Saturday, June 30, 2012

What's Your Favorite Number?

I once pondered my favorite number. Here is that post...

Everyone always asks you "what is your favorite number?"  For whatever reason, mine has always been six.  Today I realized how much I truly love that number.

Last night I tested my son at 2:30am.  I had changed his basal rate was I was expecting him to be either in range or high.  I was figuring on the high because we only seem to have readings fall into one category or the other--high or low. I was happy to see that he was 6mmol (100) and headed back to bed with a smile on my face.

This morning I began to think about numbers.  A high (anything over 12 in my world) causes a groan--hormones are raging or we miscalculated a bolus and I am a bad pancreas. A higher high--something over 16 (290) causes a slightly larger reaction--CRAP! What is wrong? Did we forget a bolus? Is the site in? Is the insulin bad? Is there air in the tubing? Will this correction work or should I inject? Crap!

There is also the dreaded non-number.  You know, when the meter simply says "HI" and you know that its not being friendly and wanting to strike up a conversation.  That is the reading that instantly gets the "Oh SH!#" response followed by the injection, ketone meter, jug of water, new site, new insulin and a lot more cursing wondering where I went wrong. I am now a colossal failure as a pancreas and have to get serious FAST.

On the other side of the coin, we have the number 5. I hate a five at night (90 for my American friends).  A five is a number that is close to six but far enough away that it could easily turn into a four...or less.  A five keeps me awake at night. I wonder which way it will go.  Will it make it up to my beloved six or will it tank to an unwanted two?

Fours are much more simplistic.  Add a small amount of sugar.  Its too close to call so I assume we are heading to a low.  Add a tablet or a bit of chocolate milk and rest assured that a crisis has been averted.  Well don't rest too soundly because I have been wrong before and he could still tank but its a start.

Threes are a two tiered panic.  The first three I see at night, I respond with "crap"! I have to be a bit awake and somehow get glucose into my child.  The second three (or worse) means I am wide awake and cursing the arrival of diabetes into our lives.  I then know that this will be a long night and I will be tortured by its memory long after he has climbed back up to my special number--six.

A two or one? Well they instantly put me in five star, full fledged, try not to panic, but What The...??? freak-out mode.  These numbers have me clambering for glucose and praying I don't need the glucagon.  These numbers have me watching the clock praying for the next reading to be so much better.

Yes, six is a wonderful number. Its peaceful.  It means I have been a good pancreas.  It has a serene sense to it.  Even a 6 in an A1c is fabulous.  I love six...don't you?

Friday, June 29, 2012

I don't remember...revisited

Here is another of my more popular posts. It came about after a conversation about my son's diabetes diagnosis....

Today was that day we all dread...the diabetes clinic day.  It started badly. We circled the hospital parking lot forever waiting and waiting for a spot to become vacant. My son rode shotgun and called out "Over there! There's a truck...too late.  Follow that little old lady, she's...nope someone got there first." This was our morning for close to 45 minutes. We were late for our appointment.

I was only mildly concerned because, like all good doctor's offices, I knew that this one would also be running behind.  I was right. The time spent looking for a parking spot was the time we otherwise would have spent sitting in the waiting room.

Relatively quickly, we were ushered into a room and waited for our numerous visitors.  The first person to come in and chat wanted to know how things were going at school.  Did we have any issues? Did we need her to call the school? No, we were doing alright there. The issues I had at school were not anything that would be fixed by a phone call. I needed my son to be a little more visible with his diabetes and be less self-conscious about testing. No one could fix that but us.

I was surprised to see my son's doctor arrive next.  I have been lucky to have had great doctors for my son since his diagnosis. She asked him how he was doing, asked about any illnesses and then turned to me for basal rates.  She looked at his age and asked him how long he had had diabetes for.  My son was stuck.

He looked back at her with a blank expression. I could tell that he was thinking, "What do you mean? I have always had diabetes. I can't remember when I was diagnosed. I can't remember my life before." Instead he just said "I don't know."

I piped up and said that it would be twelve years on Saturday.  She smiled and said that Mom never forgets.  How right she was. 

Ironically, on our drive to the hospital that morning, the conversation of my son's diagnosis came up.  He asked a few questions and I told him that he had escaped Death's grasp those many years ago.  He was rather silent and then said, "I am glad that I don't remember any of that." 

I smiled. I wish he remembered life before needles and testing. I wished he remembered a time when it hurt to lance his fingers--he told the nurse today that he no longer feels these things.  I hope for a tomorrow when he can look back and say "I used to have diabetes."  For now, I just remember how far we have come and continue to grateful every day that my small little boy didn't answer the door when Death came knocking almost twelve years ago.

Thursday, June 28, 2012

Mom You are Low!

