Up All Night

When he has a number in the 40's, its very hard to sleep that night.  I will usually stay up and check him mid-night to make sure he's ok or I will set an alarm to get up and do a check.  I especially worry when the low was out of nowhere.  No extra activity, carb counts were right, I always want an answer to an unexplained high or low, but I guess I'm not always going to get one..

A Battery is Our Lifeline

Most people use batteries and think nothing of it but the person I love's life depends on an AA battery.  His insulin pump is powered by 1 AA Energizer Lithium Battery.  We need to change the battery about every other month and when the battery is low it will give him an alarm.  The alarm means he has a minimum of 30 minutes of life left in the battery.  What is the maximum?  I don't know (haven't got around to reading hundreds of pages in the manual yet) but all we really need to know is that we need to get a new battery asap & hopefully within 30 minutes, don't want to risk any longer than that.  So I go to our supplies drawer and no extra battery, then I look in all the other drawers, still no battery.  So we hop in the car and off to get one.  I'm usually pretty good at making sure all the supplies are stocked but sometimes life gets in the way.  Thankfully our car started up and we are close to a store.  The "what if's" are usually what give me anxiety.  What if the car didn't start, what if there was a snow storm and we couldn't get to the store, what if the store was out of those batteries?

My Heart Aches

He's so tired.  He brushes his teeth then lays down to go to sleep but he forgot to check his blood sugar so I do.  He's at 94 so I go in the kitchen to get him some juice.  As I'm sitting there watching him drink the juice my heart aches & tears fill my eyes (but he can't see that without his glasses).  I know how bad juice tastes after you just brushed your teeth (ick) but my heart aches because he HAS to drink juice before going to sleep.

Most days I'm fine and go about the day as we always do, but there are those moments when you just look at the person you love that has type 1 diabetes and wish there was something you could do.  I often feel helpless.  I try so hard to get his basals right, carb count accurately, but sometimes it just doesn't work and they end up with a high or a low.  Just today, he was at 43.  Why?  He carb counted correctly, no more activity than usual, his basals have been set for a while....There just seemed to be no reason.  Was it a bad strip?  All these questions go through my mind.  My heart aches for him right now but he doesn't know it.

I feel like I hit the lottery!!

There are test strips scattered all over our house.  Before I throw them away I always check to make sure they are used first.  With test strips being about $1 per strip, can't afford to waste any!!  Today, for the first time I actually found one that wasn't used, I felt like I hit the lottery!!  LOL!!  Hey, if you saw $1 laying on the floor you'd probably pick it up to.  ;-)

Type 1 Diabetes Awareness Video

Bedtime is the Scariest

His blood sugar check before bed was 86, so he drinks some apple juice to bring him up.  We are in the process of trying to figure out what will bring his blood sugar up and keep him steady.  It seems that when he drinks juice at night, it will bring him up during the night then by the time he wakes up he's on the low end again (80's).  Bedtime is the scariest for me, he does not have a CGM yet.  Our health insurance would not pay for the Dexcom.  I guess it wasn't "medically necessary".

This is what I have to say to ALL HEALTH INSURANCE COMPANIES - Live in our shoes for a day, 1 day.  Then tell me how it feels to wake up in the middle of the night to check your loved one's blood sugar, you will soon realize that you don't even need to set an alarm most of the time, instincts kick in and you "just know" you need to check.  Tell me how it feels to run around outside, play, go for a walk, to do something spontaneous, only to come back home to a low blood sugar.  Tell me how it feels to lug "your emergency pack" around with you, AT ALL TIMES.  Tell me how it feels to have to suspend your insulin pump before getting in the shower.  Tell me how it feels when your loved one is in the emergency room because his or her blood sugar got too high or too low.  Tell me how it feels to look at an emergency glucagon pen thinking that one day you may have to inject that in someone you love if they are unconscious due to a low blood sugar.  Tell me what it feels like to have tears fall from your eyes because you love that person so very much and it breaks your heart into a million pieces to see them deal with this every minute of every day. THEN TELL ME IT'S NOT "MEDICALLY NECESSARY" TO APPROVE A CGM THAT COULD IMPROVE THE PERSON I LOVE WITH ALL MY HEART'S LIFE, SOMETHING THAT COULD POTENTIALLY SAVE HIS LIFE.  TELL ME!!

Forgot to Change Site

I dropped him off at work and a couple hours later I get a call saying he forgot to change his site this morning.  He had about 2 units left so that gave him a little more than 2 hours and he could not eat anything with carbs in the meantime.  He is at risk of getting DKA (diabetic ketoacidosis) within hours of no insulin delivery.  Thankfully, I was at home & we live very close to his work so I packed up the site, the wipes, the cartridge, the insulin, and the tegaderm and delivered it to him.  

Not too long ago, we lived over 25 miles away from his job and did not have a car, what would of happened then?  I worry myself so much.

Measuring Cups

Measuring Cups can be a diabetic's best friend.  We recently purchased a set of measuring cups since we only had one.  We've only used them a couple times and the ink from them is always washing off!!  What's the point of a measuring cup if it can no longer measure?!  Of course, who saves receipts for measuring cups but that's just not fair.  I think I will be sending an email soon for a refund.

Ketone Testing

Testing blood for ketones can help detect DKA (diabetic ketoacidosis) which is a serious medical complication of diabetes caused by low insulin conditions.  

Most people test for ketones if blood sugar is above 250.

Readings below 0.6 mmol/L ~ Normal Range

Readings 0.6 to 1.5 mmol/L ~ Indicate the development of a problem that may require medical assistance.  Follow your doctors recommendations.

