The Jagged Edge: March 2009

UPDATE:
Just learned that everyone is now communicating and I've been pre-approved for the OmniPod. Yea! More to come...
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In the past, diabetics had to constantly fight for their care, e.g. battle insurance companies for coverage, battle doctors for more supplies, battle both to play nicely with each other. In many cases, this similar activity goes on today.

My parents had to fight for insurance coverage for me. And God help me if my diabetes prescriptions ever changed. Personally, I have fought insurance companies and some doctors for increased blood glucose strips, long before the DCCT [Diabtes Control and Complications Trial] was ever published.

In 1999, I successfully fought for an insulin pump. And yet throughout the years, I've learned to communicate very well between different parties. Right now, I'm communicating between three parties: my doctor, my insurance company, and the Insulet Corporation--makers of the OmniPod.

The great news is, the insurance company and Insulet are getting along very well. Strange news is, my doctor's office and Insulet are miscommunicating. I find this strange due to how strongly my doctor wants me on a pump, but the office just can't get things right with the pump maker. Go figure, right?

Guess who now has to steer the ship? Yeah, another day in our lives as diabetics. However, the fight goes on...

I wrote this back in 2006 as a series of blog posts. I have made updates along with repairing grammatical errors.

My Life as a Diabetic: A Short Story of My Diagnosis, Life, and Encouragement for Others
by
Mark Mansheim

Preface
On December 19th, 2008, I celebrated having Type 1 insulin-dependent diabetes for 32 years. I will turn 40 in April. I am reminded every day how truly blessed I am to be living with a treatable disease. In addition, I was diagnosed over a year ago with proliferative diabetic retinopathy. This "disease" hit me without warning. Thankfully, my opthamologist has done terrific work with my eyes. I have hope that, with proper eye care and diabetic treatment, my eyesight will be fully restored.

I have recently started stationary biking 10 miles a day to get back in shape; for both diabetes and body-wise. The effort is paying off. I am losing weight and feeling fantastic.

Lastly, never give up. Don't succumb to a negative attitude. Don't let fools steer you off course. Find support from people who understand. Lastly, please know that there is a God who loves you, not as you're supposed to be--because you will never be perfect--but as you are.

Chaper 1: The Wrong Diagnosis

This series of stories details my diagnosis and life with insulin-dependent diabetes. In short, I’ve been a diabetic for almost 30 years. I will be celebrating my 30th year of diabetes in late December of this year. My diagnosis is almost 30 years old, so the details are a little fuzzy. I will do my best to recall what happened.

In early December, 1976, I was a seven year old boy living in Monroe, Wisconsin. I was in the first grade. As I recall, I began feeling as if I had the flu. I began vomiting and couldn’t stop. My parents tried everything they knew to control this “flu”, which included drinking broths and clear fluids. My pediatrician believed I had the flu as well, and recommended more fluids. It would just have to run its course.

The vomiting didn’t stop; it got worse. I couldn’t even keep water down. I recall my parents taking me to the emergency room of St. Clare Hospital in Monroe.

Immediately, the ER personnel must have seen that I was dehydrated and administered an I.V., which probably contained some form of glucose. I subsequently went into a coma.

Now I could go into details of what happened to me while I was in the coma, including a near-death experience. But I’ll save this for another day. Yes, I was briefly in Heaven. No, God wasn’t ready for me at that particular time.

During this time, my pediatrician was baffled as to what was happening. I was unresponsive and my veins had collapsed. The only thing he knew to do was to contact an old friend of his, who was a pediatric specialist, at the University of Wisconsin. (Go Badgers! Sorry... I had to get that in.)

This doctor came straight from Madison, went over to my bed, smelled my breath, and immediately knew that I was in a state called, “diabetic ketoacidosis”. My parents witnessed this firsthand, so that is where I get most of this account.

I pulled out of the coma during a surgical cut-down on my vein, in my right ankle. I still have the 3” scar to prove it. According to the doctors, they had me awake briefly during the procedure to monitor my consciousness. It was here that I experienced my second “heavenly” encounter, but the details can wait. All in all, I was in a coma for almost a week.

