Category Archives: type 1 diabetes

A Bucket of Gratitude

We all have seen how insanely popular the Ice Bucket Challenge has become.  Stories of how much money ALS has raised since this went viral versus how much money it had raised in previous years are astounding.  What is equally moving is the stories of families touched by ALS.  I dare you to watch any of them without a box of Kleenex.


Last week on the Diabetes Advocacy Facebook page, I shared with you Moira McCarthy’s thoughts on this phenomenon and whether diabetes should be doing something similar. Reading about how ALS had touched her family brought tears to my eyes and I was so glad that my son “only has diabetes”.


I have not watched many of the ice bucket videos.  I have seen a few that have auto-started on my Facebook feed but for the most part I simply have said “I hope that they are donating” and “Better them than me but it is for a good cause.”  There are a few from friends who state that they have a personal connections to ALS that I do make sure that I watch .


Maybe that is why I played this next video.    It was from a Facebook Friend who had a child with diabetes who said that ALS had come to call. I was curious.  Would it be her father? Grandmother? I was sure that it would be sad but I had been following the many blessings in their lives. They had recently moved across the country into a dream house. They had enjoyed an amazing summer spent traveling throughout this great country of ours.  Life was very good for them, wasn’t it? After listening to her tell her family’s story, well let’s just say that I was again left very grateful that all my son had to deal with was diabetes.


I know that diabetes kills. I know that diabetes is serious.  I know that things can change in the blink of an eye.  In the past month we have seen depression kill Robin Williams.  We have seen countless stories of how ALS has impacted and destroyed lives.  I have seen a family devastated when a father tried to save his drowning daughter only to be killed instead. Life and death happen. We deal with the cards that we are dealt but some of us have greater challenges to face than others.


In a blink of an eye it could be worse–so much worse. Diabetes can be cruel but life with diabetes is getting better. Highs are still brutal in their destruction of the body.  Lows are still deadly especially when they happen at night or when a person with diabetes is alone. There is hope however. Technology has created major changes.


We have the bionic and artificial pancreas projects.  We have CGMs, rapid insulin, and smart pumps.  We have apps to count carbs and apps to get us out of trouble.  We have a wonderful community of people living with diabetes who get it and support us every day.  Diabetes sucks but after seeing what others live with…well I will take diabetes with a bucket of gratitude.

gratitude bucket

What’s in a Name?

If there is one positive thing to come out of the tragic passing of Robin Williams, its the fact that so many people are talking about depression.  There is a huge effort to help people to understand the dark insidious nature of this disease–and the fact that it is a real disease not just a feeling of melancholy that we all experience now and then.

Clinical depression is a prolong sadness that has a chemical component that most often requires specific medications to begin to improve. It requires the use of a medical doctor and can be physically debilitating.

The most interesting thing that I have read in the past 36 hours or so since I heard about Robin Williams’ passing is a debate that I hear in the world of diabetes all of the time–people would pay more attention to this disease if it had a different name.  People think of depression as fitting things like “rain on your wedding day and a free ride when you already paid” to quote Alanis Morrisette.  These are not exactly issues that lead a person to take their own life…unless they are already experiencing a much deeper pain.  There is a feeling of a need to disassociate the mental illness from the emotion.

In the world of diabetes, we see this same desire often.  People feel that the label Type 1 diabetes does not go far enough. It doesn’t show the true nature of this disease.  It does not remove itself far enough away from another condition that is often associated with poor diet and the ability to be “cured” with diet and exercise.

Personally I am always led back to Shakespeare when this debate is brought up.  “What’s in a name? that which we call a rose By any other name would smell as sweet.”  Okay, diabetes is not as pretty as a rose and when you can smell “sweet” when dealing with diabetes we know that you are in serious trouble but you get the point. A name means nothing. It is all about the awareness.

Type 2 diabetes is not limited to people who are overweight. It is not magically cured by diet and exercise, but it is able to be managed that way unlike Type 1 diabetes.  Type 1 diabetes will not be cured with insulin.  Wearing an insulin pump does not mean that you don’t have to think about diabetes ever again.  Misconceptions.  Fallacies. Misinformation.  It happens with every disease.

