Yesterday, the Diabetes Patient Advocacy Coalition (DPAC), launched the Suspend Bidding Action Center. Even if you are not using Medicare now, you may be one day, and people are using it today. People should not have to have their health suffer because they are on Medicare. That is exactly what the Competitive Bidding program is doing.
Please check out the Suspend Bidding Action Center as well as the infographic below for more information and to take action:
I don’t think that I have ever written about my pump breaks on here, but I know that I have mentioned them on Twitter before. Basically, at least once a month I like to take a break from my pump.
The first question that you may ask is, “does this have an impact on your blood sugars?” You’re damn right it does. But, I don’t care.
Let me explain.
I don’t care because sometimes I get frustrated by my pump. I may have 3 consecutive days of needing to change infusion sets for whatever reason. Maybe one fell off doing hours of yard work in 90 degree weather. Maybe I decided to take a nice, long, hot relaxing bath which made the infusion set adhesive wear away and easily fall off afterwards. It may even be possible, that I just don’t feel like inserting a new infusion set that night, so I just go a couple of nights without wearing one.
Warning….if you live your diabetes life on label and the thought of people doing crazy, off-label stuff makes you upset, then please do not read any further, because the following is definitely not prescribed, nor approved of by my doctor (and not really me either, but sometimes, I don’t care and my sanity means more to me.)
I always have a full supply of syringes as backup. When I am off the pump, I just use a vial and a syringe…take it back old school. When it comes to basal insulin, well, here is where we trail off that on-label track.
I have two options during these times. My doctor gives me samples of Levemir every so often. If I have a sample pen of Levemir at home, then I use that. I know what your next question is…. “Aren’t the pens only good for 30-ish days after you open them?” Yes, but like I said, if there is still insulin in it, I’m going to use it. One pen only gets me through about a week, which is about all the time that I need for my break. If there is some leftover for next month’s pump break, then I will use it again. If the insulin isn’t effective, then I won’t continue to use it. I will either open up another sample that I have, or, just not use any basal insulin at all.
What?
Yes, during majority of my pump breaks, I don’t actually use any basal insulin at all.
During the day, I keep a close eye on my blood sugar, but when I eat a meal, I will be sure to take what I need for the bolus, and then check again in an hour. If I determine I need more, then I will take more. Basically, I will give myself the 3.5 unit basal amount that I use per hour. During these times, my goal range is a bit higher, I am satisfied with anything under 220. I know that sounds like a crazy idea, that I would be happy with a blood sugar of 220, but remember above when I said, I’m willing to sacrifice an hour or two of a higher blood sugar in order to have sanity and not drive myself crazy having to put in another infusion set that just keeps seeming to fall out.
I do NOT recommend this for anyone. Don’t even talk to your doctor about this method. If you need to take a break from your insulin pump, then do so, but make sure you speak to your doctor about how exactly it would be best for you. Be sure to have an equation figured out to determine what your amount of Levemir or Lantus would be based on what your total daily basal usage is.
I have a tricky calculation, but it never seems to work, so I usually just use the calculation every time, then adjust the next night and then the night after that. Then when I go on the next pump break, I start off where it was working before.
How do you handle breaks from your insulin pump? I would love to hear your stories. Please share in the comments below or on Facebook.
I know, the title sounds like some sort of bad ad copy for a mail order prescription company, but that’s not what it is. I used to get my prescriptions for oral medications filled at Target, but once they switched to CVS Pharmacy, I got out of dodge as quick as possible. I’ve written several different times over 7 years about my disappointments with CVS.
I decided to switch my oral prescriptions over to Publix pharmacy. Publix is a local grocery store in Florida. It is actually one of the companies that ranks in top 20 businesses to work for in the country. I switched because where I live, there is only a Walgreens and a Publix and Walgreens didn’t take my insurance, so Publix it was.
