I am dead tired…and feeling guilty

I am worn out, dragged out, dead tired…after just two nights.

I am out of practice.

I want a CGM.

I want a cure.

I feel guilty. I can’t wait to get my sleep back again.

My son came to visit for a few days.  It was the best Easter gift…having both of my boys here with my for Easter dinner! I was over the moon.

Diabetes had to tag along for the ride.  It could have stayed behind.  It played better than it has on some visits however.

I was pleasantly surprised when I got up to test my youngest son on the first night.  He was a perfect 5 (90).  I didn’t sleep. He was perfect. Exactly in range.  What was next? Would he rise? Would he go low? I didn’t sleep. I rested now and then. I checked.  He dropped a bit. Not enough to worry about. I tried to sleep. I worried.

The next night we had the opposite problem.  His cartridge had run low.  His blood glucose went up.  It didn’t go up as high as it had on previous visits.  He is even more fixated on his health and improving his control on his own.  He corrected. He had command of this.

Once again I awoke during the night. I went to his room and tested.  He was high still. He corrected.  I went back to bed.  I wondered if he would drop. I wondered if he would go higher.  I worried. I tried to sleep but I worried.

Tonight he will be in charge of his own care again.He will be the one to wake.  I will wake up just like I have for too many years.  I will wonder what his readings are but I will be able to  roll over and go back to sleep. I won’t be kept awake with a low. I won’t wonder which direction a high will take even with a correction. I will simply roll over and try to sleep…but I will feel guilty because I can just roll over.

I put in my time. I had 16 plus years of sleepless nights between babies and diabetes.  My son has had 16 years of diabetes too.He doesn’t get an end.  As I said, he has become very conscious of his health and his body.  He told me that he already has one faulty organ, so he has to make sure that he doesn’t have any more.

He is growing up.  He is a young adult now. He takes most  things in stride.  I still wish that he could have an end to testing, injecting, carb counting, lows, highs and all of the rest.  Wishing doesn’t make it so. Feeling guilty doesn’t change allow us to change places.  This is just the way it is.   I will keep wishing for that day when I can say “that was the way it was.”

tired

Dear Diabetes, You are 16 now…

1966-chevrolet-corvette-stingray-427-green-silver-3

Dear Diabetes;

You are 16 now.

You are old enough to drive.

You are old enough to date.

You are almost old enough to be finished high school and looking towards a new career.

You are old enough to be looking forward to life on your own.

Unfortunately you don’t have any of those plans.

You are a bum.  You refuse to move on to greener pastures.

You have learned nothing after 16 years.  We have found new treatments to fight you. We have continued to live life to the fullest even when you tried to drag us down.

We have made incredible friends even with you clinging on in the background.

We have continued to live a full life even when you decided to make life horrible by sending blood sugars dangerously high and made my son ill or dropped them low so he had to sit on the sidelines while his friends played.

Diabetes, I have had enough of you.  You no longer wake me up at night. You no longer consume all of my thoughts. You still wake my son however.  Your demands still inconvenience him.  You remain as inconsiderate as ever after all of these years.

I would love nothing more than to kick you out of his life.  I would buy you your own car and send you on your way.  Unfortunately that can’t happen.  You are still with my son after all of these years but guess what? Even when you tried to kill him 16 years ago, he survived! No matter what you have thrown at us, we have survived! It hasn’t been easy.  It has cost us a lot but we are still going.  He has grown to be a strong young man.  I have developed a voice that reaches people in places that I never imagined.

Its been sixteen years since that horrific day when you barged into our lives but we are still strong.  We are still fighting you.  He is still healthy and we are winning. You are still an unwelcome intrusion that we simply tolerate and move forward despite.

 

16 years has changed some things but not everything

16 years ago my son was sick. He was lethargic and whiny. He drank a lot. He went through a crazy number of diapers. The doctor we took him to said he had the flu. We learned the difference a week later.

A lot has changed in 16 years. Not as many people use NPH any more. Lantus and Levemire are now the norms for basal insulin. Insulin pumps are readily available for most children with diabetes in Canada. Glucometers now read your blood glucose levels in a matter of seconds.

16 years ago, I was my son’s primary caregiver. I was the one to test and inject. I counted his carbs and watched for signs of highs or lows. Today my son does it all himself. I have no idea what his last A1c was. I can’t tell you what his reading was a 3pm yesterday let alone what it was at 3am. He is an adult now, struggling to make his way through adult care and its regulations.

Today parents can turn to Facebook for a variety of support groups. The internet offers a treasure trove of resources and information. 16 years ago, our house didn’t have the internet. I didn’t have a cell phone. I was put in touch with one family whose daughter was diagnosed just weeks before my son. We were both lost and working to just stay ahead of the numbers.

I read about parents of newly diagnosed children and hear many of the same fears echoed as we had 16 years ago. They are inundated with information and overwhelmed by what has just happened to their family. They are given tools and worry if they are doing it “right”. Eventually they will learn that there is no right, only what works for them and their family to keep their loved one safe and healthy.

I read about parents who advise the newly diagnosed to “get a CGM” and smile to myself. I remember when they were only available in a hospital and you didn’t know if it was calibrated properly until it was brought back to the hospital to have the results were analyzed. A CGM was a dream that is now a reality.

I have also watched our children become attached to more and more equipment. 16 years ago, the insulin pump was for those with the deepest pockets or the best private insurance. It was a physical reminder of a disease that had previously remained hidden in behind closed doors and in washrooms. Now many people with diabetes are able to take advantage of sensor augmented pumps–wearing a site for insulin to be delivered as well as another sensor to detect bg levels. The technology is amazing.

A recent story in social media reminds us not to become overly confident in that technology however. The story of Jedi the dog, showed that sensors can be off but thankfully that dog’s nose was bang on. Diabetes awareness dogs–again something that has sprung up in the past 16 years. There have always been service dogs. There have always been pets that seemed to know when their owner was high or low but now you can purchase or train your pet to detect the pheromones released with highs and lows. It’s an incredible thing.

A lot has changed in 16 years. My children are young men. Phones have moved from something that tethered you to the kitchen wall to devices that you carry in your pocket and access the world. Insulin pumps have become smaller and now talk to sensors that monitor blood glucose.

Sadly, some things haven’t changed. Care and access to devices can still depend on the size of your wallet or the quality of your private insurance. A cure is still something that some dream about and others have all but given up on.

16 years ago today I did not know the dramatic turn my life would take. I did not know the steep learning curve that I would find myself on. I did not know the incredible friendships that I was about to make. It has not been an easy path with diabetes tagging along but it has brought a lot of blessings with its trials.
16 years