Three words running through my head...

Privacy.  Disability.  Normal. These are three words that I have been pondering a lot over the last few days for a variety of reasons.

Privacy.  My son is very private about his diabetes.  He is very discreet when he tests or boluses.  He does not tell people that he has diabetes.  He does not like anyone to know when he is high or low.  That scares me.  I can understand not wanting to be singled out. I get not wanting to be "different" especially when you are in your teens but people need to know to understand. They need to know so that they can help you. As we saw the other weekend, he even keeps the highs and lows from me at times.  Thankfully he now wakes me for the lows before he goes to bed at night but diabetes has become so routine for him, I guess, that he doesn't want any intrusions.

This desire not to be different led me back to another word that had been swimming through my head--disability.  In Canada we get very defensive about this word. Many groups work hard to argue that diabetes is NOT a disability.  I can see that view.  People like my son do not want to be labelled.  They are not in a wheel chair.  They can feed themselves.  They are not disabled.

But then there is that word "normal" and when you live with diabetes life is not normal.  There is nothing "normal" about force feeding a child a peanut butter sandwich at three in the morning just so that they are able to wake up to see another day.  There is nothing normal about making yourself bleed ten or more times a day just to be able to function. There is nothing normal about poking yourself with a needle just to stay alive. 

Three words.  Should you be private about diabetes? Is it a disability? Does diabetes allow you to live a normal life? Three powerful words. I have my own answers as a mother but they probably won't jive with my son's.  The only one that I can clearly define is "normal" because long ago, a good friend told me that normal is only a setting on the dryer.

What would you do?

Today I have been doing my very best at doing nothing. I am easily distracted and have spent more time searching for ellusive quarters to finish my latest Packrat collection than getting any meaningful work done. Its a lovely sunny day with a storm forecast for tomorrow and my get up and go seems to be flaked out in the sun. 

In an effort to see some productivity today I began going through my twitter peeps to see what was new in research, blogs and of course cures for diabetes (there is no end to the number of "cure your diabetes" tweets to be seen).  As I went through some great information and read some blog posts that made me sad, I read one that really made me pause.  It was a "diabetic parents" blog called "Left Field".  The author's husband, who must have diabetes, was pondering what he would do if he won a lottery.  He stated that he would go to Brazil to have a stem cell transplant that would allow him to live diabetes free for 12-18 months.

My first thought was how devistating to go back to life with diabetes when your magical time was up.  She went on to state that he thought being able to experience life diabetes free for the first time in his lifetime would be worth it. This made me think of my own son. Would he think the same way? He has never known life without diabetes.  He can barely remember last week so there is no way he remembers life 11 years ago when he would eat without testing and bolusing.

I can't answer for him so I wondered what it would mean for me...12 months without night testing would mean that I just might start to make up for 17 years of sleepless nights only to be thrown back into full tilt when the "cure" wore off--but I could handle that. It would mean a year without a log book. No writing down everything he ate and every reading. It would mean no readings! No nagging to test, no asking "did you bolus?".  No site changes, no insulin cartridges to fill. No trips to the pharmacy for more test strips. No more test strips in the washer. No more test strips in the dryer. No more test strips in my car, in the driveway, under the couch or in the plants!

This is getting exciting but wait...it only lasts until midnight, I mean 12-18 months.  After that we are plunged back into the life of counting every carb, bolusing every morsel, testing day and night, worrying about A1c results, logging, fighting lows, injecting highs, advocating, educating, and paying the wages of more than one pharmacy employee.

Its a wonderful dream and for those who feel a cure is nearby, maybe its a fantasy they will bask in on a semi-regular basis. That was long enough in fantasy land for me. It was rather intoxicating but back to reality and getting that test strip out of my African violet so I can water it (I know it needs more help than that but its a start!).

Strength in numbers

I began the new year with a renewed commitment to both my blog and my website.  I was going to provide more information as well as make sure that everything was kept fresh and uptodate. I have been working hard at my promise to myself and have been very happy with the results. 

I have been going back over old school policies and looking to see if more boards are now protecting their students with diabetes.  I was happy to see Alberta had made changes.  There were more policies out there. We were doing something right.  I continued looking that the rest of the country and my enthusiasm took a big hit.  When looking at British  Columbia I saw that most places had antiquated policies regarding the administering of medication in schools that had been passed in the late 1990s! There were some places that had upgraded to create a "medical alert" policy but these policies were very minimalist.  I did note however, that almost every board had an anaphylatic policy. 

