My Diabetes Journey

Getting Diagnosed
At the time I was diagnosed with Type 2 diabetes, I had been going to a counselor for some time. She kept poking and insisting that I go get a checkup because it had been over five years since I had the last one. I finally gave in and saw my family doctor, who ordered many tests and flu and pneumonia shots.

After a few days, the lab results came in, and on September 11, 2018, I got a call from my family doctor that I had been diagnosed with type 2 diabetes. My initial response was shock and fear. I barely remember the rest of the phone conversation. Still, I was coherent enough to make an appointment so the doctor could review the results. The next few days are a blur of anxiety, with my mind going at a thousand miles per hour, asking a million questions.

I know myself well enough that when I get like this, I always resort to “books” (doing research) to answer my questions. Since I knew practically nothing about diabetes except the name of the illness, I ordered some “For Dummies” books to start my research. I knew that these books would not be the most accurate. Still, given my lack of knowledge, it was an excellent place to start since this series of books specializes in explaining things as simply as possible.

From my perspective of almost total ignorance, the book had a lot of good information and easy-to-understand explanations of the medical terms. It was written by a doctor specializing in treating diabetes patients. He had struck the right balance between straightforward explanations and thorough coverage of the subject matter.

Although I learned a lot from the book, it also left me with many questions. The book explained the issue of self-care, but I did not understand its implications. I remember reading about this and not giving it a second thought. To me, self-care meant that I would be doing much of the care in partnership with the doctor. Boy, was I wrong! More on that later.

For all diabetics, the diagnosis means that life as you know it has ended. After the initial shock wears off and you get accustomed to the medication routine, you have a life to live, but you cannot live it as before. By this time, you are at the point where you are asking, “What do I do now? How do I live now?” This is when the healthcare personnel should tell the patient that it would be a good idea to get psychological counseling from a counselor specializing in diabetics. Unfortunately, that does not happen, and even if the patient knows that they need psychological help, you really have to dig deep to get information about counselors who specialize in diabetic patients.

So, what does life look like after the diagnosis? The short answer is developing routines and planning ahead – sometimes three to six months ahead. What do I mean by this? You have to set up and get used to the daily routine of taking your medications. Then you have to plan what and where you will eat because you have noticed that almost all prepared food has severe amounts of carbohydrates. Then, there is the planning ahead for all the doctor’s appointments every three to six months, depending on your condition. If you were not accustomed to planning before your diagnosis, give yourself time to adjust; this is a big and sometimes aggravating change.

Information Frustration
Those first months after I was diagnosed were incredibly frustrating because no one would give me a straight answer. I could not understand it. I was the patient, and the doctors and nurses alike were reluctant to explain anything. It would be over a year before I could connect the dots about the real meaning of self-care.

One of the things I really wanted help with was my diet. I am a total klutz in the kitchen, so I sought detailed help with recipes. I was totally disappointed with every dietitian I talked to. All they did was go over a two-page list of foods I should or should not eat and the average amount of calories and carbohydrates I should intake daily. It was a complete waste of time.

One of the things that the health care industry offers is education on diabetes, at a cost of about twelve hundred dollars. I paid for the course, which had a lot of good information that answered some of my questions. Unfortunately, their information differs significantly from what the doctors and nurses tell you. I spent a great deal of time walking around confused, angry, frustrated, and very anxious.

Let me tell you about an example that I will always remember. The training tells you that, as a person with diabetes, you should check your blood sugar level when you get up in the morning, immediately before and two hours after every meal, and when you go to bed. That would be a total of eight daily blood sugar checks. On one occasion, I went to my endocrinologist, and the nurse told me they only needed two checks, one in the morning and one in the evening. I asked her, “If I do that, how would I know what is happening during the day?” she just responded, “We don’t need the extra checks.”

Concerning the diet requirements, the course and the dietitians agreed that I should eat about twelve hundred calories daily and 40 to 65 grams of carbohydrates daily. I tried doing that, but my blood sugar level did not go down, and I did not see any weight loss, even with exercise. I tend to be a rule-follower, so when I follow them and things do not work, my anxiety and level of frustration go through the roof.

Over and over again, I hit this wall of non-information, misinformation, or outright wrong information. Nothing I was told was dependable or accurate. I was going out of my mind because I still thought these were “the professionals, the healthcare people.” Out of necessity, I slowly came out of that mindset and accepted that I was on my own. I needed to find and vet the information by myself. How do you do that when you are in a place where you do not know what you do not know?

