A Sleepless night

Every 10 days, we have to replace Max's decom with a new sensor or it will expire, so last night we inserted his last sensor. They only send 3 per package, which should last you a month. I'm telling you all these little details because it's important for the rest of the story.

So I inserted the last sensor on his arm--normally a pretty easy thing to do. You put the sensor on the back of his arm, sticky side down, press the button, and then it's inserted. However, this time, it began to fill up with blood.

This is the sensor without the transmitter inserted yet.

This was not good! I wasn't really sure what it meant or what just happened, all I knew was that it was the first time it ever bled when inserting into Max's arm.

I was worried it would get broken if we put the transmitter inside but at the same time, I didn't want to peel it off since it was our last sensor. If we took off his last sensor, it would mean he wouldn't get his new sensor for at least a week to ten days.

I was hoping the blood would stop on it's own, so kept the sensor on his arm and cleaned it out the best we could with an alcohol wipe. I put the transmitter in, hoping for the best. But, much to my dismay, I saw that blood had continued to seep out, this time *through* the sensor, and most likely into the transmitter.

First of all, I didn't realize a tiny hole could bleed so much . I must have hit a capillary, which can cause a lot of bleeding. Second, I was very nervous now that all this blood would defintely screw up the readings! I got online with my support group and told them what happened (which is why I took the picture--wasn't doing it for the blog!) and they assured me that as long as the blood didn't get into the sensory holes (the two dots inside the sensor where the transmitter inserts) that all would be ok. Well, I wasn't positive that the blood had gotten inside but I could only hope. We started up his receiver, entered in the information that a new sensor was in his arm, and it did it's usual warm up procedure, which was a good sign. I told Max goodnight and we all went to bed.

Next thing I knew, I got woken out of a dead sleep by Max throwing the door open, holding the reciever with it's bright backlight shining in my face and said, "I'm low!"

You have to understand something about Max. He never enters a room quietly. It doesn't matter if people are sleeping, or if it's dark and you can't see. He somehow manages to march everywhere he goes without stumbling in the dark. And when he opens a door, he doesn't just open it, he throws it open. This is all the time--night and day. And when he does remember to knock when he's reminded, he doesn't knock, he pounds. He doesn't do this on purpose, but he's stuck somewhere in his own head thinking about something and this can make every little thing he does very intense. Anyway, being woken up like this out of a dead sleep can be very startling. And irritating.

But lucky for him, his low number saved him another scolding of entering a room so loudly when everyone is sleeping. I was shocked to see it the lowest number we've ever seen--40. And yet, he was standing there wide awake and alert, not seeming to feel any effects of being that low.

Nonetheless, we took a finger stick to see what it was at, and it said he was 90. That's still not considered low, but considering that he woke up on his own to check his monitor probably means that he had dropped low at some point and his adrenaline woke him up. So I gave him a snack just in case he were to dip low in the middle of the night and bid him goodnight again.

About a half hour later, again, he stomped into my room, threw open the door and again said in usual buresque way, "I'm low!"

This time it was 54. What the heck? We did another fingerstick and it said he was 140. It was way off and I knew it was probably due to the blood seeping into the sensor. I didn't know what I could do about it though. I didn't want to turn off the alarms in the middle of the night--just in case he were to have a true low.

It happened two more times when the alarm woke Max up and then Max rudely woke me up. He was getting more and more annoyed about his Dexcom going off claiming "Urgent Low" and "Dropping Fast--action needed" which meant he was getting louder and louder with stomping in the house.

The last time it happened it was 2:00 in the morning. I seriously didn't know what to do about this. I felt bad for Max because he had barely gotten any sleep all night but I was still hesitant to take his Dexcom off completley, which is the only thing that I could do. (If you shut down a sensor in the middle of it's 10 day session, you cannot restart it unless you have a new one, which we didn't.) It again kept claiming that he was "dropping fast" and in the low 50s. We checked his sugar again with a finger stick and it was at 150, which meant it was 200 points off.

I ended up calibrating it, which is a no-no to do when it is low (it's claimed that if you calibrate when the Dexcom is low it can screw up the numbers) but I didn't know what else I could do. It was doing no good being 200 points off.

I felt bad, but I left the finger poker with Max and told him that if it went off again, to just check his blood and if it was normal, to go back to sleep.

But then I couldn't sleep because I was worried, what Max truly was low and he was dropping fast from 150? The Dexcom can catch a low long before your body can, and it's not unusual to drop from somewhere as high as 150 all the way down to the 50s and 40s. Then my imagination led me to scary images of stories that I heard of parents finding their children in the morning, in a diabetic coma and covered in vomit.

So what did I do? I stomped downstairs and threw open the door (though I was trying to be quiet, but my anxiety made me frantic) and woke Max up. Poor Max, he had just gotten back to sleep too. But I had to recheck his blood if I was going to get any sleep at all. It dropped to 120, which seemed like a big drop in a short time but I refused to let it bother me too much or else neither one of us would get any sleep. I said goodnight and went back to bed and dreamed of Max stomping in my room, thrusting his Dexcom into my face and saying, "It says I'm diabetic!"

"That's because you are diabetic," I told him sleepily. That dream slipped away and a new one came, I was holding the Dexcom handbook, trying to read the "Trouble-shooting" chapter of when your Dexcom fills up with blood. (There is no such problem in the actual handbook, though I did look. My dream was more helpful than real life.)

