So much change...

Talk about pathetic. I have not written here since February of this year! Wow. It's been five months. So much change and so much to report. First off, I am currently five and a half months pregnant with twins! My husband and I are incredibly excited, a tad terrified, but really excited nonetheless.

Being pregnant...with twins...with type 1 diabetes. Hmm. Not really the easiest thing in the world. The first trimester, blood sugar wise, was actually pretty good. I had severe morning sickness (which btw should not be called morning sickness rather 24-7 sickness) and the only thing that made me feel better was to scarf down carbs at all hours of the day. Needless to say, heavy carbs and limited exercise do not a good blood sugar make. That said, I kept my a1c in the 6.4 range almost the whole first three months. Ahh and then we arrived at the second trimester and more specifically the 5 month. Insulin resistance is in full effect. Every morsel of food I eat raises my blood sugar significantly-including low carb or no carb foods. Once my blood sugar gets into the 200's or so, it's virtually impossible to bring it down. I change my pump almost every day and am even then my skin is irritated when I take it off. And worse, with twins you have to eat ALL THE TIME! You are encouraged to eat between 3000-3500 calories a day. I was never a big eater before this and certainly not a big carb eater so this has been a challenge to say the least. The doctors want you to eat high fat foods like whole milk etc which is also weird and hard to adjust to.  When my babies are going through a growth spurt, I wake up at like 2am, 4am and so on and have to eat a piece of toast with peanut butter or a granola bar or drink a large glass of milk. I have gained a healthy amount of weight so far-I think I'm at 28 pounds gained which, when I say it out loud is INSANE. The pregnancy books that are stacked to my ceiling in my bedroom tell me not to focus on my body image but on the profound thing (s) happening in my stomach. Easier said than done when getting dressed has gone from cute outfit making to essentially sheet wrapping.

People keep saying how lucky I am because it must be so fun to eat whatever I want. Trust me, it's not. It's fun to indulge in foods I wouldn't normally eat but it is not fun to wake up and have to walk down the stairs with my enormous belly, eat a sandwich, somehow get back up the stairs and try to fall asleep...only to repeat the whole scenario one hour later.

Other than all that, it hasn't been that bad. The amount of pressure that I feel at all times caring for and growing these babies while trying to control my diabetes can be overwhelming. The guilt that comes with a 200 or a 300 blood sugar stops me in my tracks. When they stop moving for a little while, I'm convinced I've hurt them because of my careless ways. I'm trying really hard though. I test my blood sugar about 14 times per day and my little fingers are covered in poke holes and bruises. I read today that at 22 weeks their little pancreases are forming. Fingers crossed that they match my husband's instead of my broken one. The thought of their tiny pancreases is pretty darn cute :-) (Even though I have no idea what a pancreas really looks like and I imagine it's gooey and gross).

I've found with diabetes, it's easier to just put my head down and get the work done. In other words, it would be so easy to get frustrated, really really frustrated, and give up or collapse in a heap of tears and cuss words on my kitchen floor at the end of a particularly hard day. And sure, I keep going because of the beautiful lives living in my tummy. But in less idyllic moments, when I feel a breakdown coming on, I try to put my head down, wipe the blood off my stomach and put on the replacement pump without really engaging my thoughts. Otherwise, I don't know that I would make it through this whole pregnancy. The thought of working as hard as I am working through the end of this pregnancy is daunting. If I focus on the day in front of me, hell the blood sugar in front of me, I feel like I'll make it. I follow another blogger who is fantastic at http://www.diabetes24-7.com/ who says she deals with diabetes one blood sugar at a time. That's really a brilliant way to summarize life with this disease. If you think about it as this vast ocean in front of you-a sea of shots and tests and eye exams and bad news and blindness and amputations and fear, I think every one of us would crawl under the covers and never come out.

However, if you focus on the disease, hell if you focus on life, one blood sugar at a time, one moment at a time, it's bearable. And with that, it's time for a finger stick :-)

My companion, whether I want it or not.

Like many type 1s, I put off going on a pump for as long as I could. I remember endo after endo encouraging me to try pump therapy and promising me that my life would be "easier".

