Somebody New

It’s hard to not feel constantly defeated by diabetes. It’s hard to not feel defeated when the numbers continue to peak, but you’ve already bolused more insulin than you should have. It’s hard to not feel defeated when you need to ask loved ones to call at midnight and 3 AM to ensure you haven’t slipped into a diabetic coma while sleeping. It’s hard to not feel defeated when you must carry this weight around constantly.

A little voice in my head cries “I just want the needles to stop, is that too much to ask?” I don’t want to have to think so much before eating. I don’t want to weigh my food. I don’t want to force blood out of my fingers. I don’t want to monitor my life supplies. I don’t want to survive. I want to live.

Adhesive residue covers my body; my back and sides look more like the aftermath of a duel than skin. I gain weight and lose weight, gain weight and lose weight, gain and lose, gain and lose and gain and lose and gain and lose as my blood sugars fluctuate and stabilize.

The smell of maple syrup is one I’m all too familiar with for all the wrong reasons. The taste of cinnamon coerces relaxation while enticing conspiracy theories. Chalky artificial fruit flavoring triggers memories of summer camps and middle-of-the-night emergencies. There are test strips everywhere.

*Alarm blares* I check my sensor. I brush my teeth. I check my sensor. I pack my lunch. I prick my finger. I sit in class. I bolus. Wait ten minutes. Eat. Wait two hours. Check my sensor. Wait one hour. Prick my finger. Bolus. Wait ten minutes. Eat. Deflect stares confusion curiosity questions. Wait two hours. Check my sensor. Wait one hour. Prick my finger. Bolus. Wait ten minutes. Eat. Wait two hours. Check my sensor. Wait one hour. Prick my finger. Bolus. Don’t wait just Eat because my mother does not think about my diabetes. Eat because my mother forgets my pain. Wait two hours. Check my sensor. Prick my finger. Bolus. Pray to a god I don’t believe in. Pray I make it through the night so I can do this all over again and again and again.

Don’t think about how hard you work to live. Don’t think about how no one notices, takes the time to care, takes the time to love. Don’t think about how your mother does not need to wait to eat, so she forgets that you do. Don’t think about how your mother doesn’t see your suffering. Don’t think about your father and his selfish lifestyle. Don’t think about how he cares more about his own pain than yours. Don’t think about the needles. Don’t think about the vials. Don’t think about the alcohol and lancets and adhesives and sensors and test strips and measuring cups and timetimetime. Don’t think about the pain.

Push the pain away like a blanket when it becomes too warm. Fold the pain into a drawer. Now close the drawer and lock it. Throw away the key. Push the desk to the back, innermost corner of your mind. Get a new desk. A desk with no drawers because now you don’t have pain to hide. You have no pain.

Until three hours pass and it’s needles again. Until three days pass and it’s needles again. Until seven days pass and it’s needles again.

Push the pain away.

You have to think about living. You have to think about your choices, because you know more than anyone about their consequences. You have to think about what makes you happy and what makes you sad and what makes you mad and what makes you anxious and what makes you feel because that all impacts how your body behaves. Sometimes I want to turn off my feelings. I don’t want to think.

Sometimes, I ignore the needles. I don’t inflict pain. But then the pain comes and oh god it’s too much, is this what death feels like? it must be, oh god, I don’t think I can make it call the ambulance go to the hospital, is this what death feels like? A part of me dies every time. I promise I won’t do it again, and then I break that promise.

I didn’t ask for this life. I didn’t want it. Can I cancel this transaction and start over?

Sometimes, I ignore the needles. Sometimes, I want to die. Sometimes, I doubt that my life is worth this much work.

Is worth the needles is worth the pain.

Sometimes, Always,  I want a taste of Normalcy. Sometimes, I want to be Somebody New.

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Stubborn Love

I haven’t published a post in a while because I haven’t been able to finish writing. I keep starting to write, starting to develop a story, some mediocre plot, but it falls apart just as I begin to pick up some steam and I never follow through. School began two weeks ago for me, and I feel like I haven’t had time to even breathe.

My goals for this school year are to become completely independent and to eat healthier. I’ve been eating salad whenever possible and trying (sometimes miserably, sometimes bravely) to stay away from heavily processed and all around unhealthy food. I’ve seen a dramatic change in my blood sugars since I changed my diet, and I have much more energy than before, but I know that the road ahead is long and foreboding. I’m determined to stick it out.

I keep feeling like none of my classes stimulate me or my mind. I’m taking mostly Advanced Placement, AICE, or Dual Enrollment courses, and yet I feel like I’m hardly in a Gifted class. My appreciation of intelligence and learning is quickly being depreciated as my teachers seem to have given up on educating seniors before we can even begin to lose our willpower. I’m not ready to take a break or stop learning; I want to be challenged and tested and pushed to my limits so that I can keep breaking my limits. It’s upsetting that my teachers seem to not share in my passion.