Like any good family with diabetes living in the house, we have a rule...Never Waste Blood!  If you cut yourself, find a meter. Never waste an opportunity to see what your blood sugar levels are. 

Yesterday I was drying off our blender and was stabbed by one of its blade.  I could feel the piercing of my skin and began to squeeze my finger. Sure enough blood began to spill out of a small cut. 

I was on the phone but headed to my son's room and said "I need a meter. I am bleeding."  

He dropped the game he was playing, found a meter and grabbed a test strip. It was so odd to see him moving my finger to the meter the same way I have done with his for years. The role reversal was strangely sad. 

I continued my phone conversation and he said "You are low.  Its says you are 3.6(65)." 

I told him I couldn't be low and walked away.  The blood had dried up and I couldn't retest to prove to him the result was off. 

A few minutes later my son followed me into the kitchen where I was still on the phone. "Mom, you are low. You should be having an orange juice."

I told him that I felt fine. Shouldn't I feel different if I was low especially since I don't have diabetes? 

"Mom, everyone is different. Perhaps people without diabetes feel lows completely different than I do.  The meter says low. Low is low. You should have some orange juice." 

In the meantime from the other end of the phone I heard "or at least go and take a glucose tablet."  I was speaking to my mother and she seemed to be enjoying the irony of this conversation. 

I never did have any juice. The only "symptom" I had was a mild headache that had plagued me all day.  I am going with meter error but his concern and his no nonsense approach to my reading made me laugh but it also touched me that he was worried too...only in a house where diabetes lives!

Beginning tomorrow, I will be re-posting blog posts from the not too distant and distant past.  I hope you enjoy a stroll down memory lane with me.  I will be out of the country taking in a vacation like I have never had before so enjoy and I am sure I will have lots to blog about when I return!

Wednesday, June 27, 2012

High Urine...A D-Momma Rant

"Your A1c is good.  Your thyroid is fine. Your urine is high. Are you supposed to have a 24 hour urine collection done?" Our nurse asked us and both of us were unsure. 

I was still trying to process.  Did she say "your urine is high"?  High in what? That isn't good. Nothing is supposed to be high. Why was she asking about the 24 hour test? She did say high urine didn't she? 

My mind was reeling but I tried not to overly concern my son. He was less than worried. I was sure that there was not a problem but why did she say high? 

What was high? Isn't that protein levels? Isn't that bad.  Doesn't that indicate kidney issues? 

We have been dealing with diabetes for over 12 years but my son is only 14.  There could not be a problem. I had to be over-reacting.

His A1c's have always been great. There is no problem. It was just a fluke. 

My son said "Didn't Grandma die of kidney failure?" 

Yes, but I explained that his previous doctor did not feel it was something for us to be concerned about. 

Crap! I have tweeted. I have gone to my trusty CWD parents list and I have chatted with my peeps on Facebook. I am doing my best to go, "yep, it showed up but that doesn't mean anything." (and people are telling me that it does not mean a lot. Even the worse case it is still very treatable with modern medication).

But...Crap I hate this disease! I hate the stress. I hate the fact that I even have to consider that this could be a problem. My son is not yet 15 years old. His kidneys should be lovely, not constantly warding off potential danger because of Type 1 diabetes. 

Okay, that is vented. I will get it out of my head and pray that they don't call back looking for more urine either way. No matter what, at least we live in a time when doctors are able to be proactive about these things. 

Tuesday, June 26, 2012

June DSMA Blog Carnival

Today I decided it would be a great time to answer the DSMA Blog Carnival post before I start re-posting old blogs during my vacation.  I had long since forgotten what June's topic was so imagine my surprise when I read "Do you get nervous or stressed when you have to go to your endo/doc appointment? Why or why not? Be honest."
Today is our clinic appointment! Am I nervous? No.  Am I stressed? A little. I hate the waiting at the clinic. We had a great appointment last time we were there. We chatted with the doctor.  A nurse took my son's blood for his A1c and we were out of there. We were two happy people! 

The other problem with this appointment is of course my son is having a high at night that I just can't quite tweak. They may, or may not tell me to do the things that I am considering--adjust a carb to insulin ratio to cover the food he is eating. Look at upping a basal rate before he wakes to cut down on what looks like some growth hormones kicking his butt.  That is all well and fine but remember I said that I am going on vacation and so is he? 

My son's activity level could go up as he rides his quad daily and catches up with old friends.  This will mean that the change is basal rates is unnecessary.  Add to that the fact that he isn't "that" high, he has only woken up to two lows--in his life!, and he has had a few nights when the readings were okay.  I am thinking about adjusting the carb to insulin ratio, leaving the rest and texting from Ireland to see what's what.  

