That's right. Today is my anniversary. 31 years ago today my parents' lives were thrown for a loop. I was diagnosed with Type 1 diabetes.
I don't remember this happening, but I've seen pictures that my mom took of me in the hospital. I've read what my mom wrote in my baby book when this happened. I was two years old and it was two days before Halloween. I don't know what Halloween was like for my three older sisters that year, but I can't imagine it was very fun for them. And now it's 31 years later. I usually don't try to throw pity parties or say woe is me in regards to my diabetes, but today, this day, I allow myself to say that this is really shitty. Diabetes is a crappy disease that no one should have to live with. I should never have been a 10-year-old girl thinking that I would be dead at the age of 25 due to kidney failure after I had already gone blind and had my feet amputated.
Times have changed. I, obviously, did not die by the time I was 25. I have had no complications due to diabetes (other than hypoglycemia unawareness) in the last 31 years, so I'm more fortunate than some, but that doesn't negate the fact that this is a disease. A disease that I live with 24 hours a day. A disease that can be managed with time, diligence and hard work, but is still a disease that affects every aspect of my life.
I NEED to have health insurance. Upon graduation, that was my number one concern, find a job so that I have health insurance. That's one of the top questions I have about any potential job change-what's the insurance? I sometimes have to put Gus on the back-burner and can't play with him because my blood sugar is low and I need to take care of me, instead of going upstairs at bedtime to help change him into jammies and read him stories. I can't just run out of the house without planning ahead--do I have my meter and glucose tabs, do I have my phone in case I need to call someone for help, am I going to be in a meeting where I didn't bring my stuff with me and I'll have to suddenly leave. Something like this did happen recently. I think Jon was gone for a work trip. Gus and I got up and got ready for work and school. I was getting my lunch packed up when I felt super low. I tested and was very low. I drank juice and just had to wait. It didn't matter that I was going to be late to work. If I got in the car to drive Gus to school and me to work, it would have been the equivalent of me driving drunk.
The evening before my wedding, I needed to change my insulin pump. I went to get my supplies and noticed that I had forgotten to pack one of them. After calling Minimed to see about getting emergency supplies, it came down to my dad getting in the car at 10pm and making the 5-hour round-trip drive to get me the supplies that I had forgotten. I love that my dad did that for me, but he shouldn't have had to. He shouldn't have had to be exhausted the day of my wedding because I forgot a stupid medical supply. And just today, I had to call Jon from work to go stay with Gus at preschool because my blood sugar was too low for me to drive. We don't have both cars outfitted with a car seat for him, so because I couldn't drive, Gus was going to be there all alone wondering why I wasn't able to come pick him up.
I hate having a chronic disease. I've been living with it for so long that I make it look easy, that it's no big deal, that I can lead a full life despite it without really much care or thought. Well, that's a big lie. It is a big deal. There is much care. There is much thought. Though I try to live life as normal as possible, with diabetes, it's not. There's always planning and thinking and worrying. I've lived for 31 years with diabetes, will I live for another 31? Will I get to see Gus grow up and see his family? Will Jon have to take care of me and watch me die due to future complications of this shitty disease? I hate it. I hate it. I hate it.
So, on this 31st anniversary, I did not get any cards, I didn't go out for a nice dinner, I didn't splurge on dessert. I allowed myself, this one day a year, to feel bad for myself and to allow myself to hate the disease I must be friends with.