The general public is ignorant about many things. I knew nothing about diabetes until it tried to steal my son in March of 2000.  I now know more than some medical professionals but I know little about Multiple Sclerosis or other diseases. We educate ourselves to what is important to us. It is our job as people who have become experts is to educate the outside world to the important parts of our conditions.

They do not need to know how to carb count but we must work to teach the general public that there is no known cure for diabetes…unless you are a mouse.  An insulin pump does not mean that you have diabetes “really bad” and it does not cure your diabetes. It is a management tool that requires work and fine-tuning but is preferable by many to help maintain better blood glucose levels.  Myths must be debunked to create better understanding and support.

Much of the same can be said for depression. It is important that the stigma be removed–just as the stigma of diabetes needs to be gone.  No one “caused” either condition.  Both require medical attention and serious work to be able to manage.  Ironically depression is twice as common in people living with diabetes as it is in the general population and if you have depression but don’t currently have diabetes, don’t worry because people living with clinical depression are more likely to develop type 2 diabetes!

Robin Williams is getting people talking about depression. Mary Tyler Moore, Brett Michaels, and Nick Jonahs have all done the same thing in the world of Type 1 diabetes.  Our goal as people who live with these conditions each day is to make sure that the conversations do not end and to take this opportunity to educate people on the realities and dispel the fantasies.
rosePlease remember that if you are experiencing a prolonged sense of sadness that is impacting your daily routine or having thoughts of suicide, please contact a medical professional. If you are having trouble dealing with life with diabetes, a counselor or life coach may help you to find new coping mechanisms.

Support in the Strangest of Places

I am an avid reader. I have loved to read since I was a child. If I could find a way to read for a living, I would be a very happy and ideally very rich person.  I read everything. I read action books, mysteries, spiritual books, diabetes books, and most recently a book about a mother of a girl who has anorexia.

I am not exactly sure what made me decide to open this book and read it.  Perhaps it is my own struggle with my body image. Perhaps it was the fact that is was a mother telling a story of her struggle with her child’s potentially lethal disease.  Whatever it was, this book quickly showed me that being a parent of a child with a disease–any disease, sadly puts you in a club with more similarities than differences.

Brave Girl Eating by Harriet Brown, first hit home when she wrote “you’re not to blame, you’re not alone, and you can make a difference in your child’s life“.  What a powerful statement! It needs to be a poster in our diabetes clinics.  It is a statement that each and every parent of a child with diabetes needs to fully understand and embrace.  As I have said before, we carry our own guilt and are further burdened by the misconceptions of others. We need to know that we are doing our very best and that is all that any one can ask.

For some reason, Ms. Brown seemed to make more than one comparison of life with anorexia and life with diabetes.  I am not sure if she knew someone living with diabetes or in her research she found some similarities but she does make reference to living with the disease on more than one occasion.  She also makes many statements that could easily apply to living with a child with diabetes.

She talks about feeling overwhelmed by her daughter’s illness and then feeling guilty about it. “I can take a walk, read a book, shut out the anorexia for a little while. But its insider her. She can’t get away, not for a second.” How many  parents of children with diabetes have felt that exact same way? How often have we felt guilty because we could sleep through the night when our child went away to camp or when we went on vacation and left them with a responsible parent or loved one? It hurts us to know that we can leave it behind but our children can’t.

She talks about things like her daughter lying to her about food and again the issue crosses over easily into life with diabetes.  In our case, our children tend to reach an age where they lie about food intake, insulin dosing, or bg level readings.  The violation of our trust is devastating either way and in both cases the lie is brought about by frustrations with a disease. It isn’t any better no matter where it comes from. The pain and sadness as a parent is equally overwhelming.

Ms. Brown talks about wondering if her daughter’s behavior is because of anorexia or simply because she is a teen?  When my son was small and would fall asleep during the day, I would panic and test him.  Was he sleeping because he was a toddler who was tired or was he low and had passed out? If he threw a tantrum, was he being a child full of spite and temper or was his rage fueled by high blood glucose and therefore he may not completely responsible for his actions? How did I decide? How did I find a balance with punishment? Like the author, I struggled.

