Next month we will celebrate our 3 year Diaversary. Next month. 3 years. 3 years living with Type 1 Diabetes in our lives.
Where has the time gone?? It feels like that diagnosis was yesterday. But yet, I look back at pictures from that time and all I can think is that he looks so small in them. He has grown so much. His body has changed so much. WE have changed so much. We have learned so much. We still - at times - hurt so much.
What I am struggling with more than anything right now is that we are STILL in the honeymoon phase. Almost 3 years later his pancreas still attempts to work from time to time. Out of the blue, always when we least expect it it will kick out enough insulin to cover the meal he just ate. Of course, we also bolus for the meal and so he is essentially getting a double dose of insulin.
A couple of weeks ago we had several of these instances in a row. He would eat, I would dose, and a half an hour to an hour later he was below 50... and it would take the same number of carbs he had just eaten for his meal to bring him up to safety again. One night this happened shortly after he went to sleep. I couldn't rouse him to drink the juice I knew he needed. He was REALLY out of it. He was 35 and dropping fast. It was the first time we have ever mixed a vial of glucagon... although, thank God we didn't have to use it that night. I finally got him to drink... he finally came around. But it wasn't pretty. And it was scary as hell. For us... and for him!
It was getting to the point where I was afraid to dose him after meals. I would check the CGM to make sure that he was starting a spike and then deliver the insulin. What I am wondering is WHEN will this stop? When we were diagnosed, they told us that the honeymoon period will most likely last 1-2 years. We are coming up on 3!! I am ready to be done. I am ready for his pancreas to throw in the towel and give up the fight. It feels weird for me to type that. It seems like I should be hopeful that it will not only work but continue to work and return to the full functioning life saving organ it once was. But, I know that will not happen. I know that instead, by its sporadic and untimely attempts at working it has become a potentially life ending organ.
That scares me.
A lot.
Oh, I SO know how you feel. According to our endo, Jack uses less insulin that he should for a kid his size, who was diagnosed nearly 4 years ago. The past several days, he's been running low, low, low. I swear his pancreas has been kicking out some insulin. If it's not going to work 100% of the time, then could it please not work at all?!
ReplyDeleteACK!
ReplyDeleteI don't recall a honeymoon at all over here. It was kaput from hello.
Praying that it putters out soon. Which, you're right, feels totally weird to say...but it's about time!
This whole things is wacky, right?! I know that for Isaac there are times when it seems like nada, nothing, no insulin what so ever is being produced then others it's low after low after low after low...so here's my other thought, it's not just the insulin that causes the ups and downs. It is everything else - the type of food, the activity level, the amount of sleep, the amount of REM sleep, growth hormones...blah, blah, blah...at least that is how I am seeing it. But I hear you, it is tough to not know, really tough. Here's hoping to no extra action from that good ol' pancreas there, just even steven, alright :)
ReplyDeleteI just read your post, and this same thing happened to us after three years. My son seemed to be having a lot of lows that just didn't make sense, and it turns out that had developed hypothyroidism. I didn't know that being hypothyroid caused many lows..it seems that I am always learning with this disease! This probably isn't the case with your son, but I just thought I would share!
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