In the morning, I was relieved to find Max just fine but not happy to find out that his Dexcom had given up trying to revive Max and presumed him dead, thus, ending it's session with him. Yes, the Dexcom seemed to come to this conclusion, saying "cannot get reading from sensor" and just gave up on him. How morbid. And so, as I sat on hold with the Dexcom customer support to figure out what to do next, Max surprised me when he said, "It's working now." He had been sitting on the couch in a sleepy state, just watching me as I was sitting on hold forever. "What? When did that happen?" I asked. "About a half hour ago," he told me in his usual casual way.
"And I've been sitting on hold all this time?!" I hung up.

So since the Dexcom had lost contact with Max's body, it somehow now made new contact, or else was thinking it did. It was very strange to say in the least.  It now said that Max was 140, which a normal number for him. We double-checked to compare it with a finger stick. Much to our surprise, the finger stick said Max was 101! So now the Dexcom was running high, while Max's blood sugar was actually a bit low. I thought it might be "catching up" after losing signal for a while, so left it alone for a bit and the next time we checked it, it was 160 and Max was 90. So now we were going in the opposite direction.

My new concern was now that the Dexcom would give a false high, which could lead to the school nurses giving Max a correction when his body didn't really need one, which could make him drop to a dangerous low. See what a mind game all this is?? You always have to think one or two steps ahead!

I ended up getting back on the phone with Dexcom customer support, who told me to take the sensor and reciver off. It had malfunctioned because of the blood, they said, and it would just continue to give us bad readings all day. They would send us a new one within the next few days.

So for now, Max is back to just fingersticks, doing it the "old fashoioned way", and I have to say that I'm surprised by how dependent we've become on the Dexcom. And wouldn't you know, Max ran low while at school. Just by dumb luck--or by the grace of God, I should say--he happened to check his blood sugar because he was going to have ice cream. He didn't even know he was low, as his body gave him no symptoms. That's the beauty of the Dexcom, to be better prepared for a low.

And so are the experiences of the type 1 diabetes, the disease with never-ending suprises with its roller coaster of real-life highs and lows. The longer we're on this ride, the more confusing it gets.

Rhemy the Racing Dog

Right now, I'm training my first Greyhound. I have never trained a Greyhound before, much less even been around one! I've only seen them on racetracks (on TV) but that's about it.

This Greyhound's name is Rhemy. She is a super sweet, mellow dog. If you want a mellow, not super-active dog, Greyhounds are your thing. They are also good apartment dogs, even though they are so long and take up a lot of space, because they're so quiet! A big misconception, because everyone assumes since they were bred for racing, that they must have tons of energy.

But actually, they just need one sprint a day at a dog park or somewhere were they can run free and they're done for the day. "Done" as in sleeping. They don't instantly recharge like other dogs do. They also don't really bark very much, so that makes them ideal as well. They are just content to hang around with you.

Rhemy loves blankets and pillows.

Rhemy came from China, where she raced in dog races. I don't really know what happened there, she seems well socialized and it doesn't seem like she was abused, although I'm sure as a race dog, they expected a lot from here.

We found numbers inside her ear. Reading up more on it, I learned that this is how they make sure they have the correct dog for the race--they tattoo it inside their ear. Can't help but wonder why tags wouldn't be enough?

She is also very skinny--even for a Greyhound. This poor dogs' ribs are sticking out and she has patches of fur missing due to alopecia. She was in a kennel a lot in China and they said alopecia is so common that they call it "kennel alopecia."

Her breath--I hate to say it--but it's the worst I've ever smelled and that's saying a lot because Ace has horrendous breath. She has a few teeth that are rotting (they're going to be removed soon) so that is why her breath stinks so bad. But in spite of all this, she is still a super sweet dog and the kids love her.

Anyway, Rhemy is an interesting dog. I've never worked with a dog like her. I'm so used to hyper dogs and having to be very assertive. Not with this dog! Greyhounds have an extremely sensitive temperment. Article after article cautions to be very patient with training and to never resort to yelling or impatience. You can get away with that with most dogs, but with Greyhounds, you can cause fear-aggression.

And it's true--wtih Rhemy, I don't need to do more than a "Uh-uh!" and that's it. She immediately puts her ears back and stops.

You might be wondering why she's here for training since she seems like such a perfect dog already.
Well, she might have a great temperment, but she doesn't know a thing. Not one command. Not "sit" "down" or "come". Not even her own name.

She has no sense of awareness. Her socialization has been very minimal--to dogs and people only. New situations--very little. Stairs--very little. (She was like a colt trying to climb our stairs.) Body awareness--none! She will stand in your way and won't "get the hint" and back off even if you are walking right into her space whereas most dogs are very sensitive about their space.

And their training capability is vey low. This is due to them being so sensitive and independent. They get bored easily and so training is hard to keep going. If you are starting to get frustrated with them, they shut down. And their independence of just wanting to hang out with you but not necessarily "work for you" makes it frustrating.

This may be the first dog that I won't be able to train.

So I'm focusing instead on building a friendship with her. If I can get her to bond with me, hopefully she will want to listen to me, and then I can establish rules with her. (She also counter-surfs--she is so tall.) If I can do this, I can hopefully encourage her new owners to just build a good relationship with her and hopefully just go from there.

So that is what I've been doing lately. Here is  short 2 minute video if you want to see a Greyhound run!



In other news, (not quite as interesting), Max's "lows" have been getting better. His doctor has switched his dose so that he's not getting as much insulin. Since then, he hasn't been having as many lows and there are some meals that he doesn't even need to dose for--which he loves!

I found out that his school is not teaching him any math (Max says he and the teachers decided to "give it up") which I can't really talk about because it makes me too upset. He still doesn't know how to multiply or divide. They were supposed to work on counting carbs with him but apparently they don't have time.

