The title says it all.. Lyme isn’t all.
Though Lyme Disease is my main fight right now, I have another daily battle. I have talked about this other battle a few times, but have not focused on it because Lyme is the priority in my life. This other battle? Type 1 Diabetes.
Yes, I have T1D (Type 1 Diabetes).
No, it doesn’t take a break.
Yes, I have to worry about my blood sugar.
No, I did not get it because of a bad diet or a weight/exercise issue.
Yes, it’s a battle. A daily battle.
No, it’s not contagious.
Yes, it’s an autoimmune disease.
No, I never got truly angry.
Yes, I keep smiling.
Type 1 Diabetes is something I never imagined in a million years that I, I, would have; that I would be dealing with T1D.
I was diagnosed on October 31, 2015. Ironic, huh? I was diagnosed with T1D on Halloween, the most sugar-filled day of the year. Well, lucky for me, I couldn’t eat much candy to begin with, due to my restricted diet.
I only told 4 people (outside my immediate family) right after being diagnosed, including two friends that I had planned seeing that night, my boyfriend at the time, and my best friend Tim.
I didn’t wear waterproof mascara, and that was the last time I made that mistake when going to a doctor’s office. (Seriously, I wear waterproof mascara to any doctor’s office now.) I cried so hard and so much that any makeup that remained on me was on my shirt. This diagnosis came out of nowhere. It wasn’t like the Lyme diagnosis. It was confusing, out of the blue, stupid, frustrating and a whirlwind of information. I didn’t have any weird symptoms suggesting T1D, no doctor had told me that I could possibly have T1D.
“I am 17. Aren’t you supposed to get T1D when you’re a child? Why me? Did it really happen? Why are these people talking to me about needles? And lancets? And glucose tablets? Nobody warned me about this. I’m the only one in my family – extended and immediate – with T1d. Am I really balling my eyes out in front of this lovely, kind doctor? She didn’t do anything wrong. It’s my damn body. Why God? Why would you burden me with this? I had surgery nearly 2 months ago. We are in the middle of trying to figure out all of my other crazy symptoms. My parents don’t need to worry about this, too. Oh my God. Why?” – My thoughts while sitting in the endocrinology clinic on October 31, 2015.
So, I wiped my face off, my mom hugged me and we had another quick lesson with an educator. Oh man, was I getting sick of this. And it had only been 40 minutes.
My numbers hadn’t been bad, just borderline bad. The doctors gave me the choice, and I had plans for that weekend. I made the decision, right there, just 60 minutes after getting diagnosed with a lifelong disease, that I was not going to allow this to make the calls on my life. So, I decided to go home. I spent Halloween trick-or-treating for UNICEF with a friend and her sister. I then went to have a movie night with another friend. On Saturday night, a friend and I chaperoned a middle school all night event. On Sunday, I taught Sunday School at my church. And on Monday, I was back to the clinic learning more about my new battle. I was blessed to have had the opportunity to spend the weekend at home and monitor my glucose levels independently; for that I am grateful.
Stabbing yourself, no matter the size of the needle, takes some getting used to. Sometimes it hurts like hell, sometimes you don’t even feel it. Poking yourself 4-8 times per day, that definitely takes some getting used to. The doctor told me I should expect calluses within 6 months – and that I did. This whole Type 1 Diabetes thing? It takes some getting used to.
I forced myself to get used to the whole needle thing, stabbing myself, making sure I had the insulin pen, the needles, my meter and test strips. I had to think harder about where I would be going. I would check my backpack or purse for the necessary items to keep myself safe and healthy at least 3 times before leaving the house for the first month. It became a habit (though I still leave the house without something, but I blame that on Lyme).
It’s been almost a year of having T1D and boy have I learned a lot. It’s been quite the roller coaster; unexpected lows in the middle of the night, frantically searching for fruit snacks in the Target parking lot, changing insulin dosages and ratios, tuning into my body way more than I thought I could, learning to bring sugar of some form everywhere I go, feeling naked without my meter and pen in my purse, owning up to the days when I screw everything diabetes related up, explaining to people that T1D is like clockwork, setting alarms and reminders to check my blood sugar (I blame this on Lyme, too), being okay with the extra ‘equipment’ and not being able to carry a cute little clutch to lunch because that doesn’t fit fruit snacks, a meter, a pen and needles.
