When we decided to get Rocco his insulin pump, Medtronic told Michael and I we could wear a pump filled with saline (rather than insulin) for a week. They encouraged parents to experience what their children were going through. I knew I would eventually want to do this, but I was already overwhelmed with learning how to help this little guy manage his pump therapy.
I couldn't conceive of programming numbers, checking blood sugars and counting carbs for myself, too! So I put it off.
I thought about it often since then, but it never seemed like a good day to "get diabetes". Lol! Is it ever? So I wimped out.
National Diabetes Awareness Month was a perfect reason to make myself do it. I would become aware of diabetes in a new way. I would bite the proverbial bullet and hook myself up. I promised Rocco that I would wear his old pump when he got his new one. He was thrilled. I explained that I wanted to see how it felt and to experience what he did every day.
Well, let's just say I learned a lot!
On Saturday, at my mom's house Rocco hooked me up.
It did hurt a little going in. It felt like someone flicked me, but not really hard. I was glad I didn't jump or scream when he put the pump port in my rear. I heard that a mom did that once and then the kid wouldn't wear his new pump after that. Ugh!
I put it in one of Rocco's old pump packs and we were on our way.
When I got the boys home and up to bed, I realized I was starving. I went to grab some left over pizza and stopped myself. I realized I couldn't just warm it up and chow down, like I was used to doing. I had to check my blood sugar (I was 72) and then give myself saline for it.
I hate to admit it but I was actually nervous about checking myself. I have done it many times before, but between you and I, I don't like to do it. Rocco is a trooper, doesn't even blink when I check his blood sugar. I admire that about him. Even though he may complain because I make him stop what he is doing, he doesn't care about the finger poke. But that's the part I hate the most.
I also thought about how many times I told Rocco to stop what he was doing to come and get checked. It happens every day, a couple of times a day. I sometimes get annoyed at him if he rolls his eyes or ignores my request. Now I can understand his side of the hand/story. I’ve promised myself to go to him more and not make him always come to me. Getting checked stinks enough. Maybe I can make it stink a little less.
A couple of hours after the pizza, I grabbed a mini Hershey bar and realized I had to check myself again. Ugh! I thought about all the people with diabetes that had to do this many times a day, every single day. For now, forever. I especially empathized that they often must do this even while feeling weird because they are high or low. Wow!
Of course, I do these same tasks for Rocco every single day also but when it was for me, it was much more annoying. When it was for me, I could choose to do things. I could choose not to eat and I could choose not to check. Taking care of Rocco seems easier because, I guess, his health seems more important. In the past five years, I never chose not to feed him or not to check him. But even within the first couple of hours, I was already trying to think of ways "around diabetes" for me. I already thought it was annoying except I had no right to feel that way only after three hours. It made me get that feeling in my belly, that drive, to cure this annoying disease even more strongly. Now, I wanted to help cure it not only for Rocco but for everyone else who had no way out.
I went to sleep and realized sleeping with the pump was kind of tough. I am a stomach sleeper so I had to maneuver the pump between my stomach and my ribs. I was restless throughout the night, trying to get comfortable.
I woke up and was eager to experience my son's life for the day. Except when I went to the bathroom I accidentally ripped off the port. Darn it!
I kind of laughed and once again appreciated Rocco. I thought of every time he was in a wet bathing suit, in diapers, in Pull -ups or learning how to dress himself - he had only ripped his off a handful of times. Less than 10. He has worn his pump every day for the past five years. I sheepishly admitted this to him and he just laughed and rolled his eyes. It made him feel appreciated and powerful over me! I was glad for that. He also took a moment to explain exactly how he pulls out his pants first, then pulls them up. He said I needed to learn that part. It was fun for us both to have him finally be the expert at something that he could teach me.
So, even though we were already running late, we tried it again. I wondered how many people with diabetes were late for work or a meeting due to a port change. I also wondered how many flights, games or appointments were missed. I thought about skipping it and doing it later but suddenly realized, if I was truly going to appreciate what Rocco will have to go through, I had to do it right then. It's not like he could ever skip it. This time I did it in my leg with numbing cream. We use numbing cream for every one of Rocco's port changes. Which we change about every three days. This is what the doctor recommends. The cream numbs the skin so when the needle goes in, it doesn't hurt as bad. I was excited when Rocco put the port in and I didn't feel anything this time. No hard flick for me!
Rocco wears the port on his bottom. He is afraid to put it on his leg, arm or belly. This is a problem because if you wear it in the same area for a long time, you can build up scar tissue. Too much scar tissue and the insulin can not break through the scar tissue and get to him. Since he has been doing this since he was two, I fear that he is already building up too much scar tissue. As for now, he has the rest of his life to wear his pump. I want him to switch his port site to his arm, leg or belly and give his bottom a rest. However, he is scared and won't do it. So, I hoped seeing me put it in my leg might inspire him to try.
This time, I also used the clip to wear the pump instead of the pump pack. So did Rocco. At night, however, this is a problem because the pump is usually too heavy for his PJs. So, I was glad he got used to sleeping with Lenny. He can put the pump inside of Lenny and snuggle him throughout the night. Although he still likes his pump pack, he has the option to wear the pump pack or the clip. It's just always good to have options.
One day when we went out to eat at Taco Bell, I checked myself. I was 75. Then we checked Rocco, he was 84. We ate the same kind of food so we needed the same amount of insulin and saline. Rocco got really happy needing the exact same amount. It was cute to see him excited about experiencing the same number.
I did find out that I was way more conscious eater than I usually am. I would go to grab a snack (& let's just say it wasn't an apple :0)), not feel like checking my blood sugar and put it down. Kind of like Seinfeld's "sponge worthy" show. I had to decide if each snack was "poke worthy".
All in all, I realized a couple of things:
1) Finger pokes hurt when you are not used to them. After a little while, I got used to them.
2) Wearing the pump at night is difficult when you are it used to it. After a while, I got used to that too.
3) Wearing the port in my leg bothered me less than in my bottom.
4) Being disciplined at diabetes is hard. I kept appreciating every single person that had to do this every single day (6-12 times a day). It is not easy. I am impressed and in awe that they actually do so well with it.
5) Thinking of Rocco doing all of this on his own for the rest of his life is even more overwhelming now than it was before I tried to experience having Type 1 diabetes. I think doing this may have helped him but if I am being honest, I am not sure it was good for me.
6) wearing the pump did make me appreciate everyone dealing with diabetes a ton more than I already had! I really don't know how you do it. My hats off to you!
If you have a moment, wold you mind voting for us? It takes four seconds and you don't have to sign up for anything. If you have neen voting, thank you so much for taking your time to help me! I really appreciate it!
This how an insulin pump works.
These awesome parents did this!