So this is something I'm trying to work on with him. He uses his calculator which still isn't like doing the "real" math, but for now, I'm letting him use the calculator. We write out what he wants to eat and then write out the carbs and then he adds it together. But I have to admit it feels like we're taking a step backwards; it takes a lot of time. Sometimes it doesn't feel worth it and I feel frustrated with how long it takes.

But what am I going to do--count his carbs forever? This is his disease, his body, so he's got to learn how to manage it.

The downside of the "support groups"--too much emotion!

So this diabetes journey truly is sort of a lonely venture...and it's not even really my disease. You have to have the disease (or be a caretaker for the person who has it) to truly "get it" and that's not to imply that those who do not have T1D are not sensitive....but it's just they can't relate and so that is one part that gets lonely.

The other part is the people that tend to truly think of this disease as such a cross. Although sometimes of course, it can be a cross and a suffering. But like anything out there that challenges us, it can be difficult and lonely.

I left one support group and joined another. This is my 3rd group that I have tried out. I still feel in need of one, however, not for emotional reasons. Only for information. They are good resources for the questions you have while you are waiting for your next appointment. Google takes too long to do research and sometimes doesn't even answer your questions. But the group does, so in that way, it's helpful.

The way it's not helpful is how so many people are so EMOTIONAL over their T1D children. Ugh, I do get it, at least I think I do. But the amount of anger and emotion is really hard to listen to. One lady posted an angry post how she felt that other parents should be more courteous of her T1D daughter and not send cupcakes to school for birthdays since her daughter can't have cupcakes (which she can, I'm not sure why she just doesn't bolus for it??) She wanted to send each parent a letter asking them to not send carb snacks for birthdays. If I did something like that, that would be social suicide. Why on earth would you set yourself up for that? Or for your kid???

Another lady posted a very angry post (against diabetes) saying "F---- Diabteses, F---- what they do to our kids..." and on and on she went. I wondered what on earth happened to make her so angry. Reading on, it sounded like her 4 year old was throwing a fit over having to insert the Dexcom (it has to be replaced every 10 days.)

Well, I'm not saying Dexcom's are easy to wear, (although I hear that pumps are much harder to wear as they do actually hurt when inserted), they do insert with a needle, afterall, and I'm sure it's a little more difficult for the younger children to understand. But from what I've heard (and seen with Max) is that the Dexom barely hurts. And I don't mean to be insensitive to this child, but I couldn't help thinking of how my kids have thrown a fit over having to eat food they didn't like, or take a nap when they didn't want to...and I didn't sit there thinking, "F---- childhood! It makes our children suffer so much when they have to do what they don't want!"

I had just commented on a post when someone complained of their school nurse helping too much with her daughter's diabetes. A bunch of people actually applauded this nurse and I chimed in with saying that it sounded like the nurse was a little "over-zealous" and just really wanted to help her child, but should of course be respecting the parents wishes for how fast they wanted their daughter to become independent.

Oddly enough, out of all the comments on there (over 70 of them), this commenter got on my case for "defending" the nurse, saying that regardless of her intentions, this nurse overstepped her boundaries and so on. Even though i pretty much had said the same thing, she just didn't like that it came off like I was defending the nurse.

So much drama!

This is the stuff that ends up making me leave,  the crazy emotional upheaval that comes with people. I know we are all different, come from different places and everything. But I don't want to fall into that sort of thinking. I don't want to be angry or depressed. I do not want to fall into self-pity. It would be so easy to do. I would gladly be done with a support group--and hopefully that day is coming soon--but I still need their help from time to time.

Anyway, this post is just a vent. Things with Max are going fine--great, even. He still has been falling a bit low every day, but nothing horrible (just 70s.)

I am teaching him to count his own carbs but this is a work in progress. Not to say Max can't do it but he gets overwhelmed easily. And the more food he has, the more carbs he has to count. Sometimes it's just easier to do it yourself, but it's good that he learns to be independent.

I can't wait for the day when we will feel pretty self-sufficient with diabetes and can handle everything on our own (with the exception of the doctor of course.) And I hope that some of these very angry people will eventually find peace with their diagnosis.

Another scary low

It's late and I need to go to bed, but what a day!

We've had another interesting turn in Max's diabetes. We keep being told that this is all pretty normal in the beginning, all these little issues that come up. Here I thought that the beginning (the honeymoon period) was supposed to be the easy part but it hasn't seemed like it!

So basically Max has been running low for a few days. He would have at least one low a day (anything under 80) but the weird thing is that he would get his "low" after eating. Ok, this is very weird and very undiabetes-like! Honestly, if he hadn't had those crazy highs before diagnosis, I would be wondering if Max was truly diabetic afterall.

Usually, when we eat, our blood sugar goes up but our insulin kicks in to control it. For diabetics, of course, they need insulin, but it does take a little bit for it to kick in, so it's not unusual to see the blood sugar spike up in the 200s and then slowly come down.

Well, these past two days, Max has actually had a low after taking his insulin. He ate his lunch at school the other day, and his Dexcom beeped saying he was 72. He went to the nurse, who was baffled, because the blood sugar should have been going up, not down.

Then today, it happened again. About a half hour after lunch, he came upstairs saying his Dexcom was saying he was 68 and falling fast (with a downward arrow meaning falling.) I gave him a 4 oz juice box and it kept falling. Then Skittles, then another glass of juice. It fell all the way to 52 and that is when Max begins to get clammy and sweaty. We realized that his body is tolerant only until about the 50s and then it begins to get very uncomfortable for Max. When he's in the 40s, he becomes nauseas. He hasn't been lower than 40 so we don't know what would happen if he hit the 30s. Anyway, you get the idea, so it was very scary!

