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Type 1 Diabetes

Fingersticks for everyone!

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My Continous Glucose Monitor (CGM) transmitter has died. It was only meant to last a year or two and we have been together for three and a half years. Medtronic is working with my doctor and insurance to replace it. In the meantime, I’m back to fingersticks all day, like some sort of caveman.

No big deal, right? Wrong. I have become so dependent on my CGM that I truly don’t know how to comfortably live with diabetes without it.

I have diagnosed anxiety that is typically managed pretty well with medication and mindfulness. Until my CGM stopped working. I found myself feeling so panicked throughout the day. Was my blood sugar plummeting? Was it rising? Did I take enough insulin to cover lunch? Did I take too much? Continue reading

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Type 1 Diabetes

DKA

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My father was 68 years old when he passed a few days ago. He had Type One Diabetes for almost 60 years. Sixty years of urine test strips, insulin injections, fingerpricks. Sixty years of low blood sugars and high blood sugars.

This is a portion of his death certificate.

Three little letters that mean so much. D. K. A. And why was my father, a diabetic who for years had his A1C never higher than 5.8, in DKA? Because nursing homes and even hospitals don’t know anything about insulin dependent diabetes. His nursing home didn’t get his insulin from the hospital when he was transferred there. They had him wait a day to get it. A day. An entire 24 hours without insulin. And no one batted an eye. Not a doctor, not a nurse, not a medical assistant. No one.

This has to change. It has to change starting with educating the public, medical school, with each other. As diabetics we have a responsibility to explain our disease every chance we get. I owe it to my dad to try to make sure those  three little letters aren’t on another person’s death certificate.

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Family Type 1 Diabetes

Diabetes is Scary

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This photo is of me and my dad (yes, it was the 80s). My dad has had Type One diabetes my whole life.

My early memories of diabetes weren’t good, they were scary. My dad would have low blood sugars a lot and often need assistance. An ambulance had to come to our house more than once. I can remember my dad biting his tongue so bad during a low that there was blood all over his bed.

I used to have nightmares about getting diabetes. My dad used to always tell me there was a “one in a million” chance of me getting it. In 1988, I won the Diabetes Lottery.

Over the years, I have watched diabetes own my father. He had a brief stint working from home when he had passed out from a low, at a PGA tournament. The department of motor vehicles considered it to be a seizure and briefly suspended his driving license. He later decided to work from home full time. That fueled his “diabetes OCD”- the need to eat the same things at the same time every day. He planned any outing around his meals and his diabetes. He could not and would not go off schedule. Dinner was at 6:30pm every single night of my childhood.  Continue reading

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Rheumatoid Arthritis Type 1 Diabetes

It’s Not Pretty

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This is what I look like after:

  • Spending my commute screaming f*ck because the sciatic pain was at its worst
  • Trying to work all day with a fever
  • Being unable to get my blood sugar down because the pain is causing it to rise
  • Drinking a ridiculous amount of caffeine so I don’t fall asleep driving home later
  • Sitting on an ice pack all day because I can’t get my back to stop hurting
  • Getting ready to drive home with my sciatic nerve feeling like someone is stabbing me up and down my leg

Just living with Rheumatoid Arthritis and Type 1 Diabetes is hard enough but working full time and caring for a family is a battle a lot of patients, like me, fight every day.

I’d be disrespecting myself and my community if I only showed my “good” photos and didn’t share my struggles. So here I am. It isn’t pretty.

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Rheumatoid Arthritis Type 1 Diabetes

Perspective

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My first infusion was done in a small room with only two infusion chairs. Last week, was my second infusion of Simponi Aria and it was in the “main” infusion center. From what I could tell, most of the patients were fighting cancer.  

I thought to myself, “they are fighting a much harder battle than me, I’m just here for Rheumatoid Arthritis”. And then it hit me. Everyone’s battle, including mine, is important. Just because I’m injecting my small dose of chemotherapy at home and getting a biologic infusion, doesn’t mean that the infusion process is any less scary or intimidating for me. My disease will never be in remission. I have permanent damage to my joints and bones as a result of Rheumatoid Arthritis and no amount of chemotherapy is going to fix that. I could very likely be sitting in that infusion chair, every 8 weeks, for the rest of my life.

So I’m going to try to keep things in perspective. When I see someone cry or flinch while getting a flu shot, I’m going to try to remember that just because I have given myself shots for 28 years, not everyone else has. 

 

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Type 1 Diabetes

Diabetes Label

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It’s hard not to feel like you’re failing at some point when living with Type 1 Diabetes. Whether it’s a missed bolus, high or low blood sugar, or just public stigma, diabetes can make you feel unsuccessful.

I logged into my hospital’s patient portal today and happened to notice this at the top of my report, from my latest endocrinologist appointment. 


Well controlled. Well controlled? Me? I have a 7.1 A1c. Do a quick search on google and you’ll find plenty of people who only think something starting with a “5” is good. 

