Introduction- The Humalog Sales Rep that got diabetes

Type 1 and LADA New to Type 1 Diabetes
1

I am not entirely new on the tudiabetes site as I joined in October 2009 but not very active I wanted to be more engaged and thus wanted to formally introduce myself.

I have had diabetes for about 6 years. The first time that I noticed anything was in 2003 when I was working as a sales representative for Eli Lilly selling Humalog Insulin (Talk about full circle). At least once or twice a month I would have these sudden sweats and a feeling of weakness when calling on my endocrinologists. I thought nothing of it and chalked it up to stress or not eating lunch but after some time past on my next check up my lab test came back elevated cholesterol but not to the point of medication and blood pressure creeping up as well, Classic start to metabolic syndrome but blood sugar still in range.

I found out later from talking with a diabetes educators that my sweats and feelings of weakness was probably low blood sugar caused by the start of my journey with diabetes.

In 2004 I left Elli Lilly (by the way one of the best company's I every worked for) to start something for my own. I noticed that in big corporation you’re just an employee, the days of stability is long gone. One day the company is doing the best it has in its history, the next a patent expires and fears of layoff are rumored. That is the corporate life, it comes with the career. I wanted to see if I could start something that I would have more control over for my future than what Eli Lilly could offer me at the time.

During my time with Lilly I learned much about the disease state of diabetes but more importantly I learned about the doctors who took care of patients living with diabetes. I saw feeling of frustration, happiness, anger, accomplishment and sometime a sense of complete failure and giving up in these doctors for their patients. I asked some of the doctors why they were having such a hard time with their patients. The answer I got most frequently was that they were "non-compliant". I asked the doctors what would help them become more "compliant". Some doctors felt that education was the key and that patient partnership was increased when their patient received education. Not all doctors felt this way though, Some doctors flat out said that their patients were too dumb to understand diabetes. WHAT!!! Talk about giving up on the patient.

I really don't like the word "non-complaint", that word to me is just a cope out for a healthcare professionals to dismiss a person for not being in control of their diabetes and brushing them off as a failure instead of sitting down with the person and not only find the clinical solutions but also asking why the patient was not able to do the things that was needed to control their diabetes. The emotional, behavioral and even financial side to diabetes is equally if not more important to discuss than the clinical. I like the saying patient partnership instead of “compliance”,

Well I took this key idea about educating people with diabetes to create better patient partnerships to our next big adventure. My wife and I took our savings, 401 and everything we had to start a unique business, Kelley is a pharmacist and I had the connections in the diabetes community and we started Diabetes Care Pharmacy in West Covina a one stop shop for people living with diabetes, All medications, supplies, products and most importantly access to quality education to hopefully make a real difference in peoples lives.

The road has not been easy but we have had a mild degree of success. We started delivering testing supplies to areas outside our city and in all parts of California, the extra revenue helped us to expand our diabetes program from a one table class to now a 1000 square foot program conference room in our West Covina facility and a new state of the art second generation program center in the city of Pasadena. We have educated 1000’s of people and have seen the difference that we made in both clinical outcomes but also on quality of life, I am so proud of the work that our team has done. But all the hard work, stress and not looking after my self took a toll on me early on.

My cholesterol, blood pressure and eventually my blood sugar all rose from the daily stress and long hours that starting a business takes out of you and developed signs of prediabetes in 2004 and diabetes in 2007. So now I am Type 2. I sometimes think that fate had it all written out for me. That starting a diabetes company and then getting diabetes was somehow meant to be? I’m not quite sure about that but what I do know is that I have a better understand of diabetes now more than every before because I personaly live with it.

I recently put some resources into our website and started a personal video blog of my experiences with my diabetes to see if I can help others looking for answers. If your interested please check it out and comment to let me know what you think www.mysugartv.com. I only have 10 episodes but its a start.... . As for my diabetes, I live with diabetes and it is a challenge, I know that I may not win every battle but I intend to win the war. My goal is to be a example of good control but still hold on to my quality of life. It is a total balancing act..

