Another Day, Another Feather left behind

The tree is down.  The Christmas decorations are put away for another year.  The house is a little bit more quiet now without the steady banter of two young men and the constant opening of the fridge.  My children were home for a week and it still surprises me how much I miss them when they are gone.

In one week I crammed in as much mom stuff as I could.  There was providing them with food that they love, doing their laundry and sitting around enjoying conversations.  We watched the latest Hobbit movie together and all huddled around watching to see our cousin’s name in the credits.

There was the other stuff that moms take care of too like a stop at the bank to fix issues on both children’s bank accounts.  There was a call to a meter company to replace the iBGstar that my son refuses to part with even though the display was not working properly. There was also the purchase of the small things needed to make life run just a little smoother that only Mom would think of.

It was a busy week.  We quickly fell into the routine of Mom doing more testing and helping with carb counts.  I later wondered if I should have offered to do everything for one day to give my son a complete break. I realized quickly that the idea would not possibly work given his current eating habits. He eats 24/7. I would not be able to keep up. It was much easier to offer carb counts and test while he slept in.

Despite delays caused by Mother Nature, my boys have returned to their other home.  They are slowly getting back into their routine and I am slowly returning to mine.  I still smile however when I see those loose “feathers” in the strangest places.  There is a test strip on the floor in my office where they spent hours catching up on the latest season of Sons of Anarchy.  There is a piece of an infusion set sitting on a table in the living room. How it managed to end up there is beyond me but there is sits waiting to be used…or find a garbage can.

My new role in my son’s life still leaves me feeling off balance and unsure at times. I continue worry and sometimes feel guilty because I no longer have to think about diabetes 24/7.  That is how life goes.  We teach our children and then one day have to step back and pray that they have absorbed some of what we have given them…and remember that we are their for them when the stumble or just need a shoulder to lean on. d feathers

A Costly Disease

Recently someone I know was diagnosed with diabetes. Because this person is an adult, they have yet to decide if they are Type 1 or Type 2.  The process of finding an exact diagnosis exceedingly slow and painful for me to watch.  I want to see this person feeling better and back on their feet. I want them to be able to learn how to take care of themselves and reclaim their lives.

In my desire to help, I have offered tips and information on treatment options. I am fully aware that some doctors prefer a  tried and true older method of care in part because of the costs associated with the best care  options.  I know that this person would want to have the best life possible.  I never thought a lot about the cost factor. I always tend to look at quality of life.

I am lucky.  My son has insurance that covers test strips and insulin.  We live in a province that covers his pump and supplies until he is 25. The only thing that we have to worry about paying for is a continuous glucose monitor and at the moment I am still working to convince him that he wants one.

I also have great credit and have been able to purchase his supplies out of pocket on my Visa card and then pay my Visa off when the reimbursement cheque came in.  Not everyone is so lucky.  In the case of this person who has diabetes (type unknown), there is some insurance but no direct billing.  All strips and medications must be paid up front.  This family does not have a credit card to use to help delay payment.  They have to look at paying everything in cash.

The cost of diabetes supplies was a huge shock to them.  The idea of paying $1 every time this person had to check their blood seemed ridiculous. Their answer was that testing would be cut down or non-existent once the doctors knew what was going on.

My heart broke.  Its not that simple especially if the diagnosis is Type 1(which is a strong possibility).  To stop testing puts this person at risk for so many things.  They do not yet understand how vital the information from that test strip will be for their daily lives.  They do not yet know that testing must occur before eating, during the night, before exercise, and even before driving.

This family now has to learn how to deal with a very serious disease that will bring stresses into their lives that were previously unknown.  There is relief for them in knowing what is going on health-wise but the financial burden is something that they have not anticipated.

We live in a country that is proud of its public health care system.  This family can recieve a diagnosis without worrying about spending a small fortune or having the proper insurance.  They cannot however anticipate any help to pay for the medications and supplies that will be needed to stay healthy after a diagnosis is finally made and that is the biggest tragedy of all.

