As you all know, there is a lot of stuff we have to live and deal with on a daily basis living with diabetes. Before I was diagnosed with diabetes I had fears that I had not been able to overcome at that point. After diagnosis, I began to deal with a lot more fears. After taking an injection from a syringe the other day, I realized, damn I have overcame a lot and began thinking about some of the biggest fears or challenges that I have overcame since being diagnosed with diabetes.
Seriously, who isn’t afraid needles? Before diabetes, I couldn’t stand to take a shot. I actually remember when I was 18 and had to get some shots before heading off to play football in college, I almost cried at the doctors office. I just couldn’t take the pain of some other person stabbing me with a sharp object and injecting me with who knows what.
Well, obviously I have gotten over that little fear. And it really didn’t take me too long either. After the first or second injection I realized that I didn’t really have a choice. Either learn to give yourself a shot and deal with it, or you’re not going to live. That was a pretty easy decision.
Owning a Business
For a long time I was always told that it is difficult for someone with diabetes to own their own business because of the health insurance issue. Sure, if you have enough employees you can get company insurance or just live off of your wife’s health insurance plan. Well, at the time that I decided to start my business, I was not married, so that wasn’t a choice. Also, I knew my business would start out as a freelance style business before I was able to grow it to include employees (if I ever wanted to have full time employees).
So, the fear of going out on my own and not knowing if I would have enough money to pay for my medical expenses was growing in my head. But what would I rather do? Go to work everyday miserable just so I had a paycheck every two weeks and health insurance or take the chance and go work for myself and do what I always wanted to know and have the risk of not being able to afford insurance?
It caused many sleepless nights, but I chose the second option. I then spent a lot of time second guessing myself because unfortunately, I lost my COBRA health insurance just a few months after leaving the company I was working for and was living without insurance and paying cash for everything (and receiving a lot of help from the DOC). But, I overcame that fear and am still living that dream of owning and running my own company.
Getting Blood Drawn
Ok, so this one I am not 100% over yet, but I am able to do it as needed. I still cannot look in the direction of the arm where the blood is being drawn from, but I have no hesitation in getting the blood drawn. When I was first diagnosed my grandmother worked in the hospital and she drew blood for over 30 years, so when I needed bloodwork done, she was the only one that I would let do it. 1 year after diagnosis she actually retired and came in and drew my blood when I had to get it done.
When I moved to south Florida to finish school, I would only get bloodwork done up in PA when I would visit by my grandfather. Unfortunately, I live full time in south Florida now and have to get my bloodwork done down here by random people at Lab Corp.
So, technically, I have overcame half of the fear, but I’m not sure that I will ever overcome the other fear.
Growing up, I was never really a shy person, but I did not just vent my life stories to anybody, not even really my closest friends. I was never great at sharing personal things that may have upset me or made me mad, but I was very outgoing. As you can obviously tell by this blog, I have overcame that fear of letting other people get to know me and letting out some of my fears and sad moments of my life.
I still have some more work to do when it comes to face to face communication with people, but I am getting better. Diabetes has allowed me the opportunity to connect with a lot more people from the DOC than if I wasn’t ever diagnosed. Sharing my life’s journey is part of my life now and communicating with people I’ve never met has become a reality.
What specific fears have you overcome since being diagnosed with diabetes?
It’s been a couple of weeks since I’ve attended AADE 2014 in Orlando, but there is still plenty that I wanted to write about. You may have heard (or read I guess) from others about the session that involved some of the DOC’s own. The session titled, “The DOC Rx: The Role of Social Media in Managing Type 1 & 2 Diabetes” included Jennifer Block, Jill Weissberg-Benchell, Kerri Sparling, Bennet Dunlap and was moderated by Jeff Hitchcock who was a last minute fill-in for Manny Hernandez who could not make the trip.
I was super excited about this session for a long time because any time the DOC can connect with educators is an opportunity to share the amazing benefits of the DOC. As I talked about in my last post, there always seems to be some sort of hesitance from educators, and other healthcare professionals about being involved in social media. Primarily because of HIPAA, there are issues that keep educators offline and also keep from referring their patients to the internet.
As we know, just because you read it on the internet means it must be true (that is sarcasm, relax).
