Diabetes Isn’t “One Size Fits All”

I love the diabetes online community for everything that it offers: advice in times of need, hope in times of despair, helpful anecdotes and inspiring stories, and friendships formed across time zones and many miles.

One of the things that the diabetes online community sometimes does, though, is to try and prescribe how everyone with diabetes should live. One day, it’s the Dr. Bernstein diet, the next, it’s high-carb, low-fat. The Mastering Diabetes (mostly) fruit diet is so popular now that their book has even made the NYTimes Bestsellers list. People are jumping on diet and exercise bandwagons before they figure out what they truly need (and want!) in terms of their diabetes management, and what it should look like, day-to-day.

Parents are often left feeling guilty if they can’t “hack” their child’s insulin pump, and individuals with diabetes feel bad when they don’t (or can’t?) do CrossFit or maintain a super low-carb lifestyle. A once seemingly supportive community now raises an eyebrow if they spot you eyeing over a cookie during a meet-up group, or (god forbid) a sugar-sweetened beverage. But I’m here to say one thing: diabetes isn’t a “one size fits all” disease.

You are not a “bad diabetic” if you don’t have a DIY looping system, or if you don’t want to sit down and try to figure it out. You’re fine just the way you are if MDI or insulin pens work better for you, if you dislike skin adhesives, or feel claustrophobic always having something attached to you.

It’s okay if you spike every morning, without fail, due to dawn phenomenon, and if you don’t ever post your CGM graphs to social media. It’s okay if you don’t have a CGM (really, it’s fine). Or if you don’t take an SGLT2-inhibitor off-label. Or even want to try. There’s no perfect low snack. There’s no perfect meal.

Figure out what your body needs, and honor that. It’s okay if you don’t want to eat low-carb, high-carb, or in-between. Or if you’ve lived with type 1 for 15 years, enjoy your weekly ice cream treat, and don’t want to give it up. Figure out what you need and want, and do that. 

It’s okay if you don’t own a Myabetic bag, or can’t afford one, or think they’re ugly. It’s alright if you’ve never been to diabetes camp or don’t want to go. It’s alright if you don’t want to jump all into advocacy and chant, and rally, and cheer. It’s okay if self-care for you is sitting in a quiet room, and coming to a place of acceptance.

It’s okay if you don’t join any Facebook diabetes support groups, or seek out diabuddies in real life. It’s okay if diabetes is only a very small part of your life. It’s okay if it’s your whole life.

It’s okay if you don’t like going to the endocrinologist, or have to force yourself to see your eye doctor. It’s okay if you don’t like talking about your diabetes with others. Diabetes is not one size fits all.

It’s okay if sometimes you’re feeling overwhelmed, over-stimulated, and need to turn inwards, for yourself and rest sometimes.

There is no perfect way to (micro)manage, eat, exercise, handle stress, socialize (or not!), dose, count, or bolus. There is only the way that will work for you and your body. Find what works for you, and embrace that. 

Have you ever been pressured to manage your diabetes a certain way? Eat a certain diet? Exercise in a specific way? How did you deal with the pressure? Share this post and comment below; we would love to hear your stories!

Source: diabetesdaily.com

If Your Blood Sugar Could Talk

The diabetes online community (DOC) is great for finding information, asking for advice but also for a much-needed laugh. Over the past few weeks, Levi Davenport’s video that humanizes his blood sugar has gone viral within our community and many are finding this two-part video series not only hilarious but therapeutic as well.

I caught up with Levi to ask him a few questions about his own type 1 diabetes (T1D), the way he copes and his intentions of this well thought out video. Please make sure to watch the two-part video at the end!

When were you diagnosed? How did you handle the diagnosis?

I was diagnosed with type 1 when I was 15 years old, in 2004. I was playing high school baseball, and looking forward to getting my driver’s license. The last thing I was interested in dealing with was diabetes.

Photo credit: Levi Davenport

Did you have a good support system from family, friends, and doctors?

