I know I’ve shared the story before but when I was diagnosed with type 1 diabetes during my last year of college, my friends were the ones responsible for getting me to the hospital and saving my life. The rest of the story is that they also jumped in to try to help me manage all aspect of my new life.
We planned meals together. They offered to give me my insulin injections. But the first thing we tried to do together was get a little exercise.
It was within a few days after I got out of the hospital after my diagnosis. There was a loop around the college campus that was only about 3.5 miles, and I had run it many times before – although not recently on account of the “unexplained” health issues pre-diagnosis. My best friend hopped on her bike and I borrowed a bike from another friend and we set off around the loop.
Over a decade later, I can still remember how awful I felt that night. I was still adjusting to taking insulin, so my BG quickly dropped when I started pedaling. I had been so sick for so long, but I didn’t realize what had actually happened to my muscles during that time. It was not until a few blocks away from the campus that I realized I really didn’t have much leg muscle left and how absolutely exhausting it was becoming to pedal. I got about halfway around the loop and I couldn’t ride another inch. After more than a decade, it remains one of the absolute worst feelings I have had related to diabetes.
And until recently, it was the last time I got on a bike.
I don’t let diabetes stop me from doing what I want to do in my life. Skydiving? Sure. Snorkeling in the Red Sea? Why not. Participating in disaster relief in Haiti after the earthquake? Twice, actually.
But, for some reason, I was continuing to let diabetes stop me from getting back on a bike. After having the opportunity to visit the JDRF Ride to Cure Diabetes last November in Tucson, and learning more about the ride program, I decided it was time to break down this last barrier.
I bought a bike four days after leaving Tucson. It turns out the saying is actually true – after thirteen years I still know how to ride. I’m working on building my distance now and figuring out how to balance my BG while I ride.
And on November 19, 2016, I will be riding 104 miles for the JDRF Ride to Cure Diabetes in the El Tour de Tucson.
Today, in honor of my 13th diaversary, I am asking for you to support my ride efforts. Please consider donating $13 in honor of each year I have lived with diabetes.
Thank you so much for the support.
P.S. I know I haven’t written in months. Alanna really explained it best here (in November).
Last week I refused to pay over $2,000 in medical bills.
I refused for good reason though, I didn’t actually owe the companies the money they were asking me to pay.
I did have the opportunity to find out that the cost of quarterly lab work when it is not covered by insurance. And it is often NOT covered by insurance if the company hasn’t provided coverage for an individual in over five months at the time of service.
“We will cancel this invoice and reissue a new invoice with the amount you owe.”
(I know they took my insurance card and copied it at the appointment but it looked just like the one before it – same company, different employer, different plan – so they probably didn’t notice it was different.)
At the same time, I received two separate bills from my pump company for service dates about two weeks apart. In late April, I had called them to order pump supplies. At the same time I asked to set up auto-ship. I specifically asked if that would be a problem because I was worried I would mistakenly get a second order once the auto-ship was established that insurance would not cover. I was assured that it wouldn’t be a problem and that if someone tried to process an order it would not go through because they would be able to see the previous order.
I probably was not as surprised as I should have been when I received a box of pump supplies two weeks later. I called the same day and was emailed a shipping label to send the box back. No sooner had that box likely arrived back at the pump company, that I received yet another box with another three months of pump supplies. I didn’t even open the box before calling again, getting another mailing label, and sending another box back.
The rep on that particular call was amused when she noticed that the same person had processed both the second and third shipments. She thought she fixed everything but said we couldn’t be sure until my next scheduled delivery. That’s now actually, and while I have received an email that my supplies are on their way, I haven’t actually seen them yet.
A few weeks after the three boxes arrived in succession, I received a bill for the first shipment. On my current insurance plan, I don’t pay a copay on pump supplies. When I called the insurance company the representative said that there were two ways to process the claim and one would result in a copay and the other would not. I suggested that they run it the other way, and she agreed. End of that bill. Then I started receiving bills for the other two shipments. At first I ignored them because I figured the returns had not finished processing yet.
When I received copies of the bills from the pump company again in late July, I called the insurance company first to see what happened on their side of the process. They tried to help me but (I can only assume) got so buried in the paperwork that they said they would have to call me back. I am still waiting for that call.
Next I called the pump company directly. It was after hours so I left a message with billing and asked to be called back. I waited for a call for a day and then I tried again.
The tl;dr of THAT conversation is that the returns did not make it back to the billing side of my account. In fact, my insurance has paid the pump company for at least one of the returns. I feel like I need to spend another hour on the phone with the insurance company to make sure that they know that they are owed money back, but it’s not my job.