Why don't I get nervous? I don't get nervous because I don't look at them as the judge and jury.  I am.  I am my worst critic. I am much tougher on us than they are.  I know what I have to do. I know the A1c that I want to see. I have said time and time again, I was trained by the best.  Between an amazing doctor for the first 10 years of diabetes and the CWD Parents list, I have learned a lot and kept myself on top of the latest information. I am not intimidated because I often know as much as the staff. We are all the experts and when there is mutual respect there can be no need to be nervous. 

So what can they do for us? I am hoping that they will begin to work a lot more with my son.  We have had the alcohol discussion. I know that they have spoken about it at FFL teen sessions.  He needs to establish a relationship with his d-team and understand why its important for him to continue to be diligent with his care after he leaves their office. Our old doctor spoke directly to him, making him take charge. I am trying to step aside more often so that they can do this in our new setting as well. My son is quiet and private but this is not the place for that privacy.  

So are clinic appointments a source of stress for us? No.  They are a necessary evil but to date we are blessed by teams that respect us and work with us not against us. 

“This post is my June entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at

Monday, June 25, 2012

Twice in one year!

Last night I pulled out the log book we are keeping for our next d-clinic appointment (and I will probably try keeping it up for a while after).  I grabbed my son's meter and began to write down the results.  

After our chat the day before about missed tests, everything was in a row.  Tests were done. Life was looking good. Readings were everywhere of course. There were highs that I thought I had taken care of and there was a low...where in the world did that come from!!! There was a low at 1am. I never dealt with that low. My son and I had watched a movie together that night and gone to bed at the same time! The lights were out in his room at midnight but there is a 2.6(47) at one in the morning!!!

I yelled out to my son. "Get out here!!!" I was trying to breathe and focus.  He was low at one in the morning.  He didn't retest but he was okay. He was alive when I checked him at 3am.  He had woken up to a low??? He has only once in over twelve years of diabetes ever woke to a low. He woke to a low? 

My son came out of his room wondering what he had done wrong.  "I tested Mom.  You can see. I did all of my tests."

"Yes and you did one at 1am and you were low."

"I know and I was scared I would fall asleep before I could retest so I made sure that I had a really big glass of juice and followed it up with bread and jam.  I figured that that should keep me safe either way."

I wanted to cry.  I was so very happy that he had woken up on his own. How did I miss this? I never even woke to hear him get up! He had done it all on his own.  He was okay! 

"You did perfectly.  I am so impressed that you woke up!"

"Me too." he said in a sheepish voice. 

"Next time, wake me up.  I would have covered you in case you fell asleep. Don't ever deal with a low by yourself if it can be helped.  Its better to have someone watch your back just in case you do fall asleep. Lows can make you tired at the best of times. Just come in and get me.  I will gladly give you a hand but you did a great job.  I am really impressed and so glad that you woke up!" 

I could see the relief in his face and again it made me want to cry.  He was growing. He was learning.  He had a few more years to get this on his own but he was working towards it and its is such a heavy burden.  I cannot begin to imagine what it is like to know, to grow up and know that if you don't wake up at night when your body is low and if you don't treat it properly...well you might not wake up.  No child, no adult for that matter should have to live with that knowledge in the back of their head. 

I am so glad he woke but boy do I hate diabetes!  

Saturday, June 23, 2012

But its a LOT of work!

I know that I have said that I am not worried or fussing about my son's upcoming A1c...and I'm not.  Its past. There is nothing that can be done.  The next A1c will only have my control for 2 out of 3 months. He will be on his own for one month while he visits with family and friends. This is traditionally his worst A1c of the year. I can provide hands on help for two of those three months though.

I have been logging daily for our clinic appointment next week. Perhaps, my plan to stop logging for the past few months was a bit premature.  As I log, I find mistakes, errors, and missed tests.  There is a lot of information to learn from.  It is also a lot of work. 

I can understand why adults with diabetes get burnt out.  There is so much there. There is guilt. There is frustration.  I think that its time that I really do continue with this however but I also know that I will get bored; I will get busy; I will get frustrated.  How do I expect my son to do this later on in his life? 

I expect it because I have worked so hard for so long to teach him. I expect it because its what keeps him alive. All of my work has to make some difference. It has to sink in...but its a lot of work! The benefit is a healthy child. 

I guess that last line says it all. Its all about keeping him healthy.  I will try to keep the logging up after his appointment. I will attempt to micro manage, to teach, to breath and not freak out. The last part will be my biggest challenge. 

Its so easy to get frustrated at the same mistakes. On the upside, during this week, every day has brought a new and unique mistake! I will have to focus on that. Learning,not harping. Working together, not creating a widening gap.  Doing this for all of the right reasons and keeping communication lines open. Breathing and perhaps more wine...yeah I can do this!    

The team!

Thursday, June 21, 2012

New Mantra

Its that time of the year again...the time when I begin to stress because my son will be gone for two weeks and I will not be monitoring his care.  I thought this year would be better. He had been great about testing and bolusing. He still was terrible at changing sites but there was hope! Or so I thought...