This brought me back to the good old breast cancer frustration.  No, its not as strange of a leap as it sounds.  Remember, in earlier posts I have discussed how wonderfully the breast cancer people have promoted their cause (and the allergy people have obviously done well at promoting their's).  Some have said that diabetes is not "sexy" like breast cancer and that's why they are more successful than we are. That made sense.  They also use pink as an awareness color and face it, its a nice color for many items. Diabetes can't decide if we are grey or blue.

I was frustrated.  We can't get the public's attention like the cancer people do.  We can't get the school's attention like the allergy people do. What is wrong? I have been working on this stuff for over 10 years now.  How can all of my work and the work of so many others be for not? We had to have made some inroads.

I had tried to appease myself by remembering the things that had changed...and then came the latest uproar in the diabetes online community.  For those of us who live and breathe diabetes, you know what I am talking about.  There has been a renewed fuss surrounding the JDRF.  I won't go into it at the moment because the issue has been flogged to death and then some, but what I took away from it is how separate we have become when we desperately need to be united. 

We waste our energy raging over which type of diabetes is worse and whose fault it is that we have to deal with it.  Can't we just all agree that "diabetes" sucks and we need to do everything we can together to make it better? 

It would appear that there is also a battle over which charity you should support and "my charity is better than your charity".  For me, each organization has something to offer someone. I am not a big fundraiser. I hate asking people for money.  I ask governments for money but that is different. Possibly, its because of this that I really have no time to worry about which charity should get my money (that and the fact that my visa gets the bulk of my money).

The third area I have heard debate lately is between parents and people with diabetes.  I really don't get this one.  As a parent, the "people with diabetes" are someone's children.  Their perspective is invaluable because they live in the same place as my child.  They have heard the "cure in 5-10 years" speech that many specialists love to give the newly diagnosed. (Thankfully we heard, "In 5-10 years the technology should be a lot better and make his life easier but be prepare for impotence in his twentys and other possible issues.")  They have been "low".  They have been "high".  They live with something attached to them 24/7 or they know that they forget to take insulin now and then. They know what its like to be a human pin cushion.  I don't. I know what its like to care. I know what its like to will your child to live. I know what its like to be sleep deprived but they offer a unique position that I personally treasure.

My focus is on the now.  I focus on trying to help people today live to see a tomorrow with minimal, if not no, complications. I spend my energy helping people get through with what they have and try to get governments to assist so that they can have better tools with less cost to themselves.

Maybe its because of this that I am so frustrated. We are all on the same side.  When push comes to shove (and there seems to be a lot of cyber pushing and shoving going on) we all want our loved ones with diabetes to be healthy.  We would all love to see a cure.  We all want the very best for those with diabetes. 

If we are to go forward, we must be together.  As one voice we are strong but as a mob who are simply shouting at one another...well we are just that, a disgruntled mob. Many have said it before but I will say it again...United we will stand but divided we fall. Let's move forward united and stronger than we have ever been so we can truly see real change in the world for people with diabetes.

Pullin' up the big girl pants...

Diabetes sucks. There I said it and it about summarizes all emotions that have occurred in the last four days.

Friday I heard about the five, count them that is F-I-V-E young ones who died because of Type 1 Diabetes.  There was a young woman who went into DKA while her parents were on vacation.  The callous reaction was to say, well she should have caught that she was high and treated. What was wrong with her? Reality--some people go into DKA very easily and the situation can quickly escalate out of control especially with no one to help you.

There was the nine year old little one who became so depressed that she took her own life.  She was nine! She was so devastated by this disease that she ended her life? Heartbreaking for those of us reading about it but the pain for the parents must be unimaginable.

As well, there was an eighteen month old baby whose diabetes was not diagnosed until it was too late. This child's life was cut down before it started.  This story hit very close to home as my own son was only one year older than this child and was within twelve hours of death himself when diagnosed.

There were two other families who lost their loved ones in the past week to this evil disease. I didn't know what to do with all of the information. I didn't cry.  I got a little angry at those people who think that I am too obsessed with diabetes and those who think that I worry over nothing when this could have been my child.  Highs and lows happen but few people really get how serious they both are.

