Saturday, April 30, 2011

Diabetes Nirvana

Despite the latest insulin fiasco, my son claims that his vacation from me is going well. I am still waking up every 3-4 hours thinking that I should check him but am enjoying rolling over instead. I have one more night to enjoy before Diabetes returns to kick my sorry butt.

In the meantime, life has been fabulous in a way that only makes sense when you live with Diabetes.  When I returned home, the dreaded A1c report card was sitting in the mail box waiting for me.  Our nurse had told me to email her next week with the results of his A1c and his routine celiacs blood work so I was surprised to see a number in the A1c section. My surprise quickly moved to elation when I saw a low 6% result!

All of my frustration, complaining, sitting down and logging, nagging, and logging some more had finally paid off! I was over the moon! I wanted to scream and do a happy dance in the middle of the living room.  Larry asked if this result was something permanent.  I told him no.  This just means that we did a good job over the past three months and now we have to work again to do the same thing over the next three months. The plus side is of course the theory that it will offer him some metabolic protection later in his life. 

I texted my son to let him know the amazing news.  His nurse had told him at our last visit to be happy with an A1c in the  7s%  but he knew that I wanted lower if possible.  I told him "ur a1c came back and u did an AWESOME job!".  His response was "Great. I am going 4 a ride.  Text u later."  Okay, so I remained the only person excited about this. I went to bed that night feeling so much better for all of the nights I spent awake.  I was winning. I was protecting my son to the best of my abilities and the result was a good grade from the lab!

After such an awesome diabetes day, life could not get any better right? Wrong!  I had a parcel waiting for me that I had to pick up. On the way over to the depot, we stopped in to pick up a few things at a local grocery store.  As I went to pick up two liters of milk, something caught my eye--Rockets in a box.  Rockets (Smarties for my American friends) are usually found here near Halloween and come in small rolls.  These were big Rockets in big packs. They looked just like glucose tablets.  That got me many carbs were there in a Rocket? It turns out that not only did they look like glucose tablets, they had the same carb half the price!! Oh yeah, the diabetes gods were smiling on me once again. 

Next it was on to the Purolator depot.  The box I picked up was huge.  Inside was a new Accucheck Mobile for us to test and review.  I love gadgets. I love diabetes gadgets even more.  And the thing I love the most? Free diabetes gadgets!! We haven't had a new meter to test out in ages so I can't wait to pull it apart and see what we think.  My son liked the Accuchek Compact although I was not that fussy over it.  This one seems really heavy but it could be the packaging.  I will let you know what I think in the coming month once we actually try it out and see.

I decided to text my son with the latest good news--new tablets and a new meter. It was diabetes nirvana!  He was equally as excited and surprised me with a text that said "What was my A1c?"  He was paying attention! 
I told him "6.3" 
He replied "That's really good!" 
I said "FABULOUS! It shows what we can do together! Keep logging, keep testing, and we will keep doing a great job."
"K, I am going riding now. TTYL"

At least he showed some interest and a real understanding of what that meant.  We are making some progress....its painful but there is tangible proof that something is getting through!

Thursday, April 28, 2011

Easter Vacation...Part Two

The good news was of course the fact that we actually remembered to bring insulin on our Easter vacation. I packed not one, not two, but three vials.  We were set. They were put in a lunch bag with an ice pack, close but not with the insulin.  We had cartridges to put the insulin in and infusion sets for site changes. Life was good.

Our holidays went well. My boys enjoyed time with their grandparents as well as a great aunt and great uncle.  The weather was pretty good so there was yard clean up, tree trimming and lawn tractor riding to fill the days as well as a bon fire for the evening.

Diabetes is less stressful at my mom's because I know that when I am not around that she is asking my youngest son all of the right questions...
Did you bolus for that?
Have you tested lately?
Do you need the scale to get the carbs for that piece of cake?

Its a great feeling! Obviously my son feels pretty relaxed as well and quickly begins to forget that he still has some diabetes responsibilities.  His site was changed before we left.  A few days into the trip, I heard the beloved Cozmo let him know that it was time for him to change his site.  I asked if he had done it.  He was going to do it later on.  After having the site in for over five days and us heading home, he finally said, "I guess I need to change my site."

