Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

Bedrooms and roses

The morning after I returned from my first trip to Haiti in 2010, I turned the TV on for background noise as I unpacked my suitcase. As a group, we had spent several hours the night before processing the trip, and the next morning I just wanted some static for distraction.

I can still remember the line from an episode of House Hunters that made me turn off the TV and throw my remote across the room in anger. As in most episodes, a married couple was searching for a house for their expanding family. While they toured the second floor, the wife looked over at her husband and whined, “I don’t want this house; the bedrooms are too close together.”

insulin in haitiI had just come back from a country where people were living in shacks held up with sticks and tarps. A country where you could tell if a child was malnourished by the red tinge of their naturally brown hair. A country where the diabetes supplies in the local clinic amounted to a vial of insulin and a bottle of test strips sitting out on a folding table.

Yesterday I received my new Animas Vibe insulin pump. I have medical insurance that enables me to afford a medical device that costs thousands of dollars and a job that enables me to cover the balance of the costs. I have a butter compartment in my fridge that contains enough insulin that I am not worried about how I will survive the next few weeks or months. I have the luxury of making decisions about my diabetes care, choosing treatment options that aren’t necessarily the cheapest on the market.

I understand my privilege. At the same time, I am not content. I never want to be the type of person who complains about bedrooms being too close together while forgetting that others have no bedrooms at all.

Nine days ago I offered to match up to 24 donations of $10 to Spare a Rose, Save a Child between my diaversary that day and my birthday today. So far, the best I can tell (between comments and Facebook notifications), I am only at $120half of the total match. That amount is the difference between saving the lives of four children for one year and the lives of eight children for one year.

Please consider making a donation today and leaving a comment on this post so I will know how much to match. Tomorrow I will celebrate Valentine’s Day by saving the lives of children around the world. I hope you will join me.

spare a rose save a child

Turning 12 years into 8 years

I don’t know how many people remember how they felt before their first dose of insulin. I do. The exhaustion was overwhelming. By the time I walked across campus to get to class, I was in tears because my legs hurt so much from the short walk. I found myself only wearing shoes that laced onto my feet because the idea of making the extra effort to keep a slip on shoe or sandal on my foot was impossible.

The night I finally arrived in the emergency room, I had also begun to have trouble breathing. I would take a deep gasping breath but it was like my lungs just would not work. The symptom that sent me to seek emergency treatment that night though was my heart. My heart physically hurt. It wasn’t like anything I had felt before or have felt since. It was a deep ache in my chest.

Vegas 2003

What a difference ten days and the availability of life-saving medication makes!

Without insulin, I could not process the food I was eating to use for energy so my body began breaking down my body fat instead. And in that process, my blood and my body became increasing acidic. I was poisoning myself as each hour went by. I needed fluids, insulin, and potassium desperately. That is why my legs were so weak and why my heart had began to hurt.

Having diabetes is painful. We poke our fingers so they bleed. We jam syringes, pen needles, or infusion sets under our skin to deliver insulin. But living without insulin is even more painful. It is something that no child should ever have to experience.

Twelve years ago today I received my first dose of insulin and my life was saved. I am honoring and celebrating that day by making a donation to the Spare a Rose, Save a Child campaign. This morning I made my first $12 $10 donation on the site.

Between now and my birthday – conveniently enough, the day before Valentine’s Day – I will match up to 20 additional $12 donations up to 24 $10 donations ($12 not an option, changed up the algebra a bit!).  If we complete the match, it will provide a year of life – in test strips or insulin – for 8 children with diabetes.

Please comment on this post once you make your donation so I will know who to thank and how many donations I need to match. Post anonymously if you’d like, but please leave me an email address (not published) when you log in to comment.

Thank you for helping me save children living with diabetes around the world.

Click the logo below to donate
spare a rose save a child

Why I am feeling the vibe

I guess I’m not actually feeling the Vibe. I’d like to be feeling the Vibe but it hasn’t been delivered yet. But I’m definitely theoretically feeling the Animas Vibe insulin pump.

The warranty on my previous insulin pump ended about three years ago. At that point, I was ready to really consider which pump would be the best fit for me. When I got my first pump in 2004, I didn’t even know there was more than one option. I chose the same brand four years later because that pump brand was still a good fit for me.

During that second pump warranty I received my first CGM device. I couldn’t stop looking at the data. I learned more about how certain foods affected me. I could see my basal patterns and make adjustments a lot easier. And most importantly for me, I felt safer because I had an extra layer of protection at night and could catch lows a lot earlier and decide on treatment.

At that point, I began to contemplate switching to a pump that would be integrated with my CGM (I had no idea exactly how long I would have to wait!). The first thing I did was contact someone I trust who had also recently switched pump brands. She was honest about her likes and dislikes and reminded me of the importance of trying out the pump before making my final decision. We get so used to the shape, size, and feel of something that is attached to us basically 24/7.

All that led to the purchase of my Animas Ping pump in early 2012. That means I’ve basically been waiting three years for the first Dexcom related integrated pump to come to market. Times and pumps have changed since that purchase in February 2012 but I am still confident in my decision – mostly because my insulin choice (Apidra) and set choice (steel) effectively eliminate all the other options at the moment. I’ve got the diabetes management plan that works for me.