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Back in the Saddle

Diabetes moved away September first of last year.  Sadly this also means that my son did as well. It has been a struggle for me. I have had to adjust to a new role and honestly, I am not always sure what exactly that role is.  I am a hands on Mom and being a mom from a distance has always been a challenge but with a soon to be 20-year-old living in another province, I am slowly learning.

With the Christmas holidays, I got to be a hands on mom again! It was wonderful to have both of my boys with me. There was baking to eat, meals to prepare and even the odd bit of chauffeuring to be done. It was great.

There was also reminding about bg checks, counting carbs and doing site changes.  Diabetes was back as well. I was worried that I wouldn’t wake up for night-time tests but I did with no problem.  I would easily wake numerous times during the night and get up and check on my youngest son. I knew that he most likely was not testing a lot during the nights on his own so I decided to help him out. I woke every 2-4 hours and tested to give us some great data to look at.

Since my son was here, there was no need for a Wednesday night phone call or waiting for him to upload data.  I have a cable here, as well as his pump and meter.  We could sit down together and discuss the many highs because of the constant eating.  We could talk about basal versus bolus and see what may or may not need tweaking.

With each night test and each dead test strip, I felt grateful.  It seemed weird to walk into his room and test, knowing how many nights I hated doing just that.  This time it was a privilege. I was helping my son. I was giving him a break and keeping him safe while he was under my roof. I wondered if his wife will one day help him this way? I have no idea. He told me that he has a girlfriend now. I wonder what she knows about his care? Knowing how private my son is, I am guessing that she knows next to nothing. That’s okay for now.  When she is important to his life and worthy of his deeper affection, she will learn.

Until then, I will test him at night when he is with me. I will be surprised how quickly we both fall back into old routines. I will remain amazed how quickly time flies and how much my children have matured. I will be grateful for the ability and the opportunity to help my son if only in small ways now. IMG_0164

The WAG King

“Did you bolus for that?”

“No its Christmas. I am not bolusing for Christmas. I decided that I need a vacation.”

“Funny…NOT. How much are you going to bolus for that? Do you even know how much you ate?”

“I am thinking that 60 sounds good. I like it. I think I will bolus 60.”

“Have you actually totaled what you ate to get to that number?”

“No. It just sounds good.”

At this point I mentally groan and begin to do the calculations….”You had potatoes, dressing, some carrot, a glass of milk, and then there was the pie.”

“Don’t count the pie. I just bolused the pie. The pie is covered.”

“Okay so your main meal.  That would be about 58g CHO.”

“See I told you 60!”

Darn, he still has it. He can still make a complete guess on a meal and manage to come within grams of what I would think the carb count for the meal would be.  The WAG King holds his throne for another day.

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No this wasn’t his 60 CHO meal honestly 🙂

Is Ignorance Bliss?

Yesterday my friend Tom Karlya asked the question, “Do you wish you had a lot more knowledge about (not the managing aspect) of what ‘it meant’ when you or child was diagnosed with diabetes?”  It got me thinking back to our life in the early years of diabetes.

I had no knowledge of diabetes before my son was diagnosed.  My mom had a friend with a son with diabetes but I knew them in the days before reusable pens, home blood glucose testing and the popularity of insulin pumps.  He was just a child who sometimes got to lay on the couch rather than play outside with the rest of us.

A bit more knowledge of the symptoms may well have empowered me to ask more questions and demand better answers the very first time my son was taken to the hospital. Hindsight is always 20/20 however.

After diagnosis, there was also a period of ignorance. I knew about Dead in Bed and I was suitably terrified. I understood highs and lows and really didn’t want to leave the perceived safety of the hospital.  When we were forced to go home, terrible things did happen.  One day my son was whining and demanding to go inside. It was the first nice day after a long winter and I was enjoying getting some yard work done. I made him wait. He passed out in the dirt.  I didn’t know that his whiny toddler behavior was also a sign that his bg levels were dropping. I learned quickly after that.

