Friday, November 8, 2013

Watching the Stumbles from a Distance

My son has been living with his father now for two full months. I still walk into his room and hope to find him there. I still find used test strips in strange locations. I still wake at night thinking that I should get up and test him but it is getting easier. I am slowly learning to adapt.

I keep in touch with both of my boys on a daily basis. I still worry about both of them.  I worry about the troubles that can find young men. I worry about many things that a parent will concern themselves with but I don’t obsess over any of it. I focus on how strong and independent they are. I pray that they always remember that I always want the very best for them.

My youngest son has been great about uploading his pump and touching base with me once a week to discuss his readings.  I have worked very hard never to freak out at the lack of testing. I don’t scream at him when I see high readings.  I normally just ask for more data. We discuss how different meters are functioning and talk about how to handle bad sites.

Stepping back and letting him make the decisions is very difficult.  It’s not because I am a control freak (although that has had its challenges), it’s because I am a Mom.  I want to protect my children from all ills. I failed him once by allowing him to get this disease. It has therefore been my job to protect him from the ravages of it.  That’s how a parent thinks.

Yesterday my son and I talked about his readings.  Once again I did not scream. I did not cry–but boy did I want to! I looked at the very few readings (maybe two per day) and saw none of them in range.  All readings were incredibly high (a low reading was 14 mmol or 252 mgdl).  My mind’s eye saw nothing but kidneys breaking down and eyes being damaged.  I quickly reined in my imagination and remembered the concept of metabolic memory.  I had prepared for this day.  I had kept him in excellent control his entire life.  The theory was that it would protect him through this time as he stumbled and found his own stride.

Instead of showing my obvious distress, I reminded my son that he felt bad when he was high. I asked him a few questions about his readings–”how long before you tested did you eat? So you were probably high for at least four hours previous.”  I then set to work. I was nervous about making sweeping changes with so little data but I had to do something! I upped his rates almost across the board.  I suggested that he might want to try to test a bit more so we could get a better idea of where we stand and help him to feel more like himself. I left it there.

This would have to be his decision. He had to decide to look after himself and make testing a priority again.  We had met for dinner a month ago when I was near the town that he now lives in.  I watched as he began to eat without testing. When I questioned him, he quickly took out the pump remote, tested and stated that he had forgotten because he was just so hungry.  Perhaps that was the case but the data I have been seeing suggests that he just often doesn’t bother to take the time to test most of the time.  He remembers to bolus however so I will be grateful for the things he does do.

I praised him for giving me the truth about high numbers. He was not using the pump remote for most readings so he could easily have lied about the 20 and 30s (360-540+) that I was seeing on his upload.  I said that it was great that he was showing me these.  We would work together to bring the readings more in range.

I have no illusions that things will change after this latest talk.  We had a similar one a few weeks ago.  That reality is what sets me on the edge of tears.  He will see his diabetes team next week. I pray that they will help him see sense but again, I doubt it. He is 16.  He knows best. He will have to learn on his own.  One day he will hopefully realize that I was trying to keep him healthy.

I have spent the past 13.5 years teaching him how to take care of himself. He has the tools.  Watching him not use them is heart-wrenching.  Many adults with diabetes and parents with older children tell me that this will pass. One day he will remember all that he was taught and will get himself back on track.  I do believe that–I have to.  The hard part is waiting for that to happen and in the meantime standing on the side lines watching, guiding, and praying that the scrapes are no more than that.

My son is a good kid–both of my children are.  They have never brought any trouble to my door. They have never been involved in any serious and dangerous behaviors that I know of.  They have always been quite respectful of me and as I said, all around great children.  Diabetes just adds that extra layer. It’s like that best friend that you really don’t want your kids to hang around with but they think he is the best thing going.  You know the dangers that he can cause for your child and they think that they have him under control.  Daily you pray that they are right…but it is terribly difficult.

