Swept away and retired to a desk

Today’s prompt for Diabetes Blog Week asks what is that one thing that we are still clinging on to that we need to let go? What in our diabetes closet needs to be cleaned out?

Honestly, I was going to use a wildcard for this one. I thought it didn’t apply to me any longer.  Diabetes does not live with my full time any more so what could I possibly need to junk out? We cleaned out most of my son’s diabetes supplies when he moved.  Anything left here he needs when he visits. Obviously this was a topic that I was going to have to give a miss. Or maybe not….

sweeping up
Sweeping out the old

There is something that I have been working on for…cough, cough, almost….two…cough…years.  It is something that I need to let go of, clean out, sweep away. My challenge is to sweep away that need to know all and me hands on 100% of the time.  It is now physically impossible and thinking otherwise is emotionally draining.

I have to adjust to the role of no longer being that person in charge. Learning my new role as the person standing in the office listening to what is going on in the trenches but removed from the actual events is a huge challenge.

I no longer have to wake up at various times during the night to test my son. That has its own guilt.  I still wake up through the night out of habit but as time has gone on, I no longer wake in a panic wondering if he is okay and if he is testing.

I have gotten better at having him text me readings.  Originally I wanted to know every reading.  I would stay up to all hours just so that we could talk and he could tell me what his readings had been like.  That didn’t work. He did his best to be busy when I wanted to call and talk.  I had to get rid of that need to know. I had to learn that it was now truly his disease.

We still talk daily.  I don’t know his readings from day to day.  He calls me when he has a problem. We troubleshoot issues together.  I still work on being okay with the fact that I don’t know his A1c.  I still struggle with not being able to hook him up to the technology that I want him to use.  Sweeping out the DMomma who is hands on and replacing her with the DMomma who is just there to help out when things get a little messy or he needs a break has truly been my biggest challenge.

As I have have been swept out of the trenches, I found myself struggling to understand my place on the sidelines.  I worried that I had not prepared him enough. I worried that I would not matter any more. I worried that I would no longer have a role in that community of diabetes parents that had been my home for so many years.

Just like cleaning our house can give you a new perspective, cleaning out my role as a DMomma did as well.  I have seen my son thrive on his own. I have seen him put to use what he has been taught and develop his own confidence.  Standing back has allowed me a new role in the diabetes community and in my son’s life…and its not that bad!

Sorry but its private

Day two of Dblog Week asks what we keep private. What is it that is off limits for sharing with our readers or maybe even family and friends? What will you never read about on these pages?

This is actually an interesting topic.  Once upon a time, there was almost nothing that you would not read on my blog pages. I was an open book in part because I never thought anyone else would read what I had to say.  It was my personal journal, sharing my most raw emotions. As friends and strangers began to read, things began to change.

I no longer write when emotionally charged. I still write posts with emotional attachments but I try to wait, write, re-write, wait, and then post after the fact. I want people to understand some of what I deal with as a parent of a child with diabetes but I don’t want them to lose the point in a sea of anger or frustration.

I no longer write my son’s name and very rarely the names of anyone around me out of respect for their privacy.  My son spent a lot of his early life with diabetes in the spotlight.  I wanted people to know more about the disease but I never considered that he’d preferred anonymity.  He did.  At 16, he laid down the law.  He wanted his privacy. He did not want to featured in diabetes related campaigns or any other displays.  I have learned to honour that.

Over time my life has changed and so too have my blog posts.  I now seek out topics that advocate and highlight issues of awareness.  Our life with diabetes has changed. It no longer consumes me 24/7.  It is simply a nagging thought in my head but a burden for my son to now carry almost solely on his own.  I can no longer moan about sleepless nights but I will still share my feelings of guilt at being able to sleep.

I will still share many emotions and experiences in my blog posts. I try to keep them real and from the heart.  Yes, there are a few things that you will never read about.  There are a few things that family and friends will never understand either but the important things that educate, advocate and raise awareness will always be shared.

Private!
Do not enter

 

 

He’s Got This

calling momIts 7am. My phone rings.

“Mom, what is the pump log?”

“It is probably a sheet for you to put all of your pump information as well as everything you ate and bolused for the past 5 days.”

“But I put that on the other sheet.”

“They send out two sheets. One is for those on injections to fill out and one is for pumpers.  It doesn’t matter which sheet you used as long as you provide them with all of the information that they need.”

