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Type 1 Diabetes

Hundreds of endo appointments

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I’ve had Type 1 Diabetes for 28 years. I see my endocrinologist about every 3 months, so I’ve had over a hundred appointments so far. And to be honest, today’s appointment was the first one I prepared for.

I know the drill- it used to be to bring in my logbook (which as a teen could have been completely made up at times) and get labs drawn, only to find out what my a1c was, a week later. Now it’s a finger stick in the office for an a1c result within minutes and surrendering my pump to a nurse so she can download pages and pages of data. It’s roughly the same thing, every time.

Today was different. Today I had a short list of items to discuss. When I pulled out my planner, my endocrinologist seemed excited to have a new challenge.

Item 1: A new pump and CGM

In a week, the warranty for my current pump and continuous glucose monitor expires. I’m currently on the MiniMed 530G. I was on a MiniMed pump for the first 8 years of my pumping career. I switched to an Omnipod and dexcom for a few years and then when back to MM when the 530G was released. Although the pod works great for a lot of people, for me, the tube pump provides more consistent insulin delivery. As much as I enjoyed the freedom of the pod, ultimately a tube pump is just better for me.

If you asked me a few months ago which pump I would switch to, I would have immediately said the MiniMed 670. The closed loop is exciting. When I took the time to think of what was important to me, I found that:

  • I want fresh, new technology that also looks current.
  • I want and need flexibility in my CGM site location. I have to use my MM CGM off label- I cannot get reliable results on my abdomen.
  • I want the option to view my CGM data where it’s convenient for me- my phone, a watch, on my pump.
  • I want my pump to be as discreet as possible. Not bulky.

For me this means exploring the T Slim from Tandem with Dexcom. This combo meets my needs better. The device is colorful and simple to update the software for. Dexcom sensors require much less taping than my current sensors, which means that when my Rheumatoid Arthritis is making it difficult for me to reach my back or behind my arm, I can more easily insert a sensor. Dexcom data can be viewed on the pump, on my phone, on a smart watch, and even sent to my husband.

Of course now I wait to see if my insurance is as excited to pay as I am to get started…

Item #2: Weight Loss

I go to the gym as often as my RA allows (usually at least 3 times a week). Like a lot of people with diabetes, I have fallen into the trap of eating roughly the same things as I know the carbs and how much insulin to take. But, unlike a lot of people with diabetes, I also have Rheumatoid Arthritis which can make diabetes Management a pain, literally.

Everything affects my blood sugar- pain, inflammation, lack of activity due to stiffness, nausea, etc. I’ve found that my insulin use has gone up as I often have pesky highs when I’m feeling awful and they aren’t easy to bring down. And with all of the extra insulin, my weight isn’t easy to bring down either.

I asked my endo about meds that would reduce my daily insulin intake which would in turn, help with weight loss.

First med we discussed was Afrezza. I have seen so many fellow diabetics using it with great results. But I quickly learned that those great results weren’t worth the risks for me. Since Afrezza is inhaled insulin, there’s concern for how this affects your lungs. Because Rheumatoid Arthritis caused me to develop asthma and with the risk of RA and lung damage, my endo and I quickly decided that this wasn’t worth the risk at all.

Next up was Invokanna. This drug causes you to basically urinate sugar instead of allowing your kidneys to reabsorb it (this article is a great resource for explaining these meds in better detail). This comes with a higher risk for infection, especially a UTI. Since I’m extremely infection prone (thanks again RA), I quickly eliminated this one as well.

Lastly, my endocrinologist mentioned Victoza. In short, Victoza is a daily injection that helps slow glucagon production, slow ingestion, and decrease appetite. Side effects? Nausea for the first few weeks. I can deal with doubling up my Zofran if I have to- much less scary than an added infection risk or potential lung problem.

So yay! we found a medication to try. But now, I get to wait again to see if my insurance will cover this off label use.

While I wait for my heath insurance to determine my fate, I’d really like to hear from you. What pump are you on and why do you love it? Have you tried adding any medication to your insulin only regimen. What happened if you did?

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Rheumatoid Arthritis Type 1 Diabetes

#SAVE32MIL

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The Obamacare Repeal Reconciliation Act is projected to cause 32 million Americans to lose health coverage by 2020. We need an adequate replacement, not a repeal.

This Friday, starting at 12am EST, use #SAVE32MIL on Twitter, to share your story and why healthcare is important to you. This is a non-partisan event- every American's life is important, and each person deserves quality healthcare.

Join us for a special hour Friday evening (8pm EST), where we'll discuss how to contact your legislators and what to say to them. Be prepared to share your successes and tips in advocacy!

All of this leads up to Monday, July 24th, when you'll be fully prepared to contact your legislators and encourage them to replace not repeal.

Click here to join the Facebook event and be sure to invite as many people as possible!

