Monday, November 19, 2012

My life with Diabetes

I remember as a child learning a little about Diabetes.  My grandma had Diabetes and I was very close to her.  All I really knew was that there were some foods she could not eat because she had Diabetes and was told she couldn't eat those foods, like bread, potatoes or sweets, because her body worked differently.  At holidays and birthdays there were still the pies, cakes and goodies.  She would bake them for everyone else, she just didn't eat them.  No one offered her any nor did I ever hear her complain that she couldn't have any.  It was just accepted. 

That was in the early 1970's.  Diabetes was never discussed by or with grandma.  It wasn't talked about on television, there were no articles in magazines and there weren't the thousands of people trying to make money by selling "stuff" that is "good" for diabetics.  It seemed easier then.  Although there was no self testing of blood sugar levels back then, no meters, just a lot of doctor visits.  She was not on insulin then just oral medication.

A few years later a new family moved into our neighborhood.  The oldest girl Kathy, the same age as I, had Diabetes.  Because my grandma had Diabetes I was already familiar with the routine, I thought.  Kathy was different I found out, she had to take shots.  I would go with her when it was time to take her shot.  The only questions I remember asking were "does it hurt?" and "why does Kathy have to take a shot?".  I told Kathy's mom that my grandma had Diabetes but she took a pill.  She explained the difference between Kathy's type of Diabetes and my grandma's.  To us kids, or to me it really was no big deal.  Kathy didn't get to have cookies, candy bars, just Angel Food cake on her birthday.  No big deal.  We didn't offer her any cookies or candy and didn't eat that stuff around her and she never asked for any.  We knew Kathy had Diabetes and took shots, but no need to talk about it, discuss it or make a big deal about it.  She was no different than any of us.  There were just certain foods she couldn't eat.

My 6th grade teacher, Mr. Howe, had Diabetes, type 1.  He explained to the class about Diabetes and that we might see him eating during the time we were in class, and that we might see him giving himself a shot.  No big deal to any of us kids.  He asked if we had any questions, and a couple of kids did, mainly if the shot hurt and what kind of foods that he could and couldn't eat.  It was accepted, not talked about or discussed..
A couple of my neighbors also on our street had Diabetes.  Even though I knew many that had Diabetes, it still was not very common nor was it really talked about.  I knew that it was a very serious disease and it was important to take care of oneself as I had been taught.

My dad made sure that he educated us on healthy eating habits and would tell me that I would most likely develop Diabetes later on.  Thanks dad, just what a kid wants to hear.  My mom had not yet been diagnosed.  I knew my grandma had Diabetes but was then was told that her mom had Diabetes and that it was inherited. 

Even into the 1980's there was very little talk about Diabetes.  You only knew about it if a family member, friend or neighbor was diagnosed.  It was a serious disease and was taken seriously, just not talked about.

My mom was finally diagnosed when I was in high school.  None of us were shocked or surprised.  But mom had a sweet tooth and loved her Pepsi.  We were allowed very little junk food or sweets, just on occasion, and definitely not allowed to drink soda.  Mom did pretty well adjusting.  My brother didn't because he loved the sweets and soda and no more for him either.  I didn't adjust well to no more fried potatoes. 

Mom was the first in our family to have a glucose monitor.  The monitors back then were not too expensive and the insurance paid for plenty of test strips.  She tested often and decided that she needed to start checking the family.  I think she was actually shocked to see my blood sugar higher than hers, and I was the one who ate the healthiest.  So one year after my mom was diagnosed, I was diagnosed, at age 19.

I did not discuss it with anyone, nor did I tell anyone.  I really don't know why.  But I remember thinking that I was too young to have Diabetes.  Adult Onset Diabetes was for older people.  Juvenile Diabetes was the younger people like my friend Kathy or Mr. Howe who was diagnosed as a child and they had to have shots of insulin, I did not.  I felt odd.

I remember the Doctor telling me that I was definitely too young to have Diabetes but I actually was "borderline" with a fasting blood sugar of 150 and a post prandial (post meal) of 180.  No medication needed.  I was young and could eat healthier and exercise more. 

Around the time I was diagnosed with Adult Onset Diabetes, Type 2, it was starting to be discussed more and more people were talking about it with more information available.  Although we didn't have the internet yet there were more articles in newspapers and magazines and many books on the subject.   I still was not talking about it.  I didn't want anyone to know.

Again in 1992 I was given an OGTT (Oral Glucose Tolerance Test) by a different doctor and told I had "borderline" Diabetes.  No medication needed.  Change diet and more exercise.  Yes I was awfully young to have Diabetes I was told by the doctor but when I told him about the others in my family he said "well, unfortunately due to genetics you didn't have a chance". 

I really ignored the change diet part because I had always eaten pretty healthy and was now exercising more. By this time I had already moved to Arkansas from California and I walked with my grandma daily.   She still was very strict about what she ate and still exercised daily.  After my doctors appointment I told her what the doctor said and she bought me my first meter and gave me strict instructions.  When grandma handed me my meter, she looked me straight in the eyes and said "you use this and test daily".  As I looked at her she had tears in her eyes.  I became the 4th generation to have Diabetes.  My grandma had seen Diabetes take her mother's life.  My great grandma Laura was on insulin because that was the only treatment available in her day.  She died the day after Christmas in 1953 at age 65 after going into a diabetic coma.