I got on the phone with the Children's Diabetes to see if they could help and as we were talking on the phone, Max's blood sugar SLOWLY came back up. It took forever. I finally sent him downstairs when he was 76, which is still technically low, but it was taking so long for it to come back up and he was feeling a lot better, so I let him go but told him to come back if it began to drop again.

Anyway, the nurses changed his Basal (long-acting insulin) down to two units and then his bolus insulin another two units down. So altogether, he should be taking four units less of insulin. Let's hope that does the trick!

They said his body is "honeymooning", which means that it is producing more insulin than normal, causing him to "over-dose" himself. The problem is, we never know how much his body is going to produce, so it's a guessing game. It could go back to just trickling or it could go back to spurting, which is what it was doing for the past few days.

Honestly, these lows scare me and it took a lot for me to not let Max see how scared I was. My hands were shaking and every so often I thought I was going to lose it. Not seeing his blood sugar come back up after all that juice and sugar and just see it continue to plummet, I can't even explain it. You feel so helpless. I was between trying to figure out if I should call 911 or give him the emergency glucogon. They say you get used to this sort of thing, but I don't see how.

The CGM--my first impressions

Well, Max's CGM arrived yesterday, and after a super busy day of dog training, puppy play dates, a dog nearly constantly having accidents, customers coming to pick up their dog at the end of the day, and a school concert, we FINALLY got to put the CGM on Max! It was 9:00 at night by the time we finally got around to it, and the CGM arrived at 10 in the morning.

Inserting it was the easy part. Pairing the receiver with the CGM was a little bit more complicated, but not too bad. What bothered me was that it needed an additional two hours to "warm up" to Max's body and get some readings before it could give us a first reading. Which meant we were all in bed.

But when it finally gave us a reading, Max's blood sugar was high, so that meant that his first reading was an alarm. I didin't correct his blood sugar, since it was only 199. That is considered to be high-ish, but not too bad for before bed, since blood sugar tends to fall during the night anyway. Well, I guess it kept beeping at Max for a good part of the night, doing a good job of sending him warnings that his blood sugar was high, even though it was actually coming down. So I guess you could say the CGM was doing it's job--much to Max's annoyance.

I might adjust the alarms, haha.

Overall, we like the CGM. We've barely had enough time to really get used to it, but it was nice just glancing at the monitor, instead of doing the whole checking with the blood thing.

We have yet to get the app on my phone (not compatible) and there's other little glitches, but the bottom line is, we have the CGM and it's working well. Now to enjoy it.

Max is getting a CGM!

***Edited to add:  The school nurse just called and said that when she checked Max's blood sugar before lunch, he was at 78 and didn't even know it. Just another reason why we're happy why we're getting the CGM!


In two days, we will finally be getting a CGM for Max! I think I'm the only one in this family who is truly excited about this, but soon everyone's going to be happy. It means a little more normalcy that we knew before, and it also means some peace of mind.

If I haven't explained what a CGM is before, it stands for Continuous Glucose Monitor (or Meter). It's a device that you wear on your body that constantly is monitoring your blood sugar and sends you updates every five minutes. This means no more pokes.

Honestly, the fact that he won't have to poke his finger anymore (or at least not as often) isn't really my cause for celebrating, although of course I'm happy he will be spared his blood. For me, it's the worry. In order for you to understand the worry, I think you would need to live a life of diabetes or have a loved one that has it. Preferably someone type 1---not that type 2 has nothing to worry about. But their diabetes usually tends to be easier to control (depending on the person of course.)

The CGM will ease so many of my worries, even eliminating many of them. One of them being Max having a low during the night.Most of the time, our blood sugar goes low during the night because we aren't eating. For diabetics, this can be dangerous. It is hard and scary for me to give Max his "backround insulin" (slow-acting release insulin) because we give this at night. I worry that it will make him go too low during the night, although I've been told that it's too slow acting for that to happen. The CGM will track his blood sugar all night, alerting us to any dangerous lows (or highs) that he may be having so we can wake him up to treat him.

I can't even explain what this feels like to me, to have this worry gone. Worrying about whether or not Max will either fall into a coma and pass away in his sleep is a DAILY concern for me. There isn't one day that has gone by since his diagnosis that I have wondered if Max made it through the night. This sounds morbid and depressing, I know, but like I said, until you live this life, you have no idea the crazy thoughts and worries that go through your head. Especially days when Max sleeps in and he doesn't make an appearance for breakfast. I never send the kids downstairs to wake up Max because I'm afraid they will discover him dead. Instead, I go downstairs and I cautiously open the door--first smelling the air for the smell of death. Then I check his feet, because he has to sleep with the covers over his head, making him look even more like a corpse which doesn't help. I look at the feet for any mottling. And it's always a relief to see pink, healthy feet!

Yep, I know what you are thinking! How horrible that she does this! You might even think I'm being overly dramatic, but I'm not, because dying in your sleep is a pretty common thing for people with diabetes. Guys, I can't explain this in a way that won't make me sound neurotic. You have to live this life to understand what it's like, to know that each night when you say goodnight to your son, it may be the last time that you do. The first few weeks after Max's diagnosis, I barely got any sleep. I worried constantly that he would run too low. I would wake up multiple times wondering if we should check on him, but worry for disturbing his sleep made me wait until morning. This meant waking up nearly every hour, waiting for morning. It was a horrible way to live, constantly in worry and fear.

Eventually, I learned to hand Max over to God each night, and I still do this. When I finish blogging, I'll be turning in myself and will have to pray again that God will "keep Max safe" as I always pray. And at the same time, releasing him into God's hands that it may be that one day, God may take Max. It's only because of this daily surrender, that I can get any sleep at all. I can't say that it's easy, but it's helped me to trust and find a little peace.

