Category Archives: diabetes fears

Join me on De-Nial

This has been a very emotional week and I have tried to insulate myself from a lot because…well I don’t know if I can handle too much more.  Recently, my family lost a dear young friend. He spent a lot of time at my house while growing up, was a good friend to my children and had only just become a new father himself. He death was both sudden and shocking.  He was only 21 and I still cannot begin to imagine the pain of his parents.

This week I have been seeing many Facebook posts about 3 or 4 children with Type 1 diabetes who died in the within the past few days.  That is way too much death for me to handle.  I honestly have not read the stories. I have heard of officials questioning the diet of an undiagnosed toddler who died–as if his sugar intake could “cause” type 1 diabetes rather than the medical community not diagnosing him? The horror is unimaginable.

As I mentioned the other day, this was also diabetes clinic week.  I still don’t have our most recent A1c back but we got a great pep talk about how its just a number and its only a concern if there is continued problems. I give that speech but it was nice to hear them saying the same thing to my son.  No matter what  reading comes back, I hope we do watch things more carefully, learn and move with forward with a stronger footing.

After the doctor’s pep talk and my mention of the possibility of a rebound at night after what I assumed was an undetected low, our nurse came in.  She reviewed the documentation and said “Oh, he had a really bad low did he?”

I was kind of puzzled. What bad low? What happened? Where was I?

“He went low at night. How terrifying for you!”

Crap! That low! I had put “that low” out of my head.  It was my big failure. It was my biggest fear almost realized. Did she have to mess with my protective bubble? As I said, this has been a rough week and I was doing a great job at insulating myself against any more stress or guilt.

Mess with my bubble she did! Instantly I had a flood of guilt as I remembered hearing someone else innocently telling me that they had woke up to hear my son moaning in his sleep and knowing that I didn’t wake up!  The panic stormed back in as I relived the fear of “what if his body hadn’t kicked out glycogen?”  Was he really going that low? Could something horrible really have happened between the 3am check when he was perfect and the 7am check when he was high?

I quickly shrugged her comment off stating that I didn’t know “for sure” that it had happened. I made adjustments the following night based on assumptions and the fact that he was insulin resistant for most of the next day.  Extreme testing, him waking and telling me he was dropping, and subsequent basal reductions would suggest that a problem may have occurred, but let’s again say that this was all very theoretical.

She simply nodded as if to say “if it looks like a duck, quacks like a duck, and walks like a duck, its probably a duck.”  Or in diabetes terms “If it looked like a rebound, you had subsequent lows at a similar time, and a reduced basal fixed it, he probably went low and you missed it!”  Thank heavens she just nodded and smiled.  That allowed me to slip back into my lounger on the River De-Nial.  Its a beautiful place.  With all of the ugliness of the week, I think I will happily float there a little while longer. The alternative is not a good place to be–terror, guilt, and more sleeplessness.
floating

Is Diabetes More Deadly than Ever? The question remains

Is Diabetes More Deadly than Ever was one of my most read posts.  It was originally written in October of 2010 but the questions are still there. Our children are still dying but is social media making us more aware or is tight control trading a reduction in complications tomorrow for a higher risk of death today? 

Yesterday I heard of another child who died because of Type 1 diabetes.  She was thirteen years old–the age of my own son.  She had Type 1 diabetes–like my son.  She had parents who loved her and who were diligent in her diabetes care but she died anyway.  That is every parent’s greatest fear.  She had hopes and dreams.  She wanted to die an old woman with a book on her chest…sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.

This is not the first death from diabetes that we have heard of in just this past year.  This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation.  Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?

Those of us who live with the unwanted houseguest called “Diabetes”, know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution.  We try to keep the A1c down.  We work to maintain “normal” blood glucose readings at the risk of becoming hypoglycemic unaware.  Its a scary balance.  Night is our enemy as we fear, as these parents did, of waking up to our children “Dead in Bed”.

I put the question out to many parents yesterday–was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?

The answers were mixed.  Many had a new fear of this age of puberty (the last number of deaths were young teens).  Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings?  Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?

Others felt that technology was a good thing.  We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases.  We could not do enough to mimick Mother Nature.  We were not God and could not anticipate all of the body’s needs.  Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.

We have children and we realize a need to protect them.  Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children.  After diagnosis, the need to protect becomes even stronger because we failed the first time around.  Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life–as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7.  To read of a death just shows us that our best just may not be enough.

Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis.  It is now my job to turn him over a healthy body when he leaves my care.  Its a difficult job especially since he is at an age when he is looking for his own independence.  I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.

