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Friday, December 23, 2016

Always is a really scary long time.

I have a lot of thoughts and I don't like any of them and I can't talk to anyone about them because I don't want to be told to feel better. I need to figure out these feelings but I don't know how. I need someone who I can talk to without limit or thought who can listen and understand (REALLY understand).

I don't know if it's because I'm wearing a CGM in addition to my pump. I don't know if it's because I spent all day looking through old family photos. I don't know if it's because it's almost Christmas and also almost New Year's and things always seem to change when that clock hits midnight.

Maybe it's because I can see both my sites and it breaks my heart that if I go ahead with a CGM, which I'm sure is the right decision for me because I have become way less obsessive, way more on top of things, and feel so much better about where I'm at all the time, then I will have to wear these two sites for maybe the rest of my life. I'm going to be an adult and wearing $10 000 worth of medical devices every single day and night. (Maybe it's because I'm realizing how much this damn disease costs.) Part of the reason I wanted to go back on pens was to not have to wear these things, because maybe part of me thought that not wearing them would make it go away. Well obviously it won't, and as my doctor so frankly pointed out, it will actually make it go away less because control will not be as good and way more thought will need to be involved.

Maybe it's because there are pictures of me when I'm a baby with my aunts who also have Type 1 and that makes me incredibly sad because not only is there nothing to see (no pumps, no CGMs, no visible blood sugars), but they've been dealing with this for SO LONG and I can't even begin to understand how they've done that. I don't understand how I've already dealt with this every day for seven years. I don't understand why it's only sinking in now that this is a forever thing. It's never going to stop me - I'm still going to live and love and laugh and have a great career and wonderful children and I'm going to travel the world and take the train across the country and enjoy a billion Christmas mornings with my incredible family - but it will always be there. I will always have to test before I eat. I will always have to take my insulin. I will always have to go see an endocrinologist (which is another weird thing! My peds ladies and I always had an end in sight to our relationship, much as that still breaks my heart. But my endo going to be my endo, she'll be the one who tells me I can get pregnant and who will help me with all that (probably, I've heard she does maternity endocrinology too) and it's just so strange to me that when I'm a mum and an established RN and a grown-up and all these things that I will still be going to see her).
And the thought of 'always', of 'forever', is something that terrifies me.

I think maybe because 'THE CURE' was so promised when I was first diagnosed. Maybe that's why. Maybe it never sunk in that this could be forever because everyone said it would be cured in five years. And obviously it hasn't been, but I do believe that it will be in my lifetime. Or at least they'll find a treatment option that requires so little involvement that it's almost close enough. I do believe that will happen, but until then, this is my forever. And I can't process that.

Maybe it's because I've been reading so many stories about little kids who will have been dealing with this literally as long as they can remember. Maybe it's because I'm not the 'youngest diabetic' anymore like I always was at camp. Maybe it's because the times when I can remember what it was like to not have diabetes are becoming few and far between, Maybe it's because I'm growing up and everything's changing (still).

Maybe it's because I'm starting to realize that I literally do not know who I am without diabetes. I would still be in Girl Guides. That's the only thing I know. Would I have gone travelling as much as I have? More? Would I have not gone to college and gone to explore the world instead? Would I be majoring in math? Or art? Would I have moved across the country for school? Would I be a knitter? Would I have the job and goals and dreams that I have? Would I be anywhere near who I am today?

Maybe it's because I haven't had actual human contact with a T1 friend for significantly too long. I'm meeting a few new people with T1, but we're missing that established contact.

Maybe it's because I'm realizing there are SO MANY people dealing with this, but it's still so invisible. So many people that I've talked to recently have a connection that I never knew.

Maybe it's because I am still hardcore struggling with transitioning to adult care. This sucks so much. My nursing career goal is to make this process better for everyone involved because the amount of emotion I am trying to deal with is too much.

Maybe it's just because my pancreas gave up on me and although I'm realizing it really wasn't his fault (srsly guys it was our immune systems the pancreas is just as much a victim as we are) I'm finding it really hard to take his place and I'm starting to give up on myself.

Maybe I'm depressed. Maybe I'm lonely. Maybe I'm just scared. Maybe my immune system is attacking the defenses I put up in order to effectively emotionally deal with this and now everything's crumbling and I don't know how to fix it.

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