As you may remember, I went about 18 months without insurance. During that time I had to buy strips and insulin out of pocket and I also received a lot of items from people throughout the DOC because of how awesome everyone is. One thing that I didn’t have to deal with during that time was insurance companies and mail order pharmacies.
Since I getting insurance back after getting married in July, I’ve been dealing with OptumRX as the mail order pharmacy and it has been nothing but a nightmare. I really hate having to complain about companies on the blog, because I want to keep things positive and not just reflect on the negatives, but some times, you hit a boiling point and something needs to be said.
In just over 6 months of dealing with OptumRX I have had the wrong type on insulin shipped, the correct insulin shipped, but the wrong amount, having to change my password everytime I login online, prescription refills not being listed on the website so I have to call and wait on hold, 3 faxes from doctor before they finally “received” it, and now… this.
Yes, that is how my test strip order was received. This is the order that took almost 3 weeks because they were not receiving the fax from my doctor. I did run out of strips and was using some leftover Contour strips that I had during this time period, which is primarily my fault for thinking that I could get more strips within 1-2 weeks. I was excited to get my first order of the Verio strips so I can continue to use the meter after I only had 10 trial strips to begin with.
This isn’t just a full blown bash against OptumRX. I did call them right away and after speaking with 4 different people, they told me that they would send me replacement boxes with a return label to return the damage ones. I was told, “we will just ship them regular mail because some of the boxes weren’t damaged.” Even though that statement is correct, I don’t know if it’s just me, but when you screw something up because of poor packaging, I shouldn’t have to wait another week to get it back.
All in all I can’t stand having to pick up the phone to call OptumRX for something.
You may have been seeing around the blogosphere that from Feb 1 – Feb 14, the Spare a Rose campaign is in full effect. Now, I am not going to spend a lot of time on my blog writing about this, because most of the readers of this blog already know about this awesome idea. My goal has been trying to reach those offline and finding ways to connect with people who do not read my blog, follow on Twitter, etc. I know that this is the goal of just about everyone else who is promoting the campaign.
For those that don’t know about Spare a Rose, let me tell you why it’s important to me.
I am one who does not get emotional very often, but when it comes to seeing images of little kids who are struggling to live because they don’t have the simple necessities to live, like insulin, it just breaks my heart. We all get upset and blast on Twitter about the latest and greatest technology that wasn’t covered by our insurances, yet, we at least have our insulin to keep us alive to make those complaints. This all comes into perspective when you watch the Life for a Child video and realize that these kids don’t even have the insulin it takes to live, let alone the CGM that doesn’t communicate with your iPhone.
Now, just a little more information about Spare a Rose.
The concept is very simple. Instead of buying a full dozen of roses, leave off the cost of one rose and donate that amount of money towards providing insulin for a month for a child. Donate the cost of a full dozen and you can provide insulin for up to a year for one child and help keep a child alive for another year.
Now, do me a favor, even if you can’t donate any money, please spread the word. Tell people in your office, family, friends, ask doctors to post the info, teachers, etc.
I know that I am a little late to posting my thoughts and views from the Medtronic Diabetes Advocate Forum, but better late than never. There has been a lot of great posts and follow-ups out there to read to keep you busy. The first topic that I wanted to touch base on was the usage of the phrase artificial pancreas and some of the backlash that Medtronic received when using that phrase for the 530G Enlite System.
When it comes to naming of things, marketing, etc. I am not too concerned with a name that is used. I completely understand the backlash however, because of the false hope that it gives to people who hear or see the name Artificial Pancreas. On the other hand, I am a firm believer that it is your own personal responsibility to understand the tools that you are using to manage your diabetes and to do your research. One look at the 530G system and you would know that it’s not a true, fully closed loop artificial pancreas, but it’s a system that is helping to get closer to the end goal.
What was nice to hear was that Medtronic admitted to the mistake and also understood the backlash and made the comment that they would put more time into naming their systems. VP of regulatory compliance, Mark McDonnell said “we’ve heard you about the term artificial pancreas”
I know that I was not alone when I say, “I don’t care what you call it, make it work and make it accurate”
I would much rather the extra time that is spent on the naming of the product to be spent on testing the accuracy.
Now, enough with the naming part of the 530G, and I encourage the debate, because I agree that the naming could be better, but also am not too upset about it.