My grandma didn't talk much about her Diabetes.  She exercised daily, was very strict about what she ate, which was low carb, and tested before and after meals.  She knew she was doing everything right and had been since she was diagnosed.  I would see the tears in her eyes and the disappointment in her face after she tested.  She was always "high" never within the target range.  After meals she was consistently over 180 usually into the 200's.  I found out the doctor wanted her to go on insulin and she had refused.  When I found this out I urged her to start using the insulin.  She wouldn't discuss why but she flat refused.  A couple of years later she did start using insulin but started having too many lows and stopped using it.

It wasn't until after her she died in 1997 at the age of 77 due to a complication from a quadruple bypass, that I finally realized how scared she really was and why.  She knew the insulin caused her mother's death and she was scared that it would cause hers.  The irony was that because of her long history of high blood sugars it caused her to have cardiovascular issues resulting her to have severe blockages in her arteries requiring her to have the bypass.  Unfortunately there were complications from the surgery which caused her death.

My mom struggled with her diabetes as well.  Doing everything a type 2 should do.  Changed her diet, exercised, lost weight took her medicine as prescribed and tested daily.  She to eventually went on insulin because nothing was helping to control her blood sugar levels.  She was on insulin for a very short time because she was diagnosed with cancer, stage 4, in August of 2003 and died on October 29, 2003 one month before her 58th birthday.  Before she died she told me she was sorry that she had passed on the Diabetes to me and she regretted not taking better care of herself.  She blamed the Diabetes and high blood sugar levels as the reason she got cancer.  I had by then started educating myself about Diabetes and nutrition.  She asked me to continue and learn as much as I can and promise her I will take care of myself and help others including those in my family that have Diabetes.  

In 2001 I started a non profit organization, ATDDA (American Truck Drivers Diabetes Association, Inc.) to help other truck drivers, their families and the trucking industry.  Because of my struggles of learning how to adjust to my life on the road with Diabetes I wanted to help others.  Over the years I kept doubting my ability to help others because I couldn't even help myself, I struggled, although in a different way that I see now.  I didn't do anything with ATDDA because of my self doubting.  In 2012 I kicked myself in the rear and decided to go forward.  Hearing too many stories from drivers about the lack of information for drivers with Diabetes and talking with many who chose to do nothing because they either did not have education or the information needed I then decided I had to do something. 

The determination to help overtook my self doubts as well as remembering the promise to my mom.  In 2012 I got busy working again on ATDDA.  I have become more involved in the DOC (diabetes online community) and speaking out and educating.

In my 25 years now that I have had Diabetes I have struggled as well.  I followed the family in the "doing everything right as a type 2" and not having the results.  Even though I was young when diagnosed and have many family members that have Diabetes no one in the medical industry pursued digging deeper, seeing anything unusual that would warrant or question that maybe our family doesn't have the typical type 2.  Some in my family are overweight, caused by the Diabetes, and most were diagnosed in their 40's and 50's. 

My family history of Diabetes is as follows: My great grandma Laura had Diabetes, she had 8 boys, 6 of them had Diabetes, 2 girls, 1 had Diabetes, my grandma.  My grandma had 5 boys all have Diabetes, 2 girls, 1 had Diabetes, my mom.  I have Diabetes and one of my brothers has Diabetes, he was diagnosed in his early twenties, my other brother does not.  One of my uncles has 2 daughters with Diabetes, another uncle has one daughter with Diabetes. 

The more I learned about Diabetes over the years I kept questioning why so prevalent in our family and why we all struggle.  I went through a difficult time many years ago struggling with this.  Many people with type 2 are able to lose weight and many are able to get off of their medications.  I have had a weight problem as most of my female relatives do as well.  I have complained to every doctor that I have seen that I struggle with losing weight.  I have eaten very low carb for many years now, which never seemed to help with my blood sugar levels, nor has it with any of my family members. 

I kept looking for answers promising never to give up doing this in memory of my mom, grandma, great grandma and the rest of my family.  Many years now I have tried to do everything I know to do and stay off of insulin.  Partly due to the fact I would be unable to drive a truck if I went on insulin.  The other part I kept thinking I can do this, I am just missing something in my meal planning and exercise regimen.  No matter how much I exercise or how many carbs I cut out my blood sugar levels kept rising. 

