Category Archives: Type 1 Diabetes

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

Here’s your gift bag!

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My husband had dental surgery today. In addition to post op instructions, he received a gift bag. Yes, you read that correctly. A gift bag. I’ve had quite a few surgeries and other than some ace bandages and a pain medication script, I usually just end up with a bill.

The gift bag had things he would immediately need- gauze packs, instant cold pack. It also had a pen, a t-shirt, and a coupon for a free milkshake from Chick-fil-A. Whaaaaaat?! I didn’t have to run out to the store immediately to get him gauze, we had it. And a milkshake? That’s the perfect post op treat- you haven’t eaten in hours but need to get something in your system (my husband has actually taken me to get a milkshake after every one of my surgeries so we had a little laugh about that at the doctor’s office). And what about the t shirt? Yeah, I’m wearing that now- it has a clever slogan about losing your wisdom teeth. Regardless, it’s clean and comfy.

How cool would it be if after my knee surgery, I received a gift bag? With maybe a stress ball to squeeze the crap out of (or bite into) when my nerve block wears off or perhaps a whistle for calling my children to help me? And maybe one of those long grabber things so I could reach my lip balm after I drop it on the floor and can’t bend to reach it?

In all seriousness, what would be in your gift bag? And have you ever been lucky enough to receive one yourself?

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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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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

Savor

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This morning I plugged a few numbers and answers into a form on JDRF.org and was presented with this:
Whoa. These numbers are estimates, they don’t include rollercoaster days and nights where I’m not sleeping and pricking my finger over and over.

They also don’t account for my life with Rheumatoid Arthritis. The injections, the blood tests, the pills, the infusions, and the time, not just sleep, that I’ve lost to pain.

They don’t account for the cost of medications and copays, the countless hours spent in doctor’s offices. And the time I spend worrying about my diseases now and what life will look like with them in future.

When I look at this, it reminds me that life is hard. Really hard. If you are in good health, savor it. Enjoy your sleep, your freedom. Appreciate your life, every minute of every day. Because, like my diagnoses of Type 1 Diabetes and Rheumatoid Arthritis, poor health can come out of nowhere.

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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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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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