Lost

Most days, C makes good decisions with his diabetes management.  I trust him when I’m not around to make the right choices and know what to do.  Every once in a while, that is not the case and it’s hard not to let that frustration destroy my day.

Take today for example.  C woke at 122.  I corrected it and he only wanted bacon and eggs for breakfast.  No carbs.  He took a stupid sugar-free vitamin sample which was 3 carbs (sugar alcohol) and I did not bolus for it.  I had no reason to think that there would be a problem with his blood sugar.

I left work early so I’d have time to take my dog for a run/bike ride before picking them up.  While I was out, I got a call from C, “Mom my blood sugar’s 538.”  I asked him to retest and he said that he already wiped his hands with alcohol and retested… It didn’t occur to me to ask him what the other number was.  My bad.  I told him to correct and I’d be there in 5 minutes.

As soon as I picked him up I had him retest with the Ping meter. 206.  In a panic, I grab his other meter to scroll through and see that his first number was 296, after that he washed his hands and came up with the 538.  I asked him why he wouldn’t have retested at that point realizing that these numbers were way to far apart.  His answer was that he wasn’t feeling very good so he figured the 538 was right.  Fuck.  All I can think of is that he gave way too much insulin for his actual number and I’m panicking.

I get home and I’m trying my hardest to relax and not get in a bad mood about this mistake.  I asked how much insulin it wanted to give him when he corrected.  2 units.  Huh?  I was thinking it must’ve been like 4.  So, I check… sure enough it should’ve suggested 4.35 units.  Now I’m fucking pissed.  I asked him if there had been IOB or what the heck was going on and he’s lost.  “I hate having diabetes.  It’s too confusing.” was his answer.

This is the first time he has ever said that he hated diabetes.

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homework? what’s that?

Every time I feel like I have things under control, I realize I’m failing. The last week has been great. C’s numbers have been good, he hasn’t felt sick, I’ve been cooking good dinners, been trying to keep up with exercising the dogs, I wake up to check his blood 2-3 times per night, more when his numbers are funny.
I go to work in the morning and I’ve been staying all day. I’ve been exhausted. I come home and I need to take a nap most days. Or at least do nothing and let my brain shut off for a while.
School’s doing state testing this week and next. I’ve been busting my ass to make sure from like 3:00pm on we’re as absolutely careful as possible about what and when C eats so he can keep in-range numbers, get to sleep at a decent hour, get up ready to eat breakfast and get to school on time. We’ve done it both days so far. By the way, I’m trying to be a mom to my other son at the same time as all of this.
Sooo, I pick C up from school today and he tells me that his teacher was really mad today and is going to email me. Apparently C didn’t do his book report that was due today. I wish he did. I wish I’d helped him. To be honest, it had barely crossed my mind. It was on the very bottom of my priority pile. So here I am, feeling like I’m letting him slip school and its importance and frankly, I don’t care. How can I right now? I’m not sure the teacher understands that I’m at the end of my rope here. Some days I’m not sure how I’m going to make it to the next day. I wonder how I’ll keep C healthy. I wonder how I’ll make sure E gets enough of my time. I’ll wonder how I’m supposed to keep my job. I wonder how I’ll make the mortgage this month. I’ll wonder if C will be ok if I accidentally sleep through my 3am alarm and don’t test him. I don’t sleep just in case I won’t wake up from the alarm. And with all of this bullshit, I’m supposed to remember that he needs to get his book report done. I don’t know how other parents are doing it. I have no idea how I’ve made it and stayed fairly sane this long. I have no idea how I’m supposed to keep it up.
I’m not looking forward to getting this email today. I’m feeling like I’m too sleep-deprived to answer it properly.

lessons taught… by sleepless me

I’m averaging 3-4 phone calls from C a day from school telling me every reason under the sun why he’s not feeling well and needs to come home. I work, mind you.  And my work gave me more hours back two weeks ago. So far I have not been able to work these extra hours due to my children’s Dr.’s appts, sicknesses, Spring Break and crazy phone calls from the Health Office at school.  It’s getting old.  These are the times I wish we were a two-parent household so that somebody else could deal with at least half of the shenanigans.
This morning I heard, “Mom, I don’t feel good.”
My response… “Me either.  Just like you, I feel like crap every single morning. But every morning I get up, get dressed, go to work and get on with my day even though I don’t want to.  You feel like this every day, you don’t have to tell me anymore. You don’t even have to call me from school anymore to tell me.  When I’m at work, I know that you likely are feeling like crap at school.  If you absolutely need me, call.  Otherwise, I’m out of ideas for you.”
And Mom of the Year goes to….

memories…

Every once in a while I get reminded that C REALLY DOES have diabetes and celiac FOREVER. It makes me sick to my stomach when it happens.

