Insurance Change

Has an email about changing insurance ever made you cry?

If so–you might have a chronic disease.

My employer is changing insurance providers and I’m scared out of my whits. For most people, a change in insurance companies doesn’t mean a whole lot. You will probably still go to the same urgent care clinic for strep throat tests, and you’re probably fine calling whatever toll free nurse-line number that’s printed on the back of your insurance card. You might have to see a different primary care physician each year for your pap/physical, but the only doctor who would have ever recognized you in a crowd was probably the pediatrician you had until you moved out of your parent’s house.

The insurance company is the gatekeeper to our care. They approve or deny every aspect of what keeps us alive. Typically it means a change in the ‘provider network.’ Most insurance companies make deals with certain providers for two reasons; it keeps the insurer’s costs to a  minimum and it provides some assurance that patients will consistently obtain care from those providers.

I’m thankful to be employed. I am thankful to have insurance in the first place, but I am scared that my current endocrinology team will not be within the new insurer’s provider network. This means paying some percentage for every visit out-of-pocket. It’s commonly between 20-40%. That’s a lot when I am supposed to see them 4 times a year with each visit costin between  $300.00 and $500.00.

All I can do is hope that all of my OmniPod supplies are covered and that my team is within the provider network.
Even if not–I’ll keep fighting the good fight.

Uptown

Friday was World Diabetes Day.
Saturday I met a guy in uptown who told me I probably wouldn’t have Type 1 Diabetes if I had committed to clean eating. He conceded that I probably can’t cure my diabetes now that I caused myself to get it, but could easily get off of insulin. He also is sure that most people with autism wouldn’t have it if their parents committed to clean eating.

He knows a lot about this stuff because he works out at Lifetime Fitness, got his teaching credentials but only taught for 7 months, and now works at Target Corporate. He also told me that he believes that I will die a conservative. I got pretty excited to exchange contact information so I can let him know my political leanings on my death bed.

He made it clear he didn’t want to ‘push’ his ideologies on me, because he could tell I was a really smart girl. Listening to him talk for 2 hours was just ‘hearing him out.’

At ten minutes, fifteen minutes, and every five minutes thereafter, I explained to him it was Saturday night and it was the time and place to have a fun time. I assured him that when I am dying, which is going be sooner than later if I don’t commit to clean eating, I would shoot him a text as long as I still had the feeling in my fingers.

As the night came to a close, and the snow fluttered down softly from the sky, I was thankful that my whole life could be changed by one guy, in one bar, on one night in November.

Invisible

I, inadvertently, invented a game with the one student at school who also has Type 1. While walking in the hallway a week ago, we crossed paths, and I simply said “105.” This number had been my most recent blood sugar reading. The kid smiled and said “nice!”

The next time I saw him, I said “161.” This time, he responded, “Aw man, 265!”  So the game began. Other students who witness our exchanges always look confused, as though we’re speaking in code. I suppose, we are, in a way. They ask him what our numbers mean, but he just smiles and says, “figure it out.”

And so we’ll keep playing each day in the hallways, but we won’t keep score. I’m not sure we can keep score, with all of the variables that affect a blood sugar–bolus rates, basal rates, carb counting, glycemic index of the food we eat, illness, amount of sleep (or lack thereof), stress, exercise, even the temperature of your office.

The game isn’t about keeping score. It’s not even about who has the number closest to 100. It’s about remembering that we’re connected through a shared reality, a shared patience. A game that helps us, or at least helps me, feel a little less invisible in my experience with a chronic illness.

Ice Cream & Sandwiches

My blood sugars have been terrible the last 3 months. Highs and lows, peaks and valleys. It could be a number of things, but it’s probably a lot of things combined. Here is the list:

  1. Basal rates not right
  2. Crossfit
  3. Inaccurate carb counting
  4. Change in schedule
  5. Stress

Last night I teared up about it and decided to take a hot shower to help me calm down. After the shower, in the process of putting on my shirt, my pod ripped off my arm. At that point I just broke down. I put my face in my bath towel and cried. But it didn’t really help anything. I still ended up going low two times in the night even after I lowered my night time basal rates significantly.

Today I’m flying to Chicago with my sister. The TSA swabbed my hands and pod for explosives. They did not find any. I had to laugh.

Triumph and Concern

It has been two months and four days since I started the OmniPod. My a1c in March of this year was 9.4 while on injections. With a lot of hard work, it went down to 7.9 at the end of summer. With even more hard work and adjusting, I got it down to 7.5. A couple days before I started the pump, the doctors did a last a1c. It was 7.4.

