After I was diagnosed at my doctor’s office I was sent home and told to wait for a call from the hospital. My mom came to pick me up at the doctor’s office (apparently the fact that I drove there with completely blurry vision was frowned upon and they threatened to take my keys if I tried to drive home.) As I waited for the doctor’s call I noticed I was a bit hungry so I wandered into my kitchen and decided that a bowl of cereal was probably a good choice. Insert laughter from every diabetic on the planet. Clearly I had a lot to learn.
I was told that I needed to spend the night in hospital to ensure that they could get my sugars under control. My mom came and drove me to the hospital and I got settled in. My husband met us there and we spent the evening chatting about the curveball we were thrown.
I was told my blood sugars were in the high 600’s when I arrived. As they began to give me insulin to bring my sugars down they informed us that thankfully, I had caught this early enough and had not suffered any damage from prolonged high blood sugars. I was told to rest that night and that there would be lots of people coming to meet with me in the morning to set up the rest of my treatment. Assured I was in good hands, my husband headed home for the night.
I was given a dose of insulin before bed and, being exhausted from the day, quickly fell asleep. It couldn’t have been more than an hour and I woke up in what felt like a snowglobe. Everything was moving very slowly and my thoughts felt like they were traveling through oil. I also noticed that despite it being fairly cool in my room, I was sweating like I had just finished a marathon. I thankfully had enough brainpower left to find that magic nurse station button on my bed and I pushed it, and I pushed it again, and I pushed it about 50 more times in a slow moving panic. This was perhaps one of the most horrible and unexplained feelings I had ever had and it needed to stop…Now!
Finally a smiling nurse came in and innocently asked what she could do for me. It took only a second before she saw that I was sweating buckets and could barely speak. She ran to get me some juice and calmly explained to me that I had experienced my first low blood sugar. She got me some dry clothes, new sheets and some more juice as I began to shiver from the cold sweats. She looked at my chart and asked if I had been given a snack before bed. I said no, just insulin. Apparently I was supposed to get insulin and some crackers. The cracker part of the equation was left out and I had more insulin than I needed floating through my body.
The next day came with no further issues and I had the opportunity to meet with a few doctors, educators, and a nutritionist. The nutritionist came into the room to discuss the very basic do’s and don’ts of diabetic eating. Looking back I would now beg to differ with the majority of what she said but it was a start I guess.
At one point she looked at me and, chuckling, said “You know I’ve been told I’m pre-diabetic so I guess I better get my act together and do some of what I tell my patients. (insert uncomfortable fake laughter)” At the time I politely laughed along with her as I still didn’t really understand what my new life was going to look like, but every time I think back to that conversation I wish I would have thrown a shoe at her, or maybe at the very least a test strip.
Here I am laying in a hospital bed with a disease I most certainly was not warned about and you are telling me that, you’ve been give in a warning and you are making excuses instead of doing something about it???!!!!
Type 1 diabetes comes out of seemingly nowhere, no warning, no chance to reverse it, but Type 2 and Pre-Diabetes comes with a fairly good chance that a change in lifestyle can lessen your diagnosis. Excuse me, if you aren’t planning to use your chance to avoid this stupid disease, could I possibly have it?
Fast forward a few years to a very cranky endocrinologist who treated me in the same way he would treat an elderly Type 2 diabetic. Up to this point my pancreas was on its farewell tour and was still producing a very small amount of insulin. This “honeymoon phase” as its oddly called (a trip that seems to have a horrible end if you ask me), was coming to an end and I was noticing that my sugars were rising no matter what I ate. I pleaded with my doctor to let me start insulin so that I could eat something other than a salad and eggs. He refused. I kept pleading. Finally, I won him over and he agreed to start me on insulin. His instructions were as follows; take 3 units of fast acting insulin before eating. That is all. Any diabetic who has been on fast acting insulin for a period of time knows that the amount of insulin you take is based on the amount of carbohydrates consumed. This was not explained to me.