But the CGM is an answer to prayer. I've been waiting for this answer!  I now have a "babysitter" that will monitor Max as he sleeps. If he dips too low, it will wake us up to give him some sugar. If it spikes too high, it will wake us up so we can give him insulin. And yes, ideally, this should be his own responsibity. He will have a monitor as well to wake him up. But it's always good to have a back-up, in case he doesn't wake up.

And it's not just about nighttime. I worry about activity and stress. Because too much activity and stress can make your blood sugar fall low. It can be treated easily, but there are times when the blood sugar won't go back up. And, I've heard that there are times you can't get your blood sugar to go back down when it's running too high. So far, this hasn't been a problem for Max, since he's still in his honeymoon stage.

The CGM means that I will be able to sleep at night (at least until the alarms go off.) It means no more scary lows (or at least, less of them.) It means catching the lows that go too fast. It means much more safety for Max.

And yes, it means no more finger pokes! It means just glancing at the meter instead of pulling out the meter, test strips and all that stuff just to figure out if your are normal or not. It even means no more bloody test strips lying around. A lesser evil but still.

It means getting a little bit of normal back.

I'm very excited, as you can probably tell. Max doesn't understand what the big deal is yet, but he's in for a treat.

I may even do a video of us inserting it into for the first time (if he lets me.) We will see.

Just two more nights of this feeling--the feeling of taking a risk, walking without a net. And so I end this now as I end every night, "Dear Lord, please keep Max safe tonight."
Amen.

Worries

One of my big concerns right now is trying to teach Max how to self-manage his own diabetes and I often wonder if I'm expecting more of him than he can do manage. At the same time, I don't want to ever under-estimate him. I don't want to limit him because of my own worries and fears.

True, we are only a month and a half in since his diagnosis. Maybe I'm expecting too much at this time. But knowing Max as I do, my worries are not completely invalid. This not just a nervous-mother thing.

A couple examples:

• This morning I asked him to check his blood sugar. He said ok and got his medical bag while I made breakfast. When I looked over, I saw him holding his insulin needle. He was about to inject himself without first checking his blood sugar AND inject himself without setting or knowing what the dose was first.

• Yesterday he primed the needle (squirting out excess insulin that has been sitting too long between doses) and then nearly primed again, wasting his insulin dose. He probably then would have (out of habit) simply poked himself with no insulin, thinking he had dosed himself without actually doing it.

• The day before yesterday he did the same thing.

• The day before that, he did the same thing again. 

• Yesterday when we left for church, I found his diabetes stuff all over the couch but his medical bag missing. I found him waiting for me in the car. I asked him if he had his medical bag and he said yes. Then I asked him if he had anything in it (wanting to know if he realized it felt unusually light) and he said yes. I then showed him all the stuff he left behind. 

And then there are the smaller issues, but still important, about him leaving needles lying around, throwing them in the garbage (a big no-no), leaving dirty test strips around, and being careless about his needle when holding it (he tends to wave it around, making me nervous he's going to accidentally poke one of the visiting dogs in the eye. They tend to always want to see what he's doing with the bag and hover around him.)

It is what it is. That's all I can say about things that I have no control over. I believe that one day Max will be able to manage his own diabetes. But sometimes when the unexpected comes up, like it did the other day, those are the challenges that Max could find difficult to manage. All I can keep telling myself is that that "one day" will eventually come. 

A scary low

So yesterday we had a scary incident with a very low blood sugar with Max. These "lows" just pop out of the blue sometimes, with no explanation for it.

I had bought a new meter that was very cost effective--the test strips being only $10 for a quanity of 50, which is great! But the meter kept malfunctioning off and on, basically not reading his blood or saying it couldn't get a reading. This would happen off and on, and because I just bought the meter, I didn't want to give up on it yet, thinking perhaps we just hadn't figured out all it's little quirks. Plus, like I said, it was really great for saving money.

But then last night as we were doing Family Movie night, we gave Max his bolus for supper (bolus meaning covering the carbs he's going to eat with insulin) and almost immediately he became weak, flushed and nauseaus. We had just checked his blood sugar and for once the meter was working--it said his blood sugar was 103 which is a good reading. His blood sugar had been good and steady all day, so the reading made sense to me, but the symptoms that he was having did not.

He also was not doing his usual shaking that he normally does, so I wrote off a possible low blood sugar off the list.

But he was getting worse, more flushed, sweaty, saying he was going to throw up. We encouraged him to eat his pizza since we had given him his insulin, and he forced himself to eat even though he felt like it was going to come up.

When he had to lay down and couldn't find the strength to sit up, I became more worried. Despite the fact that the meter said his blood sugar was normal, his symptoms were alot like that day in the doctors office when he dropped to 53. I contacted my support group on FB and let them know Max's symptoms and immediately replies came pouring in saying it was all signs of low blood sugar and I should give him a snack.

I wrote back saying that the meter said his BS was only 103 and that he wasn't shaking. But I gave him a cheese stick with fruit snacks anyway.

He began to do a little better but despite this, the moms in the group encouraged me to recheck his blood sugar anyway. I rechecked--this time using our old meter that has been more trustworthy and was shocked to see that it was 73!!

Ok, 73 in itself is not really a scary number--it is low and should be treated, but not an emergency low. But the shock came from thinking the other meter had given us a good reading only five minutes before.  If he was 73 now when he was doing better and feeling better--then what was he when he was nearly passing out??? I will never know, because of that stupid meter, but because his symptoms were so extreme, his numbers may have been in the 40s or even 30s.