I will continue to monitor my son’s long-time friend called diabetes. I will work to prevent as many scrapes as I can. I will be on the sidelines encouraging him to find his own stride and remembering that no matter what I have done in the past, this is his disease to learn to manage.
Liam Oct 1998

Thursday, November 7, 2013

Relationships...and more

I am still running a bit behind on my Diabetes Awareness Month Photos but here we go…
Relationships
DSC_1351
 
Truly the greatest gift that diabetes has brought us is the many amazing, enduring, and incredible relationships that it has brought into our lives.   I have been blessed to meet, talk to, and interact with people from all over the world who have become family to me in every sense of the word.
Family picture
 
 
 
  
 
 
Blue…
diabetesbluecircle
Blue to me is still new. I know, the blue circle has been around for ages, why don’t I get with the program?? I have no clue.  When my son was first diagnosed, advocates displayed a grey ribbon with a drop of blood. I have that logo tattooed on my body and its the image that I have in my mind when it comes to awareness. I like the concept of a blue circle.  I like the unity that it represents.  I appreciate the hope that it brings. One day I hope that it will instantly evoke the same images and feelings that the pink and yellow ribbons currently do.  
 

Tuesday, November 5, 2013

Diabetes Awareness Photo 5

Today's prompt is "advocate".
cwd orlando

My greatest honor as an advocate...being recognized at Friends For Life in Orlando with the Jeff Hitchcock Award. This was truly an amazing experience and it is wonderful to remain in the company of some of the world's most incredible advocates! 

Monday, November 4, 2013

Diabetes Photo Awareness Month

Where did the time go?? Somehow its November again and World Diabetes Day is looming. In honor of Diabetes Awareness Month, someone brilliantly thought of creating a "Photo a Day Prompt" (#dmpad) to create awareness and put faces to this horrible disease.  I am enjoying viewing the pictures that friends are posting and will begin posting my own as of today...
Past...
Liam Feb 2000
 
 
Two years old
 
 
 
 
 
Check
Liam testing in NYC
 
Testing while walking the streets of New York City.
 
 
 
 
 
Snacks
New Brunswick3 124
 
While we make sure that my son always has some for of glucose with him at all times, thanks to his insulin pump, he no longer worries about what or when he eats.  Snack times are a thing of the past and he now eats whenever hunger strikes.  Dairy Queen cakes remain a favorite snack!
 
 
 
 
Proud
IMG-20130413-00170
 
Of the quirky, humorous, down-to-earth, young man he has become.
 

Wednesday, October 16, 2013

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

Friday, October 11, 2013

Go Ahead and Complain

The other week I noticed nothing but customer service complaints filling my Facebook news feed. I was shocked and wondered if there was something in the wind.  It didn’t matter if someone was in a restaurant or dealing with their cell phone, they were having issues with horrific customer service. Sadly, this made me feel better when I began to have my own issues.

My son’s glucometer was having issues. It was eating batteries with astonishing speed. It had reached a point where he was no longer using it much to my dismay.  This is the meter that “talks” to his pump and gives me a true idea of his bg levels each week when we review things.

I called the customer support number and so began my run around. It appears, in a review of my situation later, that every crack that I could fall through I did! It was terribly frustrating but it also reminded me of a few things.

First is how important our pharmaceutical reps can be when we have problems.  After asking around and finding out that the service I was receiving was extremely unusual, I contacted my rep to see if she could be of any assistance.  She was horrified!  She apologized and was instantly looking for any and all help that she could get for me.  She did not stop until things were resolved.  I loved this lady before she became my son’s pump rep and now I truly love how she goes above and beyond for her customers.

Secondly was how those annoying spiels about how they are recording your conversations actually have a benefit to the customer. If you know exactly when you called and you feel that you were not treated properly, management can pull up the call and see what has happened.  In my case, I was treated fine, my issue just got lost in many transitions.  I have however received horrible service from a person on the phone with a different glucometer years ago.  The woman told me that the problem with my meter’s accuracy was related to me having dirty towels that my son was drying his hands on.  To say I was insulted was an understatement.  Later follow-up resolved that issue and the woman was re-educated.

Customer service is huge for those of us who’s lives, or children’s lives, depend on medical equipment.  Personally, I have met many people in the industry from all over North America.  They all genuinely want to help.  “Stuff” does happen.  Mistakes can be made but I have also learned that these same companies want to learn from their mistakes.  Let your reps know if you have issues.  They want to fix things for you. They want you to be healthy and satisfied with their products. That’s good for everyone.
complaints