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Wednesday, August 14, 2013

You wanna trade me your big cell phone for all my crap? The real truth about living with Diabetes.

  • A funny thing occurred to me today as I have heard a few say things like this lately.  "I dont carry my cell phone on me because it is too big and too much of a hassle"  I wish I was only carrying my cell phone.  I carry my cell phone, Dexcom receiver and insulin pump and my purse because I have to  have my testing strips, glucometer, lancer, spare lancets, spare pump supplies, my currently open bottle of insulin, alcohol wipes, pump batteries, and glucose tablets.  Yep I'd trade it all in for the biggest clunkiest cell phone out there.

  • My insulin pump is attached to me 24/7 except for when showering and my dexcom sensor is on my body 24/7 reading my blood glucose levels. Do I love that I am able to wear all these awesome and hellatiously expensive technology, yes and no.  I dont love it really, I hate having this stuff on me all the time, but it's helping me live a longer life with less complications so I deal with it.  The days I switch out my sensor and pump at the same time and have nothing stuck to me feel alien, I dont know what life is like without all this crap anymore.  I love the feeling at the same time, I feel free from diabetes for just a few minutes. I love what the pump does for me, I love what my glucose sensor does for me but I hate having to wear it. I hate the stares and the people looking at me like some sort of freak.  I am not freak, I am a type 1 diabetic that wears a pump, I can tell you that much and I am using the latest technology to control my disease.  We are not meant to do the work our pancreas does and it's impossible to be perfect at it. 

  • Again, NEVER say to a person wearing a pump, OH you must HAVE IT REALLY BAD?!  Your Diabetes is so bad you need a pump, what the freaking heck?!  Also when people say to me, you had it bad when you were younger didnt you?  What does that mean?  Do you say to people who have lost weight and then gained it back, oh you were skinny but now you are fat again?  NO, it's cruel, rude and just not necessary to say, it hurts a persons soul or at least it does mine.  I may put of a brave face and humor your mean comment but inside it hurts me.  Diabetes is never good, its always destroying my body no matter what.  Fluctuations in a person's blood sugar does damage, so unless I eat like a rabbit 24/7 my blood sugar is going to go up and down with food, I would like to see you eat like a rabbit 24/7!  So in short I choose to wear a pump because I WANT to live as long as I can without crazy complications later on in my life and I WANT to use the best tools I can because if I had some other disease would I be using technology that was available 20 years ago vs using the latest and greatest?  Come on, its an easy answer. I WANT to be here for my daughter as long as possible and as long as God has planned for me. I DON'T WANT Diabetes to cut my life short or make the last years of my life a miserable disaster.
  • I am saying all of this for the other Diabetics that are too afraid to stick up for themselves, too afraid to ruffle anyone's feathers, too afraid of the response they will get.  Being a Diabetic is a scary thing and no one wants to have to fight that lifelong fight, but we are not given a choice.  We can choose the tools we use and the foods we eat, but we are all human, sometimes we want to eat that horribly unhealthy junk you get to eat all the time with no remorse.  So please DON'T ask, should you be eating that?  It's more like you should ask yourself, should you be eating that ALL the time?  I am eating it once in a great while! I will suffer the consequences for several hours after eating that (milkshake or candy bar or whatever sugar or carb laden food) while you go about your merry way and feel perfectly fine while I sit and feel a bit or a lot guilty or get a headache or stomachache from the blood sugar spike again while you go on your merry way and feel perfectly peachy keen.

  • Diabetes is scary, it scares all Diabetics to some aspect even if they don't say it or show it. It scares us because some night if we don't wake up because of a low blood sugar and someone isn't there to give us glucagon or they don't wake up easily to hear us having a seizure, we can go into a coma or even die.  Its scary.  My husband cannot take a night shift job, ever, because I don't want to die.  I am 32 years old, I don't want a low blood sugar to take my life of all things.  Its scary because the idea of complications from this disease later in life are very real. I have seen Diabetics missing legs, feet, toes, blind, in dialysis, have horrible leg and foot pain, have an ulcer or broken bone for YEARS, it scares me and it's a very real fear.

  • Keep these things in mind, for anyone out there reading this that is not Diabetic.  We are people too with real feelings that can get hurt and our Diabetes is ALWAYS on our minds, we never forget about it, we cannot forget about it.  We have to be mindful of it every single minute, we cannot put on the cruise control and if we do we are in a whole other world of trouble. Diabetes is not a disability, its an ability to live life a little bit differently and hopefully a little bit more healthy since we have to watch every bite we eat.  With the tools available to us today we can do a pretty good job kicking Diabetes in the butt, but it's still not a perfect system and not everyone has the ability to afford the latest tools out there.  I wont even talk about the inflated costs of Diabetes care in this country right now.  Anway that's how I feel and I think a lot of other Diabetics feel from talking to many of them on facebook Diabetic groups.  You are not alone, I am not alone there are many people out there in support groups ready to help you if you need.  Before Facebook and the Diabetic groups I thought I was alone and no one understood.  Now I feel much better about my Diabetes because of the support and because of this support I have learned to DEMAND better care and demand my insurance to cover a pump for me, cover a glucose sensor for me, cover my 300 test strips a month, and find health care providers that actually give a CRAP about ME and not my insurance footing the bill!  So if you need help or support, join a group online, it will help you by leaps and bounds if you reach out and ask for it! 

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