Today’s topic: 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!

Oh, Lord. What a doozy. Where do I begin?

It’s true. Having a chronic condition does make me intimately aware of the current faults of our healthcare system.

In the 80s, I was assigned to a pediatric endocrinologist who only made my mother cry during and after appointments. I was frequently in the hospital for trying to be a toddler on Regular and NPH insulins and refusing to eat. This was apparently all my mom’s fault. Not the technology available. Not the resources available. Clearly, my mom was a terrible person according to this endocrinologist.

So, we moved away from the HMO network we had of doctors and we started going to, probably, one of the best endocrinologists in the area at the time. Dr. Nancy Bohannon. My parents paid out of pocket for my appointments, which were about every 6 months or so. When Dr. Nancy wanted me to try a new insulin, we had to jump through a variety of hoops to fill the prescription in our HMO. I needed special clearance to start on Humalog and Lantus because my HMO didn’t regularly have it on their formulary list. Luckily, my regular pediatrician was semi-diabetes-savvy, so once we could contact her, we could get an in-network script written.

I turned 18 and moved out of pediatrics, finding myself with a brand new PCP. Someone who only knew me and my life based on the GIANT chart that accompanied my nurses. The topic was my most recent gamut of blood work results, which I completed shortly after having my wisdom teeth pulled. While my A1C was average for a college student, my micro-albumin test results were much higher than normal. Very different than my previous results.

The conversation with that doctor basically turned into a blame game. How I was wildly out of control and I have early signs of kidney failure. Wait, what? For better or worse, I’ve never had an A1C over 7.2%, so the “wildly out of control” thing struck me hard. I mean, I was in college. I liked the grilled cheese sandwiches in the dining hall, plus the occasional (illegal) wine cooler. But, clearly, my kidney function was suffering, so I was given a script for Licinopril, an ACE inhibitor to help protect my kidneys from further damage.

I never saw that PCP again. And I never really had a test result that high ever again. (I haven’t been on Licinopril in over 10 years.)

I decided I needed a new endocrinologist. I asked my new PCP for a referral. I was told I didn’t need one. Um, what? Yep – didn’t need a specialist. But, I needed to take a Statin in addition to my Licinopril because I am, at 20 years old, at a greater risk for a heart attack and all diabetics need to be on one.

We compromised. I took the Statin. He gave me a referral.

I fired that PCP after several mis-guided appointments and found someone who was all about handing out referrals. He was also like “why are you on all of these drugs you don’t obviously need?” Cool. Thank goodness someone on my side.

He left the practice. Fuck.

One more PCP later, I got a new job and left the HMO I had been with for 30+ years. I got to start from scratch with a new network of doctors I could pick. Maybe this is what I needed. Start over fresh. Finally have an HMO which will cover CGM technology because my previous would only do so if you were deemed “brittle.”

Nah. I have issues with script re-orders not being received. I have 3 different prescription and durable medical vendors all taking orders from one office in my HMO. Do I need CGM parts? Call so and so. Insulin? Order online here. Call Medtronic directly for pump parts. Didn’t get your order? Call this number or maybe this number. Or this number?

I currently see my new endocrinologist every three months, rather than annually at my old HMO. We don’t discuss much at my 20 minute long appointments, so I usually question why I go. But, I have “uncontrolled diabetes” marked on my chart, so therefore, I must need to see a doctor more often.

What are the common threads here? Blame. Guilt. Compromise. Inconvenience.

For a chronic illness that came about to no fault of my own and can  only *kind of* be controlled by artificial means, a lot of this sure seems like it all falls on me. Like, I will only get adequate care to survive if I scream for it. Or stop seeing a doctor. Or pay a butt load of money.

Why is this okay?

Today’s prompt: Our topic today is Language and Diabetes. 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.

Several years ago, I did some volunteer work for a non-profit benefiting children with developmental disabilities. They had a set standard for presenting the organization’s mission, approved vocabulary to use at their events, and so forth. For example, their beneficiaries were “children with autism” rather than “autistic children.” Describing the children as “handicapped” while at one of their events, or ever, was frowned upon. The purpose? To eliminate the stigmas and stereotypes. To say, hey, I have a disability but it doesn’t have me. Or define me. I learned a lot from working for that organization, and still try to keep the vocabulary and phrasing I was taught during conversations.

When it comes to my own illness, I waiver slightly. “Person with diabetes” is only a phrase I’ve recently began using – mostly influenced by the Blogsphere and social network. I refer to myself as a “diabetic” often enough that it doesn’t phase me if someone else says it. It’s not a slang term or a derogatory term at face value. Since I was diagnosed at a very young age and have no recollection of my life before diabetes, it does define who I am and it’s very much a part of my upbringing.

But…

There have been plenty of instances where “well-meaning” words regarding my condition are anything but.