I went through his meter the other day.  All of those times that I had asked him to test? He didn't.  I didn't scream. I didn't explode. I did remind him that he was coming exceptionally close to losing his beloved XBox but I was pretty calm on the outside. 

Inside I was a raving lunatic! Was he going to test at all while he was away? Would he care for himself at all when he had to? Will he ever get it? When will he understand that this is not about Mom harping on once again, its about his health and his LIFE!  

Not only are we days away from when my son will head off to spend time with his dad and family, but I am going away on vacation at the same another continent! 

I have been given a once in a lifetime, all expense trip to Ireland for a week. Diabetes, worries, and children are not about to hold me back but...well I will still worry (in between stops at pubs, castles and walks through the countryside!) 

I have contacted my cell phone carrier and set up my phone for use while I am away.  I have some texting abilities and a few minutes of calling in case some one has died and they want to call me but have extended use of my Blackberry Messenger.  This will allow me to keep in touch with both children but trouble shoot more when it comes to my youngest son.  

I told my boys this news and my youngest son said that I really didn't have to worry. When he goes away he tends to forget his phone more than he remembers it.  He heads out for the day and leave it behind in his shed. I really shouldn't be concerned because he probably will not be around to get my messages.  That did not go over well! 

I suggested that he remember his phone. He answer my messages and most importantly...take care of himself while I am away! 

I will not worry.  I will relax and enjoy a new country.

I will not worry. I will relax and enjoy a new country.

I will not worry.  I will relax and enjoy a new country.

Yes this is my new mantra!  I know I will be fine. I know I will do my very best when my son comes home to focus on the fact that he enjoyed his time away.  I will bite my tongue when I look at his meter. I will smile and praise the things he did right. I will breath and look for a glass of the imported liquor for the times that he failed. Ideally, I will not be an alcoholic. I will be a proud momma who also had a great vacation! 

Wednesday, June 20, 2012

Blood Evidence

It had to happen.  Its my fear every time we travel. I don't worry about it when we are at my mom's or in a hotel (actually I do worry about it in a hotel too. I worry that they think that a murder took place in our room and that they will send the police after us later.) I worry everywhere else. 

This past weekend just shows why.  We were at Larry's brother's house and I got a text on the back deck from my youngest son. They have a beautiful home but really there was no need to text me from one room to another. I knew by the ring tone exactly who it was and I said "he had better be dying."

The text read "I am wounded". I headed to see how wounded he really was.

When I got to my son's room, he showed me the site in his arm. It was soaked in blood. He was wounded. I took him in the bathroom where we changed the site and tried to stop the gusher from doing any damage to his clothes.  Eventually it stopped and all was fine. We were both glad he had seen it before it made a mess in the bed clothes! 

As I returned to the deck, I explained what had happened and how he was worried that he would spill blood all over their bedding. Larry's sister in law was not the least bit concerned but I knew that I would still have been mortified if we had left blood stains on her stuff. 

We continued to have a great weekend. The weather was wonderful and we spent most of our time on quads enjoying the scenery.  Monday arrived quickly and it was time to return home.  There was work to be and play time was over. 

I helped my son to tidy up his bed and get his stuff together. That's when we saw it...the blood stain on the sheet. We were not as lucky as we had thought. His site had bled before he noticed and had soaked through its bandaging.  
Blood and test strips! No doubt diabetes was here!

I took the sheet off and made sure that she was aware that there was a spot that needed to be treated. 

On the upside, she knew I didn't murder anyone in the room but still....I hate leaving blood evidence of our visits behind in people's homes. 

Tuesday, June 19, 2012

Kids First Diabetes Second...The Full Story

I have said before and I will say it again, I was pleasantly surprised by Leighann Calentine's new book Kids First Diabetes Second.  I had seriously wondered how someone relatively new to diabetes would handle an entire book...okay Leighann is not a newbie but sadly we have been on this block a few more years and as I have said, I have become crass over the years. As I said previously, she handled it fabulously! Again, I think this should definitely be given to all newly diagnosed, anyone struggling or just wanting to read a good "diabetes" book. 

The book begins with Leighann stating that after diagnosis, she went into "mommy mode" and took it "one meal at a time".  At that point she had me hooked. I felt a kinship.  I always tell the newly diagnosed that I live life four hours at at time...basically one meal at a time when we were on MDI. She also quotes a nurse who told her that she needed to give her daughter choices but taking care of diabetes was never a choice. I also live this one. My son could choose where his site went, which finger to lance or which color pump he wanted but he could not choose not to test, inject or ultimately to pump. The Calentine's may not have had as many years of the dia-beast as we had but they had learned well and were sharing great insights with Kids First Diabetes Second!