In Brave Girl Eating, the author also talks about stigma.  In this case the stigma of a mental illness. In diabetes, we know that there are many stigmas and fighting the public’s misconceptions can often be almost as difficult as battling bg levels.  To make things even worse, there are an increased number of people living with diabetes who also are dealing with eating disorders (is it any wonder when their lives revolve around food 24/7) as well as depression.  They must understand this book in more ways than I can begin to imagine.  How painful.

Ms. Brown also speaks to the idea that anorexia has taught her to live in the moment. Ironically diabetes has had a similar effect on my own life.  Learning to live life four hours at a time was the only way for me to cope.  Nothing else mattered. Tomorrow was too far away but his NovoRapid would kick in within four hours and it could fix that high, maintain his perfect reading or be just enough to send him low and create more havoc for me.  Four hours–just get through four hours and then go forward.

As I mentioned, ironically she notes the similarity to diabetes more than once. In learning to live with the new normal of life with anorexia, she wrote, “I told her if she had diabetes, she’d have to test her blood sugar every day; at first it would be a pain, but she’d get used to it.  It would become just one of those things she had to do, like brushing her teeth.  It would become part of “normal” for her.”  We know that diabetes is a bit more than testing daily.  We know that you never really get used to lancing your finger each day, but it is something that has to be done…like brushing your teeth.  It is something that you somehow have to come to accept in order to move forward with your life.

Its funny where you find inspiration and camaraderie. I started this book because I was in part looking for insight into my own body image issues.  I finished this book realizing that parents of children fighting illnesses may have many more similarities than we thought possible.  When we open our minds and our hearts, we find support in the strangest of places.
eating

Another Corner Turned

The weekly bg reading review that I had dictated in September has long gone by the wayside. I occasionally ask about readings on the phone or over text conversations but I try to keep it to a minimal.  If my son gets into real trouble, he calls or texts me with his SOS.  Diabetes care is remaining in the periphery of our relationship as he strives to make it on his own. We still talk about care and I still like to know what is going on but I think I truly have turned a corner in my new role and acceptance of it.

A couple of weeks ago, I suggested that we have a phone conversation about his readings in the coming days.  My son told me that he had an upcoming appointment with his CDE.  I then suggested that we wait until after the appointment and then we could discuss what was or wasn’t done and see how we felt about it.

My son thought that was a great idea and we set our new date to chat.  Last week that day arrived.  I knew that my son’s readings had been uploaded by his educator (my son has managed to lose two cables for his pump and I feel bad contacting our rep for a third one). I went online to see what the readings looked like.

As I opened the screen I laughed and laughed.  There were a lot of boluses and insulin cartridge fills but I only saw two readings. I laughed some more! For a change, it was not me who got to look at no data and try to sort things out. It wasn’t me to go…”What gives?” only to be told that he had used other meters but didn’t have them with him. This was not my problem.  I laughed some more
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It felt good to have that burden lifted. Whether there were or were not readings, I was not the one who would bang their head in frustration and begin the tedious task of trying to track down information. The smile remained on my face.

Later that evening I called my son and we discussed his appointment.  It had gone well. He had readings on a different meter and the two of them had discussed the area my son knew was a problem.  My son was pleased that he wasn’t told what to do but asked his opinion on the problem.  Suggestions were made by both parties and my son left happy.

Mom wasn’t needed.  For a change, that felt okay.  My son was happy. He had made his own decisions. He had been able to talk to someone about his care and share his knowledge. It was a win-win situation as far as I could tell.

I will still call and talk readings. I will still be here to troubleshoot and to cheer from the sidelines but my son really is taking charge. He can do this. I always knew he could but the fact that he is doing it makes me feel a bit better…well for today anyway.
corner

The Bad Kind

The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“.  I had only read the introduction when I wanted to cry.  Why is there so much judgement surrounding diabetes? Why do people living with diabetes feel that they are either good or bad? Well, as Ginger points out, its because there is so much good and bad mentioned when talking about the disease.