As dumb as it sounds, I felt cheated and lied to with that other meter. You learn to depend on these things and trust them--you are literally trusting your child's life in technology, which is a little scary when you think of it, because technology can always fail you. But we've become so dependent on technology and it's sophistication, that it's hard not to.

Anyway, I wanted to throw that meter away, but I didn't. I don't know what I will do with it--I don't want to bring it back because I don't want it to be sold to someone else and have the same thing happen to them, so I guess I will just hold on to it.

But back to the story--after giving him fruit snacks and a cheese stick, we assumed he would be fine now. Nope. Soon, he was starting to complain of nausea again, so we checked his numbers again. It dropped down to 66, which was a first for us. A first, meaning that normally when we treat his blood sugar, it goes up and stays up. This was a first that it wasn't coming back up.

I gave him Skittles, and more protien. The protien helps stabablize the numbers and keep it from dropping again. I learned this thanks to my Mom's group.

I waited fifteen more minutes and checked again and this time it went up to 81 which is ok but not great in my book. It was still too close to teetering on the edge of dropping again. This time I made him drink half a glass of milk--he hated that because he hates milk--and when I checked again in 15 minutes, it was up to 91. To save his fingers, I told him we would wait for the bedtime check but if he felt any symtoms to tell me immediately.

"What if it goes down again and won't come back up?" was the question we all had. We've never been in this situation before and it was scary. I didn't like that it was so close to bedtime either. "Go to the emergency room" was my immediate solution but then I realized that this wouldn't really do any good because they would probably do the same thing that we've been doing, and his numbers could drop even more because of the stress. This is where I reach out for past experiences but realized all my past experiences for scary solutions was before diabetes. I had no experiences for post-diabetes. Overall, it was just a very helpless feeling.

"We'll have to break out the glucagon," Dennis piped up. I didn't even think about that but realized he was right. The thought of using the emergency glucagon made my stomach turn--I guess because it meant "emergency" even though it could be treated at home. I felt nervous thinking of jamming a needle into Max's leg and wasn't sure if I would know how to do it. They send you home with video tutorials and a fake needle to practice with but that was about all the training I had with glucagon.

Thankfully Max never needed to come back upstairs for more sugar. I could hear him singing his anthems cheerily away through the vents. Normally his singing can be a bit loud and grating on the ears but tonight it was a welcome relief of "normal." We didnt' need to break out the glucagon after all.

When I checked his numbers again before bedtime, it was all the way up to 188, thanks to all that sugar. I was ok with it and we didn't give him a correction, for fear it would cause low numbers during the night.

We need that CGM. I say this nearly every day, and for sure, every time his numbers dip low. A CGM could save his life. It for sure will save us a lot of stress.

This morning, Max's numbers are still a bit high but coming back to within normal range. We are back to normal for today. Such is diabetes. Normal and then "not normal" with no warning. But we are making it fine.

The Ultimate Compliment

These past few blood tests, Max has been running low. We had our first low number yesterday of 83, then 76, which were bad enough. But today he went all the way down to 53 and this was very scary. To think that there are lower numbers....I'm not sure how to face that.

Thankfully, we were at the doctors when it happened. We had a drs appointment for Luke, who was scheduled for a med check when Max began to complain of feeling shaky. "Yeah, he is shaky, look at his fingers!" Luke said.

Seeing that we had been through this twice before, I didn't get too concerned but I did tell Max to check his blood. Thankfully, I had a last minute thought of bringing our finger poker before we left. Otherwise, the school has the extra one but I figured we should bring ours, just in case.

By the time we finally got Max's finger poked, he was down to 53, shaking, flushed and diaphretic. I was so surprised at the low number that I could hardly think straight but I was trying hard not to panic. Thankfully, that's when the doctor walked in and we explained what happened. I gave him a fruit snack and the doctor went and got him a Coke and even though the doctor said Skittles weren't necessary, I snuck two of them to Max anyway, when she wasn't looking. Fifteen minutes later, he was back up to 107, which is a good number.

The appointment was for Luke, but it was really hard to get my focus back on him and not keep casting anxious glances at Max, who was recovering, lying down on the table. I noticed the doctor giving some anxious looks as well.

Later, we put a call out to the diabetes nurse who adjusted Max's dose of insulin, guessing that it was too high. She said it was very common to keep making adjustments, especially in the beginning.

But all I could keep thinking was, how long are we going to have to live like this?

I mean, I know it sounds very selfish to just be thinking about me, and maybe it is, but a mother's heart can only take so much. I know ups and downs is just a part of diabetes, and you have to make adjustments accordingly and eventually you do get used to it. But right now, at that moment, it didn't feel like we would ever "adjust".

Later, after the appointment, I had to drop Max off to school. It was his first day trying out school lunch since he's been diagnosed. So that means the first time of a new routine of stopping at the nurses's office, counting carbs, getting insulin and then eating. I hadn't been too nervous about it until the super low number at the doctors, and the last thing I wanted to do was drop Max off at school, even though it was only for a couple hours. I wanted him safe at home with me.

But obviously we can't live like that. I know that. I know it in my heart that we have to keep living our lives. But there are moments when it's just so hard to keep trying to have a normal day after such a scare.

When I got home, I finally got myself some lunch, put on a show, but couldn't concentrate on it or taste the food. It felt like I was trying to swallow cotton balls. All I could think was, "What if he has another low number and can't make it to the nurse's office?"

I put Max into God's hands once more because there is nothing else I can do. There is nothing anyone can do or say that will put my heart at ease, but I know that I can put Max in God's hands. And if He decides to take him, then that was the best thing for Max, as hard as it is to see it that way. And at that moment, when I put Max "my treasure" into God's hands, the words formed into my mind, "It is the ultimate compliment to hold such a treasure."

