You think you know, but you have no idea…….

di.a.be.tes noun  : any of various abnormal conditions characterized by the secretion and excretion of excessive amounts of urine;

Sorry Webster’s dictionary but I’m going to change your definition of the big D up a bit

di.a.be.tes noun a monster that feasts on the bodies of unsuspecting victims, wreaking havoc throughout their lives, never permitting a full night’s sleep,always awake, always feasting, never takes a vacation, and so dangerous that the sound/word (DIE) is in it, and that is very well what it can do to you.

Today is True Life Tuesday for WEGO health. So let’s start this post with all the truthfulness of diabetes and what it brings

You think you know but you have no idea…… When it hits you or in our case, hits your child, you are not prepared. You are not prepared to watch your child laying in a hospital bed unconscious because high blood sugars are running rampant through his body. You are not prepared to hear the doctor’s explain to you that your son has “Type 1 diabetes”, and you are definitely not prepared to hear them explain it in a way like it’s no big deal. I’m here to say unfortunately it is a HUGE deal, and I wish they would have explained it that way to me in the beginning other than it’s no big deal! Oh yes and guess what no practice, here’s a needle stick it in his arm and give him this life saving medicine, and you have to now do this 6 times a day! I for one was not a fan of needles from the get go. I never could look at them when I was getting a shot. But now I have to do this to my son!!!!!

Fast forward, you are not prepared for a low blood sugar that causes him to pass out. Oh yes and you’re definitely not prepared to give a glucagon injection with your hands shaking trying to stay calm because there are two other kids watching on, trying to act like “it’s no big deal” while on the inside you are freaking thinking you are watching your son die before your eyes.  You definitely are not prepared to watch him have a seizure again because of “DIABETES” which remember is NO BIG DEAL! Thankfully these events are not something we experience on a daily basis, however the things we do experience on a daily basis are almost as scary.

*making sure to count and weight food/carbs diligently so that we don’t have one of the incidents above from too much insulin

*keeping him alive throughout the day. Doing this by giving again this “insulin” that could also at the same time kill him if given too much

*NIGHTS! Don’t even get me started on nights. I hate nights. I love sleep, and well those two just don’t’ go together anymore. It’s either a battle to keep blood sugars down, or a battle to keep them up. Or like one incident in the morning from blood in the cannula a battle to bring numbers down while getting rid of those deadly ketones!

I’m so tired of blood and everything else that comes with diabetes that my head hurts! I’m just tired of diabetes in general which you can read about here.

So here’s the true life according to this post. Diabetes sucks! Our life however is wonderful, I wouldn’t change a thing, well except maybe give Clifford a “WORKING” pancreas! Stupid pancreas and Damn Diabetes” For now I’m his working pancreas, until he’s given the duty of being his full time pancreas. Oh and case I forgot to mention it Diabetes You SUCK!

So tired of diabetes…

 

Just so tired of diabetes, and what it does to him. So tired that even though it’s bedtime the night is not over. That the battle cannot even be done for rest time. So tired that when I wake up in the middle of the night unexpectedly I think it’s God’s way of telling me to go check on him. I can’t get back to sleep until I do. Even more tired of the fact that he is in fact low at 2am sometimes out of the blue! So tired that yes my mind goes there, “WHAT IF” I didn’t wake up unexpectedly to test him, the scheduled test wasn’t for another hour! So tired that even though great technology like the CGM and MYSentry are available that we aren’t privy to these lifesaving devices because the insurance deems them not necessary. If one of these insurance folks had to watch their son suffer a seizure from a hypo knowing there was absolutely nothing they could do about it, and in fact the seizure seemed to play out in slow motion all the while your mind is thinking you are watching him die right there in front of you, then maybe, just maybe they would deem these devices necessary. Perhaps if they knew what it was like to go on broken sleep for what seems like forever, they might think otherwise. I’m so tired of blood! I’m so tired of pain, not just the physical pain that Clifford has to endure but the emotional pain it puts on the whole family. I’m so tired of being a freaking calculator that my head hurts. I’m so tired of doing the job of a pancreas that was defeated when his immune system came throwing down. I’m so tired of hearing there will be a cure in 10 years…From what I’ve heard many other D mom’s before me have heard this same thing, find the cure already damnit, and move on from believing Diabetes is your pot of gold, I think people’s lives are much more important than any amount of money in the world.  I’m overall just so tired of the whole damn thing.

But even though I’m tired I still move forward. I still work to fight as hard as I can to make sure he stays alive DAILY! I don’t like to think of it that way, but when you’re told you actually save your child’s life DAILY, that’s huge and at the same time sad. No matter how tired I am its all worth it to see him smiling and laughing and enjoying life! It’s all worth it seeing him enjoy being just a “kid” not a kid with diabetes. So even though I’m so tired of you diabetes, I will continue to fight you!

Oh you could if there was no other choice…

There are days that I go to sleep hoping the nightmare of diabetes was just that a nightmare we’ve been stuck in and when I awake it will all be a distant thought. However that’s not happening. Part of me still “hopes” on the days the Clifford’s blood glucose #s seem perfect that his pancreas jumpstarted itself back to life. Yeah, I know this isn’t true and don’t live in dream land thinking it is, like I said “hopes”. I don’t post daily on here because honestly I get tired of talking about diabetes day in and day out. Is it selfish? I don’t think so. We live diabetes 24/7 and I get worn out, exhausted, thrown under the bus from everything it brings forth that at the end of the day I DON’T want to talk about it. My mind is already thinking about it, I can’t stop that, believe me I try. I just can’t shut it off. I’m always thinking carbs, units of insulin, how much he got, how much that’s going to bring him down, is he going to drop overnight.