I would like to ask the tudiabetes community if most people have been referred to a formal diabetes education program ( at least 6 hours of education) and if it really helped. If it did not, what was it about the program that was did not work for you?

BTW….Kelley is still mad at me for leaving Lilly when we did as my team the “Beach Combers” West Coast Endocrine Business Unit, won an all expense trip to Cancun for our performance for the year. We were slated to go on July but did not make it as I quit to start our dream business in June. I promised Kelley that I would make it up to her and she is still waiting… I WILL.. I PROMISE.

-Tony

2

Wow what a journey!

When I was dx’ed type 1 13 years ago (I was 11) I had to endure hours of classes while in the hospital to make sure I’d survive outside of the hospital, same thing for my parents. Then there were classes done outside of the hospital to make sure I’d survive when I’m not being watched by the CDE the hospital assigned to me.

Did it help? Yes and No. While I understood what diabetes is and what that means to my life and what to do to stay healthy, I did not take that information and apply it to my life. My parents didnt help- they didn’t want to hurt me or potentially kill me, so their training went out the window. As for me, growing up with diabetes as a pre-teen up to adulthood, I rebelled against it. It took until this year to really get control over the situation and be labeled as “compliant” and even that is borderline.

there really isnt any follow up with these programs. for example- If I knew that I would have to check up with a professional quarterly and take classes quarterly if I was noncompliant, I would have made sure I was compliant so I wouldnt have to check in, so to say. But then again, I do things to avoid the bad :stuck_out_tongue:

3

Looked at site and it is good information. I had a class while in the Dallas area but there is little in Baton Rouge for education unless you are on medicare.

4

Tony, I have been saying for 30 years that the problem with health education is the lack of follow up and follow through. A one time education, regardless of number of hours or days, is not sufficient. Chronic diseases of all kinds need annual refreshers and “updaters.” So if you are doing that, good for you.

5

Hi Tony,

Quite a road!

I was referred to a diabetes ed through a local hospital. I was newly diagnosed, knew nothing & eager to learn. It was a series of classes. I dropped out after the second session because I was the only T1 in the class & nothing pertained to T1. The ed classes were dumbed down & useless for T2s also. We were given a book to read & the instructors read it to the class page by page. Plastic models of food were used–eye rolling.

I’m hugely in favor of diabetes ed, but what I attended wasn’t worthwhile.

Hope Kelley gets hers trip!

6

Hi Sarah, thanks for the reply.

I’m glad that you are getting there. I can’t imagine what it is like to be in a T1 shoe but to say that it may be like having T2 x 100.

Your reply reminds me of a call I took last week from one of our long time pharmacy customer’s mother. We have taken care of this family since her daughter was diagnosis in the hospital 5 years ago. The mom told me that her daughter who is now in her teenage years did not seem to care about her diabetes, missing boluses, not testing as she said “not taking it seriously” but from what you are saying, this is obviously not uncommon. I did not know what to say to the mom. I gave her this community (tudiabetes.com) and encouraged her to introduce it to her daughter.

What else could I have done? If you have some insight can you share with me.

Your comment on parents makes me think of all the parents that I have meet along the years making the first delivery of diabetes medication and supplies to the hospital. Some parent were very engaged and supportive with a mind set of “ok this has happened so let’s move forward” and others were just stuck in disbelief and thinking the worst, Some show emotion in front of their children others are very stone faced. In one instance I saw the shame and blame put on the child by the parent for burdening the family with diabetes. That was hard for me to see and feel.

I agree follow-ups puts everyone on the same page of responsibility but I also like to see patient and medical professional have a partnership and maybe even a friendship. Not “follow-ups” but “catch-ups” to catch up with each others lives and also discuss any the diabetes issues. I’ve seen it and it works.

-Tony

7

Hi Phill,

Thanks for the reply and your gracious complement on the website.

One of our past educators was involved with a mobile diabetes education mission in Louisiana for a week. She loved it and made a huge difference in peoples lives. Your right it’s hard to find education centers let alone quality ones as not all program are a like. Although they all have a standard curriculum, they all have different cultures and feel.