Our first illness and broken arm were also dealt with in relative ignorance. I was still trying to wrap my head around what to do and how things worked. I gave him insulin no matter what. I prayed he would eat–he often didn’t but when he was sick, that seemed to be okay. Ignorance allowed me to continue somewhat buffered. I didn’t fear all of the things that could go wrong. I was clinging to my own sanity, overwhelmed by what I did know and not able to begin to think of all that I didn’t.

My heart goes out to the nurses and doctors out there who do know.  The ones who can “see” and imagine to the extreme.  Ignorance allowed me to learn at a pace that I could psychologically handle. A bit more knowledge before diagnosis may have saved us some serious stress but after? No thanks, the learning curve was steep enough.

medical-team

Its not my disease?

We are constantly told as parents of children with diabetes to remember that this is not our disease.  When you are dealing with a toddler or a small child, it is really difficult to take this advice to heart.  A two year old cannot grasp what is going on in their bodies. It is Mom and Dad’s burden.  The challenge as parents, is to realize that while it was our burden, our children’s diabetes is not our disease.

Last week my son was having technical difficulties uploading his pump.  After many messages and much frustration on my part, I finally decided to ignore our weekly diabetes education session for a bit. I began to wonder if my son was on overload.  He had been to two different diabetes educators in a matter of weeks and had Mom calling him to discuss what was going on.

I began to think about taking a total break. Maybe I should just be letting the “experts” handle this. Perhaps it was time for Mom to just step away.  I was finding myself frustrated and angered when I wasn’t seeing enough data to make educated guesses about my son’s care.  Things were building up and I wondered if I was better just walking away for a bit. I began to think that he would have more peace and learn more if I just let it all be.

As my emotions churned and became more negative, I was hit by a thought. It literally felt like I was hit in the side of the head with a 2×4.  The  weight of this realization made me sit down and shake my head and wonder why it took me so long to “get it”.  I did not need all of that information.  The person who needed it had it–my son! My job was to ask him the right questions. My job was to guide him towards the answers but let him find his own solutions.

With that realization, a huge weight lifted off of my shoulders. I was no longer carrying the burden of an impossible task. I was now sharing, teaching, and supporting–doing my job as a parent.  It felt wonderful!

When I picked up the phone and began talking to my son, I asked him if he had the pump program open.  He was shocked.  Why did he need it? I suggested that he might want to see it so he could decide what needed to be done.

We then discussed the areas that he felt needed to be changed. I asked him what needed to be tweaked, a basal or a bolus ratio.  He said his carb to insulin ratio was perfect.  I asked him why.  “Because the dietitian said so.”  I laughed and said that he needed to say so! We went through a process of establishing if she was right.  The next step was to decide when to make the change.  I pulled out my John Walsh book and quoted to him how to change a basal rate.  He then made the decision of when and how much of a change he would make.

I was proud of him.  I was proud of me.  We were both learning.  He was being empowered and it gave me a huge sense of relief.  This really is his disease. It my job to help him, encourage him and be there to help but at the end of the day only he can test, bolus and adjust. Its all up to him.

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A Rose Colored Life

I am slowly adjusting to not having any young men living in my house anymore. As I have said many times, it is a challenge for me on so many levels. I have found test strips in a few places and I can’t take it upon myself to pick them up.  They are physical reminders of my child. I actually smile when I see them.

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This one greets me in my laundry room each day.

Yesterday I realized how much we can romanticize situations when someone is away.  I am almost looking forward to getting up and testing my son through the night over Christmas. Gone is the dread and frustration that I carried for years.  Now, I will be doing him a favor–and more importantly I will have data to look at!!