It did not matter; I would have to do it because I was not getting anywhere with the “official” literature and the answers I was getting. With my level of ignorance, my research was more of a “shotgun” style. I would do a general search in Google and get anything and everything I could, whether it was pertinent or not. It has taken a long time, but I have finally learned to hone my searches to fit my situation. However, that does not change the fact that I deeply resent the healthcare because I feel that they have abandoned me in my hour of need.

Research
At the same time that I was going to the different doctors and training, I was doing my own research so I could understand. As I said, I started by reading a “for Dummies” book about diabetes. It helped me understand the illness. I understood the medical terminology, its significance, and how to manage it. After I read the book, I felt less overwhelmed, although I still had a lot of questions.

One of the reasons I was so desperate to get as much information as possible and to get a second opinion was that the physician’s assistant who worked with my family doctor had prescribed me a medication that helps stimulate the production of insulin. More than once, my sugar levels dropped dangerously low, once it was down to 44, due to this medication. Emotionally, I was freaking out, and I needed help badly. When I finally visited the endocrinologist and told him what was happening, he increased my dose of METFORMIN and took me off of GLIMIPERIDE.

I have told you the details of this story so you can see how different your treatment can be from doctor to doctor. While I was very relieved to be taken off of that medication, my trust in the medical community was almost completely shattered. As a result, I became highly motivated to learn everything I could about diabetes and its treatment. After reading the “For Dummies” book, I searched high and low on the Internet and quickly found the ADA site (American Diabetes Association).

I dove into it like a starving man finding food for the first time in a long time. I went into every corner of their website and read everything I could, including the scientific articles and papers. In the process of Googling for information, I found websites that aggregate scientific articles about all manner of topics. Somewhere in this process, I found an article that discussed restricted diets for type 2 diabetics. The gist of it was an experiment where patients with type 2 diabetes ate a diet that only had about 20 grams of carbohydrates and did a moderate amount of exercise (walking). They had excellent results controlling their blood glucose – scientists call it “good glycemic control.”

I went back to the ADA site to see if they had similar articles or studies, and sure enough, they did. Why would the ADA have high-quality studies on their website discussing good results with restricted diets but continue to recommend diets with 40 to 65 grams of carbohydrates? One more time, I was faced with information that made no sense at all to me. Mainly when so much of the healthcare industry took their information from the American Diabetes Association. I kept asking myself, what was going on?

Self-Care
Not too long after I found the articles concerning restricted diets, I came across another scientific article bemoaning self-care for diabetic patients. The article’s abstract discussed how self-care should be a partnership between the patient and the medical personnel, working together to manage the illness. It has turned out to be a situation where the healthcare personnel have stepped back and let the patient do everything. They have assumed a “you are on your own” attitude.

A giant light bulb went off in my head. Almost immediately, I could connect the dots – the prescriptions, the lack of straight answers, but most of all, the indifference on the part of the entire healthcare system. I saw it and felt it everywhere. I had never seen anything like this before; they didn’t seem to care. The reason I have had such a hard time wrapping my arms around this is that I am old enough to remember when doctors came to your home to take care of the sick; that was what caring looked and felt like. In this day and age, I was not expecting that level of care, but never in my wildest dreams would I have anticipated indifference.

Once I understood I was on my own, I started working out what worked for me. I decided to throw away “the play book” and really start looking at what worked for me. One of the first things I did was restrict my intake of carbohydrates as much as possible. Since I don’t cook, I chose to buy Atkins frozen meals. They have less than 20 grams of carbs, and the portions are right for me. From the time I was diagnosed in 2018 to 2019, I monitored my blood sugar and weight like a maniac, and it worked. Controlling my food intake and exercising allowed me to drop 40 pounds (18 kg).

Regarding exercise, I walked three miles and swam up to eight hundred meters. The result of my efforts was that my blood sugar level dropped to nearly normal within a year. It was working; I was in control! The year 2020 brought the pandemic and the shutdown, and with it, all the work I had done went out the window. I felt so out of touch and out of control that I let everything go. I was not even taking my diabetes medication. To this day I cannot explain what was going through my head. All I can remember is feeling very angry and very rebellious.

