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Upgrading My Healthcare Experience – DBlogWeek Day 4

I think that I may spend more time on the phone with my insurance company throughout the year than I do speaking with my healthcare team.

Go back and re-read that.

This is coming from someone who gets a good 30-45 minute discussion with my educator at every single visit (I see an ARNP not endo).

That would be very high on my list of things to change. That the insurance companies actually read the notes from the previous callers because every single time I have to explain the situation and that’s when my frustration levels begin to rise.

Another issue I would like to see fixed is that when I actually pay for health insurance, that they provide some sort of prescription co-pay. Currently, I had to change to a temporary plan due to a marketplace hiccup, if you will. With this new plan, there is no prescription coverage, basically I pay whatever the pharmacy discount is. So for my 6 vials of Novolog (or Humalog or Apidra, doesn’t matter) it will cost me just under $1,000 and that includes the co-pay assistance from Novolog. Just last month on my previous plan, it was a $25 co-pay.

I’m sure this is one is going to be listed on everybody’s post today – Choice.

I think that one explains itself.

I cannot complain against my medical visits because I get a good 30-45 minutes and it’s an actual discussion back and forth with my educator. We figure out what went wrong, what worked, and make a plan for the next 90 days before we regroup again.

I know that is not always the case, so I would like to see that my doctor be able to get paid for the time that they put in. A lot of education is missed out because they don’t get reimbursed for it, and that doesn’t help anybody.

I would also like to not have to hear stories anymore from people that say, “what?? You’re doctor emails back and forth with you??!!??”

Yes, I will email her and say, hey I just uploaded 7 days of sensor data, can you take a look and she will respond with what she thinks.

Now, do I think that she should be able to bill for that? I don’t know. Here’s why..

I own a business and sometimes I have to do work in order to either gain a client or keep a client that is work, but not billable work, it’s relationship building work. And that is how I see these emails.

But, I would like to see the healthcare system have a way for doctors to get paid and reimbursed for Skype calls and it not have multiple hoops to jump through.

My primary issue is just a simple customer service one when it comes to insurance. Just simply have great customer service and a great customer relationship management system and don’t be another roadblock in my life for better health.

DBlog Week-ing about Keeping it to Myself

I was never really the type of person to talk a lot about myself and my feelings (except maybe sports, I was pretty cocky when it came to that). Once I was diagnosed, I was still a little shy about my diabetes and telling people, but I got over that within a few months. The main reason was because I wanted to educate people about diabetes, so I was always willing to answer questions or talk about the disease. Obviously, once I started the blog almost 10 years ago, I’ve talked about a lot of stuff, but there are a few areas that I haven’t really shared much about.

The one topic related to diabetes that I don’t speak about much, almost zero amount of times, is – sex.

Why?

There are a couple reasons. First, my mother and I think my mother-in-law sometimes, read my blog. I just had my first child, so yes, I think everyone knows how that happened, but at the same time, this isn’t 50 Shades of Grey Diabetes.

There are a lot of specific topics in the sex realm that can be talked about, but I haven’t spent much time on it (even though I think that maybe these topics should be discussed more frequently):

  • How to deal with a low blood sugar when the mood is hitting
  • Erectile Dysfunction
  • Where the hell does my pump go?
  • Is it ok to disconnect during?
  • Many more topics…

I Can Own My Own Business with Type 1 Diabetes

I would never say that I am glad that I have diabetes, because no matter what, it’s still diabetes. However, I am thankful for how my life has turned out because of being diagnosed with diabetes. Before I get into the “I Can” portion of this, I want to provide a little background for that story.

After I was diagnosed, I lived back at home for about a year before deciding that I was going to go to college in south Florida near the beach. If I was never diagnosed, I would have never made this decision because I was happy where I was at. However, the diagnosis made me feel like I need to do something fun with my life and live life to the fullest, so off to south Florida I went…….and then I met Amanda, who is now my wife and the mother to my beautiful daughter.

None of this would have happened without being diagnosed. I am not a believer in “things happen for a reason” but I do know that without diabetes, I wouldn’t be where I am today.

Now, for the I Can part of this. Growing up, I always knew that I wanted to own my own business, I didn’t know what I wanted to do, but I knew I wanted to be my own boss. After being diagnosed and learning the ins and outs of insurance and knowing that getting insurance as a T1 was going to be nearly impossible, I thought that there was no way that I could own a business.

