Everyone has that turning point in their life when everything changes, whether it’s for the better or worse. It could be a family member’s death, an ex-boyfriend’s wedding (or your own wedding), a career change or a diagnosis of a chronic disease. I believe everyone has multiple turning points. We, as humans, have a long life expectancy and it’s crazy to think our lives will always remain status quo.
This is the story of my first major turning point in my life.
When I think back to the beginning of 2011, it all starts to make sense. I was always tired, taking naps almost every day and going to bed around 8 at night after taking those long afternoon naps. I was in my last semester of college so I thought I was just tired from the amount of stress I was under trying to complete all of my graduation requirements while searching for a job. I didn’t think anything of it. Just kept on sleeping.
Then, in June of 2011, I moved to Northern Virginia for a job. I was still always tired. My co-worker, whose mother has diabetes, suggested I get checked out to make sure everything was ok. He said his mother had felt extremely tired before she was diagnosed. I laughed it off. Sure, there was a history of diabetes in my family but I didn’t think I could ever get the disease. I was young, healthy and totally naïve. But, I began to worry when I started falling asleep at work almost uncontrollably. I literally could not keep my eyes open during the day. I had picked up rock climbing when I moved to the area and went after work almost every day. By the end of August I never had the energy to do anything after work except nap. I still hadn’t correlated it to anything other than a lack of sleep.
Around the beginning of September, I started having really bad lower back pain. I would stay awake all night because I could never get comfortable enough or take enough medicine to ease the dull, achy throb in my back. When that pain moved to my lower stomach two weeks later, I started to think it was something more serious. Maybe a cyst on my ovaries or something worse. I found a general doctor in my area and made an appointment.
The doctor did her usual check-up. She asked where it hurt, did an exam, and got a urine sample. She said my ovaries felt fine. No cyst that she could feel. After testing my urine, she came back and said there was an elevated amount of sugar, which usually meant diabetes. And that was all she said. She told me I probably had a UTI (common for undiagnosed diabetics) and gave me antibiotics.
A week later, the pain was gone. I went to her office again for lab work just to make sure everything was ok. A few days later, I got a phone call.
Your fasting blood sugar is 417.
“Is that bad?” I asked. (Little did I know your fasting blood sugar should be below 100)
“Yeah. It’s not good. You have diabetes. From your test results, it looks to be Type 2 diabetes. Your thyroid levels are also very low, indicating hypothyroidism.”
Two chronic diseases in one day. Lucky me.
All I kept thinking in my head was, “Type 2 diabetes? What? How?”
I was healthy, active and young. I knew diabetes could happen at any age, but I didn’t fit any of the criteria for Type 2 diabetes. It just didn’t make any sense. I was confused, and in my confused state, I started to cry on the phone, at work. The nurse was clearly unsettled by my big heavy sobs. I was unsettled by my big heavy sobs. I had never cried like that in my entire life. I had never cried even a fraction of that at work.
The nurse kept trying to tell me that everything would be okay. That Type 2 diabetes is extremely manageable. That his grandfather had Type 2 diabetes and still had both his feet. I don’t know about you, but the last thing I needed to hear was that this man’s grandfather hadn’t lost his foot to diabetes. I was told to come into the doctor’s office as soon as possible.
A few days later, I was prescribed Metformin, a drug commonly used to treat Type 2 diabetes.
I wasn’t told to get a blood glucose meter.
I was told to stay away from sugar (when really, it’s the carbs that are cause for concern).
I was told that I could still get pregnant (and if you know me, you will know that getting pregnant is not even on my radar).
I was told that I probably wouldn’t lose my feet and that I probably wouldn’t go blind, but it was important to get eye exams and check feet for injury.
And that, my friends, was it. That’s all I got from this “doctor.” No second guessing the fact that I was losing weight, that I was well within the normal BMI for a 22 year old female, that I was active, that I rarely ate junk food (I have more of a chocolate and fro-yo addiction). Apparently she didn’t think a C-peptide test was necessary (test to show how much insulin your body is creating, therefore determining whether you are insulin resistant-Type 2- or insulin dependent-Type 1).
So, I took Metformin for about a week and a half. I had never felt better. I had more energy than I had in months and everything seemed great.
Until the end of that week and a half when I crashed.