Your readings are good or bad.  They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one.  The food you eat is either good food or its bad and a diabetic shouldn’t eat it.  Your A1c when you see the doctor is either good or bad.

The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”.  Another person had mentioned that someone had died because they had the “bad kind of diabetes”.  I wanted to say that there is no good kind!  You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way.  It wasn’t my place to educate at that time.

The good kind I assume, is the kind that is managed by diet and exercise  but is it really that good? You still have to live with guilt for each piece of food that enters your mouth.  You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–”You have the bad kind of diabetes”.

What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?

Personally, it is always bad.  In all of those cases, our bodies have rebelled against us and are not working as they should.  We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t.  That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.

This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes.  Sadly this is not the case.  Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier.  Unfortunately, that “good and bad”  issue stops that from happening. People fear that they will be “bad” if they are on insulin.  This further translates to the thought that  those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.

I thought about other diseases and wondered if any others have it “bad”.  Cancer has stages.  Diseases like MS are referred to has having “full blown MS” versus the early stages.  I could not think of any other disease that allows people to have the “good kind” or the “bad kind”.  Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes.  We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.

What is the answer? How do we fix this? I don’t think that there is a quick fix.  I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”.  We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.
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A Salute to the D-Warriors

Back to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to.
My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.

In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.

I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.

My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”

I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.

Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.

His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.

I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke.
After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.

As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.

How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.

As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.

It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.

This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.

I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.

As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.

I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.

The Countdown to NO SLEEP!

This morning as I woke up, my first thought was…”This time next week I will have been up during the night to check my son’s  bg levels!”  I know that parents who do this every night will be thinking that I am insane but I am actually looking forward to it.

It has been over six months since that fateful day when my son moved back to his home town to live with his father and left me with an empty nest.  I still have a barrage of emotions that flow through me at any given time.  I have been a full-time mom for 20 years and a pancreas for 14.  I felt like I was terminated without notice.  I wasn’t. It wasn’t personal. It was a choice he felt that he had to make for his own growth. That has been something that I have had to come to terms with…and am still working on.

When my son left, I had a firm plan.  He would be in contact with me weekly.  He would share his readings with me thanks to his new insulin pump system.  We would look over readings and he would learn how to make his own decisions. I would remain as hands on as possible with hundreds of miles between us.

As with all of my plans, it was a great plan.  As with many of the plans that we make in our lives…well it was a great plan but reality was far different. The first month or so we would call each week.  He had issues with uploading his pump information but sometimes it worked.  There would be a lot of missed tests. I would do my best not to freak out and ruin our time together.

Soon he saw his new diabetes team and they had their own plan.  They arranged for my son to see a new educator on a regular basis to teach him how to handle his diabetes care.  Two teachers would confuse the issue.  My friends reminded me of how much I had taught my son over the years.  I had to step back.

I would be lying if I said it was easy to do. I have been a hands on parent for 20 years. I have been a pancreas for 14. I am a control freak. Letting go has always been really hard for me.  Letting go of something that directly impacts the health of one of my children?  Yes, the pain of doing that was physical but I have tried. 

I no longer ask about bg levels every day.  I ask about once a week how things are going.  I ask if we need to have a chat. Does he need to make any changes to his rates? Our weekly chats have drifted further and further apart to the point of the occasional text message that reads “CALL YOUR MOTHER!!!”  Followed by a phone call, a wonderful conversation and said child responding “What do you mean I don’t call you? I call you every day.”  I reply “in your dreams. We haven’t talked in ages.”  To which he charmingly replied, “Oh, well I think about you every day.”  My children are smooth and have figured out how to appease a mother’s bruised heart.

Like I said, the “we will talk weekly” rule quickly was disregarded.  We text daily. I know that he is alive.  He has a life that involves girls, skidoos/quads, friends, and school. Mom and diabetes are relatively far down the list because let’s face it, they will always be there (at least in the mind of a 16 year old). 