“Okay.”

I hung up and began my day.  My son was heading off to what could be his last appointment at his diabetes clinic.  He will be 18 at his next appointment and will most likely be transitioning to adult care. Oddly, this was not the first appointment that he has gone to without me but he seemed to want to get this one right. I was impressed.

At 10am I got my second call…”Mom, can you go into the pump manual and figure out where I find my Insulin Sensitivity?”

I dug around in the closet, pulled out the pump box, found the manual and began searching through pages.  I gave him the instructions and took a guess at the answer.  I was wrong.  I guess I am a bit more out of the loop than I thought.

I wished him luck and he continued on with his appointments.

Later that day I asked him how things went.  He told me that he is done with the clinic. They will refer him to something a bit closer to home for all subsequent appointments. I asked if he had been referred to a new doctor. He said no, his doctor was keeping him on for another year.

He was looking forward to a new doctor so I asked him how this appointment went. He said it was great! It was short (could that be because he actually was prepared, looked like he knew what he was doing and they didn’t have to pry answers out of him??).  They were both happy.  There were no A1c results because he only went to get his blood work done the day before his appointment but he would live for another six months so all was good.

The day was an interesting experience for me as the mother of a child with Type 1 diabetes.  My son was/is independent in his daily care and now in his medical care as well.  Despite that, he knows that he always has a someone who will help him whenever he calls.  I no longer hover with advice or suggestions (well not a lot) but he knows that if he presses my number, I will help no matter what.  That is a very good feeling.

 

What? No Blood? No Tears? What happened?

Wow! Did that really happen? Was it really that painless? Did I miss something? Why am I not ready to cry in frustration? Are we making progress?

The other day, I sat down with our notebook. Its the one that says what sort of workout my son did, how intense it was and what we did about diabetes care as well as what sort of results were had. I asked for his meter and I plugged it into my iPod.  It had only been a few days since I had done this. I was still a little nervous about what I would find. 

Despite the fact that bg level reviews are supposed to be a time for discussion and learning, they normally are times when I cringe and want to cry while my son glazes over and comes up with strange excuses for missed readings. This time was very different!

I noted the readings.  We talked about foods before exercise. We talked about foods after exercise. He talked about how he felt exercising with various foods in his system.  We looked at missed readings and high readings. He was quick to point out his own errors and state that he needed to improve to get back to that guy he had been the week before.

I told him he had done really well. I was impressed.  He walked away with his own definition of what needed to be done and I did a small bit of tweaking based on my own feelings.  The biggest shock was the feelings and the atmosphere when the process was over…It was great! There was peace.

I felt good. I was happy to see readings and an interest. He felt pretty happy with things in general. He had seen decent numbers and had a strategy for readings that were a little off.  There was no blood spilt.  There were no tears.  Could we be making progress??

He goes away in a week and will be on his own for his diabetes care. This is normally a time when he applies the motto “When the cat’s away, the mouse will play!” or his his case when the mouse is away from the cat but you get the idea! I have been reading Moira McCarthy’s book as often as I can.(Blog review to come later!) I think I have a better grasp of will most likely happen while he is gone and why.  I think I may be better able to handle it when he comes back…well maybe…well I will try anyway! For now, I will just savor a really nice sharing of diabetes information with my son. drama

Life is Short Laundry is Eternal: Book Review

laundry book
Note all of my bookmarks…a sign of a good read!

This book is NOTHING like what I expected. What did I expect? I don’t know but I should have been warned of a few things before starting.

First I should have been warned NOT to read this book in public.  There are too many times that Scott’s writing evokes either tears or laughter or both.  This can be embarrassing and hard to explain when reading in public places. Second, I should have been warned that this dichotomy of emotions would start within the first 20 pages and continue for the entire book!

Because this book came in a package with a diabetes how-to book, I very much expected a book about diabetes.  I was wrong.  Diabetes is huge because his daughter has diabetes but diabetes is secondary to the book’s wisdom and insight.  I quickly went from…what sort of diabetes peeps should read this? To…my cousin and her husband should read this because they live this same life and I bet they can relate! To…my sons should read this. To…everyone should read this.

