Saturday, February 8, 2014

The Unknown - My "Type" of Diabetes -- Part 1

What is your answer when you are asked  ~~
"What type of diabetes do you have? Type 1 or Type 2?"

For 26 years I answered -- Type 2.  Now I answer -- Type 1.  So that means that I have LADA - Latent Autoimmune Diabetes of Adults...NOPE...not that type either.
"What? I don't get it"  I don't know if I completely get it either.

Even though I am currently "classified" as a Type 1 for the type of diabetes that I have I still am in the unknown category.  Ah yes, it is still a mystery, a secret which I have yet to discover or uncover.  With all of the technology and scientific discoveries in Diabetes Land one would think or assume that this would not be difficult to find out.  Come on, we have cell phones, Skype, FaceTime, Insulin Pumps, CGM's (Continuous Glucose Monitors) and yet THEY cannot tell me what type of diabetes that I have!!

Am I surprised ? NOPE not by the least.  I tend not to take the simple road in life and just accept what is handed to me or take a diagnosis of Type 2 diabetes and accept that label.  That is why I have landed here into the abyss, the unknown land of diabetes.

It has been a long road, a journey that I do not regret.  I was diagnosed at age 19 with diabetes, no medication needed, although I had blood sugar levels that averaged 180 (A1c not available then).  Many years passed, still no medication offered nor did I ask because at that time I did not know what to ask.  In 1998 with blood sugar levels in the 400's I was put on medication.  This was the start of a very long traveled road.  I have, from 1998 to 2013 taken all but 4 of the available medications for Type 2, that my friends is a boatload of medications.  Partly due to the fact that whichever doctor I was seeing at the time would scratch his or her head and try another one.  Surely something would work.  All were reluctant to put me on insulin because I defied the odds and he or she needed to prove that there was one that would work for me.  The other reason was that I too was persistent, okay stubborn, to find the one or combination of medications that would work AND I drove a truck and would have to quit if I started using Insulin.  Should I have just gave up and started using insulin? Probably, but it is not always that easy.  And I am actually glad that I chose this route.

In 2009 I started seeing a new Endocrinologist with an A1C of over 11%.  Yep it was high.  My first appointment he said that I would do much better with controlling my blood sugar levels with insulin.  I again balked and decided against it thinking surely he would be able to find a medication regimen that worked for me.  I was not ready to up and quit driving a truck with my husband.  I did not want to be the reason for us HAVING to quit driving, for many reasons.  I was determined to make this work.

I struggled yet again.  I eat healthy, always have.  Since the 90's even before being diagnosed I have eaten low carb.  I have been through all of the nutrition classes, hoping that I would find that one little piece of information that would help me to lower my blood sugar levels.  Of course it never did,  I just found myself frustrated at the notion that I should be eating more calories, more carbs, less fat and protein. That people, NEVER WORKED.

I really have lost count how many times I would break down and just cry.
Frustrated and lost.   Why does this have to be so hard?  Why when I do everything right that I am lost as to what to do to bring down my blood sugar levels?  It's crazy, because I was able to help, guide and lead others to a better life with their diabetes helping them to achieve lower blood sugar levels.  Why couldn't I? What was I doing wrong or missing? Why when I exercised my blood sugar levels would go up and not come down like everyone else? Why would my blood sugar levels increase when I ate a piece of meat?  Nothing made sense to me and I became more frustrated, lost and determined.

So I would read more, try different combinations of foods, add in more supplements.  Tried exercising at different times.  Continually trying a new medicine.  NOTHING ever worked.  I was lost, afraid and sad.  But I still chose NOT to give up.

Many years ago I had started reading about different, rare types, of diabetes.  I had stumbled upon something called Monogenic Diabetes.  I had filed it away, way back in this little brain of mine, but not to far back that it wasn't accessible. Thank goodness.  So sometime in 2011 or 2012 I pulled that information out and started searching again for answers.   I kept all of the information I discovered to myself for many months, not discussing it with my husband or doctor.  At this point I think everyone was tired of my belly aching and at one point I was told that I was obsessed with MY diabetes and that people were tired of me ALWAYS  talking about it.

This is when I started on a new journey.

Stay tuned for Part 2.