I’ve made friends in unlikely places and people, but I’m happy. I’m happier than I’ve been in months. Ex-Boyfriend still rings a steady pang in my heart, but I’m learning to live in memory of him instead of for him. I’m learning to be my own person, and most importantly, to be a better person. A few days this week have been particularly difficult, and I’ve had moments where I’ve wanted nothing more than to pick up my phone and call him, but I power through. We watched a short movie once from Disney; the moral of the film was perseverance in the face of adversity with the catchphrase “Chin up now, pip pip” repeated throughout the film. When I would be having a bad day, he would kiss my forehead and tell me the phrase, and just the silliness of the “pip pip” would make me feel better. I tell it to myself almost every day.

I’ll be okay. The more I say that to myself, the more likely it is to be true. At least, that’s how it works in theory, right?

I’ll be okay.

Heart of a Lion

I’ve succumbed to the dark world of Reddit-and I love it. I was always repelled from using the site due to its completely user-unfriendly desktop site, but a friend recently recommended the app BaconReader and I can’t put it down now.

Today, I decided to visit /r/diabetes_t1, so make this another chronicle in the series of trying to come to terms with my disease. I think that’s my mission for my last year of high school: Accept (or at least come close) my diabetes and learn to be okay with being alone. So far, I’ve provided advice to someone with questions about Sensors and also helped someone who was having trouble explaining what being low/high feels like.

It feels good, I feel like I’m doing something right. The past few days, as I’ve struggled to come out of the pool of Missing Ex-Boyfriend that I’ve been drowning in, I keep telling myself (because of trusty advice from Pelican) that my best chance at winning him over again is to prove that I am a better person. I try to be a good person, and I fail often, but I don’t stop trying. I’m studying for the ACT, I’m playing video games into the early morning, I’m getting exercise, I’m reading, I’m keeping up with the 2016 Election, I’m editing videos, I’m doing college applications. I want to prove to Ex-Boyfriend that I am worthy of his trust, and I went through a really rough patch, but I am trying my hardest to do better and be a better person.

I’m often lonely, but I also keep telling myself that I shouldn’t rely on other people in order to be content with myself. I think the hardest part of all of this is trying to convince myself that despite everything I did, I’m still a somewhat decent person.

Wish me luck.

How to Teach a Disease

The next chronicle in my ongoing struggle to tackle my diabetes head first and finally come to terms with it.

I’ve done some research and have been reading some new websites, places where I can somewhat quench my eternal thirst for knowledge. I was getting a bit bored of Vox and The Verge and have thus far read around on FiveThirtyEight and Nautilus. I am very disappointed.

On both sites, my first search was “diabetes”. Nautilus claims to be a modern science magazine, yet all of its diabetes related articles had “obesity” in the same sentence, as if diabetes is intrinsically linked to obesity in all cases. It’s frustrating when the level of stigma surrounding the disease is so intense that even science magazines contribute to the misconceptions. The only articles that differentiated between the two types of the disease only commented on Type 2, only serving to add to the stigma surrounding the disease. The one article that showed a hint of promise by not including obesity in the headline or subtitle was actually dedicated to newly discovered advancements in cancer treatment.

How am I supposed to accept my own disease and its difficulties when most of the people I surround with have their understanding of it all wrong? I’m supposed to completely reeducate all of my peers, try to erase what they’ve been conditioned to know and teach them the reality of my daily struggle to live.

Death (Cab for Cutie)

Personally, I think my biggest fear is that I do not fear death enough. Most teenagers like me are terrified of the notion of death because we are taught to believe that we have time. I understand that my moments on this planet are fleeting and will soon be forgotten when I pass. I understand that while most people like to believe they have X amount of years left, and dread the moment when the Grim Reaper comes to collect their souls, I have merely accepted it. I know that life, for the most part, is suffering, but I also know to appreciate the happy moments when they come because they are few and far between. I’m at a state of acceptance which leaves me feeling empty and cold most of the time, but this too I have come to accept. I’ve been told that I’m an old soul reincarnated and having a hard time adjusting, but I think by having this acceptance that I truly may not wake up in the morning leaves me yearning to make more use of the time when I am alive and able to do something. For all I know, I could be the person who cures Diabetes. Although in centuries I will be forgotten because Diabetes no longer exists, my name etched in stone that has long weathered away, I will have made a difference in the lives of countless people right now, and that is enough for me. If I make an impact on merely one person in my lifetime, that is enough for me. In history, my life will hardly be a wrinkle in time, but I aim to make this wrinkle worthwhile.

