My Diagnosis: A Life Changing Experience

Hi everyone. I was asked to write about my diagnosis awhile back so I thought I would share it here as well. It will take a few minutes to read but please let me know what you think of it. Thanks

My diagnosis: Rob M

I am not sure how to put into words the feelings that I experienced when my doctor told me I was a diabetic. I have read that many people equate these feelings to losing a loved one. I would tend to agree with this comparison. In the immediate days following my diagnosis, I literally felt numb as though a part of me was no longer there. I am certain that it is a day that I will never forget and that my life would never be the same again.

I had been struggling with my health for quite some time. I didn’t really have any illnesses per se and had not spent any time in and out of doctors’ offices; I just didn’t feel “right”. The biggest of my issues was that I could not seem to get any sleep. It seemed as though my nights consisted of drinking lots of water and then urinating. It wasn’t uncommon for me to urinate 10-15 times through the night. At this rate, I was never asleep long enough to get into any deep sleep. It never made a difference how much water I drank either; I could never get close to quenching my thirst. I would get out of bed in the morning feeling as though I had never gone to sleep. This lack of rest was affecting every aspect of my life: my health, my work, my relationships, even my personal safety. I had less than a 10 minute commute to work and I found myself falling asleep at the stoplight less than 1 mile from home. I would be awakened to angry drivers laying on their car horns behind me to get my attention. It was horrible. I hadn’t had a decent night’s sleep in months and just could not take any more of it. I decided it was time to go see the doctor.

Given my family history with diabetes, I had a pretty good idea of what the diagnosis was going to be. I knew what the symptoms were and I was exhibiting most of them. The symptoms that I displayed were frequent urination, excessive thirst and dry-mouth, fatigue, irritability, itchy skin, and bruises that didn’t seem to heal. Yep, I was experiencing almost every common symptom of diabetes. I remember the nurse asked me “Why are we seeing you today?” I told her simply “I don’t feel like myself and I haven’t for a long time.” As the nurse was entering some of my personal information into the computer, she proceeded to ask what kind of symptoms I was having as if she was speaking to the computer. I cut her short and told her “I am going to make your job easy today and that you should just check my sugar”. As she looked up from the computer, I could sense that she was going to challenge me but she must have reconsidered after seeing the seriousness of my expression. Before I could even realize what was happening, she had a drop of blood on the end of my finger and directed it into the test strip. What happened in the next 5 seconds would be life changing. I distinctly remember hearing the beeps as the meter was working to determine my blood glucose level. The nurse turned to me and showed me the number that was displayed on the meter. I will never forget that number, 372 mg/dl (20 mmol/l). The problem was that I had no idea what that number meant. I asked the nurse “Is that good”? She looked at me with a puzzled look and said that the doctor would be in to see me in a few minutes.

Considering the look that the nurse had given me in addition to her tone of voice, I was assuming that the number 372 was not a good number or at least not in this case. Even though I felt like I knew what the doctor was going to tell me, I was not prepared for his first statement as he walked into my room. It is a little fuzzy but I think it sounded something like this: “Hi Rob. It’s great to see you again. I don’t want you to worry too much because I am going to help you manage your diabetes.” I was completely floored. My thoughts were all over the place. I was a diabetic? What? How? I am not sure what my initial reaction was but it must have been concerning to him. I don’t think it was a reaction that he had seen very many times before and for good reason.

Just 6 months before my diagnosis, I stood beside my mom in the hospital as she was being wheeled into the Operating Room to have her right leg amputated just below the knee. The amputation was necessary due to an infection that my mom and her doctors had been fighting for over a year and a half. They were unable to stay ahead of the infection and could not risk it spreading through the bone and getting above the knee. The only possible solution was to remove the leg to head off the infection and avoid even more serious future complications. Let me explain this in a bit more detail. One of the more serious complications of diabetes is decreased blood circulation. In basic terms, when someone has high blood glucose levels, the blood is thicker because it has to carry excess amounts of glucose (sugar) through the body. This makes it more difficult for the heart to pump the blood as efficiently as under normal conditions. The extremities such as feet and legs are at the greatest risk due to the distance from the heart and the inability to sustain necessary blood circulation through them. So for this reason, wounds or infections in these areas can often lead to serious complications which sometimes result in amputation. I don’t know how to put into words what it was like to see my mom whole one day and then missing a leg the next. It was such a helpless feeling. All three of her children were there with her. My brother, my sister, and I were all there. There was nothing that we could do but we were there if she needed us. She looked so vulnerable and weak that it was heartbreaking. This is the same mother, who gave birth to us, who raised us, protected us, and did all she could to support her children. There, lying in that hospital bed, now an amputee she appeared so fragile.