One of the features that the 530G system utilizes to get it closer to being an artificial pancreas, is the low glucose suspend, which will suspend the pump when your blood sugar is approaching your low level that you have set up with your doctor. This feature is great for those that go low in the middle of the night, but may not feel that they are low or do not hear the CGM beeping, vibrating or whatever other song and dance it does when you’re going low.
As somebody that doesn’t go low too often in the middle of the night, and when I do, I have had the benefit of recognizing it and being able to wake up and correct, the low suspend is not as important to me as a high glucose insulin delivery feature would be. That is how to come closer to closing the loop and being an artificial pancreas. Catch the spike in a BG and dose insulin as needed, but I know there are a lot of dangerous “what if’s” that come into play here, but that is where the R&D will help.
I cannot remember which Medtronic employee said this, but the comparison to a fully closed loop system and an airplane was made by saying, “Full closed loop system is like an airplane on auto pilot..there’s still a pilot there to make decisions and provide input”
The bottom line of all this discussion on the 530G and it being named an Artificial Pancreas is this. Let’s get the product where it needs to be, make it work, make it accurate, make it accessible, educate the end users and the HCP’s, and then less worry about what we should call the wonderful technology.
This past weekend I had the opportunity to attend the Medtronic Diabetes Advocate Forum. I have been to a couple other industry / pharmacy events in the past, but this was my first Medtronic event. My initial thought when I was invited to this is that it was called an Advocate forum and not a social media summit or meetup which led me to believe that there was going to be more than just social related topics, which is what I was hoping for. Luckily, there was a mix of on and off line action items.
I used the phrase action items because that’s exactly what came out of this entire trip. I walked away with a pretty lengthy to do list as opposed to a long “I want to do” list. This community is strong and helps each other out, so I’m sure I’m not just speaking for myself but there will be plenty of calls for help from those that attended.
There were a lot of items discussed over a short period of time and I want to provide as much info on each of those topics as I can, so I will be breaking down each area of interest into its own posts. I feel that as an invited attended, it is my responsibility to provide you with as much information as possible for those that were not able to attend. The topics of a few upcoming posts will be on :
- Artificial Pancreas – Naming, closing the loop, system, moving forward
- Spare a Rose
- Strip Safely
- Regulatory and Policy Changes
- Customer service, feedback, making changes
- Redundancy Sensors
- And more..
My overall feeling at the end of this forum was that I thought it was fulfilling. I had a discussion with Bennet as we were printing out boarding passes and mentioned that out of the several of these events that I have attended, this is the first time that I am leaving with an actual agenda and action items and not thinking, “I hope we follow through on some of these things” and more of a feeling that we already have action items to handle from this meeting.
As I mentioned, this post is more of a brief outline of the posts to come because I feel that there is enough material discussed to go into more detail about the items listed above.
If you have any questions, please leave a comment and I will get a Medtronic answer for you if I can’t answer myself.
World Diabetes Day 2013 is something that I will always remember. I planned on being a part of as many of the 24 topics for the World Diabetes Day Chat as possible. With so many different topics and moderators and participants, I knew that there was going to be so much information to learn and new perspectives to be seen. To say I was super excited was an understatement.
It all started at midnight on the 14th, when it all began. There were a lot of familiar faces, but there were also a lot of people that I haven’t seen tweets from or had ever seen participating in chats. I knew I was going to need a lot of coffee if I was going to make it until 3 .am. like I wanted to. I didn’t make it to 3 a.m., but 2:15-ish was close enough for me. It was time to get some sleep and be refreshed for the long day ahead.
Luckily, I work from home, so I was able to participate as much as I was able to during the day. There were some great topics and I found that answers and responses from one topic would bleed into another one, which led to a lot of common thoughts among the participants. I also found a lot more new people to follow on Twitter.
All in all, after a long 24 hours, the day was a success. I received several spam tweets which means that the hashtag was getting some traction. That’s all that we can ask for, that the conversation fell upon ears that may have not known exactly what was going on.
How did you spend your World Diabetes Day? Did you participate in the chat and/or what else did you do?
I was approached a couple of months ago to start a trial for the Asante SNAP Insulin Pump. As you may recall, I have stopped using my Medtronic pump about 6 months ago and have been on MDI. This will be my first time pumping since May. I chose to wait until now to do the trial because I knew that I had my honeymoon approaching and I didn’t want to be on a trial insulin pump in another country.
