Sleep Guilt

I put my son on the plane back home the other night.  He had been visiting over Christmas and it was time for him to head back to school.

When he first arrived and we sat down to our first meal together, it struck me how much I had forgotten.  Well, not exactly forgotten but as I stared at his plate and mentally counted the carbs, it was not done as quickly as it had been before.  The numbers that were once computed in a fraction of a second, took time to ponder, add and re-add to ensure that I had them correct.

It was still habit to compare carb totals.  I still reminded him to check his blood glucose readings and suggested pre-bolusing for meals. Some habits don’t die but still I was shaken to realize how out of practice I had become while he had to be as sharp as ever.

I worked to step back a bit more.  This is his disease. I can make suggestions but he has to take the actions….and he is.  A first night with the DexCom showed me that my fears were not exactly warranted.  Yes, there were trouble areas, but my son had a far greater handle on things than I realized.  He had paid attention to at least some of those years of training.  He was slowly coming into his own and developing his own style of care.

He made mistakes.  We all do.  We bounced ideas off of each other. No changes were made to his regimen without his input.  I was proud of his questions and his answers to my questions.

On the final day, just before we left for the airport, we took out the trial DexCom sensor that he had been wearing. Its accuracy was becoming near perfect. It hurt us both to take it off (him more than me because it was caught on a few belly hairs).

Before he went through security, we stopped at Tim Horton’s for one more chat before he left.  He had to test before he ate. He could only guess if he was rising or falling.  His life was going back to his normal and so was mine.

Out of practice stabbing the child so I stabbed myself instead :o
Out of practice stabbing the child so I stabbed myself instead 😮

As I drove away from the airport, I felt terribly sad and guilty.  I got to drive away.  I didn’t have to think about carbohydrates until the spring.  I didn’t have to stab myself with another infusion set needle until Easter. I didn’t have to be up all night again chasing highs and a questionable site.  I was going home without diabetes–he wasn’t so lucky.  Diabetes wouldn’t let him go it alone.

I know that its foolish to feel that way. There is nothing that I can do. I couldn’t protect his two-year-old little body from attacking itself all of those years ago. I can’t fix him today.  I can offer access to information.  I can be there to help when I can. I can advocate on his behalf but I can’t carry his burden.  It’s a job that is his alone.  He does it quietly and without fanfare. That’s just his way…but I am his momma and I still wish I could make it go away.

Hello…I’m a Glucometer

Diabetes Blog Week

Write a short story personifying a diabetes tool you use on a daily basis. A meter, syringe, pump, pill, etc. Give it a personality and a name and let it speak through you. What would it be happy about, upset about, mad about?  (Thank you Heather of Unexpected Blues for this topic.)

Hello, my name is Fred and I am a glucometer.  You would think with a job as important as mine that I would get a lot of respect but I don’t.  I am shoved in dark pockets, thrown around and basically taken for granted. Its a very rough life.

I am expected to be ready for service at all times of the day. It doesn’t matter if I worked hard all day, they still expect me to be bright-eyed and shining at three in the morning. And when I say shining, I mean that they really want me to light up all nice and bright showing them glowing pretty numbers. When they are done with me, they just toss me off to the side again.

My job is tireless.  They smear blood all over me.  They curse at me when they don’t like what the reading is.  Like that is my fault? How is it that I control what their blood glucose is going to be? I deserve a lot more respect.

The only time I get respect is when the parents or the doctor take a look at me.  They know how important I am.  They look at my display as if they are reading a holy gospel.  They value me and my knowledge.  My owner? Well, he looks at me like I am a rock, a burden that he is forced to carry around. I am the unwanted younger brother that he has to take everywhere.

Why does he have to think of me that way? It hurts my feelings. I am just trying to do my job. I am trying to work with him to keep him healthy.  I know that it can be tedious. It’s not picnic for me either. I mean, I have to be on all of the time! There is no time when I can be just a little less accurate. I have to bring my A-game every time we meet.  Its exhausting but I don’t get any praise or appreciation.

He just doesn’t get it and some times I get mad as well and when I do, I get even in my own way.  When he just grumpily and shoves a strip in me and expects me to instantly produce results, I come back and tell him “Error 4”.  Oh does that get his goat! He has to retest and take his time to treat me a little nicer–getting all of his blood just so on the test strip so that I will read it for him.  After he has done that, I reward him by saying “HI” but he doesn’t often see the humor in that one. I don’t understand why.  Isn’t it important to be friendly now and then? Perhaps if he could be a little nicer, we could work together a bit better and I wouldn’t have to resort to cheap jibes.

Maybe one day he will get it. One day he might understand how important I am! Oh well, at least he takes me most places. I usually only hear about the spots that we go to from the inside of a pocket but at least I get to tag along.  It’s not easy being me.  I guess it’s not easy being him either, but I still say, “work with me dude! It will make things so much easier!”  Darn! I shouldn’t have said that so loud, here comes another check. Back to work!

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Beam me over Scottie!

The other day I woke up to a text on my phone that read…

“Text me when you get up.”

