Life with Type 1

Seeing as November is Diabetes Awareness month I think it would be best to shine some light on what it is to live with Type 1 diabetes as a child. There is a lot of different aspects to Type 1 so it will be better to provide you with a little insight on a daily basis rather than throw it all at you at once. The first little peek into the life with T1 as a child I will give you is what happened yesterday. This is the 2nd time this school year so far this has happened. I got a call around 1:30 that Clifford's blood sugar was running high all day 5 check so far throughout the day and well over 300+. He had a substitute nurse who had not worked with Clifford before and was unfamiliar with what to do in this situation. She said Clifford had just come back down and wasn't feeling good, he said his head hurt and his stomach hurt. Which when you have a high blood sugar like he did, it makes you feel icky, (upset stomach, headache, etc, etc, etc). Over a month ago the exact same thing happened but he was 451, not feeling good so he came home, got some insulin, and felt better within the hour. However the substitute nurse didn't feel 'comfortable' with dosing him when he was not supposed to be. So long story short he came home. He got a small snack, insulin to cover the carbs plus 3 units of a correction dosage because by this time he was 427. An hour and a half later he was 129! And most definitely feeling much better.

The point to the story is that Type 1 never gives you a break, at Cub Scouts we were hit with a low, and at school he was forced to come home and miss out from getting Halloween treats and classwork in the later part of the day. No break, ever....

Halloween and Diabetes

It's that time of year again when the kids go from house to house dressed up in many different costumes and get a ton of Carbs, aka Candy! If you are new to diabetes or just wondering how Halloween and diabetes work, let me do my best to explain it to you. Halloween and diabetes is really not that different from Halloween and NO Diabetes. We get dressed up in our favorite super hero or other costume just like everyone else. We get our treat bags ready for our school parties, sometimes we even have a parade. The only difference is that when it's done and over with, after we check the Carbs, aka candy, we have to make sure that whatever candy is chosen by our T1 to count each and every single carb and dose correctly with insulin. Now in our case and being on MDI's we have to make sure that this candy and insulin dose is at least 2 hours from the last insulin dose. So I guess you can say there are 2 differences, carb counting and strategic planning :). The planning involves making sure we eat at least 2 hours prior to the time of return from Trick or treating. Halloween can be very scary especially to those just starting out, but it's important to remember to let our kids still be kids. Just plan and dose properly with love of course. If you are curious there are a few lists of carb counts in the normal Halloween candy put out each year that you may want as reference for those small pieces that may not have the carbs listed.

Halloween Candy Carb Count #1
Halloween Candy Carb Count #2

You will make it through Halloween and it will be a fun and memorable experience. Stay tuned for a "How to handle Thanksgiving" post and my vent from last years experience.......

The changing moods of D.

Just give insulin to cover the carbs and their numbers will be fine... Um yeah no. That is how it is in a world with unicorns, rainbows, and oh yes glitter. I can give Clifford the same meal every single time, he can have the same blood sugar #, and get the same amount of insulin and guess what his number will most likely never match each other. There are those great things that affect his blood sugar that we cannot control. Stress (rises it) exercise (lowers it), illness ( just plays a wacky roller coaster game for fun). I heard something last year that really just strikes you as WOW there are 99 different things that can affect a blood sugar # and only 3 you can control. So with those numbers it looks like D has the winning odds. It's been a little ridiculous lately with #'s. A treat the other night of a cupcake, (okay fine cover the carbs right) yeah no we dropped low right at bed time. Dosed him with a good amount of carbs, he was high at 20 min check, and guess what woke up normal. Then another snack the night after not nearly as many carbs as the cupcake, bg# was beautiful, and guess what the waking # was, oh yes 303! I really don't understand how the way it works, and frankly I never will. My brain is on overdrive all the time, and when I get down time, I honestly don't know how to function. Since Clifford was diagnosed I've done so much research on every aspect of T1 diabetes, and more. Heck, I'm still researching pretty much daily, and jotting down notes. The truth of the matter is that I will never be done researching, D always changes and nothing will ever be the same with it. It's like having a friend that lives with you 24/7 who has mood swings that are over the top every single day. You would get sick of this friend after a few days would you not? I just wish it was as easy to kick out D as it would be to kick out that friend.

The business of Diabetes

Wow it's been quite awhile since I've actually posted. We are obviously still fighting the fight with D, and doing our best to kick it's butt. Unfortunately we have had some high numbers with the start of school and it's been taking it's toll on Clifford. The bright side is that his numbers are finally starting to get back within range. Look for an increased A1c at his next endo appointment in November, but that is to be expected with school starting. On another bright note I've been so no busy, but productive :), because I got a new writing job working with a diabetes blog in the UK! It is very exciting to me because I can write about the truth about diabetes, and the difference between the types of diabetes. This is another step in awareness and getting the correct word out to others. In case you are curious and want to check it out the blog is located at:Diabetes UK. I will still be keeping everyone updated on Clifford's battle with D and how everything is going, just maybe not as frequent as before!