Success

Today is Day 2 of my vacation and it was such a self-esteem boosting kind of day, even though it didn’t start out too great.

Basically, in the morning, I miscalculated my carbs for breakfast and my sugar dropped as soon as we walked into Universal. I was worried because we were rushing to the new Harry Potter area, and with my dad being a tremendous fanatic of Harry Potter, I knew it would be entirely up to me to treat my low. After walking into 3 different stores and still not coming up with anything to raise my sugar, I was starting to panic and my parents were no help whatsoever. My breathing was starting to become labored and finally, as soon as we walked into Diagon Alley, I bought an orange juice at a shop in there (very good by the way, they put brown sugar around the rim of the cup and it was delicious).

The day continued and started brightening up, despite the weather becoming progressively cloudier. My day really brightened when a trio of workers from the Harry Potter area walked past where I was seated waiting for the parade, looked at me and told me I was beautiful. It was just a passing comment, and it floored me because I really wasn’t expecting it, and it was impossible for me to keep the grin off of my face during the duration of the parade as dancers and people dressed in the costumes continuously came up to me, kissing my hand and hugging me. That entire experience really did wonders on my self esteem and I just still feel so good.

Really, it was mostly feeling like I am beautiful even despite my sensor. The entire time I’ve been on the sensor now, the one feeling that has yet to go away is that the sensor will make me less attractive than I am. I see it as a flaw that an endless number of people will not have but I do. Now, after today, I am fully prepared for Saturday when we go to Islands and I take off my shirt to go on the water rides. I don’t care what people think of my sensor (for now); my sensor is a part of me and it makes me no more or less of a person than I am without it. If someone has an issue with it, that’s their problem.

I had to take my sensor off of my back last night after getting to the hotel from a day spent in Hollywood Studios and Epcot. In the shower, it completely peeled off due to issues with the adhesive patch. It’s back on my stomach, although it is placed much higher on my abdomen in hopes that I manage to avoid it getting caught under harnesses. It was trapped today under the lap bar on Rip Ride Rockit, and although it was by no means a pleasant experience, it was bearable.

I feel good. Really, really good. I haven’t felt this good in a really long time, such a long time I almost want to cry because of it.

Apprehension

This Wednesday I will be leaving for a final vacation before classes start. I’ll be heading up to Orlando and going to the Universal parks and Disney World parks with my parents. I love going on vacation alone with my parents because, as bad as it sounds, I love how they treat me like an only child when it’s just us three. They spoil me and give me the attention they’ve neglected me from past years, and I love it.

However, by the same token, I’m slightly apprehensive about going on vacation. When we go on water rides, I usually plan ahead and wear my bathing suit top under my shirt, and bring a back up bra, so that when I go on the rides, I take off my shirt to keep it dry, go on the rides, and then go to a bathroom and put on my dry clothes so that I can be comfortable the rest of the day.

Now that I’m on the sensor, I’m thinking twice about taking off my shirt in a crowded park. I’m wearing the sensor on my back now, I thought it would be safer there for when I go on roller coasters. I don’t want to put up with the stares. I know people will be looking at me weird, I know that only few, if any, people will understand and I don’t want to put up with me. I know I shouldn’t let it get to me, but like everything with my disease, it does.

Today I purposely didn’t wear my bathing suit to my baby cousin’s birthday party because I didn’t want the other people in the pool to stare at me. I hate how different people make me feel by not minding their business. It just sucks.

I hope (really, I know) that by the time Wednesday comes around, I will more or less be ready to take on people’s indiscretion and try to not let the stares get to me.

It’s my final week before going back to school. I really, really hope it’s a good one.

Defeat the Low

I’ve been doing a great amount of thinking lately (and a great amount of reading at that), which as always can be a good or a bad thing.

As of right now, it’s been neither really. I can’t really wrap my head around it. I guess I’ve just been thinking about so many different things that I haven’t really been able to settle on one specific thing for any length of time, and during all the time I’m not thinking actively, I’m either reading, sleeping, or playing piano.

And here, I discuss what’s been occupying my mind as of late:

I’m worried about school. Classes start for me on the 18th and I’m not nearly as scared as I was this time last year. I know more or less what to expect now. I’m eager to meet my new teachers, for film to really start, to get back on an active schedule and stop feeling like such a recluse. My worries, however, are for my sensor. Whenever I think about it, I just think about the two years I was on the pump, and how much taunting and ridiculing I had to endure because of it. The one thing that really sets me apart from most people was put almost proudly on display for everyone to see, and it was very difficult to hide as my wire hated being tucked into the waistband of my pants. I know that the receiver I will keep hidden in my bag; I’ll have to remind myself it’s in there so as to keep myself from hurling my bag around as I so often used to. I’m also likely going to invest in some big sweaters to cover the actual sensor on my stomach. This is really the only thing I’m apprehensive about for the upcoming school year, but it’s enough to keep me up at night every now and then.