8

Hi Neil,

Thanks for the reply,

Yes we are a bit unique in that we also offer both an education center and a pharmacy so our patients come in every month for thier medications and supplies as well as f/u visits with the educators. It really works and we build great friendships with all our patients

-Tony

9

I’ve been to a couple of meetings the hospital holds, but i find that i’m the only type 1 and i’m the youngest in the room. The last one i went to was on monday, it was okay. they had a rerpresentative from “dining with diabetes” (osu) that came to teach us about food and the program. Alot of it was stuff i already know, but it was fun to eat the low carb samples.

I’m asking my doc for a referaal to a one on one diabetes session with some local diabetes educators. it should be interesting because i don’t really need to be taught anything… but i’m sure i can learn something new anyway esepcially since it feels like i’m starting all over. I learned alot of what i know from tudiabetes, the internet (hopefully good sites), and from books at the library. After while they blend together and say the same thing, which is why tudiabetes is so fresh.

10

Hi Gerri,

Thanks for the Reply

Unfortunately, what you went though is very common in the diabetes education community. We observed and audited many different diabetes program before starting ours and all of them did exactly that. In fact one program crammed everything into a full day (8hours) my head was BUZZING after that one.

I believe that programs should be based on a conversation not a lecture. In fact about half of the learning happens between the participants, the educator just becomes the leader of the discussion. I agree that most programs lean to information to T2. The reason why is because it’s hard to get a class of T1 just because of the numbers but the way that an education center can get around it is to offer a specific program for T1 and (T2 on insulin).

Kelley will be happy to hear that she has a Cheering Section :wink:

-Tony

11

Hi Domo,

Thanks for the Reply,

Yes, that usually the case with diabetes programs, They do gear toward the T2 The reason why is because it’s hard to get a class of T1 just because of the numbers . Some sophisticated programs have a specific program for T1 and T2 on insulin. Another resource for T1 is programs sponsored by insulin pumps as they are somewhat geared to insulin patients and usually have experts that understand the needs of T1. Check out their website for free classes on carb counting and how to effectively cover your carbs, although they sometimes can get a bit salesey as the goal is to introduce pumps to the attendees but you should know about them anyways.

Here are the links to there sites for locations and time.

Medtronics: https://www.minimed.com/events/intro.do
Omipod: http://www.myomnipod.com/about-insulet/contact-information/
One Touch Ping: http://www.animascorp.com/animas-insulin-pumps/onetouch-ping

I’m gald to hear that you are engaged in your diabetes.You are correct tudiabetes is a great place for people living with diabetes .

-Tony

12

Hi Tony,

I wondered if my experience was unique, or the norm. Disheartening to know that this is typical. I spoke with people in my class during breaks & they were just as frustrated with the format & content as I was. The subtext was also condescending. As usual, diabetics were made to feel responsible for their disease. Shame & blame once again.

Agree with you that education should be a discussion, not a lecture. My husband’s a college professor & that’s his philosophy as well. I’ve done a lot of training sessions in my professional life & facilitation is the best route.

An 8-hour program!

As more T2s are put on insulin, having insulin ed classes for T1s & T2s on insulin is a wonderful idea. Courses should also be geared to teenagers. Quite different dealing with diabetes as a kid, teenager & as an adult. Teen peer instructors would be great because this is the most challenging time to manage diabetes.

For a disease wholly dependent on self-management, it’s a travesty that people aren’t given adequate tools. Countless times I’ve read here how people, many long-term diabetics, weren’t provided info. Doctors are too busy & many diabetics don’t have access to or can afford CDEs. Ongoing ed is important. Diabetes isn’t a static disease.

Wonderful what you’re doing!

13

As a T1 for 30 years… updates and refresher training is fine. But no such thing exists. There are only beginner after beginner classes, stuff like carb counting and bg testing, where the most advanced step is “you have to take insulin now”. I simply don’t have the patience to try to take another refresher class that consists of bg testing and carb counting spread out over weeks slowly working their way up to insulin… which is where I’ve been for 30 years now.