The session was opened up by Jeff Hitchcock which included a short introduction of the panel and some information about Friends for Life and CWD and then led to questions asked to the panel. One of the first questions posed was to Kerri about what the most challenging and emotional aspects of living with diabetes is. Summarizing Kerri’s response, there is no reward for doing all of the right stuff, therefore burnout can come from doing these things every single day. An answer like this is seen a lot from people in the DOC especially during DSMA, and if educators were just trolling at least, it could help them better understand the emotional impact of diabetes when their patients come visit them during their 1-2 trips to the office a year.
I personally felt that Dr. Jen Block being on the panel was the best part of the entire session. She is not only a person living with type 1 diabetes, but also a CDE who sees patients. She mentioned several times that she uses the DOC all the time in her practice and that educators as a whole need to expand their vision of the DOC because it is an incredible resource. This point was one of the best made. There is such a defense mechanism up from the HCP community about online information and their patients taking advice from people and then the HCP being held responsible for being the one referring them to the DOC.
The discussion must be made with the HCP and the patient. The discussion must be clear. Do not change any regimes, medications, or any other doctor’s orders without consulting with a physician. Dr. Jen Block made reference to an infamous blog post from Kerri about putting her Dexcom in a glass overnight in order to better hear the alerts from the Dexcom. This is a great tip from the DOC that an educator may never know of and wouldn’t be able to recommend to their patients unless they were involved with reading posts from the DOC.
Questions from the Floor
Once the room was opened up for discussion a question about the number of face to face support groups seems to be getting smaller and smaller and the educator was curious if the DOC was interfering and partly responsible for this. Dr. Block responded that there is room for both. I have personally gone to face to face support groups and they just aren’t for me. Some people may prefer the face to face meeting time, but that poses a problem in itself, the time. The convenience of the DOC to be able to do things on your own time is one of the reasons why face to face support groups may be drawing fewer numbers. It is definitely not the only reason, but is a viable one.
Jeff Hitchcock added to the answer that the DOC provides for an opportunity for real time support. You have a problem or a question right now, you ask it on Twitter or Facebook and you have 10 answers before you an even pick up the phone to leave a message for your educator. The DOC also allows the opportunity to meet face to face as well. I have met more people from the DOC face to face then I have in going to local meet ups organized by a local diabetes organization or my educator’s office.
Have you figured out by now that I am a huge fan of Jen Block? She had mentioned that she uses the discussions and questions from the DOC and turns them into answers for her patients as a CDE. How awesome is that? Taking issues that are brought up in the DOC and then proactively discussing them with their patients can make a patient feel great because they may have concerns that they are embarrassed to bring up or just forgot to ask during their appointment.
Finally, an educator came to the mic and asked about type 2 blogs and resources because it seems that all the discussions were based on type 1. If you have made it this far down into the post, please comment below with any and all type 2 diabetes blogs and resources you know of.
To wrap up the session which seemed to go by way to fast, Bennet and Kerri shared some great information about the Spare a Rose campaign and CGM in the Cloud #wearenotwaiting.
I will be writing one more post about the AADE which is just a summary of links to a lot of big announcements from the industry.
I had the honor of attending the AADE Conference in Orlando, FL. I drove up from the West Palm Beach area Wednesday morning to attend the session titled Social Media-Technology Tools for Online Communication that included Cherise Shockley, creator of DSMA and pure awesomeness!
Unfortunately, due to a bit of traffic in the Orlando area, I entered the discussion about 15-20 late and showed up to a pretty packed room. My very first thought was, “Awesome, there are a lot of educators that are interested in social media.” That gave me a chill down the back of my spine from the very beginning. Just by attending this session, these educators are taking a step towards either beginning or improving the way they practice and deal with patients in the world we live in today.
The session included a lot of how-to’s for Facebook and Twitter. In fact, in the later part of the session, Cherise provided a step by step (click here, click there, type this) walkthrough of going to Twitter.com and creating your Twitter account. She also walked through the steps of following a group of people, how to search for people to follow and then sent out her first tweet (with that account).
There were questions from the attendees about whether or not to create a personal Facebook / Twitter profile or a professional one, do they use their name or a persona, do they allow patients to follow / friend their personal account, etc. These are all very valid concerns, especially when HIPAA becomes involved (which, seriously, it’s 2014, let’s live like it’s 2014 and not 2004).