He once again claimed that he didn't want to change his site earlier because "Timmy", the tried and true site was perfect. It was working he felt and it would be wrong to try a new one.  In an exasperated voice, I explained to him that the "wound" created by his site was healing and "Timmy" would not be doing the job very well much longer.  I asked how his readings were. They were high.  I rested my case.  I did not freak out but I wanted to.  My other son and Larry each had a say also.  They told him that it sounded like it was time to change things. Eventually he agreed and said he would do it at our next stop for the night.

The site was changed but the cartridge was getting low.  Once again, my young procrastinator felt that there was more than enough insulin to get him through the next day.  He was going to his father's house the next day so I gave up.  He would fill the cartridge once he got there and was settled.  He had three vials so I would not have to worry....until I dropped him off and was six hours away from him.

At that point I got a text message from my mother.  "There were three vials of insulin left in the fridge"
Wonderful!!! was my reply.

I started to text my son but decided to call.  I asked what he planned to do.  He said he had some insulin in his Cozmo bag and it should do him.  I was worried about how potent this vial might be. I did not know how long it had been out of the fridge but I would have to take a chance before telling him to ask his father to go to a pharmacy and buy a vial of insulin.

As I began to breathe again, I decided that I could only be so mad.  He is 13 and admittedly very forgetful.  He did do the right thing by putting the bag of insulin in the fridge.  I was wrong in "assuming" that he had left it in his suitcase.  I should know better than assuming anything wth children.

Today I texted him again asking how things were.  All was fine. I needed to know how the insulin was working and figured a call was again the best method of communication.  He had been really high, he had been in range and he had been low.  The insulin appeared to be working and he was good to go until Sunday night when he comes home. I could relax until then and enjoy not having to test at night.

Okay, I am totally kidding about that last part.  I woke up at 3am the first night he was gone. I wanted to test him. I couldn't fall back to sleep. I took solace in the fact that he did wake up to one low recently and he will hopefully be more diligent when Mom isn't there to test. He will only be gone a few more days. I will try to not think about what can go wrong but be happy that he is enjoying time with family and friends. Now where is that wine glass???

Saturday, April 23, 2011

Easter Vacation...The adventures of Day One

We packed up our supplies...with two vials of insulin for good measure.  I made sure that we had at least two meters, 100 test strips, and an infusion set for every day my son would be away from home.  There would not be a problem on this trip!

We squeezed our way into the car and prayed that my oldest son would pack light or we may have to strap him to the roof! Thankfully we all fit in...with a bit of room to spare.  I was really prepared for this trip.  The first length of our trip was a nine hour car ride. I had my son put the "travel basal" into his pump and we were happening!

We bg levels stayed relatively stable despite the hours in the car and the only exercise being lifting his diet Pepsi to his lips at a restaurant. When arrived at the hotel room, we unwound a bit before enjoying big slices of pizza and garlic fingers.  I went to bed certain that no activity and pizza would result in some lovely highs that night.

At 3:30, I woke up and stumbled over to my son's bed.  The room was dark and I didn't want to wake Larry, my other son or the dogs.  Both dogs were on my son's bed.  Our dog didn't move at the sound of me going to test my child.  She was used to this routine. It had been around longer than her.  The other dog is Larry's and she perked up her head.  She wondered what was going on.  I was collecting blood from my child to make sure he made it through the night.

The blood looked to me like he was high. I waited the 5 seconds and was sure I would be entering a correction. Wrong!  He was low. Crap! Good thing I packed that bottle of glucose because the only beverage in our room was diet Root beer.  I tried to concentrate enough to count off four tablets.  I checked the clock on more time and looked longingly at my bed. I so wanted to crawl back in there and go to sleep. I knew if I did...well I would fall asleep. Darn! Time to get out my book.

I couldn't read it in the hotel room.  There were five other bodies that would not have appreciated me turning on a light to read for the next 15 minutes or more so I headed to the bathroom. I set myself up on the edge of the bathtub and proceeded to enjoy my new novel.  After 15 minutes, I was joined by Larry.  He noticed that I was up and wondered what was going on.  I said "3.3(59)" .  He just nodded and continued on with his business.