Occasionally I will tell him that it is time that we chat about his readings. Recently I was struck by the similarity of me saying that and that note on the calendar stating you have to see your diabetes team–tomorrow! When I tell my son that we need to chat and review readings, I instantly get inundated with excuses.  “Well, now isn’t good. I had a bad site the past few days and my readings are everywhere.”  “I forgot to bolus my breakfast and was high so things are really out of whack.”  There is always something but as a great friend reminded me, he knows the whys behind what is going on.  This means that he has learned.  He will hopefully also learn to apply this knowledge but for now at least in hind sight he can say, “Mom, I messed this up and this is what happened.”  I guess in the world of diabetes care that is a bonus.

So for today I will count the sleeps until I have sleepless nights for a few days. I will enjoy counting carbs and monitoring testing patterns for part of the Easter holidays.  After that, I will go back to adjusting to my children growing up and being independent.  I will sleep through the night and know that I have taught them well…and pray that a Higher Power will keep an eye on them both when I can’t.

 

Insulin 101…It saved my sanity!

I recently began thinking about the most liberating thing that I learned after my son was first diagnosed with Type 1 diabetes. I have always said that it was to take life four hours at a time.  That did help but before I could learn that, I think I had to learn one more important lesson…how his insulin worked.
 
Once I understood how my son’s insulin worked both of our lives took a dramatic change for the better. As I have said many times, when my son was first diagnosed he was in DKA and given hours to live.  I knew that they gave him insulin and that is what helped him to survive.  That connection stayed with me long after we left the hospital. I knew that he had to have insulin injected to live but I didn’t understand the roles of insulins that he had been given. This lead to battles and frustrations on both my part and that of a confused two-year old.
 
At diagnosis, my son’s doctor believed in using the most up to date insulin regimens.  That meant that he was given NPH and humalog for his meals.  Again, I didn’t really understand this in my newly diagnosed, muddled mind.  I just knew that he had to have insulin to live.  I had to give him both insulins and he had to eat what the dietitian told me.
 
In fairness to my dietitian, she also told me that if I wanted I could learn to count carbs and feed my son only what he wanted and give him just the insulin that he needed for that meal.  What she said made sense.  Not all bread was created equally and therefore not requiring the same amount of insulin.  Despite knowing that on an intellectual level I was blocked on an emotional level.  He must have all of the insulin I was told to give him in order to stay alive.  This blocked thinking lead to struggles and trauma for everyone involved at each mealtime.  Breakfast could last until lunch and supper could easily run into his bedtime snack.  There were tears on both sides.
 
One day I found an email support list.  I asked for help trying to make my son eat.  A woman, who went on to become a great friend, replied to my email instantly.  She said “Don’t force him to eat and just don’t give him his humalog.”
 
For whatever reason when she said it (or wrote it) everything clicked!  The NPH had a peak. That was what the snack times were all about but the humalog was a rapid acting insulin meant to cover his meals. No meals? No problem. No insulin.  He would always he his small snacks so that was not a concern.  Smaller meals? Well my dietitian had told me how to count carbohydrates and figure out his carb to insulin ratio so that was okay too.
 
My world changed completely…and so did my son’s.  We no longer fought about meals. If he didn’t want to eat he didn’t.  There were no more special meals or catering that I hated to have to do.  I could treat him the same way as I did his older brother. In other words, he could be a kid first and a child with diabetes second.
 
This also meant that we could handle birthday parties in a whole new way.  I learned the carb counts of most party food and he could enjoy meals with the other kids.  He could have cake! Most cake was around 25g CHO which was his snack amount so I would save it for 2pm (which often was when they settled down enough to have some anyway) and he could eat with everyone else.
 
Learning how his insulin peaked and what it was used for was the most liberating thing I could do for my son and my own sanity.  Once that was under my belt, I could work with the other factors.  I could break life down into the four hours of rapid acting insulin life.  One major hurdle was overcome. A small piece of my sanity saved! Humalog

She Exposed her Pancreas to the Storm!

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April 1 Mother Nature played a cruel joke on the area that I live in. We were subjected to an incredible amount of snow that just did not want to end.  I was not happy at all.
 