The best advice was, “Do what you feel comfortable doing.”
I second that response and think that is the best advice for not just diabetes educators, but anybody that is creating a social media account. Don’t just do it because everyone else is doing it. Don’t just over-share on social networks because everyone else is.
Do what you are comfortable doing!
There was another response from an attendee that I wasn’t able to get the name or social handle for (word of advice, when introducing yourself at conference from now, give your name and Twitter handle), but she said, “Don’t be in your diabetes educator role online.” Meaning, just be a person. Be someone who is listening, who can talk, who can comfort, who is not just someone looking at a data point, but providing real support where and when it’s needed.
Social Media Tools
There were several tools that were mentioned to help you manage your social media accounts, but the main one discussed was HootSuite, which I am a paid user of and absolutely LOVE it. I manage over 40 social media accounts between clients and personal and without HootSuite, I don’t know where I would be. It was recommended to not use the paid version, which is fine if you only have 1-2 accounts that you are managing and I totally agree with that. However, for more advanced users, those that want data and analytics, I would highly recommend the $9.99/mo Pro Version of HootSuite.
There was a little part of the discussion that was used to talk about LinkedIn and creating a profile there for networking. I could go on a lot longer here just about LinkedIn, but I will save that for another day (or maybe another blog). The social media agency side of me feels there is a lot more that can be done with LinkedIn that most don’t realize.
Social Media Advocacy
Other examples of the power of social media that were discussed was Strip Safely, which at first, Bennet Dunlap did not have much to say, but with a little Twitter encouragement, he decided he would put in a few words and share some information about the Strip Safely campaign to Support CDE’s.
One announcement that was made during the session that is important is the new date set for DSMA for Parents with Kids with Type One, which is September 8, 2014. Put it on your calendars now.
Social Media Time Management
Another area of concern that seem to be in the room was the time management side of using social media. Listen, as somebody who owns a digital marketing agency and manages social media accounts for multiple businesses, this is the number one excuse I hear, “I just don’t have time to do it.” There is just so many tweets and I don’t know where to start, and many more phrases. I get it. I can spend 10 hours a day on social media some days, but realistically, we can’t do that. But I am willing to bet, we can all find 20-30 minutes in our day to visit a social media site. And if you can’t….. then don’t! Once again, that goes back to doing what you are comfortable doing.
Hashtags are probably one of the best ways to help you manage your time on Twitter. If you want to just focus on reviewing tweets from people that maybe are having issues with high / low blood sugars, then the #bgnow hashtag may be great for you. If you are looking for people who use a Dexcom because you have a patient later today that you know will have some questions about their CGM, then you can use the hashtag #dexcom. Twitter Search is one of the most important tools in all of social media.
My biggest word of advice is to not stop using Twitter, Facebook, LinkedIn or any other social platform because you don’t understand it. If you allow yourself to learn, you will. The more you use it, the easier it becomes. And don’t hesitate to reach out to somebody who does know what is going on.
This was not the end of the discussion of social media and diabetes education. There was another session later in the conference that included a few of our own DOC members.
That session deserves its own post.
I will be in Orlando for the next few days live tweeting and taking notes from AADE. Check back next week for multiple posts from AADE
I have put on a lot of weight over the last 4-5 years. Like a lot of weight, nearly 60 pounds. I’ve come to the point that I’m just disgusting with myself half the time. I live in Florida and don’t go to the beach or pool because I can’t stand to take my shirt off. And no it has nothing to do with showing my infusion set. It took me a long time to admit that I am grossed out about my body when I look in the mirror.
I grew up an athlete, quarterback in college and was in great shape and fit body. My 30th birthday is approaching and one of my best friends from elementary school is getting married the day before my birthday, so I decided on a new goal.
30 by 30 in 90.
What does 30 by 30 in 90 mean? I’m going to lose 30 pounds by my 30th birthday in 90 days.
That comes out to about 2.5 pounds a week. That’s not really a lot for someone like me who is just so over weight and such an unhealthy eater. I drink about a 2 litre of soda a day….and maybe a bottle of water a day. So, just by switching those two items around I can lose majority of this weight.
I am a late night worker, so I usually eat around 10-11 P.M. Eliminating that will also help me lose majority of this weight.
