How incredibly dangerous the stomach flu can be with t1d.

I have sat and thought about this blog post over and over while writing it in my head without putting it into actual text many times. I don't want to come across as ungrateful for my knowledge of type 1 diabetes (aka t1d) or ungrateful that my child has a disease she can, God willing, live a long lifetime with.  I do, however, feel it is necessary to share just how dangerous a stomach/gastrointestinal virus can be with t1d.  

My little warrior had a crazy day, which I blogged about on April 8th.  Well unbeknownst to me she was coming down the the stomach virus/flu as we all tend to call it.  She woke up at 430am on Saturday, actually made it downstairs and puked.  Then puked a few more times.  Then her blood sugar started falling.  After lots of crying and begging her to eat some smarties, just like glucose tablets, she ate a few and her blood sugar came up a bit.  Incredibly scary moments.

Honeymoon phase

My little warrior's pancreas is working overtime lately.  She has had only basal insulin all day, not a single bolus.  Honeymoon phase is insane and insanely frustrating! The other day her pump site somehow managed to get near a blood vessel, which I had no idea about until her bolus sent her crashing into the 50's then of course her dinner hit full force since the insulin was in and out so fast so then she shot to the 300's.  I love insulin pumps except for when crap like that happens.  I only knew that was the issue after pulling the site the next day and the cannula was full of blood.  Go figure.  Somedays I really feel like pulling all my hair out and just crying until my tears dry up but I know that won't accomplish a damn thing.  So I pull myself out of it and say this is just another day in the life of type 1 diabetes=just do the best you can do for today and tomorrow is a new day, start fresh.  After years of managing my own type 1 diabetes and now my little kid's diabetes I am not sure how I will have any sanity left by the time she moves out some day....then my worry will shift to worrying about her because she is not in my care anymore.  For the love of God PLEASE someone cure type 1 Diabetes before my baby moves out.   I wish there was a way to navigate the honeymoon phase but there is not and there is no way to even know or guess what it is going to do. I wish this disease was easier to manage and not like a total crap shoot most days.

Fitbit Versa 3 mechanical issue

I have had my Fitbit Versa 3 since November 2020.  It broke last night with a known issue.  I contacted Fitbit via their lovely chat feature within the app and told them the side button had stopped working.  They told me this issue is not something that can be fixed with troubleshooting.  Ah, it's a known mechanical failure of this watch.  I'm out of their warranty period by 4 months. My $200.00 watch was only good for 16 months.  Awesome.  So they sent me a measly discount via my email to buy a new one.  So glad I'm a loyal fitbit user.  For whatever reason I bought the Square Trade warranty when I got the watch, it was 45.00 and Square Trade deductible was 30.00...so I'm not really sure it was worth it but a new Versa 3 is now down to 179.00 go figure. So now I will wait for my watch to arrive so I can continue to be able to monitor my blood sugar and most importantly my little warrior's blood sugar with the ease of looking at my wrist and have it vibrate when she or I go above or below the limits I have set up. 

Insulin price cap and links to help you get your insulin.

"US pharmaceutical companies and insulin manufacturers react to proposed legislation that would cap insulin costs and prevent significant rises in the costs of prescription drugs."

https://diatribe.org/president-biden-supports-35-price-cap-insulin-state-union-address/?omhide=true&utm_source=diaTribe&utm_campaign=49480fc8ca-EMAIL_CAMPAIGN_3_7_2022_15_34&utm_medium=email&utm_term=0_22467a8528-49480fc8ca-15519791

"Here’s more information on how to get insulin at lower cost:

• How to Get Diabetes Drugs for Free

• Novo Nordisk: People who need help paying for their medicines can access these programs at www.novocare.com

• Sanofi: Commercially insured people are eligible for co-pay assistance programs for Adlyxin, Apidra, Lantus, Soliqua 100/33, and Toujeo. 

  • Uninsured people are eligible for the Insulin Valyou Savings Program

  • You may be able to access medications for free through the Sanofi Patient Connection program

• Lilly: Anyone who is paying more than $35 per monthly prescription of Lilly insulin can call the Lilly Diabetes Solution Center at (833) 808-1234 or visit insulinaffordability.com for more information."

Diabetes stigma and how hurtful it can be.