No this isn’t a life altering book with new and shocking revelations. Its a simple book about love presented in an honest and touching way.  Scott writes about his mother’s support, his love for his siblings, the relationship with his wife, and of course the developing relationship with his children from a unique perspective–that of a stay at home dad. In this day and age, stay at home moms can be the brunt of ridicule   What do they really do anyway besides watch afternoon television?  The stereotype for a stay at home dad is a thousand times worse. Scott breaks through all of those barriers and shows how important the roles of parents are–whether they are the ones working in the home or the ones considered the wage earners.  He shows the incredible value of both partners and how vital it is that they work to compliment each other.

As I have written before, I can judge how good a book is by how many pieces of paper are torn and left as bookmarks to refer back to or how many pages are now marked with highlighter.  This book sees a lot of both.

Scott’s reaction to an examination of his wife during their first prenatal visit upon finding out they were expecting their first child is both honest and hilarious…”I remember looking at Kelly and thinking, Fuck, getting her pregnant is ruining all of the fun that boobs bring to my life!” and he manages to keep this tone up for the entire book. We empathize when he drops his son or loses him in a store. We take to heart the amazing advice he provides on page 81 to “keep moving forward, ask for help when you need it, never give up, and scream at the top of your lungs once in a while, things should turn out fine almost every time. Maybe not as you pictured…but pretty damn good.”

My biggest mistake when reading this book was when I took it to my doctor’s office to read before my appointment. I was at the point when Scott and Kelly’s daughter Arden was diagnosed with diabetes. I always have a hard time with diagnosis stories.  The fact that this little girl was diagnosed at 2 years old, the same age as my own son was, should have told me to keep the book in my purse and NOT read it in public but I didn’t heed the warning signs. Instead, I fought back the tears and pretended that I was there because of a cold.  So much of what he wrote could have been written by me.

“She was only two. Do little kids get sick like this when they’re two?” was so similar to the feelings that I had when my son was diagnosed. It couldn’t be that serious–could it? He was so small. Scott talks about feelings of “dread, anger, shame, and more pressure to be perfect than I had ever experienced” and I knew exactly where he was coming from.

Reading, “I wish that I could tell you that it only took a few days, weeks, or months to shake the feeling that type 1 diabetes brought to me, but in all honesty, it was much longer.  I didn’t begin to feel normal again for two years, and the interim was overflowing with new, frightening and potentially defeating daily situations.” Fit perfectly with the advice I had recently given people at a webinar.

Is this the book to read if you want to learn how to cope with life with diabetes? Perhaps it isn’t.  Diabetes is not the focus of this book, living life is! Scott’s open and frank discussion about life, love and making the most of every memory is advice of value to all of us.  This book should be read by everyone who loves to laugh and values their family. His unique perspective and wonderful humor made this book a pure pleasure to read and a book that must be shared with everyone in your life–young or older.

Baby steps forward perhaps?

Sunday morning brought a vision that shocked me to the core…my son weighing his cereal! I was tempted to take a picture but I didn’t want to scare him or prevent him from doing this again. scale

Now that may not seem to be a life altering event to many.  It is something he has been told to do on a number of occasions. I have even shown him how his eyeball has been seriously off but telling him and seeing it happen are two very, very, very different things! There was no harping. There was no “Where is the scale?”  He actually did this on his own! Did it result in perfect bg levels? I have no idea.  Honestly, days later I remain so shocked by this occurrence that I haven’t checked. I am just hopeful that he is learning.

That is, I was hopeful until 3am this morning when he bg level was dropping after a strenuous workout the night before.  At that point I was just irked that he hadn’t listened to me.  I had told him to reduce his basal after exercise. I was positive that he hadn’t.  Once again, I was up for an hour in the middle of the night after being ill the day before.  Something was going to have to give!

I decided that if he hadn’t listened to me and caused me to lose sleep because of it, I would be taking back my sleep in the morning and he could deal with making his own breakfast and lunch (yes, my kid is spoiled and Mom cooks a hot breakfast and prepares his lunch daily despite his age)!

Well it sounded really good at 4am. It still sounded great in my mind at 7am when I was prepared to dish out my consequences to his ignoring my instructions. Unfortunately when he told me that he had done what I told him.  He exercised hours before bedtime and felt that he was okay (as per Mom’s instructions). My argument was gone.  He was learning. He had made a judgement call based on advice received from Dr. Mom and she was wrong. Darn!! I headed of to the kitchen to get breakfast.

