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Posts from the ‘Diabetes Complications’ Category

Guest Post: Can Neither Confirm Nor Deny.

There’s power to the “me, too!” moments for sure, but there’s vulnerability involved in raising your hand first to say, “Me.”  Today, I have a guest post from a writer who wished to stay anonymous but who is looking for others who may have experienced something similar to what they went through.  If you’ve ever passed out or had a seizure, or have experienced a pocket of time where you know something diabetes-related happened but you can’t quite explain it, please leave a comment for this writer.  They need community now, more than ever.

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The day was just like any other. Except it was a Friday before vacation where the afternoon is extra stressful to complete everything before heading out and not looking back for one week. That morning the Dexcom sensor was incredibly itchy, so I removed it.

When the work day was done I left with a bunch of errands to run before I could really enjoy myself. At the first stop I couldn’t find my wallet in my bag even though I knew it was in there. I was disoriented and didn’t know why. I kept apologizing.  I was so embarrassed about my lack of functionality that I returned to my car with nothing completed for my errand.

An hour later I “woke up” confused as to where my phone could possibly be. I found it in the trunk of my car. There is no memory of what happened after I sat down in my car (parked). However, as soon as I woke up I knew I had passed out. Presumably from a low blood sugar based on my actions during my errand. Based on the location of my phone, I believe it is possible I seized as well. I have no way to confirm or deny this assumption.

I do not know if this will ever happen again. I do not know how I came-to on my own. I do not know why I am lucky enough to have survived this. I do know that I reached out to my support system. I reached out to the people who would take it as is and not freak out. I was doing enough of that on my own. I do know that it is a hard event to move on from. I also know I’m not willing to let the whole world know yet.

But! Has anyone had this happen to them? Or something similar? How did you continue to live your whole life with diabetes without this always being in the back of your mind? Or front and center? Did you over treat? Or start treating almost lows, which weren’t lows but actually acceptable blood sugars? How do you keep your focus on your sugars and not raise your perception of what’s an “acceptable blood sugar”?

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I’m glad you’re okay, Anonymous.

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

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Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

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:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.


Entering the Mancave.

There are issues we talk about openly in the diabetes community – tips on how to wear a pump, resources for good diet and nutrition, exercise goals, frustrations with blood sugar control, research, and on and on.  All of these topics matter because they play a role in diabetes management, and life as a whole.  But some of these topics are easier than others.  It can be easy to say, “I suck at counting carbs and I need help!” but it’s another discussion entirely to give voice to, “I’m dealing with reproductive issues and I need support.”

Those personal issues need discussing as much as the topics like counting carbs.  Complications are delicate.  Fertility is delicate.  Sexual issues are delicate.  Depression is delicate.  These topics are raw and riddled with social stigma, but they need unpacking.  Otherwise, they get heavier, already heavy all their own.

I remember when I first read about a woman who had given birth after decades with type 1 diabetes and it soothed a panic in me that was there for years, that idea that motherhood was beyond my grasp.  It was a moment, a good moment, that helped change the course of how I approached becoming a mother.

But I also remember the first time I found stories from people in their 20s and 30s who were dealing with diabetes-related complications.  This moment was good in a completely different way.  My diagnosis of macular edema in 2013 generated more than just a new medical condition to manage, but stirred up all these feelings of failure, guilt, and blame … a deluge I wasn’t really prepared for.  These emotions aimed to drown me.  I wanted to hide.  I had very dark, very uncomfortable thoughts that took me away, in a sense, from my friends and family.  I needed support, and am grateful that I found it.  Conversations with peers about dealing with complications at a point when I still felt young but realized how many decades of diabetes I’d logged helped me get through the initial diagnosis and kept me on the path of taking care of myself in order to preserve and protect, but also to continue living despite this new diagnosis.

“Me, too!” stories can help do that.  They confirm that you aren’t alone in what you’re dealing with and that there is support and camaraderie available even in the darkest of times.

I wanted to share a new website called The Diabetes Mancave, created by a writer who has decided to remain anonymous but not to remain silent, and his website is hosting discussions about the topics of male infertility, retrograde ejaculation, and erectile dysfunction, among other things.  From the site:

“You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

… In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.”

Discussions and blogs (and Twitter profiles) like his are long overdue.  I’m really sorry you’re dealing with these issues, Diabetes Mancave guy, but I am so, so grateful you are putting them out there.  I hope you find community and support because by putting your story out there, you’re potentially providing a life preserver for someone else.  Thank you for being brave, and encouraging others to be brave, too.