The specialist who diagnosed me with diabetes told my parents that the insulin producing cells, in my pancreas, were gone. He was going to try a new procedure, by injecting large amounts of insulin in me, in an attempt to revitalize some insulin production in the pancreas. Suffice to say, it didn’t work. But, the insulin worked wonderfully.

For the next five days, I was poked, prodded, and forced to eat foods that would gag a bear. The blood testing occurred every 15 minutes including vial draws every hour. For a meek 7-year old, this was very traumatic. I wailed, constantly. My parents told me that everyone, including the Catholic priests that prayed over me, wept and often left the room in distress. I was being raped by a disease that no one could take away.

The blood draws happened in the early morning hours as well. Two nurses would come in and hold me down while another drew blood. I was in hell. There are really no words to describe the actual pain and horror that took place.

After a week of this testing, I finally stabilized. I met with my diabetes specialist and dietician to begin understanding this disease. Basically, I would now need insulin to keep me alive for the rest of my life. My diet would need to change as well. No more sugar sodas or sweets. Life was better for a time. I became more tolerable to the pain and even met Santa Claus while in my hospital bed. You can only imagine what I wanted for Christmas.

It was now December 23rd and a crucial decision had to be made: Christmas was just two days away and my doctor spoke to my parents about letting me go. But first, they had to learn to give me insulin shots.

I remember a nurse handing my father a syringe and an orange to practice administering insulin. He was very distraught. I told him it was going to be all right. After his practice on the orange, I was next. My father is one of the toughest men I know. This was the first time I saw him weep. My dad passed the test to allow me to go home. Two days later, I celebrated Christmas in my home.

Chapter 2: Encounters with Diabetes

I believe children with diabetes encounter more personal battles, than adults with diabetes do. I had my fair share.

When I was ten, my parents and I learned the difficulties of the flu virus. The flu and diabetes do not get along. In 1980, there weren’t too many diabetic ‘tools’ to help keep it under control with the flu (portable blood testing or small insulin pumps). And, therefore, I would dehydrate and wind up in the hospital.

On this particular occasion, we were living in Denton, Texas and I had two (not just one) excellent pediatricians. It was late February and my parents were taking me to the emergency room for fluids. I was cramping really bad, due to the high blood sugars. To alleviate the pain, the ER physicians gave me codeine through my IV.

Unbeknownst to all of us, I was highly allergic to codeine. I broke out in hives and began vomiting all over again. Needless to say, I had to spend the night in the hospital to stabilize.

During the night, I was told my regular pediatricians were out of town and they had just hired a new doctor to join their group. He came into my room, introduced himself, and wanted to give me a large dose of Regular insulin to cover my last high uring sugar readings. His nurse already had the syringe drawn up.

By this time in my short diabetic life, I knew I was a little sensitive to Regular insulin. Large doses were NOT recommended to me. So upon hearing that this new doctor wanted to give me a large dose, I disagreed with him and I requested to call my parents (who had already gone home for the evening).

In short, my dad did not take this news kindly at all. He informed the new doctor of my insulin sensitivity and told the doctor that I should be given a smaller dose. The doctor, apparently wanting to show his authority, argued with my dad. Not a good move on his part. My dad told the doctor that he was coming back to the hospital and they would discuss the matter further. According to my mother, this was my dad’s way of saying, “I’m coming to kick your butt, so you better watch out.”

As you can tell, I didn’t receive the large dosage and had a great blood sugar reading the next morning. I went home afterwards. Subsequently, the new doctor was severely disciplined for his behavior and told never to treat me again.

Diabetics face battles similar to this one every day. But ignorant doctors aren’t the only trouble-makers. Insurance companies and school nurses can cause just as much, if not more, trouble for insulin-dependent diabetics.

Chapter 3: Insurance, Nurses, and Diabetes… Oh My!