It was great to read about the support that "Rufus the Bear with Diabetes" still gives children. I remember when I first found Rufus. I remember sharing emails with his creator and finding a wonderful new friend in Carol Cramer. Her kindness still shines through in her bears. My son still has his Rufus that we bought about 10 years ago. I made him outfits.  We received pumps for him.  I had the pleasure of giving away a large number of Rufus and Ruby bears before they were given away here in Canada.  The letters of appreciation and the sense of community that the bears brought still brings a smile to my heart. 

The advice that Leighann has given to parents of children with diabetes in the chapter titled "Your Support System" are definitely words to live by and advice that all of us that live there would also give. 

I did have to laugh however when I read about the importance of changing a lancet.  This did show the gap in our diabetes "ages".  My son changes his lancet with the changing of clocks or when no matter how hard he squeezes his finger he can't get blood. Yes, lancets are cheap but we are lazy. We use the thinnest lancets but in over 12 years we have probably not bought a dozen boxes of lancets.  We used the multi-clicks for a bit (elevating our lancet purchases) but still, he rarely changed the drum.  Most of our diabetes pals are the same way. They too would laugh at the idea of actually changing a lancet after every use. 

I also found a difference in our children.  Quinn loves to share and is open about her diabetes. My son is reserved and would rather die than have to talk to someone about it. It has been a part of his life for longer than he can remember but he remains very private about diabetes.  He hates having to be involved in anything diabetes related. That is "mom's thing". Its his disease but he will keep it to himself thank you very much. I applaud those who are able to "wear it proudly" and I was able to gain some hope in reading about Naomi, a young adult who sounds like she was a lot like my son--diagnosed at two and very private until she was in college.

I loved reading about Linda Werts who planned to move away to school with her son when he graduated high school.  How many times did my d-parent friends and I joke that we would be the mother in the Robert Munch book "I'll Love You Forever"?  When my sons were younger, they were never leaving home. They would forever live in my house and my refrigerator. Now that they are older, they both have plans of their own that sadly do not include living with Mom or Mom being allowed to move away with them. When that time comes for my son with diabetes, I will rely on those who have gone before me to guide me and I will try not to be the Munch Mother...really...I'll try...I promise...

The use throughout Kids First Diabetes Second of short essays from many diabetes "experts"...those who have "been there, done that" was wonderful.  It gave a perspective from parents who have journeyed where you have yet to tread, adults who have lived the lives of our children, and more.  These snippets truly rounded out a very good diabetes resource.  

We use different technologies.  Our children are different ages. I wondered how she avoided that slap in the face that many of us feel when we see our child "attached" to something that keeps them alive (aka an insulin pump).  For many of us, that is the one downside we faced as we journeyed down the pumping road--seeing "diabetes" by seeing our children hooked to a device,  attached to something that will keep them alive.  Despite those few differences, we are both mothers of children with diabetes. We are advocates for our children. We share our lives with others in hopes of helping them get through.  We are part of a club that no one wants to belong to but are constantly amazed by the strength of those who are invited to join.  

Leighann Calentine and her family have shown a lot of strength in their sharing and their activities. It shows throughout this book. Great job Leighann...and as for the rest of you? Go order the book for Pete's sake! Its even available for your eReader

Saturday, June 16, 2012

From a Father to Two Fathers

In honor of Fathers Day, The Diabetes Dad recently wrote an open letter to the two fathers in the US who are hoping to win the next presidential election in that country. Being Canadian and not overly into politics beyond asking for various diabetes related expenditures, I was shocked by what I read. I was also impressed that this father of two children with diabetes had so eloquently challenged these other two fathers to take a moment and make a difference to their constituent living with diabetes.

Tom Karlya, The Diabetes Dad, astounded me when he wrote that "the upcoming election for president may well cost over two BILLION dollars." He further noted that after all that spending, the only thing that will be there to show for it is that one of those fathers will have a home at 16 Pennsylvania Avenue in Washington for four years.  He told that them with .1% of that money (which is a staggering $1million), the cost of perhaps one national TV commercial, the Diabetes Research Institute could be that much closer to a cure for people with Type 1 diabetes.

I invite you to read the letter.  The math will astound you. The extravagant US election spending will terrify you but the point is well made.  They could chose to make a difference and help others for such a comparatively small amount of money.

After reading this, I was curious to see what spending was like here in Canada. We know that if we could tap into some of the federal MP's controversial spending, we would have insulin pumps for every person with diabetes who wanted one and schools with adequate funding to keep our children with diabetes safe.

That is what happens when they get into office but what do the fathers who are currently leading our major federal parties spend to get themselves in office? In our case, much less than their US counterparts.  Elections Canada has capped spending at $21million.  I know that the DRI would not turn down a $21,000 donation to help fund a cure any more than the JDRF or CDA would. They would also not turn down the money spent on one national TV ad during a campaign season.  