I can’t wait until I have a place of my own. I can’t wait to move out, honestly. Now, with the rest of my family working every morning and most afternoons, I have the house to myself for plentiful hours Monday through Friday, and I absolutely love it. I don’t mind washing the dishes, or sorting the dirty clothes, or picking up after everyone. It gives me a sense of responsibility I absolutely love feeling. Through this, despite everything my countless doctors have tried telling me, I feel like I can take care of myself. I don’t have to rely on anyone, and I’m not scared to be alone for long periods of time. I know nothing will happen to me, especially not now that I’m on the sensor and keeping a much tighter control on my diabetes. I honestly feel better than I have in five years. I love the quiet, the stillness, not being afraid to go to the kitchen in my underwear to get some string cheese. I really honestly cannot wait to move out.

I am actually a crazy fangirl. This disappoints me, as I usually cannot stand fangirls; I find them annoying and usually, I feel that they make whatever they’re obsessing over less special than it has the potential of being. But after sitting for five hours at my desk finishing my fifth book in two days, and squealing as the guy and girl ended up together and returned all their loved ones to the base camp, I realized: I am a fangirl. I need rehab, maybe even some therapy, maybe some medication. Scratch that, no rehab, if anyone even tried to take away my books at the moment I might bite them. My books are what is keeping me grounded at the time, and I haven’t felt this alive, because of anything, in a really long time. Books have given me back what I lost a few years ago and that I didn’t see returning for a very long time, if at all, and that is hope.

I haven’t been drawing lately. I’ve lost any sliver of creativity I used to have, and I don’t know why. I’m guessing I have artist’s block. At least this opened up more reading time.

I haven’t felt anxious in a while. I’ve even felt slightly motivated every now and then, such as when doing my summer reading. It feels great. It really, really does, more than I could ever hope to accurately express. I don’t feel like a zombie anymore, I don’t feel like I’m just surviving. I truly feel like I’m living. I’m in the here, right now, and I haven’t felt this alive in a really long time.

I really hope this lasts. I really, really do.

Such Great Heights

I’m very happy to announce that I’ve uploaded my first vlog video!

I decided to make my vlog dedicated to my diabetes. I’m hoping this will serve as a sort of therapy for me, and eventually I will become more comfortable with my disease and it will no longer be my Achille’s heel. It’d be wonderful if any of you watch my video, and even better if you subscribe! I’m really, really excited for this project. I have a lot of big goals for this vlog.

The Child We Lost (Or Never Had) 1963

As always, I’ve been thinking a lot these past few months, and I have reached my decision where I never want to become pregnant. Weird, I know. Last year at one of my many doctor’s appointments, I was told by my endocrinologist that although it wasn’t necessary for me to know at this age, if I ever wanted to become pregnant, my A1C had to be at 7 or lower.

Your A1C, in basic terms, is the average of your blood sugars over the past three months. The average person who does not have diabetes has an A1C between 4.5 and 6. My A1C has not been lower than 8 for about seven years.

Upon receiving this news, my heart dropped. Not only would my A1C have to be under 7 before even conceiving the baby, it would have to remain under 7 during the entire duration of my pregnancy and the birth of the baby. At that moment, I knew that despite my best efforts to get my sugars into check to that point, it will likely never happen. At that moment, I realized I probably would never end up having my own child.

Now, my thoughts on this matter are more that I don’t want to have my own child instead of I can’t. Even if I miraculously managed to control my diabetes that well, there are numerous other complications that could occur, simply because of how long I have had the disease. Doctors have always told me that diabetic complications begin coming into effect usually after having the disease for ten years. I will have had Type 1 Diabetes for 14 years on August 25th. By the time I predict I would be considering having children, I will have had the disease for approximately 25 years. Anything could happen. Complications occur with women who are perfectly sound and healthy, who’s to say they won’t happen to me? God knows I’m as far from healthy as you can get.

I know it’s still very early for me to even be thinking about kids or pregnancy or anything of that nature. I’m a girl, though, it’s what we do. I’ve had dreams of being a mom, of raising my kids, being a better parent than my parents were to me. I’m now content with the idea of adopting older kids, ideally between the ages of 12 and 14. I feel these kids are the ones who usually get ignored at foster homes and adoption agencies, and I want to give those kids the chance that they probably never otherwise would have gotten at a real home, and love.

Every now and then I still feel bitter, though. It’s just another thing the diabetes has taken from me. But I’m resolute in my decision at making something unfortunate into something I will always be proud of. There’s enough kids in the world anyway.