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Wednesday, May 20, 2015

Type One Diabetes - My First Year

Today is my one year diaversary.  One year of living with and managing type one diabetes.
Last week I wrote some reflections about pre-diagnosis (see that post here).  I shared most of my initial story in this post here, and shared my thoughts on choosing the t:slim insulin pump here.
And now I thought I'd just share some thoughts about my first year with t1d.

I guess I'll start with the not-so good parts about t1d.
The most challenging thing for me is the constant ups and downs.  No matter how hard I try sometimes to keep my numbers in range, there's always times (sometimes entire days or weeks!) where nothing seems to go right.  The feeling of high blood sugars is horrible.  When I have super high blood sugars I feel I've been run over by a fleet of semi trucks and then backed over again (then repeat that 29 times).  My head gets foggy and heavy, my vision blurry; I get nauseous and can't concentrate on anything at all.  Whenever that happens and I give myself a correction bolus of insulin it feels like it takes hours days years (!) to finally kick in and bring my numbers down.  When my numbers do finally come back down I'm still left with this gross cloudy feeling.
When my bg goes too low on the other hand and I experience hypoglycemia, that's harder to explain.  When it's really low (like below 50) the feeling is nearly unexplainable. Sometimes I just feel shakey and get cold and sweaty but then when it's really bad I start to lose all my ability to function at all.  I can't form any real sentences, I can't communicate at all really.  Heck, I can barely think at all.   It just feels like I am shutting down and sinking into a hole and, rightfully so I suppose since my body actually is shutting down when that happens.  But, with some sugar (usually some Trader Joe's chocolate truffles, yum!) and a little time, my bg climbs back on up and I can begin to function again.

Another thing that can be overwhelming besides the constant checking and worrying about my bg is being attached to things 24/7 and always checking numbers.  When I was first diagnosed I said that I'd never choose to be attached to some thing everyday and rely on some little machine to give me insulin.  But then, after giving an insulin pump a try I ended up absolutely loving it.  But even though it's made insulin calculations easier and allows for tighter control it's still sometimes difficult to always have to remember I'm attached to 24inches of tubing and have to always find a place to clip the darn thing.  Oh and then there's also getting the tubing caught around stove knobs, door handles, the pump un-clipping from wherever I have it clipped to and falling down nearly yanking the whole site right outta me.   Also having little marks all over my belly and having these robot looking things attached to me just takes getting used to.  Making time to change the site every 3 days and changing the site of my Dexcom sensor once a week isn't so bad really but sometimes it means running a bit late in the morning because of a last minute change.  And, though I really have gotten used to pricking my finger throughout the day and whatnot, inserting the Dexcom and the site is still pretty painful (but not too bag) so I usually just don't think about it!

When I first got my Dexcom continuous glucose monitor and my pump it was so exciting to have all this new data and was so cool to be able to see where my blood glucose is every minute of the day. But with that, it also overwhelming and can cause lots of self-judgement.  Seeing those dreaded double arrows up or down and hearing Dexcom beeping at me - yelling at me that I'm doing a horrible job managing this diabetes beast can be tough.  But I've been trying my best to take things in stride - to realize that a few days with a bg that went over 200 isn't the end of the world and my a1c isn't going to be completely ruined because of it...I am not a failure because of it.  It's just a number.  Yes, these numbers are really important number but they are not a measure of my self-worth.  Some days diabetes certainly wins and takes over and no matter what I do and how hard I try I just cannot win.  Some days things seem completely beyond my control.  But, that's just how it goes!  At the end of the day, though t1d is a very big part of my life, I am not my disease. 

Now, this leads me to some of the good things I've come to love about having t1d.
First, the things that I've enjoyed most is meeting other people with type one diabetes.  The instant connection you feel to others is so amazing!  Other people with t1d are the only ones who truly understand the struggle of managing this monster - they understand the day to day struggles with high and low numbers and they understand how it feels too.  The unexplainable feelings of having a bg at 268 or 42 is a feeling that doesn't need to be explained between type one diabetics, it's a feeling we know all too well. 
Also, now that I have an insulin pump I usually always have it visible - whether clipped onto the waistline of my pants/skirt or clipped onto a belt at my waist when I wear a dress.  And, this is something I've come to be proud of actually - it's really become a part of me.
Though, it will never truly be normal being attached to something 24/7 and, it's not normal to prick your finger multiple times a day, it's not normal to have to stay within a certain range on a graph to really feel well, it's not normal to have robot lookin things on your belly that stick out when you wear form-fitting clothes, it's not normal to have a whole cabinet in the kitchen and a whole drawer of insulin in the fridge full of stuff keeping ya alive, but this is my reality.  What is normal anyways?  I guess I'm not sure, but this is my new "normal".  I am alive thanks to my hard work and diligent managing of this often overwhelming autoimmune disease, I'm alive with the help of these robot things attached to me and the 30 or so units of insulin I have coursing through this 24 inch tubing each day.
I feel healthier than I've ever felt in my life and happier than I've ever been as well.

I am a gal that loves to drink coffee, that flowers, that loves philosophy.  I'm also a gal with an incurable autoimmune disease.  Today I reflect on all that I've learned about type one diabetes this past year, all that I've learned about my body and myself as a person.  And, the most important thing I always need to remember is that, I am greater than my highs and lows.  (and yes the tattoo is on my middle finger because well...you know!)

7 comments:

  1. Congratulations on a strong year. That must be really difficult, scary stuff. Dependence is a weird thing, some times good, and sometimes so frightening, but you wear it well.
    Apropos of nothing: Would you maybe consider a post about your other tattoos? I think they are beautiful, and would love to learn more about them!!

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  2. Thank you so much for being so forthcoming about your experiences. I'm 30 and suffer from multiple chronic diseases and it can be really isolating being ill or constantly worrying about/managing my health while my friends are living regular 30-something lives. We all have a struggle (or two!) to get through in life, and you sharing yours helps me realize I'm not the only one. And the meaning of your tattoo is so inspiring! I hope you continue to find better health and further success with your treatment!

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    1. You are most definitely not the only one! You are strong, always remember!
      Thanks for your kind words.

      xo,
      K

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  3. I am so happy that I came across your blog! I was diagnosed with T1D in April at the age of 21 after being very sick and reaching a glucose level of 540. Some days are hard, even weeks on end sometimes but it's comforting to know that there are other people out there living with this awful disease. Thank you for sharing

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    1. Hello! So happy to have you here! There are lots and lots of us out there dealing with this monster of an autoimmune disease and we are all so strong! Keep your head up!

      xoxo
      K

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  4. I love this! Thank you for writing about your experience. I've had t1d for eight months and was considering getting the same tattoo.

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  5. Hi! This is absolutely amazing. I actually came across this on Pinterest looking at your tattoo. I loved reading about your journey and experience. Very beautiful and well said. Also, I was planning on getting the tattoo on the side of my finger as well and was wondering if it has since faded over time since some say it does? Thanks!

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