Its sad that our leaders and those in high profile politics do not necessarily think that way. I hope that Tom's letter reaches the American fathers to whom his letter is directed. I would love to see them take up his challenge and help to fund a legacy rather than just worry about getting a moving truck.  

Friday, June 15, 2012

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. I had read her blog on occasion. I knew that she was also a Diabetes Advocate but she had only been dealing with the D-monster for four years.  I have been at this for over twelve and am now 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 its 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. We live 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".  

These were found in the book as well as many more and it turns out that 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.  Now kids can put so much more in them that the term had to be expanded. 

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 a Canadian thing.  Perhaps Wilfred Brimley and I just have some sort of weird connection but to me the "diabeetees" thing sounds just as odd. 

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. 

We have experienced both definitions of a gusher.  We have seen blood spurt from his finger across the dining room table into his brother's soup.  We have also had sites that poured out so much blood I was beginning to think he may need a transfusion but told my son that it was no big deal! 

The term "Old school" killed me.  I am not that old...really...I think....but we don't use CGM (read cost factor and access issues) and I love a paper log. I am working really hard to move away from one but 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)  

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 pre-order your own copy so you can find all of the good parts for yourself! 

Thursday, June 14, 2012

A1c Zen

I realized last night that we have a diabetes clinic appointment next week. We will get our dreaded A1c at that point. I have just finished reading the section in Leighann Calentine's book Kids First Diabetes Second where she talks about people thinking of the A1c as a report card on what sort of a pancreas you have been during the past 3 months and realized that this A1c was different. 

I do normally look at it as a measure of how well I have taken care of my son...until now.  For some reason, in looking towards the impending results of this blood test, I am seeing things very differently.

My son is now a teen.  He will begin grade 10 in the fall. We have been working towards his own diabetes independence for years thanks to the amazing doctor who looked after him for the first 10 years after diagnosis. I still bolus when he hands me his pump. I still remind him to test and I hover over him threatening to insert a site in very uncomfortable spots when I know that he has gone days past a scheduled site change, but I am also allowing him to make a few of his own mistakes.

I thought about his basal patterns and realized that I am not making as many changes lately as I normally would have been.  I am also not doing every part of his care.  We have seen highs and have known that it was a bad site--No sense changing anything for that one.  We have seen lows and known that it was that day of biking and then mowing the lawn that caused that one.  Since he is going to be more active for the summer, that low warranted a change.

There have been more issues that have not warranted a change though.  That is my point.  We are looking at highs and the occasional low and going, "Oh yeah, that was a mistake here."  or "Oh yeah, I guess there was more fat in that meal than expected." We (read that he) are learning.
Thanks Reyna at Beta Buddies for the cool report card graphic!

I have no idea what this A1c will look like. I expect it to be "okay".  It will not be as low as Mom likes. It will be low enough for the diabetes team to go "oh wow! You are doing excellent." but personally they have pretty low standards. It will not be a double digit. It will most likely not even be overly high but it will be higher than I like (I am a seven person. I love to be under that 7% mentioned in the DCCT). 

Call me in three months and this Zen moment will most likely be gone. I will be freaking out at the results. I will be hovering over my son more and telling him we have to get together a lot more on this but for today...I am good. Its a number. It just shows that we are learning and working towards my son taking over his disease with a large arsenal of skills one day in the near future.

Wednesday, June 13, 2012

The Death of a Calculator

Its been in the making for awhile but today it was official.  Tragedy has once again struck our house.

Our beloved calculator, given to us by our great friend Stacey and used daily for probably five or more years has died.  I was crushed.  This calculator sat by our scale in the kitchen.  It had been calculating carbs for us for years. 

Suddenly I remembered that we had another one just like it!I rushed downstairs and into my office to check the second calculator.  You can understand why the tears began to fall when I pressed the button to turn this one on and once was gone too!

Yes, I can go out and buy another calculator. Yes, because diabetes lives in our house I will have to go and buy another calculator or start using the one on my phone more but that is not the point. These calculators were cool!

If you look closely they have a life preserver and a little floating glucagon kit inside. Where can you get something as cool as that? Only from a friend of a child with diabetes.

The sun still shines.  The calculator on my phone was able to figure out my son's breakfast carbs but meals will never be the same any more.  The great "fun" factor of our cool little calculator is gone.  Carb counting will now be a little more routine but I guess that is just part of the circle of electronics life.

RIP my calculator pals and thanks Stacey for the years of fun with them while they lasted!

Monday, June 11, 2012

A Mothers Anthem

As I have mentioned many times, about a year after my son's diagnosis with diabetes I joined the world of the Internet and found an amazing group of people in Jeff Hitchcock's Children with Diabetes Parents online mailing list.  In those days there was no Facebook or Twitter. I had no other support but this group of people that I would email with and they would reply.  Over the years many of these online names have become some of my closest friends who have been there for me, been there with me, and kept me going when I wasn't sure if I could do it. 

