Tuesday, April 15, 2014

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.

 

Tuesday, April 8, 2014

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

Thursday, April 3, 2014

She Exposed her Pancreas to the Storm!

IMG_1283
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!

Monday, March 31, 2014

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

Tuesday, March 25, 2014

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.
blame

Wednesday, March 19, 2014

5 Things that I have learned about me over the past 14 years...

Diabetes has a very steep learning curve.  Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly.  We learn how to work with our children and help them to understand what is going on in their bodies.
 
In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape.  It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…
 
1. I became more empathetic thanks to diabetes.  I like to think that I have always had empathy.  I try to never judge a book by its cover and I tried to teach my children to do the same.  We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.
 
Kerri Sparling brilliantly illustrates this point in her book Balancing Diabetes.  If you haven’t read the book, you should do so.  You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.
 
Diabetes has brought me that same sort of need to defend others.  When you see my son, you think that he is perfectly healthy.  You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone.  I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t.  He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.
 
2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up.  Things will not change if you mutter to yourself.  If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.
 
After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them.  We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.
 
Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes.  That was me.  I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families.  They were not scary people with a lot of power but loving people who were often willing to listen to you.
 
I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.
 
3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online.  They touched my life and helped me in more ways than I could imagine. The inspired me to do more.  I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Life conferences.
 
I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”.   When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.
 
4.  I am not in this alone.  Fourteen years ago, I knew no one with children with diabetes.  I was given a phone number of a family diagnosed just before my son and we talked on the phone one day.  It would take us years to meet up.  In the meantime, I would find an online support group that helped me find my way.  It empowered me and educated me.  The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.
 
Over the years, that support team grew.  I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes.  Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.
 
And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges.  Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.
cat

Monday, March 17, 2014

Fourteen Years Since My World Exploded

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. 
 
14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come. 
 
14 years later, my son is a young man making his own decisions and stretching his wings...who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next. 
 
14 years have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care. 
 
14 years ago, diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. Its just his "thing" to live with.
 
We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times--failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little. 
 
Diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them. 
 
14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never forget...my son has but I haven't. Instead, on days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology! 
 
Diabetes sucks but life after diabetes...well its still life and that is pretty amazing!
2ish2