I decided to go and check my son. Victory!! He was in range! Time for some sleep...not a lot mind you as we had to be up early to continue on with the next leg of our journey.  But as they used to say on one of the TV shows the boys used to watch "that is a story for another time."

Happy Easter!!

Wednesday, April 20, 2011

The trip to get the dreaded diabetes report card!

Yesterday was our third visit to our new diabetes center.  Each time we go, I find myself watching comparing, and thinking way too much.  Each visit brings new faces--new team members and new faces that you know are also living with "the beast".

We went to the same small clinic for ten years.  We saw the same doctor for all of that time, the same nurse for most of that time and the same dietitian for half of that time. My son's doctor believed in pushing us.  He would delay returning my calls so that I was forced to make decisions on my own.  He guided me and then left me to fall on my own--being there to laugh and help me up when needed.  He forced me to make my son do more earlier so that he could handle being away from me.  During the time, I often grumbled and wished he didn't have so much faith in us.  Now I remain grateful.

My reputation preceded our arrival at our new clinic. Some of the team members I had known for years, sat on committees with or simply socialized with at conferences.  Yesterday I met the woman who liaisons with schools and deals with school issues.  She asked if I was a diabetes educator.  I said not formally but yes I educate people about diabetes.  I had never really thought of myself like that before but it was an interesting way to phrase some of what I do.

The downside to our new clinic is that we do not always see the same doctor.  I am not sure what I think of that yet.  Both doctors we have seen have been great so it may be okay.  Yesterday's doctor looked at what we were doing and seemed somewhat surprised by the fact that I make all of his changes on my own. My first thought was, after 11 years I would hope so, but then I thought back and was again grateful for a doctor that pushed me to learn this skill.

When we saw our nurse, my son sat far away from her hoping that she would forget that he was to get blood work done with this visit.  She didn't.  He was less than happy to be told that he could "hop on down to the blood collection unit today."  He moaned. He groaned.  She said that she was a stickler for blood work and that they do routine screening on his thyroid as well as checking for celiacs.  I was over the moon! I loved that they were proactive. I told her that this was great as far I was concerned.  My son was still moaning. He thought the idea of going to a place that referred to itself as a blood "collection" unit was ghoulish at best.  He had great visions of some sort of blood letting experience.  He could see saws chopping into his veins and the blood pooling in buckets placed all around him. Yes, he has developed a wonderful imagination!

I have no idea what his A1c was for this visit.  I am thinking that it should be back closer to the range that I like.  The nurse told my son how wonderful his A1c's of the past had been. I covered his ears.  She laughed at me and said puberty is tough. He is doing great.  I reminded her that the first A1c he had there was his worst EVER, as in--in 11 years of diabetes.  I also stated that I felt that way because it also reflected a time of missed boluses and failure to test.  The next A1c, which had dropped slightly, reflected hard work and taking care of himself.  Again, while I would love to see it lower, the second one was much more in line with the care that I would like to see him give himself and therefore I was much more accepting of it.  I would still be much happier to see him drop back below the infamous 7% line though.

All in all, I think we will do well at this clinic.  My son has still not recovered from the fact that the will have to go back to the blood collection unit to donate more of his precious blood. He still needs to have fasting blood work and a few other tests done.  I am still surprised that his nurse was somewhat amazed that he was doing all of his own site changes.  And of course, I will never live down the fact that the dietitian opened his log book to the page that had written--Lunch:  juice, cookie  Supper: Banana split and slushie.  Really he does eat healthy most of the time...honest! It was a one off kind of thing we noted as she ushered us out of her office with a pamphlet on how to eat when dining out. Oh well, you can't win them all!

Monday, April 18, 2011

He woke up!!

This weekend we headed off for some relaxation and spring cleaning at the cabin.  We brought the ATVs, the axe and of course the Fantastik with bleach for the tough spots! Fresh air, a few good rides, clean surroundings, the sound of birds and wonderful company made for a great weekend.

But of course we could not leave Diabetes behind. Once again, the checklist was brought out...