I had an uneasy feeling that 7.4 was the lowest it was ever going to be. 7.4 sounded pretty good, and I was proud of myself, but I had to micromanage to get there. I was testing every two waking hours.

6:30am. 8:30am. 10:30am. 12:30pm. 2:30pm. 4:30pm. 6:30pm. 8:30pm.
and in the middle of the night. 1:30am.

I don’t know if I could have kept it up any longer. Even though the a1c was looking a few tenths of a point better, I was a slave to the numbers. It was like going on a super restrictive diet–I was going to cave and binge at some point. Why not take a whole couple months off? I can always get it back down to 7.4, right?

For non-diabetic readers (there are probably two of you) an a1c is one way doctors can measure the sugar control and overall health of a diabetic. It’s a magical number. Check out this chart.

The first column is the a1c. The second column is the average blood sugar the way American meters read out. The third column is for how pretty much every other country in the world reads out. On injections, my last a1c was 7.4. That means my average blood sugar over the past three months was 186.

The results of my most current a1c came in today. It was 7.1.
I spun around four or five times in my office chair when I read it. I feel pretty dang good about it. 7.1! Dr. K is still working out my night time basal rate. So I know I can get down into the 6.0s.

I was so excited that I called my mom. And then I called my dad. My dad was a big proponent of me getting the pump. He is a gadget guy and loves all things technology. He did a lot of encouraging (and nagging) for me to buy the pump. I finally did it, and things are going well except…

My dad is pre-diabetic. Type 2. His a1c isn’t that far off from mine. That scares me.

He never pesters me to keep up on testing, but he does give me gentle reminders any time we get on the subject. He wants to keep me around. Well, I want to keep him around, too. So I wrote him a letter.

Dear Dad,

Five years ago I drove myself to the doctor’s office and they told me I had diabetes. I didn’t have to ask them if they could cure it, because I knew they couldn’t. I could give myself insulin for the rest of my life. That’s what I could do. 

You left work and came to take me to the hospital. I think you found me curled-up on the floor of the office. We walked slowly to the van. I felt like I was dying. I kind of was, because I had ketoacidosis. But you stayed calm. You took care of me until mom could make it to the hospital, and then you both took care of me.

And I made it. They put me on an insulin drip, and I started feeling better right away. You even brought me a new MacBook on the last day of my hospital stay. I lived and I got a new computer. Not bad.

But now its my turn to worry. I’m trying to stay calm, but soon it will be you. You’ll go into the doctor’s office and they’ll tell you you have diabetes. Your story can be different. You will have a kind that you can reverse. You could stop it from happening all together, but right now you’re not…Why not?

What do I do, Dad? I want to keep you around as long as I can. I don’t want to see you lose any fingers or toes. I want your heart to keep beating, so it can keep loving me, and so I can keep learning about how big another person’s heart can be. 

You’re the most compassionate person I know. It’s so hard to be patient, but I’ve learned so much patience from you. Please, papa. Be patient with yourself and your health, and don’t give up on it. I will help you and support you, just like you did for me when I was sick. We can stop you from getting sick all together.

I love you, Dad.

– Andrea

Lyme

Last night I watched Under Our Skin, a documentary about the controversy surrounding chronic lyme disease. People who have it are living with chronic pain and neurological symptoms caused by a latent spirochete infection. The problem is that the greater medical community doesn’t recognize chronic lyme disease as existing. At all. So there are thousands of people who exhibit symptoms consistent with some sort of chronic disease, who may or may not have tested positive for the lyme spirochete, and who are being denied care or are being treated inefficiently/inadequately because some dudes wrote a paper saying that there isn’t evidence that lyme disease can be chronic. The problem with those dudes is that they have a bunch of conflicts of interest (see the bottom of the article linked above). Several medical doctors who have treated patients with chronic lyme disease using intravenous, long term antibiotics have been summoned by state agencies (and testified against by those same dudes) and had their medical licenses taken away. Yikes.

I thought about all this before I ended up falling asleep. I’m thankful that my disease is rather simple to diagnose, and that there probably aren’t any (legitimate medical) doctors who deny its existence. Now, there’s a heck of a lot of controversy surrounding the cause of diabetes (witches?!?!), and the best ways to treat it (prayer alone obviously)…but no doc is going to look at a blood sugar of 745 and say there isn’t anything wrong.

Last night I was playing the “why me?” game, but now I’ve moved into the “at least I don’t have…” mindset. Both are questions people pose themselves when they’re grieving…but more about grieving a diabetes diagnosis later. Right now I’m going to be thankful that my last blood sugar was 101 and that I still have the feeling in my hands and feet.