Guest Post: Newly Diagnosed

Posted by on Sep 5, 2013 in Diagnosis Stories, Guest Posts | 2 comments

A guest post by Craig Thiebaud who recently got diagnosed with diabetes. He has a culinary degree from the International Culinary Center, and I certainly hope this won’t be his only post on The Type 2 Experience. —Bea

My life with Diabetes

I recently broke my foot and it was such a bad break that surgery was scheduled.  Already mad at myself for clumsily falling down a couple stairs, I had to do a myriad of things to get ready for the surgery…including a blood test.  The next day, I had to get x-rays and the results of my blood work so I went to the doctor for the third consecutive day.  To my shock, my blood work was a shambles.  My A1-C was 8.3, I had high cholesterol, and my blood sugars were through the roof.  Then, I was first diagnosed with type 2 diabetes.

The doctor went through all the things I should avoid, the medicine I should take, the home monitoring system, etc.  It was all a blur though.  I really heard the word diabetes and then nothing after that.  I didn’t know what it all meant but I certainly knew I didn’t want it.  I didn’t know what to do or how to go about tackling what I needed to do to treat the disease.  So stunned, I left the office with a large amount of sample medication and got in my car and drove home to tell my wife, who works in the diabetes industry.

She was understanding and helped put it in perspective but it still hadn’t seeped into my consciousness just how serious this disease really is.  I started reading books and they were scary mentioning foot amputations, eye degeneration, kidney disease, etc.  So, I really started to worry and to blame myself for not taking better care of myself.  I could have dieted and exercised more.  I should been more acutely aware that diabetes runs in my family.  I knew it but didn’t think it would knock on my door.

Since then I’ve been monitoring my blood sugar every day in the mornings (fasting).  I’ve found this challenging.  The monitoring system is supposed to be easy to use but I’ve found it difficult.  I try to use the lancet and it usually does not produce blood.  I’ve found that only one finger works with the device.  Then sometimes the blood monitor itself won’t read the blood correctly and I get error messages.  I thought this would get easier but it hasn’t.  It’s really an ordeal every morning.

Today I diligently try to stay on a low sugar/low carb diet…something difficult for someone who is a chef and is used to eating and trying all sorts of exotic fare.  It’s challenging for me not to test my palate with whatever I want to eat, thus inspiring me to cook dishes from all over the world.  I’m saddened that this part of my life will have to change in either small or incrementally larger ways.   I go to the endocrinologist this week and I have a feeling that the rubber will meet the road then, and I’ll have a much better sense of what I’m facing and how to go about tackling this scary, tricky disease.

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Angry For Change: A Type 2 Diabetic’s Diagnosis Story

Posted by on Aug 5, 2013 in Diagnosis Stories | 2 comments

Most of us can remember the moment when we were diagnosed: we were at the doctor’s office; we were at the hospital; we were at home and got a phone call; etc… Time just seemed to stop. We knew our lives were never going to be the same… and we were scared.

I’m no different. I’m just like you. Perhaps even more like you, than you think. I can tell you all about that day… Or was it that week? When did it all start? You see, I can tell you exactly how and when I was diagnosed, but I have a hard time pinpointing when it all started.

I know I had been fighting chronic yeast infections — an embarrassing situation which often leaves many wondering about one’s own personal hygiene habits. The RN at the local clinic, annoyed at my continued return and my requests for more medications, gave me pamphlet upon pamphlet on how to care for, and avoid getting them… and even my husband got treated, just on the chance he was passing the infections right back to me. When nothing else worked, the RN decided, on a hunch, to test the level of glucose in my urine. I remember she came back into the room, pale as a sheet. She really didn’t seem comfortable telling me that my blood glucose was very, very high, and that I needed to visit with my PCP as soon as possible.

So, I went out to lunch, had some Subway with my husband (unaware of the role of carbohydrates on blood glucose), went home… sat on the sofa, while contemplating the Christmas tree, and then I fell asleep. Right on the sofa, and just like that. Like narcolepsy.

I went over to see my PCP, after having paid for my own lab exams at the hospital. I was simply not confident the woman was going to take me seriously, nor investigate the matter further. My fasting blood glucose was 235 mg/dL, and my A1C was 10.5%… And I was right. She looked at the numbers, and scoffed. Asked if I was sure. Asked if I had tested more than once, at over 200 mg/dL. Yes I was sure, and yes I had. I’ll never forget her poor reassurance of “Well, let me go to the American Diabetes Association website, so I can tell you what to do…”

I can tell you that, at the moment, I was very ANGRY at my PCP. You see, it was November 17 of 2009, when I was diagnosed, but I had already spoken to my PCP, back in June, regarding high blood glucose. I hadn’t been feeling well, for a while. I was sluggish, tired all the time, and hardly eating many meals. I remember that my husband said he thought I might have diabetes. I remember using his meter to test after having a meal — roughly 3 hours later. I remember the number being over 150.