As I finished telling the story of my mom and the amputation, my doctor seemed to gain a better understanding of my reaction to my diagnosis. He did what he could to reassure me that I was going to be ok. His next statement has been my mantra since that day. He told me “Either you can manage your diabetes or your diabetes will manage you. The choice is yours to make.” So after some brief conversation around some diet and lifestyle changes I needed to make, I got up enough nerve to ask the significance of the number 372. He told me that normal fasting numbers are between 70 -110mg/dl (4.0 – 6.0 mmol/l). I had not had anything to eat or drink for 13 hours with the exception of water. My number 372 was more than 3 times higher than normal. I guess it shouldn’t have been surprising that I was not feeling very well.

I learned my first lesson as a diabetic very quickly. I am the type of person who never misses work, always stays longer when I am needed, and generally am a very good team player. That day, however, I needed to wrap my head around what had just happened – I was now officially a diabetic. I called my boss to inform him that I would not be in to work due to personal reasons that I wasn’t comfortable talking about it right now. When I returned to work the next day, he questioned me about my absence the previous day. Now I have a great relationship with my boss and would dare to say that he is one of my best friends so I was actually looking forward to his support in my time of confusion. So I met him in his office and told him that I was diagnosed with diabetes and that was the reason that I missed work. I will never forget his response when he said “Oh, that’s not that big of a deal”. I was shocked. I didn’t know how to respond so I said to him sharply “Really, tell that to my mom that lost her leg due to her diabetes”. I could tell that my response stung him for a second and we quickly apologized to each other. I will say that I am happy that this happened right away because it helped to prepare me for many more similar experiences through my journey as a diabetic. The sad reality is that even though over 23 million Americans and 3 million Canadians live with diabetes, people know next to nothing about it if it doesn’t affect them personally. I can attest to this better than anybody. Even after all that my mom had been through with diabetes, I knew very little about it. I didn’t even know what the 372 meant. I just never took the time to learn. So how could I blame my boss and good friend for not understanding?

The next few days, actually the next few weeks were very difficult for me to manage. I was now a diabetic and wasn’t sure where to go from that point. I went to the local book store and bought some books to learn more about diabetes and diabetes management. I spent every spare second of time that I had researching and trying to find answers. I had to learn how to eat, when to exercise, how to manage my blood sugars, how to avoid complications, and so on. There was so much to learn that it made my head spin just thinking about it. In addition to all of this, I was also unsure if I wanted to tell anybody that didn’t need to know. I don’t think I was ashamed of being a diabetic; I just wasn’t sure how people would react to it. Even at work, it was often a difficult decision whether or not to tell coworkers. I found that most people either didn’t understand or they would offer pity. Many people were in the same boat that I was in before my diagnosis. They had family members or friends that were diabetic but if it didn’t affect them personally, they were really out of touch with the severity of this disease. The more that I read and uncovered about diabetes, the more I wished that I would have taken more interest sooner. I felt as though I could have possibly helped my mom to better manage her diabetes. Maybe she would not be an amputee right now if I had been a better son and shown more interest. Despite what I was facing in my world, I couldn’t help but to feel guilty for not being more involved in the earlier years of my mom’s journey as a diabetic.

As I progressed through the first few months of living with diabetes, I was baffled by some of my learning’s. I just always thought of sweets, candy, soda, etc when I thought of diabetes. I was always fairly active and considered myself to be a healthy eater. I spent a lot of time mountain biking, hiking, working out at the gym, and a lot of time outdoors doing photography. Even though I lived in North and South Carolina for many years, I did not eat much fried food. Most of the food that I ate was either grilled or baked. I always ate whole wheat bread and when I drank milk it was skim milk. I used to joke that my bones were strong because on a normal week, I would consume 2 or 3 gallons of skim milk. I would usually drink two or three glasses of milk with my lunch every day before going to work and another two or three glasses after work. One of the first things that I learned was that it was probably all of the milk I was drinking that was helping to drive up my blood sugars. I could hardly believe it. It’s no wonder that diabetes is so hard to understand. I never equated enriched flour, starches, bread, milk, and some fruits with high blood sugars. I mean who would?

wow, that is quite a story. How are you doing now, and also, how is your mom?