So to get back to my original question–has diabetes become more deadly? Probably not but it is still no less scary and no less deadly.  Diabetes DOES kill despite those who think otherwise.  The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure.  Its sadly that simple. Until there is a cure, we will continue to hover and pray.  We will lean on each other in a way not available to generations before.  We will learn from each other and move forward but we will never forget those that we have lost….

For Eilish, for Paul, and for too many others.

High Urine…A D-Momma Rant

“Your A1c is good.  Your thyroid is fine. Your urine is high. Are you supposed to have a 24 hour urine collection done?” Our nurse asked us and both of us were unsure. 


I was still trying to process.  Did she say “your urine is high”?  High in what? That isn’t good. Nothing is supposed to be high. Why was she asking about the 24 hour test? She did say high urine didn’t she? 


My mind was reeling but I tried not to overly concern my son. He was less than worried. I was sure that there was not a problem but why did she say high? 


What was high? Isn’t that protein levels? Isn’t that bad.  Doesn’t that indicate kidney issues? 


We have been dealing with diabetes for over 12 years but my son is only 14.  There could not be a problem. I had to be over-reacting.


His A1c’s have always been great. There is no problem. It was just a fluke. 


My son said “Didn’t Grandma die of kidney failure?” 


Yes, but I explained that his previous doctor did not feel it was something for us to be concerned about. 


Crap! I have tweeted. I have gone to my trusty CWD parents list and I have chatted with my peeps on Facebook. I am doing my best to go, “yep, it showed up but that doesn’t mean anything.” (and people are telling me that it does not mean a lot. Even the worse case it is still very treatable with modern medication).


But…Crap I hate this disease! I hate the stress. I hate the fact that I even have to consider that this could be a problem. My son is not yet 15 years old. His kidneys should be lovely, not constantly warding off potential danger because of Type 1 diabetes. 


Okay, that is vented. I will get it out of my head and pray that they don’t call back looking for more urine either way. No matter what, at least we live in a time when doctors are able to be proactive about these things. 

WARNING: When the Fear takes hold

For some reason lately my internal alarm clock is off. I have been waking at 5am.  That is about two hours after the latest time that I would normally wake up. I am not sure what is going on. The first day it happened, I panicked.  The second day it happened, I panicked and then remembered that it was a weekend and the last test would have been done by son less than four hours ago.  The third day was today and I will have to fix this trend fast!

When I woke this morning, I found my son’s bg level was the dreaded 5 (90).  You know? That perfect number that you don’t know which way it will go and you quickly drive yourself insane wondering? Normally I would have stayed awake for a bit to retest, check and see what was going on. Today I was tired. I was worn out and I literally prayed for the best as I headed back to bed.

I woke up a few hours later with the intention of checking to see where his bg levels were but I fell back to sleep. When I finally woke up again, I lay there heavily buried in guilt.  The what ifs began….

What if he did drop lower while I selfishly slept?
What if he seized while I dreamed  peaceful walks?
What if he didn’t wake up when I went to check on him?
What if he had brain damage?
What if my sweet, quirky young son was hurt because of my selfish desire to rest a little longer?
This would ruin my oldest son’s graduation celebrations in a few weeks.
I would never celebrate a birthday again because I had done this. It would be all my fault.

Plagued by all of the horrific sceneiros racing through my mind, I quickly headed across to his room.  As I entered, he stretched and yawned. He held out his hand for me to test but pretended to remain asleep. I lanced. Not enough blood. I lanced again. I squeezed. I waited. He was 6.5 (115ish).  He was fine. There was no coma, no brain damage–just a perfectly fine teen desperate to sleep until his mother peels his body off of his mattress.

I took a cleansing breath and headed off to the couch to sit and regroup for a bit.  This disease can drive you crazy. I thought I was doing well at living in the now.  Not letting it freak me out very often any more. I thought I was rolling with the punches pretty well. I guess we all have our days.  Today was mine. Tomorrow will be better.

The more I read, the more I worry

Today’s prompt is a stream of conscious post.  I am to start with a sentence, write and then heaven help us all!!–simply press publish.  Be forewarned as this may end up worse than my normal ramblings!

The more I read, the more I worry…

The more I read, the more I worry about my son and his diabetes care. Since my son’s diagnosis, I have closely followed adults who were diagnosed as young children.  I have not been nearly so interested in the tales of people diagnosed with Type 1 diabetes at age 12 or even 20.  Yes, its sad but my son knows nothing but life with diabetes. What will that mean for him? How do I best help him? What have other parents done?

I listen intently when I hear people talk who have been where my son lives. I ask them what their parents did right and pray that I can do the same for my son.