I loved how quick and easy it was to get my prescriptions there. There has never been a line to wait in, they call my doctor for any refills or updates needed, they deal with any insurance issues, they call me if there is an issue instead of waiting until I get there to pick it up, they text me when it’s ready, along with the exact price (my generics change every time so the costs vary depending on which generic they are using), and the staff is very friendly.
Because of this, I’ve actually decided to start getting my test strips and my insulin from them on a monthly basis as opposed to saving $20 and getting a 3 month supply. The mail order pharmacy that I had to deal with was always filled with insurance. If at anytime, I needed refills, or emergency orders, it would take “24-48 hours to process a new refill request, and then another 24-48 hours to ship out”, meaning that it would take a minimum of 2-3 days to get a new prescription or update to my insulin prescriptions shipped out.
I’ve now been using Publix for 3 months now and I absolutely love it.
It has been the easiest time in over 10 years of dealing with insurance and supply refills.
Yesterday, The Diabetes Patient Advocacy Coalition (DPAC) held its March Ask an Expert webinar series. The webinar included Dr. Aaron Kowalski and Cynthia Rice, both from JDRF.
The webinar brought attention to CGM data that shows it helps, data that shows Artificial Pancreas systems work, and how Medicare is not covering CGM’s and why they are not.
Throughout the hour, hearing them both talk, it was constant note taking. A lot of the information that they spoke about I had either heard or seen elsewhere before, but it didn’t all make total sense or fully sink into my brain until yesterday.
The reasoning behind why Medicare does not cover CGM’s is based on 100% BS. We, as a community, have done a great job reaching out to politicians to explain why it’s BS and why the Medicare CGM Access Act needs to be sponsored and cosponsored, but we need to continue the fight.
After every webinar from DPAC, I like to create some sort of actionable plan that I can easily do in order to continue to do something. Yesterday, I set up a calendar reminder once every 2 weeks to send letters, tweets, emails, etc. to my elected officials. Why didn’t I do it every week? Because, I have to be practical for myself and advocate the way that works best for me. I already knew that if I did it every week, it wouldn’t get done and then I would start hitting the snooze or remind button on it and then eventually it would be months later and never taken action on the events.
I also set up a few tweets and posts that I would like to send out over a period of time. One thing that Aaron Kowalski said was, “One thing that I do everyday is just try and get people involved.” That definitely resonated with me. If I can only do 10 things in a day, but I can also somehow get 10 others every day to do something, that is a lot more getting accomplished.
Another thing that I plan on doing in the next few days is to create “My Story” so that I can have saved and ready to just copy and paste when reaching out to my elected officials. As Cynthia Rice mentioned, officials like data, but they love to hear the stories of their constituents.
If you did not get a chance to attend the webinar, then you can watch the replay.
As some of you may recall my niece was diagnosed with type 1 diabetes back in October of last year. The diagnosis was a few days before Halloween and also her birthday. She has been handling the diagnosis like a champ since day one. Fast forward a few months, she is wearing a Dexcom and Omnipod and playing soccer. Back in January, I was up in Pennsylvania for a quick little family visit and I had the honor of being her guest speaker at her Daisy’s meeting in order to get her Defeat Diabetes badge.
During her presentation to her Daisies she showed famous people with diabetes. One of those people was Sierra Sandison. She had a few pictures of her. One of her showing her insulin pump, her book and another one wearing her Miss Idaho crown. My sister in law had told me that she loves Sierra and always talks about her.
I wanted to do something for my niece because she has been handling the diagnosis so great, so I reached out to Sierra to just ask if she could do something for my niece.
Well, if you haven’t heard already, Sierra Sandison is pretty freakin awesome!
About a week or so later, I received the following texts from my sister in law.
I just wanted to take this time to say thank you to Sierra again. Little things like this go a long way in how a young kid handles their diabetes management. My niece is so excited to show people her pump and her CGM. She willingly tells and shows people about it. I am proud of my niece for how she is handling it and once again thank you so much to Sierra. I know for a fact my brother and sister-in-law are even more thankful for this wonderful outreach.
