“One. Two. Three. Four. Five. Six” SNAP! The infusion set is inserted into my son’s stomach. He writhes in pain, rubbing his stomach. His eyes are closed as he tries to compose himself.
I usually tell him to “suck it up!” I tease him about being a wimp and he gives me a lecture on the varying levels of pain a site causes depending on location and insertion method. This time I said nothing. I paused for a minute and watched him in awe.
We will soon have been at this game called diabetes for thirteen years. That is 87% of his life spent living with diabetes. As of today that is at least 37,776 times that he has had his fingers lanced to make them bleed so that I could know his blood glucose level or ketone level in his blood. He has been poked by a syringe to inject life saving insulin into his body a minimum of 5500 times. He has been stabbed by an insulin infusion set injector at least 1300 times. I don’t think he has ever cried. I don’t remember ever having to chase him to lance or inject him.
He puts off changing his sites. He forgets to test. He will do anything rather than endure another injection or have blood work done. I will give him a hard time. I will tell him to deal with it. Why? Because in my head, I still see that lifeless little boy that I willed to live all those years ago. I vividly remember what life without insulin looked like. There is no option but this one.
Despite that hard line; despite “knowing” that there is no alternative, last night I allowed myself a moment to recognize how brave and strong he really is. I HATE lancing my finger. I squirm and cringe. I jump and do anything rather than voluntarily stab myself. I hate getting blood work done and will not watch and the needle enters my veins. The needle that I stuck into my son’s stomach is bigger and longer than most needles I have experienced. I had an IV put in my hand about a year ago and after the nurse was done messing about, turning it, and twisting, I was almost sick to my stomach and fought to stay upright.
If I had to have infusion sets stuck in me on a regular basis, I would be an Emla addict and I would still cringe and squirm. My son used Emla for a few years, but then he decided not to bother with it any more.
I still believe that injections, insertions and lancing is a FAR better alternative to life without insulin but I also remain amazed at the pain that a person with diabetes goes through to stay alive on a daily basis. I am amazed at all that my son has gone through and he still simply takes it all in stride each day.
This week I was going to write about Diabetes Art Day. I actually I planned to participate until I took a look at the amazing creative efforts of people and felt that my stick men would just not cut it (even if I made them out of test strips!) . That was the plan but life seems to change plans.
I was speaking to a friend the other day. His daughter in-law and grand-daughter were returning from the funeral of a young man. I had heard that a friend of this woman’s son had passed away and I felt bad for those who loved him but that was my last thought…until this conversation. That is when I learned a bit more about how he died.
This young man, someones baby, someones son, was just 20 years old. He had Type 1 diabetes. He was active and involved in sports. He went low while playing sports, passed out, seized and never regained consciousness.
My heart stop. I had to remind myself to breathe. My friend said that he really hadn’t wanted to tell me about a diabetes death of a young man but he felt that I would find out anyway. I somehow managed to continue the conversation noting that I sadly am well aware of how deadly diabetes is. We continued to talk and educated. He understood much more about my fears after years of spending time with myself and my son. He knew that this could be my child and that my fears were justified.
I don’t know this young man’s family. I don’t know about his life. I know that he is only just older than my oldest son. I know that his family is now living my worst nightmare. I know that this isn’t right. I know that young children are not to die because of diabetes. It just should not be.
Parents worry about their sons drinking and driving. We worry about them trying drugs. We worry about them getting into bar fights, having an accident at work, or driving too fast. I know…I worry but I don’t obsess.
Last night, my internal alarm went off at 2 am. I rolled over, looked at the clock and before I could groan about how unfair it was that I have been getting out of bed throughout the night for all of these years, I was up. As I walked to my son’s room, I said “Thank you.” I repeated those words as I searched for his meter, strips and lancing device. I said thank you again, when I saw a high reading and reached for his pump to correct. Thank you. Thank you. Thank you.
I realized that as I was standing there testing, another family was waking with no one to test. They were wishing that they were me. They prayed to have their time back to hold their son, to watch him sleep, to be able to test him and see him wake for one more morning.
I headed back to my bed grateful for all that is. Thank you. Thank you. Thank you.
Over the holidays, my boys and I were sitting at our kitchen table enjoying an after supper conversation. My youngest son happened to look at a drug store receipt on the table and said “$160 for a month of test strips? That’s crazy!”