In order to get started, I have to regroup and figure out all of my old pump settings as a starting point. This is going to be a great test for the pump, because I will need to be testing my basal rates and carb ratios and sensitivity levels because I know they have changed from 6 months ago when I stopped pumping.
Wishing myself a happy pumping experience.
I’m approaching my 10 year diaversary (not until April 2014), but it’s close enough for me to consider it approaching. I wanted to take some time for myself to reflect back on where I was in my life 10 years ago. And, if you did the math properly, you will notice that I didn’t have diabetes 10 years ago.
10 years ago, I was in college playing football at King’s College in Wilkes-Barre, PA. The season was winding down with only a few games left and I was really looking forward to the season being over and getting a break from football. I seemed to be getting worn down and just didn’t have the same amount of energy that I previously had and I just wanted to get home for Thanksgiving break.
I don’t recall having any of the symptoms of diabetes at this time, I just remember that I was feeling burnt out from the effects of a long football season. I didn’t start feeling any symptoms until about January – February. Once I came back from Winter break in January, I still felt sluggish going to the gym everyday and getting into our off-season workouts. I started to believe that my years of football were done, that I just didn’t want to put in the hard hours of the off-season anymore.
It wasn’t until spring break in early March that I decided that I just had enough. I couldn’t lift as much in the weight room, I couldn’t run as long during workouts and my arm would be tired after a 30 minute throwing session, so I wanted to have spring break to discuss with my parents about quitting football. I had never once thought about quitting football. Even when I had a full ride to Maryland and Rutgers thrown away because of an ACL injury in high school, I swallowed my pride and went to a D3 school. But, this time I could not take anymore of the off-season workouts.
While I was at home during that spring break, I remember going to breakfast with my mom and eating french toast with regular syrup and feeling like I was swallowing thorns because of how dry my mouth was after eating and going to the bathroom every 15-20 minutes while I was home and going out with my friends.
It wasn’t until a month after that I was on my way to the emergency with the 858 blood sugar diagnosis.
And then the life with diabetes began.
I have expressed my disgust in the past about my local JDRF chapter. I used to have a great relationship with them in the past. They would allow me to attend events that cost money, they would send me personal emails about events that they had upcoming and things were great. Here’s the kicker, I worked for a local diabetes supply company at the time who was donating money for different walks and events.
After not being at the company, the relationship began to dissolve. I was no longer receiving as many emails or invites to things. I was denied to speak about the DOC and hand out Diabetes Advocates information. Heck, I wasn’t even allowed to get votes from them for my Diabetes Heroes video. Yet, they were constantly requesting money and things from me with their newsletters.
I have always loved JDRF because I love the things they are doing. I love giving back to the kids and giving kids hope is great, so I always enjoyed attending JDRF events that were focused on kids. I give them credit for attempting some sort of adult functions, but they occur once in a blue moon and the ones that are more frequent are like $50 tickets per person to get in. Which means, that I will be attending with my wife and we will need to drop $100 every time we want to go to a JDRF function. I’m sorry, but I’m not loaded with that kind of money. Let’s also not forget that CSI Marketing Solutions (company I own) has donated plenty of money to them over the last 3 years, but that doesn’t matter come ticket time.
I see that somebody who previously lived in my area, now lives elsewhere (I’m not naming names, because I don’t know if they want names to be named), and they are having a completely different experience with their local JDRF. This tells me that it’s not JDRF who has the problem, it’s my local chapter. But, I don’t know how far up the chain it goes. Some of the day to day people in the chapter have always been great to me, but the directors seem to be the ones that put the hammer down on any sort of ideas that I’ve had in the past.
I am almost to the point that I want to begin supporting the local JDRF chapter in Pennsylvania where I am originally from.
How many others have frustrations like mine with their local JDRF chapter?
Over the last few months that I have been off my insulin pump, I have really enjoyed it. My A1C came down a few decimal points and I see fewer high blood sugars. One negative that I have seen though is the amount of fat around my lower belly has increased, a lot. I take 90% of my shots in my stomach. Since I use so much insulin, it’s easier to take the shots there than in my arms or legs. Plus, I usually take insulin at the same time that I’m eating, so in my legs takes too long and I end up with spikes after eating. I have definitely seem the increase in the amount of fat in the injection areas though. And that, I don’t like.