Do you have extra strips?
Two bottles.
Do you have spare sites?
How many should I take?
One for every day we are gone. You can never have too many sites and don't forget a syringe or two just in case! Do you have cartridges?
A spare meter?
I think so. Yep, its here!

Did you notice the item that we once again forget to check off from the list? Yes, after a near disaster this winter, we still forgot to add the vials of insulin to the check list! There is always insulin vials sitting on his dresser.  I was sure that he would add one or two to his kit.  What was I thinking??

Day two of eating, exercising, and fresh air... My son boluses his food and I notice that the plunger is pretty high up in his pump. 

How much insulin do you have in there?
Oh I have lots! At least, well, there's 35 units left.  Is that bad?
Did you bring a spare vial?
Um, I think we have some left from that other trip.
Did you bring a spare vial?
I guess you won't be eating much for the rest of our time here!
"What do you mean exactly by not eating much?" asks the human garberator also known as my youngest son.
I mean, you have enough insulin to cover your basal for 24 hours and a bit.

On the upside, we were not going to be there for 24 hours.  The downside was there was still a marshmallow roast, breakfast (his highest insulin meal of the day), and a cooked lunch.  The upside was they had eaten most of the marshmallows the night before so that treat was pretty limited. He carefully monitored his food intake for the rest of the night. He had sugar free jello a lot and used an apple for a low.

Sunday morning arrived with sunlight streaming in our bedroom window.  I could hear someone up...and they were stoking the fire! This was good. My son is never up before us but I would enjoy the heat in the cabin and chaulk it up to him wanting to get out and enjoy his last day on his ATV before we went home. Eventually I got up, after I was sure he had everything organized for the rest of us. I told him how surprised I was that he was up.

I was low.
You were low?? And you got up? On your own??? Holy crap! Are you serious?
Yep, I was low.
My baby is growing up! You woke up to your low!!

I grabbed my son and gave him a huge hug. We were all in shock.  He will be spending time with his father over Easter and I am always worried when he is away from me and my CGMM system.  Could he really be sensing those lows in his sleep? I am not about to count on it. I am however going to be extremely grateful that he is at least occasionally (once in a lifetime could be considered occasionally right?) waking up to treat himself!

Friday, April 15, 2011

How can nurses help Children/Teens with Diabetes?

I am coming into a busy season. I have doctors appointments everyday for the next week so this guest post is perfectly timed!! It is contributed by Bobbie Walker, she writes on the topic of BSN Degree . She welcomes your comments at her email id: bobbiew862[@]gmail[.]com.  Thank you so much Bobbie!! and enjoy everyone...

How Can Nurses Help Children/Teens with Type I Diabetes?

Diabetes Mellitus Type 1 is harsher than Type 2 diabetes because it is an autoimmune disease where the pancreas stops secreting insulin and is completely dependent on external sources to keep blood sugar levels under control. Its onset is swift and sudden, and it hits children and teenagers more than adults. Around 10 percent of all diabetics in the US have Type 1 diabetes, and the sooner this is diagnosed, the better it can be managed to prolong life, improve its quality, and prevent diabetes-related complications.

Nurses play a vital role in helping to provide care for children and teenagers with Type 1 diabetes and in educating them and their parents in managing the disease so as to reduce the risks and allow them to lead as normal a life as possible. They are involved in every stage of the disease, from its diagnosis to its management and care.

In the case of very young patients who are unable to look after their own health, nurses must:

• Comfort their parents at the diagnosis and reassure them that Type 1 diabetes is manageable with the right kind of care.
• Educate parents about the symptoms and signs of danger they have to be aware of – hypoglycemia and hyperglycemia are two conditions which could cause unconsciousness in diabetic patients.
• Teach parents how to provide the best care for their children, right from giving them their insulin shots at the right time to preparing their meals with care and getting them to eat on time to ensuring that they get some exercise regularly.
• Counsel parents through their frustration and helplessness in having to deal with crying children who throw tantrums because they don’t understand what is happening to them and why they have to have injections and are not allowed to eat whatever they want.
• Educate parents on what to do and whom to call when they see signs of distress in their children or when they lose consciousness.
• Remind them to come in for their routine tests and examination, and ensure that you update them about the progress of their child without holding anything back.