For example:

“How can you be diabetic? You aren’t fat.”
“[thumps mid-arm] Hey, when you are done with that shot, can you give me a hit?”
“Oh, pregnancy in your condition sounds rough. Why don’t you just adopt?”
“You’re on an insulin pump? You must be a bad diabetic.”
“Well, it could be worse.”
“I couldn’t do it. I’m terrified of needles/blood/doctors/hospitals/big pharma.”
“Hey, have you tried [random supplement/cinnamon/camel milk] to get your A1C down? It worked great for me/my husband/my dog.”
“Why are you eating this/that/carbs/meat/fruit/ice cream? Don’t you want to take care of yourself?”
“This meme wasn’t about your diabetes. Stop being so sensitive.”
“Haha, look at this awesome dessert! #omnomnom #foodgram #diabetes”

I’ve heard or seen all of these. I realize people, usually, are just trying to help. Or make light of a not-great situation. While I don’t get hung up on someone calling me a “diabetic,” I do get hung up on these. I feel like there are ten zillion other responses or conversation starters or questions people can ask if they were really interested in what it’s like to be sans a pancreas.

Instead, ask me about what I have rather than what I don’t. Because the only way one can change the culture and perception of an illness is to educate and continue to talk about it. Keep talking about the things that make my illness unique and quirky, albeit frustrating and overwhelming.

I am casually participating in this year’s Diabetes Blog Week, hosted by Bitter-Sweet’s Karen Graffeo.

How does Diabetes Blog Week work?  The main idea for Diabetes Blog Week is that bloggers sign up to post about a set topic each day for a week.  This way, readers can jump around the DBlog Community and get a big variety of different perspectives on a single topic.  The hope is that new DOC connections are made, and that our voices are raised to spread a little more diabetes awareness.

I missed Monday’s prompt, so let’s move on to today’s:

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!)

Have you ever played Twister?

The marker spins. “Left foot, red!” “Right hand, blue!” Oh, shoot, now it’s “left foot, green!” Don’t fall. (But if you do, maybe you can take out your little cousin and make him lose too!)

Call me a Debbie Downer, but I didn’t find this game fun. I’ll admit, Twister stressed me out as a kid. For one, I was small and had short limbs in comparison to my cousins. So, I never won. I hated falling down. I didn’t like the fear of my hand getting stepped on. While some get a thrill of trying to bend in strange directions while balancing all of your body weight over a primary-spotted tarp, I didn’t want to try and think about looping my leg through everyone else just so I could land on Yellow.

Why am I bringing up my childhood board game trauma and what does this have to do with the mental side of having a chronic illness?

Having diabetes is a little bit like playing a really awful game of Twister. I start with a daunting board in front of me; there is probably a strategy I should follow to keep myself upright; but one false move and everything comes crashing down.

The strategy to tackle the day to day challenges seems easy per the instructions. Just give insulin with shots. Just eat better. Just exercise. (Left foot, blue!)

But now, the insulin dose was too much. Or too little. Just treat it. (Right hand, blue!)

Now that you have some balance, let’s complicate things. Your insulin brand of choice is no longer covered by your insurance. You do okay on multiple daily injections, but you really could use an insulin pump for better control, but can’t afford it. Or you suddenly lose your health coverage or it changes and the drugs that keep you alive now feel like a second mortgage payment. You are hospitalized for a complicated hypoglycemic reaction. (Left foot, green!)

It’s a lot to take in when you are down on the ground, trying to figure out how to move your foot to yellow when you can only physically be on green. And if you are still standing, the spinner spins again with another instruction to follow. Another command to follow to ensure survival, while hoping that your next move doesn’t capsize everything.

How does one cope with the mental pressure of a chronic illness, like type 1 diabetes? (And not have a phobia of Twister?) I spend equal parts of my life serving as an advocate and educator to those who wish to listen while trying to blend in with my non-D peers in an effort to remain “normal.” Technology is available to me to say “this is close enough” and I’m told I should be happy with that.

I’ve had several burn-outs with diabetes. Periods of time where the Twister round was over, but I didn’t feel like playing anymore. Or I was too busy with other aspects of life to focus on what made me fall in the first place.

There were a few solutions I found for those points of my life:

1. There was a book called “Diabetes Burnout,” which was recommended by one of my medical team members.
2. Find a new hobby. Possibly one that is active. Nothing forces you to fine tune your insulin regiments like physical exercise.
3. Talk about it with others. Blog. Join a support group. Do a walk-a-thon for JDRF.
4. Talk to a therapist. I am a huge fan of therapy and think more people should take advantage of this kind of self-care if it’s available. Living with a chronic illness is hard.
5. Let it take a back seat for a little while. I don’t mean stop giving your insulin all together or stop treating lows. But, if your status quo is safe and acceptable for a short period of time, roll with it for a bit.