The anger eventually faded because our own reality came pouring in.  My son was high...I mean HI and he was quietly dealing with it himself. I asked why he was drinking so much and he said it was because he was in the 30s (over 540mgdl).  I was ready to have a heart attack. All afternoon? I grabbed the meter and couldn't see past the latest reading "HI".  HOLY CRAP! Can't register????? What the......?? I quickly told him to drink water, change his site and his cartridge.  We checked for ketones. Yep, they were there.  I hate highs.  Six hours later and he was finally down to 8 (145) and I could breathe again.

Yesterday my son happened to be looking over my shoulder as I checked out my Facebook page.  "Mom why are there all of those blue candles?  You have one, Jen has one.  What's with all of the candles?"

I paused, I thought, what do I say? I have been blunt with him over the years about the seriousness of diabetes but did he need to know this? He is coming out of himself, enjoying life and taking care of himself.  I had been reminded of all of the amazing people that I knew who lived with diabetes for 20, 30, 40 and FIFTY years.  I didn't want to bring him down but I couldn't lie to him....
"They are memorial candles."
"Memorial candles?"
"Yep."
"What do you mean?"

"They are to remember people that have lost their lives to diabetes."

"Oh."

That was enough for him.  He didn't know if they had died last week or six years ago.  He was okay with things left there. I breathed a sigh of relief. I hadn't cried. I had pulled up my big girl pants and focused on the living and the wonderful possibilities.  I was okay. My son was okay.

Then I read, "He Held Me".  Tears were very close. The author explained her feelings as she went low last night and had to rely on her spouse to bring her around.  My heart broke.  I hated diabetes even more.  Why did she have to go through this? Why do we have to deal with such a gamut of emotions. Can things just stop for a few minutes please? Can we experience some "normal" for even a day?  But then I remembered..."normal" is only a setting on the dryer so I guess its time once again to pull up the big girl pants and count the incredible blessings in my life rather the dwell on the sadness that can consume you. 

My son is alive. He has many wonderful role models in the diabetes community.  I have amazing friends and family who do get "it".  Accidents happen.  We are saddened but we must move on... Time to give them an extra haul.  

Diabetes doesn't care how big your bank account is

This morning I read a blog post about a woman whose perspective was shifted when she met a homeless young man who was begging for insulin. She commented on how sad it was to live in a society where a person was not begging for money for drugs or alcohol but having to beg for the life saving liquid that he required to flow through his system just to keep him alive.

A few hours after reading this, I received an email from a woman who need help funding an insulin pump.  The coverage that she was sure she had did not icover someone of her age (over 18).  She desperately needs a pump but, like so many, cannot afford to purchase it and the supplies herself. She was curious to know if I was aware of any compassionate programs that could help her out. Unfortunately I don't.

These two things brought me back to the ugly reality of diabetes--it remains a disease for the rich.  That sounds crazy because we know that diabetes does not care how big your bank account is. It really doesn't care what type of car you drive, where you work, or how much money your grandmother left you in her will. Diabetes does not care if you are young or old. Diabetes just happens and we somehow learn to live with it.

The sad reality is that some of us can live with it more easily than others. Years ago I wrote about the reality smack I received one Christmas.  I spoke with a friend who had been able to get some test strips to help a family who had a child with diabetes and no insurance coverage.  Two hundred test strips meant the world to this family and would free up $200 for them to buy gifts for their children. I had spent that amount of money on one child without a thought and without having to worry about my son having enough diabetes supplies.

I live in a place that will cover most of my son's supplies including his insulin pump until he is 25 years old.  That is something that I value because I have no insurance coverage and all of my son's pump supplies would have to be paid out of pocket if I lived in many other areas of Canada.  The fact that we are lucky to live here also presents another glaring fact, because we are not amongst those who can "afford" diabetes, we are restricted in where we live in order to have the best of care. 

If we lived in Ontario, my son would have all of his diabetes costs covered and I have heard we could even consider putting him on a Continuous Glucose System without having to cover any of the cost.  If we moved to New Brunswick, my son would have no coverage at all and if we moved to British Columbia he would have some coverage.  I have no plans of moving anywhere but am pained that, in Canada, as with the rest of the world, if you have diabetes your ability to receive the best treatment options depend on where you live...or the size of your bank account.

If you can afford the insulin, the test strips, the glucagon kit, the insulin resevoirs, infusion sets, pump, CGMS, and sensors then you can efficiently manage your diabetes to the very best of your ability.  I am not saying that this will guarentee you the best control, but you will have the best tools to help you be the best artificial pancreas you can be.  If you have to pay for your "new" insulin (be it rapid acting or long-lasting) because your province's formulary only covers things like Regular insulin and NPH then you have to watch your insulin consumption a bit more.  If you have to pay for your own infusion sets then you want to cry each time sweat or rough play causes a site to fall out before at least reaching day three of use.  If you have to pay for your own CGMS then you pray with each sensor that it will last and continue to provide data well after the supposed expiration date.