We are powerful as individuals, but our voices together can really make an impact. Join the conversation on Twitter, using #SAVE32MIL, as often as you can on July 21st.

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Favorite Things

PillDrill is a must for patients!

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“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” 

 

When I was offered the chance to have a PillDrill system sent to me to review, I had high hopes. Like many of you with a chronic illness or two, I take a lot of medications. Some are morning only, some have to be taken at night, and others are taken weekly or throughout the day as needed. I found myself jotting pain medications or antibiotics on post-it notes around the house. I tried to remember the last time I took a pain med by seeing if I happened to tweet about my pain earlier. There were days I’d start feeling strange at work and didn’t realize until I got home that night, that I hadn’t taken my morning medications.

In short, my system wasn’t working. All of that time and energy I spent trying to remember my prescriptions and jot down how I was feeling that day (to share at future doctor’s appointments) could have been spent on much better things.

Enter the PillDrill.

Continue reading

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Knitting Rheumatoid Arthritis Type 1 Diabetes

Self Care

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This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

When I was diagnosed with Rheumatoid Arthritis, I couldn’t stop asking “why?”. Why did this happen to me? What did I do to cause this disease? What could I have done to prevent it? The truth is, there isn’t a reason. I know that. But four years ago, I needed something tangible to tie my diagnosis to. The year right before my diagnosis, I was busy. Busy with a husband and two young children. Busy working full time in a job that required me to work early in the morning and late into the night. It required weekends and events that had me on my feet for almost 24 hours. In between meetings I would rush home to say goodbye to my daughter as she was getting on the school bus or quickly help with homework. I was exhausted but I never stopped.

I look back on the few months leading to my diagnosis and realize my body was trying, trying so hard, to tell me to slow down. I didn’t listen. Eventually, my body just stopped. I literally could not walk. It took another serious diagnosis (I already have Type 1 Diabetes) to realize that I needed to take care of myself. And that’s where self care comes in.

When I first saw the term self care, I thought it had to be a certain something. It had to be an appointment and it had to cost time and money. Like a spa day. Sure it can be a day getting pampered but that doesn’t fit into my life or budget. Continue reading

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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? 

keep-calm-i-am-a-diabetic

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?

Haidee-Merritt-January-Cartoon

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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Rheumatoid Arthritis Type 1 Diabetes

Where do you sit?

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I read an interesting article this morning by Dr. Jack Cush on RheumNow and I’m wondering, where do you naturally choose to sit in an exam room?

Dr. Cush’s unofficial statistics show that 55% of patients sit in the chair furthest from the doctor, 25% on the exam table, and the other 20% in the chair next to the doctor’s desk/computer (see his diagram below):

seating

My rheumatologist, endocrinologist, and PCP are all part of the same hospital system. My rheumy and endo have offices set up almost exactly as the image above. I always sit in the chair next to the desk. In fact, it never occurred to me to sit in the chair furthest away, sometimes I use that chair to hold my things. My PCP’s office on the other hand is different. They use a COW (Computer on Wheels) and it is almost always placed right next to the exam table. In all my years of going to my PCP’s office, I don’t think I’ve ever utilized a chair in the room.

I find this interesting because my visits with my rheumatologist and my endocrinologist, are more conversation driven. There is less exam and more discussion. In my PCP’s office, there is more of an even amount of conversation (explaining symptoms) and examination. Therefore, in my mind, sitting on the exam table makes sense.

If you are one of those that sit in the chair furthest from the doctor, think about why you do it. Is it a new physician that you are unsure of? Are you truly comfortable with your doctor? Do you feel at ease asking questions of your doctor? And most importantly, are you playing active role in making decisions about your disease?

Please read Dr. Cush’s article and let me know your thoughts in the comments below!

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Favorite Things Hope Type 1 Diabetes

Only Human and Type 1 Diabetes

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human

I am a regular podcast listener. In fact, I love my podcasts and one of my favorites is Only Human. Today’s episode, The Robot Vacuum Ate My Pancreas, is worth every second of 33 minutes. Today’s topic is Type 1 Diabetes and features Dana Lewis (you can visit her on twitter here) and her artificial pancreas system.

There were two specific moments during this podcast that I felt the need to share this podcast with everyone I know. Hearing other Type 1 Diabetics, especially children and their parents, talk about how much their life has changed by using an artificial pancreas, brought me to tears. I cannot fathom being a parent of a child with Type 1 Diabetes- managing my own disease is difficult enough. Hearing a child’s little voice and then the voice of their parent, I could almost feel their relief coming through my car speakers.

My absolute favorite part of this show was when Kenny Malone compared keeping a car at exactly 70mph while driving, to keeping your blood sugar at the perfect number, was amazing. I have struggled for years with getting others to truly grasp the time and attention this disease demands from me. I think this explanation is going to help me tremendously in getting my disease a bit more understood.

Please take a listen (or read the transcript) and let me know your thoughts!

 

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