When a teenager or an older child has Type 1 diabetes, nurses must:
• Counsel them through the trauma the disease causes – they are sure to be devastated because they must change their lifestyles considerably adapt to a new way of life that is completely unfamiliar to them.
• Teach them how to inject themselves with insulin as and when needed.
• Educate them about their meal plans and make them understand how important it is to eat the right food at the right time and in the right amounts.
• Show them how to notice signs and symptoms of distress and stress upon them the need to inform the closest adult or call an emergency number for help.

Nurses must start providing care for their diabetic patients from the time they’re hospitalized initially after the diagnosis, and continue monitoring their progress as the years pass by. Diabetes is not a disease that can be cured, and it’s important to know how to manage it and keep it at bay so your patients can lead as close to a normal life as possible.

Wednesday, April 13, 2011

CGMM--Continuous Glucose Monitoring MOTHER!

Later this year it will be time again for me to start looking at new insulin pumps.  It is not something that I am looking forward too because I hate to part with our beloved Cozmo, the Lean Green Pumping Machine and there is just no interesting pumps out there at the moment.  Since the pumps won't be what attracts me, I began to think about the continuous glucose monitoring part.  Is this something that I should be looking at?

The idea of real time readings has an appeal.  The concept of still having some general data when my son fails to test has greater appeal.  The fact of yet another gadget attached to my son 24/7 has no appeal to either of us but safety is my greatest concern.

I thought about being able to sleep at night in relative comfort.  The Continuous sensor would give me an idea of whether or not sleep was an option for that night.  This really appealed to me until I thought about it a little more. Currently we are using a CGMM at night--a continuous glucose monitoring Mother.  It works quite well (knock on wood).  My son has never had a seizure.  His guardian angels have always managed to wake me up at just the right time when he was low at night. 

I don't sleep anyway so perhaps the CGMM is the way to go until he is older and thinking about leaving home. The plus to this system is of course the cost.  I don't think our provincial plan will cover sensors or a system.  I know my son's father would not be happy to have to pay for another diabetes expense.  This does not help monitor him during the times that he is away from me, but I have gotten pretty good at setting higher basal rates for when he is gone. 

The more I thought about a CGMS vs CGMM, the more other things began to float through my head.  For over eleven years I have been using the CGMM and thinking I was doing well.  What if a CGMS showed that I was missing a tonne of lows? What if it showed that I was doing a horrible job as a pancreas and putting my son's life at risk on a regular basis? Instead of alleviating stress, it would increase my stress level (something I really do not need). 

At the moment the Mother system is causing the fine lines around my eyes to deepen.  It sees me fall into bed each night exhausted but knowing that in three hours I will be up again.  It has increased the number of grey hairs that are finding themselves throughout my hair.  The upside? Well I am keeping the cosmetic companies going trying to find just the right creams to hide or erase those fine lines.  I keep the hair product people in business buying hair colors.  My nerves are okay not knowing about the lows that are rebounding thanks to his own glycogen stores. Perhaps a continuous glucose monitoring system is not in our immediate future and the continuous glucose monitoring Mother will continue along just fine.

Tuesday, April 12, 2011

Planning on planning a hypo

The other day I was asked to look through a package for children with diabetes to take to school. It detailed the roles and responsibilities of both caregivers as well as school staff. There was a section for parents to fill out regarding the care of their child.  I was less than impressed with this section but one thing that really stuck out was when the parent was asked to inform the school when their child would be low. 

Excuse me?? When will my son go low? Are you serious? If I knew that one I could prevent it. If I knew that one, I would not be looking at CGM technology or worry about him when he was away from me. Who comes up with this stuff?

Okay, there are some cases where lows can be anticipated...kind of.  Yes there is a chance he will go low after gym...unless he had pancakes for breakfast and he was probably high before he started so he will most likely be in range.  He might also be okay if we knew it was gym and he had lunch just before or if he was coming down with a bug or if he was going through a growth spurt, or....well you know the drill. 

In all fairness, there was a time when we fought highs right after breakfast. No matter what I did, it seemed that he was high so I could almost anticipate that but once I did, well Diabetes changed its mind and all was okay at that time. 