Amanda and I have always been fans of local farmer’s markets. For me, I love the fresh food and small businesses that are out there hustling. I am a huge fan of homemade items that are usually sold at farmer’s markets, such as pickles, jellies, pepper jellies, baked goods, fresh veggies, etc.
Our local farmer’s market is located right next to the intracoastal waterway so it is a beautiful site as well. We had not been there in a while, so we decided to check it out and see if there were any new vendors. There were some new ones there and I knew it was going to be time for a BG check and some insulin because I saw some great free samples.
That leads me into what I wanted to talk about. During this time, I was taking an insulin pump vacation for the weekend and was just using a syringe and vial. Walking around eating free samples and not knowing exactly what I am going to be eating never worked out well for me when I was on MDI. When I am pumping, it is not a big deal because every time I decide to eat something, I just bolus for it with the pump and that’s that.
When I am on MDI, my strategy is a bit different. And in the comments below, or on Facebook, I would love to hear your feedback and your comments on how you handle situations like this.
In a situation like this where I am eating random items that are free samples, they typically are not large enough that I need to worry about a bolus. If I eat 3-4 free samples from different vendors and I feel like it was a significant amount of carbs, then I will simply stop and take a shot. If I know that I am going to eat something that is not a free sample, but an actual item (New England Clam Chowda at this farmer’s market is amazing!) then I will bolus directly for that.
The other issue is that depending on what you are eating (sweet pickles, pepper jelly) it is difficult to guestimate how many carbs are in a specific food. I honestly do not get mad if the vendor does not have that information. I just ask what they put in it and I do my best to guestimate. If I am wrong, then I correct, simple as that.
Usually after the amount of walking that we do at the farmer’s markets we go to (at least 2 miles altogether) the exercise helps burn off some of the food that I ate and helps balance out the blood sugar. Please note, I am not saying exercise is going to lower my blood sugar and I don’t need insulin, so diabetes trolls, stop right there.
Like I said above, I’m curious as to how MDI-ers handle situations like this? Would love to hear your feedback.
The process of packing up and heading out for the day has definitely changed not only after my diagnosis in 2004, but even more now with a 1-year old (actually, just a few days shy of one). I have come to perfect the “leaving for the day” thing, except sometimes, I forget my diabetes bag.
Several years ago, while at a K-Mart in Pennsylvania, my wife found a Philadelphia Eagles pencil case and she bought it and then said to me, “I figured you could use this for your supplies in my purse.” I still use that case every single day of my life.
I found that there wasn’t a single glucose meter case from any of the companies that fit exactly what I needed. Here is what I keep in that bag:
This bag is usually kept in my wife’s purse, or now, the diaper bag.
I try to always have this bag stocked with items because when we have to leave for the day, we are both concerned about making sure we have enough diapers, wipes, food for the kid, extra outfit, etc. You know, all the crap a kid needs throughout the day.
There have been many times that I have forgotten the “Eagles Bag” at home and had to come back home to get it, or just hope that my current infusion set didn’t rip out or leak. So, my wife and I have devised a plan to make sure that never happens.
First, we give each other a 15 minute warning for when we are going to be ready to leave. Typically, whoever is the one that is getting showered, dressed, etc last will give that warning.
Next, my wife gets started preparing the diaper bag for the long day, or short trip, whichever. If my wife is the one getting ready, then I will get the diaper bag ready….. meaning, I ask her one by one what needs to go in it.
Once the diaper bag is ready, I then go and grab my Eagles Bag and ensure that it has everything in it that I need. I then put it in the diaper bag. The diaper bag is then put on the couch near the door so that when I am leaving and setting the alarm, I don’t forget the diaper bag.
I’ve forgotten the diaper bag in the past. I was told by my wife that I forgot the diaper bag. I have never again forgot the diaper bag.
