Forming a Partnership with Your Healthcare Team: Tips From a Type 1 Pharmacist

| Sep 11, 2009

I remember it like it was yesterday. It was the night before Thanksgiving, and my family and I were driving to my parents' house for the holiday weekend. I am usually the one who drives, but this time my wife insisted on taking the wheel because I was so dizzy and light-headed that I could hardly stand upright. Over the course of the previous week, I had not been feeling well. I had been getting up frequently at night to use the bathroom, was insatiably thirsty, and had been so dizzy that I had actually fallen down several times.

During the drive, my wife, who is a registered nurse, suggested that I check my blood sugar. This seemed ridiculous to me-how could I possibly have diabetes?  My symptoms had sprung out of nowhere, not to mention that I was only 25 years old and in relatively good shape. My wife was quick to point out, however, that I had many of the classic symptoms, including excessive thirst, frequent urination, blurred vision, and dizziness. Of course, I had an explanation for every symptom. The last thing I wanted to acknowledge was the possibility that I might have diabetes.

Later that evening, to set everyone's mind at rest and prove once and for all that I did not have diabetes, I agreed to use my father's blood glucose meter (my father was diagnosed with type 2 two years ago). After poking my finger, I carefully applied a small drop of blood to the test strip and counted down: 4...3...2...1. What I saw next sent me into a state of shock: my number was 476.

After a long silence, I turned to my wife and said "Well, I guess this means I shouldn't eat the pumpkin pie tomorrow." We rushed to the urgent care for my first (but not last) dose of insulin, and shortly thereafter I was diagnosed with adult-onset type 1 diabetes.

For some of you, this may sound all too familiar. Whether you used a friend's blood glucose meter, attended a diabetes screening at a health fair, or just learned from your doctor after a routine physical, the news that you have diabetes is never something you want to hear. And if you are anything like me, you had to deal with a healthy dose of denial before taking full responsibility for your diabetes. All of a sudden you have to take medications to manage your blood sugar. You have to poke your finger to test your blood sugar several times a day. Now you have to go see a doctor for your diabetes and a doctor for your eyes, and don't forget about that appointment with the dietitian. It's a tremendous amount of information to process while coping with the fact that you have a chronic, life-long disease. I found it very difficult to come to grips with the reality that I would need to use insulin for the rest of my life. The notion of implementing insulin use into my daily routine and being "dependent" on insulin was overwhelming and depressing.

My resistance to insulin was surprising to some who know me. I am, after all, a pharmacist. They told me, "Well, at least you are a pharmacist and know what you're doing," but it really didn't feel that way. Sure, I had talked to customers in the pharmacy about their insulin, countless times. Every day that I worked at the pharmacy, almost without exception, I talked to somebody about how to take their diabetes medication, what side effects to expect, the importance of monitoring for low blood sugar....you know the drill. I was very well trained and knowledgeable about diabetes medications, but when it was me taking the medications and dealing with the disease, all of that knowledge and experience seemed to go right out the window.

It was a turning point in my life and career, a truly eye-opening experience. I thought back to all of the people who had come into the pharmacy for their very first medication to treat their diabetes. I thought of the many people who had asked me for advice as they picked up their first month's supply of insulin because pills were no longer controlling their blood sugar. I recalled all those who had asked me for advice at the counseling window because they had just been told that they had pre-diabetes. Had I done enough to help those people? Most of them did not have medical backgrounds, yet here I was, a pharmacist, struggling with the notion of taking insulin and the fact that I have diabetes.

It took me over a year to overcome my fears and stubbornness enough to allow those around me to aid in the management of my disease. I thought I knew it all, but the key was letting other people in and allowing them to work with me as a team to direct my care. Now, I strongly believe that the best thing you can do for yourself and your diabetes is to form a partnership with your healthcare team. Strength does come in numbers, and sharing your burden with people who want to help you can lift a huge weight from your shoulders.

Here are a few steps that you can take to form a partnership with your healthcare team:

1. Foster a relationship with a primary care provider whom you trust

Without trust between you and your primary care provider, communication suffers. And without good communication, making progress in your care is next to impossible. It isn't always essential to be followed by an endocrinologist, but your primary care provider should have a healthy understanding of diabetes and be able to answer your questions in a way that is easily understandable and gives you confidence in his or her ability to care for you over the long haul.

It is nearly impossible for your doctor to make informed decisions on your behalf without having reliable, timely, and correct information. During the first few visits with my endocrinologist, I recall being rather embarrassed about my blood glucose readings and the types of foods I was eating. I remember thinking "Maybe I'll leave my meter at home and tell him I forgot it, so he can't see how bad my blood sugars have been." I wanted to be a "good" patient and was fearful of letting him see that I was doing a less than perfect job. 

Despite my fears, I shared my blood sugar readings with my doctor and was honest about my eating habits. To my relief, he was not judgmental. He reassured me that this process would take time, and he was happy that I was honest with him so that he could make informed decisions about my care. I like to think of it this way: You wouldn't want your stock broker making changes to your stock portfolio without first looking at trends in the market. Neither should your doctor make decisions about your diabetes treatment without first understanding the trends in your blood sugar and eating habits. 