It was my youngest son.   His site fallen out during the night. He had changed it only to have the second one kink. He had been vomiting, spilling ketones, and needed a bit of encouragement on the best way to move forward.  After injections and no sleep, he was slowly on the road to recovery by the time I was talking to him.

Having had a good sleep, I felt guilty. I wished that there had been some way to beam myself to his bedside and allow him some relief during the night. There isn’t. This is his life to deal with. I can’t do anything about it nor can I be much more than a voice at the end of the phone or a text message in the middle of the night. That is what happens when our babies grow up.

Despite that, my imagination began to wander.  With the world so vast and so many different time zones, wouldn’t it be wonderful if we could beam ourselves to another’s side? I am usually up for the day when my friends in the Pacific time zones are doing a 3am bg check. I could cover that. I could handle the lows and correct the highs that mess with their sleep.

What a relief that would be if you could just ask a trusted friend in another time zone to twitch their nose and be there for you or your child when you are just too exhausted to do it yourself.  Who would need CGMs or artificial pancreases? We could have a great network all over the world reaching out and helping each other!

Who am I kidding, technology and a cure would be much better.  Would you really want to wake up to find your friend standing over you in your bedroom? Your bed-head hairdo at its finest and a person that you only know through Facebook giving you juice or a report on your child’s failed site? Okay, it’s a little creepy. A cure would be best but it does create a lot of great imagery!

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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

Fourteen Years Since the 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

 

Test Strips Really Do Reproduce!

Test Strip Graveyard

The other day I was sweeping the floors and made a discovery that shocked me. There had been one test strip laying on the floor outside of our downstairs bathroom. I have swept around it for weeks. My son left in January and diabetes trash has served to be small reminders of him.

Yes, this shows a small bit of my psychosis. I am an empty-nester who still has issues. I read about it online the other day. It basically said I was crazy and trash is trash but I am not alone in my insanity. I still have part of a cartridge sitting in my car because…well its something my youngest son used. Under normal circumstances, it would have long been thrown away and I would have yelled at him for leaving his junk in my car.  He moved away and suddenly this stuff is a treasured possession. Yes, I definitely have issues.

I have not left his room as a shrine (another thing noted in this article on empty nest syndrome). He actually complained the last time he was here because the bed in his room now has a shiny duvet cover that he did not feel was manly. His brother’s bed covering is much more neutral.  I talk to both of my sons on a regular basis.  They are still a big part of my life but still  I do smile now when I come across a test strip…until the other day. On that day I got a little creeped out!

As I have admitted, I will sweep around one test strip. I will leave a dead soldier on the floor of his room and smile as I walk by it to feed the fish.  I am not a hoarder nor am I into dirt and garbage piling up.  Subtle reminders in places that ideally only I see are fine but let’s not go overboard (see no white jackets required at the moment!).  The other day, as I moved my Swifter throughout the small bit of floor space on our lower level, I was surprised to see that the one test strip that I had been watching now had a friend. There were two test strips that had somehow found their way out of a garbage can and onto our floor. This was not good. I put them in a spot together and knew that they would have to be returned to the trash that day.

I continued to clean and tidy but was again surprised to find test strip number three! Okay, I have admitted to not picking up ONE test strip but honestly I do not keep a bunch garbage around “just because” it reminds me of one child.  There is a limit even for me so how did I end up with three used test strips on my downstairs floor? I have not had anyone in the house testing their blood in over six weeks. I honestly clean my house and my floors on a regular basis. There is no way for me to now have THREE test strips in one small area.

There was only one reasonable answer.  Test strips, like dust bunnies really do reproduce! If only we could get the unused ones to do this, a lot of people would be able to test a lot more for a lot less money!

The test strips have all been moved to the garbage can.  The question remains however…will they really stay there this time?

 

Back Away from the Pump. It is NOT Your Toy.

At the end of August, my son got a new pump. We had been lovers of the Cozmo pump for over 10 years.  It physically hurt to have to put it away but with no warranty and a child living hundreds of miles away, it seemed best to make sure that he had a pump with a company still behind it if he had any issues.

We both shed a few tears as we put his beloved “Lean Green Pumping Machine” in a box and brought out his new pump.  When we sat down with his pump trainer, the trainer dealt with my son. Mom stayed in the background.  The trainer talked to him when going through how it worked. My son is too big for me to hover over his shoulder so again, I just sat back and let him learn. It felt a little strange.

After she left, he let me touch the remote bolus and test drive it a bit.  Soon though, it was hands off. I could touch it at night if he was out of range but that was it. I had not other reason to use it. If there was a change to be made, he did it. If there was a site change to be done, he did it.

As time went on, I used the pump less and less and I began to put it out of my mind. This was not my new toy to check out. It was his.  When we had a problem, I grabbed the manual to help him figure out where to go but again, I checked a book while he was six steps ahead of me navigating through the pump screen itself.

It has been five and a half months since my son started on his new pump and now I can barely figure out how to bolus him with it. On the other hand, he has no problem making corrections, adjustments or anything else required.