After 12 years with diabetes (April 3 will be 12) and one year with a kid, we have finally gotten this traveling out for the day thing down…. so far.
I don’t think that people truly understand everything that goes into the daily life of someone living with diabetes. Things just as simple as getting in the car to drive to Target or visit family requires planning and prepping and making sure that you don’t forget crucial, life saving supplies.
Last night’s #DSMA Twitter chat was based around a cure. Do we think one will happen, what will it cost, when will it happen, what will a cure be, etc. These are all questions I think that many of us have asked ourselves or discussed with others at one point in our diabetes lives. Last night was the first time that I discussed it in a very long time. So, I decided to talk about it just a bit more here.
These are my honest opinions, love em or hate em, we are all entitled to those opinions.
Also, my language is a bit NSFW.
For me to see? No. For my 6 year old niece to see? Probably not. Do I “hope” that there will be one? Abso-fucking-lutely. But, as I said last night during the chat, there is a huge difference between a hope and a belief. I definitely hope that a cure happens. Do I have hope in it? No. Do I believe? No.
The number one reason why I don’t think it will occur is basic economics. There is way too much money being made in the pharma industry for a cure to happen. I’ve heard people say that the economics isn’t the issue and that companies will still make money, but that’s all “future speak” meaning, we don’t know shit about what will happen if there is a cure. Projections are cool, but results are fucking awesome!
Also, I currently do not believe there is enough funding going into an actual cure. I think that the people and organizations that are doing it are great. Whether you like the Diabetes Research Institute or not because of some marketing mishaps they had in the past, they are still doing some excellent work. But, at the same time, I don’t really care to stay up to date with this cure talk anymore because I don’t care about breakthroughs are progress being made. I simply want results.
I am more focused on research and development that is going on within the technology industry that is going to help make my life with diabetes easier. That’s what I care about.
That’s simple to me. A cure means the disease does not fucking exist! It doesn’t mean I still have to check my blood sugar, and have check ups. It means it doesn’t exist! Anything less than that is not a cure. Once again, it is progress towards a cure.
If you want exact numbers, you can go do your own research, but I’m not going to look up the finances for big pharma to get exact numbers, but here’s the theory with a basic number. Let’s say the profits from diabetes are currently $1 billion per year. That means that the cure would have to make $1 billion per year for big pharma. So, whatever that number is, there’s your answer of the cost. I know it would be a lot.
Mike Hoskins had said last night:
Truly, I do believe we will see a Zombie Apocalypse before we’ll see a cure for diabetes. #dsma
— Mike Hoskins (@MHoskins2179) February 18, 2016
Here is the bottom line for me. I think that the cure, unfortunately, is a false hope. At least for my generation. It’s like holding out for Prince Charming when Mr. Right is standing right there in front of you. Meaning, IMO, why set my eyes on a cure, when I can set my eyes on better technology to make the disease even easier to manage?
I’m not telling you to give up hope for a cure. Because if you have gotten that out of this post, then re-read it, because that’s not what I’m saying. I’m also, by no means, saying that I don’t want a cure and that I think people should stop funding it. Definitely not saying that.
Would love to hear your thoughts. Comment below or on Facebook
A few weeks ago I received an email (which I receive a lot of them with pitches about diabetes), but this one I found a little bit more interesting, so decided to give it a second read. The email was about a crowdfunding opportunity for the Peter Sheehan Diabetes Care Foundation. The mission of PSDCF is to:
Improve T2D care and prevention for at-risk communities, provide education to prevent the onset of T2D and its complications, and organize forums enabling an exchange of scientific ideas to further the understanding of T2D.
I am all for any one that is trying to spread awareness and education for diabetes.
You can check out their crowdfunding page here – https://www.youcaring.com/peter-sheehan-diabetes-care-foundation-503231
You can also watch their YouTube video below:
Check out the video below and then head on over to the Spare a Rose, Save a Child site.