We discussed the fact that exercise can have an impact up to 24 hours later.  More work to do but dare I hope that after all of these years, some of my lessons are starting to sink in??

Kids First Diabetes Second…The Language Chapter

I finally finished Leighann Calentine’s book Kids First Diabetes Second.  That is not to say that it was just so boring that it took me forever to read.  Its a reflection of the fact that I just don’t have enough me time to read, I was trying to read three books at once AND there were not enough 3am lows to add to my reading time.

The book was a bit of a surprise to me. I know that probably sounds rude but I was not expecting a lot.  I really didn’t know much about Leighann prior to this. Having read her blog on occasion, I knew that she was a fellow Diabetes Advocate but she had only been dealing with the D-monster for four years.

After living with diabetes for too many years, I am a bit more crass.  Would she be able to keep my interest? The answer was a resounding YES! She did a great job explaining things and then used a fabulous panel of experts to help fill in various areas.  The balance was brilliant and this is definitely a book that should be given to every newly diagnosed family at least.

In reading the book, I once again had a million little pieces of paper marking things that I wanted to write about in a review.  There are so many little bits of things that I thought were interesting that it’s going to take more than one blog post! Since I finished the book last night, I decided to start at one of the last sections that made me laugh and taught me a few things.

Kids First Diabetes Second dedicates an entire chapter to “The Language of Diabetes”.  We all know that diabetes has its own language.  It’s funny to watch the response of people when we look at our teen or our toddler and tell them “You had better be high Mister!”  We laugh at ourselves and know our kids love it when we ask them to give us “the finger”.

Kids First book review www.diabetesadvocacy.com

Batman Belt

These were found in the book as well as many more. Being a diabetes dinosaur, there were a lot of terms that I just didn’t know! I love the “Bateman Belt” which we used to just refer to as his pump pouch.  With kids using Spibelts and other pouches that can hold so much that the term had to be expanded.

Dia-beet-us

I laughed when I saw “diabeetus” and the fact that it causes an eye roll in many.  You know that that is how I pronounce the dreaded word right? I don’t know if its a Barb thing or perhaps Wilfred Brimley and I just have some sort of weird connection but to me the “diabeetees” thing sounds just as odd.

Flat-lining

I learned about Flat-lining and dreamed of it happening to my son one day.We don’t have a CGM so I can only imagine how great it must be to see.

Gusher

We have experienced both definitions of a gusher.  There was the time when blood spurted from his finger across the dining room table and landed in his brother’s soup. We have also had sites that poured out so much blood that I thought he may need a transfusion. My son that it was no big deal!

Old School

The term “Old school” killed me.  I am not that old…really…I think….but we don’t use Continous Glucose Monitors (read cost factor and access issues) and I love a paper log. While I am working really hard to move away from one, the idea of downloading pumps and meters? EEEK!! It is just so hard for me to do. (Actually, she states that the term refers to people who go back to these ways and not to those of us still stuck there)

SWAG

I remember learning about SWAG and YDMV when I first joined the CWD parents list.

This chapter was full of great stuff. At the end of it, the author notes the importance of not looking at numbers as “good” or “bad”.  That is so hard.  I never judge my son by his reading. We do have the debate on whether we have been effective pancreases or not.  We use readings as a learning tool now that he is a teen.  When he was younger, they were Mom’s grade and Mom’s responsibility.  “Mom failed you.” would be the guilt that ran through my head. I would not tell him that but it was how I would feel.

As Leighann and many before her have said, our children are so much more than a number. Readings are vital to their health and their well-being but they are just a tool. Its vital that we teach them that as well as helping them to flat-line!

Stay tuned for more great insights and commentaries on Leighann Calentine’s Kids First Diabetes Second….or go and order your own copy so you can find all of the good parts for yourself!

Please note that this post does contain affiliate links. If you purchase Kids First Diabetes Second by following our link, you will be supporting the continued work of this page. 

Hello, I am a pancreas

pancreas diabetes advocacy

I am up at all hours adjusting, dosing, and praying.  A good pancreas knows that lows occur when you least expect them. They usually happen at the most inopportune times. 

The other night a low blood glucose level arrived at 2:30 in the morning.  I woke up, had my usual fight with myself, got up and tested my son.  I was surprised to see him looking back at me in a questioning sort of way. 

“You are low.”

“Okay, I will go and grab the juice.” he said.