Now at the same time in those 30 years a lot has happened. I got started on home bg testing just a few years after diagnosis and ended up helping out at the state hospital teaching nurses and other T1 kids the ins and outs of that “new” innovation. I switched to MDI… not by being trained in MDI but being frustrated with two shots a day of R+N and knowing that there had to be something better. Yes I had read bits and pieces and was tracking the early stages of the DCCT, that’s how I knew about all that new technology.

14

When it comes to being a teenager not taking care of myself… it was mostly due to feeling so alone. I was the only diabetic I knew. Its that time where everyone wants to fit in somewhere and find who they are or at least think they are. I tired going to support groups to feel not so alone, but the only support groups I found were general diabetic support groups and they were always filled with old people with type 2. So not only did I feel alone I also felt like I was the only young person who had an old persons disease.

If there were support groups for people with type 1, open to all age groups, or even open to those 11-17, it might help a little bit.

15

Tim sounds like you need to start up a class that teaches people more than the classes in you area.
I will end all comments like this for a little while.
“Got a call today, Friday, to make sure to keep appointment on Monday. Went to the pharmacy to get normal scripts and got the 100 mL syringes instead of 50 mL that were just filled last week. I got a feeling that there will be no pump in the near future.”

Phill D

17

Thanks Gerri :wink:

18

Hi Tim,

Thanks for the reply,

You are right, diabetes programs are not geared to T1, and the existing T1 programs may not be as advanced as most T1 need as if you have lived with diabetes for a while you can probably teach the sessions. I have a questions, What type of update and refresher training do you mean (my thought would be pump use, new medications such as Symlin, MDI) any other topics?

I’m with Phill, teach others your experience, your words speak louder than most because they are backed by action and 30 years experience. Keep it up.

-Tony

19

Hi Emmy,

Thanks for the reply,

I would not have considered what you got as diabetes education. But unfortunately most so called diabetes educations are that way. Real education can only be done over time and great curriculums are usually 8-10hours. I know, you may be saying 8-10 hours!!!. Believe me, if the program is done well those hours fly-by, but it needs to be interactive and it has to be fun. It also has to touch on both clinical information as well as emotional and behavioral information. Believe it or not, lot’s of laughing happens in good programs.

It is great to hear that you are empowering yourself by learning as much as you can to make the choices that’s best for you when it come to diabetes.

-Tony

20

My 20 year D life experience has been almost the exact same as Sarah’s. Someone else commented that she knew more than her doctor did about the disease. I feel that the partnership approach with the right doctor’s, nurses, nutritionists, and CDE’s who are engaged is the only way to achieve success. I’m 33 weeks into pregnancy and I have been in the hospital for the last 5 weeks due to 4 AM Low’s and high fasting BG’s, which we finally got under control after about a week of tweaking. There are no other concerns to address with the pregnancy at this point and it’s going really well. I thought I would be here for a week or two, but I am still here and I believe I’ll be here for the remainder of my pregnancy if my OB has his way. I have five weeks to go. My daily routine is just this. I’m on a pump so I check my BG’s, I keep a log, and I administer all doses. The doctor (OB) comes in everyday, looks at my log; we discuss it and he asks ME what I think we should do. We discuss it some more and then he sign’s off on it, updates my chart and he bills my insurance for the $275 in hospital visit that lasts for about 5 minutes. If we aren’t sure we call the CDE or the nutritionist to discuss. This has been the routine for the last five weeks. The nurses come in to take vitals, give me a vitamin, write down my BG’s and to chit chat. I really think I could do this as an out patient, but my doctor feels that we will be more successful in a more controlled environment. I really feel that I’m here because of a learning curve that exists (he has mainly worked with T2’s and Gestational D’s patients on MDI). Also, in the hospital they only use NPH and Regular insulin and they don’t know that much about Fast acting Insulin because they don’t work with it. Anyway my point being that I have had to teach him and everyone else involved here about my pump, the insulin I take, my body and my diabetes. While being in the hospital, I’ve noticed that there is a learning curve with doctors, nurses, nutritionists and sometimes even the CDE. It really does take a village to achieve success and everyone needs to be on board and engaged ALL THE TIME. I think that’s why TU is so great and so successful! TONY, I like what your doing…keep it up!