I was familiar with bad numbers, though not exactly where they began. My father had type 2 diabetes, and passed away from complications from the disease — so I had an idea. I suspected this was not an okay number, and so I brought it up to my PCP’s attention. I was thinking — well, at the least, they can run a glucose tolerance test (which I had had earlier, in my youth) — and then we can know for sure.  But that’s not what happened. I was simply told the number was fine, and that I shouldn’t worry about it. “Just eat better, and lose some weight.”

I was very depressed, at the time. I had severe clinical depression. I can’t say that I had it in me to follow the doctor’s advice. I just didn’t. While I was really not eating much, the things I was eating were not the healthiest — simply quick meals one can eat, and then just go back and die on the sofa. I had been sick for a while. Back in 2008, I had developed a very big, and terrible abscess on the crease of my right thigh, and buttock. I thought it was probably from the laying so much on the sofa… but it was likely infected from high blood sugar, and my body’s inability to fight back.

But when did the depression start?

I know that I became ill in 2007, roughly around Spring. I began having panic attacks, and anxiety. I began having extreme anxiety at the thought of being at work. My job was going through a series of changes — new bosses, the company was sold, massive layoffs, etc. Between these changes, and my increasing mental health problems… I just couldn’t hang on.

For most of 2007, I had been hospitalized, and put on countless depression medications, each one stronger than the next. No one ever bothered to really check my overall health, or my glucose levels, at all… except for liver function tests. It turned out, I developed fatty liver. Fatty liver is one of the major indicators of type 2 diabetes — yet no one thought to check my blood glucose, in any way. They still kept me on the dangerous medications I was on — until I had a massive seizure at my desk, which was one of the final straws that lead to my dismissal. In Fall of 2007, having exhausted my Family Medical Leave, my employer let me go… and I was no healthier, and no better than I was when it all started.  I saw myself as a broken vessel. Shamed, and broken, and never able to work again. I got, and lost, many jobs after that — never able to quite hang on to my own mental health.

But did I have any signals before my depression ensued?  Yes… Back in December, of 2006.

I was under the care of a different PCP, at the time… and I remember I was having chest pains, and palpitations. The doctor ran a series of tests, including a stress test, and a fasting glucose test. All the tests found nothing, but my fasting glucose was 143. I was told I was fine. No one ever told me I could have diabetes, nor that there was anything wrong… In fact, they never sent for a single follow up test. It never dawned on me that it was a bad number, until one day, a few months after my diagnosis; a few months after I had gained knew knowledge… I was looking through my old medical paperwork, and I found the tests.

I was very, very angry… I can’t tell you how betrayed I felt. I got seriously ill, and I could have developed all manner of complications. It’s only by chance, and luck, and my decision to tackle my diagnosis right away, that I’ve fared so well. But it lead me to believe that something was seriously WRONG with our medical systems if so many red flags went up and none were investigated. I  hear stories like mine all the time… and they are one of the driving factors behind my desire to advocate, and blog.

Nowadays, I keep looking back… back into my history: where did it all start? When did all the dominoes begin to fall?

As a child, I used to be thin and active. I was a happy child. But one day, I began to gain weight, my hair lost it’s luster, and I developed darkened patches around my neck, my knees, and my inner thighs. My growth became stunted, and I never grew past 4’9″ tall. Puberty made a mild appearance, and then took off. My period came, and then left, never to return on its own. I lost all energy, and after years of blame from my parents, I was eventually diagnosed with Polycystic Ovarian Syndrome (PCOS), and Hypothyroidism, at the age of 15.

For years, I thought those conditions were my fault, my own doing; that I made myself fat, somehow. The negative interactions regarding my health, between my mother and I, lead to binge eating disorder, which aggravated my weight gain. I made myself sick between dieting, deprivation, binging, and guilt cycles… But a new age was dawning — the age of the internet — and in 1994, armed with new information, I learned a lot more. PCOS is one of the most common, reproductive endocrine disorders, which can affect a woman of reproductive age — anywhere past the age of 7. Little is known about the condition, except that it is suspected to cause hyperinsulinemia (a mass production of insulin), which can then lead one’s ovaries to enlarge, and fail at releasing eggs. It can also lead to massive weight gain, insulin resistance, high cholesterol, high blood pressure, and type 2 diabetes.

