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.
As I read your blog it made me cry for the parents who have children with diabetes! I am a type 1 for 41 years! I was dx before the first diet drink, the first glucometer, the first insulin pump or CGM. But as they struggle I want them to know that there is and can be a somewhat normal life for the children and loved ones! I look back at when I was dx and where I am today! I am a proud mother of a 25 year old son who they wanted me to aboard because I was diabetic, then he was born 8 weeks early and it was touch and go day to day in the NICU! They sent him home and told me “do the best you can with him, but don’t expect much” Are they kidding, I brought him home, loved him and treated him like every other child he is now an Engineer, engaged and to be married in 2013! I must admit I have been bargaining my entire life! God, just let me live long enough to see him go to school, just let me live long enough that he will remember me When I’m gone, just let me see him graduate from high school, now I find myself once again bargaining my way thru life! God, just let me see him married and next will come my bargianing for grand kids! I can’t complain about my life, I am a nurse and have seen so much worse, yet it doesn’t make my bad days of fluctuating blood sugars from 30 to over 600 feel any better! It doesn’t help the complications that I live with that are hidden inside of me, each time a doctor tells me ” you look fantastic for having this disease that long! They don’t get it either, it is killing you from the inside out! I look great and ppl think I am 10 yrs younger than I am, but they have not seen inside of me or the complications I have, the pain from neuropathy that I hide so well, the small vision loss I have, the extreme fatigue, because I do not let it show, we hide that part of our disease! It doesn’t help the ppl in my life understand that ” this is my life” I’ve
been chasing the highs and the lows for over 40 and there are times when I’m just tired of it! I have that right to be tired of it and so do others with diabetes! It tires you out, wears you down and at times breaks your spirit! Those are the times that make you appreciate the good days……..
Thank you. I will be sharing this over and over. It takes a T1 mom to understand a T1 mom.
Wow! You have put into words what im feeling EVERYDAY! I also am sharing your “WORDS” with others….i always excuse them for “not getting it” because in all honesty..i dont either sometimes!But as people were taking my talking and explaining as me whining or feeling sorry for myself this really helps. Its easy for people to see it as that but that is our life 24/7 and no nights or weekends off!our son was DX April 8th 2011 at 3yrs old. And what a year it has been. There are so many emotions that go with diabetes and yes they tend to go from one extreme to the other all according to numbers. And people DO NOT understand…ive had my son called a whiny lil brat and that im an over protective parent…well yup and yup! But what they didn’t know is his BG was over 400 and then crashed from correction and due to his amount of activity i couldn’t hold his number’s unless your a D-mama you would have no understanding so forgiveness is also a HUGE part of diabetes! Now that i have read alot of your blogs and the responces i know we are not alone…and as someone already said it’s sad that there are others dealing with it also. Thank you so much!
Your blog is soo true.. I understand as a 14 year old type 1. I can relate to your blog in every way 🙂
Well put! I have two children and a husband with T1. We are usually fine too, but you never know when some number may make or break your day.
Great blog! It really does feel great knowing we are not alone. My 9yr old daughter just made 2 yrs as type 1 in Nov. The first 2 years we had a really good grip on things. In the end of Sept.
2011 she was hospitalized for DKA & then in the early part of Dec again for borderline DKA all because she caught a common viral sickness, in which we went from Sept to Dec literally checking sugars & giving insulin every 2 hours because we couldn’t keep her sugars in the normal range. After her Dec hospital stay we finally have a grip on things again. We still get a random high every now & then where I catch myself blaming my daughter for eating something she shouldn’t have & them realize maybe she didn’t. I question myself all the time wondering how much longer before we end up in the hospital again. My daughter just seems so sickly lately & has yet gotten back to her normal weight. Drs say if she is going through puberty its will be rough for some time. It’s really sad that we have to watch our children go through this & I too can only answer “she’s fine” when one ask “how is your daughter?” It’s really the only thing you can say!!
Thank you so much for reading. Agreed, nothing about this disease is easy. Yes, sure, we make it work, because we have no other choice. It’s do or die, literally.
Hugs to you and your daughter.
Leslie
Thank you so much for reading. This disease is amazing because there are so many behind the scenes that people have no idea about. Hugs to you and your son. Thank you for sharing too. The more we share this blog the more people we can reach.
Leslie
spot on & well written 🙂 One of the best things someone ever reminded me re handling my daughter’s diabetes
Was, ” just because you appear to do something with ease, does not mean it is easy.” 7+ years into managing diabetes
With my now 11 year old a lot of it is second nature, a lot habit (the process of changing a site, making sure we have
Everything we need every time we leave the house) – even second nature & habit is WORK. Nothing about diabetes
Is easy, predictable or makes sense.
Thank you for posting this. It hit me straight in the heart. My son is 9 and dx’d at age 2. He is on MDI. We tried the pump but had to stop because he has the MRSA staph in his body and he broke out at every site. He was in the hospital for 6 days. He still breaks out with this often. We struggle everyday to manage this disease and your words are what I feel. Thank you for sharing and I will sharing your post with everyone I know.
Wow…glad to hear we are not alone out there but a really crappy thing to have in common. My answer when anyone asks how is Sophia’s diabetes? truly all you can answer is She is fine unless you truly live this day in and day out. Thanks for the post….
Thank you for reading. Wow, you have been at this a long time. I do wish you continued success living with this awful disease. Leslie
You sort of took my breath away- you’ve put into words the things I feel and think every day. Thank you. (mom of almost 10 year old boy, diagnosed at 11 months)
Thank you for putting our feelings into words. We all identify so much with this because it is our life day n and day out.
Thank you Kasey and Jana. Welcome to my blog. I do understand the feeling of bittersweet. Feeling alone is the worst but if you have company it means another caregiver feels the same thing. Thanks for sharing.
Leslie
Thank you for this… I’ve shared it. You put into words exactly what we feel.
I am crying as I read this because this is exactly how it is for us day in and day out. It’s bittersweet to me that you know too…comforting on the one hand that someone else knows and is living it. We are not alone…sad on the other hand that others are dealing with this too. Thank you for posting this. I am sending it out to everyone I know. Hopefully this helps others who do not have T1 understand how our lives operate from day to day.
Thank you so much for reading and your kind words. I look forward to becoming a regular at your site as well!!
Leslie
Just giving a shout out that I linked this post back to my http://www.naturallysweetsisters.com facebook page. Well written and well said. Thank you for honestly writing in spite of what the rest of the world thinks. xxoo
Amy
Thank you so much for reading. I do say them over and over and I hope by putting them into type we can send them to our friends and families so we can save some time. Some day everyone will ‘get it’.
Thanks again!
Leslie
Thank you. I cannot tell you how many times I have said these exact same things. My son was dx’d at age 18 months, he is now 8. My eldest daughter was dx’d at 7 years and is now 10. Our youngest daughter, as you say in an earlier post, doesn’t have T1 yet. But she does have the genetic markers and she does have a GTTOT every 6 months. /sigh
Maybe if we all say these things often enough, people will finally hear us.
Thank you so much for reading and for passing along!! I wish you the best!
Leslie
I love your blog. I got a little emotional, you wrote exactly how I feel and what we all go through every day. (15 yr. old with 5 years of type 1). Thanks so much! I will pass this along. 🙂