It's been a while... I usually try to update my blog once a week, but have not been too good in that sense lately. I missed blog week last week as well. So, what's my excuse? No excuses. Basically life and Type 1 gaming. So, it's time to get back on track with a new post... After supper the other night Adele wanted to remove her Continuous Glucose Monitor (CGM) sensor. It was 5 days old, which means that we could still get another day out of it. And it was working really, really good. The numbers were really close to her meter readings. But it had started to come out after swimming so I had to do a slight "patch job" with an Opsite dressing (thin "sticker" that we use to keep CGM sensors and pump infusion sets from pullling out). This patch job made the skin not breathe very well and it was getting quite itchy. I told her to keep it on since it was working so well. She then told me "You don't know what it's like to have Diabetes and to have this sensor and infusion set stuck to your skin all of the time". Crap, it's so true. I don't know. I don't even have a clue what it's feels like to be in Adele's shoes.
A few hours later, after I finished my bike ride, Adele told me that she had removed her CGM sensor, that she couldn't stand it anymore, it was just too itchy. She felt like she needed to justify that she took the sensor out. When I was tucking her into bed, I told her that I wasn't mad at her because she had removed it and that she was right, I don't have a clue what it's like to have Type 1. Then she challenged me to insert and wear a CGM sensor for 6 days to see what it feels like, to experience that "itchy" feeling. I told her that I would if I could, but that sensors were too expensive to "waste" one. Then it hit me. We had a few expired sensors left from the last box. I told her that next time that she inserted a sensor that I would insert one as well. Mine would not work without a transmitter or a pump to display the numbers, but at least I would somewhat know what it feels like to have a small wire splintered into my skin as well as an Opsite dressing covering it all and holding it in place.
As a bike racer, I remember being frustrated a few years back after repeatedly being beaten by a fellow competitor. He was my age, also had a full-time job, family and no matter how hard I trained, I just couldn't seem to beat him. I told myself that he was just genetically gifted, a freak of nature really and that's why I couldn't keep up with him no matter what I did. I told myself that he just had better genes. But then, a friend told me that the reason why I couldn't beat him wasn't that he was physically stronger than me due to genetics, but rather that he could suffer more than I could. Hmmmm... At first I thought that was absurd, that it couldn't be that simple. "I can suffer with the best of them" is what I thought. But maybe he was right. Maybe I was giving up unconsciously to avoid feeling that extra level of pain and discomfort? Maybe I was losing because I was just too 'soft'?
My first sensor insertion seems to support this 'softness' theory and strongly suggests that I really am a wuss, a coward, a big chicken and a wimp. Looking at that long needle made me want to back out of my commitement, but I knew that once I told Adele that I was going to do it that there was no backing out. I can't deny that I was afraid. I used the skin numbing emla cream. Luckily this wasn't against the rules since Adele also insists on using it for her sensor insertions also. I inserted her sensor and she pushed the button to insert mine. I was trying to be as brave as her, but deep inside I braced myself for the pain. The needle seemed huge (it actually is huge!). Luckily with the numbed skin I didn't really feel a thing during the insertion. It certainly didn't hurt. We secured everything in place with the Opsite dressings. Adele started CGMing and I started pretending to CGM. The next few days, Adele kept asking me how my sensor was holding up and I kept an eye on hers. After 4 days, hers started to give bad readings, we tried to recalibrate to make it work, but with no luck after numerous attempts we decided that Adele could remove it. I wanted to try to keep mine in for the full 6 days, but as soon as Adele removed hers, she also pulled mine off. I guess she wanted to give me the same type of relief that she had just experienced by taking hers off and finally letting the skin breath and begin to heal.