Absolutely, I was surrounded by fantastic people – family, friends, and Vanderbilt Children’s Hospital. I had no family history. I caught a very bad stomach bug (think – very bad). Afterwards, over the next 10 days, I lost 14 lbs. and had what I later came to know were the symptoms of high blood glucose. A doctor visit later, I was told I was the proud new owner of a dead pancreas. That was it. I had a two-week hospital stay and then my parents drove me back and forth to Vanderbilt to go through the T1D ‘crash course.’ None of us knew anything about type 1 and to date, I am the only diabetic in our family.

Being a kid is hard enough. Did you feel different and isolated due to your new normal?

Internally yes, and angry. Externally no, but only because I chose to hide it from everyone — friends, teammates, girlfriends, teachers. I only told people about it when I absolutely had to. I did not handle the adjustment well.

Did your diagnosis affect any of your life decisions (what you wanted to be when you grew up, going away to college, etc.)? 

Not at all. I don’t let T1D stand between me and something I have my mind set on doing. You are only limited in life by what you are willing to do.

Did anything in your life have to change in order for you to optimally manage this disease?

Oh yes, I had several dark years. I lost an incredible amount of weight. I am 6’5 and went from fit to emaciated in a matter of 2 years. I dropped from 240 lbs to 186 lbs. The catalyst for me was my children. I was in bed one night and felt my shins and thighs tingling. I realized that it was the beginning of neuropathy. I gave thought to how many years I was shaving off my life by ignoring my health, and within 2 months I had an insulin pump, continuous glucose monitor (CGM), and a watch that showed my blood glucose.

Photo credit: Levi Davenport

Did you turn to your family and friends for support?

Not really, I am a pretty private person when it comes to feelings and emotions (working on that).  After years of shutting everyone down, I could definitely see that they were happy to see what was happening though. Especially my wife. Living with a 24-hour grump took great patience. Since starting on the pump/CGM I have regained the 50 lbs and I felt so much better that I no longer cared about who knew I was a T1D.

Once I found the DOC, the face of this disease changed for me. Not only the information I got from others living with type 1 but I made real friendships that helped me feel less alone. Did you go online for support and information? Have you made any online connections that have helped lessen the burden of this disease?

I turned to the DOC when I started learning about resources like Spike and Xdrip. Shortly after, I discovered the social media groups and pages. I couldn’t believe it. If you aren’t a member of a T1D page or group, you need to check them out. There is a wealth of knowledge to be had, as well as encouragement and community. Seeing all of the people participating, commenting, sharing experiences and advice was very motivating. It also was when I realized I needed to find a way to contribute to the cause.

You clearly have a great sense of humor, do you find humor to be therapeutic?

I definitely find it therapeutic. It is a great pressure relief valve. I spend most of my day focused, serious, and perhaps not smiling enough. People in my professional life were somewhat shocked to see me be silly in that video.

Speaking of humor, what do you think of all the diabetes jokes out there?

If it is funny, I can laugh at it. Diabetes wins if you let it get in your head.

Your video has gone viral within the DOC. Did you expect such a positive reaction from our community?

I’m completely blown away. My channel ‘Between Two Lines’ is very new. I remember talking to my wife about making a funny video and being very nervous. Wondering if anyone would even think it was funny? Would anyone relate to it? You are really putting yourself out there to be ridiculed when trying to take something serious and use humor to encourage and inform. The T1D community is awesome. I’m glad people enjoyed the video and will certainly be making more of them.

What do you think makes it so relatable? What is one of your favorite moments? I know I laughed the whole time and have had the same thoughts and feelings as “Mr. Blood Sugar.”

I’m not sure I even know. Perhaps it is that many others feel the same way I do. Diabetes is stupid. I hate it. I hate everything about it. I wouldn’t wish it upon my worst enemy. But you know what? It isn’t going anywhere and I’m not going to let it steal the happiness from my life. So, I tried to find some humor in it.

My favorite moment was when “Blood Sugar” pulled his hoodie tight over his head to ignore me joking about muscles. Reminded me of my sister and how she responds to my younger brother and me bragging about fitness and working out.

What made you think of the idea in the first place?

There are a million funny videos out there that we all watch every day. I just thought I would take a stab at making one about being diabetic. It was important to me though for it to be funny, but not making fun of the fact that I had diabetes.