I wish it was that easy to predict when he will go low.  For example, last night we went up to the cabin for a drive. He ran around in the snow. He did some shoveling.  All in all he was much more active than he usual night of playing xBox and studying.  I had a sense that he would be low during the night. He had been in range for the past two nights so a small bit of activity could throw things off.  Had I have known "when" exactly he would have been low, I would have set a temporary basal and been able to happily sleep through the night instead of being up for 4 til 5 in the morning with a low that kept dropping after glucose tablets instead of rising.

In the past two days, I have read of a young man and a young girl who both were found dead in their beds.  I am guessing that if it were as simple as knowing when they would go low, both of these young people with diabetes would be alive and their families much happier today.

The scariest thing about the question of "when will your child go low" is not the question itself.  We have gotten used to the ignorance of the general public about the intricacies of diabetes care.  The scary part for me was that this is part of a package for children with diabetes going to school.  In many cases, these policies and information packages are created with the help of parents of children with diabetes.  How did they manage to overlook that one? Did someone in the bureaucracy just think it was okay to slip it in? So much more educating to do but jeez, wouldn't it be nice if we really could plan those hypos to occur--oh yes at 6pm according to my son!

Sunday, April 10, 2011

What would the me of today say to the me of back then?

I recently came across a link to a very interesting project.  It was a video that asked mothers to think back to just before they had their first child.  If they could go back in time, what advice would they give themselves? That got me to thinking...if I could go back to the weeks just after Diabetes moved into our lives, what advice would I give myself?

At first I thought, that is too large of a task.  We have gone through so many stages. What one sentence would cover everything? What words of encouragement would have gotten me through the food battles and the vomiting I dealt with for the first two years?  What would I say to help me deal with the rigid structure of our new life? What would I tell myself? How would I provide encouragement?

What could I say to ease the burden on those days when I wanted to crawl under a rock and never return? What would stop the tears at 3am when he was low again and I felt too exhausted to go on? What would get me passed the worry of how to pay for an insulin pump or supplies? What would motivate me to continue to fight the federal government for tax change? What would make me sit down to one more meeting about insulin pump funding?

What was I going to tell myself? How would I tell myself about the amazing friends that I would meet who would help me to get up when I fell? How would I let myself know that no matter how dark the hour, there really was light up ahead and it was not always another train.

What would I say to me? I would simply say, "You will make it."  So many days, I wondered (and still do) if I really would.  So often I thought, I just can't do this anymore but what am I going to do? What will happen if I don't? Tears would come and I would want the floor to just swallow me up.  I knew I had a job to do...a very important job.  I was a pancreas to my son. I was a mother to my boys.  I had to balance it all for the health of everyone involved.   

Its been over 11 years and each day brings a new challenge.  Life and Diabetes are a formidable mixture.  They show you blessings and force you to face your greatest of fears.  They bring you great joys and cause you a torrent of tears. 

The advice to the me of years are stronger than you think.  You are more determined than you know.  You will find compassion.  You will find help when you need it.  Most importantly of all--you WILL make it through.

Friday, April 8, 2011

A budding advocate?

Did you change your site?
No, its still good.
When are you planning on changing the site?
Mom, this is a really good site. I like this site. I even named this site. His name is Timmy.
You named the site?
Yeah,  and what is it with diabetes?
What do you mean?
Well you never see good diabetes ads. We don't have cool names.
Like Timmy?
Yeah! But seriously, what's with that tv commercial for the old meter?
You mean the meter that you use?
Oh... (slight pause while he thinks) Well its still a stupid commercial and why don't we have more? There is every kind of cancer commercial.  They even have Kleenex!
I guess you have your work cut out for you.  You will have to go out there and make Diabetes a household name.  You will have to advertise!
I don't have that kind of money.
No, you get companies to display diabetes stuff for you.
Yeah, I could get the Kleenex people.

I really have no idea as to why my son is obsessed with Kleenex.  I have no idea where his sudden sense of diabetes social consciousness came from either but I was rather impressed. For the first time, he was expressing his own need for diabetes to be understood by the larger public.  His mom has been into raising awareness for the past ten years.  He has simply been the child who wishes it would all go away.