The goal is straight forward and the plan is simple.
It all comes down to the execution of the plan, but isn’t that what everything comes down to?
I will be sharing more frequent updates on Twitter.
I have been wanting to attend the AADE conference for about 5-6 years now and I just haven’t been able to attend. This will be my first major conference that I will be attending as “Media” When I attended Scientific Sessions and Friends for Life (once a piece) it was as a vendor for a company that I used to work for.
One of the many reasons that I started my own company was so that I would have the freedom to attend these conferences and not have to worry about having the time off of work. Unfortunately, during that same time period and building a business, I haven’t had the financial freedom to attend these conferences.
Since AADE is in Orlando, I am just a quick 2.5 hour drive away and don’t need to worry about a round trip airline ticket which saves me a lot of money, however, the hotel is still an extra $300-400 that needs to be budgeted for. I decided last year that I will be attending this year’s AADE and I just kept putting a little money aside every month in order to know that I would be able to attend.
I highly recommend this to anybody that has interest in attending diabetes conferences.
Who all is going to AADE? I’d love to meet up with as many of you that I can. Orlando is basically my home, away from home (away from home, since I technically still consider PA my home), so if you need any tips for places to eat at or see, let me know.
My saga with OptumRX is over, at least for this go round. As my previous post mentioned, I’ve had a very difficult time getting my insulin re-order. As an update to the previous post, I have received all the insulin that is needed.
I ran out of insulin and needed to go Target in order to fill my retail prescription because the mail order did not ship in time. I decided I would pay the $100 deductible because I needed the insulin, however when I went to pick it up, they couldn’t process the order because it said I just had the mail order filled.
If you’re getting confused, sorry, but this is how it went down. The pharmacist had to call in for an override which took another 15 minutes.
Finally, I had my insulin from Target which is a one month supply, now I just needed my 90 day supply delivered.
I did not get the delivery the next day, so I called and the RX was still being processed which I don’t understand how it takes that long when I had a RX on file, but just ran out of refills. And why does insulin need refill limits anyway, it’s not like I’m going to stop using it any time soon, but that’s a different story for a different time.
I received my delivery of insulin yesterday so I am good to go for insulin for the next 4 months. Which means hopefully I won’t have to deal with Optum for another 4 months.
Over the last 12 months I have had a mail order get delivered to wrong address, test strip order be delivered with half of the 3 month supply damaged and the test strips on the bottom of the bag, this fiasco, Humulin N delivered instead of Humalog.
And that has all been with OptumRX. To say that they are probably the worst mail order pharmacy is an easy choice.
As I’ve mentioned, I have been spending the last month up here in Pennsylvania. I initially thought that I could wait until I got back to Florida to order my insulin, but that didn’t work out. So on Thursday evening I called to re order my insulin….but there were not any refills left.
Well here is the first issue. After my last visit to the endo they faxed prescriptions for test strips and insulin, so how is there 2 strip refills left but no insulin? That didnt make any sense to me but no worries let’s move on.
It was late on Thursday so my doc office was closed so I had to wait until Friday morning to get the renewed RX sent in.
I was running low on insulin so I figured that I would request the RX to be sent to a local retail pharmacy so that I can pick it up on Friday or maybe Saturday since Optum wouldn’t deliver it until Monday.
When I went to the retail pharmacy they told me they didn’t have enough to fill the order so there wouldn’t be enough until Monday.
Ok still no worries because I have enough until then.
So yesterday I went to the retail pharmacy to pick up my one into insulin order finally and she said, “ok that will be $110″
Huh, excuse me? $110 that’s supposed to be $10 or $30 at most. Apparently there is a $100 deductible on retail pharmacy prescription but not mail order. Well, there’s no way I was paying $110 for one month because I don’t ever use retail so that $100 will just be a waste.
Ok now it’s getting time to worry.
I called in to Optum RX to get the mail order filled instead of the retail and only need to pay the $25 for 90 days like usual.
I know that Optum RX has a 24 hour order processing policy but really, how long does it take to process an insulin order.
Well as I’m sure you guessed the order didn’t process and ship yesterday so now it will ship today and won’t be delivered until tomorrow.