Thanks for taking the time to read it Marie. I am doing pretty well. It has been about 6 or 7 years since I was diagnosed and have since graduated from oral meds to insulin injections. I made the switch to insulin when I really hit rock bottom trying to train for a marathon last year. I was trying to eat low carb on Metformin and ended up getting injured pretty badly due to nutritional issues. Switching to insulin was the only way we could see to continue training and eat the necessary carbs.
My mom actually lost her other leg in February of this year due to a septic infection. They found her in her house nearly unresponsive and not looking very good. She was taken to the hospital on a Wednesday. The doctor basically told her that if her leg wasn’t amputated by Friday she may not be here the following Monday. So she is hanging in there but her spirits continue to be low.

I go with Marie here. That’s quite a story there.

Hi runningforruth, I joined TuDiabetes just this week and am very touched by your story that you tell so beautifully. Fortunately my fasting glucose levels are in the 100-110 mg/dl range and I hope to keep it that way. The part of your story that really grabbed me was, “I felt as though I could have possibly helped my mom to better manage her diabetes. Maybe she would not be an amputee right now if I had been a better son and shown more interest. Despite what I was facing in my world, I couldn’t help but to feel guilty for not being more involved in the earlier years of my mom’s journey as a diabetic”. In my case my dad is having a lot of trouble with his legs and I fear is amputation cannot be far away. Also his memory is starting to go downhill fast recently. I just recently heard that higher doses of insulin cause problems with proteins in the brain similar to Alzheimer’s. I feel a little sick with the thought that I should have been more involved with my dad’s care. Thank you again very much for sharing your story.

Hi Oceanfever. Thanks for your comments and taking the time to read my story. I hope that your dad is able to avoid any more serious complications for as long as possible. I know that it is an incredibly difficult thing to watch our parents suffer and continue to struggle with health issues. My mom is also beginning to struggle with her memory and seems to repeat herself often. I fear that she is soon going to start to decline in that sense as well. Again, good luck. I wish you and your dad all of the best… Rob

Beautifully written. Years before I was diagnosed, I had a T1 friend. Knew that he tested, shot insulin & what happened when he was low & what to do to help him. That was the very limited extent of my knowledge. When I was diagnosed, I immediately felt bad that I didn’t take an interest in his diabetes & didn’t learn more, so I can only imagine how you feel about your mom.

Metformin and low carb dont mix? Could you please tell me why? I have been low carb and on Metformin for a couple of years now. "Thanks and Im wondering about your mom too!

HI Knorris. I think that Metformin and low carb do work. I did it for about 5 years and my numbers were actually pretty good. My issues really started when I started marathon training last year. I was only consuming around 60-70g carbs per day and I am not a tiny guy. If you know anything about distance running it is really dependent upon glycogen stores. I was basically using up all of my stores within the first hour and then was never replenishing or recovering properly. After I got hurt, I went and had some metabolic testing done and found out that I was consuming around 1,500 calories less than I should have on a daily basis. My body was basically utilizing my own muscle for fuel.

So after speaking with my endo, we decided that if I was going to continue to run half-marathons and train for a marathon that I would need to start insulin injections. It was important for me to continue to do the longer runs because I was running with Team Diabetes and most of the runs were used as fundraising opportunities and diabetes awareness.

So I do think that metformin and low carb mix very well because it worked well for me for quite some time. I will say though that since making the switch to insulins and increasing my carb intake I feel like a new person. I have much more info about my mom and running at my website if you want to see it.

Running for Ruth

For any runs longer than 1hr now, I consume about 40g of carbs per hour for the entire run. I am now consuming more carbs during training runs than I used to consume in almost 2 days

and you are still bg controlled? Hummm maybe I should start exercising!!!

Yep. If it wasn’t for running I would probably still be on metformin and low carb. But to run I need the carbs and to eat the carbs I need the insulin injections. I am able to run much more now with higher energy levels and I am feeling good. Exercise has huge impacts on my BG. The amount of running I am doing basically dictates how much insulin I need to use. I can see that when I don’t run for a week, my insulin needs go up and when I am running consistently the insulin needs go down