Before the “Americans With Disabilities Act”, diabetics were told they wouldn’t be covered by insurance companies due to their, “pre-existing condition”. This verbiage says that, since you were born with this disease, we can’t nor won’t help you treat it. Depending on what state you live in today, insurance companies can still turn you down using the pre-existing condition clause.

It’s 2006 and you would think insurance companies would give just a little, right? The “Americans With Disabilities Act” allowed states to override insurance companies who turn you down. The state of Georgia is one of those. However, the state cannot set the costs to the patient. So, insurance companies can rake you for your disease. As a diabetic, I can be charged as much as $5,000 a month for insurance coverage. Sad, isn’t it?

Insurance coverage is a strange beast. They can be your best friend or your worst enemy. One minute you’re covered, the next you’re dropped faster than a brick off a bridge. Coverage can mean paying enormous co-payments for necessary diabetes supplies or paying very little. Lack of coverage can mean a person cannot ably manage their diabetes. Therefore, this may cause complications in the future.

Let’s move on to school nurses, shall we? School nurses are wonderful for treating a child’s minor cuts, scrapes, and bruises. They can even contact parents if a child is experiencing a fever or stomach virus. But add “diabetes” to their daily grind, and they run into trouble.

Back before the days of diabetes education, thanks in large part to The American Diabetes Association and Juvenile Diabetes Research Foundation, school nurses wanted NO responsibility in taking care of a student with diabetes. It was like having the plague. (Mark, can your disease spread?) And if school nurses made a big enough stink, they got their way.

There were a few school nurses, especially in high school and college, who were very gracious and helped me whenever I needed it.

Many states now have legislation giving protection to students with diabetes in schools. Now, school nurses MUST offer help to diabetic students. This isn’t always the case as every now and then I read an article, where a school nurse refuses to care for a diabetic student.

I’m sure students, who suffered from cancer, food allergies, dyslexia, asthma, or epilepsy, received the same lack of treatment. Battles can leave gaping wounds that take time to heal. As I became older, I relied less on school nurses and more on my ability to take care of my disease. I knew my body and disease better than anyone. My friends have all by been very supportive and sometimes enjoy the humor 'behind' having diabetes.

Chapter 4: The Insulin Pump

Throughout my active teenage and adult years, I’ve had troubles controlling my diabetes. In 1987, I began taking 4-6 shots a day to get under control. Then in 1999, I finally took the dive and went for an insulin pump.

Insulin pumps have come a long way since their inception. They used to be larger than an adult’s shoebox. The original was so large it had to be carried on the person's back. Now, they’re as small as a pager. I’ve been asked if mine was a new form of a Blackberry.

The insulin pump works similar to an intravenous pump. A small plastic needle, or canula, is inserted into my abdomen. I receive a constant flow of insulin during the day and take extra amounts when I eat a meal. I change the insertion site every 3-5 days. The only complications I have are when I swim for a long time or profusely sweat; then the insertion comes out. All in all, it beats taking 4-6 shots a day.

My A1c, or average blood sugar levels, have improved as well. I range from 6.8 to a 7.0, which is personally fine for me. I don’t hold firm to the belief that a lower A1c is the best, e.g. A1c levels below 6.0.

I use a Medtronic Minimed Paradigm 511 and generally take 35-40 units a day. When my blood sugars run low, I temporarily suspend the pump. And speaking of blood sugars, I test my blood sugar 5-7 times a day. I use a Lifescan OneTouch Ultra as my blood machine. It only takes 5 seconds.

Every now and then I’ll meet someone wearing an insulin pump and talk them about it and their diabetes. Many diabetics are very conscious of their pump and are quiet about it. I have known a few diabetics who, out of fear, don’t want their disease made public. As much as I find this sad, I understand their choice.

What does the future hold for insulin pumps?

Word has it that Medtronic Minimed is working toward an insulin pump AND blood machine together. I don’t know if I particularly care for this type of machine, but I’m impressed that companies, like Medtronic, are trying to make the lives of diabetics better.

Chapter 5: Bitterness and the One Who Saved Me

In my late teens and early twenties, I experienced deep bitterness toward my diabetes. I had friends and family who understood my resentment. I mean, how do you really console someone with a disease?