The stubborn part of me wasn't going to give up.  I would exercise more cut out more carbs add in more protein, less fruit, more vegetables, lift weights.  The weight wasn't coming off and my blood sugar levels were rising.  I was on 1000mg Metformin twice a day and Starlix 120mg three times a day.  I decided to change doctors again.  I had already been on many different medications over the years.  I knew insulin was to be next.  In 2009 I started seeing a different Endocrinologist.  My A1C at that time was 11.7.  Too high!!
I knew it was.  I explained to my new doctor my struggle with high blood sugar levels, inability to lose weight and how I ate and my exercise regimen.  Every doctor I had seen over the many years I would tell this to.  Basically I would get the look of "I know she is lying, there is no way she is eating low carb."  I told my new doctor the reason I had tried to stay off of insulin, so I could keep my job.  Although I knew that it was time I would have to make this decision.  He wanted me to go on insulin and once again I asked if there was another regimen.  He took me off of Starlix and started me on Glimepiride.

Since I have been seeing this Endo, we have added many medications, just adding in another one last month.  I now take Victoza 1.8, Glimepiride 4mg twice a day, Starlix 120mg twice a day, and Metformin 1000mg at night to help with the high blood sugar levels in the morning.  I know this is a lot of oral medications and most do not agree with this method and say I should be on insulin.  In July my A1C was 5.7 which is the best that it has ever been.  My morning blood sugar levels are now usually under 120 which is down from the 200's in the morning.  My last A1C last month was 6.7.  So the Starlix was added. 

Why be so stubborn and not just go on insulin ?  It would have been the smarter thing to do since these oral medications do have many side effects.  This path has led me to finding out some answers.   As I kept searching for answers and studying the idea that Metformin alone never changed my blood sugar levels and the only medications that worked were the sulfonylureas like Starlix and Glimepiride.  I kept searching for answers. 

Several years ago I had come across some information on MODY, Mature Onset Diabetes of the Young.  I never pursued looking deeper into this because it can only be diagnosed through genetic testing which is expensive and my insurance wouldn't pay for it.  The more I talked to people in the DOC (diabetes online community) the more I realized I really don't fit into the type 2 category.  I knew that and have known that but I even tried to make myself fit.  I don't fit!!!! 

In March of this year I decided to look further into MODY.  As I kept reading information on it and realized that because of the strong family history of Diabetes it was possible that I didn't have type 2 and had type MODY.  In my search and talking to people I found information on Kovler Diabetes Center that does the genetic testing for free.  I kept hesitating in pursuing this angle and didn't discuss it with anyone, including my husband for several weeks.  Finally I decided that I had to pursue this.  In March I discussed the possibility of me having type MODY with my Endo. I am thankful that he was aware of this rare type of Diabetes and listens to me and my concerns.  As we were discussing my strong family history of Diabetes and my current medication and why it was working, I saw the light go on in his head.   He urged me to pursue it.  So I did.  At the end of March I contacted Kovler.  After reviewing my case they definitely thought it was highly probable that I had type MODY.  In May I submitted my DNA for genetic testing.  I am still awaiting the results.  Since that time my doctor has changed my diagnosis from type 2 Diabetes to unspecified or unknown type of Diabetes Mellitus, unspecified type of MODY. 

MODY is a monogenic form of Diabetes that effects the signaling of insulin to be produced or used.  This genetic defect is passed down through each generation.  If passed down to the child the child has a 95% chance of developing Diabetes.  In my family we have determined that the female passes down this genetic defect to the female and male child.  The male passes down this genetic defect to the female child only.

I will continue to find answers for myself and my family, in memory of all of my family. 

Not only have I chosen to do this for myself and family, I am determined to help as many others as well.

Over the years I have seen Diabetes not talked about to now becoming almost a household word.  It seems as if the seriousness of type 2 Diabetes has diminished.  Type 2 has always been known to be a genetic disease.  A person has to be genetically predisposed to develop the disease.  In the last ten years now all we hear is that it is caused by lifestyle, being overweight and sedentary.  We don't hear much about it being genetic.  People are now being told it can be reversed or cured.  Just lose weight, change your lifestyle and you are good to go.  Pharmaceuticals are being called evil and the goal should be to get off of the medication.  With all of the readily available information and the awareness of Diabetes we are even more unhealthy and seeing more Diabetics with Diabetes related complications than ever before.  You would think that we would be going in a better direction than we are. 

All of this talk and suggesting that everything in moderation is okay, and no need to avoid sweets or that treat you want, don't deny yourself, you can be normal and eat what everyone else does, angers me.  We have been taken down the wrong path.  I truly believe that.  Especially when I look back to the "strict" days of what a person with Diabetes could eat and could not eat.  That part they had right.  With the tools we have now, the meters, pumps, different insulin and carbohydrate counting we should be seeing people with less complications, but we are not.

Diabetes is a serious disease.  I have know this from an early age.  I have seen Diabetes take many family members and friends.  When I think of my grandma and mom it is hard for me and I mourn them.  I miss them and I cry thinking of them.  I cry thinking of my grandma and how hard she tried.  I cry thinking of mom and how she felt responsible for "giving" me Diabetes. 

In the middle of me writing this I got a call from my father in law telling me that a family friend of our has died due to Diabetes complications.  Sandy was only 57 years old.  Tragic and heartbreaking.

In memory of my family, friends, and now Sandy and all of those I do not know, I will continue to educate, encourage and support and speak out, I will never give up fighting the fight. 

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