In the summer of 2021 I moved and started the road to getting my diabetes back in control. It has not been easy or very successful. I really let go of my health, and I was raging against the wind thinking “screw them all.” Don’t ask me who “them” were, I was too busy raging at everything.

New Town – New Everything
When I moved to a new, smaller town, I knew that I was going to have to start my treatment from scratch. I had to redo my insurance and get new doctors, appointments, tests, Etc. I should have counted on how different healthcare is in smaller towns than in big cities. One big surprise was when I found out that I had to go to another town forty miles away for some of my doctor appointments. That threw me for a loop and took a bit to get used to.

One thing that the new doctors did was order tests that I had never had before. Among them was a testosterone test. It turns out that my level was deficient, and this was compounding some of my symptoms. My fatigue, “mind fog,” and the times when I feel very sluggish were all exacerbated by the low testosterone. Unfortunately, it would be almost two years before I could get therapy for that.

I discussed before how I was raging against the world. Well, that got me into serious health trouble, I mean real life or death kind of trouble. If you have heard the saying, “You can’t fix stupid,” – I would have been the poster child for it. What happened is that I developed a cough and never went to the doctor to take care of it. The cough developed into pneumonia, and the pneumonia partially collapsed one of my lungs. I spent about twenty days hospitalized and had to undergo surgery to clear out the infection. I look back at it now and keep telling myself, “You idiot! You could have died!”

It has taken over a year to get all the medical issues cleared up so I can take testosterone replacement therapy. I recently started, but I noticed almost immediately that my blood sugar level is much better and in better control. While it is not in the range of a “normal” person (between 70 to 100 mg per dL of blood), most of the time, it is well within the appropriate range for a diabetic (70 – 180 mg per dL of blood). The doctor has decided to take a prolonged approach to my testosterone therapy, so it will take some time to see if it will help with my other symptoms.

The one thing I have not been doing and need to do is exercise. I used to walk two miles every day, but since the operation, I have completely slacked off. One of the issues is that summers here are extremely hot. I’m talking between one hundred and one hundred five degrees Fahrenheit (thirty-eight to forty-one Celsius). At my age, walking around in those temperatures can be very dangerous.

Weight is an Issue
In the time since I was diagnosed, I discovered that my key to controlling my diabetes is my weight. I fall into the category of people who are “morbidly obese.” My big issue is that I am terrible at controlling my weight and even worse at exercising. It is hard to admit, but I am very lazy concerning physical activity. Or am I? One of the things that diabetes does to me is give me bouts of acute fatigue. Whenever I am in the middle of a fatigue event, I can barely move or even think. It is like my mind has this “fog,” and I cannot combine two thoughts. The hard part is that there is no prediction of when these episodes will occur or how long they will last. I have had episodes that end in two hours and others that take three days.

This is my “catch-22” of diabetes. If my sugar level were in the “normal” range, I would have more energy, but to get there, I have to have the energy to work out the weight. This is the energy that I do not have because my high blood glucose keeps me “dazed and confused.” The research that I have done tells me that the bouts of fatigue, anxiety, and depression are typical for a person with diabetes. Unfortunately, the literature is less clear about how to handle it other than to say to have a sound support system.

Diet – The Hint of an Idea
After I went to all the doctor’s appointments and training, read as much as I could, and exercised, nothing happened. No weight loss and no improvement in my blood sugar level. By now, I was getting really tired of my perennial anxiety and being in a state where my mind never stopped racing or resting. I needed relief. I needed a solution that could help me live my life.

Somewhere in all that turmoil, I remembered something from the diabetes education class. The body has three significant sources of energy; protein, fat, and carbohydrates. When the body burns too many calories and does not have enough carbohydrates (the “quick fuel”), it starts using up fat. The disadvantage of having the body burn fat is that this process produces ketones. Ketones can be toxic to us if the body makes them in sufficient quantities. When the body breaks down fat, one of the byproducts is ketones, which must be flushed out of our system before they become a problem.

However, what would happen if we provided the body with just a few fewer calories than needed? The body would burn a little bit of fat to compensate. This was the idea that came to me. Why not get daily calories that are insufficient for the day’s needs? This would force the body to use just a bit of fat without risking an increase in toxic materials in our bodies. If I were to do this every day, bit by bit, I would lose weight.

I tried this in 2019, and it worked. I watched my food intake and every day, I would walk between two and three miles. I got a gym membership so I could alternate between walking and swimming. I slowly worked toward a weight loss of forty pounds (about eighteen kilos). Unfortunately, 2020 came, and with it, COVID. Everything shut down, and you could not go out, so there went the exercising.