When I was on insulin shots I faced a lot of really horrible comments, horrible looks and I even once got turned into h.r. for taking a shot in the break room at a really crappy job I had.  They actually suggested I take my shot in the dirty germ infested bathroom!! Seriously.  Assholes. 

What have you had to deal with when taking your insulin shots?  

I have been on an insulin pump now for almost 13 years out of the 21 years I have had type 1 diabetes. I do not ever plan on going back to shots and all of the terrible comments, stares, looks of complete disgust and how much my staying alive was ruining their lives. Their lives.

I'm incredibly grateful for pump technology and now having my little girl on a pump because I really needed to spare her from some of the ugly sides of living with a life long incurable disease as much as I could. She still hates having the pump attached to her nonstop but she is enjoying not needing 10-15 shots a day, there is a lot of snacking when you never stop moving and burning your energy off, and now being able to go back to her normal ability to eat when she is hungry and not have to debate it for another damn shot.  I'm not sorry for saying insulin shots suck royally.  A pump is so much better, more accurate and easier to adjust and not live with the never ending lows from long acting insulin.  I seriously despise long acting insulin.

Don't stare at a person giving themselves an insulin shot, don't say shitty mean comments, put yourself in their shoes- look at the world thru their eyes.  It sucks, it's hard, we hate it...don't make this shit any harder than it needs to be.  Most of us know what we are up against, don't need the hey you can go blind or go into kidney failure or lose a leg or foot thing....yeah....do not need to hear that shit one more time. Seriously.  Especially not about how diabetes killed your family member...that is not helpful ever in any situation.  We know, we have also lost loved ones to this disease and it scares the crap out of us. 

Having my little girl get diagnosed with this damned disease had really ticked me off, made me angry again, lit a fire under me and makes me want to protect her from all the hurt that she has to deal with.  I can deal with this for myself but for her it kills me to my core, smashed my heart and reignited all the pain and suffering I went thru in the beginning. I don't know how to navigate this ship but I'm trying my best and I want to change the way people feel entitled to comment on other people's diseases or conditions in negative ways.  

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! 

 

Dexcom G6 App Compatibility Issues

If you are like me and bought an Android phone that is not compatible with the G6 app you can get it off Reddit for any phone.  Go to: https://www.reddit.com/r/diabetes/comments/8ja38m/oc_build_your_own_dexcom_app_now_with_g6_support/

You can also download Xdrip+ in place of the G6 app and you can also use Xdrip+ for Follow App if your phone isn't compatible.  I use Follow and Xdrip+ to follow my 5 year old because it gives much better predictions and it alerts me sooner for lows.  Get Xdrip+: https://github.com/NightscoutFoundation/xDrip. To use Xdrip+ for Follow you do not need a nightscout website to use it. You can use Dexcom data source.

#Diabetes #Dexcom #TandemDiabetes #Type1Diabetes #dsma

Living with type 1 and trying to wrangle your child's t1d at the same time.

The weight and stress of having type 1 Diabetes and having your child also have type 1 Diabetes is back breaking. My sweet little kiddo must be making some insulin again, pancreas is trying to sputter, and was low over and over last night and today even with no insulin on board.  Today I finally told the CDE that it's time to try an insulin pump.  Even nph is too powerful and every little thing the kid does causes a low and even when there may only be 0.5u or 1.0u on board....HOURS later.  On a plus side my hair that all fell out from diagnosis is growing back...I look like I am growing out like a half pixie cut all over my head, it's great.  Even the excitement of school is causing lows...how on earth are we suppose to navigate this mess....did I mention yet that I HATE type 1 Diabetes? 🤬  Starting the process to get the tslim x2 like I wear.  The kid needs smaller than .5u doses.

Free at home Covid tests for all but if you have type 1 Diabetes and cannot afford your insulin the government is ok with you dying.

The United States Government will mail anyone who wants an at home covid-19 tests sent to them for people who may or may not get sick for when, not if, they catch covid-19.  Yet the hundreds of thousands of people who live with type 1 Diabetes WILL DIE without insulin and yet thousands of us cannot afford the cost to pay for the life saving insulin we need to SURVIVE?! How about the Government mail insulin to everyone who cannot afford to pay for it?! This is insanity!!!