 

Oh and then there’s the guilt. Somehow the other night I completely shut OFF my cellphone with the alarm in the middle of my sleep. The alarm didn’t go off, I didn’t wake up until 7am…. Somehow my subconscious was telling me to sleep. But it didn’t erase the guilt in the morning until I tested him and found out he was good, and more importantly ALIVE! I’m only human. I try as hard as I possibly can to get up and check as much as I can but I do need to recharge my batteries. And I detest diabetes for making me feel so guilty about sleeping.

 

In the end all you have is the above.. STRENGTH…. You really don’t know how strong you are until it’s the only choice you have left. I’ve been sleep deprived for so long now that I don’t know any different. I still wake up in the middle of the night even if no ones awake or it isn’t time to test. My body just won’t let me sleep. So if you ever get the remarks of “Oh I couldn’t do that, or I don’t know how you do it”. Just respond, you would be surprised with what you could do when you had no other choice.

Illness and Diabetes

 

I know I have discussed this before many times, but an illness of any kind and diabetes is a huge pain in the rear end. Clifford’s blood glucose numbers have been running higher the last 2 to 3 days 200s, 300s, 400s, no ketones, no site issues. It even was to the point he was corrected once at 12:30 then again at almost 4am, and he still woke up at 206! Not to mention after getting 4.3 units at breakfast (which is a high total for him) he was 421 2hrs after, no ketones, site was good. Corrected him because there was no way I was sending him to school with that #. I should mention the correction took place in the doctor’s office waiting room. Turns out Chad and I were right in that he has a sinus infection and probably is the culprit behind all these crazy highs. So antibiotic it is, which may make him run high too, there is no winning with an illness and D I tell you.

WEGO Day #22: Things we forget

Today’s prompt is the “Things we forget” : write yourself a reminder. It can be in the form of an online post – or a picture of an actual Post-It like the ones from the website.
Funny that this was today’s prompt because here is my computer from when I woke up this morning.

It might be a bit difficult to read but it is a post it that says “Call in OneTouch Strips tomorrow”. Even though I posted about how I keep track of prescriptions here , I had to give myself a reminder because before I went to bed I noticed the date of the last refill of OneTouch strips, it was 3/21/12, that mean’s it’s time to refill again. So I provided myself with a little bit of a reminder that when I sat down at the laptop in the morning I would see it.
So for my HAWMC Day 22 post here is my little reminder. I really haven’t been keeping up with my HAWMC posts like I should have, but from here on out I pledge to keep up with them all.

Every once in awhile…..

It’s nice to hear that your doing a good job! Especially from your child’s CDE (Certified diabetic educator). It feels like a nice pat on the back for a job well done.
The one big benefit to those of you not pumping yet with our pump is that we can upload Clifford’s numbers to Carelink. The beauty of this is now instead of calling or emailing his CDE when I notice trends, I just upload and she already has the username and password to log on and view them. It’s a beautiful thing really and one reason why we chose to go with Medtronic. I also have to say Medtronic’s customer service is absolutely wonderful! When we had site issues with a few sites a few weeks back, I called and let them know. They shipped out a new box the next day to replace the box that we were not having luck with. Today it was time to put in our first “official” reorder of pump supplies. Called and completed in less than 5 minutes. After that a few hours later I received a call from a Medtronic Rep informing me they were shipping it out today and I’ll have them by the 25th! And that she had already went and scheduled his reorder for next month and will give me a call ahead of time to let me know when it ships. <3 this. Much easier on me. I don’t know about you but I have a little “method” in place of when it’s time to reorder supplies and prescriptions. I refer to it as the prescription board.

But back to my topic, every once in awhile it’s nice to hear about a job well done. The CDE was telling me I did a good job at handling the issue we had here . Was a good compliment for me and set the tone of my day!

The Pump Life

Clifford has been officially pumping “insulin” for 2 days shy of a month now. I’m going to throw it out there for those of you that are not pumping yet. I love it!  So much easier all around, and he is saved from 6 injections a day. Now the above picture is NOT something one wants to see at a random check at 11:30pm. He’s had some high’s but really nothing much over 300 minus a bad site when he was 500. So this told me he didn’t get any of that 1.5 units that were bolused at bedtime. I couldn’t imagine what it would have been if I didn’t check until scheduled check at 12:30.

Long story short, it was a party in Clifford’s room at 11:30 pm with a 3 unit correction with syringe, blood, ketones, water, insulin, site change you name it we had it. After we pulled the site I reviewed it and it looked beautiful. This told me maybe it was the insulin (which mind you I just gave 3 units with for a correction via syringe) to be on the safe side I got a new bottle to fill the reservoir with. When I rechecked him in 1 hour it was clear to me it was the insulin, he was 553, he in fact went up but ketones went down to 0.6 (thank god). I remember Clifford asking me at 11:30 (Does this mean I will have to miss school), Told him no because by morning he should be all better, if not he’d be in the hospital. (just the life with ketones and T1D). Long story short after a long night of checks every 1 to 2 hrs he woke up to eat breakfast at 150 with 0.0 ketones. So to me that was a victory as he’s off to school feeling much better.
Don’t let this horror story scare you because we’ve only had two bad site issues since starting, and a couple not wanting to stick, but the majority of the time it’s been fabulous. In telling the journey with the pump you have the bad with the good, and it’s good to tell it all to help everyone be prepared. Now if you don’t mind I’m off to get some more caffeine to keep my eyeballs open.