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.

Feeling Alone?

Sadly I think that at some point everyone feels alone and isolated.  When you first hear that diagnosis of “diabetes”, you may be overwhelmed, confused, and dazed.  What does it all mean? Once you begin to realize what it means, often you then feel alone.  No one else truly understands what you are going through.  It can be terribly depressing and isolating.

 

If you are a parent, other parents do not understand why you hover over your child so often. Why is it that you don’t sleep at night? The child is controlled isn’t he/she?

 

As a person with diabetes, people may question your meal choices.  They may wonder if you are “faking it” when you tell them that your blood glucose level is off and you can’t be involved in that activity at the moment until it settles back in range.

No one really understands your worries.  They can’t see diabetes and they think that it’s not a big deal.  They seem to suggest that your fears are unfounded. You are just being paranoid.

 

Then you meet another person with diabetes…a total stranger quickly becomes a long-lost friend.  When you speak, you find yourself lost in a world of like–they test like you.  They count carbs like you.  They know what a high feels like.  They understand not being able to do anything when you are low.  They know what a pump is and have a glucometer that they carry with them! You belong!

 

For someone who doesn’t have diabetes, this may sound a bit extreme.  If you live with diabetes, this is very familiar.  I remember the first time I spoke on the phone with a stranger who had a daughter diagnosed with Type 1 diabetes the month before my son.  We talked for an hour.  She was a complete stranger but she understood dealing with lows in a toddler. She had desperately searched for a sugary treat that her baby would eat at that critical time as well. She got it! She was living it too.

 

The first time I went to a diabetes related event, the emotions were no less intense. Everyone had a glucometer.  Everyone knew the carbs in each food item or at least offered their best guesses.  There were insulin pumps and needles brought out with the food. This was “normal” and it felt wonderful and safe.

 

Meeting people online can also be helpful.  To reach out and know that there is someone there who gets it and has been there can be sanity saving.  The very first time I reached out online to a group from the Childrenwithdiabetes.com website and received help…well my world changed forever.

 

Today there are many websites and social media groups that offer support.  They will answer questions, share information, and understand what you are feeling.

 

For months, I have been thinking about these two things…social media support and real life interactions.  How would you best combine them? Ideally you wouldn’t.  Everyone would be able to gather at diabetes events, feel the love, and be refreshed but in real life that isn’t always possible.  What could I do? I could host a Google Hangout!

 

Google offers its own unique way of gathering people called a hangout.  The idea is that a group of friends, family, work colleagues, or strangers, can get together in realtime, using audio and video to talk.  I therefore thought it would be a perfect place to host a virtual support group meeting.

 

If you are feeling isolated and alone, or just want to enjoy some conversation, grab your headphones and microphone and join me in Google Hangout on Tuesday April 29th at 7pm EST. If people are interested and enjoy the opportunity, I will work on making this a monthly event.

 

So mark down the date, check out the link, and join me…or let me know that you wanted to join me but something came up and you want to be a part of the next one!

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! 

She Exposed her Pancreas to the Storm!

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. 

The Blame Game

When a person is diagnosed with lung cancer do we blame them? Do we question their lifestyle and then make them feel ashamed? Do we minimize what has happened to them because they possibly brought in on themselves by not listening to the anti-smoking ads?

 

If a person is young and suffering from dementia do you blame them for drinking too much? Do we shun them because they should have dealt with their alcohol problem before it brought on a much larger issue?

 

We may shake our heads…and they might also.  We may wish that they had chosen a different lifestyle but we often also look at others who lived that exact same lifestyle and are fine.  We wonder why them?  We feel sad, but we do not blame the victim.

 

Why then does society feel that it is okay to blame people living with diabetes for their disease? As a parent of a child with diabetes, we are asked if we fed our children a lot of sugar.  It is suggested as mothers that we did not breastfeed our children long enough to ensure that they developed the proper antibodies to protect themselves from developing diabetes.  The list of non-sense reasons go on to the point that parents become frustrated and angry.  They try to distance themselves from people living with Type 2 diabetes which lives with its own stereotypes in hopes of making the blame go away.

 

People with Type 2 diabetes obviously caused their disease and are therefore to blame for everything. We know that it is a lifestyle disease that strikes people who are overweight, eat only fast food, and are terribly lazy.  It is all their own fault.  Because of their bad behaviors they are the causing  increased hospital costs, increased taxes to pay for those costs, and probably the reason that gas prices are so high!

 

Can you see the logic? You are right, there is none.  Diabetes seems to have a genetic component of some sort that is triggered by something. If we could figure out the hows and the whys, then we would have a cure and everyone would be quite happy.  Sadly, there is no cure. There is no definitive why.

 

As a parent of a child with diabetes, I know that I did not force feed my children large amounts of sugar.  My children were not given sweets when they were younger. They did not have a large amount of processed foods. They were breastfed for differing amounts of times and were both vaccinated on schedule.  Did I do something to cause my youngest son’s diabetes? I pray not but I have enough to deal with without delving into a myriad of “what ifs” on the subject.

 

My son lives with diabetes. He has for the past 14+ years. We have worked and continue to work to keep him as healthy as possible That takes a lot of time, effort and money to purchase the supplies and devices that are best for his care.  The financial cost of keeping him well is nothing compared to the return that the government will get by having a healthy, productive member of society contributing to their tax coffers for many years to come.

 

As person with Type 2 diabetes also faces many stereotypes.  They are overweight and therefore caused their disease.  They are out of shape and live off of fast food. Really? I know many overweight people who do not have diabetes. I have met athletes in great shape who have Type 2 diabetes.  Does body shape make either one of them any less important? Does their age mean that its their fault?

 

Do we blame a child for developing Type 1? No, they are innocent but we can blame their parents. They should have done more! Do we blame adults who find out that they are insulin dependent as well but it doesn’t happen until they are in their 20s?30s? or later? I mean they obviously screwed up somewhere as well right?

 

Are you starting to see the insanity? Why do we waste energy on blame? We do not blame the person with liver failure or dementia for their past lifestyle.  We do not suggest that the parents of a child with leukemia should have breastfed their little one for longer. Why then do we feel the need to blame people living with diabetes?

 

The answer is not changing a name. As Shakespeare says…”What is in a name? A rose by any other name smells just as sweet.”  Well diabetes–type 1 or type 2, is just as rotten a disease no matter what you call it. No matter what the name of the disease involving the improper use of production of insulin is, it is still a disease that happened TO someone. It is not a reason to shun or demean someone.

 

I can think of no other disease that is so misunderstood to the point of creating real danger. A lack of understanding about the serious nature of this disease can result in people with diabetes not having access to the best medications or devices. It can mean that when diagnosed, people with diabetes do not always understand the serious nature of the disease.  It can result in frustration and anger in people living with diabetes when they try to educate the general public, educators and even medical staff about the realities of the disease–its costs and the toll it takes on everyone involved.

 

It is time to end the blame game.  Diabetes sucks.  That is a fact that we must focus on. It is a very serious disease that does not care what color you are, how old you are or how big your wallet or insurance coverage is.  It will enter your life and change it completely.  It will threaten to end your life. It will always hover on the sidelines waiting to wreak havoc on your day. It must be stopped but sadly we must first end the blame and so that we can all focus on the cure.