As a young adult, I wanted to be a police officer or federal agent. I wanted to be someone who made a difference in society and fight the bad guys. But, alas, it wasn’t meant to be. There were too many restrictions against diabetics at that time. (Not anymore.)

I was also short and stocky. I had to work out double-time to get in shape and try to prevent low-blood sugars (hypoglycemia). The martial arts were a big help in this area.

However through all this (family, friends, and exercise), I was still bitter. I had even met other diabetics, who said my diagnosis was unique, and they completely understood my bitterness. As much as I loved their friendship, I was unwilling to let bitterness go.

Not only was I bitter, but angry as well. I could get angry very fast. During these troubled times, it didn’t take much for me to go over the edge. I was irresponsible and sometimes, uncontrollable. If someone were to chide me or start trouble, I would finish it.

Thankfully, I’m not that way anymore. So, what happened to me that relieved the bitterness?

Easy, I met Jesus the Christ.

I met Jesus through my oldest son (who was almost 3 at the time) and long story short, I laid my bitterness at His feet. Now when I have a bad day with my disease, and occasionally I do have them, I try to calmly take care of it and let the anger go.

God, and His Son, understands me better than I do myself. I believe God works wonders everyday that we fail to see. He alone gives me the ability to be a loving and honorable husband, and loving, grace-filled dad.

Diabetes is still a priority in my life. I take my health seriously. I still love a good double cheeseburger, bratwurst, and a bite of chocolate, but not as often as I would like. I believe in moderation, not overconsumption. I love Diet Wild Cherry Pepsi, Diet Mountain Dew, and drink 60 ounces of water a day. I’ve learned to love cycling and what it does for my body.

Chapter 6: Words of Encouragement

In my almost 30 years of diabetes, I have met diabetics from all over the world. I've seen how most people handle their disease with great attitudes.

I have seen…
- Fellow diabetics do great things, e.g. local and federal law enforcement, tri-athletes, and adventurers
- Babies with diabetes, grow to be teenagers who are very, very responsible with their disease and do great things
- The tragic results of complications due to neglect. Most have blindness, heart disease, and amputations

For every story of neglect, there have been stories of triumph: Stories of people with diabetes climbing large mountains, winning Olympic medals, becoming great physicians, or great parents. There is no end to the possibilities.

Lastly, I’ve counseled a number of folks initially diagnosed with diabetes. I’ve been to hospitals so many times, that I don’t care to remember them all. None of those affected me as much as seeing my own baby sister, who was in her twenties at the time, get diagnosed with this disease. She went through a little hell, but all-in-all she’s doing wonderfully now.

After living with diabetes for almost 30 years, I’ve had little complications aside from an occasional infection, flu, or cold. I greatly enjoy watching my oldest son train for his Tae Kwon Do and my youngest son having such an adventurous spirit. My wife is the love of my life. She’s been through many a good and bad day with my disease. She knows that I can become quite ‘moody’ if my blood sugar is too high or too low. Therefore, I do my very best to keep my blood sugar levels under control.

I truly believe that one day diabetics will be able to do anything from piloting the space shuttle to being an elite special-forces soldier. I also believe this disease will be cured. Researchers are getting closer and closer to ending diabetes for good.

But first, stay in control of your diabetes and be responsible for your choices. Do your best everyday and have a positive attitude. Sure, some days aren’t going to go your way. But, there is a tomorrow and there is a better way. Never limit yourself. Don’t ever give up!

The Jagged Edge

Wednesday, March 25, 2009

Surviving

Wednesday, March 18, 2009

UGH!

Sunday, March 15, 2009

OmniPod Status

Thursday, March 12, 2009

I'm Not Perfect!

Wednesday, March 11, 2009

Staying Motivated

Monday, March 09, 2009

Bad Diet / Bad Results

Thursday, March 05, 2009

Exercise: Day 12

Tuesday, March 03, 2009

My Diabetes Life: A Short Story

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