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How I almost didn’t live uninterrupted

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First the punch line – I finally have my 3 month supply of DexCom sensors.
SENSORS!live uninterrupted
In my almost eight years of pumping insulin, and my one year of using a CGM, I have never had so many things go wrong, but also so many people help make it right.

It all started when I put my last sensor in. Long story short (I told it here) – the final sensor of my previous supply turned out to be my first dud. Thankfully I was able to get a replacement sensor fairly quickly.

I wasn’t worried about my supply when I originally put that order in because I typically get at least two weeks wear from each sensor (FDA – two weeks is actually a new term for 7 days).

When I called to order my new supply, the kind rep on the phone let me know that the procedure to submit the order to my insurance had changed. I think I may have scared him a little when I started to laugh. I couldn’t help it. It was the third time in one year, that my insurance procedures changed.

Because he would have to resubmit to insurance, the rep told me he would call me back as soon as he had news. This was the first case on this insurance plan that he had worked on so he didn’t really have a timeline.

Almost two weeks later, I hadn’t heard anything yet and the replacement sensor was nearing the seven day mark. I was worried that I was stuck in an insurance spin cycle.

My local account specialist extraordinaire, Lori, offered to step in at this point and track down my status. She replied to my email at 9 PM Wednesday night, and by early Thursday morning I had an answer – the authorization had gone through and I was ready to order.

I called DexCom to finally place my order and spoke to Michael, the same rep I had spoken with the first time. He apologized for the delay and said he would ship the sensors with overnight delivery so that I would have them the next day.

When I thanked him, he added that he would call me before he left work to give me the confirmation order to let me know the order had shipped. About 45 minutes later, he called me again but it was not good news.

When he tried to submit the order, it would not process because it turns out I needed a new prescription. He had already tried to call my endocrinologist’s office but there was no answer. Thursday ended with the sensors nowhere closer to my house.

I was in a late afternoon meeting on Friday when I saw a missed call on my cell phone – and a second missed call five minutes later. It was Michael from DexCom calling me back. At the first available break in the meeting, I called him back.

He had finally gotten in touch with my endo’s office. No easy task – she abruptly left the practice and they only have a substitute a few days a week. Michael wanted me to call him back as quickly as I could to make sure my mailing address for Saturday would be the same as the weekday address. Due to the hassle of my order, DexCom was willing to pay for overnight Saturday delivery of my sensor supply.

I wish I could tell you I missed the FedEx delivery for a good reason, but to be totally honest – Saturday is my only day to sleep in and I slept through the knock at the door. Once I woke up, I found the note on my door and called the customer service number.

My box of sensors was located at the distribution center about 20 minutes away. If DexCom was going to pay extra for me to have my sensors as quickly as possible, I felt like I owed it to them to actually get the sensors on that day.

overnight saturday delivery!what's inside?

Later that afternoon, using the directions provided on the FedEx website, I headed to the center… and got lost in the industrial park. Their directions led me to the backside of a warehouse and a dead end alley. Did I mention that this center is located in an area where most people just drive by – and make sure their windows are locked?

After driving around in circles for a while, and only having a few minutes left until closing time, I finally pulled over and pulled up a map on my crackberry. Those directions didn’t make sense either, but I at least was able to find the right road. With ten minutes to spare, I finally had those hard fought sensors in my hand – and in the front seat of my car.

I have never had such an ordeal trying to obtain any of my diabetes supplies, but I am thankful that even when orders don’t work out at planned, DexCom employees like Lori and Michael are willing to go so far beyond the call of duty to make sure I can continue to “live uninterrupted.”
take control

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One year ago

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One year ago today was a very important day for me. Any guesses on what I am celebrating? It is something I first attempted in 2007.

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What do I believe

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Meter accuracy is not a new issue.

As I wrote in a post on my other blog back in May, usually my meter and my CGM match up close enough that I don’t spend too much time thinking about the results. That day however, I had results that were 100 points different from each other within one minute. Three test strips, one DexCom, and I still had no idea what number to believe.

Accuracy

At Friends for Life, I received a coupon for a free meter from Nova. When I first started pumping in 2004, Nova was the brand that was linked to the MiniMed pump, but I remember nothing but accuracy issues from that time. I trusted OneTouch and doubted Nova. Now I’m not sure who to believe.

