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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.

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. 

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.

Family Type 1 Diabetes

You need insulin?

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My father has been in a rehab facility and was recently cleared to move into assisted living. When he arrived at the assisted living facility, he was told that they forgot to bring any diabetes supplies when they transferred him. Small problem. My father is a Type One diabetic and has been for over 60 years. He is managed on daily injections with multiple fingers sticks. They assured him they would have supplies by the next morning. Oh ok, the next morning! 

Thank goodness my father is able to speak for himself and insisted that at the very least he needed an insulin injection before dinner. What did they do? They shipped him off to the hospital. 

I have so many issues. One, my father is recovering and has an already compromised immune system so trips back and forth to the hospital should be avoided at all costs. Two, what the f? How in 2016 can health care staff, at any level, not know about diabetes? Well, they don’t and typically if they’re aware of diabetes, they only know about type 2 or just mash all of the types up into a convoluted mess.  

I feel incredibly helpless. It’s a situation where I want to take on the world. I want to educate every single person on this planet about diabetes. I want doctors, of any speciality, to all have basic knowledge of diabetes and appropriate treatment. From there, I want every nurse, every medical assistant, to understand. 

So I advocate. I share my story, my father’s story. I try to answer every question and clarify as many myths as I can. What can you do? Help me and the other 400 million diabetics worldwide. Take a minute to educate yourself and those around you. Share our stories. And please, ask questions. We love to talk about ourselves and our diabetes! 

Favorite Things Hope Type 1 Diabetes

Only Human and Type 1 Diabetes

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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!

 

Rheumatoid Arthritis Type 1 Diabetes

It Must Be

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Growing up with Type 1 Diabetes, I was always aware of how I felt and if those feelings were due to my diabetes. Did I feel dizzy? Thirsty? Tired? Confused? These could all be easily attributed to a low or high blood sugar. Once diagnosed with Rheumatoid Arthritis, I added more physical feelings that I could attribute to my disease. Pain, stiffness, muscle aches, popping, cracking, etc. I am constantly putting those feelings into a bucket- the diabetes bucket and the RA bucket. Occasionally there is the “normal human” bucket where a cold, for example, might fall but even the normal bucket spills over into the disease buckets.

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Being a parent to children who currently don’t have any major health issues when I do, can add a strong element of fear to my life. I question everything- “Didn’t he just go to the bathroom twenty minutes ago?” Must be diabetes. “Her knee keeps hurting, yet nothing happened to it.” Must be arthritis. “She keeps sleeping in on the weekend.” “His hands are really achy today.”

No, I don’t spend all of my time analyzing their every move or every sip of water they take. But these little thoughts pop into my head from time to time. Is there anything I can do to prevent one or both of them from developing an autoimmune disease? No. So why harp on it? Because I don’t want them to suffer. Of course I don’t want them to suffer having a disease, that’s obvious. But what I mean is that I don’t want them to suffer through waiting for a diagnosis. With Type 1, my parents were repeatedly told that I had a virus, to let it go. My father, a type 1 diabetic himself, eventually had enough and tested my blood sugar at home. I was immediately hospitalized. With Rheumatoid Arthritis, I spent months going to multiple doctors, telling them something was wrong, only to be told that I had tennis elbow and was favoring my joint. It took me not being able to walk anymore for someone to take me seriously and run a battery of tests. I don’t want my children, or anyone, to experience that fear, that unnecessary pain or stress on their body.

So if I can’t control who will get which disease, what can I do? I can advocate and educate. I can share my diagnosis stories, my disease symptoms, with anyone and everyone. I can share what I’ve been through and what I’ve learned with parents, doctors, friends, family, strangers. I can empower my own children to research their concerns and know that every question they have is important.

Rheumatoid Arthritis Type 1 Diabetes

Tidepool Love

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Last Saturday I had the privilege of going to my local JDRF TypeOneNation Research Summit. I learned valuable information and got some reminders I really needed (like bolus 15 minutes before eating, duh). Aside from wanting to share everything I had learned and ask everyone I knew to donate to JDRF, I walked away with an important action item for myself. Get set up with Tidepool. And that I did.

Quick background- I have a Minimed 530G with Enlite system. I also have the Minimed Connect which you can learn about here. I upload to Carelink via the Connect and I pretty much just glance at my screen, look over the past few hours, and try to make decisions on my diabetes. Sounds like a great plan, right? Uh, no.

Everything affects Type 1 Diabetes- food, stress, sleep, activity, hormones, etc. I’m fortunate enough to have Rheumatoid Arthritis to complicate things even further. My pain increases my blood sugar so much that I have a higher basal rate in the evening, for when my pain is at its highest.

Wouldn’t it be great to view my Continuous Glucose Monitor data and make little virtual notes on it, throughout the day to reference my pain, what I ate, when I exercised, when I felt stressed, etc.? Maybe it would look like this?

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So cool, right? It’s Tidepool’s software (with the best name ever) Blip and it’s corresponding app, Blip Notes. Setting up Tidepool is a breeze- they are one of those wonderful sites where your username and password work for everything- no need to create 5 different combos for one site. You download the uploader (haha) and off you go! Don’t worry if you don’t have Minimed products like me, it works for most of those other companies too.

