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Rheumatoid Arthritis Type 1 Diabetes

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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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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? 

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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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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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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.

what-are-the-symptoms-of-ebola-because-i-am-pretty-sure-i-have-some-of-them-like-this-itchy-index-finger-f72f0

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.

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