Conquering life living with Type 1 Diabetes

Tuesday, April 29, 2014

"Continuous Glucose Monitor (CGM): Why Can't We Use It?"

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"Type 1 diabetes is a daily struggle between high and low sugar levels. One tool, a Continuous Glucose Monitor, makes life easier. At age 65 this device is taken away."


I am not near retirement but fear I will not retire because Medicare currently does not cover CGM.

Go here: http://sixuntilme.com/wp/2014/02/19/guest-post-crusading-cgm-coverage/ to Kerri's blog to read about how you can help get Medicare to cover CGM!

Also go here: https://www.popvox.com/bills/us/113/hr3710



Wednesday, April 23, 2014

Novolog vs. Humalog

1 comment:
I want to hear from those of you out there on this one, please. 

I am currently using Humalog in my t:slim insulin pump and I do not have any issues with it.  Prior to pumping I was on Novolog because at the time it was my insurance company's preferred brand.  Now the insurance I have doesn't care which one I use. 

Here is my hang up, Novolog gives a discount card good for two years.  http://www.novolog.com/NovoLogSavings/NovoLogSavings.aspx I would pay $25.00 per month if I use it.  I am paying $50.00 per month now.  We are talking about a $300.00 difference.  That is HUGE!

Do you think I should try switching to see what my results end up?  Does anyone use this discount card now and do they let you renew the discount card after two years?

Someone PLEASE chime in!

I am very sensitive to insulin so I wonder if I change, will I have to start at square one adjusting my pump settings?  Or do most of you insulin sensitive people see not much of a difference?  I know there is suppose to be much difference but as you all well know, your diabetes may vary. 

Bayer Contour Choice Program has been extended

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I just got done going through the Prior Authorization fiasco with my health insurance to get more than their measly 150 they want to give me each month.  I get 300 a month and yes I am on a Dexcom.  There are some days where I am  having a hard time and test my blood sugar 20 times, there are some days I test my blood sugar 5 times and there are some days I test my blood sugar 10 times a day.  So if they give me the measly 150/mo I end up rationing my blood glucose test strips which you all know what that means, really crappy control.  I dont know how anyone can only test 5 times a day every single day for 30 days.  I just dont.

So after my Endo sent in the forms for me to get 300 I get my approval letter stating that I am approved for 140. Huh? 140?  They come in bottles of 50 not 10.  So I called my Endo's office, yep we asked for 300, ok great thanks! So I call my insurance and after waiting forever they discovered I did get 300!  YAY! GREAT!

I called the Contour Choice program hotline to ask if my card was still good.  He says he has no way of telling me that I have to ask the pharmacy and he also said that they have not yet extended the discount card program due to end May 31st.

If you go to: http://www.bayercontour.com/Meter-and-Test-Strip-Savings/ContourCHOICEProgram/Home You will see that is states it now ends 12/31/2015, yep thats right the people giving out the information on the hotline at Bayer don't even know this!  Awesome! 

Call the pharmacy to give them the good news.  Or so I thought.  I asked if my Contour Choice program card was still good and she said no it is expired from being used 12 times.  So I go online and renew my discount card and then it finally works!  My test strips will again go from a co-pay of $50.00 down to $15.00  It is a pain in my butt to get this done every single year but holy smokes does it save me a lot of money!  It goes from being $600/year for test strips down to $180!

If you are using the Bayer Contour Choice discount program it has been extended, just go to the link and renew your card or if it gives you fits, act like you are getting a new one and it will then renew the old one.  I had to go this route to get it done!

Thursday, April 17, 2014

My replacement t:slim has a screen problem

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Last week I had Tandem Diabetes send me a new pump since it shut down when I plugged it in to charge.
Well now this one started having black spots on the screen and I called the other day to get it replaced. It should arrive by tomorrow.  The spots are getting bigger and more of the screen is blacked out. Kind of strange and wierd. Im not sure what to think of it.
I still love my t:slim and their customer service. Just a wierd new issue.

Wednesday, April 16, 2014

Did you know you have the ability to help guide the FDA to require test strip companies to make more accurate strips for us?

1 comment:

FDA has two draft guidance documents about blood glucose meters that are open for comment until May 7 -- and it is encouraging the public to share its thoughts and suggestions. Join us in commenting. We have links to details, sample comments and a how-to guide. 

  •  MAY 7TH, ok that is the deadline.  There are like 277 comments and that is IT!  

  • WHY haven't you commented yet?  I know I have.  

  • Do you want more accurate test strips? Did you know your meter is allowed to be 20% inaccurate?