I'm happy to have done this and hopefully it helped make Adele feel supported and that I was at least trying to understand what it's like to be in her shoes. So many times have I wished that I could transfer Diabetes onto myself instead of her. It made me feel a bit closer to her every time I'd notice the sensor just above my belt. I forgot about it many times when I was out and about. I even almost accidentally tore it off while showering, but it was still always there. And it started to itch after a day. I could usually get busy doing something else to help me forget about the itchyness, but I could still feel this thing that didn't really belong and that my body didn't really like being there. The skin even remained itchy and irritated 3 or 4 days after the sensor was removed. It also made me feel bad in that this isn't an experiment for Adele, it's her reality. Yeah, sure we could get her off of the pump / CGM and go back to multiple daily injections, but that option doesn't seem much more appealing. As helpful as all of these new technologies are in regards to Type 1 gaming, they are in NO WAY close to a cure. They keep Type 1 gamers alive... and make pharmaceutical companies richer and richer (sorry, I just had to add that last part).
So now when I see the wheel in front of me pulling away during a bike race when my legs and whole body are screaming in pain, I think of Adele and of all that she must go through each and every day and I suck it up and pedal a little harder. I choose to push deeper into the pain. At least I have that choice...
8 comments:
That was a great experiment Dad. I can see why she hugs you so hard in the picture below. You're an awesome dad!
Emma's on MDI, and I did something similar with Emma. When the Ping came to Canada, I wanted to see it and the guy from Animas inserted a set into me and gave me a few boluses of saline and then I chose to keep the set including the tubing in me for the 3 days. When I got home, Emma wanted one too, so we inserted one into her too. No creams! Every once in awhile, we would hook the tube ending together. For that brief moment, it was like we were hooked together, going through the same thing together. Like something off of Star Trek where the tubing would glow and we were in some sort of mind meld! lol She enjoyed it and was sad to take it out at the end.
You got me. What a great perspective...am I as strong as my type 1's? NOPE, I would be a TOTAL wimp. Just thinking about inserting the cgm gives me the shakes. Our kids are amazing! I'll never truely know what they go through. I can imagine, but it isn't the same.
This really moved me, I have thought about what it must REALLY feel like for my girls to have type 1 diabetes...in reality I will never fully understand what it is like because I am the one administering the shots and finger pokes all the time, not receiving them.
I hate that our kids have to go through this everyday, the burden is huge. They are so strong and so inspiring!
I love that you put that CGM on and endured it with her, that's amazing!
i'm sure that experiment meant a lot, and definitely earns you points.
on a practical level, what are you using to prep her skin for the CGMs sensor? I use a Dexcom, but also find their adhesive to be irritable if the skin isn't prepped. I use SkinTac wipes before I insert the sensor, and routinely wear sensors for 14+ days with little/no discomfort (i have my whole install routine here: http://bit.ly/cJ8Sk1). People on other forums with very sensitive skin use Skin Prep (I believe same maker as Flexifix) and others have suggested putting down a layer of Flexifix first (with a hole cut out) as its adhesive is less of an irritant, so that the sensor is essentially sandwiched between two layers of Flexifix.
That is awesome. I'll admit it, it took me months to even test my BG and I can't deny that a few beers helped give me the courage. I have a lot of respect for our kids and I look up to them for their strength and composure.
That's awesome! I'm sure she loved that! I should suggest this to my hubbie and see what he says. I tested his BG for the first time this year (!) last night and he actually said "Ouch." and jumped back when the pricker "attacked" his finger.
It's crazy but us gamers don't have a choice... we have to grow courage. I very often hesitate and whimper and take a deep breath and then try again to insert the sensor... then chicken out and start the whole process again... hesitage and whimper etc.
Adele is a brave one!
Great job, Mike. I believe our children find a sense of security when we, as parents, do stuff like this.
I've worn just about every site I could get my hands on, including a pod. When we were trying the Navigator, I wore that too. When we were in the hospital after dx, I remember my husband using every clicker option on every setting, and pricking each of his calloused fingers until he found which one used the smallest depth with the least amount of discomfort, and still drew blood.
Enjoy that beautiful daughter of yours. You're doing a great job!
I agree with you that I wish I could trade places with my daughter.
I've often wondered what it would feel like to actually wear a pod for 3 days. I may have to find a way to do that (should have asked to do it during the saline trial).
Once in a while I will check my own blood sugar to teach someone else how to do it and I am amazed at how much it really does hurt to lance one's finger. Ouch! And these kids do it multiple times a day.
I always say I think T1 kids handle this far better than most adults would.
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