Wow, was this the start of something new? Him treating himself? Him waking on his own?  Dare I hope?

He came up with the juice, put it on the counter and headed off towards his room.

“Where are you going??”

“To bed.”

“I don’t think so. I am up and so are you.  Sit down and drink this.”

I let him go back to sleep after his juice.  No sense both of us being awake to retest.  Besides, he is the child, I am the pancreas. It’s my job to be up.

I headed back to bed once he was in range.  Crisis averted. Now time to unwind because I have to be up at 6am later that morning.  I had to take someone to the airport and then get a few other things done.  Of course, unwind time is not instant even for a pancreas.  I toss.  I turn.  My mind races. I say thank you for being woken up once again at just the right time.  Eventually, I fall asleep knowing that in a matter of hours the alarm will sound to begin another day.

We muddle through the next day.  In order to be a good pancreas, I need to see the results of my efforts. I ask my son to fill out his log book so we can see how things are going.

“There are no problems.”

“Gee thanks for the insight.  Now let me see what has been happening.”

Eventually, he begins to transfer the data onto good old paper for his mother to look at.  I know many people are saying just download the data onto your PC. Who uses a log book? Me, that’s who.  I have to “see the stuff” to make changes.

After a bit of grumbling we head to bed and I call out “Turn off that XBox and what was your last reading?”

“Its off.”

“Yes but what was your reading?”  Silence follows. I know he hasn’t checked yet.

“5.5 (99)”

I silently swear knowing, as a good pancreas does, that I will have to check on him soon because, despite the food in his belly, we are liable to see a repeat of the previous night’s low. 

I remain pretty good at my job of chasing the inevitable havoc wreaked on my son’s body by diabetes.  Sure enough, by 1:30 am I have forced myself out of bed and he is rock bottom low.  Darn, I hate being right!

This night however, my son does not wake up.  I feed him glucose tablets as he sleeps. I chew alongside him as if that will make things go down easier.  Unfortunately I slip a little as a pancreas.  In my sleep-deprived state, I cannot chew and count tablets.  I keep putting them in my child’s lips and he keeps eating unaware of how many we have used. I decide that more is better. He will complain in the morning about the “glucose tablet” hangover he has (a horrible taste in his mouth after too many tablets being fed to him the night before).

After an hour or more, his blood glucose level is on the rise and its safe for me to get a bit of rest.  This pancreas is weary.  The pay is poor.  The hours are atrocious but the benefit of my son being alive and healthy each morning make everything else worthwhile. 

Do you monitor blood glucose levels at night or do you have a continuous glucose monitor to help you along?

Error 5

error 5I looked over and my clock said 3:00am exactly. My mind said, “what are you doing awake?” My heart said, “Get your sorry butt out of bed and check your child’s blood sugar.” Stupid heart!

I keep lighting to a minimum during these checks because basically, I don’t want to wake myself up. I know how hard it is to get me back to sleep and I really don’t want to experience that sort of torture.  I found a meter on the kitchen table. I inserted a test strip, grabbed a lancing device and headed up the stairs to check my sleeping child’s blood.  

My mind was screaming, “You’ve only just fallen asleep so you KNOW he is going to be low! You are just never going to get any sleep tonight!”

I tried to ignore myself. I searched for an available finger and eventually wrestle it down. The blood flow was good that night. He must have been high. I waited for those five seconds to see…..Error 5.

What the…..???? What the heck is an “error 5” anyway? Back downstairs to get another test strip. Stupid meter. There was a tonne of blood. Did the diabetes gods not realize that this is just going to wake me up?? I did not need exercise at 3am! 

Okay, new test strip, back upstairs, wrestle finger again, lots of blood still, strip full and…..Error 5.  What the heck is a flippin’ Error 5??? I had had enough! Back downstairs I went for the third freaking time.

Can you tell that diabetes had done it and woken me up? Yep, I was awake and I was not taking this crap from this meter. I grabbed its identical, although slightly different colored twin, who was coded for the same test strip lot. I also grabbed the bottle of test strips. I would get a reading without doing my morning workout on the stairs!

Again, I found a hand as it stretches in its sleep.  I snafu’d it quickly and lanced it. The blood remained lovely and deep red. Strip sipped said blood and….Finally a reading of 7.5 (135)! Good enough for me. I didn’t need a perfect 7. I needed some sleep! 



Stupid diabetes!