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There really is no in between. No, I’m not talking about diabetes per se, yes, you either get it as in get diagnosed or you don’t get it and you are not diagnosed, but I mean people either get this disease or they don’t. Most people, even the ones we need to get it, caregivers of our children, endocrinologists, pediatricians, usually don’t get it. They may be knowledgeable about the facts: how to treat highs, how to treat lows, insulin for carbs, but knowledge is a far cry from feeling. I can know a lot of things about a lot of things, but I don’t truly know until I am in them, and they are in me.

Type 1 diabetes is blood glucose, yes. Type 1 diabetes is insulin, yes. Type 1 diabetes is carb counting, yes.

But…

Type 1 diabetes is also pain, yes. Type 1 diabetes is also fear, yes. Type 1 diabetes is also unrelenting, yes. Type 1 diabetes is also exhausting, yes. Yes. Yes. Yes.

As a mom of a son with Type 1 diabetes, I truly get it. I feel the pain that my son feels when he has to check his sugar over 10 times a day. I feel his little fingers as they get calloused and rough at the tender age of 7 because he has to check his sugar to stay alive. I feel my son’s pain when he winces instead of screams because he is so freaking brave when we have to change his insulin pump every 3 days. The pain is there, it does not go away. It can’t, pain and diabetes go hand in hand.

I feel the fear. I feel the fear that my son will not be alive when I check on him in the morning. That’s a fear that cannot be explained or understood unless you live it every day. No mother should wonder if her son will be alive in the morning. I feel the fear when my son is outside playing and I see him hanging upside from the slide as if he has passed out, only to scream, “WHAT ARE YOU DOING!?!?” Just to have said son answer quite simply…”Nothing”. He knows the fear too. He knows he cannot leave the house with fast acting sugar and his meter. He knows it is dangerous for him to be far from another person. He is 7!

I feel the fear of a blood glucose reading of 45. It’s as if a chainsaw murderer is chasing me to my front door and I only have seconds to get the key in the lock so I can be safe inside. When I see a 45 I feel as if I only have seconds to grab that fast acting sugar to ward off a low blood sugar seizure. Who am I to test the fate of a reading of 45?

I feel the unrelenting power of diabetes. There are no sick days, time off, vacation days, holidays, mental health days when dealing with Type 1 diabetes. You are on and working 24 hours a day 7 days week. There is a joke that you can rest when you are dead, well, that’s about right for caring for diabetes. You can stop caring for diabetes when you are dead. Or if you turn it, you can stop caring for your diabetes and you will be dead. Either way, you’re off the hook, but until then, you keep on keeping on. My son is well aware too, birthday parties, water parks, the beach, the pool, Great Adventure, diabetes is there. Uninvited. Unwelcome. Yet, always there.

Exhausting. No, not the “I worked all day on my feet” exhausted. But more like the “I haven’t slept more than 2 hours in row for 3 days because I have to check my son’s sugar every 2 hours” exhausted. That’s an exhausted that many people will never have to know. Exhausting to my son, who is the recipient of all those blood checks. Who would want someone to come into their safe space, their bedroom, and stick a needle in their finger to draw out a tiny droplet of blood? Not I. My son wakes up sometimes more tired than when he went to bed and he has no idea why. He doesn’t wake up with those checks, but I know he knows I’m there. He sticks his tiny finger out when he hears the glucose meter beep. If that doesn’t break your heart…

I get it, I do, and I love the people that get it with me…you know who you are.

Not really the hardest part, but it’s always nice to start writing/reading with a tune in your head. Waiting. Waiting takes on a whole new meaning when it is your child’s health on the table.

My son is starting a new pump this Sunday when the trainer stops by to get us going. The ball for the new pump started rolling on Christmas Eve when my son told me that his Christmas wish was, “…that when Santa came by to drop off presents he would also take away my diabetes.”  He continued, “Well, not really the diabetes but I wish he could take away the tubing and site changes from my pump.” Yes, that shattering sound that you hear is my heart breaking yet again as I type those awful words.

So after I picked the pieces of my heart off the floor, I decided to research a new pump for him, one without tubing.

