Wednesday, May 18, 2016

Dblog week: Language and diabetes

Click for the Language and Diabetes - Wednesday 5/18 Link List.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? Let's explore the power of words, but please remember to keep things respectful.
Today was a busy, busy day but a truly wonderful day, despite causing the alarm to go off at work when I got there before anyone else had arrived. Whoops! I spent most of the day at a PRSA Professional Development Day conference. My PRSA people are equivalent to my diabetes people. They create a happy, safe place for me. Today those worlds collided when one of my favorite #dsma friends came to town to attend the conference. YAY! It was great to spend the day with here even though most of the day was spent listening and learning rather than chatting and giggling. 

Since my day was so busy (and yes, I'm about to curl up and work from home while cheering the Thunder on to a victory), this blog won't be much but it will mean a lot to me. 

When I think of diabetes and language I don't think about if we should say "person with diabetes" versus "diabetic". I actually think of the power of words others have said to me about diabetes. I blogged about it shortly after it happened. 

I've shared it several times. I'm over it but I still think it is important to use as a lesson. A lesson of there are incredibly stupid, ignorant people in our society. A lesson of how if we believe we are advocates we should never stop trying to educate people about diabetes. A lesson we should never be ashamed or our diabetes. A lesson we should think of what we say. Prior to attending MasterLab in 2015 I felt there was a disconnect between people who have the various types of diabetes. I still believe that. Rather than uniting under the large umbrella of diabetes and fighting together to secure better care, we are not speaking with each other and fighting our own battles. The power we would have if we held our own unique "personalities" under the same umbrella would be world and life changing. 

With all of that said, here is what I wrote several years. When you read it think of the bigger picture of what you say and the impact it can have, even if those weren't your intentions. We become so irate when people make jokes about diabetes but how often do we joke about the battles other people have? 

From April 2014: 

Tuesday, May 17, 2016

Dblog Week: The other half of diabetes

Click for the The Other Half of Diabetes - Tuesday 5/17 Link List.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? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)
How does diabetes affect me (and my loved ones) mentally or emotionally? How does it not affect us all? There is a reason I firmly believe people with diabetes should spend time with mental health professionals. It isn't people with diabetes are crazy, it is the fact diabetes is a crazy game and can change at the drop of a hat. Anything and everything impacts it. It is a lot of handle. And comprehend. And still be a well-adjusted adult. 

A doctor once suggested I see a psychiatrist. I rolled my eyes but went. And  it helped. It became a type of "safe place." I was able to vent and yell and cry if needed. I was able to complain about how much it stunk having to count every single gram of carbohydrates. The bonus for me was this psychiatrist specialized in people with diabetes and other chronic illnesses. They may not completely understand my illness but they understand it and its nuances far better than most. 

Mental health isn't an option for everyone though. In fact, it currently isn't an option for me because the doctor's office hours do not jive with my work schedule and he is ├╝ber popular and it is extremely hard to get an appointment. You know what works just as well? Friends. Puppies. The diabetes online community (doc). I have met some incredible people through the DOC. Most only online but some in person. And just as I get them, they get me. I can shoot a quick note about the excitement of a device free shower and they get it. I can break down in tears from a horrific low blood sugar and they don't tell me to grow up. The best part is, I don't have to hide any aspect of my life from them because they get it. All of the components to my life as a person with diabetes can be overwhelming and exhausting and those without it can become tired and just want you to shut up if you go on and on and on. I have to be honest, usually I go on and on an on because I'm just sharing my normal life as others go on and on and on about their kids but also to continue to always attempt to educate others.

Those friends, whether they belong to the DOC or not, are crucial to survival. My puppy also helps me with the mental and emotional parts. Rocky isn't a puppy anymore -- he is eight years old but I still treat him as a puppy. And he is all about snuggling. He also seems to always know when I'm about to break from just being over all of this and refuses to leave my lap. Those few moments of curling up with him put me at peace and make everything seem perfect in the world. He is really the only living creature I release any tears to. He doesn't judge. He just loves me unconditionally. Everyone should have a Rocky in their life. 

Monday, May 16, 2016

Dblog Week -- Message Monday

Click for the Message Monday - Monday 5/16 Link List.
Lets kick off the week by talking about why we are here, 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?

Oh I am a slacker! I forgot to sign up and of course this week is chaotic with work, PRSA and everything else. I'm going to do my best to fully participate though. 

What is the most important diabetes awareness message to me? I think to me is it pushing the message I am a human first and i just happen to have diabetes. Maybe that is why I blog about all sorts of things such as Stitch Fix, cooking and random musings. (Yes, I'm fully aware my blog has been lacking since I started my new job this past September). 

If I wanted to be primarily known as a person with diabetes, I'd push diabetes 24/7. But I'm a human. With at least a million other facets to who I am than just my diabetes. As a kid, I always felt everyone viewed me as a person with diabetes first who happened to be someone's daughter, sister, student, classmate, teammate, etc. Even my endocrinologists seemed to view me as just another person with diabetes. 