I am a little self conscious. I grew up with injuries, they were clearly visible and nobody asked questions about a knee brace, besides, “Are you okay?” Now, I go out to eat and I have people staring at me because I’m stabbing and poking myself. Type 1 Diabetes is often misunderstood (that’s something I’ve learned in the last 11 months) and I am not a fan of people making assumptions. I try to be open minded, welcoming, and nonjudgemental, but I know other people don’t have that mindset. I also know that it really doesn’t matter what other people think of me. I have to constantly remind myself that this is my life, nobody else’s but mine. I don’t deserve to be judged for something I didn’t decide. I deserve to be seen equally, and talked to with respect. T1D is not my disability, it’s just an extra step in my life.
Yes, it is my job to create awareness about T1D and to explain to people what it is. However, remember that other thing I’ve got? Yeah, Chronic Lyme Disease? Yeah. That gets in the way of creating awareness and a platform to talk about T1D. I did go to the JDRF OneWalk last February and had a fabulous team supporting me and the cause. It’s just for now, my priority is creating awareness for Lyme Disease. When I am in remission from Lyme, T1D will become my priority.
Everyday is exhausting from Lyme. And everyday is just a tad bit more tiring because of T1D. I refuse to be a slave to the disease I cannot control. Lyme disease is being treated, I take medicine for that, I will be healthy once again. T1D is an autoimmune disease, it does not stop, there is no cure or treatment; just management.
T1D does not limit me in anyway. I will run, skate, jump, dance, stretch, drive, etc. as much as I want. Right now, the only thing putting limits on my physical abilities is Lyme.
Everyday is a battle with the meter, my blood and my pancreas. My pancreas still works a tiny bit, which is good, but it only means that things will go downhill from here. Somedays seem impossible, my blood sugar is consistently low all day and I feel shaky and hungry all day; other days my blood sugar is elevated a bit and I just get lost in the mess on insulin. I am blessed to have been diagnosed with T1D so early in the development (despite my age being much older than the typical diagnosis age). My numbers were quite remarkable when we caught them. My numbers are still awesome. I’m so grateful for my parents for supporting me, understanding, not judging the situation, and for loving me unconditionally. I am blessed by the grace of God to have been given a support system that is so loving and respectful.
There are the occasional days when I feel mediocre to the world. Like I’m not pretty because of T1D, or I’m not free enough because of T1D. I feel bound and restricted sometimes because of T1D. I know that I am not limited in any way, I know I’m beautiful despite the disease, I know that I am as free as I want to be. I know these things, I tell myself these things everyday. I learn to love myself through the eyes of God a little bit more each day. But sometimes, I wake up feeling just blah because of T1D. My body and mind are so exhausted already because of Lyme, that learning to manage T1D at the same time was and still is hard. Everyday I have to put in an extra step to make sure I don’t pass out, I have to reach a little further to make sure I am getting enough carbs. The days that I don’t feel like moving, every poke feels 10 times deeper, and every shot feels 10 times sharper. Life gets hard and messy. Life gets frustrating and confusing. I just know that each day is a new day, and that each day will present itself differently – different pains and different BG numbers. I get down on myself, but I know that I have so many reasons to smile.
Type 1 Diabetes may not be a reason to smile, but the lessons that I’ve learned from being diagnosed, that’s a reason to smile.
Type 1 Diabetes may not be a reason to smile, but the grace that I’ve learned to give myself, that’s a reason to smile.
Type 1 Diabetes may not be a reason to smile, but the support and love I’ve received from my family and friends, that’s a reason to smile.
Type 1 Diabetes may not be a reason to smile, but the bravery I’ve found in myself, that’s a reason to smile.
Type 1 Diabetes may not be a reason to smile, but the beauty in the messiness of it all, that’s a reason to smile.
Type 1 Diabetes may not be a reason to smile, but the fact that I’m alive and relatively well, all because of Jesus, that’s a reason to smile.
Stay smiling, despite the crap that you’ve been put in front of.
“She is tossed by the waves, but does not sink.”