VibeHaving choices in my diabetes management plan is one of the main reason I am feeling the vibe. There are now two pumps available with integrated CGM devices. Competition in the market is good for people with diabetes. The approval of this device helps pave the way for the approval of similar integrated pump and CGM combinations. Will this pump change my life significantly? Not really. I don’t plan to stop using a separate receiver. (I know this post has been about integration so that sentence doesn’t make sense. Just a sec.)

I will continue to use a second receiver because I need to in order to be able to continue to use my CGM in the Cloud setup. At the same time I support this pump and what it means. My decision to upgrade with Animas is my demonstration that I support the company and this process. I support the idea that having this integrated pump on the market makes it easier for similar pumps to get approved. I support the idea that the next step after this is a Dexcom integrated pump that can suspend basals in a specific range. And that the next step after that is a Dexcom integrated pump that can adjust insulin amounts based on predicted values.

I’m definitely feeling THAT vibe.

With friends

It’s a difficult place to describe. The idea that I would absolutely never choose to live with a chronic disease but at the same time being thankful for some of the gifts that come with it.

For the first time that I can remember, during the holiday break one of my youngest relatives asked me if I would get the cure for diabetes if they “invented” it. I told him I would ask long as I didn’t have to do anything extreme to get it, but he would have to help me find a new job if they did find a cure.

Speaking of my job, since I’ve now successfully completed 90 days, I can now start using my vacation days. The long weekend earlier this month was the perfect time to head out of town to visit a friend.

Apparently I was not the only person headed out of town because I shortly before I left the office on Thursday, I got a message from a different friend who was headed in my direction.

George was one of the first people I met living with diabetes. I still remember finding his blog in the very early days of the online community. It was so amazing to read about someone who shared such a similar story to my own story. I couldn’t believe it when I realized that he lived only minutes from my mom’s house.

George and I through the yearsThe first time George and I met was shortly after the first iPhone was released. The first thing we did was check out how our blogs looked on this new-fangled mobile device and the second thing we did was take a selfie. I guess not much as changed.

We met for breakfast on his way through town before I headed out on my own road trip. Seven years later we may look slightly different but it is just as awesome to see him and his family. George is an amazing friend and I love catching up on life with him.

Three and a half years ago, I met Wendy in the lobby of the World Center Marriot in Orlando, Florida. We were both at Friends for Life and were anxiously awaiting the arrival of another mutual friend.

It was shortly after that meeting that some friends and I put together a little video for Wendy’s daughter (and apparently 18,500 of our other friends). Even if we didn’t have the diabetes connection, Wendy and I have a lot in common and have a great time hanging out together.

friends take dumb pictures together

friends take dumb pictures together

It makes me sad when I read stories or hear people talk about how people with type 2 diabetes can’t understand what it’s like to live with type 1. Or how a parent of a child with diabetes can’t understand what it’s like to have type 1 diabetes. As much as I hear that we are more than our diabetes, I hear about meaningless divisions between groups of people living with diabetes.

It isn’t even a matter of one group using unfair stigmas in reference to another but even being unwilling to try to make a connection (and dare I say learn from?) at all. Diabetes brought friends into my life that I would not have had the opportunity to meet otherwise, but still it is not the only thing our friendships are about.

So yes, I let Wendy check me in the middle of the night when I stay at her house and she may have access to the cloud data for my CGM so she can watch me while I drive – because it helps her worry less about me. But we also go on late night ice cream runs and she refuses to carb count a shared meal for me when her daughter isn’t home. And we stay up far to late at night talking and don’t make it out the door until after lunchtime the next day.

late night checks ice cream run just dont poke

I have friends that I met because we lived in the same neighborhood, friends that came from being forced to sit next to each other in a class, friends that developed out of working in the same place, and friends that I found because we are somehow connected to the same frustrating disease.

Most friendships begin because we share something in common, but how sad if that we can’t look beyond simple disease classifications.

Nighttime is NOT the right time

My BG during happier times. DAY times.

My BG during happier times. DAY times.

I had an endocrinologist appointment three days before Christmas. We looked at my A1c and my Diasend (pump, meter, CGM) download. My A1c was about the same as it was during the previous appointment. I remember the nurse practitioner specifically saying during the visit, “I don’t see anything to change.”

Something happened after that and I can’t figure it out.

Over the last few weeks, my daytime numbers have still been right where I want them. But the moment the sun goes down, the arrows on my Dexcom go up – or double up. I have a tendency to focus on the bad and not the good so I downloaded all my data into Diasend last night to make sure it wasn’t just my imagination. Unfortunately, I saw mostly red after 4 pm.

I did a complete nighttime basal overhaul (not medical advice: contact your favorite medical professional before making any treatment decisions). I’m hoping it will help get everything back on track. I just don’t understand. With no change in weight, food choices, food time, pump sites, insulin type, weather, or direction the wind is blowing – how could numbers work one day, and be horribly wrong the next?

 

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