By now (2024), I have gained all the weight I lost, and my desire to get fit has waned significantly. My logical mind tells me I must do it, but my body screams, “Hell No!” It is an ongoing battle that rages within me, and for the past couple of years, my body has been winning.

I knew I had found part of the key to keeping high sugar levels at bay; the combination of restricted caloric intake and moderate exercise. I also knew that I needed to either make or get very low-carbohydrate meals, which is my Achilles heel.

Diabetics and Genetics – Why Me?
Why me? This sounds like such a “pity party,” but the real question is, how did I get type 2 diabetes? I have done a lot of reading and researching, and I found out that two conditions need to be present to get type 2 diabetes. The first is a genetic predisposition, and the second is visceral fat.

The genetic predisposition is pretty easy to detect because all you have to do is check up on your immediate family to see if any of them have diabetes or pre-diabetes. In my case, my mother has diabetes, her mother (my grandmother) had diabetes, and three of my siblings have pre-diabetes. The thing is that I did not know about my siblings until they were in their late forties and early fifties. Since I am the eldest sibling, I was in my sixties when I finally figured all this out. Visceral fat is the fat that sticks to your organs and blood vessels, and it is usually the result of obesity. In other words, I’m very overweight.

I was raised in Puerto Rico, and as a teenager, I was as skinny as a toothpick. Knowing what I know now about diabetes, I can look back when I was a teenager and identify moments where I can say, “That was my body telling me something.” I have always drunk a ton of water, always. Back then, what I identified as hunger was a pain in my stomach. If I relate it to what I know now, I would say that the cells in my body were screaming that they were starving.

As a skinny 14-year-old growing three inches in one summer, it did not mean a lot. After all, I did not weigh 130 pounds (59 Kg) soaking wet. I barely had any body fat, and the tropical weather and outdoor activities kept me well-exercised even if I did not develop many muscles.

So, the answer to the question of “Why me?” is simple. I didn’t “get” diabetes; I always had it, but it had not manifested. It wasn’t until my early thirties that I started gaining weight, and no matter what I tried, it would not stay off. Slowly but surely, in my forties and fifties, I kept gaining weight, and nothing I did helped to keep it off. I finally gave up on trying to lose it.

Why Am I Fat?
It turns out that, for me, two significant factors keep me obese, and they are genetics and hormonal imbalance. My father, all my male siblings, and I were as thin as toothpicks in our youth. When we began getting older (over 40 years old), except for one of my brothers, we all began gaining weight. This clearly indicated that weight gain was a hereditary condition in my family. On my mother’s side, there is a history of late-onset type 2 diabetes. When the genetics lottery came around, I hit the jackpot.

It looks like I inherited the genetic propensity for weight gain and diabetes. With that comes the additional issue of weight gain due to hormonal imbalance. I have type 2 diabetes, which is sometimes called “insulin resistance.” Insulin is one of the primary hormones that control the metabolism. If it gets out of balance, it causes symptoms like constantly feeling hungry.

It is fairly easy to explain why I am fat. The more difficult thing is to figure out how to lose the extra weight. This will always be an uphill battle for me because I will be fighting my own body. My genetic makeup will fight my attempts to lose the additional fat, and so will my imbalanced hormones.

That said, looking at the past to see if any significant issues can explain the weight gain. I was raised in Puerto Rico, and as I said before, in my teenage years, I was as skinny as a toothpick. Back then, my mother cooked primarily fresh food.

The most common staples in the Puerto Rican diet are rice, red beans, some meat, and salad. Another critical point is that I usually either walked or biked everywhere I wanted to go. Eating a diet of primarily non-processed food and exercising by walking and biking was more than enough to keep the weight down. As a teenager who grew three inches in one summer, my metabolism helped keep my weight and fat in check.

During my time in the army, I went from 128 pounds (58 Kg) to about 140 pounds (63.5 Kg). This was just 14 pounds (6.35 Kg)  in seven years, so I was not worried about it. It wasn’t until I got to the United States in the early nineties that things changed. When I got to the United States in 1991, I was a single parent of a teenager. I don’t know how to cook, and in Texas, wherever you go, you do it in a car. There is no such thing as walking somewhere in Texas. Those changes, together with middle age, eventually caught up with me.