I can’t say for sure that it was just ONE factor which lead to my diabetes — I’m sure family history, genetics, ethnicity, depression, weight gain and the hyperinsulinemia from PCOS, were all contributors. But I can tell you something… I did not bring this on myself — and neither did you.

And while I still struggle, and I am far from perfect, and while I fall a lot… I get back up. I get back up because I’m angry… and I am angry enough to change the one person in the world which I can change… MYSELF. I do it for my father, I do it for my grandfather, I do it for my friends and my family. I do it for you… and I do it for me. And you can do it, too.

 

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Mike’s Diagnosis Story

Posted by on Aug 4, 2013 in Diagnosis Stories | 2 comments

This is an edited version of my story that I’ve shared on my personal blog and elsewhere.

I was diagnosed with Type 2 Diabetes on Dec. 29, 2008, and Congestive Heart Failure on December 30, 2008.  The road to each diagnosis began about a month earlier.

I initially went to the doctor for what I thought was a yeast infection.  Turns out I was right, and given my weight, family history, and some other factors, the doctor suspected that I might be diabetic.  My blood pressure was rather high at the time, too.  Again, given family history, weight, etc…, the doctor decided to order a battery of tests to check the condition of my heart as well. So, after a month of testing, waiting, and worrying about what could possibly be wrong with me, my doctor called me in to share all of the results.

My A1C at diagnosis was 9.6.  My heart was functioning at 30% – 35% capacity, and there was a blockage in one of the arteries.

Hearing that I was diabetic didn’t really surprise me.  As I said, there were several factors in play at the time, as well as what in hindsight were some rather obvious symptoms.  What scared the hell out of me was when the doctor started talking about the results of the heart tests.  I had lost my father, 47, to a massive heart attack just 7 months before.  I was 24 and seemed destined to meet the same end.

After I was diagnosed, I was put on a pretty strict 1,500 calorie diet and an insane medication regimen to help both of my diagnoses.  And it helped a lot.  I lost about 40 pounds (mostly water weight) within the first few months after my diagnosis, and had lowered my A1C from 9.6 to 6.5.  That was 4 years ago.

Today, things are a bit different.  For one, I gave up on the strict diet because I felt like I was starving and depriving myself all the time.  I’m eating healthy foods and the things that I enjoy in moderation.

After trying several oral medications with limited success, I’ve switched to injectable medications.  Currently, I’m using Victoza in the morning and the long acting insulin Lantus at night.  I also have the fast acting insulin Novolog to use with a sliding scale when I need it.

I’m also exercising on a regular basis and have joined a gym.

My last A1C was 6.5, and my heart is functioning at around 47%.  Much better than it was.

Overall, I’m much healthier now than I was at the time of my diagnosis.  And so far, I’ve beaten the odds that were against me.

I would be lying if I told you that life with type 2 diabetes is a walk in the park.  It’s not.  There are days when it can be extremely difficult to manage despite my best efforts.  On the flip, there are days when things are easy going.  As with all things in life, you have to take the good with the bad.  And you do get used to it over time.  You don’t like it, but you get used to it.  The important thing to remember is that no two people experience type 2 diabetes in the same way and, as such, what works for me may not work for you.

I’ve been completely open about my diagnosis from the beginning.  Family, friends, my employer and coworkers, you name it.  They all know.  I’m not ashamed of it, so why hide it?  I even started a blog, www.mydiabeticheart.com, to tell people what it’s like to live with type 2 diabetes and congestive heart failure.

Of course, I’ve gotten a lot of the annoying, uneducated reactions that people diagnosed with any type of diabetes receive.  From comments about my weight to eating too much sugar, I’ve heard them all.  Ultimately, telling people around me of my diagnosis was a matter of safety.  At least one person around should know about it and be able to help in the event that I have a problem.

It’s important to remember that I can do anything that my friends can.  Sure, I may have to plan for meals and make adjustment here and there to fit my needs, and I may need to take a break and check my blood glucose while out, but I can still do anything my friends can.

Just make the most of the life and health that you have.  Live each day to the fullest, take care of yourself.

There is great life after diagnosis.  Live it!

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Dr. P.’s Diagnosis Story

Posted by on Aug 2, 2013 in Diagnosis Stories |

I felt on top of the world in January 2011. I had just graduated from Penn State with a PhD, completed my first semester as a university Professor (my dream profession that required 11.5 years of college), and I was working out five days a week (on the path to getting below 200lbs, a long-term goal that I put aside to complete the dissertation). I shed 10lbs in January and was eager to see what February’s results would be.

