Surviving Type 1 While Fighting a Mystery Illness
The Type 1 diabetes world was never a new world to me, and not because I was diagnosed as an infant. With my mom having been diagnosed with Type 1 at the age of 8, I grew up around syringes, test strips and carb counting. I even used to love eating her glucose tabs when she wasn’t looking. In my early years we started attending JDRF events and I remember walking around feeling so proud that my mom was a fighter of this condition that we were all gathered together to raise money to cure. Though truthfully, I didn’t understand the seriousness of it. My mom always handled her Type 1 with such grace and control that I don’t think I ever knew the implications of the fight she was dealing with every day. So when I was diagnosed at the age of 12, my first thought was, “That’s okay, I’m like my mom now.” I slowly became one with Type 1.
By the age of 19, I felt like a seasoned veteran. I was at the beginning of college and it was time to start the best years of my life. Unfortunately, they never quite happened, as I had to drop out. You hear stories about people who get sick with mystery illnesses but you never think you’ll become one of them. Slowly but surely, I became one. One symptom would pop up after another. At first it was just frustrating fatigue that left me struggling to take public transit. Doctors, of course, questioned whether my blood sugars were in control. Then came the muscle weakness.
Seemingly easy things like washing my hair in the shower or holding a shopping bag became a taxing struggle and climbing a small set of stairs became like climbing Mount Everest.
I’d have stroke-like episodes of half my body going numb. My coordination had worsened and my constant tremor had become more prominent. I became dependent on a walker for longer distances at the age of 22. A couple of months later, I began to have bladder problems and went into urinary retention multiple times and had to be catheterized. Let me tell you, there are few things more humbling than being attached to a bag of your own urine.
I began seeing specialist after specialist, trying to get to the bottom of what was making me so sick. The obvious possibilities like mono were slowly ruled out at the beginning. I had already been diagnosed with Hashimoto’s Thyroiditis which was under control with medication, so my amazing endocrinologist told me that wasn’t the culprit. No medical professional really knew what to do with me.
For a while they thought maybe I had Lupus, then they thought maybe Lyme Disease, but in the end, everything was being ruled out and nothing was being ruled in. Being a young woman, I was asked by many people if maybe I was just depressed. I told them with complete certainty that this was not depression, but unable to find any abnormalities in most of my lab tests, all they could do was shrug their shoulders.
They have a “sick day” protocol for us Type 1 diabetics. Well for me, everyday had become a sick day. My Type 1 was harder to manage than ever. It was unpredictable how today’s worst symptom might affect my blood sugar. My foggy brain made it hard to calculate how much insulin I needed. The fact that I was seeing spots all the time made it harder for me to detect my low blood sugars. On top of that, my stomach issues felt like they were going to prevent me from treating my lows. At this point, Type 1 became even more of a challenge. And is it really a challenge if it doesn’t scare you? The answer is not really, and I’m ready to be facing this challenge every day. As of now, my body is on the fritz and the hard truth is that despite these important systems failing, we still don’t know the cause.
Yes, I may be hobbling around with a walker like a 90-year-old. No, I may not be able to climb a mountain. There are days where I grow extremely frustrated with the medical system, and I wonder why they haven’t been able to help me. But I will not stop looking for answers and seeking treatment, because one day I am determined that I will be able to climb a mountain. I know there is a doctor out there who can figure this mystery out.
I read amazing stories on Beyond Type 1 about my fellow Type 1 diabetics doing incredible things that are defying their personal limits, and am greatly inspired to pursue that life I dream of. I’m living beyond by fighting for my future, even when I feel like I’m at my last straw.
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