At the end of the day, what was your main objective of this video and what would you like people to take away from it?

The main objective of the video was actually to inform. Humor is a great tool for educating. I wanted people with diabetes to laugh, relate, and feel relief that they aren’t the only ones dealing with that garbage. I wanted non-diabetics to be able to watch the video and laugh – but learn about some of the things their diabetic friends, family, or coworkers deal with.

Thanks again for giving us all a laugh. I was away and having a tough time with my blood sugar and laughter was certainly the best medicine!

Part 1:

Part 2:

Source: diabetesdaily.com

How People Invalidated My Feelings Towards My Diabetes

By Madelyn Corwin

I haven’t felt this way about my diabetes before this year. When I was diagnosed, it was a “do or die” attitude. No time to cry. No time to make my classmates pity me.

My teachers rarely believed me when I said I needed to get a snack for a low of 40. I believed them when they’d tell me, “I’ve had diabetic students in the past, but it’s never been like this. None of them have needed to leave the classroom this much.” I believed them.

I thought I was being dramatic. I thought I was doing something wrong. And that I was annoying. So from those points on, I hid it. Injections in the bathroom and skipping the nurse’s office before lunch. Sometimes I wouldn’t even inject for lunch because I’d be walking with my friend to the lunchroom, and I didn’t want to cut off our conversation because I had to inject myself. I’d skip completely. Because I was always told, “It’s not a big deal,” “You’re fine,” “It’s not deadly.” I didn’t want to be different. And I feared the comments of “Oh, you have to go do that?” because I thought people would think I was weak for injecting myself.

Photo credit: Madelyn Corwin

That’s how bad it got. I’d sit in the class after lunch period, and my vision would be so f***ing blurry, I couldn’t see the board or even focus. And then the teacher would, of course, get mad at me because I couldn’t answer a question they’d randomly called on me for. I’d play soccer with blood glucose levels up in the 350s and think it was fine. I’d get yelled at for “not running to the ball quickly enough.” I didn’t wanna say “because I’m f***ing dying coach!” I didn’t want to be viewed as weak.

I wish I had this community (Diabetes Online Community) when I was in high school and my early college years but I didn’t. I take myself so much more seriously now. I got my first A1c below 7.4% since I’ve joined this community. I’ve gotten rid of my microalbumin. My vision doesn’t blur as bad as it used to during highs. I eat healthier. I always give insulin. I always correct highs. I always change my site. I always check my sugar. I don’t think I would be able to do all that without meeting everyone I met online. Because I was conditioned to believe I was fine. That nothing was wrong. That I was normal. But that was the furthest thing from the truth.

 

I was made to feel for 8 years of having type 1 diabetes that my disease wasn’t serious and that if I complained about it, the typical reply was “at least you don’t have cancer.” I am so glad I found thousands of other type 1s online, especially those who’ve lived with this since they were kids as well that I can relate to. I used to have thoughts in my head like, “This s**t is so f***ing hard. Why am I always being told it’s not a big deal by perfectly healthy people?” or “I can’t believe I’ve had to do this since I was a kid and I have to do this for the rest of my life and everyone’s first response is, ‘At least, it’s not cancer.’”

I stayed quiet for seven years. I didn’t share with my online friends what was wrong with me because I was conditioned to believe it “wasn’t a big deal.” I thought if I told people what was wrong with me, they wouldn’t care, or they’d just say the typical “well, it’s manageable!” comments. I even hid the struggles from people I dated, which caused me to not take good care of myself because I wouldn’t correct if I was high because I didn’t want them to think I’m being dramatic or “too serious” about diabetes.

Photo credit: Madelyn Corwin

Photo credit: Madelyn Corwin

I’m so glad I found all of you. It helps me feel more validated for all the hard work I put in every hour of the day just to see the next. I feel my hard work to keep my body alive is finally recognized through the people I met online. I don’t think I was ever validated like this before. I was told I was “normal” and “can do anything” but I’m so glad I met some of you all to tell me that we aren’t normal, and we do need to have boundaries, and that’s OK. Thank you.

Source: diabetesdaily.com

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