Well, guess what, I DO own my own business, a quite successful one at that. I DO have insurance. I even got my own diabetes life insurance policy as well, something I was worried about not having after not having an employer based one. So you CAN own your own business with Type 1 Diabetes. 10 years ago around diagnosis, I was discouraged and didn’t think that I would be able to do this. I thought that I would have to work for someone else just so I could have healthcare coverage.

Now, not only do I know that diabetes can’t stop me from owning my own business, I owe diabetes a thank you for helping me start my own business!

Diabetes Life Hacking – DBlog Week

Like yesterday’s prompt, I’m not much of an expert here.  The life hacking tricks that I use for diabetes have all came from other people’s recommendations.  I’m not on the Dexcom currently because of my trial of the MiniMed 530G, but when I am wearing the Dex, I use the glass trick that was mentioned in the prompt and by Kerri.

The only hack that I might have right now is that I use the tape that comes with the Enlite sensors to hold it down on my infusion set as well and it has helped a lot.  I have always had issues with keeping infusion sets staying on my stomach, but this tape lasts pretty much forever.

The tape already has a hole in the middle of it, but I cut the piece of tape in half so that I can put half of it on the the bottom half of the infusion set and the other half on the top part.  This allows me to not cover up the plastic part of the infusion set that connects to the tubing.

Other than that, that’s pretty much my only diabetes life hack.  Hopefully you can find some more at the list of other posts from today for Diabetes Blog Week.

Diabetes Mantras – DBlog Week

Today’s topic for DBlog week is Diabetes Mantra or what helps you get through any of those down times that you may be having with diabetes.

I don’t have many diabetes specific mantras, but I live life with a few.  The most specific diabetes related mantra that I have is… “It’s just a number” and that typically is said when I have a high blood sugar.  It’s just one single number and I can correct it and move on from it.

I wish that I had more to write about this, but I don’t.

I think the two best things to help you get out of a mood are the You Can Do This Project or some Mirror Mantras

Coping with Diabetes – DBlog Week

Today’s DBlog Week prompt is What Brings Me Down.  I’ve always had a difficult time talking about the mental health and depression side of diabetes, because frankly, I rarely do experience it.  I know that it sounds like a cop out, but I truly do filter out the negative thoughts into my brain and channel them into a positive.

Diabetes is tough, that’s for sure.  It’s not easy to wake up every morning not knowing if you’re going to have a good day of blood sugars or a bad day of blood sugars.  Are the same carbs I ate yesterday going to act differently than they will today?  Who knows.  Diabetes has made me such a stronger person to be able to handle everything that it throws at me.

I use the phrase, “it could always be worse” a lot when it comes to any negative situation that comes up in my life.  I believe, at least for myself, that stress only leads to more stress.  So in order to eliminate stress, channel that stress into action. Meaning, take whatever is getting you down or stressing you out, and find the positive of it and do more of the positive.

That is not just something I live by when it comes to diabetes, but life in general.

Diabetes, Me and You – Diabetes Poetry – DBlog Week

Today’s DBlog Week prompt is about poetry.  I am definitely no poet, but I have written poems in my past.  I have no proper training, so I just rhyme a bunch of words that have some meaning to me.  I have written two other poems that have changed my life, and this now become number three.  I wrote a poem to ask a girl out 9 years ago and then I wrote another poem 8 years later to ask her to marry me.

So, here goes nothing.

Diabetes, Me and You

The day I was vomiting and became very sick,

They couldn’t read my blood sugar from just one simple prick.

They had to know my blood sugar, so bloodwork was taken,

The doctor came back and the diagnosis was not mistaken

Chris, you have diabetes and you need an insulin drip,

You can’t eat or drink, but you can suck on this ice chip.

Educating myself and trying to calm down my mother,

I wondered to myself, who else has diabetes, I couldn’t think of another.

As days to months, and months turned to years,

I accepted the disease and overcame all of my fears.

My day’s now require insulin and blood sugar tests,

But my life is no different than all of the rest.

I created a business with type 1 diabetes to live out my dream,

But I couldn’t have done it without my supporting team.

This includes HCP, friends, family and of course my wife,

If it weren’t for diabetes, she would not have been brought into my life.

So for that diabetes, I really do want to thank you,

So until the day of a cure, I will manage living day to day with you.

Changing the Diabetes World – DBlog Week

I am so happy that this topic is part of this year’s DBlog Week.  Even though most of us are advocates, we may not all care as much about certain causes as others do.  And as long as we don’t judge each other on not caring as much about certain topics, than that is a good thing.  We should put the effort into what we care most about.  If you are not passionate about something, it’s pretty much a waste of time.