Perhaps being viewed this way led to a lot of my rebellion and lack of ambition/motivation to actually care about myself and my health. I was defined as a youngster my the number of my glucose monitor. If I was high (because emotions, sunshine/heat or who knows why), I'd face the third degree about what candy I must have secretly eaten. Why bother trying if my numbers could be impacted by things I couldn't control. 

But then I found my previous doctor (she left the field so I have a new one who is just as amazing), who treated me like a human. She asked about my life. She bragged to others in the office when I bought my house, she bragged about me earning my APR. She gave me hugs. She cared about me and saw me as a human who happened to have this pesky disease rather than a diabetic who also happens to be a human with who knows how many interests. 

JDRF has started their "Type 1 diabetes looks like me" campaign and is shares a similar message as what I am unintentionally pushing out -- diabetes does not define me. I refuse to let it. If I let it define me, it wins. I'm competitive. I refuse to win. 

Just because I don't let it define me doesn't mean I don't care and I don't advocate for better situations for those of us with diabetes. I do care. I do my best to advocate but I don't want diabetes to be the first word people use to describe me. I much prefer mischievous or witty or adrenaline junkie or ambitious or heck, even "ethnicity unknown" (ha! inside joke!)

So, that is my message with my blog and social media. It isn't a common/traditional message and at times it seems others may view me not so favorably but I'm okay with this. I have no issue with those who let a disease define them but it isn't the path I choose for me. Which is wonderful. I truly love how everyone in the DOC is so different. 

Sunday, May 15, 2016

Changing technology -- CGM edition

I'm not the biggest fan of change and yet here we are, I'm making changes. This one is kind of big and yet it isn't. Since the fall, my endocrinologist has wanted me to consider switching my Continuous Glucose Monitor (CGM) system. And I kept pushing back about not wanting to change. And how loyal I am to Medtronic (Seriously. I love them). And how things were just fine as they were; there was no need to change. 

But when 2016 began, I encounter quite a few hurdles. My sensors consistently were failing. I had three weeks in a row of them failing. They always failed within 24 hours of putting them in on a Sunday. Of course they failed while I was at work which meant I wouldn't be able to insert a new one until the evening...after dinner. I'm not a fan of that. 

I also had several horrific low blood sugars which involved some blackouts, vomiting and who knows what else. Not ideal. I needed to evaluate and see what was not only causing them (still not sure) but why I wasn't catching them early enough to prevent the horrid of what they ultimately became. I've learned, unlike most others, I get pretty sleepy when I'm low and just want to "sleep the low off." Yep, I'm a winner. I also tend to sleep on my stomach. Where do I attach my pump while sleeping/laying down? on the waistband of my shorts/pants. So more often than not my pump, which is what beeps at me when high or low, is muffled between my body and the mattress and therefore I'm not hearing the alarms. Not ideal. 

With all of that, I agreed with my endocrinologist to do a trial run of the Dexcom CGM. Many are always saying how it is far more accurate than my Medtronic Enlite. Again, my loyalty to Medtronic wanted to prove that opinion wrong. So, I signed up for a trail run of the Dexcom and wore both at the same time. 

I put the Enlite on in the morning on Sunday and the Dex was put on towards the end of the work day on Monday. For the first two days or so, the Enlite readings were far more accurate. Then they both were pretty accurate and alternated on which was more accurate. Usually whichever was more accurate was only more accurate by a number or two. Say was 121 compared to 120 when my meter was 122 or 123. Nothing significant. 

Basically, those who rip Medtronic for not being accurate can shut it. 

Ultimately though, I have chosen to switch, at least for the time being. Reasons for me switching include:
  • Having an alarm to sound not coming from my pump so I will actually hear it and not ignore it and/or sleep through it;
  • The Dexcom app refreshes far quicker than the Medtronic one; 
  • I am able to eat while calibrating the Dex unlike my Enlite because no joke, more often than not, I went low while calibrating; and
  • It works with my Apple Watch so I'm able to discreetly check my numbers while at work. 
I am still in tears and feeling guilty about switching. If (we should be honest and say when, not if) Medtronic makes changes to their system, I will switch back. But at this point in my life, especially as a single person who lives alone (ugh, it hurt to type those words), I need a CGM I know I will hear because this horrific low blood sugars are too much and eventually could have a less than desirable result. I haven't found a way to tell my friends at Medtronic I've switched. I'm not grown enough to send them a message. I suppose they may read my blog (or perhaps they won't), but I know I'm taking the cowards way out by just posting a blog rather than sending them a message. And I'm sure for at least three months I will continue to feel guilty. I just need to remind myself I'm doing what is best for me and my health and care. And I subconsciously I know that is what they will care most about. But dang it, I feel guilty. 

And with publishing this post (a Sunday), I will be preparing to insert my first Dexcom sensor. My last Medtronic Enlite sensor finished Saturday evening. I'm feeling pretty bittersweet.