The items I have listed above are not luxuries.  Its not about having a Hyundai Accent versus a Jaguar.  These items keep our loved ones with diabetes alive, healthy...and ultimately active and productive members of the tax paying community. We have made huge strides in the past ten years regarding improved access to medical supplies and devices. I pray for the sake of my son and so many other people's children that we make bigger leaps towards seeing no inequity regarding medical coverage in the future.

I think he's growing up

This morning I watched my son head off to school.  Gone were the days of baggy tshirts and the orphan look.  He is now a young man with his hair just so and tshirts showing off his new developing body.  I know that puberty has arrived because of the nightmare roller coaster of blood glucose levels we are riding on.  I know he is growing because I now look him in the eyes where he once looked up to me.

He is my youngest.  I have always looked at him as my little boy. Diabetes meant that Mom hung around more places with him.  He didn't venture off as much by himself.  He was always more of a homebody.  He was happy to spend time by himself and could easily amuse himself.

My how times have changed!  He now has his XBox headset on at all times and is steadily chatting with a variety of friends.  He is asking to go over to this classmatess house and to the movies with a group of friends.  He is beginning to take better care of his diabetes which allows me to let him spread his wings with greater confidence. 

He was low over the weekend.  I caught one low at 2am and another after 8.  Of course, he was asleep for both of them.  At the supper table, he mentioned that he must have been low a lot the previous night.  He felt he was low at least four or five times.  I said I had dealt with three lows.  The 2am too a bit of treating.  My fiance suggested that he needs to learn to wake up and deal with his own lows at night. My heart broke at him taking on so much responsibility but I knew that this was true. One day he would need to be able to look after everything himself.  I plan on him having a CGM by the time he leaves home but he still needs to learn to actually wake up if it alarms.  My son however was not worried about any of this. He quickly replied that he planned to live with us until he was at least 30 and thus the problem was solved!

He is taking on other problems however.  Sunday night his low insulin alarm went off.  He told me he was going to fill the cartridge before bed.  I know this is not the ideal time to do anything with your pump and I have had that discussion with him before.  Since I test and check things throughout the night, I will keep harping and hope he will fix this habit in the next few years.

But back on track, I went to bed and my son headed to bed soon after.  I forgot about the cartridge and so did he!  At 2:30, I woke up and tested him.  All was fine but his pump was alarming.  My son actually sat up in his bed. I asked why his pump was beeping.  He said "I

forgot to fill the cartridge!"
"How many units do you have left?"
"Three"
"I guess you are getting up to fill it huh?" I asked as he headed off to the fridge to get insulin.

I was proud to see him taking charge and dealing with his oversight. I didn't have to deal with anything. I just had to go back to bed.  His 2:30am cartridge change may not have been his finest hour of diabetes care because he was in the 20s (360+) when he got up at 7 but it was a start. 

So when he was up and heading for school this morning, I sat amazed at how much my son is growing up.  He is more outgoing. He is getting taller and more physically mature.  And the one thing I feared would never happen--my son is getting more responsible.  Wonders never cease! I hope it lasts!

Voyages into the room of a teen with diabetes

Today I did the unthinkable...I ventured into my teenage son's room and attempted to tidy it up a bit.  In fairness to him, it wasn't too bad.  I made him shovel all of the used test strips, pump tubing, empty insulin bottles, and old school papers off of the floor yesterday.

My first stop was the bed.  Time to change those sheets! As I pulled back the comforter I found stray socks--used, smelly and rolled in a ball at the bottom of the bed, test strips, and his cell phone. I couldn't believe that he headed out the door this morning without it!  He must not have been very awake when he was heading out the door but at least I know he did remember his meter.

As I went to put on clean sheets, I continued to shake my head.  Down the side of the bed were another four or five used socks, an old cell phone, numerous dead test strips and a few infusion sets. 

The entire situation made me sit back and laugh.  He really is a teen boy--smelly socks, cell phone, deodorant, workout equipment, its all laying around his room in various states of disarray.  He is also very much a teen boy with diabetes--test strips(new and used), empty test strip vials, tubing, sites, log books, as well as full and empty glucose tablet bottles.  Oh my!