So I gave myself my shot, innocently ate a very low carb dinner and went to a school concert with my husband. One song into the concert and something just didn’t feel right. I checked my sugars and I was at 60. Still being a very new diabetic on a very new to me medication I felt the fear rush through my veins. I got up from my seat and walked into the lobby and saw a low blood sugar oasis, a refreshment table for after the concert.
There I stood, without an ounce of self consciousness, and ate. Thankfully, no one questioned me or reminded me that we were only on the first song of the concert and this food was for the end of concert. I got my sugars back up, held my head high, and went back to my seat and enjoyed the rest of the night while internally concocting the rant I was going to unleash on my doctor come Monday.
What a collection of horrible things right? I bet I never trusted another doctor again and I certainly must think that all medical professionals are a bunch of quacks. Wrong.
Over the last 12 years I have clearly had my fair share of oddball doctors, nurses and educators but I have also had life changing care from people who truly internalize and understand what it is like to be in my shoes. I have left doctors who always stood with a hand on the doorknob ready to leave as soon as I stopped talking for even the briefest moment and found a medical team who instead holds my hand when they see stress on my face while saying “let me worry about this part.”
When I got my new pump I had the incredible opportunity to meet my diabetic educator and nurse Patti. You know that feeling when you just click with a person? Patti exudes that level of comfort as soon as you meet her. She listened and offered suggestions and checked in with me throughout the weekend to make sure I was ok with the new pump. She consistently sifts through my pump data and gives me the best gift a diabetic could have, reassurance. She reassures me that my efforts are enough and that I’m doing what I need.
Diabetics are notoriously hard on ourselves and a person who never tires of giving out this reassurance is someone I am truly grateful for. So Patti if you are reading this, thank you. Always know that you are making a difference.
My favorite thing about my current endocrinologist is that she has a habit of calling me “dear” and “sweetie”. This woman has more education and knowledge in her little finger than I could ever hope to possess but she communicates openly, on a human level, and respectfully maintains her patience even when asked the same questions time and time again.
On my first visit, she held my hand and told me to worry about the things I could control and that she would handle the rest. 12 years of this disease has given me a tough skin so it is a welcomed respite to be able to let go of a small piece of this battle.
Lastly, my diabetic team gave me two healthy, beautiful, strong baby girls, and their lives are a tribute to the careful care they provided throughout my pregnancy. I met with them every week at the hospital and each week, like clockwork, they adjusted the levels of my insulin pump which allowed me to stay in the best control of my entire life. They truly know their craft and shared it with a high level of care in a way that made it easy for me to maintain.
This team was the reason my babies were born at 35.5 weeks after seeing my blood sugars do the opposite of expected for that week of my pregnancy. A week of ultrasounds revealed that one baby’s placenta was beginning to get a limited blood flow and resulted in a c-section that Friday. Without my diabetic team making this connection and catching the change in my blood sugars I could be standing here telling a much different story about my pregnancy.
My girls were born at a combined weight of 12 pounds (6lbs. 1oz. and 5lbs. 15oz) and were only in the NICU for an hour as they monitored their body temp and blood sugars. I am eternally grateful to them for giving me our little family and for taking me through the process with minimal fear of the “what ifs”.
Are their oddball doctors and nurses out there? Yes. Do doctors and nurses make mistakes? Yes. But there are also amazing, dedicated and caring medical teams out there. As a patient it is our job to be aware and be our own advocates. We can’t just walk into a doctor’s office and expect to turn our brains off. We have to be an active participant in our own care as no one knows our bodies better than us and we have a right to insist on getting our needs met and questions answered.
We also have to be ready to offer some give and take as well. We have to be ready to let go of some control (easier said than done), and let the doctors do their job. We cannot fight every suggestion, insisting that we know better.
It is also important to talk with others in the diabetic community who are walking down this same path. It is easy to stay in our own bubble, but we can learn from others’ struggles and successes and we can find that perhaps we are not alone. This disease is very lonely if we travel alone and today I am so very grateful for those who have shouldered some of my load over these past 12 years.
What are some of the things that your medical team provides you that fill you with gratitude? Is there a doctor or nurse that stands above the rest or a moment when, thanks to a doctor or nurse, your life took a turn for the better?
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