Life can almost be rosy when they are away and you are simply talking on the phone or texting.  You can forget the challenges of trying to get a teen involved in his diabetes care.  You can gloss over the attitude that they can carry with them, the eye rolls and the shrugging of shoulders.  You don’t have to consider the fights over homework and grades.  There is a certain bliss about the situation…and then there are the challenges….

I am not there to force him to do homework and improve his grades. I cannot physically see the assignments that he should be paying more attention to but I do see the results in his report cards. I am not there to ensure that he is in the house at what I feel is a decent hour. I am not able to make sure that foods are bolused and testing is done.  This can lead to a sense of frustration and powerlessness. It can be torture….or I can go back to life with the rose-colored glasses fondly looking at dead test strips and remembering only the fondest of memories.

It is funny how the mind works.  I am at the point where I do both–I think of my son’s laughter and sense of humor. I wish that I could still do more about his diabetes care. I want to strangle him and kick his butt over his plummeting grades. I want to hook him up to a CGM and be done with it no matter what he says.

Such is the challenges of a child who is no longer small.  This is the way it is when he no longer lives in the same house, the same city, or the same part of the province.  This is how it is when he is struggling to be his own man.  It can be painful. It can be a learning experience for both of us. It is most certainly the greatest challenge of a parent.

Diabetes Christmas Gifts

Depending on where you live, you may already be inundated with Christmas music, Christmas decorations, and Christmas shopping lists. For some, November is way to early to be thinking of such things. For others, it’s the perfect time to get prepared.

Personally I fall into both categories. Every fiber of my being says, “No!! Stop!! Its way to early to even think of such things as Christmas.”  A tiny little voice however makes its way into my conscience and reminds me that while Christmas is just under a month away and many of my gifts have to be mailed.  This means that thinking about Christmas now so that I have gifts  bought and shipped before the 25th of December is not really a bad thing.

If you are like me, coming up with new and interesting gift ideas each year is a real challenge.  Many people buy what they really need when they need it and what sort of other “stuff” do you buy for them? Hopefully I can help with some gift ideas for those on your list that are involved in some way or other with diabetes.

Earlier in the year I was given the chance to review and read three great books.  Life is Short Laundry is Eternal by Scott Benner is the perfect gift to give to…well anyone! This book is not about diabetes, it’s about love.  It was a book that was absolutely not what I expected and brought an incredible array of emotions. I would still highly recommend it to anyone with a family or ever thinking about having a family.

The second book is a must read for all parents of children with diabetes.  Moira McCarthy’s Raising Teens with Diabetes is a great resource for parents of small children who wish to learn how to prepare for the teen years. This is also a great book for those of us knee-deep in the trenches of the terrible teens.

Finally, there was Gary Scheiner’s latest book Until there is a Cure.  Again, this was another fabulous book by a very knowledgeable man.  If you have someone on your list who is struggling to get this diabetes “stuff” figured out, this may well be the book for them.

If books are not the route that you want to go this Christmas, don’t forget that Diabetes Advocacy also has many great gift ideas.  Looking for a diabetes blanket? The website has one of those and its one of a kind (in fact I have lost the pattern sadly for those people who were wanting to make it themselves).  There are also bracelets and necklaces to fit all ages and sizes. You can add a diabetes ribbon or a diabetes charm to further personalize any of your accessories.

Yes that last part was a shameless plug but remember that it is the sales from the Diabetes Advocacy online store that pays for the costs associated with the work of Diabetes Advocacy. That being said, no one paid me to tell you about the books however, they asked me to review the books originally but my mentioning them again is just because I really think that they are great gift ideas!

Happy shopping everyone!

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The Importance of Learning

Time and time again, the importance of the Diabetes Online Community has been mentioned by myself and others.  It is an incredible place to share ideas, share accomplishments and troubles, and to simply learn no matter how long you have been at this game.