So now I have a 90 day supply coming to me tomorrow but I don’t have enough insulin to get me by till tomorrow so I asked if there was a way to get one vial of insulin to get me through till tomorrow.
Their answer… Yes you can pick up the vial from the retail pharmacy and we will grant an override but you will need to pay the $100 deductible. Well thank you very much but that doesn’t help me at all because that’s what started this whole damn thing.
This is just ridiculous. I know it’s the policy and I know it’s the rules but I do not use retail and will not the rest of the year but I need to pay the $100 deductible for 24 hours of insulin.
I am fortunate enough to be able to pay the $100 deductible because I have no choice but what if I didn’t. What if I couldn’t afford the deductible, how would I get my insulin? That one emergency vial of insulin is a hell of a lot cheaper than the trip to the ER that it will cause.
I am being charged $25 for 16 vials of insulin but I need to pay $110 for one emergency vial?
I have been with UHC and Optum for well over a year and they can see that I haven’t filled any retail RX so it’s not like I am trying to get over on them some how.
At the end of the day I am grateful to have the insurance and only needing to pay the little amount that I do. I went 2 years with no health insurance so I know the feeling of spending $100 for just one vial, but this is why I pay several hundred a month for insurance.
Something needs to change for emergency situations.
For the last few weeks I have been visiting my family in Pennsylvania. This is where my diabetes all started 10 years ago when I was diagnosed before moving to Florida. This trip is part of my summer work-cation since my wife is a teacher and I can work from anywhere with wi-fi. I normally come to PA for only a week at a time but this is the longest time period that I’ve spent up here in 10 years.
Before leaving for the trip, it took me a while to make sure that I had all the supplies that I needed. I also made sure that I set calendar reminders for any refills that I will need because when I’m up here with friends and family, the memory tends to slip because there is so much fun stuff going on.
Since I’ve been home, I’ve still been wearing my Medtronic 530G because I am finishing up my trial with them. I have not been very good with wearing my sensor however. When I take the sensor off, I have been taking a 3-4 day break in between instead of putting it right back on. I have also been taking a day break in between each infusion set change because I just need that break.
As I mentioned yesterday, I have been going through a burnout phase where I just couldn’t take anything additional diabetes related other than my daily management, and even that was becoming annoying. Since my large weight gain over the last 2 years, infusion sets just fall off like nothing, so it has become very annoying that I go through 4-5 infusion sets a week at times. Taking the day off in between changes has really made that feeling go away and helps me deal with an infusion set falling off if it does.
All in all, I am happy with my diabetes management in Pennsylvania. I typically eat out all the time and at a lot of unhealthy places so my sugars are all over the place. This trip has not been so bad.
Unfortunately, the trip is almost over and it’s back to Florida.
The last couple of months have gone by quick. It feels like the last 90 days has been about 2-3 weeks. Summers for me are always a very time consuming few months. My work actually picks up during that time period, my wife is off for the entire summer and I do a lot of traveling… just like most people do. This summer, however, has had a lot more traveling than normal, so I knew that I wouldn’t be able to keep up with blogging and tweeting and advocating and everything else that I normally do on a daily basis.
And ya know what? It felt so damn good to take this break. There have been plenty of times where I just felt overwhelmed with trying to keep up with all of the diabetes related initiatives that are always going on. I came to a point where I felt that I was doing something just to do it and I didn’t really have that much emotion or passion for whatever I was promoting or helping out with. I have a stack of about 5-6 diabetes related books that I just couldn’t read anymore because it was just too much diabetes.
After 10 years, these last few months have been my first real exposure to diabetes burnout. I just couldn’t take anymore diabetes other than the daily activities that I had to do to maintain a decent blood sugar. Do I want to go to the park with my nieces or read another post about the Scientific Sessions? Should I go out to the bar with my friends or write another post about my insulin pump? Should I hang out with my family and watch a movie together or chat online with others about diabetes?
To me, these answers were pretty damn easy to make over the last few months.
But, over the last few days, I have been missing it. I have began getting that itch again that I need to do something, I need to write something, I need to fight for something.
So, here I am. My batteries have been re-charged and I am ready to go. I know better than to just jump head first and go full speed ahead right away, but I am slowly getting more involved again and I hope y’all haven’t forgotten me too much!
I look forward to connecting and talking with you all again on a more frequent basis.