Unfortunately, things got very strange in February. I was losing weight RAPIDLY! In 10 days I had lost 22lbs and was frantic because I knew it couldn’t be from working out because I was suddenly too tired to make it to the gym.

I was also extremely thirsty and urinating a lot. I didn’t think my level of thirst was normal, so I went to a physician (it was our first meeting since I was new to the area). She reassured me that my thirst was due to excess exercise caused by working out five days a week, my electrolytes were off and since I only drank water I needed to “Drink Gatorade,” she said.

But after a week of drinking Gatorade and other sugary drinks, I knew that something more serious was wrong with me. By the following week, I sat in the rear of the church on Sunday because I couldn’t get through service without going to the restroom; my vision was blurred; I lost my appetite; my lectures were interrupted because I couldn’t recall information accurately; and the fatigue was overwhelming.

On Valentine’s Day, I was so exhausted that my co-workers, having seen the ill look on my face, insisted that I go home and rest rather than have office hours. On my way home, I fell asleep at a couple of traffic lights. The car horns that honked behind me broke the slumber and I drove to the next light. When I arrived home, I walked into bathroom, ran a hot bath, and sat down in the tub hoping that the warm waters would rejuvenate me.

I passed out.

I awakened hours later in a daze. I was scared. But I didn’t call anyone and I lived alone. I decided that in the morning, I would pack a bag, go back to the physician, and not return home until someone told me EXACTLY what was wrong with me. Thankfully, I woke up the next morning. I explained to the physician that her suggestion to drink Gatorade had only caused me to get sicker. She pricked my finger and stepped out. Her assisted whispered, “Your glucose didn’t register and that’s not a good thing.”

“WHAT? What in the heck does that mean?” I called my mom (a nurse). When the physician entered the room with a needle in her hand, my mother was on the receiver demanding that I “go to the emergency room, NOW!”

“You’re not a case for the emergency room because you’re not in a lot of pain. If you go, you’ll have to exaggerate your pain scale,” the physician replied when I said that I was going to obey my mama and go to the emergency room. “Let me give you this shot before you go and tell them your pain is 10 out of 10.”

“I am going to go. My mama said ‘go.’”

Unable to stand on my own, I called a co-worker to take me to the hospital. By the time I got there, I required a wheelchair and I had forgotten all about “exaggerating my symptoms.” Plus, there was no need to; within 20 minutes I heard the following words “Your glucose is 593. You’re on your way into a coma. Get her in the back stat. She needs an IV. How long have you been a diabetic?”

Taken while waiting in ER“What? Never. I’m not a diabetic.”

“With a glucose reading of 593, you’re a diabetic now! And, if we don’t get that number down quickly, you will go into a coma.”

“I’m not a diabetic, I don’t even know any diabetics. I’m just very tired. A coma, Really?”

“Really!”

I was admitted. I spent the next six days in the hospital crying, being confused, scared, and feeling more alone than ever. At 31 years old, I became the first diabetic in my family (and I’ve taken both of my family trees and shaken them upside down. Since people claim that genetics is such a huge factor, I thought that I would surely find someone. But 4 grandparents, 11 uncles, 3 aunts, 2 parents, and 1 sibling later, I’m still the lone diabetic). I had also been getting routine blood work tested every six months for the previous 5 years as a graduate student (as I had elevated cholesterol). Since people also say that the majority of diabetics were pre-diabetic before their diagnosis, I ordered my medical records from Penn State to check.  I had two A1C and fasting glucose results each year for past 5 years, including the last one just six months prior, but all my tests were normal. No sign of elevated glucose anywhere.

As if that wasn’t enough, two months later on April 16th, an EF3 tornado destroyed my apartment complex.

Screen Shot 2013-08-01 at 12.06.31 PM

Today, I am med-free and manage diabetes with diet and exercise. My journey of passing out, being on the brink of a coma, having a tornado karate-chop my home, and ditching all medication within eight months is the reason why my motto is Diagnosed NOT Defeated.

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Bea’s Diagnosis Story

Posted by on Aug 1, 2013 in Diagnosis Stories | 2 comments

My first glucose meter.

My first glucose meter.

I have been overweight all my life. I never ate more than the other kids, I was as active as the other kids, and my mom really watched our diet. I remember I was 8 years old when I saw a weight-loss doctor for the first time; I don’t remember much, but my mother says it was a total disaster. Imagine seeing your 8-year old kid taking weight-loss pills… she didn’t know better, she thought he was helping. She pulled the plug when she realized the treatment was making me depressed.