I wish my son was more involved but he remains one of the few teens in the industrial world who has minimal interest in technology and social networking. He has a FaceBook account that he reads on occasion. He almost never adds comments or posts a status. He will never send a tweet or a friends request.  He occasionally “meets” new people on his XBox but even that is minimal.  I have had friends in the DOC whose children have “friended” him but I do not hear of many conversations between them. That may change over time.  I can’t say. In the meantime, I continue to interact with friends and learn for the both of us.

The importance of continued learning struck me the other day. A good friend had asked a question about the best way to deal with a high protein meal.  She is well versed in diabetes care but was being troubled by how protein was creating havoc in the bg levels of one of her children.  With great interest, I read through the many comments and suggestions that she received.

I realized that we had had a similar issue with my son. If he had lobster for supper or a steak and salad, I was often at a loss as to the best way to proceed.  One person with diabetes stated that she didn’t bolus for protein but she would temporarily increase her basal rate.  That made a lot of sense to me and seemed relatively easy to try.

The next time that I spoke with my son I told him about this revelation.  He asked if it would work for a bacon and egg breakfast because he loves a good pan of bacon and eggs in the morning.  I said yes! The amount of added basal and the time to extend would be something that he would work out for himself but he really wasn’t adding a lot of insulin to his system at any given time.

He thought this was a great idea. I was impressed that he took the knowledge and was open to learning how to incorporate it into his own diabetes care.  He is being given a lot of information at the moment but I am proud to hear that he is also listening.  He has told me of some things that he thinks the educators are a bit out to lunch on.  I reminded him that this is his disease.  He needs to take in what they say, weigh it against what he knows about his own body and then go forward.  They may have great advice but it may not work for him. If he knows this in advance then its okay to say that it doesn’t work for him. If he hasn’t tried it, give it a shot, he just may learn something new!

Its a new road for both of us but I think we will make it one step at a time.

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A Child’s Cry for Change

A few weeks ago, a fellow Diabetes Advocate made a request, send him your diagnosis stories.  He felt that too many children were being misdiagnosed when a simple blood or urine test could have saved their family a lot of stress and perhaps even saved a child’s life.  Tom Karlya is now working to gather stories of missed diagnosis and present them to leadership in medicine, health agencies, and government in the hopes that change occurs; the very least being the administration of a urine test (ideally a blood test).

My son’s diagnosis story sadly falls into Tom’s criteria.  For some this story may be very familiar either because you have read it before or you have lived this yourself.  Hopefully Tom and others, through “A Child’s Cry for Change” will see this change.  In the meantime, I will take you back to the year 2000….

It was March.  In our area it was also the season for colds and flu bugs.  The snow was still on the ground but we all hoped it was leaving soon. I had a son who was now in kindergarten and germs were constantly being brought home so I really didn’t think much about it when my youngest son started to seem a little under the weather.  He was also two and due to cut his two-year molars at any moment. Experience had told me that this could make him grouchy and out of sorts so his change in behavior set off no red flags.

As time went on he did not get better. He spent more and more time demanding that I hold him while he slept. If I put him down he would wake and cry.  He was constantly soaking his diapers. We had never gone through so many at one time.  I had to put blankets on our couch to protect it from his urine.  I was concerned but he was constantly drinking so it was no wonder that his little bladder never stopped filling.

While he spent most of his time cuddled with me, making it difficult for me to deal with anyone or anything else in the house, he could manage to get up and around when he wanted. He was able to find the jug of apple juice in the fridge and drink it down when I wasn’t looking. He obviously was not quite as weak as he was pretending to be.

All of this behavior came to a head when he came out of his room with a dirty sock in his mouth.  He had white spots on his tongue and was trying to wipe them off.  Something was definitely wrong so we packed up my son and headed to our local emergency room one hour away.

My son was seen by a nurse first.  She did the initial assessment. I told her of his occasional vomiting, his constant drinking, his clinginess, and wet diapers. She thought he might have the flu.  The doctor looked him over and stated that he had an ear infection.  When I asked about the vomiting and diapers, he asked me if my son was drinking? I said that that was all he did.  The doctor said there was nothing to worry about and sent us home.