For me, there are three main areas of concern that I have: Education, Policy and Doing it for the Kids.

Education

When I was diagnosed, I went to the hospital with an 858 blood sugar.  I have told this story a lot, but I had all of the symptoms for a couple of months and knew nothing about them or the disease.  If I would have just had some basic knowledge of the disease, I could have probably gone to the hospital a lot sooner than I did.  This education could be done in a health class in high school or middle school.  Of course, I probably wouldn’t have paid much attention to it, but I would have remembered something about constantly peeing every 10 minutes.

After that initial education of general information about the disease, it is alarming how many people with diabetes, don’t really know anything about diabetes.  This could be for many reasons, and if it’s from ignorance of the person with diabetes, then there isn’t much we can do about that.  However, for those that want to be educated, but can’t because their insurance won’t cover anything more than a 15 minute visit every 90 days, there is something that we can do about that.  What is it that we can do? I don’t know, if I had the solution, than I wouldn’t need to be advocating for it.

How do we solve this issue?  Maybe something to do with the next area of advocacy.

Policy

There are a couple areas of concern that I have when it comes to policy change: Test strip / Meter Accuracy, Coverage of CGM and Insulin Pumps, and Education.

With the effort from the community recently on the amount of comments on an FDA docket, you can see how a little effort can go a long way. Strip Safely is by far the best place to learn more about advocating for meter accuracy.  If you would like to know what you can do to help, please visit the site or reach out directly to any of the founders ( Bennet, Christel, Kerri just to name a few).

There is enough data out there to show that those wearing CGM’s have a better chance to manage their diabetes better than those who do not wear CGM’s.  Please, do not try to argue with me that you are doing great management without a CGM, because that is not what I am saying here, so save that for something else. For those that wish to wear a CGM but their insurance doesn’t cover it because it is not a tool used to dose insulin means that a person is not allowed to have one…. that’s just ridiculous.

Also, I live in a state, Florida, where state Medicaid dollars will not cover an insulin pump, without at least 157 hoops to jump through. This is just not right. This is an area that frustrates me because I know how much better my management is with a pump than without it. Once again, Your Diabetes May Vary, so save the argument. But, to not be given the choice of how you want to manage your diabetes is not a way that those with diabetes should have to live. So, how do we go about changing this?  We have seen advocacy work in the online space recently with getting insulin pump coverage in the state of Arizona.

Doing it for the Kids

As a kid, I did not grow up with diabetes since I wasn’t diagnosed until the age of 19.  However, I grew up aspiring to be a professional football player, which knee reconstruction shot down, but it always felt great to have older football players come in and talk to us and tell us stories and give us the motivation to work hard to get where we wanted to be.  This applies to a lot of kids, and I don’t think it’s any different for those with diabetes.

I’ve had the pleasure to attend several diabetes camps, meet-ups, and talk sessions where I was able to talk with kids from the ages of 8-16 and tell them stories and relate to them instead of their parents just always lecturing them. I’ve received emails from parents thanking me because they saw an instant change in the way their child was acting towards their diabetes management, and when that happens, it makes me feel that everything that I do is worth it.

In wrapping this up, don’t feel that you have to be involved in every single issue. If you’re heart is not in it, than leave it to those who are.  You will not be judged and looked as a bad person because you are not posting and tweeting about every single advocacy issue that is out there. And if you are judged by that, then the person judging you is just an idiot

Happy Diabetes Blog Week!

D-Blog Week Day Two – Petition to Diabetes Technology Software Creators

Today is Day Two of Diabetes Blog Week.  Today’s blog prompt is:

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

I am writing a petition to all diabetes technology companies.  As with anything that I write, it’s going to be short and to the point.  There are a lot of us PWD’s that only use Mac products.  I converted several years ago, and I cringe at the site of a Windows based machine.  However, I have to turn on the dinosaur that I call my old Windows laptop in order to export some of my diabetes data from all of my diabetes gadgets.

So, to all of you out there that are decision makers behind diabetes technology, please, I am begging you, that any software that you develop, please make it Mac compatible.

Sincerely,

Mac Users

Day One of Diabetes Blog Week – Share and Don’t Share

If you haven’t heard of Diabetes Blog Week, then click the link and read all about it.  Today’s prompt is:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

I have blogged before that I am very lucky to have the medical team that I have. My previous endo was type 1 herself and wore a pump and knew the daily struggles that I was going through, so I never had to feel like I was making excuses for things.  She totally understood, but would push me to be better. (more…)