When people saw me, they immediately told my mom “She’s so cute. I’m sure she will lose the weight when puberty comes.” It didn’t, it got worse. My body never felt normal, I had a late menarche, I was always irregular, my periods were extremely painful and messy, and my weight kept on going up.

In 1995 I went to see an endocrinologist who diagnosed me with hypothyroidism, so I’ve been taking levothyroxine since then. In 1999 I was diagnosed with a benign pituitary tumor and PCOS. Things were rough, I was young, I was getting married, I wanted to have children, I couldn’t conceive. Being treated for my prolactinoma and the PCOS led me to an endocrinologist in Montreal, where I was living, and during one of my visits this is how the conversation went:

Doc: What are you taking for your thyroid?
Bea: Levothyroxine, 200mcg
Doc: And what are you taking for your hyperprolactinemia?
Bea: Cabergoline, 0.5mg
Doc: And what are you taking for diabetes?
Bea: MY WHAT?

Yes, I had no idea I had diabetes. I had no symptoms, no previous abnormal results… I did have a history of diabetes in the family, and my dad had passed away the year before due to heart complications, so it wasn’t a huge shock for me. The shock was not knowing that I had it, and wondering how long I had it for.

To this day I don’t know what my initial numbers were, but I remember I met with a CDE right away, who explained to me how to use my glucose meter, what the metformin was going to for me, how diabetes works, how diabetes affects your body, etc. I don’t remember her name, but I will never forget her smile and the fact that she told me things would be OK.

I wasn’t really scared; I think I was more disappointed than anything because being diagnosed with type 2 diabetes at age 26 makes you feel REALLY guilty; especially with my history of hormonal imbalances…. I blamed it all on being fat. But that’s a story for another post.

My diabetes didn’t come alone. I deal with a completely messed up endocrine system, and I’m still struggling with my weight. But I do the best I can with what I have. I know my diabetes is not an isolated issue, I know it’s correlated to others, I know the odds and ends, I know how PCOS causes insulin resistance… I know all that. And it helps me to work on the guilt. Sometimes the body just needs a little bit of extra help.

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Sue’s Diagnosis Story

Posted by on Jul 31, 2013 in Diagnosis Stories | 1 comment

This is an edited version of a post from my blog written in 2009.

I had gestational diabetes with all five of my children, born in 1993, 1996, 1999, 2001, and 2004. As a result, I’ve been researching diabetes as it relates to me for over 20 years. During my second pregnancy, I found out the test for gestational diabetes was actually a screening test to see who would become Type 2 later on in life. It wasn’t until after that they realized that women with elevated glucose levels during pregnancy had certain complications. Large babies with underdeveloped organs is the one that stands out the most in my mind. Knowing that my odds of becoming diabetic because of having gestational diabetes *five* times were high, plus having a family history (my mom is diabetic as was her father), I knew that it was almost certain that I would become diabetic. I accepted that, but tried to hold off the inevitable as long as possible.

Although I was never really into exercise, I was never overly overweight. Yes, I could stand to lose a few pounds, but I didn’t look like the diabetes poster adult. In late March 2008, I went to the doctor with knee pain. He wanted to run some blood work, including an arthritis panel. Since my appointment was early and I hadn’t eaten breakfast yet, I asked him to all do a fasting blood test and

A1c. Three days later, my doctor’s nurse called me to tell me that I had Type 2 diabetes. My fasting glucose was 129 and my A1c was 6.9, not dangerously high but high enough for the diagnosis. Typically a diagnosis is made after two fasting tests of 125 or higher, but given my personal and family history my doctor and I didn’t feel the need for a second test.

Luckily (or not), because of my previous experience with diabetes, I felt like didn’t go through a lot of the normal emotions that most diabetics go through when they first get diagnosed. I knew it was coming. I was just hoping to wait a few decades. There are days that I just would like to say, “Ok, I’m tired of this diabetes thing. Where do I go to send it back?” Unfortunately, as we stand now, there’s no cure. Once you have diabetes, there’s no giving it back. It’s yours to keep forever and ever.

UsedToHaveDiabetes
That is totally not fair! Last year I got a new pair of shorts that were too big. I could take those back! We opened a package of hamburger one night that smelled bad. I got to take that back! Why can’t I take this diabetes back?

So what can I do? I can help raise money and become an advocate so that maybe they’ll find a cure in my lifetime and I can give back my diabetes. Maybe I’ll have the peace of mind knowing my children won’t have to test their blood sugar, watch carbs, or avoid eating a whole bag of M&Ms in one sitting when the mood strikes them. I don’t know if it will happen, but all I can do is try!

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