Thanks a lot Local and State Government….NOT!

After writing a few blog posts about my thankfulness and appreciation of the DOC, I now want to write a post about the local and state government. This, unfortunately, is not a thankful post. After losing my COBRA insurance almost two weeks ago now, I reached out and sent e-mails to every single local and state elected officials, every advisory board, panel, and organization I could think of. With it being re-election time, I knew that their plates would all be filled and they would not have much time for a voter because they are focused on the masses at this time looking for a re-election.

On the other hand, I thought that I would at least get some sort of responses that explained that, because I could understand that and be fine with that response. However, the responses (the few that I did receive) were not that great.

When it came to the different agencies or groups that I contacted, none of them seem to be the right place to contact. About 5-6 different e-mail responses said, “that’s not something we handle, contact this department.” So, I would contact “that” department, and they would say the same thing. Eventually, I was sent to 5 different groups until it came full cycle and I began getting referred to groups that I already contacted. Either, there is no sort of group out there that can help somebody who just lost COBRA, or nobody wanted to get their hands dirty. I’m going to go out on a limb here and say, everybody likes clean hands during re-election season.

So, it’s back to working with Big Red and Big Blue (ADA and JDRF) about resources or advocacy plans on making sure there is some sort of group or organization that can help fight this.

The adventure continues….

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No COBRA Follow Up – Supply Inventory

It has been a very long week for me. There has been a lot of adjustments, a lot of planning and figuring out what I am going to do for all of my supplies and insulin, etc. Like I said in yesterday’s post, I just wanted to say thank you again. Honestly, I have never been in this position before and it means so much that you all would be so kind and considerate to reach out and help in times of need. It still feels weird asking for supplies when over my almost 10 years with diabetes, I have been the one who has sent supplies out to others. What comes around, goes around right?

I spent a lot of time last week figuring out what my inventory of supplies currently is and how long that current supply will last me before I have to start purchasing items out of pocket. It breaks down like this:

– OneTouch Strips – 400 strips
– MMT397 Infusion Sets – 9
– Reservoirs – a lot (stocked up on these throughout my insurance life)
– Dexcom sensors – 2 (found one in my home office where it wasn’t supposed to be)
– Things to put over my Dexcom sensor in bath or pool (I use a bunch of different items) – 2
– Insulin – I had only 1-2 weeks left, but the insulin fairy hit me and I now have a 3-4 month supply of inuslin. Greatest act of kindness I have ever seen!

So, my two biggest areas of concerns in my eyes are the test strips and the infusion sets. I think that I will be fine with the infusion set side of things because there are some very cool and awesome people out there who are willing to help out.

That leaves me with the test strips side of things. I have a decision to make, do I go with a cheaper strip, like a Walmart brand or such and deal with inaccuracies, or do I continue with one of the most expensive brands of strips and just suck it up and pay out of pocket for them? I am unfortunate to still have a job while living without insurance. I still am making a living, in fact, since I own my own business, I can have more control over how much income I do make and if I have to take on a few more lower paying tasks throughout the month to cover these additional costs, then so be it.

I’m sure that I could easily get more and more strips from my endo’s office, but I don’t want to do that. I’ve seen the community that my endo services and there are people out there far worse off than me financially and could use the strips a lot more than I can.

But, this is where I am looking to hear back from y’all. If you were in my situation, would you go with the higher cost, more accurate, or move on to the cheaper choice and deal with the inaccuracies from the cheaper meter and strips?

Your opinions and suggestions are welcomed.

Thank you once again.

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If You Want It, Go and Get It

The other day I saw a tweet from Rob Dyrdek, from MTV’s Rob & Big and Fantasy Factory.  I don’t remember the exact tweet, but I remember that I re-phrased it on Facebook and it has had me thinking about the tweet ever since then.  Basically, this is what I said, “There’s two types of people you can be.  Those that bitch about the shit you don’t have, or those that work hard to get the things you want.  I know which I am, which will you be?”

Ever since then, I have really been thinking about it.  Not just in my personal life, but in the business side of things as well. I then started relating it to my diabetes as well.  I always talk about how I want certain things related to diabetes, and I want to do certain things.  Well, it’s time to stop talking about them and doing them.  So, here are the top five things that I want and will work my ass off until I get to it.