  • Did you know right now there is no testing of the strips that are being made now?  They can be more than 20% off because no one is making sure they are NOT more than 20% off.  Inaccurate test strips can lead to serious consequences, insulin doses are based off the number that is on your meter's screen. That is serious business, inaccurate insulin dosing can lead to an ER trip or more seriously, death.

    Did you know we can request the FDA to make our test strip and meter MORE accurate?

     

Monday, April 7, 2014

My Tandem Diabetes t:slim pump had a bit of an issue Sunday morning.

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My t:slim pump decided that on Sunday morning after my shower with wet hair and trying to run out of the house to do errands that it was going to shut down when I plugged it in.  Totally shut down, like how they ship it to you, totally off.  Black screen, no feedback, no green 1,2,3 circles, nada, nothing, zilch. 

I have heard nightmare stories of people shutting theirs off for whatever reason and the memory being totally wiped clean.  Yeah.  I am one of those idiots who hadnt uploaded their pump lately and tweaked a bunch of settings, AND had none of them written down.  SMART.

Yep and it wouldnt turn back on no matter what I did.  Major FREAK out moment.  I tried plugging it in unplugging it, holding the on button, everything and nothing worked. Then finally it turned back on and said welcome to your new pump whatever screen.  YEAH so I called Tandem at that moment.

Got a SUPER awesome lady on the phone and she helped calm me down after a few choice swear words and me apologizing and she said it was ok, I know youre not swearing at me.  HAHA!  Yeah I was swearing at my pump and my stupidity for not uploading. I forget her name, but she was great.  She talked me through getting the pump to realize it had insulin in it, after I had to of course, prime the mandated 10 units of insulin.  Then THANKFULLY my settings had been preserved in the memory somehow.  I don't know how but they were.  They are written down now.  I have yet to upload, I was waiting for my new pump to arrive before I plugged it in again for fear it would shut down again.

Now I am afraid to plug my pump in.  Yeesh.

I am on a Facebook Tandem tslim goup and it sounds like I am not the only one this has happened to, quite a few people had the same problem.  So I asked everyone who that this happen to reply so I can call Tandem and ask them what is going on. 

My replacement pump was flown to me via American Airlines on Sunday and I got it this morning via  a courier service from O'Hare Airport.  That's crazy, but awesome since I have NO back up system.  Another DUH moment.  I called my Endo to get an RX on file for some long acting insulin and to see what sort of process he wants me to use for my back up.  I really do not want to use Lantus or Levemir.  Both of those insulins hate me and put me on a roller coaster ride from heck. 

I want to give a huge thank you to Tandems awesome customer service for getting me a new pump right away and for getting me off the ceiling with my level of stress when it shut down.  It's hard to explain how important that little piece of metal is to someone who is not a pumper.  It is the key to my life basically, I cannot function without it. 

Diabetes Mine discusses the recent NY Times article on the Cost of Diabetes Innovation

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http://www.diabetesmine.com/2014/04/new-york-timeson-diabetes-costs.html

Diabetes Mine has brought up the discussion over the NY Times article on new Diabetes Innovation and its costs.  Dr. Joel Zonszein obviously doesnt know what it is like to live with Diabetes as he states CGM technology offers dubious improvement.  Really? You gotta read this article on Diabetes Mine.

Thursday, April 3, 2014

Why are people so afraid of change?

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I had a good convo with my Dexcom rep today about why so few people in my area know about the Dexcom.  Joe you are great, thanks for talking with me today.  

He said the number one thing is that Doctors and their supporting staff are afraid of change.  Change can be scary I suppose but Diabetes is an ever changing disease.  Type 1 Diabetes is always changing from day to day.  Why wouldnt you want the best tools available to help your patients stay on top of those moment to moment changes?  Why would you put your patient on a Medtronic sensor when their success rate is so low.  Not even 50% of Medtronic sensor wearers are wearing the sensors daily at 6 months.  So whats the point of puttting people on it still?  Really?  Especially if you know the long term success rate is so low. Why would you not want whatever is the best for your patients?  If one brand of sensor doesn't work for them why would you not want to give them another option? 

Medtronic sensors hurt, or at least the last version did and you have calibrate them ONLY when you blood sugar is stable and I hear over and over again about the range being crap.  Like you can only have the pump and sensor 6 inches apart?  Yikes.  My Dexcom is on my arm and my receiver is on my desk.  At least three feet apart.  I can calibrate my Dexcom whenever the heck I feel like it and it only requires one every 12 hours.  Easy as cake. 

Carrying an extra device is kind of a drag but the trade off is worth it and you don't have to be on a pump to get the Dexcom.  Dexcom is pairing up with Animas and Tandem Diabetes.  I am on the Tandem pump t:slim (which I LOVE) and Tandem hopes to have it available this year.  I am guessing it will be early next year, but that's just my guess. 