The new Nova meter came with 10 strips which I used to conduct a little experiment. I wish it wasn’t so difficult to get test strips because I’d love to try a few different meters at the same time, but not enough to pay out of pocket (at $1 a strip) for them.

The past two weeks or so, I use different situations (high, low, steady, dropping, etc) to see if I could find some sort of pattern (Kerri also recently checked out accuracy).

8-02 8:55 pm - 160s or higher?Nova and DexCom seem to agree, with One Touch significantly off.8-02 11:49 pm - somewhere around 150Nova seems a little lower than the other two (but without doing the math, I bet they are all within 20%).

8-04 8:42 pm - matching?We seem to all agree on this one. Time for a snack.8-06 7:50 pm - two hundred ??OneTouch loses again.8-08 7:51 pm - steady at what number?They all agree that it is time for a snack.8-08 10:53 pm - dropping againDifferent night, same snack.8-14 3:51 am - dropping but how far?Note the time on this one. Can I also point out that this is why I am frustrated.

A lot of the time they all agree, but then sometimes it’s a mess.8-13 11:38 10 pt difference. 8-14 12:28 29 pt differenceI had inserted a new DexCom sensor so I was waiting for it to warm up. Totally surprised by the results at 11:30. Then at 12:30, I was frustrated by the difference. How quickly was I dropping?
8-14 12:28 am - DexCom in warmup periodSince the OneTouch didn’t agree with itself (?!), I got out the other meter for a comparison. That is a pretty significant different when I am worried about dropping too quickly.8-14 1:05 am - DexCom in warmup periodSame night – at 1 am, another Nova comparison. Since I didn’t have a CGM ready as back-up I really wanted to know if I was still dropping before bed. I was, but by how much?

frustration!

I have absolutely no idea what to do next. Other than put all my meters somewhere special.

What I can do is write and speak

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For the first time, I am participating in the DSMA Blog Carnival. Each month, a topic is selected for us all to write about and take the first few steps towards brainstorming a solution.

Here is the topic this month –

Let’s discuss the lack of diabetes education, supplies and insulin for PWD’s living here and in other countries. What can we do?

This topic is one that is very close to my heart. I have had challenges in my life with diabetes. I have had times of rationing supplies and balancing my budget to make sure I can cover all my medical bills.

There was a time between the end of college and my first full time job that I purchased insulin just across the Mexican border. I know how very privileged I am now that these were my only struggles.

Two years ago, on my first trip to Haiti, I looked around for people living with diabetes. This was the only evidence I could find.

diabetes evidence

I took that picture in the hallway of a “hospital” where patients were recovering from orthopedic injuries from the earthquake.

When I asked one of the workers if she had seen anyone with type 1 diabetes, she couldn’t remember a single case.

Traveling back to Haiti this year, I began to understand more why that may be the case.

finished house with cactus fencebathroom building

If this is your home and your bathroom, tell me how you can watch your carbohydrate intake or keep your insulin at the appropriate temperature? There is no kitchen as we would expect in American homes, cooking is typically done in the front yard.

Food choices may be deciding what meal to eat rather than what to eat for that meal. I can’t imagine being faced with the decision of feeding your family or trying to find medicine for one of your children.

I recently had a conversation with people from Frio and they mentioned that they try to offer their product to people in Haiti and other countries in similar situations and they have trouble finding people to use the Frio packs.

Those in need of insulin are just not living long enough!

I have no idea how to solve this problem that seems so overwhelming. I know that we need to keep talking about it in the diabetes community. No matter what are circumstances and struggles are, if we are privileged enough to have access to a computer to read and/or write blogs, we have a duty to stay involved in this issue and continue the conversation.

This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/august-dsma-blog-carnival/.

Insulin pump hackers do not care about me!

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And “they” don’t care about YOU either.

In my last post I mentioned that I don’t typically get fired up about every issue related to diabetes. My ice cream supply was threatened, and so I took action.

Well, I would like to revise my previous statement. There are TWO things that I will fight for if they are being threatened – ice cream AND my insulin pump.

In case you have been living under a rock (or you are one of the few people reading who are not in the diabetes community) the past few days, there was story that caught the eye of the press who love nothing more than to scare their readers and listeners. Evidently, some Type 1 techie hacked into his insulin pump and sensor to basically prove it is possible.