Whether that came from God or just my own fanciful imagination trying to make me feel better, I don't know, but it did the trick. It made me feel better. There is no better compliment you can give God than trusting Him with your greatest worries, your biggest treasures and what matters to you most and letting Him take care of it for you. Trust is the ultimate compliment.

Sometimes you just gotta laugh...

So Max told my embarrassing story about me over-dosing him the other day to his teacher, and he was laughing as he told it. Misreading the entire situation, his teacher immediately reprimanded him and said, "You shouldn't be laughing about this! This is a very serious situation!"

Sigh.

Well, she'd probably be equally horrified to hear that I encouraged Max to laugh and that I was laughing as well.

Yes, it was scary. Yes, it was a serious mistake. But I can guarentee you that I'll be making plenty of them. And one of these days, Dennis will mess up too. (I'm just waiting for it.)

Max didn't know that once I got him all the carbs he needed to have, that I was having a panic attack outside on the front steps, trying to get over the scare. Dennis was on the phone with me, trying to get me to calm down, because I thought I was having a heart attack (I always think that way, sometimes it's hard to tell the difference.)

And he didn't know that as soon as I realized my mistake, everything turned cold inside me and my tounge felt like it got two times too big for my mouth. I thought I was going to be sick. I felt like I poisoned my own son.

I wanted to sit down and cry. I was about to call my mom on the phone and tell her again how imcompentent I am to do this, how one day I might end up making a deadly mistake, and how scared I've been. But just as I was about to dial her number, I thought to myself, how many times am I going to do this? Call mom up and exhaust her with my emotions? I've got to decide from here on out how I will handle mistakes; I can beat myself up over them and cry, or I can chalk it up as a learning experience.

So I put the phone down and we laughed about it. It took the edge of and we felt so much better. And we realized too, how God really is in this. Yes, I may be terrible at this but I am learning. I'm getting better. I can now give (somewhat) pain free shots. Max can prick his own finger and check his own blood. We are getting there. And for the times I mess up, God steps in.

So we are going to laugh at the dark times. We will probably tell inappropriate stories of how close Max came to death and then laugh at the fact that we (his parents) were the ones that did it.

It doesn't mean we're in denial. It doesn't mean we don't understand. We are just tired about crying over it.

Because really, who can live like this? Constantly in fear and constantly on the edge of your seat? I know I can't and I sure don't want Max to live like that either.

So don't be too surprised if you hear me say "Oops!" And then we giggle. As long as Max is still standing upright and talking, he's ok.

Yep.

The first thing we learned in the hospital was how to learn to LIVE with diabetes. Yes, we learned about the scary stuff. But constantly interjected was:

"You're going to make mistakes. And that's ok."
"Don't get hung up on the numbers."
"Get back to a normal life as soon as you can."
"Don't beat yourself up."
"Don't get on Max if he cheats his diet, and for goodness sakes, don't call it 'cheating', call it a choice."
"It's ok to be sad."
"It's ok to process your angry/unpleasant emotions."

But most of all, it's ok to laugh.

We need to laugh. It is good medicine.

Haha, yep, they're everywhere.

So we will be laughing sometimes. And as always, we will be crying some times too. But hopefully, there will be more laughter than tears.

Get used to the inappropriate jokes and memes, people. Pintrest has a whole pile of them just waiting to be used.

Taking a walk with Our Lady

On about the sixth or seventh day after diagnosis, I was still struggling quite badly with this huge change. I could get no relief from my constant sadness and anxieties. I had dreams about diabetes every night which normally were about hospitals, or walking into a room and finding a faceless dead person. Or bizaarre dreams, like that something was making my legs itch and I pulled one needle after another from my pants.

 I tried to seek comfort from wherever I could: family, friends, social media, support groups. But I could  find no relief. This ache inside of my heart would not leave me. The sadness was constantly there, like a cloud that followed me wherever I went. It didn't matter how much I tried to distract myself with every day things or going on Facebook and chatting with family and friends, venting and talking to my online support group. Actually, trying to fit back into nomal life made me feel worse; like I was ignoring the nail stuck in my foot and trying to walk with it, rather than pull it out.  I felt even more alone and I realized that although I had a lot of supportive people around me, no one truly understood how I felt. (Except for my support group.)

I felt angry with them because I could tell that they felt that I should be over the shock by now. I felt let down and disappointed that they couldn't be there for me when I needed them most. But then I remembered, that only a week ago, I was the same way. I've known type 1 diabetics and never understood their pain. I didn't understand really, what the big deal was (though I was smart enough never to ask.) Especially when they said they could still do whatever they wanted, live their life, eat whatever they wanted. So what is the big deal then? I didn't get it.

Well I won't speak for other T1Diabetics, especially being so new into this. I can only answer for myself. As I've said so many times before, I'm not an organized person. I'm not really a health food person. I don't look at nutrition lables on food, and I don't care if we don't have organic foods (too expensive anyway.) Being organized and intentional with food is not my talent and never will be. It comes naturally to some people and they seem to enjoy it. But it's not my thing and I'm ok with that.

Except for when THIS happened, the most important thing in the world: my son's health. Now I have

to be thoughtful and organized. I have to REMEMBER things. I can't shrug things off if i forget to give Max his lantus shot. I can't shrug my shoulders if I added the carbs wrong and realized I gave him the wrong dose of inulin.I need to count every carb. I have to make decisions about what he can eat today.. I have to check his blood sugar five times a day and make sure we are in it's target zone. It is overwhelming ,it is every meal, it is every day. And don't even get me started about sickness and how everything doubles even more, plus watching out for potentially deadly ketones.