A few weeks ago, a friend and I were talking about new pumps for our kids. Her child is also holding strong to her Cozmo but they know that a new pump needs to happen sooner rather than later. I casually told the mother not to be concerned about the pump that her child goes on next because she won’t be playing with it. It will be her child’s pump and Mom doesn’t need to know how to operate it.

She thanked me.  We have been so used to handling everything, checking out each device, and learning on an ongoing basis that as parents, we can forget that this isn’t our disease. When our children were 2, 3 or 5, this was our disease no matter what anyone else said. Now that our children are 16, 17 or 20 we have very little input.  We have been relegated to the sidelines whether we wanted to be or not.  We can make suggestions. We can nag a little but our children are now young adults who will do what they feel is best. The only thing we can now hope for is that some of what we have taught them along the way has found a home in their own thought processes. It’s a huge step but we can all do this with one foot in front of the other…and back away from the pump. animas-vibe

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

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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But I’m not ready!

I began writing this blog to share with other people living with diabetes. I wanted people to know that they were not alone in what they were going through,  This has meant that I have shared feelings as they happened–both positive and negative, real and raw.   Today is no different.

I have been going through terrible Momma anxiety and guilt about my son choosing to move back with his father.  I know in my head why he made the move that he did. My head knows that it was not personal.  My head knows that this decision actually had very little to do with me and had everything to do with being 16 and wanting to stretch his wings.  My sister kindly explained things to me and helped me to understand the thought process of a teen in this position. My heart still feels bruised. It still wants to take everything personally but it’s not all about me.

“It’s not all about me” is a really difficult concept to grasp for a control freak like me.  I like to think that I am a lot less of a control freak than I once was….and the scary thing is that its true! Life has made me learn to let go a lot more than I once did but I am still far from perfect (but don’t tell anyone). I still would like more things to go my way on my schedule. Since my son felt that life should be on his schedule and his schedule said it was time to leave Mom, my compromise when it came to his diabetes care was that we talk each week about his readings, trends, and problems. This was fine and has worked well for the most part.

We have bumps.  I can get frustrated by what I see (or don’t see). I do my best to keep my words constructive.  Occasionally I fail.  Last week my son headed off to his first diabetes clinic without Mom in attendance.  Mom, being a bit of a control freak still, had contacted the clinic, reminded said son of the appointment, and forwarded his current basal pattern and carb to insulin ratios to the nurse.  On Monday the nurse educator contacted me with my son’s A1c, noted the changes she had made and let me know where she intended to take things from there.

Remember that I am a control freak.  Remember that I spent years going to that clinic and my level of diabetes knowledge was equal to or better than their’s in some cases.  When we attended, they asked me what was new in care techniques.  I was the person who brought in information on Lantus, the use of glucagon during illness as well as the latest in pump technology.  Each time I have gone into any of our clinics (the one he is now attending and the last one that he attended with me), the team was always interested to hear from me what was new in the realm of treatment.  I guess that means I have a huge ego to go with my controlling personality and that can’t be good.

Back to the new nurse (whom I have never met), she felt that my son would benefit from more work with a CDE and set up another appointment with an educator closer to his home.  He is off to see this person today.  The gamut of emotions I am experiencing is crazy.

The rational me says “its good that he is exposed to new ideas and new people.  Sometimes someone else saying the same thing that you have said can allow things to finally click.  He has a good knowledge of his care.  He will not easily be confused by someone else’s suggestions. This is a good thing.”

The emotional, still wounded momma in me says, “Whoa here!! We are doing okay thank you! I am very capable of teaching my son.  We may be apart in distance but I am still as involved as I can be.  I have managed to maintain excellent A1c’s in this child for 13+ years,  Even on his own, this A1c would be coveted by a lot of parents who have teens with diabetes. Why are you pushing me out of this?”

That’s what it boils down to isn’t it? A momma bear who has been so ferociously protective of her children for so many years feeling pushed away on all sides.  Is it really happening? No.  The nurse from my son’s clinic has kept me in the loop of what is happening and the changes that she made.  My son has kept me in the loop calling me and telling me what they talked about.  No one is pushing me out.  They are working to do the very best for my son.  They are exposing my son to new ideas.

Yes, he has already been exposed to some of the best minds in diabetes care in the world.  He knows that.  He has to be able to learn to say, “I know that already” or “thanks but this works for me because…” He is learning to speak for himself.  That is the goal for a parent–to raise strong, independent children. I told my boys to never be sheep.  Do what you feel is right. Never blindly follow.  My son knows that this also applies to his health care.  He also knows that everyone needs help now and again and that with knowledge comes power.

He is growing. He is learning. My role is changing and it is changing quickly.  That is painful.  That is my problem.  I have to adjust.  I have to remember that it’s not about me. It’s not personal. Its life. Its change.  It’s what happens when our children grow up.

For those of you who are also dealing with these issues…you are not alone. For those who have gone before me, thank you for reminding me that this too shall pass. Change is important in all of our lives. It can be terribly difficult but change is what makes the world go around.

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