It was one of the worst feelings in my life. I was always thirsty and always going to the bathroom. I could hardly walk from my desk at work to the bathroom down the hall without getting tired, so I dreaded the 10+ trips I had to make in an eight hour work day. I was falling asleep while driving. I couldn’t exercise because the sheer thought of that much movement made me tired. I dropped 15 pounds in two weeks to a weight I hadn’t seen since I was in middle school, even though I was eating more then usual. I knew something was wrong. It wasn’t until my Grandma, who has diabetes, tested my blood sugar with her meter (because I still didn’t have one). My number was in the 500s. She was so flustered, she tested again, saying that she must have done something wrong. The next reading said “Error.” That’s when I knew. I couldn’t help but break down and just cry. I wanted to get better and I had no idea what was going on with my body. I cried because I was scared. I cried because my doctor hadn’t fixed the problem. I cried because I wasn’t sure what else to do.
Monday, I made an appointment with an endocrinologist right away. When I first called, the receptionist told me she didn’t have any openings for almost a month. I simply told her my blood sugar was in the 500s and I needed help. She got me in two days later.
At that very first visit with my endo, Dr. A, she told me that my diagnosis was wrong. I was not Type 2. She assumed I was Type 1.5, which is Type 1 diabetes, essentially. It is an auto-immune disease (Type 2 is not) and since I was diagnosed with hypothyroidism (another auto-immune disease), my chances of having Type 1 diabetes was higher. The difference between Type 1.5 (LADA) and Type 1 is that I still have some functioning beta cells that are creating insulin, for the time being at least. My auto-immune system will eventually kill off all these beta cells and I’ll be completely dependent on insulin. Right now my beta cells have good days and bad (as evidenced by fluctuating blood sugars). Anyway, my endo ran a few more tests and told me we would know for sure once the results came back.
In the meantime, she gave me two blood glucose meters, taught me how to use them, told me how often I should be testing, etc. She took me off Metformin and put me on Amaryl ( an oral medication) and a low, 15 unit, dose of Lantus (insulin) in the morning. I learned how to give myself a shot (it took me a good five minutes in the office before I could actually poke myself) and was told that I was handling everything extremely well. Apparently most patients are upset and resistant to the news that they need to introduce insulin into their daily routine. I welcomed the compliment but only wished my doctor and nurses knew that inside I was panicking. Inside I was freaking out about everything. But ultimately I wanted to do what was going to make me feel better. It was at that point, needle poised inches away from my stomach that I knew my life was changing. Then the needle was in my stomach.
I continued on the low-carb diet I had adopted when I thought I was Type 2, because lower carb means less insulin need. I increased my exercise once I started feeling better, which happened about three or four days after starting on insulin. My numbers were still high. They were probably down in the 200s on average after about three weeks from the 400s and 500s. By the end of the first month with insulin I was in the 100s regularly.
To give you a number breakdown, a normal person has a fasting blood sugar of less than 90 (fasting blood sugar is when you don’t eat for 8 hours) and a blood sugar two hours post meal of less than 120. As a diabetic, my goal is to have a fasting of less than 100 and a two hour post meal reading of less than 140. Of course, if anyone knows me personally, they know that I try to stay within “normal people” numbers. It took about a month and a half for my numbers to stabilize. And when they did, I felt like a new person. I had more energy than I ever remembered having. But I still didn’t know what type of diabetes I had. The test results took nearly two months to come back.
I was officially diagnosed with Type 1.5 diabetes on December 6, 2011. It was a long road from September 14, 2011 when I was first diagnosed with Type 2 diabetes, but I’m just happy to be feeling better again. Right now, I know my blood sugar is easier to control because my body is still producing some insulin. But I know there will come a day where my 15 units won’t be enough. That will be the day I see some astronomically higher number on my meter. My doctor said that could happen in a month, five months, a year or even two from now. Sometimes I still don’t think I’ve necessarily grasped the idea that one day I will be completely dependent on insulin to live. If I think about the future and the long term, I get overwhelmed. If I start thinking about this chronic disease and how it’s never going to go away, I get really stressed out and emotional. So I try (try being the key word) not to think about it that way. One day at a time. All I can do is take it one step at a time. All anyone can ever do is take it one step at a time.
“The mind is everything. What you think you become.”- Buddha