A level of 7.1 equates to about a 157 blood sugar average. And, in my opinion, that’s not horrible! Not only do I deal with Type 1 Diabetes but Rheumatoid Arthritis as well. Pain, stress, inflammation, and a flurry of medications all mess with my blood sugar. Not to mention trying to maintain an acceptable blood sugar just dealing with LIFE.

So, well controlled? I will gladly accept that diabetes label.

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Diabetes Blog Week Type 1 Diabetes

The Healthcare Experience

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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!


Having multiple chronic diseases does involve a lot of doctors appointments. There are some overall healthcare items I’d like to change:

  • Communication. Especially between providers. And, especially, before my visit. It would be great if my endocrinologist read my rheumatologist’s visit note before my appointment. She would see that maybe I was having a rough month and that prednisone was on the horizon.
  • Fluidity. If I ask my endocrinologist about my trouble sleeping, she gives me some ideas but ultimately says that that issue falls under my PCP. Totally understandable. But maybe she could take the extra step to send a message to my PCP, letting her know that I needed some help. Save me a doctor’s visit and a copay.
  • Timing. My diseases aren’t just being managed from 9 to 5, Monday through Friday. Recently, my insulin pump decided to stop working. At 11pm on a Thursday night. My endocrinologist and Medtronic were easy to get in touch with but my insurance company? Nope. My endocrinologist called in a Lantus Rx, to my 24hr pharmacy, but it was delayed because my insurance initially rejected the claim. It wasn’t resolved until the next morning. Just because I wasn’t in the ER, doesn’t make my need for insulin any less important.
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Diabetes Blog Week Rheumatoid Arthritis Type 1 Diabetes

Call me Diabetic but don’t call me Arthritic

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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? 

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I have had Type 1 diabetes for 28 years. I am a diabetic. I am also the child of a diabetic. I’m a mother, a daughter, a wife, a blogger, a worker, a neighbor, a knitter, an exerciser. I’m also a person with children, a person with a blog, a person who goes to the gym, etc. I am a lot of things. And all of those things define me. And that’s ok.

I use “diabetic” and “person with diabetes” interchangeably. I’ll tell a physician that I’ve had diabetes for years but in the next breath I might say to someone in the waiting room “oh this is my pump, I’m a diabetic”. I wouldn’t think twice.

Ready for a curve ball? I also have Rheumatoid Arthritis and I think I would be pissed if someone referred to me as arthritic. Just typing that word bothers me. Sure my joints are arthritic but I’m not. I can’t really put my finger on why arthritic bothers me so much yet diabetic doesn’t. I have come to terms with diabetes- I have it, I’ve had it for a long time, and I’ll always have it. Sure my blood sugars can be wonky but in a weird way, I’m used to that. But things are different with RA. RA is painful, it’s debilitating. I would take diabetes over RA in a heartbeat, I wouldn’t need to think about it.

So maybe that is my issue. I have diabetes but it doesn’t have me, so the terms and language don’t bother me at all. But most days, I feel like Rheumatoid Arthritis has me. It controls me. It decides if I’m going to cry in pain on the way to work or if the ice pack strapped to my leg will be enough. And maybe, I need to come to terms with that.

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Diabetes Blog Week Type 1 Diabetes

The Other Half of Diabetes

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We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

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Diabetes is draining. It never goes away, you can’t take a break- it’s kind of like having a toddler and trying to go to the bathroom for one second. They’re right outside the door, screaming your name. 

In addition to the carb counting, temp basals, infusion set changes, beeping pump alarms at all hours, and your pump falling out of your pants on a regular basis (that can’t just be me, right?), diabetes effects your mood. A simple dip or a climb in blood sugar, can set the tears flowing or make you want to grab a bottle of water out of a stranger’s hand. 

Diabetes is draining. So what can a girl do? Laugh. Today I told people at work that my pancreas needed a new AAA battery. I also said that eating a chocolate covered cricket was 100% not worth a bolus (and I stand by this, I will not be swayed, don’t bother trying). 

What else can you do? Share. Get on Twitter- I guarantee at any hour of the night, someone is tweeting about diabetes. Just knowing that at 2am, someone else is dealing with a blood sugar that just won’t behave, means the world. Someone gets you. They get your disease. I encourage every person with diabetes to get connected- don’t go at this alone. 

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Diabetes Blog Week Type 1 Diabetes

Message Monday

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It’s the first day of Diabetes Blog Week! Woohoo! If you didn’t sign up, it’s never too late!

Let’s kick off the week by talking about why we are, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

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I think sharing your story is the most important thing you can do as a patient. Why? Because each of us has a unique perspective on diabetes. There are still countless people- physicians, nurses, family members, friends still don’t understand diabetes or even know enough to help us. And even worse, there are countless incorrect myths floating out there.

My mission is simply, to put a face to diabetes. If one person wears their pump proudly, instead of hiding it, then I have accomplished my goal.

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