  1. Omnipod – I’ve been saying for a long time that I want an Omnipod.  I have ripped out so many infusion sets from my wire being caught on the arm of my office chair.  Or a hassle to connect and disconnect when I’m at the beach and I want to go into the water.  The one and only reason that I am not using an Omnipod right now has nothing to do with insurance or coverage.  It is because I use too much insulin.  I would be changing sets every single day.  In order to cut down on my insulin usage, I need to lose weight.  When I was 60 pounds lighter when I was first diagnosed, I was using only about half of the insulin that I am using now.  I WILL work my ass off to lose that weight, so I can start using an OmniPod
  2. A1C below 6.5% – I am definitely not a fan of the A1C, nor do I get too upset when I see a high number.  I know the number is important and it gauges how the last 90 days went, but I know that I can always improve it.  Well, I want it to be below 6.5%.  This is something that is in my control and bitching and complaining about it is not going to accomplish anything.  Losing weight, eating better ,exercising, wearing my Dexcom constantly, are all actions that I can take to accomplish this.  I WILL work my ass off to lower my A1C to below 6.5%
  3. New Jeans – I don’t just want any kind of new jeans, but I want new jeans at the old size I used to wear.  I am not setting any unrealistic goal here.  I want to fit into the size jeans I was wearing about a year or maybe two years ago.  There is nothing better than losing weight back into an old wardrobe.  I have done it before, but I just went back and ate myself right back into the heavy wardrobe again.  I WILL work my ass off to be able to buy new, smaller jeans.
  4. Attend More Events – This year, I really want to attend more diabetes events.  The main reason that I haven’t been able to go to as many as I want to is because of financial reasons.  That will be the same issue this year, but I am working on ways for that not to be as much of an issue.  The few events that I do get to travel to every year are amazing.  I love spending time with everybody that I talk to online and meeting new people at these events.  I WILL work my ass off to be able to attend more events this year.
  5. Make a Difference in my Community – I have plans on being more active with my local government and local leaders on becoming more active with them and getting diabetes in front of their faces a bit more.  I was able to start on this last year, but did not have a lot of success, so I WILL work my ass off this year in order to make a difference in my community.
That’s it.  That’s a lot of things that I want to do that I kept talking about, and I have put some plans together to be able to get this stuff accomplished.
I’ll do a follow up shortly to see how I have done.

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Meetings Scheduled with Local Government Reps

Following up with what I posted last night about the e-mail response from US Senator Bill Nelson, I wanted to get feedback from the DOC about your success and failures of reaching out to your local reps.  I have some meetings coming up with local reps, and I don’t know exactly what I am going to do.  I told them before setting meetings, that I don’t have all the answers or all of the best ideas for, but just getting an opportunity to bring diabetes to somebody with some power is what is most important.

On a local level there is not much that can be done.  I am meeting with the local city reps, so I can’t ask for their help in getting funding for the FDA to proceed with research on the artificial pancreas.  But I will be asking them to be more involved in local JDRF and ADA events.  If need be, I will speak to large groups of locals about diabetes and get some truth to these people instead of the false “facts” that they are hearing on Oprah and Dr. Phil and Dr. Oz.

I am asking for your help DOC…what items have you had success with on a local level.

I look forward to hearing your comments and suggestions.

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E-mail Response from US Senator Nelson (D-FL)

A few weeks ago I was inspired by a social media victory when a fellow DOC member had written a letter to their representative and eventually they were granted a meeting with him.  After that, I decided to send an e-mail to every single one of my reps.  Whether it was on a national level (to discuss FDA and the artificial pancreas) State reps, and even the most local reps.  I received quick responses from most of the local reps within 48-72 hours.  I did not hear anything back from the two Senators….until today.  And let’s just say, I wasn’t very happy with the response.

First, I could tell that it was an automated response, and most likely not even from him.  The first two sentences mentioned my concerns about the FDA and the artificial pancreas and funding for diabetes research.  After those two sentences, it went straight into campaign rhetoric.  It was mentioned that he will take this into consideration, but his main focus is working on a budget that will help reduce the national debt and work on funding for public education.  So, basically you’re saying that theres no room or no time left of yours to deal with the diabetes issue?

That is why you, as a Senator, have a lot of aides.  Because you may not have the time personally to deal with this issue directly, but one of your aides can speak with people about diabetes, and some of the major issues that are out there and then during one of your meetings, it can be discussed.

I was not a fan of Senator Nelson to begin with, but as the one with power, I had to reach out to him.  I always said that, it doesn’t matter on a Federal level, your voice is never heard.  Unfortunately, this is another example of that happening.  When you are ready to discuss the importance of diabetes Mr. Senator, I will be hear with an open mind wanting to discuss what you can do to better the lives of the millions of diabetics out there.

Thanks.

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