I also listen to their tales of rebellion. Some people, who don’t know any different, will tell you that he doesn’t know any other life so how can it be as “bad” as a child diagnosed at an older age? I know that his age offers no protection only more dangers.

A teen is a teen. A young adult is a young adult.  Both tend to feel indestructible.  They cannot die. They cannot really hurt themselves.  Their body will always be there and parents hover and worry too much. They are right in that as a parent I do worry…a lot!

Yesterday my son came home after being away for a few days.  I have yet to look at his glucometer. I don’t want to freak out at readings not done.  He did tell me that he had run high and almost changed his site. He said that he knew I would have said it was the site and made him change it.  He eventually came down without a site change and felt vindicated in his decision.  Last night he was running high again. I told him to change the site. At 3am he was still high, not nearly as sensitive to that high as he would normally be (normally he would be up using the washroom, etc) and I woke him up to change the site.

It left me worrying even more.  I had recently read about a young man who had A1cs through the roof (we are talking serious double digits) before he got back on board with the help of a loving partner.  If my son will ignore site changes and high readings now, will this doom us to him heading down the same path? Will all of my years of hard work protect him through those years? Will I be lucky and he will not take as destructive a path as some? Will he learn? He says that he hates feeling high. He says that he knows his body. Will that protect him? Will he keep calling me? Will he listen? Will he take care of himself?

The fears seem to get stronger over the years.  I partially blame the aging of my oldest son. He is now ready to spread his wings and begin his old life. Mom’s importance has diminished greatly and yet my worries have grown. 

The other day, I wrote a letter to 16 year old me. Some days I wish I could have a letter today telling me that the future will be fine.  Something to guide me over the rough patches and let me know that all of us will be okay.

Fears of a D-Momma

I was talking to my mother the other day about my youngest son’s lapses in memory concerning his diabetes care.  She told me that I was just worried because he will soon be an adult and I will lose all control. He will be on his own.

I laughed at her. I am not worried, I am downright terrified! I am not sure if the terror is magnified because my oldest son is now days away from being 18 and is currently planning his future with little input from Mom.  Knowing that the first child has reached this stage means that the second one is only a few years behind in doing the same thing but the second child has a bit more baggage to consider. 

I know in my head how much my youngest son has learned over the past few years. I see some small changes.  I know that he will learn at his own pace and he will surprise me when need be.  I also know that he will be a young man one day. He will drink. He will most likely do his best to ignore his diabetes.  He has already stated that he would rather go back on injections than have to continue to visit a doctor on a regular basis to have prescriptions refilled. (I told him that he still had to go back once a year either way.  He was not happy.)

He will most likely move to an area where I am not two minutes away.  He sleeps through his lows.  He answers his phone only when he feels like it.  He has no interest in a CGM and I am not sure if I will be able to convince him of its benefits before he goes off on his own.

Its not just about control…being able to tell him to test or to bolus.  Its also about complications.  Its about not waking from a low. Its about not telling people around you about your diabetes and getting into trouble with no one to know the difference. Its the fact that he doesn’t wear his Medic Alert bracelet or necklace unless I tie it to him.  The list goes on and my terror grows.

I can’t dwell on any of it.  It is still a number of years away.  I can only hope for the best. I must prepare myself to accept a happy medium and teach, teach, teach without coming across as preach, preach, preach.  Let’s hope that there is enough wine and hair dye in the world to get me through! Why do I want a cure? To save myself from myself and this list of fears!

High? Low? or good to go?

The air was crisp.  The sun was shining. I was enjoying my skidoo ride with my son as my driver.  I can drive if I must but I much prefer taking in the sights and being a passenger.

As we drove, my son was chatting, singing and carrying on. He was obviously enjoying being on a machine for the first time this winter and cruising through the country.  Suddenly I realized that he hadn’t said anything in a bit.  While I was taking in the scenery, he had gone quiet.  He wasn’t bobbing his head around.  He just drove.

My heart stopped. I began to panic.  I had forgotten that diabetes was with us for a short period of time. I had glucose in my pocket and the glucagon kit was tucked away in my pants. That was not going to help me if my driver was low!

I yelled out over the sound of the skidoo, “High? Low? Or good to go?”

My son looked back at me over his shoulder like I was insane. After a brief glare, he replied “I am fine”. 

Phew! I know that he is good at knowing his body. I know that he is a great driver.  I still had that moment of panic.  That “what if” that quickly consumes your mind and you visualize going head first into a tree because your driver has passed out at the handle bars before you realized what was happening.

The day continued into the evening. Diabetes behaved and eventually I put my imagination back on a leash and continued to enjoy life as a passenger.