and fears through my interactions with many parents of T1D children over the years. These parents had children of all ages: from toddler to teenager. Their children ranged from newly diagnosed with diabetes to multi-year veteran of T1D. Despite these differences in ages and years with diabetes, they’ve all had something major in common: An intense fear over the day when their child would make the transition from living under their roof to living independently, on a college campus or in another living situation.

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The mere thought of their beloved son or daughter going through this was enough to make some of these parents on the verge of tears. It was heartbreaking, but also somewhat confusing to me. I understand the unconditional love that parents have for their children, so naturally, they were terrified at the thought of their children feeling alone as they made the transition to young adulthood, or frightened by the prospect of their children suddenly not wanting to take care of their diabetes anymore. But what I didn’t get was why they automatically assumed the worst.

What if their child thrived in this transition? What if their child found a wonderful group of people, such as the College Diabetes Network, that helped them through this period in life (like I did)? What if their child was ready to manage everything on his or her own? Certainly, it would be a source of pride for a parent to witness his or her child do well and embrace independence.

On the flip side, if a young adult with T1D struggled to make the transition smooth…well, I told many of these parents that it’s okay. Because I struggled. A lot, actually. But I made it through. The longer I spent away from home, the more I realized that it was time for me to hold myself accountable in terms of diabetes management. There was never really any big “aha” moment for me. It was more of a slow-and-steady recognition of the fact that the shitty blood sugars I was constantly dealing with could only be changed by me, and me alone. So I took the steps I needed to; naturally, with the support of my parents.

I guess that’s kind of the two-fold message I’m trying to convey here to worried parents of T1D children: 1) Have faith in your child’s ability to adapt to change, and 2) Never underestimate how your support, in any form, can mean the world to your child. Don’t be afraid to have conversations with him/her so you can get on the same page and understand how you’re both feeling about this new life stage. That way, you can find out exactly what kind of support you can offer to your child that he/she will find most helpful.

The bottom line: Parents with T1D children, it’ll be okay. Just like people with diabetes know they’re not alone in their struggle against it, you should also know that there are many other parents out there who probably feel the same as you.

In that way, we’re never truly alone when dealing with new challenges or changes in our lives. Once that’s realized, it becomes a million times easier to figure out the best way to tackle them with your support system by your side.

Dad Appreciation Post

This post originally appeared on Hugging the Cactus on June 18, 2018. I wanted to republish it today because my dad (and all fathers of T1D children) should be recognized for everything they do for us. I also wanted to give my dad a little extra shout-out, as this is the first Father’s Day that I’m not there to celebrate him in-person.

Father’s Day was yesterday, but as I did the day after Mother’s Day, I want to use today’s blog as an opportunity to express my appreciation for dads: Namely, my own father.

Besides being the family patriarch, my dad is a firefighter/EMT. He makes his family feel safe with his emergency preparedness knowledge and skills. He also deals with his diabetic wife and daughter on an almost-daily basis, which warrants, at the very least, a ginormous golden trophy with his name engraved on it in fancy script.

Hey, Handsome
I’m so grateful for my amazing dad!

That’s because he sees the ugly side of diabetes from time to time. The side that causes blood to spurt out of mom’s abdomen when she removes a pod that struck a vein. The side that causes me to lash out, because my blood sugar won’t seem to come down from a sticky high, no matter what I do. The side that causes mom and I to lose sleep, because we’re treating another middle-of-the-night low blood sugar. The side that forces mom and I to be prepared for any and every possible diabetes scenario that could occur while traveling. The side that causes us to cry, because we just can’t deal with diabetes today.

And he’s there through it all.

He’s there to apply pressure and gauze to the bloody site. He’s there, feeling just as upset as I am, because he just wants my blood sugar levels to come back down, too. He’s there to make sure mom and I have enough glucose tablets or juice to bring our levels back up. He’s there, keeping us calm as we pack for our next trip and taking care of all the travel arrangements. He’s there to comfort us when we need him to, and he hates that we live with diabetes – probably even more than we do.

He’s the kind of guy who says he’d trade his pancreas with us in a heartbeat if it meant we wouldn’t have to live with diabetes anymore.

He’s the kind of guy I’m proud to call my dad.

Thanks, Dad, for helping me handle my diabetes over the years, and supporting every venture (diabetes and otherwise) that I pursue.