Readings Above 1.5 mmol/L ~ Indicate high risk of DKA.  Follow your doctors recommendations.

Low While Sleeping

BG check before bed was 99 (his target is 140 at bedtime) so he drank some juice then went to sleep.  About 1am something just told me to check him, I did and he was at 59 so I gave him more juice.  As I was trying to figure out the low, I realized he forgot to temp basal for the walk this evening.  I am very angry at T1 right now.  What if I wouldn't of checked??  He doesn't get up till about 630am.  These are the times I feel like Type 1 just smacked me in the face.  No matter how good your control is it's always there lurking every minute of every day.  Can't wait for the Animas Vibe with the integrated CGM to be released in the US!  We can't risk anymore lows, nobody should have to!!

Also, I wish the pump told you how many carbs to eat to bring you back up to target instead of just saying your low.  I'm in the process of trying to figure out how many points 1 carb brings him up. Everyone is different but has anyone ever tried to figure it out?

Which Pump?

Doing research when choosing an insulin pump can be quite overwhelming.  I've put together some things that may help someone just starting to do research....

- Discuss it with your endocrinologist (I specifically say endocrinologist because they are the experts)

- Do as much research as possible, get a notebook & write down what you learn, talk with others that wear the pump you are researching

- Make a list of questions and things that are important to you (remember all the pumps do the most important thing - deliver insulin, but features on each one may vary).  The Animas Ping Pump is waterproof, the Medtronic MiniMed Paradigm Revel offers an integrated CGM, and the OmniPod is tubeless.  Don't you just wish there was one pump that had all those features?  =)

- Visit the pump companies website and get a free information packet mailed to you

- Have the pump company check your insurance to see if it will be covered (having the pump company do this is better, they are the experts in dealing with insurance companies)

- Be patient.  Keep in mind your endocrinologist office may want you to take classes on pumping & the process is usually not instant.  Also, keep in mind that getting a pump does not mean you don't have to check your blood sugar.  It usually takes time to get the pump settings correct so you may need to check your blood sugar more than usual.

- Check out the pump companies policies.  Do they offer a loaner pump if going away on vacation and if they do, is it free?  What happens if your pump breaks?  Do they offer email customer service for non urgent issues?  What is their warranty policy?  If a updated pump is released after you get yours, do they offer an upgrade and if they do, how much will your out of pocket expense be?

- Keep in mind the things that are important to you.  Choosing a pump is usually personal preference.

One thing to keep in mind is reservoir/cartridge size, one of the pumps has the ability to hold 300 units of insulin in it as opposed to 200 units, think if this is important to you.  Would you even use 300 units in a 2-4 day time span?  Most doctors/pump companies recommend site changes every 2-4 days and most also recommend to do the site change and the reservoir/cartridge change at the same time, so you may not even use 300 units in the recommended time span.  However, you might use that much so keep this in mind to determine if this is important to you.

I have compiled a comparison list of 3 popular insulin pumps available in the US ~ Animas Ping, Medtronic MiniMed Paradigm Revel 723, and OmniPod ~ check out the list by visiting this link ~ http://www.type1diabetesawareness.org/insulinpumps.htm

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I'm am creating a network for Type 1 Diabetes Awareness.

Blog ~ type1diabetesawareness.blogspot.com
Website ~ www.type1diabetesawareness.org
YouTube ~ www.youtube.com/type1diabetesaware
Facebook ~ www.facebook.com/type1diabetesawareness

Free Clinic

Last year we were in a bad situation, we were low income and without health insurance.  There was no way we could afford insulin, let alone any of the other supplies.  We found a free clinic and to my amazement they gave him his vials of insulin, test strips, and needles free of charge.  I felt so relived.  Well, the next time he had to go we weren't so lucky.  The person "in charge" of the office did not understand what TYPE 1 DIABETES really meant and when I called to make sure they had his insulin in stock, she said that they are not a pharmacy and can't just "give it away".  I explained how we'd already been there and he is a Type 1 and needs this to live.  She did not understand and was unwilling to help.  I begged to talk to the doctor since I knew he'd understand, but she refused to put him on the phone.  Even the health department refused to help.  We were out of options and were forced to move to another state that would be willing to help him.

Out to Eat

We went out to run an errand.  While we were out, we came across a place to eat breakfast and thought it'd be a great idea to grab a bite.  We were about to order when we realized we left the insulin at home.  Being that we weren't so close to home, we had to skip breakfast.  It broke my heart.  Now we never leave home without the insulin & meter, even if it is just a short trip.

Hypoglycemia

We were just lounging around at home one evening and he seemed fine.  After some time, he wasn't acting like himself and seemed out of it.  I immediately grabbed the meter and checked his blood sugar, it was 26!!  I freaked out and gave him as much cookies, juice, and candy as I could. BIG ROOKIE MISTAKE!!  A while later, when we rechecked, he was near 400.  I realize now that we can not over-treat.  Now we follow the Rule of 15.

Cake

We were at a birthday party and he was on MDI (multiple daily injections) at the time.  He wanted a piece of cake, so he checked his blood sugar and took insulin.  At the time, we had no idea about carb counting so it always seemed to just be a "guess and hope for the best" kind of thing.  I do not recommend that by the way.  Also, with MDI its hard to tell how much insulin is on board which makes it even more difficult.  Anyway, hours later he was in the 300's.  I just knew there had to be a better way, but had no idea what.  After doing my own research I realized that there are some good insulin pumps out there that could really help him but we did not have insurance at the time and since getting insulin also was tough enough we knew we would be fighting a losing battle. No one ever thinks a piece of cake has the potential to put you in the hospital.