Does Not Compute.

“Do you guys have any fun plans for the summer?”

The question was simple enough, but not even close to a level my hypoglycemia-addled brain could handle.  I had trouble formulating a response, and the lag time was embarrassing.  We’ve only moved to the neighborhood a few months ago and haven’t solidified relationships with our neighbors yet, so being wickedly low in front of someone new wasn’t my favorite way to disclose my diabetes.

Thankfully, a disclosure had already happened, to a certain extent.  When she had asked me about my work travel this past week and what I did for work, I said that I worked in patient advocacy and that I’d had diabetes since I was a kid.  She nodded in recognition and shared that her college roommate was also T1D, so my disclosure was pleasantly subtle and streamlined.  No big deal.  What I hadn’t anticipated was going low during the course of our conversation.

And I was low.  Wickedly low.  The kind of low that made my face feel like it was full of Novocaine and that my hands were like birds at my sides, twitching and flapping absently.

I scanned the trees in the front yard for some kind of hint.

“Pssssst.  You guys!  You, trees!  Do I have fun plans for the summer?  HELP!”

They only waved their leaves at me.  “We have no idea!  Go get something to eat, dummy!”

“We go to Maine.  MAINE.”  I said it twice with way too much emphasis on the second one, an angry seal barking out their summer plans.  My neighbor didn’t seem to notice that my eyes weren’t able to focus on her, and I’m fairly certain she didn’t hear my Dexcom receiver hollering at me from the front steps of the house.  But I knew that another minute or two was the chasm between attempted conversation and calling for medical help, so I had to embrace the awkward.

“I’m so sorry; I know I mentioned that I have diabetes and you said your college roommate also had diabetes.  So I’m really, really low at the moment and I need to go inside to grab some juice.  Would you excuse me for a minute?”  I was trying to be polite and not let on that my thoughts were knocking around in my head like socks in a dryer.  She nodded and I took off for the kitchen, where I downed a glass of grape juice as quickly as I could.  My CGM only told me I was “LOW” and I cursed myself for not responding faster to the beeping.

Coming back outside, we stepped back into conversation without much pause, watching our kids play in the front yard.

“Sorry about that,” I said.  “No problem at all,” she warmly responded, not missing a beat.

And I kept an eye on my CGM graph, watching my blood sugars rise and kindly deposit thoughts back into my head.

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

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This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

Potent Potion.

Turns out I’m not unique in experiencing the dreaded “Dexcom rash.”  (Which sucks for anyone else who gets the major sensor scratchies, but at the same time, the diabetes community is innovative as eff.  We work around the workarounds.)

When it comes to dealing with my own Dexcom rash, wearing the Toughpad underneath my sensor helps a ton, but it doesn’t remove the reaction entirely.  Which means that after a seven days, I will peel off a sensor to find a raised, slightly irritated area underneath.  (And that patch of skin usually gets worse the next day, particularly after showering or if I’m in recycled air like in an airplane.)

After talking about the rash with my endocrinologist, I asked her for some recommendations for lotions to use after the fact, when I need to soothe my skin post-sensor removal.  She said that Amlactin was something that she’s used in the winter when hand-washing causes rotten skin, and suggested I give it a go.

So I did.

Magical rash healing powers.

A photo posted by Kerri Sparling (@sixuntilme) on

And it works better than I had expected.  It’s not the best smelling stuff (kind of like a stick of butter mixed with stale toothpaste and a dash of freezer burn), and it sometimes makes my skin feel hot for a few seconds after application, but if I slather this stuff on my sensor-irritated skin, it helps so much.  Rashes that took a week to properly mend were fine after two days, and the rapid-healing helped keep the curb appeal of my skin real estate intact.

There you go.  A post about a lotion that helps deal with Dexcom rashes.  No, it’s not sponsored.  Yes, it’s kind of boring.  But this shit works for me.  And it might work for you.  So go forth and slather.

Here’s a flying cat, just in case you wanted one:

Looking Back: Complications.

As I head up to the Joslin Clinic today to have my eyeballs, and my soul, looked at to make sure both are fine, I was reminded of this video from last year about diabetes-related complications.  I still stand by the sentiment that you owe it to yourself to live the best life possible, even with whatever you’ve got.

Hopefully today goes well. Either way, I’m on it.


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