Sure, it’s possible – So is me winning a million dollar jackpot (which I would of course spend on a jet for even better diabetes meet-ups). Are either going to happen any time soon? Not anywhere close to likely.

I am not an expert hacker or anything, but I think they usually go for the biggest “bang” for their buck. This “hack” would have to be done on a person by person basis and within a relatively close distance.

Although an attacker would need to be within a couple hundred feet of the patient to pull this off, a stranger wandering a hospital or sitting behind a target on an airplane would be close enough.

I guess we should all keep an eye out for suspicious people wandering the local hospital and be careful if we recline our seat on our next flights.

The diabetes community is not the next target for hackers.

You know what this “story” is going to do instead? I have lost track of the number of products that I have heard about that are stuck in the FDA abyss waiting for approval. This is just another stupid hoop that the medical device manufacturers are going to have to jump through before the products we NEED and DESERVE can come to market in the US.

And that’s all I have to say about this topic.

Here is what other bloggers have to say:

Kerri

Bennet 1, 2, 3

Scott Hanselman

Kelly Booth

And finally, responses from Medtronic and Animas.

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When the moments are not so wonderful

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In terms of genetics, I drew the short straw. While I am the only person in my extended family with type 1 diabetes, there are quite a few examples of autoimmune issues on my dad’s side of the family.

By having diabetes, and as a result of some other circumstances, I drew another short straw. Did you know that people with diabetes are at a higher (maybe even double) risk of also having depression? (source)

My bachelor’s degree is in psychology so I can identify the signs and symptoms pretty easily. The step between knowing and doing something about it is a big one.

In February, I took that step and got help. It has not been an easy process. With the help of a medical professional, I made the decision to try medication.

The first medication that I was prescribed worked pretty well but it was not approved by my insurance and I could not afford the out of pocket cost for it. I tried another medication and it has taken a while to get the dosage and timing right for me.

If you have diabetes and think you may be struggling with depression, please seek help. It may be scary at first to admit you need help but you will feel so much better when you do. The community will be here to support you just like they were for me (thank you to those I was able to contact by DM and text).

I am living with diabetes and depression and still enjoying every moment of wonderful.

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My squiggly eyes

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An appointment that strikes fear in the heart of every diabetic, I had my eyes checked last week.

My insurance has changed since my last appointment, so it was off to a new eye doctor.

During the nurse’s pre-check, she noted that I had marked ‘diabetic’ on the form. She asked if I had tested my blood sugar that morning (it was about 3:30 pm by that point). I chuckled and said that I had tested that morning and about 4 other times during the day.

She tried to do the eye puffer thing, which I have an irrational fear of so I asked her if we could test my pressure some other way. She said the doctor could do it with drops that might turn my eyes a little bit yellow, and I though that sounded like a great plan!

Without my glasses, I can’t see much beyond the first E. Seriously – they tried it and all I could do was guess. With my glasses I had 20/20 vision. They updated my prescription to give me 20/15 so that I could, “play golf with Tiger Woods”. (Yeah, um, I don’t know what that means either!)

The eye doc also asked about the diabetes while we were waiting for my eyes to dilate. We joked about the nurse’s earlier question. He said that I am one of his youngest patients – welcome to South Florida, this office is right by a retirement community. Most of his patients don’t routinely check their blood sugar, and/or are in denial about their condition.

I had a picture of my eye from the expo at CWD, so I showed it to the doctor so he could compare it to what he was seeing. I’m glad I did because I have ‘squiggly vessels’. Where most people’s eyes have vessels that leave their optic disk in a straight-ish line, my retinal vessels are a little more quirky. Nothing wrong with it, but he said he would have been concerned had he not known it was a constant.

It was finally time to pick new frames. I am either lazy or a nerd, because I like glasses with the magnetic clip-on sunglass portion. They didn’t have too many options in the frame shape that I like, so the saleslady said she could order a few more options in for me to take a look at. Unfortunately, because of the short week this week, I won’t be able to get my new glasses until probably the second week of December. Stay tuned!

During my visit, I overheard them talking to an older man who was on Medicaid. It was very sad to hear the comparisons about what I could receive on my insurance to what he was eligible for. I am very thankful for my job and my decent (yet expensive!) insurance.

Finally, it wouldn’t be an eye exam day if I didn’t take a picture of my super dilated eyes when I got home!

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