Category: Uncategorized

Really now…what other chronic illness can say that?

Type 1 diabetes can make you have low blood sugar when you are not feeling well. If my son is about to get a stomach bug, once the bug finally hits, I can usually look back at his glucose numbers and see a bunch of lows before he actually came down with the illness.

Type 1 diabetes can make you have high blood sugar when you are not feeling well. If my son is about to get a fever and sore throat bug, once the bug finally hits, I can usually look back at his glucose numbers and see a bunch of highs before he actually came down with the illness.

Type 1 diabetes can make you have low blood sugar when you are active in sports. When my son swims all summer at the pool and beach his sugar will drop. Drop. We have to give lots of carb snacks throughout the day to keep him nice and even so he can swim the day away.

Type 1 diabetes can make you have high blood sugar when you are active in sports. When my son used to play soccer, for that very brief moment in time, his sugar used to run really high, like in the 400s, for a few hours after he actually played. Corrections would drop him like a brick because it was all adrenaline.

Stress can drop my son’s sugars really low. If he is worried about spending time away from me for too long we have to cut his basal a bit so his sugar doesn’t drop too low.

Stress can push my son’s sugars really high. If he is worried about taking a standardized test in school his sugar will skyrocket. 400s are not uncommon when a test is on the horizon. We have to tread lightly with these types of highs because as soon as the test is done, the number seems to drop.

Type 1 diabetes makes my son’s sugar drop when the weather is too warm. We have to lower basals a bit when we are about to hit a big warm spell, and make sure we have lots of glucose drinks for the longs summer days.

Type 1 diabetes makes my son’s sugar rise when the weather is cold. We have to raise the basals and give corrections throughout the day to keep his sugar in range. Unless of course he is playing in the snow. See swimming above.

Type 1 diabetes makes my son’s sugar rise when the school year starts. I have many sleepless nights whenever we go back to school because many adjustments have to be made to pump settings to keep his sugar as close to range as possible.

Type 1 diabetes makes my son’s sugar drop when we are on school breaks. I have many sleepless nights whenever we go on break because many adjustments have to be made to pump settings to keep his sugar as close to range as possible.

Yeah. See where I’m going with this? Diabetes…the great overachiever.

It does it all. No illness, sport, stressful event, standardized test, season, school year, or school break can be free of Type 1 diabetes. It is always there, showing off. Puffing out it’s chest making sure we know he is the ultimate eager beaver.

I was never a fan of the overachiever, so diabetes isn’t impressing anyone.

 

…when a person dies of Type 1 diabetes. Understandably, to the family and friend of the person who died that question may not matter. All they know is their father, mother, daughter, son, friend or other family member has died and they are left to pick up the pieces. But to an outsider, an outsider with a young son living with Type 1 diabetes, that question is of the utmost importance. It is important so that I can know what to do or not do to keep my son alive. I do everything I can to keep him alive.

I check his sugar 10 times a day including while he sleeps.

I review his numbers on a daily basis to make sure the settings in his pump are right.

I maintain all his supplies to make sure he always has enough.

I check his equipment (pump, meter) to make sure they work and have full batteries.

I weigh his food to keep his number as close to range as possible.

I treat every low with respect and treat immediately.

But what if that’s not enough?

And I’m sure the people that die from Type 1 diabetes thought they were doing enough. I’m sure their families trusted that when they were going to bed at night, that all was well, and they would indeed wake up the next day. Instead they die.

See, death from Type 1 diabetes is not a one shot deal. You don’t die from Type 1 diabetes. You die from a low blood sugar. Or lots of high blood sugars. Or DKA. You die from pumps not working. Or settings being completely off. You die from too much insulin being given. Or not enough insulin.