A few days later my son seemed worse. The antibiotics were not helping. Now he was constantly sleeping. He only woke to drink.  His diapers were still soaked.  I booked an appointment to see our family doctor.  He would see us at 1:30 pm that day, the 17th of March.

Before our appointment, I bought some baby food.  My son hadn’t been eating and I thought something simple like baby food might be easy for him to digest.  We arrived at our appointment before our doctor had returned from his lunch.  As we sat in the reception area, my son continued to sleep in my arms.  His little body was cold despite the number of layers of clothing and socks that I had put on him.  His breathing was now raspy and it was making me nervous.

It obviously made those around us nervous as well because the people with appointments before us refused to go in until my son was seen. When I went into the office with my son, the doctor only looked at him in my arms.  He gently touched his face and told me to take him to the hospital immediately.  The doctor would arrange for emergency blood work and x-rays but we had to leave now. He said that he was sure that my son had diabetes, ketoacidosis, maybe a lung infection.

I really didn’t know what the first two possibilities meant but I knew that they were bad.  My son was only two.  He had to simply have a lung infection. They would give him antibiotics and he would be fine. I packed him up again and we headed across to the local hospital.

My son never stirred when they poked him with needles.  The technicians had a worried look on their faces.  He never stirred when they did a chest x-ray.  I held his small body upright while they took their pictures.

When we were done we went back to the doctor’s office to wait. We didn’t wait long.  The doctor took me into his private office.  He told me that we had to get my son to the next town now.  He was a very sick little boy.  A doctor would be waiting to see him. There was no time to delay.  We had to leave now.

My son’s father drove. My oldest son sat in the front seat beside him. I sat in the backseat holding my baby. I could not put him in his car seat. I was now terrified. I held my little boy and willed him to live. I prayed and hoped that my breath would be enough for both of us. I willed my life into his. Each breath he took was a blessing. I didn’t see the ride to the hospital. I was told it was treacherous.  There was snow storm brewing. It was not a time to be driving but this was the fastest way to the hospital.  There was no choice.

When we arrived at the second hospital the paper work could not be done fast enough for me. The clerk must have sensed my stress because she personally took me to the ward where staff were waiting for my son.  They tried to weigh him but he was too weak to stand. They put him on a baby scale and told me that he weighed 11.2 kg.  I was scared.  They hooked him up to a monitor to see how much oxygen was going into his blood. It was low. I didn’t how to fix this.

His new doctor examined him and ordered that he be moved into the Intensive Care Unit.  We blindly followed.  My son was now in amongst the elderly and dying. My mind could not take in what was happening. I was numb.  We were soon asked to leave his room and they tried to put in what they called a “heart line”. It was a dangerous but necessary procedure.

As we waited to be allowed back in, the doctor came out to talk to us.  He told us that our son had diabetes.  He told us that he had twelve hours to live.  If he survived after that then they would assess any damage that had been done and we would move forward.  They had to be careful how much insulin they gave him or they risked giving him a heart attack or causing brain damage.  For now we waited.

I nodded and went to a phone to begin to call family.  When my mom answered the phone, my voice cracked and the tears began. I asked her to tell the rest of my family. I couldn’t speak to anyone else. I sat in that little room and cried.

Eventually I was allowed back in the cubicle with my youngest son. I sat with him all night. The next day he began to stir.  He wanted the tubes removed. He would slowly come around. We would be in the hospital for two weeks. We would learn and get stronger as we prepared for this new journey in life with diabetes.

Liam Feb 2000

 

 

 

 

 

 

 

If you have a story that you would like to share with Tom, please email him at Tom Karlya, (aka DiabetesDad) at [email protected]. In the subject line please write: My Diagnosis Story. Thank you. Together we can make a difference.