And yet Lord, You give this task to me?? Me, who sometimes forgets to feed the kids while I'm eating my lunch? Who never knew that an apple is a carb?? That innocent red apple can be bad for my son?? Ok, maybe it won't kill him outright, but it would mess up his sugars, make them shoot upwards and You think this is a good idea to hand the reigns over to me??

Diabetes might be manageable---but I have to manage it or my son will die. That is what the big deal is. And I wasn't prepared for this.

That night I hit the ultimate low, I began to cry and then it wouldn't stop. It started as a trickle of tears but then it became a torent. And instead of getting relief, it just got worse.

I turned to God but He felt so far away. I knew He was listening, I knew He understood. But my heart couldn't open. I turned to my Dad. To my guardian angel. And though I felt their love, there was no relief.

It was then that I turned to Our Lady and my heart immediately opened. Here was a Mother who understood my pain. She understood what it was like to see her Child suffer. Though her suffering was much greater than mine will ever be, she didn't belittle it or try reason me through it. She just understood it.

I imagined her standing in front of Simeon, listening to his prophesy of how Jesus would suffer and thought of how I felt when I heard the doctor say to Max "You will have this forever." I wondered how she felt when heard her own sorrowful news. That her Son would be hated by many and would have to suffer for so many that didn't care for Him.  There was nothing she could do about it either, no way that she could protect Him from this demise. The difference between us being that she wouldn't have tried to prevent the pain, whereas I would.

Then I saw her following her Son as He carried His cross. Watching Him fall and slowly get up again. Watching Him abused and belittled, mocked, scorned, stripped naked and hanging on a cross. And I couldn't help crying out to her, "How did you do it??? How did you just stand there and not fight them off? How did you make yourself accept it? How did you keep living when inside you were dying???" This is love I couldn't understand and still don't understand. This strength that she had to allow this horrible death for the sake of us, people she never saw in her own lifetime or had any connection to. The only people she saw at the time where the people killing her Son and she somehow was able to allow it even though it was killing her.

I fell asleep dreaming about our Lady and when I woke up, I had a plan in my head of what to do. I would take a walk with Our Lady. She would walk with me as she had walked with Jesus and she would teach me how to deal with this pain. But I had to be alone to do this. No social media, no trying to get people to understand me and my pain. For one week, I had to be completely alone and walk only with her. And the way I would do this would be praying her Seven Sorrows every day. I would mediate on her sorrows and she would walk with me through mine. I would gather strength through her. My journed has just started, but every time I feel the same sense of gloom come over me, I go to my room and say the Seven Sorrows and I cry--I cry for her sorrows and sometimes I cry for mine. But the tears are no longer sad tears but hopefully, healing tears. Turning my focus to her sorrows somehow has made mine more meaningful.

Interestingly enough, a week or so before Max's diagnosis, I thought and meditated a lot about humility. I prayed the litnany of humility often--something I didn't normally do for fear of God giving me something really embarrassing to be humbled by. But, I've learned that thinking in this "taboo" way is not only stupid, but also dangerous, because our pride (ironically enough) gets in the way for praying for what we need most, which is humility.

I wondered for a while if it was because I prayed for humility that Max became sick with diabetes. Because let me tell you, I've never felt so stupid, so weak, so self-centered in all my life. Always thinking about me when I should be focused on Max. But always feeling weak and overwhelmed though I wanted to be strong. And always feeling stupid about just the basic things about nutrition that I should have known even before diabetes. Perhaps God was humbling me with my very apparent prideful way I thought of myself and wanted to bring me down to size.

But then I realized that most likely, God was preparing me for this time by prompting me to pray for humility. I was nearly obsessed for days with thinking and talking about humility, praying to be stronger in this virtue and praying for the courage to be wrong, not consulted, over-looked, ignored. I wanted to want this though it sounded so lonely and a hard way to live.

God didn't strike me or anyone down because I prayed for more humility. He gave me a grace period to strengthen myself with prayer, knowing that this time in my life--only a week and a half out--would be very hard. Would test my courage, my pride, my confidence, my "smarts."

I know that just like any big change in our lives that God allows, it can "make us or break us." They say it's all how you look at things and attitudes. And while I agree wtih this to a point, I 've learned that it's about being completley weak and leaning against God for strength.

I'm defintely not there yet. And I know that there's still going to be times when I feel stupid, alone, misunderstood, lonely. But that is why I'm taking my walk, a walk with Our Lady. And I don't want to come back until I've learned everything she wants to teach me.

Honeymoon period

Max is in what is called "the honeymoon period", meaning that his pancreas is still working enough to produce some insulin to near normal numbers. I am getting this information off of a website, our doctors, the diabetes center, ect. I really have no idea if his pancreas is making enough insulin for near-normal numbers but this is what the honeymoon period means. Most people have one, after being diagnosed with diabetes, but not everyone does.

I'm not sure if Max is truly in the honeymoon period or not. It's been tough getting his numbers down to his target range. If he is, I don't think it will be lasting long because it hasn't seemed like much of a honeymoon.

At the same time, it could be worse. His numbers may have been high but now they are in the normal range, with the help of insulin. Sometimes at night, I don't need to give him any insulin, and am hesitant to give him some anyway, in case it dips down too much during the night.

If this is what the honeymoon is like, then I'm not sure I want to see what happens afterwards.

I am off of Facebook and all social media (well, except for blogging) because I need to be. I am taking a walk with God during this time when He and only He, knows what to do for me. I have continued to struggle with this, and according to everyone who has been through this, will probably continue to struggle with this for weeks, if not months, although everyone is different.

It is a relief to know that the struggle is normal. And human. And even ok. It is just part of the adjustment to a different life we never thought we would have.

No honeymoon period for me.