I have been a Dexcom wearer since December 2011, I think.  I have maybe, maybe not worn it for 3 weeks total in those many months. 27 months of continuous wear and every so often I take a one day break.  I took a 4 day break once and I seriously thought I was going to have a mental breakdown.  I couldn't handle not knowing what my blood sugar was doing.  I couldn't do it, it was crazy. I cannot go backwards in my Diabetes care.  My Dexcom and pump have become my  lifeline.  I could not imagine going to shots and no CGM.  Knowing what my blood sugar is doing all the time and going to sleep at night with a little bit less worry is revolutionizing for my Diabetes management.  

The Dexcom has been such a game changer for parents.  I could not imagine going to bed wondering if my child would crash in the night or not and possibly have a seizure or die.  The parents in the Dexcom groups I am in are just completely in love with this system and it has saved some of their sanity and worry about their child sleeping at night.  If my daughter were to ever become Diabetic (I pray every day that she doesn't) the first thing I would get would be a Dexcom. No doubt in my mind for one second.  If I could get it for my Diabetic dog also, I would.  Some of these parents schools give them such an incredible hard time about asking them to manage their Dexcom and it just kills me to hear that.  This tool makes their job so much easier to help keep these kids safe.  Its called change, don't be afraid of it, you should want to change and learn and help these kids.  Getting told you are Diabetic to begin with is very hard and it can be very secluding and depressing.  No one else gets it.  Kids don't need their school to throw a huge fit over them having a Dexcom or a pump.  Don't make them feel any more less normal than the other kids. Diabetes can make you feel like an outcast and as a kid with the pressures of school, I cannot imagine how they feel. I was diagnosed after high school so I didnt deal with a lot of the b.s. I hear from other people.

My t:slim pump is also a no brainer and people are still afraid of it.  The ease of use of this pump, for me, is a hands down winner.  No changing to a million different screens, no more scrolling up and down to enter bgs or carbs.  All touch screen.  Hello, it is 2014. Who wants to look at a way out of date analog green and black screen?  Medtronic has a great pump dont get me wrong and I had great luck with it but they need to get with the program, they didnt even redesign the newest pump.  I can litterally enter my bg and carbs and take a bolus in seconds with my t:slim.  Not possible with Medtronic. 

I am excited for the upcoming Dexcom & Tandem innovations.  Sending my bgs to my smart phone and a paired t:slim pump and hopefully in five years a closed loop pump/cgm combo.  Wearing a device that just manages my Diabetes sounds like magic to my ears.  So many innovations on the horizon and so many things to look forward to.  

My point being if you are a health care provider and are refusing to learn the Dexcom system or a new Pump brand or refusing to show it to your patients who are out of other options or are needing the extra help, shame on you.  Shame on you for denying your patients the tools they need to manage their disease.  Not all systems work for everyone, we Diabetics need options.  If one doesn't work then we need to try a different one.  Don't just push one brand over another because it is comfortable and its what you know, you need to find what works best for your patient living with this disease. 

I cannot believe in this day and age that Doctors are refusing to learn new technology. 

Do we still use outdated drugs that are less effective than new drugs?  Do we still drive cars made in the 1920's that didnt run for crap and had to be fixed every other day?  Would you sell someone a washing machine that you knew in 6 months would be broken and the purchaser wouldn't use it anymore?  Would you willing buy a car that you knew you would hate in 6 months to a year?

Learn the new tools, show them to your patients, give them all the options on the table, let them choose the systems they think will work the best for them.  We, the people with Diabetes are the ones who have to go home and use these tools effectively and manage our disease without you holding our hand at home or helping us count carbs. 


Wednesday, April 2, 2014

Dexcom can you hear me? Over? 10-4?

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Ok so my Dexcom rep told me that there will not be a Dexcom rep at my local JDRF Walk to Cure Diabetes in May.

Wait? Come again?

For real Dexcom, you just got pediatric fda approval and no one, I mean no one in my rural area has heard of Dexcom!

Hire ME for the walk!

I could sell the heck out of Dexcom. I cannot live without mine and I hear over and over from parents how wonderful its made their lives and their kids' lives.

I have no college degree but I have worked in car sales for 14 years full time 18 years total and I can walk up to any stranger and strike up a conversation.

I just want to sell this product to the people in my rural area, make their lives so much better! I dont want a full time job, I love my current job. I just want to sell your product and show it to the people here. I want to show it to everyone. I want everyone to know it is an option available to them. Its another tool in the diabetes tool bag and not many people know its just sitting there waiting for them to pick up and use!