2. Seek out experts to help you troubleshoot

Although it's vital to find a trustworthy primary care provider with whom you are comfortable, it's also important to have other people on your team.  Try thinking of your diabetes team in terms of a basketball team. Your center under the basket isn't going to have the same skills as the point guard handling the ball, right? Likewise, it's in your best interest to find a diverse group of people with whom you can talk about your diabetes. Your specific choices of people for your team will ultimately depend on your needs, but you may consider adding someone who is knowledgeable about your medications, a trusted pharmacist perhaps. You may want to find somebody who can help you figure out the diet that is best for you, such as a dietitian who works closely with your doctor. And maybe you would like to add a certified diabetes educator (CDE) who's available by phone for on-the-spot questions that you may have. I always encourage people to consider building a relationship with a CDE if they have the opportunity. CDEs have a wealth of knowledge and experience.

3. Talk to and listen to others in the same situation

I am a big fan of support groups. There is strength in numbers, and it can be very encouraging to talk with other people who are facing the same difficulties that you are. There are also a number of publications that provide resources and valuable information regarding diabetes. Magazines such as Diabetes Health are very informational and fun to read. Some of these groups and magazines will even take your questions and find an expert to provide you with advice.

Although many of us, myself included, find it difficult to ask others for help, it is important to remember that the people charged with our care want to do everything in their power to help us. Once we have formed our healthcare team, we should provide its members with the most accurate information we can-even if we aren't always proud of what we have to report. And we must take it upon ourselves to ask for help when we need it.

It is through partnership that our personal strengths and the strengths of those around us can synergize and flourish. A partnership with a healthcare team allows you to share not only your burden, but also the joy and camaraderie that comes with overcoming struggles and hardships together.        

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Categories: Blood Glucose, Blood Sugar, Community, Diabetes, Diabetes, Food, Health, Insulin, Living with Diabetes, Losing weight, Type 1 Issues, Type 2 Issues


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Comments

Posted by pollockm on 15 September 2009

Joshua's experience with diabetes so closely resembles mine.August 27th, 1974 was the day Type 1 diabetes came into my life. I was a 25 year old pharmacy school graduate intern experiencing the 3 polys and totally ignorning these symptoms for over a week. I had a younger brother and paternal uncle with Type 1 diabetes since childhood but I never thought it could happen to me. While at work I decided to check my urine with some Ketodiastix (this was before blood glucose meters)and the result was positive for glucose and ketones. I received a formal diagnosis later that day in the hospital emergency room with a blood sugar of 574! It took a few years for me to face the reality of it all and that being a Pharmacist did not make my diabetes easier to control. I have had the help and guidance of many excellent health care professionals over the years allowing me to continue to work full time and remain free of diabetic any complications.
Marc Pollock, RPh,CDE

Posted by Anonymous on 17 September 2009

The shock is no less when you are told you have diabetes, type 2. For a year I had been searching for reasons as to my constant fatigue, thirst, and craving for sugar. Some things were found, but the problems still went on. Finally I wound up at the opthamologist because I could not see beyond the end of my nose. When he was filling out papers for the visit I told him not to put down an eye exam for vision as my insurance would not pay. He asked what he should put down and I said diabetes. We looked at each other and he called my PCP and said the lab should do a test for values. Their lab used urine tests only, I was diagnosed in 1983 and meters were not common. That evening I was sent to the hospital with bgs over 700. I learned about the effect of food on numbers, and how to shoot insulin into me!!!!!!!! Up until then I was needle phobic, but you manage. When my bgs got down around 300 I was sent home, a diabetic facing a lot of life changes. But I was so glad to have a diagnosis that I plunged in to gathering all the knowledge I could, so I could effect whatever changes were necessary. It's been a long time, at times you really get tired of it, but I have tried to make eating lower carb and knowing when I need insulin a habit so that it can carry me thru the bad times.

Helen

Posted by Anonymous on 18 September 2009

why does he say he is resistance to insulin instead of not making insulin?

Posted by rosiolady on 18 September 2009

I was diagnosed in 1970 at the age of 29. It was overwhelming, exactly as the author and the other person commenting above noted. Back then there were no A1c tests (I hate to think what mine must have been at first!) Also, there were no disposable syringes and no fast acting and basal insulin, no blood glucose meters. Wow! Here I am at age 68 and still kicking! Amazing! I was truly in denial and extremely depressed by my diagnosis and I was raising a small son by myself. Back then the doctors told me I could never live alone, and that if I did everything exactly right, I might even live to age 50. There just was very little (if any) support around for me the majority of the time. When diagnosed, I didn't even know another person with type 1, although I had heard of it--how you go blind and your legs will be amputated. No wonder I was so depressed. So there is still no cure for type 1 diabetes, but the circumstances for those who have it are a lot better now.

Posted by Anonymous on 18 September 2009

I think he means he was resistant to using insulin as a medication, not that he had insulin resistance.

Posted by cde on 19 September 2009

For Anonymous, I understood that the author meant that he was resistant to TAKING insulin, not that he had insulin resistance. But the author will have to clarify, as his weight and his being in only "relatively good shape" may be a factor in insulin resistance, although these factors do not play a role in developing DM1.

Dr. Stan De Loach
México, DF

Posted by Anonymous on 23 September 2009

Thank you for the article. Very informative and honest.


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