"You can eat pizza in the middle of the night!"
"You don't have to wake up at the required 8am to do a shot!"

Honestly, all I heard was "You will be attached to a small mechanical box for the rest of your life".

And yet, here I sit eleven years later next to a small mechanical box that will, indeed, be with me for the rest of my life. And I can't imagine regressing and trying to manage my diabetes with shot again. To put it bluntly, the pump saves your life. It allows you to control your diabetes as opposed to your diabetes controlling you.

All that said, because let's be honest, I am certainly not the first person to comment on the pump in this way, I have always been struck by the physical and psychological connection I have to my pump. Since I was a little girl, I have always been attracted to anthropomorphism. I named almost every one of my families Christmas trees and mourned their deaths every new years when they were sent to the recycling bin; I have regular conversations with both my dogs and feel a connection with both of them that rivals many of my relationships with actual human friends. And because of all this, I have begun to view my pump as a little friend of mine-one that makes me really angry sometimes-one that makes me cry and curse my hand in life-but one that ultimately keeps me healthy. One that travels with me every day and rests against my skin during some of my toughest hours. Whether they be at work, or at home, I have been and continue to be struck by the anthropomorphic relationship I have with a piece of machinery.

I've thought about this relationship recently because I've felt compelled to write something for children suffering from my disease. I can't figure out where I fit in professionally, but I feel this urge, this utter and complete urge, to give to young type 1s what I couldn't find anywhere when I was their age. And that frankly, is someone to talk to. Someone who understood, really understood, not the way my parents or my endo or my friend's parents claimed to, but someone who genuinely understood in their core what I was going through.

There is a space for this sort of work-I'm not sure if it's through children's books or through group therapy, but there is a space and a need for this sort of support. I hope I can figure out where I fit in

Fair?

Second blog. Pathetic amount of non-blogging actually. I am feeling pretty low today. I'm frustrated, I am angry and I don't think it's fair that I have to deal with this. Then again, what is fair? I was raised by a mother that never let us entertain that phrase: "This isn't fair." She said again and again, what is fair Anna? Is it fair that you have plenty to eat on your plate at night and others don't? Is it fair that you got a great education at a fantastic school and didn't worry about student loans? Is it fair that you have a great life? Talk about putting things in perspective. And yet, seventeen years after being diagnosed with diabetes, I find myself struggling to make peace with my life. I don't know if I'm religious. I have always turned to God for comfort and advice and friendship. And yet, I look up to the ceiling and ask why this is my life? Why do I have such a large, unattractive bruise on my stomach from repeated pump insertions? Why is my blood sugar 220 this morning after eating at 135 and calculating perfectly? Why will this be my life forever? And furthermore, if this is my life, if this what the future (and a terrifyingly short one at that) holds, then cut me a break elsewhere. Let me have the things I want so much right? That's fair. That's what I thought fair was at least. And this lack of "fairness" forces me to question everything I thought I knew.

You hear people say, "things happen for a reason". That has always bothered me. One can say that because things, inevitably, worked out. In other words, if your house was swallowed up by a tornado and you lost everything you'd ever had, do you think you would still be standing alone among the rubble of your past saying "well, everything happens for a reason"? No.

I don't know if I have diabetes for a reason. I know it has literally shaped me at every stage of my life. It has made me a compassionate, caring person who empathizes deeply with those who are suffering-specifically from disease. And I'm certainly thankful for that. I like myself. But I find myself today, at 28, utterly obsessed with the thoughts of what life would be like had I never been diagnosed. I look at my friends and I watch them reach without thought for a second handful of chips, or another piece of chocolate and I can't help but play a game that has no function-no point. What would life be like if I were them? What would it feel like to eat and play and live without thinking first? Without planning first? I know the old sentiment that I have no idea what's going on in people's personal life. I don't know what they are struggling with. But they aren't struggling with diabetes. They eat at leisure-whenever they feel like it. They get pregnant without a second thought and eat whatever they want during the pregnancy. They don't worry that their child will have spina bifida or other horrific issues. They just go on without a second thought.