Today I got registration papers in the mail from the summer camp he goes to every year.  He’s not going this year.  I don’t have enough hours at work to justify them going, but also, I’m not sure how I feel about him going on field trips with 19-25 year olds who have no experience with diabetes.  Anyway, when I got the papers I realized that I don’t think they even know that he was diagnosed.  The first time I notoiced his symptoms we were at Hurricane Harbor with them.  It was the last field trip he did with them.  I had to pull them out of day camp early due to my hours being cut at work, but I went on the last one with them.  It was a million degrees out, we were only drinking from the drinking fountains when we passed them and C had to head for the bathrooms about every 30 minutes.  He even decided to sit out at the tables for a while and all his friends were on the water slides.  I verbalized to my friend, “I hope the kid doesn’t have diabetes.”
Oh, if only I had known how dead on I was.  I wish I had known just a little more about diabetes.  I had no idea it was so serious.  I had no idea that he really could have it.  Oh that sarcastic remark will stay stuck in my head forever.  It was actually 8 more days before I rushed him to the ER and was told I was right.
Anyway, I wrote back to the camp.  I told them about his diagnoses (is that how you spell it when there’s more than one??). While writing I almost started crying.  We live with these day in and day out.  There’s not a lot of thinking about them, just living and managing.  It’s just a new life and we’ve adjusted pretty darn well.  However, writing it felt like reliving it.  It was like hearing the doctors tell me “yes” again when I asked if he’d be insulin dependant.  It was just a reminder that “yes,” he will have these forever.

overwhelming frustration

I’m so tired.  I’m tired because I can’t sleep.  Since I don’t sleep, I’m too tired to get hungry and I forget meals.  Then I get a cold.  Ugh.  Sometimes I get so stressed about C and making he’s healthy and eating the right amount of good food minus the gluten that I realize I haven’t been noticing homework and then I have something new to stress about.  It’s so hard to fall asleep and then there’s the damn alarm at 2 am.  Once I’m up checking his blood glucose, I’m up.  There’s no falling back asleep.  There’s been a few times in the past week I’ve watched the clock change to 5:00.  Most nights it’s somewhere in the 4:00/:30 range.  I’ll have a million things running through my head.  You know, all the things I normally thought about in the daytime when I could do something about it.  Now I just spend my days running back and forth meeting C for insulin, picking them up from school, trying to work in between, meeting with the teachers… it’s never ending.  I come home and feel so overwhelmed that I don’t do squat.  I look at the laundry that needs to be put away and I don’t care.  I see medical bills that I need to call about and find out why they’re not billing insurance and I don’t even know where to start.  I look at the pile of papers on my desk that are just waiting to get filed and look away.  I just feel exhausted.  If I try to take a nap I feel guilty for not doing the things I should.  I’m truly frustrated right now.  I have way too much on my plate and I don’t know how to juggle it all.  My mom’s here and thank goodness because the boys wouldn’t have lunches at school if she weren’t up early making them and we definitely wouldn’t have any clean dishes.  We wouldn’t have any food in the cupboards if she wasn’t going grocery shopping.  I just wish I could hand over C’s care.  Even for a short time.  A few hours and not feel on edge.  When he’s not with me, I feel like he’s in danger.  My mom can take care of him and I trust her, but I can’t be sure that she or he will remember to test his blood before bed.  He’s got an alarm on his phone as to when to take his Lantus, but what if he doesn’t hear his phone?  Will anyone remember?  It’s so frustrating.  Our school health tech is really nice, but I don’t see her being the slightest bit involved in his insulin-giving at lunch.  I’ve told her on many occassions that my plan is to NOT come every day forever, but I don’t know if she even knows what to do.  He’s at an age where he does everything himself, but he NEEDS supervision because he IS a kid and he IS new to this.  He needs someone else to count his carbs because sometimes he missing some on his list.  He needs someone to double check the number on his insulin pen to be sure that it’s the right amount.  It’s so crazy important that even though I know how great he is, I can’t trust any 10 year old (even him) to always do everything right.
Anyway, there’s my rant.  Now if I were only screaming all of this loudly I might feel a little better  🙂

a week later

home a week and things are going pretty well. I’m feeling a lot less emotional and moving on. Life’s close to normal. The scheduling with meals at the same time every day might be the hardest part for me right now. I’m still so darn tired and I have to stay up until 9:00 to give insulin, wake up at 2:00am to test his blood and then be up and ready to give insulin and breakfast at 7:00am. During the day I have no time to nap because it goes like this:
insulin/breakfast, go to work, give snack, leave work, give insulin/lunch, give snack, give insulin/dinner, give snack, give insulin, go to bed, wake up, start over…
Hopefully by next week I’ll be feeling even better all over again. I think so.
We’ve been trying to continue on with our normal activities and yesterday went to Vertical Heaven for the boys to do some rock climbing. They had so much fun and were both BEAT by the time we left. Tomorrow is the X Games. It’s been something I’ve been scared of since I found out about the diabetes. It will be the first time we leave the comfort of our city and truly try to do whatever we were going to do with this added issue. I’m feeling like his glucose levels are closer to a steady pattern than last week, so hopefully all will be well. I’ve got my fingers crossed. Then, Saturday and Sunday we have birthday parties to go to. I may bring our own food just so I know how many carbs and that there will definitely be something for a picky diabetic…

p.s. i just contradicted myself. I emailed someone who’d written to me and broke down as upset and scared as I was last week. God, I hope it’s true that you really do adjust and get the hang of all of this stuff quickly.

day 2 home…

Two days home and it’s getting more and more stressful! AGH! I had to call the hospital today to get advise from (calmed down by) a nurse. We went to the movie theater today though and all went well. I’m trying to make sure I leave the house. I could be a hermit and be perfectly happy especially if the idea of having a glucose emergency were hanging over my head. So, I’m forcing myself to have quick trips out of the house. Also, C was just getting his freedom to roam the neighborhood with his friend recently and now I’ve had to take that away until I know we have this under control. Poor guy.
This evening I even let my mom take him to the grocery store! That was nerve wracking, too, but that’s when I took advantage and called the nurse in hysterics… All will work out. I know it will. And still, C’s handling everything like a champ. Man, I love that kid.