To make matters just that much worse, I actually had to go out in the mess and drive! I hate driving in snow. I hate having to worry about other drivers in snow. Basically I would much rather hide under the blankets until summer but despite my disgust, out into the not so lovely winter wonderland I went.
 
As I was cruising the city streets on my way home, I watched a young lady battling the elements to get to her destination. I was seated in a lovely four-wheel drive truck that was producing heat and warming my back with heated seats. This poor child was outside walking in the snow and the wind.  I shivered as I watched her.
 
When she walked in front of the truck I saw something on her belt. I looked again. There was no doubt. She had an insulin pump on her waist! What was she doing with her pancreas out in this weather? Wasn’t she concerned about the insulin freezing? I couldn’t see her tubing but I could plainly see the pump. It was exposed to the wind and biting snow.  That could not be a good thing. I was certain that having your pancreas hang out during a nasty spring/winter storm was not a good thing.
 
Despite my concerns, she crossed the street and my light changed. I continued to make my way home but I also worried about this girl. Did she have very far to walk? How long would she and her pump be exposed to the elements? Would she run high because of cold insulin?
 
I then began to worry about myself.  Why was I obsessed by this? Because I am a mom.  Because my mind thinks like that.  Because I worry…even about children with diabetes who aren’t mine. Oh my!

Do not clean with soap and water

Today my phone went in for a cleaning. It wasn’t supposed to be cleaned but somehow it stayed in my pocket when the item I had been wearing before my shower went in to be washed.  Something told me to check my pockets before tossing it in soap and water but in my morning fog I forgot.  A little while later, in a bit more of a panic, I checked the now wet pockets. Nothing in the first pocket! Perhaps I was safe.  I checked the submerged pocket…it was heavy.  That could be water weighing it down…Or it could be my phone.  Crap!

I began drying my phone, watching the screen flicker, wondering what I will have lost this time since I hadn’t backed it up, and finally pulling the battery and sticking it in a bag of rice.
I am not sure if my phone will survive. Part of me says, “Yes it will! I caught it early. There wasn’t much dampness in it. It will be fine!” Another part says, “Dude you are screwed! There was some sort of red dye that I wiped off when I was drying it. I am guessing that is one of those markers that tell manufacturers that it was submerged. This is not good. ”

Yes, I wanted a new phone. My phone has been acting weird and basically annoying me for months but I want the latest iPhone. I don’t want the current version when a new one will be out a few months after this one. I don’t want to pay for a phone this month that in two months will be free because it is now the older generation.

I won’t get ahead of myself. For now, I remain phone-less for at least the next 24 hours. That feels weird. I have had a cell phone for 14 years now.  It was an essential part of our life with diabetes. It allowed me to be away from home and still in reach of my children or any adult supervising my children. It allowed teachers to call and ask me a question whether I was at home or in a meeting or grocery shopping.

As we learned to text, it allowed my youngest son to send me messages about bg levels or issues he was having when he was away from me.  It allowed me to keep track of what was going on with his diabetes care no matter where either of us were.

Being phone-less means that I can’t do any of these things…at least not as easily.  Previously this situation would have thrown me into complete chaos.  While I am going through personal withdrawals because I like to text someone when I am thinking of them, it is not the catastrophe that I would have once thought it was.

There is a land line that people can reach me on if a life threatening issue arises. I have access to email and online accounts if someone needs to reach out.  I may not answer these questions while I am shopping or running errands but I will get to them at one point.
I am not panicked because my kids cannot immediately call or text.  They can still contact me. They can take care of most issues on their own…even the diabetes related ones.  That is scary! It’s not scary that they can handle things, its scary that I have reached a point that I know that they can! They are not just growing up but I am learning to let them fly!  

It still feels very weird not having my phone (and it has only been two hours!) but it is equally wonderful to know that my kids are okay on their own.  I no longer have to be there to walk them through emergency site changes or trouble shoot a high. My youngest has got this…most of the time and for those other times, well, we will talk about it when we get the chance. 
wet phone