5 Things That I Don’t Mind About Having Diabetes

I thought about how I should title this blog post many, many times. It didn’t feel right to say “5 Things I Like About Having Diabetes” or “5 Things That Make Diabetes Okay”…because I will never like having diabetes, and I will never be okay with it.

But that being said, after living with it for 21 years, there are some “perks” to it that have made it somewhat more bearable. Okay, a LOT more bearable. Besides insulin, diabetes technology, and the like, there are five things that I came up with that make diabetes suck less for me.

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First, and most obviously…diabetes has brought wonderful friendships into my life. I’ve written about these friendships many times before and I’m sure I’ll continue to do so in the future, because they’re invaluable to me. I have some regrets about not realizing the importance of peer support when it comes to diabetes when I was younger, but maybe I figured it out in adulthood because some part of me knew that was when I would need it the most.

Second, diabetes has made me stronger. I won’t downplay the fact that it increases my anxiety and stress levels…but I also can’t deny that the trials and tribulations of life with type 1 diabetes has made me a tougher person.

Third, diabetes has forced me to be an obsessive planner. I do wish that I could live a bit more spontaneously sometimes, but honestly, I’m pretty proud of my ability to think ahead and plan well in advance of things. These planning skills have translated to other aspects of my life, too – I wasn’t on the party planning committee at work just for the heck of it!

Fourth, diabetes has taught me so much about nutrition. I’ve been reading nutrition labels before I could read actual books. I’ve met with nutritionists at various points in my life to learn how to eat a balanced, healthy diet that consists of the right amount of carbohydrates for me. I’ve educated myself on the power of the glycemic index and how it impacts blood sugar. Without diabetes, I’m not so certain that I’d have such a clear understanding of how different foods affect my entire body. I’m grateful to know so much about nutrition, because I think it makes me a healthier person, overall.

And fifth, diabetes has lead me to several interesting (and in some cases, compensated) research opportunities. Yes, you’ve read that correctly – my diabetes has allowed me to be a research study participant in a handful of studies and I’ve gotten paid for my involvement. The amounts have varied over the years – anything from a $5 Amazon gift card to a $200 stipend – but it’s not just getting paid that makes research participation worth it to me. It’s also knowing that I could be making a difference to the larger diabetes community. For instance, offering detailed feedback on a diabetes device or product might help make it better in the future, and if that means I spend an hour on the phone answering questions, then of course I’ll do it.

In times of diabetes hardship, it’s important for me to remember these five things. Diabetes was a shit card in life that I was dealt, but it’s not the worst thing that could happen to me. Reminding myself of these bright spots help to make life with diabetes a little bit better.

Why Online Communities Aren’t Always the Best Source of T1D Support

Before I jump into this post, let me make this unequivocally clear: The DOC (Diabetes Online Community) has been an incredible source of support, advice, and education to me ever since I discovered it (roughly seven or eight years ago). This post isn’t necessarily about the DOC; rather, it was inspired by a recent experience I had with a totally different online community. But what I’m about to say here can be applied to just about any kind of virtual support group in existence…

In addition to the DOC, I consider myself a member of a few other online communities. One of them is focused on fitness. (I’m not going to specifically name the group here, mainly because I’d like to maintain its privacy as well as the privacy of its members.)

Anyways, said group was formed to provide members with a place to post about their respective fitness journeys. Members are encouraged to post daily about their workout routines, nutrition plans, and any emotions that might arise as they work toward building a healthy lifestyle. It’s common for members to interact with one another and show support when someone is struggling, as well as applaud victories big and small as they’re met. Unsurprisingly, negativity and criticism aren’t welcome in this group, as it can be detrimental to the goals that each member has for himself/herself.

Thanks for the love!

In keeping with the spirit of the group, I posted a photo a few weeks back of myself (making a grumpy face) after a particularly challenging cardio workout session. In the caption, I wrote: “Excuse my pissed off expression…I had to cut cardio fix short because my blood sugar was getting too low. Only worked out for about 20 minutes this morning. I really wanted the full one cuz I treated myself with food just a tad too much yesterday…but I don’t totally regret it because it reminded me that I just don’t feel good when I snack unnecessarily. I’m always struggling to remember to only eat when I’m hungry or if my blood sugar is low, not because I’m bored or emotional. I know one day I’ll fully accept this and practice it!”

