Im feeling beat down

#Diabetes #Dexcom #TandemDiabetes #Type1Diabetes #dsma

 I try so hard not to let Diabetes beat me down or make me feel like I am losing control but this week has been really hard, like crushing my heart hard.  I know having my little warrior on an insulin pump will give her the best life and best possible outcome for longevity with type 1 but holy crap it is hard.  She has cried every day about how much she hates Diabetes, hates having the pump attached to her and hates the way the site feels.  It is such a huge adjustment and really huge when you are little. 

I remember adjusting to the pump was hard for me and pump sites always hurt but I could cope with it because I was an adult.  Every time she cries I swear my heart breaks a little bit more for her but I put on my brave mom face and try to let her know it will be ok and she will get use to it, even though it is bullshit she has to get use to it.  

Why don't we have a cure for this disease yet! Every time someone says something insensitive I try hard to brush it off but man it is like a dagger to my heart because I hate this shit too.  All the harsh things people say start to add up.  They all compile in my brain and I know someday they will crush her too.  Diabetes isn't unlike any other disease and I don't understand why people feel like they can say horrible things to the people living with it. 

Type 1 Diabetes sucks enough as it is without people making comments about how they could NEVER do it or NEVER wear a pump, NEVER take a shot, NEVER be able to count carbs, NEVER be able to poke their finger, NEVER this or that or the other.  NEVER is NOT AN OPTION!  You do it or you DIE.  

Let that sink in, you do it or you die, there is no other option, no choices, no vacations, no breaks ever. Me and my little warrior will be diabetic for the rest of our lives and we will fight the complications and blood sugars every single day.  To add the bullshit people say on top of it is just too much.  Tell people they are brave, strong, courageous and that they are doing a great job living with Diabetes and that if you had Diabetes yourself, you would hope to do as good of a job living with it.  

I have never once ever heard anyone say the mean terrible things they do about Diabetes for any other disease.  I have never once seen a meme or joke about any other disease online other than Diabetes.  I have never heard anyone joke about getting Cancer, MS, Parkinsons or any other disease, but yet people joke about Diabetes and how doing this or that will give them Diabetes.  Its just not funny and its confusing as hell to little kids living with this shit.    

Stop joking about DIABETES, its not funny EVER and it sure the hell isn't FUN to live with.

Tandem Control IQ Alarm Fatigue

@TandemDiabetesCare #tandem Guys/gals at Tandem for the love of GOD can you PLEASE PLEASE PLEASE let us be able to turn off CONTROL IQ ALARMS?!?!?! They are literally keeping all of us awake way too often and too much at night.  I have to set all my alarms to vibrate other than CGM alarms so I can get some sleep but the damn vibrations for control iq still wake me up and many of us up and we are GOING INSANE!  I am literally nearing shutting control iq off at night just to get some sleep! 

My little warrior is on an insulin pump

My little warrior's insulin pump went on Friday.  Everything from my perspective went well but how on Earth do I help her accept the feeling of an infusion set and the level of discomfort it brings along with it?  She is thin like me so I am always aware of my site and sometimes they hurt no matter what, but as an adult I can cope with it.  This is the 2nd most stressful part of having your child plus yourself have type 1 diabetes.  The first was most definitely diagnosis and giving her multiple daily shots. 

Diabetic eye exam day

Had my oh so marvelous dilated diabetic eye exam today and got the all clear.  Eyes haven't changed and no leaky blood vessels!! That is always GREAT news! Sitting inside with sunglasses on since my eyes currently look like they are all black and light is not my friend. 🤣 

My little warrior's pump arrived today

My little warrior's Tandem x2 insulin pump arrived today. Today is both a good day and a really heart breaking day wrapped into one.  

My child is excited and I am hoping to be able to keep her upbeat and positive about it.  So far I think I have done a really good job. It would help tremendously if people would stop making the comment about how horrible it truly is.  We know, we all know TRUST ME, but staying positive helps everyone, especially her.     

Positive things people could say would be like oh you have a Dexcom that is awesome or you are getting a pump that is going to make it so much easier and free you from ( she gets 5-10) insulin shots a day!  I don't want this disease to knock her down or take away her very happy and spirited personality. 

So if you know us, try to be positive and upbeat, don't make her feel any worse about it. We are excited for her to have a better tool to control her diabetes and have less low and high blood sugars.  

So here is to kicking Diabetes' ass a little bit more! 

On a side note THANK YOU Kaj our Tandem Rep, Sue our CDE and Dr. Alexandrou for letting me push our treatment plan faster to a pump because the smallest insulin syringe isn't small enough for my small fry and using NPH has been great but that 3 hour peak has been a bit of a wild ride. I would have lost my mind without the team at Iowa City Children's Hospital. You guys ROCK!