I’ve been trying to take smaller doses of insulin since I read an article that Scott Johnson posted a couple of weeks ago. Sorry, I don’t have the link, but if you have it, please add it. This means that I can take my full amount of insulin, but take half in my left arm and half in my right arm and then there’s not as much sting or pain because of the large amount of insulin being injected there.
I’ve been losing weight overall and have been really trying to do some ab exercises to get rid of this extra belly fat, but as of now, nothing has been working. But, just like anything in life, I will continue to work hard at it and not give up.
Whether you are on MDI or wear a pump in your stomach area, have you found this to be the case?
Let me first say, that I am not talking about the honeymoon period when you are first diagnosed with diabetes. I am talking about the honeymoon that I just came back from last week and having diabetes. My honeymoon consisted of a cruise to the Bahamas, as well as a stop in Key West. I have been cruising before with diabetes, so I wasn’t too concerned about the supplies issue. The last time that I cruised with diabetes, I was using an insulin pump, but this time, it’s all syringes and vials.
For anyone that has ever been on a cruise, you know the first thing that you do as soon as you get on the boat is sprint to the lunch buffet and start the weight gain process as soon as possible. That’s what I did. I was feeling a bit low from the process of checking in, walking through the lines to get on the boat, and carrying two bags with me, so I knew that eating first was the right choice. I went to the restroom to take a shot in-between plate one and plate two.
We were planning on taking the day trip to Atlantis in the Bahamas and doing the watermark and pools there. We did this several years ago when I was on the pump, and I had to disconnect and connect every time that I wanted to go into the rapids river (their version of a not so lazy river). This time around, it was so much easier. Just go in and out whenever I felt like it with no worries about disconnecting at all.
All the diabetes supplies were in the locker that we rented and I only went back to the locker about once every hour in order to test and grab anything else that we may have needed.
The second day of the cruise included a day at the private island of Coco Cay. This place was truly tropical paradise. Quick side note. One of Amanda and myself’s favorite combined movie is Couple Retreat. We watch it every chance we get. So, this honeymoon had nonstop references to Couples Retreat. Coco Cay felt like Eden West and East, depending on which side of the island you were on.
Back to the story.
While we were there, we decided to get our first couples massage, once again from Couples Retreat. As crazy as this may sound, I’ve never had a massage before, so I had no idea what to expect. I was concerned that I was going to go low in the middle of the massage and would have to stop the therapist in order to eat some candy. So, to prepare for this, I had a little snack before I went into the massage. My blood sugar was around 200, but I was fine with that because I didn’t want to stop the massage because of a low. I did alert the therapist however that I was diabetic and that in the case of a low blood sugar, I would need to drink some juice or eat candy.
No lows, just a bit of snoring because I fell asleep in the middle of the massage. The rest of the day was a bit of the same. Food, sunshine and paradise.
By the time we were on night 3 and after all the testing that I had done, I said to Amanda, “we need to cruise more often because other than one bad high after breakfast today, my blood sugars have been nearly perfect”
Who would have thought? On vacation, a honeymoon at that, breakfast, lunch and dinner buffets, and alcohol and my blood sugars would be better than when exercising, dieting and counting carbs. I will admit, I went through more insulin than I normally would, but who cares how much insulin I have to use if every time I test, I’m showing a number under 160.
Finally, we spent the day in Key West. We have been there several times, so we decided to not spend money on lunch there and just eat the lunch buffet one last time. BAM. Great blood sugar after that also.
On the last night, I ran into our room attendant, who I swear was in the hallway to greet me every time I opened the door, it was kinda scary, but well appreciated. I keep my diabetes stuff hidden in the room because they tend to make a big deal about it on a cruise ship. I have my own sharps container, so that’s why I didn’t alert them about it. However, I left a syringe out when we left the boat to go to Key West and he saw it when he came to the clean the room. He didn’t ask what it was for, but just asked if I needed a container to put it in for safety reasons and I let him know that I had my own container and we were all good.
That was the last of that.
As I was walking off the boat on the last day, not only sad that the trip was over, but I thought to myself, that my diabetes didn’t effect me in one single way this trip. I didn’t really have any lows, only 1 bad high after those amazing pancakes and french toast, and it’s just another reason why I am lucky to have the technology and equipment we have today to manage our diabetes.
Honeymoon is over and life is just beginning!