The sickness created by D

Have you ever sat and wondered what it was like to live with Diabetes? I mean really live with it, the highs and lows. Well from the last few weeks I can most definitely tell you what the highs and lows do to your body. Imagine being on a non stop roller coaster ride, and not one of the fun ones either. You go up, stay up, then dive right back down only to go back up, and back down again. Ever since school started for at least more than half the day Clifford is running high. Now if you remember correctly his last A1c was 6.8%! He is not used to running high, especially not the high's we are seeing from school, 200, 300, 400+. One of which caused him to come home early, another of which caused him to have to sit out gym class. D is taking it's toll on his little body and there is nothing I can do about it right now, except rack my brains on exactly how to get through this. He runs high all day to come home and get back into a normal range then do it all over again the next day. It's making him feel sick to his stomach, giving him a constant headache, his eyes are burning, and he is very emotional. I just don't understand why he cannot catch a break for awhile at least. My wish and prayer for tonight is he get back into a normal, safe range, and be able to enjoy school, and not feel icky all day long. The constant up and down is beating him up, inside and out. It's basically like you or I going days on end without sleep then crashing from exhaustion. His body needs a break to rest up from this ride.

Invisible Illness

What is it like to live with an invisible illness? Diabetes is an invisible illness that makes sure to make it's presence known. From the highs all the way down to the lows. The best way to describe life with an invisible illness is a "roller coaster". The definition of roller coaster is:

An action, event, or experience marked by abrupt, extreme changes in circumstance, quality, or behavior. That in part explains some aspect of Diabetes. But in addition to the "extreme changes" you have the 24/7/365 Fear, Frustration, Anger, Sadness, The feeling of being emotionally and physically drained, and sleep deprivation . Life with an invisible illness such as D, is in one word "Demanding".

Have you ever sat back and heard about another's illness, or home situation and thought, I could never do that, I could never be that strong. Well when something such as D enters into your life, into your child's life, you have no other choice then to be strong, throwing in the towel is NOT an option. I know by this point all of this can sound scary, and the blunt truth is that it is. Diabetes is very scary, life with diabetes is scary. Because even though things may seem fine on the outside, and things are cooperating on the inside, it can change in the blink of an eye. The fear of death is far too great with Diabetes, and far too real with the loss of a precious 15 year old girl in her sleep just two days ago. What one that lives with, and one that cares for someone with an invisible illness has to decide is that fear worth being miserable for the rest of your life? To me even though the fear will always be there, it was not worth it. I may be in fear daily that something will go wrong, but I don't let that fear control me. The one thing D has brought into the picture was to learn to cherish life NOW! Cherish every moment you have and be thankful for those small miracles. I know I am thankful every morning when I hear Clifford waking up in bed! I fear the night time, I stress and worry over the night time, but there is a fine line when I tell myself enough is enough. I cannot let the fear and stress control me because I would be miserable, we would all be miserable.

Clifford is well aware what happens if he drops to low from past experience with unconsciousness and seizures. But I've tried to instill in him that D is not going to control him. We are going to do our best to control D, and keep it at bay. He is only 7 years old, he should be worrying about school, tests, sports, and dare I say girls! He should not be worrying about waking up in his bed the next morning! I make sure to put him to bed at night, give him kisses and hugs, and let him know I'll be keeping an eye on him overnight and not to worry. The sense of security it brings to him is heart warming. I couldn't protect my son from D damaging and taking over his body, but I will do my best to protect him now from it so he can live the normal healthy life.

In ending there is another word associated with Diabetes, and that is HOPE!

School.....

I have to admit the school situation with Diabetes has been giving me a headache recently. We have a temp 504 in place, temp being the school has it on file but I have yet to sign it because I do not agree with one part. The part where we're trying to get an aid for Clifford, still working on that will update as further information comes in ..

But I have to say our new school nurse is great and on the ball. I got called twice today. Once because the carb count for school lunch items was all funky and the total we thought wasn't the correct one. So she wanted to let me know the correct one. Awesome part #1. The second time being she was concerned because both of the Type 1 diabetic kids in school (Clifford and a little girl) were dropping low before lunch because of recess. So she wanted to discuss if we should try to get recess moved. Hmm this is great because if recess could be after lunch it will help with those highs we're sing at snack... So I told her just that, and she is talking to the principal about getting it moved. That is awesome part #2. I do not have to talk, and try to leave messages, get no response then keep trying over and over. She's going to advocate for this for the kids. I love it! Second week into school and I'm very pleased with our nurse, that gives me a sense of relief on that end. Up next our 504!!!!