Even without the Blip notes, the data is impressive and informative. It shows things like how many fingersticks you’ve done (I need to work on that too…), boluses entered, basal tweaking you’ve done, etc.

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For me, Blip notes is the icing on the cake. Free and easy to use. You create a new note, select one of your frequently used hashtags (at the top) or create a new one, add your note and done! Super easy, very quick..time and date are automatically added (you can change if needed).
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I’d love to hear your thoughts on Tidepool- have you tried it? If so, what’s your favorite thing about it?

Rheumatoid Arthritis Type 1 Diabetes

It’s a Good Thing

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Good Things About Having Rheumatoid Arthritis

  1. Due to almost always having a low grade fever, my cheeks have a natural flush that people pay money to obtain through cosmetics.
  2. My pharmacy knows me- we’re BFFs. I never have to spell my last name and they know I’ll be annoying if my prescriptions aren’t ready so I’d like to think I get faster service than everyone else.
  3. I can nap on demand. It’s a wonderful talent and yes, you should be jealous.

Good Things About Having Type One Diabetes

  1. Needles are afraid of ME
  2. Sometimes it’s medically necessary for me to eat the last brownie. Sorry I’m not sorry.
  3. I’m basically a robot.
  4. I can bring food or a drink to almost any concert or event just because I’m diabetic.
  5. I get felt up every time I fly. Every. Single. Time.

What would you add to this list? 

Rheumatoid Arthritis Type 1 Diabetes

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In hopes of finding something, that’s not in pill form, to help combat the pain and fatigue from my Rheumatoid Arthritis, I checked out a book. A bunch of books actually. I’ve been walking by the stack of them in my kitchen for the past few days, not really knowing where to start. I mean, obviously, I could do it the old fashioned way- pick up a book, open it, start reading the first page. But I don’t want to. I don’t want to waste my time, waste my hope to read a bunch of hocus pocus. 

Having Type 1 Diabetes has made me this way. I’ve had the disease for 27 years and if you aren’t familiar with it, in short, my pancreas doesn’t not work, will never work, and is just taking up space in my body. Over the years I’ve been told that cinnamon will cure me. I’ve been told that not eating gluten will cure me. Did I research any of these suggestions? NO! I have zero faith in the idea that adding cinnamon to my diet or sprinkling it directly on my pancreas, will cause my organ to come to life and allow me to throw my insulin pump into the wind. 

With that being said, I’m skeptical. Rheumatoid Arthritis isn’t as cut and dry as Type 1 Diabetes is. With diabetes, you take insulin..a fast acting one, a long acting one, or both. The insulin goes in and lowers your blood sugar. Sometimes it’s spot on, sometimes your blood sugars get wonky. But even then, guess what the solution is? Insulin. Yep, more insulin. There is no other option (at least for now). RA is different. There are a multitude of drugs and ways to take them: pill, injection, infusion. I could be diagnosed at the same time a someone else and we will each react completely different to the same medication. This is not a one size fits all disease.

So for now, I think I’ll let these books sit in my kitchen until they’re due back at the library. I’ll glance at their pages in the meantime and come across one like this:  

 

As someone who spends thousands of dollars on medications & doctors visits, I’m really not in the position to ensure that I’m showering with “toxin-free water”. And if my shower is really a “huge burden on my immune system,” why doesn’t my doctor or insurance company demand that I get filters? 

Rheumatoid Arthritis

Unpredictable

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After an evening of pain and irregular sleep, it was surprising to wake up this morning and actually feel ok. I didn’t have any major pain and was able to make breakfast for my family without feeling wiped out afterwards. I took my Meloxicam anyway. 

I ran errands with my daughter which I’m rarely able/willing to do because of either fatigue or pain. Nothing crazy- pharmacy, library, car wash, quick trip to the grocery store. I felt so great when I got home that I sat outside, listened to my audiobook, and enjoyed the Baltimore weather for a few minutes. I took a nap afterwards for about an hour, much shorter than usual! I dropped my son off to play basketball with some friends. Then I came back home. 

The minute I walked in the door, I knew it was coming. I sat my keys down on the counter and saw that my fingers were swollen. My hands started to ache terribly and both legs joined them. I felt like I had just gotten knocked down. 

What the hell? I didn’t do anything. I didn’t go run a marathon, didn’t clean the house, or even go to work. Why would pain come on so suddenly? 

I walked down to the basement to get the laundry, laid down on my husband’s weight bench, and cried. The pain was so strong and so frustrating. 

I always say that having Rheumatoid Arthritis is ten times worse than having Type 1 Diabetes. I don’t mean because of complications, life expectancy, medications, etc. Even though diabetes can is unpredictable, it at least gives you moments of consistency. You can at least assume that if you eat a Snickers bar, your blood sugar will go up (most of the time, ha!). Rheumatoid Arthritis has provided me with nothing even close to predictability. I have no idea what each day will bring. All I know is there will be pain at some point, in some capacity.