I quickly explained that sadly that did not cover a month’s worth of testing. I also reminded him that there was still the cost of insulin and pump supplies to add to that monthly diabetes care bill.
He was completely incensed. He was adamant that he would NOT be spending that kind of money on his diabetes care when he was older. This was insane by his calculation. No one should have to pay such crazy amounts to stay alive.
He decided that he would have to seriously cut down his testing when he was forced to cover his own supply costs. He informed me that when we went to diabetes events and he filled out cards, they always asked if he tested only a few times per week. He had to state that he was the child of an obsessive tester and tested closer to 10 times per day. My young son felt that these cards(geared to people with Type 2 diabetes) justified him not testing in his adult years.
I groaned and tried to explain to him that a lack of testing was not an option to consider. I had invested in a Disability Savings Plan for him and reminded him that it would give him some money towards his diabetes supplies when he was older. I also encouraged him to keep contributing and taking advantage of the free government money.
This did nothing to pacify him. He remained horrified at the cost of his care. He decided that it was the job of the government to cover his costs. If they did not pay for his supplies, he would die. It was simple.
I wish it was that simple. I wished that governments actually cared. His throught processes scare me at times. I pray that he does have good coverage when he gets older…and more importantly that he uses the tools available to him to keep himself healthy.
“You were really high last night. Did you forget to bolus something?”
“Mom, you know how I eat in my sleep?”
“Yes, I know that if I feed you, that you will chew without waking. What about it?”
“Well, I think that is why I was high last night! I am pretty sure that while I have been sleeping that Sweedums has been feeding me. You know, she is getting me a sandwich and making me eat it. She has probably been force feeding my some of my Christmas chocolate too!”
Oh my! Where does he come up with this stuff? “Perhaps if she feels the need to feed you at night, you could remind her to bolus as well?”
It may be a new year but somethings never change!
|The boy and his dog, Sweedums…she does have a guilty look!
Last night I got an email from fellow Diabetes Advocate Mike Durbin asking everyone to take part and/or spread the word about “Diabetes Blessings Week“.
With the American Thanksgiving holiday coming up, I have seen many friends noting the things that they are grateful for throughout the month of November. Gratitude is a great practice and something that I promote in my Life Coaching practice. It is also something that I try to incorporate into my own life.
Mike asked that we blog about a few of the blessings that diabetes has brought into our lives. Ideally you would look at one blessing per day for the week of November 19-25th. Since I am a day late in getting started, I will try to come up with two for my first day…
Actually the top two are simple and intertwined. My diabetes family and CWD conferences.
Its has been almost twelve years since I “found” my family. I had just gotten onto the Internet for the first time. I searched “parents of children with diabetes”. I was instantly sent to a website and a parents email list. There I posted a question about a battle I had been having with my toddler–trying to convince him to eat after giving his insulin. We had been experiencing tears, vomiting, and terrifying lows. I was at my wits end.
Within seconds I received two emails back from parents telling me what I already knew but for some reason could not do. They told me not to give him insulin until after he ate. It was so simple but until another parent told me, I could not grasp NOT giving my son insulin.
That was just the beginning. Over the years, these face-less friends became my support. They were there through the good times and the bad. They understood the bittersweet feeling of having your four year old being able to lance his own finger and draw blood. They understood the exhausting nights and the drag your butt days. They were there to pull me out when I just wanted to curl up and hide under a rock for awhile. They were there through diabetes fights, political battles and personal struggles. No matter what was going on, there was always a strong shoulder to cry on and firm hand to push me forward.
|Beach party with our amazing Friends for Life!
As the years went by, I was able to share the wisdom taught to me with others. I was also able to meet some of my nearest and dearest friends in person. I travelled to visit some at a beach party. I later travelled to visit others at what has become the foremost diabetes conference in North America–CWD’s Friends For Life. It is the one place on earth where friends connect and friendships truly are made for life.
|Just a few of the amazing people that I am blessed to call “friends”
Imagine how blessed I felt when I was asked to not just attend a FFL conference but be a part of the staff? I was honored I was humbled. Each year that I attend, I have to pinch myself. I am surrounded by the most amazing people in the diabetes world. Parents, doctors, nurses, educators and advocates…and me. It truly is the high point of my year when I am there!
Diabetes, despite its brutal nature, has brought many blessings with it. The two that make each day a little easier are definitely the incredible friendships I have made and the gathering of those friends at FFL Conferences each year.
|More of my wonderful friends!
