World Health Day: “Beat Diabetes”

Today’s World Health Day and the World Health Organization chose diabetes as the focus. The campaign this year uses misleading and combative language in an effort to encourage people to take steps and present the onset of “diabetes.”

There is not enough of an effort to educate the world on what diabetes is and all of the types. Some cases of type 2 diabetes can be prevented, people living with prediabetes can delay or forgo a diagnosis of type 2 with appropriate lifestyle changes. (Test your risk here.)

But my type 1 diabetes? It wasn’t preventable and it’s not curable… yet. Mike said it really well in the DiabetesMine post today:

This is such a focus on prevention, but what about those of us already living with type 1 and 2? We can’t feel that we’re at war with our disease all the time, can we?

The marketer in me knows that these strong, fighting words are intended to have more of an impact and stir some emotion in people. However, as a person with diabetes, this terminology stresses me out. I hate living with diabetes. I don’t like feeling as though my body is working against me all the time. It’s even worse when the world is working against me all the time as well. It’s exhausting to constantly face ignorance.

“Did you used to be fat?”

“How come you didn’t grow out of diabetes?”

“You look like you take care of yourself, how can you have diabetes?”

“Do you have the bad kind of diabetes?”

“I don’t know the differences in the types.” (subtext: and I don’t care to learn.)

I recently had coffee with the new-ish executive director for ADA in the state of Ohio and we talked a lot about my experiences, misconceptions and access issues. One nice thing about our conversation had nothing to do with the words, but everything to do with her reaction to my pulling out my PDM to test my blood sugar. It was the most normal thing in the world to her. I don’t get that a lot… even around extended family.

I’ve said before that I don’t have a ton of offline connection to other people who live with diabetes,  but my online connections have been so valuable.

Diabetes isn’t an enemy to “beat,” “fight” or “defeat” every day. No one has the energy to wage a battle like that. Diabetes is a part of my life that I must manage, accept, deal with, care for and even respect. It’s a powerful disease that has the ability to damage me as well as kill me.

I think it’s more important to Beat the negativity and Spread some knowledge about diabetes. Here are ways to do that: Continue reading

Cutting Caffeine While Still Loving Coffee

I stumbled into a caffeine-free lifestyle about a month ago.

But I still love coffee.

Brad cut caffeine out of his diet more than a year ago and noticed a big difference in the way he feels. I followed suit accidentally when I got really sick. I felt like crap and my stomach was bothering me so I didn’t drink coffee, I had water and caffeine-free herbal tea. Before I knew it, a week had gone by and I hadn’t had a drop of caffeine. So why pick it back up? That’s how I got to where I am now, caffeine free.

I have no solid, scientific evidence for what the change did for me. But I can say that in the past I did take some smaller steps. For example, years ago to help my sleeping patterns, I stopped drinking anything caffeinated after noon. Then I limited myself to one cup of coffee a day (10 oz to be fair), occasionally having a second cup. I felt like it was easier to get to sleep at night that way.

Now that I haven’t had any, the waking up parts of my morning seem to be going well. I still love to have a warm beverage when I wake up, so a mug of herbal tea or cup of decaf coffee helps, but I don’t have to have it. I still like the taste of coffee so it’s not going anywhere any time soon.

Have you given up anything that you used to have on a daily basis like caffeine or pop?

Who Would I Be Without Diabetes?

I was reading Riva’s fascinating article on Diabetes Daily, partway into the article she asks,

“Who would you be without diabetes?”

I immediately stopped reading to think about my answer.

I’ve lived with diabetes a little more than 4 years. Many adults with type 1 diabetes were diagnosed in childhood and had type 1 as a companion growing up. My pancreas failed at age 22 giving me a vastly different perspective on who I am with diabetes in the equation and with diabetes out of the equation.

Although I’ve met some wonderful people through having diabetes and learned a lot about my own body and truly being healthy, I would not hold onto this awful disease if I could give it up. I wouldn’t hold onto bruise finger tips, devices attached to my body, risk of damaging my kidneys, eyes, nerves, etc, and the possibility of not waking up every morning, just because some part of me feels defined by having a non-functioning islet cells.

I’m a really healthy sick person. Having a chronic illness pushes me to take excellent care of myself, yet still I can’t get anything more than a standard life insurance policy because the numbers say I’m more likely to die young. I’d rather just be a really healthy person and drop the “sick” part all together.

I’ve worked very hard to not let my diabetes become my identity. I was Rachel for 22 years, then diabetes entered the picture, and I was (and am) still Rachel. I have a really crappy health condition and if I could give it up in a heartbeat, I absolutely would. Continue reading

Does diabetes interfere with your job or daily activities?

I do a health check in with my disease management program every several months and the most recent check in call came at a time when my Dexcom had died and my request for a new one was still under review with insurance, my Apidra prescription had been denied and a moron fill-in doctor wrote me a new prescription for Humalog without contacting me (and he called me “Mr.” in a message, clearly he didn’t read my chart) so when my doctor returned from vacation we started the circus of trying to get my Apidra covered by insurance that resulted in 3 attempts and fails to actually get the right paperwork to the right people and had me fearing that I’d run out of Apidra before I had a ruling. (Apidra arrived yesterday, now I’m trying to get the Humalog they sent me and overcharged me for returned.)

Anyway, one of the questions that my health coach asked was, “Does your diabetes interfere with your ability to do your job or other daily activities?”

My answer was “no” but I could have given her an earful. Continue reading

Healthcare in an Ideal World that For Some Reason Hasn’t Cured Diabetes

In an ideal world, diabetes wouldn’t exist. Neither would cancer or the myriad of other medical issues. In an ideal world, we wouldn’t need healthcare.

But in an ideal healthcare situation in a world that must include diabetes, here’s what I want:

Doctors who discuss care with their patients. I never again want to see a prescription for Humalog (when I take Apidra) sent to my retail pharmacy (when I use mail order) with an unfamiliar doctor’s name on it. Continue reading