This was (and is) a very diverse group.  There were people with strong opinions, people with wide shoulders and people who were incredibly talented at putting their words to paper. Linda Kaniasty was one of those talented people who put the feelings of many parents into words.  Her poem, A Mother's Anthem has been a fixture on one of the pages of my website for years. 

Recently it has been used to created a film.  Sucscita Films took this poem and gave it a face for "Children with Diabetes UK." and their national diabetes week.  The poem was powerful.  The video will reduce you to tears.  Each time I watch it, more memories return and more tears flow. 

A wonderful friend that I met thanks to the online parents list, Jen summed up our feelings best when she said "God, I'd forgotten about the bruises. She's been pumping for so long that I'd forgotten about the bruised arms, and wondering what other parents thought of those bruises....This was harder to watch than the poem was to read years ago because its in their eyes.  That thing that we keep just barely tucked away beneath the surface, so others don't see our pain.  the pain that we even fool ourselves into forgetting about, because we're so good at being strong.  But it takes something as simple as this to bring it right back up to the surface."

I remember the bruises and thinking that people must believe I abuse him when I am actually fighting to keep him alive. I remember the fights to get him to eat because there was insulin in his system that had to be fed.  I remember crying in the dark at night after my children were gone to sleep. I didn't want them to see me but it hurt to know that no matter what I did, I would NEVER be able to "fix" this. I couldn't "make it better". 

Thank you to Linda for this powerful poem and thank you to the people at Children with Diabetes UK for having the courage to put their pain to video and show the world what we all feel as mothers--as parents.

Sunday, June 10, 2012

Confessions of a Control Freak who has fought Diabetes

I have been lucky enough to get a copy of Leighann Calentine's new book "Kids First, Diabetes Second".  I am almost through reading the book and so far am very impressed but I will tell you all about it later. What sent me off to my computer was a line in which she said that for her, she learned to cope with diabetes by taking back control. 

When I finished reading the section in question, I agreed with her whole heartedly but being me, my mind immediately moved off onto another tangent with those few words.  I have always said that diabetes taught me how much control I don't have.

I am one of those people who likes to plan ahead. Prior to diabetes, I could give you our ten year financial plan, our plan for our next five summer vacations and more.  It was all about the planning and controlling the world around me.  Larry would argue that I am still like that and in some ways I am but in a lot more ways, I am not.

Diabetes has taught me that despite my best efforts, things do not always go as I want them to. There have been the active days that I swore would result in lows so I reduced his night time basal rate only to be chasing highs for the rest of the night. Why? Because the diabetes gods made it so! Okay or more likely there was air in his tubing, a site that was going bad, a bolus calculating error...well you get the idea. 

I have planned to enjoy a good night's rest only to find my son's tubing was dislodged during the night and he is up vomiting with ketones.  I have equally planned on enjoying a night's sleep only to be kept up with a low that we never saw coming.

We have planned for sleepovers that have ended because of highs that he could not get rid of on his own.  There have been celebratory meals at McDonald's at the end of swimming lessons that left us all exhausted because my son had such a bad low that it took us every low food in my bag and half of someone else's pop to bring back up.

There have been days when I have been prepared for diabetes to send me its worst...only to have a wonderful day. 

Diabetes keeps me on my toes.  As Leighnann says, for the first year, my life was about trying to gain some sort of control of our lives. Our world became very regimented. I functioned. I kept my son alive.  Meals were set.  There was no variation but over time, I took some of that control back.  I baked again.  I allowed him different foods at snack times. We ventured out of our safe zone.  Diabetes still kept us (and keeps us) on our toes but it has taught me a lot about what I can control and what I can't.  It has also taught me what is important to control versus what is better left to happen when it happens.
My version what the Diabetes looks like!

Does diabetes control our lives now? No. Do I control our lives now? Heck no! I am now the mother of two teen aged sons, one who is heading off into the adult world in a matter of weeks...all my carefully guarded control is flying out of the window faster than I can hold on. Its not a bad just is.  We all cringe when someone asks if your diabetes is "under control" but we also recognize that we do have to take back some control of our lives and work to live with diabetes rather than living all about diabetes.

Saturday, June 9, 2012

The Fair and The Eye Roll

It was once again time for my youngest son to join his peers and do their annual end of the year trip to the the rain! At the end of each school year group of kids that he knows get together, head off to the local fair grounds, eat, go and rides and have fun for as long as their bodies can handle it. 

Last year I was a little freaked. I didn't know the kids that well. My son was alone in a city! We had previously lived in a rural setting for all of his life.  He is  terribly private about his diabetes and I worried how well he would manage himself with friends around.