Lately diabetes has been taking a backseat in my life. I have been busy with a lot of major changes and dealing with other stressors in my life. I have left the diabetes care to my 15 year old. Everyone says that its his disease anyway. I see the dead test strips throughout the house. I see him bolus and after a lot of nagging, he does change his infusion sets at least once a week.
Yes, I have been frustrated by the site change frequency. I have also taken time away from focusing on my own issues to give him the regular…do you want lumps and bumps all over your body lecture. To which I get the usual response of “If I was a UFC fighter, I would have all of those lumps and when someone punched me they would squirt blood.” Yes, I then hit my head against the wall and ask “why me?”
I decided that it was time for things to get back to normal…or at least as normal as they ever are in our world. I asked my son for his meter so I could see how things have been going in my virtual absence. I knew how the nights were going. I was testing them and had made some changes but what about the rest of the time?
Well, we are left to wonder about the rest of the time because there are serious lapses in testing! I wanted to scream. I wanted to cry. Was he ever going to learn? I asked him what exactly we were going to do about this. Of course he had no answers and neither did I. Did I mention that I wanted to cry?
I will attempt to go back to the hawk-eyed mother I have occasionally been in the past. I will check his meter more often. I will nag and adjust. I will pray that he really does “get it” one day and take some solace in the fact that he does bolus for his food…well most of it anyway.
Give me strength….
I could use some toothpicks to hold up my eyelids today. First I tossed and turned in bed. I finally fell asleep after one this morning and woke in a panic at 4am. I wanted to test my son a little earlier than that but it was what it was.
I dragged myself out of bed. Despite tweaks to his basal rate he was still running high. I wondered if it was a carb counting error because he simply eyeballs his cereal rather than weighing it. Yes, he does normally get that right but still it bugs the control freak in me.
I input the correction into his pump and waited. Every night for the past two nights, the pump has complained of a blockage part way through the correction. Yes, that should have been a warning to me. I should have changed the site on one of those two times but his readings were pretty good at all other times.
Foolishly, I mentioned the issue to my son and suggested that he may want to do a site change. He told me that it was all in my head. The site was fine. The reason for the alarm was that he was sleeping on his stomach when the correction was deliverying and that was causing the occlusion alarm.
Why did that make sense to me? I have no idea. I guess because its was a large dose of insulin versus the normal nightly basal delivery. For some reason I was okay with his reasoning…until the third time!
Last night I once again waited. Once again I was not to be disappointed. His pump swore that there was still a problem. I gave up. A site change it was. Four in the morning, weary but out came the supplies and up popped my son in his bed wondering what I was doing! I was relieving myself of further anxiety and stress. The site was moving!
The correction worked perfectly in the new location and he swears that all is fine this morning. I am still not sure why I bothered to listen to his logic the first time around but live and learn I guess!
“Your correction didn’t work.”
“What do you mean? Did you fix it?”
My son looked at me a little strange. “There must have been a kink in the tubing or something. The correction didn’t work. I fixed it when I got up.”
It was now my turn to be perplexed. “Why didn’t you just fix it last night when I corrected you?” For some reason I feared an occlusion alarm last night but really didn’t worry because my son was awake and would be able to deal with it.
“Why would I fix it?” he asked. “I was asleep.”
I told him that he was not asleep. He jumped up in his bed when I took his finger to test and then sat there staring at me. When I did test him I asked him if he felt high. He said no so I retested to make sure that the meter was accurate. I also asked him if he had been high before he went to bed but he didn’t think he had remembered to do that last test.
My son continued to look at me like I was insane. “I did not wake up last night. I don’t remember you coming in to test me. I never talked to you after you went to bed until now.”
The look on my son’s face when he jumped up in his bed did make me wonder if he was low or a little bit out of it. My boys do talk in their sleep and have been known to climb walls while chasing someone in their dreams so the fact that my youngest failed to remember any of our conversation last night is not overly concerning. The fact that he was high after being lower the night before is more likely attributed to the incredible amount of restaurant pizza than it is to a rebound. All in all, its just another night in our slightly odd life with diabetes!
In honor of Wordless Wednesday, meet Phil the SUPER COOL Animas Penguin. He was way too cute not to bring home from this summer’s FFL Canada Conference!
(And his belly is made to practice inserting infusion sets)