No matter what you say, or what you believe in, that isn't fair.

Introduction: My first Blog.

Well, my new year's resolution, albeit a few weeks early, is to do something everyday that scares and challenges me. Blogging is just that. Furthermore, blogging about an issue that is near and dear to my heart is even scarier.

I have had type 1 diabetes for eighteen years. I was eleven when I was diagnosed. I remember that day entirely. It's sort of like a carved out picture, or video in my mind that no matter how much time elapses, is still crystal clear in its replay.

The night before my doctor's appointment, my mom crawled in bed with me and said "No matter what happens tomorrow Anna, remember, everyone has a dark cloud in their lives. You have no idea what's going on behind closed doors in people's personal lives and so you must know that everyone struggles with something." I didn't grasp what that meant at the time.

The next morning, we stopped at McDonalds before the appointment, and we ate inside instead of in the car which was strange because my family never did that. The daughter of two big time hippies, I never grew up eating junk and so when we did, we knew it was for a special reason. I refilled my regular coke at least four times and used the bathroom at least twice that often. My mouth felt sticky like my tongue was coated in syrup or honey. And I had no energy. I remember telling my mom I felt like a "dishrag".

I don't remember the actual tests in my pediatricians office, but I remember he told me to wait in the waiting room while he talked with my mom. I read through an old edition of "Highlights" magazine. Then, they called me back. We sat in a strange room that I had never been to before. Dr. Shuler had been my pediatrician since I was born and never had I been in this backroom office of his. In the room, Dr. Shuler, my mom and me. My mom looked at me, and gosh I remember this like it was five minutes ago, and she said in her incredibly practical-straight to the point-voice: "Anna, you have diabetes. You're going to be fine. We need to go to Egelston for some more tests and dad and Theo (my sister) will meet us there."

I didn't cry. Or at least I don't remember crying. In fact, I don't know when I first cried. Whether it was after my first injection, or after a finger prick, I don't know. I remember telling my mom that Stacey from the Babysitters Club had diabetes and she was a model with great clothes from NYC and had tons of friends and boyfriends. And I remember that made me feel better for a moment. My dad and sister met us at the hospital and both were abnormally sweet and reassuring. At the time, I don't know what I felt about how they were acting but now, eighteen years later, I can see it for what it was. They were scared and sad and didn't know how to make it better. And thinking about that now sort of breaks my heart. I spent two or three nights in the hospital and my mother stayed there with me the whole time. We watched "Beauty and the Beast" and it was great because I was technically too old for a movie like that but I was also the kind of kid who played with dolls and barbies until after junior highschool. Even then, I remember feeling safe and warm and comforted in that hospital room next to my mother while Belle sang a song about a "Provincial Town".

My sister brought some of my stuff from home. A stuffed animal that I still, at 28, sleep with every night. I had a couple R.L. Stine "Goosebumps" books. And I had a walkman. The day I was supposed to check out, my nurse sat the whole family down to teach us about injections and finger sticks and ketone tests. I had my walkman on the whole time. There was no recognition on my part that I had a disease. A life long disease. Frankly, this was my parents problem and I was annoyed to be bothered while listening to music and reading my book. The nurse had everyone practice giving a shot and my parents and sister took water shots. I thought the whole thing was stupid and when the nurse asked if I could please remove my headset and listen, I rolled my eyes and complied.

Then we went home. And that night it sort of became real. It became true. It became our problem, not the doctor's, not the nurses, not anyone else's but ours. We sat at the dinning room table with the various needles and alcohal swabs and tried our best to emulate what the nurse had done perfectly just hours before. And it was awful. The shot hurt. The supplies were annoying and hard to keep track of. The low blood sugar I had later that night felt terrible. I was sweaty and shaking and disoriented and frightened. And my parents tried so hard to comfort me and to make it ok and tolerable.

And it has completely changed my life. Of course it has right? That seems like a obvious statement. And yet the amount that this disease, that this abnormality of my pancreas has affected my life and who I am as a person is immeasurable. And that was only day one.