Somehow a year has passed and once again my son informed me that his group of pals were heading out to the fair again.  They were meeting at a friend's house at 4:30pm.  I didn't expect them to be finished until late that night. I was right.

Before he left the house, we went through the list...
Glucometer? Check.
Test strips?  Check.
Lancet? Check.
Glucose tablets? Check. Hold on, let me fill those for you...followed by "Mom" and an eye roll.
Cell phone? Check.

As we got into the car he also looked for the most important! He was good to go.

We arrived at his friend's house and as he was leaving the car I was yelling out instructions.  He had closed the door and I was rolling down the window...."Don't forget to set a lower temporary basal! You will be doing a lot of walking." 

Again, with the eye roll as he hurried to the door hoping to get inside and away from my hovering sooner rather than later.

When he got home we went over his testing.  "What do you mean you only tested three time?"

"Mom, I wasn't gone that long."

"You were gone seven hours!"

"Yeah, Mom, that is one test every two hours AND I tested before I did any major walking. I didn't eat and I was okay."

I couldn't argue. He was right. Testing every two hours is something that I really can't complain about.  The fact that he stayed out and had fun? Well that is the absolute most important part but it is still hard to let go...even if he seems to be doing okay when he has to.

Friday, June 8, 2012

Verio IQ..our opinion

At the beginning of the school year, our diabetes nurse suggested that we try out the Verio IQ meter.  She thought it was really "neat" and very teen friendly. I watched and watched to see if it was going to be given away free with test strips.  I know how many strips we use in a month so I was hoping that there would be some sort of an offer made...but there wasn't.

I had a contact with LifeScan that I could ask for a sample of the meter. I have known him for years and he knows that we test a LOT but I had long since lost his contact information despite seeing him only a few months before.  I really have to be more organized!

I was forced to listen to stories and drool at the thought of playing with a new toy...until the George Canyon Heroes Tour! My luck changed! LifeScan was displaying "OUR" meter!! Better still, they were giving them away! I happily went away with a new white Verio IQ meter and of course the rep's business card to be able to keep in contact.

My son, as I have mentioned, has inherited my love of new gadgets. Its the benefit of life with diabetes--cool new stuff! He began using it sooner than me and based on the fact that it is now his meter of choice when he is home, I am thinking that he likes it.

The first week of use was a learning curve for us.  Part of the problem is my son is male--in my experience this means that he does not believe in reading directions. He will figure it out on his own.  This meant that for at least a week, we had no idea how to turn off the meter and he would let it go off on its own causing the battery to die very quickly.

I finally decided to check out the meter myself.  Note to self, 3am is not the time to try out a new meter. Joel had shown me the amazing light for this meter so I was certain that I could test completely in the dark.  I could open the test strip canister without a light on in the room. I could use the light of the meter to insert the strip, to lance my son's finger and get the exact right amount of blood. You can see where this is heading right? Yes, to complete disaster!

The light was incredibly bright but when I opened the strip canister I grabbed multiple strips rather than one.  The extra strips found themselves scattered all over the floor...and did I mention that this was 3am? I finally got a hold of a test strip and tried to put it in the meter.  It didn't work.  I had two strips in my hand.  I got rid one and tried again.  I put it in upside down.  The light had turned off on me and things were not looking good. When I finally had the strip in and blood on my son's finger...well there was not enough blood for the strip. I gave up!

I decided to learn in the light of day.  I would be prepared next time around. Despite my stumblings, my son kept using his meter and marking off his tests as before or after meals. He was a little disappointed that there was nothing to indicate that he was stressed when he tested. This was an option he found and used on his Contour USB

I was impressed at how easy it was to read the history.  At a glance, I had a great view of his tests for the day.  With a click of a button, I could see where the meter saw trouble spots.  It was great! I have to admit that I haven't bothered to sit down and log because when he exclusively uses this meter, its all there. It tells me trends and I can make decisions based on what was going on during that time frame. Its great!

Our rep told me that the meter can be uploaded to some online software at One Touch.  I haven't tried it. I am not great at that sort of stuff. Perhaps if he chooses to use the Verio IQ for school next fall I will have to check it out so we can sync data from the two meters. I never thought I would stop logging with paper and pen but I will say that this meter is beginning to convert me!

Strips on the floor
The Verio IQ is definitely a meter for those who love gadgets.  Its great for night testing as the backlight is amazing! Its actually a front light that lights up the strips and the space in front of it. The downside, I do have a hard time grabbing test strips at night and think that anyone with dexterity issues may find this a problem.  I also find that these test strips walk more than any other we have seen. Perhaps its the fact that they are gold and they have a superior attitude but they can be found anywhere at any time! It amazes me.

The Verio IQ is definitely a keeper! We love it and will definitely be using it to spot trends over the summer and possibly beyond.