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Thursday, January 24, 2013

Where do I fit?

Over the 25 years, quickly approaching 26 years, of having Diabetes and a lifetime of watching family members live with Diabetes I still get very frustrated at the medical community, the Diabetes advocates and the information provided to those with and without Diabetes.

I have struggled for many years with my Diabetes and watched as my family members have struggled.  Due to the fact that we do not nicely "fit" into any "type" of Diabetes.  When you do not "fit" nicely into the categories they, the doctors, will still try and when all else fails call you Type 1 or Type 2 and still try to make you fit.  I have been called non-compliant because I refused to follow the high carbohydrate diets that some doctors and registered dietician felt that I should follow, I have been labeled with "severe diabetes" because the typical regimens do not work well on me.  I have been called a liar when I explain how certain medications work on me because according to what they have read it is not possible.  I have been called a liar when I gave the doctor my food diary and it showed how low carb I ate, but still had blood sugar levels into the 300's and taking the prescribed medication.  I make my current doctor scratch his head.  After losing 60 pounds, 20 more to go, it did nothing for my blood sugar levels, other than I keep having to increase medications for my diabetes.  Exercise does not lower my blood sugar levels as it does most people.  Although I still exercise for my health.  I take no medications for high blood pressure, don't have high cholesterol and never have had any problems with either one.  My pancreas has no beta cell loss and still produces adequate if not more than enough insulin after 25 years with Diabetes.  It is challenging because there is no consistancy with my blood sugar levels.  I am very consistent with what and how much I eat and everyday it is different with what my blood sugar levels are. 

I have tried to understand how my body works and doesn't work.  I do my best with what my doctor and I know together.  I continue to find answers but have come to the conclusion that I may never know and the medical profession may not either.  I have to accept that I and my family just don't fit and the best thing that I can do is find the best regimen that works for me to keep my blood sugar levels as close to normal as I can and find acceptance.  It has been a long road for me and it will continue to be but I have learned along the way and will continue to find what works best for me.  Although, I would like to say that it is okay not to fit into a category or type, but I would be lying.  Part of me would like to fit into a "type" of Diabetes so that I can feel like I can share my struggles and others would understand.  I don't know if that will ever happen.  Again I just need to learn to find acceptance and sometimes that can be difficult.

For me there is too much emphasis put on what Type of Diabetes that a person has.  When we do this it puts the diagnosis of Diabetes into a box and the doctors are only trained to treat what is in that box.  When a person doesn't fit into what they have been taught about Diabetes and the treatments for each type it makes it very difficult for the patient.  We need PATIENT CARE with Diabetes care.

I also have found that diabetics put too much emphasis on the type.  Type seems to mean much more than the fact that you have a serious disease, Diabetes.  Many Type 1's want to associate with other Type 1's because they can relate to that type and sometimes feel that a Type 2 is just about losing weight and exercising.  Some Type 2's even feel that their type is not as serious as a Type 1.  No matter what type of Diabetes you have it is serious.  I would hope that more people would be open to all forms of Diabetes and realize this. We all have room to learn and to help others.  Most of the information for Diabetes is relating to Type 2, and this needs to change.  Type 2's make up the large majority of Diabetics but they should not be the focus of all the attention and information.  Type 1's are unfairly left out in the majority of information given.  More detail needs to be given to all types no matter how small a percentage of them there are.  I know that it is important to sometimes point out the type when discussing Diabetes but more emphasis needs to be put on Diabetes as a whole and helping all Diabetics reduce complications and lead a healthy life.

We need doctors to look at the individual not just the Diabetes.  We need doctors to think "outside the box" and be willing to do what is best for that patient and not just follow the standard pharmaceutical protocol.  The medical profession needs to start listening to the patient and taking more time with them rather than a standard 15 minutes that is now allocated.  We, the patients, need to stand up and demand that we get the care we deserve.  We need doctors and diabetes educators to be more forthcoming with information and education that can be given to their patients.  We need to work as a team with our doctors and educators and have good lines of communication with them.  There are many good doctors out there that do this, but not as many as we need.

Looking at it from the standpoint of the doctor I do know how frustrating it can be on their end.  They are seeing many patients a day with different ailments and diseases, with everyone being at different stages of each.  I myself forget sometimes that after so many years of studying and reading and learning what I know now isn't what I knew in the beginning.  When someone is newly diagnosed, or a family member is newly diagnosed there is a feeling of being overwhelmed, feeling lost, not knowing what questions to ask, not knowing what foods to eat or not to eat, or just plain what to do.  I do forget what seems to be a rather odd question or simplistic question is in fact not.  A question is being asked because the person is needing information. 

All of us that have been doing this, living with Diabetes, for a very long time need to take a step back sometimes and put ourselves in the place of the "newbie" so we can help.  That is our goal, to help others.  The medical profession needs to do the same.  They become desensitized at times I believe because they have diagnosed and treated so many patients it becomes routine.  When this happens it affects the patient care and diminishes the magnitude of how serious this disease is.  The doctor needs to take a step back and realize this when dealing with a newly diagnosed patient. Taking time to explain about what is going on in the person's body and the plan of action that the doctor is taking and why will go along way in keeping the communication lines open between patient and doctor. 

My doctor told me on my last visit that his goal as my doctor, Endocrinologist, "was to keep me healthy and to keep me from having any complications from Diabetes."  His goal and mine are the same.  Normalized blood sugar levels with no or minimal complications.  In order for this to work I have to do my part.  I have to share with him my blood sugar levels that I keep a daily record of and my meals, along with any changes in my health.  I finally have found a doctor that is willing to think "outside the box" and work with me as an individual and realize that I don't fit anywhere so treatment can be challenging.  It took me many years and many doctors to find the right one that fits for me.  I know that this cannot always happen and may mean changing doctors many times to do this.  But never give up. 

I will continue my quest to find the answers as to the type of Diabetes that I have, I cannot let that go.  I need to find the answers and I hope that one day I will.  I may not fit into any type of Diabetes but I do fit nicely into the family of Diabetics.  That I know.