I wasn’t seeking sympathy or anything, I was just being honest with the other members of the group and channeling a bit of my frustration. Regardless, a few people did comment on the post with some reassuring words, like “you’ve got this”, “thank you for sharing”, and “one day at a time”, which I appreciated.

But what I did not appreciate was the comment thread that followed and involved myself and two other group members (my thoughts as I initially responded to this chain are denoted by asterisks):

Group Member #1: Oh no, be careful! Do u usually run low?
Me *Not wanting to dive into a long explanation*: I’m pretty well controlled for the most part, but exercise can make me go low sometimes! 
Group Member #1: do u have diabetes?
Me: yes, type 1 diabetes for 21 years now
Group Member #1: oh wow! Be careful!! Do u carry glucose tabs with you?
Me *Rolling my eyes as I respond, and adding a “haha” to keep it light*: of course! Haha I’ve had T1D for a very long time so managing it is second nature.
Group Member #1: okay good! Just making sure. Sorry, this was the pharmacist in me asking (an annoyingly cute monkey-with-hands-over-eyes emojis PLUS smiley face emoji followed this comment)
Group Member #2: The nurse in me wondered the same. 🙂
Group Member #1, responding to Group Member #2: haha! (followed by a stupid heart emoji)

What exactly is my issue with this thread? It starts with the “be careful”. It was probably an innocuous comment on the poster’s end, but I thought that me telling her that I’ve had diabetes for 21 years might signal that I know a thing or two when it comes to managing it. It also mildly irked me that she was qualifying her comments to me by saying that she was a pharmacist. That’s great and all, but that doesn’t make her an expert by any stretch of the imagination on diabetes…same thing to the girl who also chimed in by saying she was a nurse.

Now, you might be thinking that I’m overreacting to this whole thing – and part of me agrees, I’m sure that both girls just had pure intentions and wanted to offer support in their own ways – but if that’s the case, then this is a perfect example of how things can get misconstrued in an online setting. My interpretation of this thread is that both girls were trying to tell me that their expertise in their respective fields meant that they knew a good bit about diabetes, and rather than come off as supportive, the comments felt like show-offish (like, oh, look at me and how much I know!) and as if they thought I couldn’t take proper care of myself. Again, my interpretation may or may not be true, but it’s fact that we all need to be careful when choosing our words in situations like this. Even better, when something isn’t totally clear, we can choose to say nothing rather than chime in with a comment that might come off wrong or sounds misguided.

With that in mind, I now get why some people say that online support just isn’t for them. Personally, though I appreciate and like being part of online communities, this experience did teach me a lesson about being careful with my interactions in these spaces, and that I should always try to remember…it’s impossible to gauge tone/emotion in the comments section, and coming across as a know-it-all isn’t a good look on anyone.

The Cactus Corner

It seems like everywhere I go these days, there’s a cactus. (Or more often than not, cacti.) They appear in practically every form: I’ve spotted t-shirts, erasers, mugs, earrings, pool floats, and even stringed lights bearing the barbed plant’s likeness. The popularity spike of the cactus collided, by total coincidence, with the debut of my blog.

I’ve rapidly amassed a small collection of cactus items in the past year and a half, with no signs of slowing down. It’s certainly made it easier to represent my brand at all times, without even really trying. And it’s caused my family and friends to associate cacti with me – it always makes me smile when someone spots a cactus in their travels and lets me know that it made them think of me.

But even better, the cactus has spurned creativity in some of my friends who have been especially supportive of my blog and its mission since its incarnation.

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I have some incredibly talented friends.

Hence, The Cactus Corner – a little stretch of shelf space devoted to some of the cacti creations that my friends have made for me in honor of my life with diabetes as documented through this blog. There’s a cheerful, polka-dot-potted cactus that my friend hand-stitched in one section, and a painting of a blooming cactus set against a lovely pink background. Also pictured is a painfully cute pin that I’ve attached to my meter case – a portable cactus that I carry everywhere with me, along with all my diabetes supplies, as a reminder of my blog and of the diabetes obstacles I’ve overcome over the years.

The Cactus Corner is small and humble, but it represents so much to me. It is tangible evidence of the friendships I’ve been blessed with in life. It’s also symbolic of how I’ve chosen to embrace diabetes – pricks and all – for what it is.

So as my Cactus Corner continues to grow and thrive, I will, too.