…What interesting, unexpected thing do you do now that six months ago you never dreamed you’d ever do?
And by calculating insulin, I mean I had to take a 22 day period, subtract the three highest amounts, add the rest together, and divide by 19. Then took another 22 day period, subtracted the three lowest, added the rest together, divided by 19, and compared the two numbers.
What for? Well, Buddy’s insulin was running way too low by the end of each month, but to increase his prescription, we had to tell the nurse practitioner just how much insulin he was using/needing each day. We’d been severely limiting his insulin for those first 22 days so we took those days as the low number. And the 22 days prior to that as the number we were aiming for (when we weren’t limiting his insulin usage). Those three days we subtracted were highs (or lows) that really messed with the overall average, so we eliminated them to get a more accurate number.
There might be better, more accurate ways to do this, but this worked for us and it gave the hospital the numbers they needed to work with. Because the difference was 5 units of insulin per day–and for a growing boy whose appetite has quadrupled since his diagnosis, this was a huge jump.
So, yeah, a year ago, I never in a million years dreamed that…
…one day I’d be running insulin numbers back and forth with the hospital
…be on a first name basis with the nurse practitioner (we see/talk to her more often than the dr so she’s our go-to person, plus, she’s really nice to work with)
…be able to walk into the pharmacy and have the guys behind the counter ask me if this is for Buddy without me having to remind them who he is or what his name is
…be the one who deals with 99% of his shots
…be able to dictate Buddy’s meal plan to one of the kids and tell them food and carb amounts without having to check the labels
…have the hospital’s endocrinology department in my favorites list on my phone
And yet, here we are, doing all those things I never dreamed I’d be doing. And surviving. That part surprises me sometimes because I’m the person who couldn’t dig a splinter out of someone’s finger without getting lightheaded, and yet I’m the one who wields the needles most of the time without it bothering me at all.
We are surviving just fine, but life does get turned on end sometimes. Plans get interrupted or changed without a moment’s notice.
Like this week… I have a package I need to get in the mail. We’d just gotten Buddy’s prescription notification (they did increase his prescription so no more scraping to get by!) so we made plans to run into town to pick it up, stopping by the post office on the way. Two birds with the one stone.
However, before we could get going, we had a series of really bad thunderstorms pass through the area. We waited for the rain to clear up enough we weren’t going out in a torrential downpour, then headed for town. It was getting later in the evening and we didn’t want to run into any issues getting the prescription, so we went there first. By the time we made it back to the post office…
It was closed.
Our little country post office doesn’t have a parcel drop off, so to mail a package you have to be there during working hours. So that will have to wait until we go out again tomorrow.
That example is pretty minor, but it’s one way Buddy’s health/T1D “messes” with our normal lives.
We’re adjusting. I will admit that sometimes it can be frustrating, but most of the time… his health is a priority we can’t afford to push aside, so we just go with the flow.
What does all that have to do with my writing, which is the focus of my website?
Well, like with everything else, Buddy’s health needs affect my writing. Midnight issues affect sleep, which makes writing hard. Buddy’s needs take up time during the day, which also affects writing. A health crisis–lows, super-high highs, digestive issues, etc–take up time, which affects the amount of time and mental energy I have left to write. And so on.
I’m working on the next book–well, next two books actually! (more about that in a moment)–but it’s slower going than it used to be. I’m trying not to let that bother me, but I do sometimes feel bad for not churning out books as fast as I can. Because I had goals set for this year when it came to the number of books I published. I had other personal goals related to my writing that I was aiming for as well.
I won’t accomplish any of those goals. In fact, I won’t even come close.
But that’s okay. It has to be okay. We have bigger things to worry about.
I know other people have more serious issues, a harder/worse time than what we’re dealing with, but this is our life, this is what we’re dealing with. This is our story. It might not be the same story a lot of T1Ds face, but it’s what we’re dealing with, and I’m sharing it because… it affects everything we do. Including my writing.
Right now Buddy is here at the table beside me, driving his hot wheel motorcycle across the table and acting pretty normal. But that wasn’t the case less than a half hour ago. He has issues that we’re dealing with that kept him–and us–up until after 1am last night. They resurfaced again earlier today and we spent ages getting him to feeling better. It’s not fun, but that’s part of this life we’ve been called to lead. Part of being the parent of a T1D kid.
I used to be able to sit up until 3am and still get up when the kids woke up. Now… not so much. I’m tired half the time and that affects my writing. However, I’m working on that. I’m trying to spend more time during the day writing now, instead of staying up half the night. So far it seems to be working. I have The Serendipitous Adventures of Maddison Case in the works. That book is super slow going (don’t know why) and so far, after working on it for six months, I’m not done yet. It is progressing, but the going is slow.
I got tired of working on the same book, writing maybe one chapter a week, and not really getting very far, so I decided to try something new. A couple of days ago I started Off on a Whim. So far it’s going great and the story is flowing much, much faster than Maddie.
Off on a Whim continues the story of Rhodes Crossing. Because my Taking Chances series isn’t the story of a group of people, it’s the story of a town. And this story… well, I haven’t decided if it’s Montgomery “Monty” Smith’s story, or Sheriff Cole Saunders’ story. Both will feature heavily throughout the entire book, but you’ll see a lot of old, familiar faces as well. You might even get to see a wedding…
But… no more spoilers. I’m not that far into the story yet and I don’t want to ruin anything for you. I think it’s going to be a fun read (Pippa is pretty spunky), but please be patient with me, and I’ll try to be patient with me, too! Buddy comes first, he has to come first–before my writing, not before anyone else in the family although his needs can be more pressing.
So if it comes to finishing that chapter I started yesterday or sitting in the bathroom helping to keep him calm when his insides are giving him curry (as my Aussie family would say)… the bathroom wins every time. And when he’s feeling well enough to go play again, I’ll go check his chart to see when he got his breakfast shot so I can calculate how long it will be until I start getting lunch because he’s running high today and I need to wait 3 hours before I give him his next shot so I can adjust for the high. Then when I have time, I’ll get back to work on the book, or maybe I’ll work on the new town map that might make it’s way to the website sometime soon, along with a list of characters…
My author friends might be out there announcing newly published books, or putting preorders up, but looking back over the last week or so, the most exciting thing I did was calculate Buddy’s average daily insulin usage. Pretty cool, huh? 🙂
Hi, Joanne, so sorry you are going through this with your son. I can’t imagine what it is like….I know a young mom with 4 children. The last one was down-syndrome. She soon learned that one of her older children had T1D. She was totally exhausted because she also runs a small business from her home. Today, she is doing pretty well but admitted it was rough in the beginning. I admire both of you very much. <3
Thank you. Right now, it feels a bit like the first months after having a baby, with the way life is disrupted until you figure out the new normal and the exhaustion that comes along with all the changes. I can’t imagine how hard it must have been for your friend. At least with me, I can set my writing aside on the days when I’m too tired (and none of our other children have any health issues). Your comment gives me hope though, that it will get easier over time, so thanks for that! 🙂