Category Archives: young adults with diabetes

The Transition Year Troubles

Last week it was  rough being a mother of a young man with diabetes.  My son wasn’t in DKA or anything as horrible as that.  He was tripping up in the world of paperwork, bureaucracy and diabetes care.

Two years ago he decided that he was old enough to handle his diabetes care, appointments and schooling on his own. He chose to move to live with his father and take over the responsibility on all of those fronts.  I was forced to stand on the sidelines and offer advice now and again when asked.

I was also left to order supplies for his pump on a semi-regular basis and this is where the trouble began…

I had placed an order for his infusion sets and cartridges.  On Tuesday I received a message on my phone.  It stated that coverage for my son’s supplies had been refused.  I was to either pay the almost $800 bill immediately or return all supplies.

What the heck? My son was under 25 with no insurance.  The provincial pump program was supposed to cover him. Had he fallen through the cracks? Did someone forget to do his paperwork?

I immediately began making calls and sending out emails.  I was sent a copy of the forms that should have been completed for him.  I called the woman at the pump company back.   Slowly the truth began to emerge and it wasn’t pretty…

The pump company hadn’t received new paperwork for my son regarding provincial pump coverage since 2014.

His diabetes center had only seen him once per year but the provincial policy requires him to see someone three times per year.  He had missed most of his appointments.  They had warned him that doing so would result in lost coverage.  He never paid attention.

His diabetes center was for pediatric care and they believed that he had been transferred to an adult center.  They suggested that I contact his former doctor (whom my son felt was still handling his care).

I called his doctor.  I was desperate for some sort of help both in getting my son to realize how important his attendance at appointments were and finding coverage for his pump supplies.

His doctor would not take my call but did say that he was continuing to care for my son.  Because my son is 18, his doctor felt that it was up to him to fix the mess that he created.  Fair point.  I passed the message along.  My son made the call.

It is a new week.  A glass or two of wine helped me to decompress.  My son is hopefully beginning to understand that while Mom is always there to help, being “of age” means that he has to handle things.

He has a call into his doctor to set up an appointment and chat about what he can do next.  His doctor is willing to help him get things straightened out (him not Mom) . He has booked an appointment with a diabetes clinic closer to his home to ensure that he can make the appointment.

These sound like small things.  In our world they are massive but we will find out way through…and at least there is still wine.

wine

 

 

Graduation + Diabetes + Long Distance=DMomma Stress

Hair done? Shaved?

Hair done. Not shaving.

Don’t forget that I want pictures!

Will do.

Insulin full? Site good? Meter in your pocket? Got a cough drop in case you go low?

Yep, but I forgot the cough drop.

That is part of the conversation between my son and I as he prepared to attend his girlfriend’s grad.  As he was getting ready, I could picture things like a site failure during her procession.  I could imagine him not having enough insulin and sitting at their meal wondering what he would do. I could see him dropping low after hours of dancing and festivities.  I wondered about the alcohol and events that would occur after the ceremony. How would he handle all of it?

Mom’s worry.  That seems to be their job.  grad dance

Son’s on the other hand? Well, in my case, he allows his mother to carry the worry load.  When asked if he had some glucose to take with him, he replied, “I’ll grab a cough drop.”  Hence the cough drop reference in our conversation.

I asked about alcohol.  I got “I can handle it.”  I worried.  I do not condone underage drinking but I am not a fool. I know that it can and will happen. I have talked to my son about it. I am sure that his team has as well. I have shared great posts like this from Diabetes Mine.  He says that he has it covered. I have to believe him.

He made it through her graduation ceremony and the after party.  He claimed  no ill effects.  He did not attend his own graduation ceremony but did manage to show up for a few group photos (minus any suit).  Just as important…Mom survived as well.

grad photo

 

 

 

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
.
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

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.

 

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

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

Still Finding Feathers

My nest has been empty for over a month now and it still taking a bit to get used to.
My son has been quite good at making sure he uploads his pump for me to look at his readings. He appears to be testing more than once a day so I try to offer little criticism and simply make gentle suggestions where needed.
Moving diabetes to the back of my mind after all of these years is a challenge.  I still wake up a lot during the night. I still worry but that is what Moms do. I worry about both of my children. Diabetes just gives me one more thing to be concerned about.
I really don’t miss diabetes. I don’t miss having to get up in the middle of the night. I don’t miss wondering why he had a higher or lower reading than expected. I don’t miss time spent at diabetes clinics.  I don’t miss trying to figure out a new insulin pump.
I do however miss my son. Don’t get me wrong, I miss both of my boys but I have had a bit longer to get used to my oldest being away.  My youngest and I have spent a lot of time together over his lifetime.  His best friend is my best friend’s son.  We visited together. We went on trips together, we counted carbs together.  He is now enjoying life on his own–doing stuff without Mom always there. I am sure he is loving the freedom! It’s different for me.
I still miss walking into the kitchen and seeing him sat at the table surrounded by a fridge full of food.  I miss seeing his chin up bar dangling from a door way. I miss his dry, quick whit and timing. I miss the chicken fights that we would break into as we met in the hall. 
We text every day.  We talk at least once a week. I make sure that diabetes is the last thing that we discuss. It is rarely ever the very first. I ask about his day, his school work, his friends…then I ask about readings, meters and his pump. When he tells me “I screwed up.”  I try to remind him that his job as a pancreas is both unnatural and exceptionally difficult.  As long as he knows what he did wrong and he tries to fix it next time, its something to simply learn from and move forward.
I still find test strips in the most unusual of places.  There was one in my washer even though I have not done any of his laundry in ages.  We have a fridge full of insulin “just in case”.  There is a bottle of test strips that I found hidden in a box and part of an insulin cartridge that still sits in a place of honor in my car.
My new life of a Mom of children who no longer live at home is still very busy. My boys are always in my thoughts and their ability to stand on their own shows that I have taught them independence.  They will be home at Christmas.  I will savor every moment. I will fall back into the testing routine.
Life is changing.  Change is part of life but finding those little feathers (also known as diabetes waste) in hidden places of the house no longer make me grumble at their ability to “jump” out of the trash.  They now make me smile because they remind me of my son.
empty nest Dstyle