As a mom of a son with Type 1 the ‘hows’ and ‘whys’ are important. If the person died from a pump failure, dead pump, then I know to be more vigilant in checking my son’s pump. If the person died from a low in their sleep than that just makes me all the more positive that checking in the middle of the night is the right thing to do. If a person died from high blood sugar from not checking his sugar, then I need to remember that when my heart aches because I am poking my son’s finger again that it IS the right the to do. It might just be so right that it’s the thing that keeps him alive and with me one more day.

I think of my son dying every single day. In fact, it’s the very first thought that pops into my head when I wake up in the morning. Except of course, the mornings where he crawled into bed with me and I can feel him breathing. Those are good mornings. But if he’s not in my bed, my first thought is…well, you get what my first thought is. Even though I think it, I can’t seem to write it.

So, it is with no disrespect that I inquire of the ‘hows’ and ‘whys’ of the death of someone with Type 1. No disrespect at all. It is just the curiosity of a mom who works everyday to keep her son alive for just one more day.

 

1. I wish you knew that there really is no controlling blood glucose. Blood glucose is affected by weather, emotions including but not limited to fear, excitement, and worry, illness, growing, hormones, sleep, activity or lackethereof, severe change of schedule, and absorption of insulin. I’m sure there are more but those are the biggies for us. Until I am able to miraculously control each and every one of those variables then I might be able to control my son’s blood glucose numbers. For now I have to be happy with managing those numbers to the best of my ability among  the plethora of variables that seemingly conspire against me day in and day out.

2. I wish you knew that things can turn on a dime when dealing with Type 1 diabetes. We can be trucking along with blood glucose numbers in the low 100s (good range) and then Wham! Blammo! out of know where a site pops out somewhere between the last BG check at 1:00pm and the next one at 4:00pm and we can have a blood glucose reading of 495 with 1.1 blood ketones. We go from enjoying our day to emergency triage. Got to get that glucose number DOWN. NOW. Got to get rid of those ketones. NOW. We go from enjoying our day to checking blood glucose and ketones every 15 minutes. Pushing water and insulin like they are one in the same. Ketones are dangerous and deadly and come hell or high water you have to get rid of them. Turn on a dime, life or death, a day in the life…

3. I wish you knew that dealing with Type 1 diabetes is both proactive and reactive. Yes, I am proactive that all my son’s pump settings are in a good place right now, all his other ratios seem to be working and helping to keep his number  in range. We eat right. We rest. We exercise. We live our lives to the fullest. Then there is the reactive. I have to decide on a moments notice what to do with a blood glucose reading of 46, or 446. I have to know exactly what to do when his POD starts whistling and giving an error message that there is NO delivery of insulin. I have to react as quickly as if my son’s life depended on it. Oh wait, it does.

4. I wish you knew that when my son is not under my care, the variables are multiplied as to what can negatively affect his blood glucose. An adult or teacher that doesn’t quite “get” his diabetes will cause my son stress and will make it harder for me to pinpoint how to keep his number in range. A cafeteria menu that keeps changing without notice makes me tell my son the wrong carb count for lunch which will either cause his glucose to go sky high or drop like a brick. A cafeteria worker who won’t tell us the alternate lunch until she looks in the freezer each morning which leaves my son scrambling moments before lunch to find out what his carb count is before he sits down to eat so he can at least finish his meal in the 20 minutes the school gives them to eat.

5. I wish you knew that I live in the moment because I absolutely have to. We have high blood glucose reading and low blood glucose readings every single day. See above. A number is just that to me, a number. I have to see it, evaluate it, and move on. We check my son’s sugar over 10 times a day. Could you imagine if I got stuck on every too high or too low blood glucose reading. I’d be stuck somewhere in August of 2007. So when you ask me, “How is your son? His number was high yesterday.” I am not looking at you in a deer in headlights because you are wrong for asking, but because I honestly do not remember or even know about which number you could be talking about. If I chose to dwell on every number of every day I’d be in big trouble. It’s nice to be asked, but in most cases I won’t have an answer other than, “He is fine.” Until there is a cure, “He is fine,” is the way it has to be or we have no where else to go.