Participants Point a View
Week 20: Participants Point of View by Rae (@NJRae)
First I want to thank the folks involved with Diabetes Social Media Advocacy for creating the weekly Tweetchats on Twitter. It’s helped me realize it’s time for me to throw my hat back in the ring with regards to Diabetes advocacy.
I do not have diabetes but I am married to man that does and am the mother of three boys, two of whom have the big D. I recently read someone describe people in a similar position as mine as a Type 3 and thought it was truly fitting. We live with diabetes every day also. It’s made us laugh and cry, introduced us to fabulous people, educated us and made us question. We’ve called it vile names, fought it and fought for our family members with it. When someone you love has diabetes it’s in your life everyday and becomes a part of you.
During a recent DSMA chat we were told of a post on the Children With Diabetes website regarding legislation in Washington state that may limit the number of blood glucose testing strips available to children ages 0-12 to one a day and asked what our thoughts were on that.
WHAT?!? ARE THEY SERIOUS?
My immediate thought was that the government needs to keep their hands the heck out of a person’s personal health issues. There SHOULD BE only three people making treatment decisions for a child- their doctor, parent and they themselves. My second thought went to my sons, Josh and Chris, and how such an action could impact them if the madness was to spread to our neck of the woods.
Josh was diagnosed with Type 1 diabetes when he was two years old. He wasn’t acting like himself, usually a sunny energetic little boy, within a week he became a terrible two. He seemed tired all the time, was whiny, CRANKY and THRISTY. First I attributed this to his having recently weaned himself from breastfeeding but as the week progressed my Mom-sense started tingling and I thought something’s really wrong. I made an appointment with his pediatrician for the next day. He never made it to the doctors, shortly before dawn he started vomiting and we were told to take him immediately to Children’s Hospital. His blood was tested and it was determined he has Type 1 diabetes.
We spent the next week in the hospital getting his blood sugar level down and receiving training on how to fight diabetes. I know you would think we would already know what to do since Dad also has Type 1 but at the time my husband wasn’t in a good place regarding how he treats his battle with diabetes. As it turned out I was about to discover exactly how much he was NOT doing, but that’s another post.
From the beginning we were told to check Josh’s blood sugar AT LEAST six times a day because tighter control leads to a healthier person. A two year old has such tiny hands and little fingers. The first time I checked his blood sugar he turned to me and said, “Mommy, you hurt me.” It felt like someone had both crushed and stabbed my heart. This was going to be hard.
After a week that felt like a month because of all I learned in such a short period of time we packed up our bags and headed home. The car ride home is the perfect example of one of the many reasons why Washington state limiting access to diabetic supplies of any type is just plain WRONG!
Josh had his first low blood sugar on the car ride home. He went from chatting away and kicking the back of the seat to OUT LIKE A LIGHT! We had checked his blood sugar just before leaving the hospital (Test Strip1) but the nurse’s parting word were, “You’ll do fine. Just remember when in doubt test.”
So I tested. (Test Strip 2) His blood sugar was 33. I got him to drink a juice box and eat some peanut butter crackers and then waited the longest twenty minutes of my life to retest him as they told us to do in training. (Test Strip 3) Retest, blood sugar 45, more juice and crackers, another wait. (Test Strip 4) His blood sugar is finally 100. According to the state of Washington I’ve just used four days worth of strips.
When Josh was little he would just go to sleep when his blood sugar was too low and if he was already asleep he didn’t wake up so I test his blood sugar regularly and every night at 2:30am. I have also become a really light sleeper because sometimes I hear him chewing in his sleep, usually on his fingers. I get up, test him and his blood sugar is low.
Over the years we have made many changes in Josh’s treatment plan with his diabetes team’s advice. They have never ONCE told us to only check his blood sugar once a day or that we are testing too much. In fact, I believe, if I told them I was only going to check his blood sugar once a day they would report me to child protective services for neglect, and rightly so. If I could be charged with neglect by one state for only testing my child’s blood sugar once a day then how can another state possibly justify, and try to pass into law, testing diabetic children in their state once a day.
Nine years later my son still has very little awareness or feeling when his blood sugar is low or high, so we test. Testing gives him the confidence that his blood sugar is at a safe level so he can play with his friends, ride his bike, play soccer, go hiking or just run around on the playground. Diabetes is hard enough to deal with sometimes without it taking that little sense of freedom he has because he knows he doesn’t have to “guess” or “feel” what his blood sugar is. He can take out his meter, TEST and KNOW! Mandating once a day testing could be a death sentence. It is irresponsible and intrusive. Diabetes is hard enough on a family and the state of Washington has NO RIGHT to make it harder.