Two days after Christmas I got on the horn (always wanted to say that). I called the new pump company and had them send a dummy pump for us to try on. Got that in the mail in about a week. Wore it. Loved it. We were READY!

Around the same time I contacted our endo’s office requesting that paperwork be filled out to start the process of switching pumps. Got that in the mail about 3 weeks (about 23 days) later. Yep. You read correctly.  It took 23 days for medical necessity letters to go 22 driving miles.

There is no blame being placed here. I understand that snail mail from the hospital takes a long time to actually get mailed, but that doesn’t make the waiting any easier. Especially when you have your child waiting right along with you. You think Christmas morning is exciting, well so is getting the paperwork for a new life saving device. Your priorities shift a bit when you’re a kid living with diabetes.

If I had known that it was going to take that long I would have driven myself to get it. Live and learn.

You think we’d be set now that our pump training is Sunday. No, we continue to wait. We are now waiting for our endo’s office to submit the CORRECT prescriptions needed to transition to this new pump. We need new meters and test strips that coordinate with the new pump. The reason I wrote correct is because they did submit some, but they were not right, so now along with WAITING on hold with insurance as I have done several times because of the wrong prescriptions being sent, I am still WAITING for the right ones to be submitted.

3 unanswered phone messages, 3 unanswered and seemingly unread emails and 5 hours on the phone with insurance and I am still WAITING. Just to keep this straight in your head, I am waiting for a response from the endo as to the progress of the new prescriptions and I am waiting for the correct order to be  placed and I am waiting to receive the order of supplies THAT HELP KEEP MY SON ALIVE. Again…THAT HELP KEEP MY SON ALIVE!!!!

Yeah, the waiting is, if not the hardest part…a pretty damn hard part at that.

Oh and add to this waiting for that CURE and I would say waiting is a pretty damn hard part indeed.

Yes. No. Maybe. Well, let me see. Yes, that one little question gets that many answers at once. That question, Is that a good number? is so irrelevant if there is no other information given.

80 is a great number upon waking up. 80 is not so great 1 hour after eating with over 3 units of insulin on board. 80 is not so great for a little one sound asleep at night with a plus/minus standard deviation allowed on meters and on basal rates. Our basal rate deviation that is acceptable to our endo is plus/minus 30 points. A basal rate is set right if my son does not go over 30 points from our starting number or below 30 from our starting numbers. So an 80 in the middle of the night could possibly go to 50 and still be in good basal range but in dangerous blood glucose range. That same 80 in the middle of the night could possibly got to 110 and still be in good basal range and an even healthy blood glucose range. That’s where the maybe comes in. And that’s where the tired mama comes in too.

I get stuck in the middle of the night if I see a number like 80. Do I treat it as a low? Or go back to bed and hope for the best? I never hope for the best, the real plan of action is I will continue to test my son every 1/2 hour while he sleeps to see where that number is going. But if I did decide to treat that 80 with some carbs, and if it were going up to 110 on it’s own, then my adding extra carbs could land us in the 190 range, which is a not a good number for waking up.

Now let’s talk about that 190. Diabetes experts, the ones that get paid, unlike the mom experts that I confer with on a daily basis, say that a good number for 2 hours after eating is 50 points higher than where you started. So if my son started his meal at 140 and I check him at the 2 hour point and I got a 190 then I would be thrilled. 190 2 hours after eating with about 1.5 hours of insulin left to work should give us a nice smooth landing into our decent blood glucose range by the next check.

Ah, 190 at night. Another one that gets a maybe. 190 is a bit high UNLESS my son was very active during the day and I know he is going to have a delayed drop from the previous day. Sometimes it takes 12 hours for a low to hit after an extremely active day. And yet again, another night where I check a couple more times every 1/2 hour to determine what is going on. Sticking at 190 overnight requires a correction (insulin), but dropping means it is okay for me to head back to bed. Unless of course it’s a big drop like 190 to 100 in 1/2 hour. A drop like that is NEVER good.

300, 400, 500, HI, 50, 40, 30, 20, and LO are NEVER good numbers. It’s those numbers in between from say 80 to 190, all 110 of them that leave me wondering if it indeed is a good number.

I wish there was something more concrete to this disease that weighs like a ton of bricks on my heart.