For me, that is the most frustrating part of this whole fiasco, and every battle I have to fight with every insurance and diabetes supply company. It’s not my job. It’s not my job to make sure that a single order is not filled three times. It’s not my job to make sure that a claim is not sent to the wrong insurance company. It’s not my job to prove that the insulin I’ve been taking for seven years is still the right insulin for me and shouldn’t be replaced by a different insulin that got a better contract with the insurance company. And on and on.
All those incidents add up, and the time it takes to deal with each one of them affects my ability to have the time to do the tasks that actually are my job. I know I can win most insurance battles so that’s not usually the part I am worried about. For me, the most frustrating part of the whole fight is the minutes and hours lost each time.
Let’s ignore for a moment that I haven’t posted in two months. Working in diabetes all day takes a bit of the motivation away from writing about it at night. Unfortunately something happened last night to bring a little of the motivation back to the surface.
I was invited to tell my story on a local diabetes radio show. Typically when I share my story I share about the importance of diabetes education – education for the general public about the signs and symptoms of diabetes and continued education for people after they are diagnosed. Those two things would have made such a difference in my diagnosis story and life.
I was on the show with two doctors who primarily deal with diabetes complications. We talked about the importance of being prepared for appointments and making sure your doctor always does a full exam to spot any complications while they are still easily treated.
At the end of the show the host always asks his guests how we get more people with diabetes to go to the doctor. Recent news brought one thing to mind and my response was that we needed to take the shame out of diabetes. It needs to stop being the pun of someone’s joke. Why would a person go to the doctor if they 1) think diabetes is not that serious and 2) think that it is their fault?
The doctors also had an opportunity to answer the same question. One of them suggested that instead of waiting for people to go to the doctor, we should instead go out into the community where large groups of people with diabetes might be and meet them there. I’ve heard that plan suggested before and even saw a presentation about its success at a conference in Florida.
It would have been a positive way to end the interview except the other medical professional then says, “You want to go to where people with diabetes are? Try fast food places.”
It boggles my mind how much work is left to be done.
I don’t think that I’ve carried my blood glucose meter in the actual meter case for four or five years now. A coin purse or wristlet is a lot easier to find at the bottom of a dark purse than a black case. Seeing a fun case (it was a Diet Coke themed change purse before the current option) also adds a small amount of joy to what can sometimes be an annoying or frustrating task.
I like this case for the cupcake theme but I wish it had an inside pocket to hold the used test strips. I try to empty the used strips into the empty test strip canister when I start a new one but I don’t always remember and the “collection” grows.
When your test strips are gold, it’s difficult to clean them out.
Special cupcake shout out in honor of the weekend nuptials.
Yesterday we kept stuff in, so today let’s clear stuff out. What is in your diabetic closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to. Why are you keeping it and why do you need to get rid of it?
It looks like I am going to be playing blog post catch up for the rest of Diabetes Blog Week. I thought I’d get caught up Tuesday and Wednesday’s posts on my plane ride Wednesday afternoon (#itstartedwithcupcakes) but I could feel the eyes of the guy in the middle seat repeatedly drifting over to my computer screen and that didn’t make for very comfortable writing. I knew it wasn’t just my imagination when he asked me about the work project I had decided to tackle instead.
Speaking of work…
When I first started blogging, I had just moved across the country for a new job. I didn’t know anyone in my new state so it was a way to keep in contact with people back home. I eventually fell into blogging about diabetes, especially as I found more and more people who were doing the same thing. But in my earliest posts, I talked a lot more about my job than I felt comfortable doing in the years that have followed.
I never had much of a problem talking about my blog at work, but it was a different story talking about much of my work on my blog. Most of my job involved meeting with and listening to the stories of other people. It was hard to share about my job without crossing some pretty serious privacy boundaries. Selfishly, the other reason that kept me from talking more specifically about my occupation was the idea of people asking me to help them off the clock (like asking a doctor to look at a rash during a dinner party).
When I moved to Las Vegas a little over two years ago, there still wasn’t much to talk about related to work. I had completely changed career paths but now I was working for my extended family at their small business. That added another level of privacy issues and boundaries that made writing about work very challenging.
As of about eight months ago, my occupation and my diabetes have a much closer connection. Working for JDRF brings a completely different set of challenges about blogging about work. Part of the reason why I haven’t written as much in the past few months is that it is incredibly time consuming learning a new job and planning huge events but the other part is that I am still navigating how much I feel comfortable sharing. There are important stories to tell though, because I think there are a lot of misconceptions and incorrect assumptions about the day-to-day work life in a job like mine. I hope to start sharing more of those stories soon.
Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)