We (the diabetes community) have often discussed how important it is for us to increase awareness. We have discussed how diabetes is not as sexy as some other diseases. My son has not had any interest in those conversations. He has not worried about having a diabetes roll of toilet paper or a pen that promotes diabetes awareness. He will take a new meter and other diabetes gadgets but the need to get out there and let the public know more about diabetes has not been his thing.

If you know my son, you are most likely saying that awareness probably still isn't his thing...changing the topic off of a site change and onto something that interest Mom was his motivation.  You are probably right, but a Mom can dream can't she?

Monday, April 4, 2011

2005 until far have we really come?

Last summer we were approached to ask if we would be involved in the CDA's follow up to its 2005 Diabetes Report.  Of course I said yes (my son said, "this is the last time.").  I thought that quite a bit had changed over the years.  We were now getting insulin pump coverage for my son--until he turns 25.  We had a provincial drug plan to cover strips and insulin for the day when he is no longer covered by his father's plan.  Life was good right?

Wrong.  Yesterday I sat down and read the report in anticipation of today's release. The first thing I did was go and check to see how everyone else was doing.  With the first release, I had the opportunity to meet many of the wonderful people who were profiled.  A few of them I have touched base with now and then through social networking sites.  What was new with the other people, I wondered. Had their advocacy efforts paid off? How were they looking these days? (My son had changed a lot since his last picture!) I was saddened to see that three of the original interviewees had passed away.  I had met two of them.  They had experienced extreme difficulties in affording to manage their diabetes.  Their deaths, while sad, were not entirely unexpected.

After looking at many new faces and a few familiar ones, I tackled reading the the report itself.  What had changed? What areas still needed work? Had our efforts paid off? I was rather disappointed with what I saw.  While our own province was one of the few that covered insulin pumps and supplies, and was only one of two that provided even a small bit of coverage into adulthood, there was still horrible coverage for insulins.  Despite the many "new" insulins available on the market, only regular insulin remained approved for use.  Other insulins can be prescribed but you must have special permission to use them in order to have them covered under your provincial drug plan.  This was crazy.

Five, almost six years of serious advocating by so many people that I know and we have only made a few baby steps forward.  When will governments listen? When will they learn? They continue to fret about the overburdened health care system, but refuse to take the steps that will help them in the long term.

Can you imagine if insulin pumps, CGMs, rapid acting and long lasting insulins were all covered under your health care plan? You would have the tools available to you to manage your diabetes to the very best of your ability.  Instead of paying for lengthy hospital stays or kidney dialysis, the government could pay for more diabetes education and continue to work towards the prevention of complications.  Complications cost so much more than basic diabetes care.  Its so frustrating that they just never seem to truly grasp this concept.

The other night I was asked if I ever want to give up and walk away from it all--delete my blog, tear down my website, and ride off into obscurity. It really doesn't provide me with an income and it takes up so much of my time.  Some days I think about it.  What am I getting out of it? Am I making any headway? Do I make a difference? As I have said before, those times are usually when I get an email or phone call that let's me know that I am making a difference.  Reading this report however makes you wonder. 

So many people have worked so hard and we have seen so little change.  I guess on the other hand is that fact that we have seen some change.  When the 2005 report came out, I did not know where the money would come from for my son's next insulin pump.  My family had paid for the first one.  Today, I am confident in knowing that he will have a pump until he is 25 and I have 11 more years to get that age upped to "adult coverage" with no age limit.  Its a huge battle.  Its a tough audience.

I pray that this time, some of the information in the report will get through to the powers that be.  We need change.  Our loved ones need assistance.  They deserve the best health care that Canada can offer.  We deserve to have the economic burden of complications reduced and therefore allowing our tax dollars to go further and into other areas.

Sunday, April 3, 2011

How has diabetes changed ME?

The other day I wondered, how has diabetes changed me? That's pretty well where the thought ended. Actually it ended with me writing it down and thinking "dang, that would be a pretty good topic one day!" Today is the day I tackle it.

Diabetes changed my career dramatically. I have a degree in psychology with a minor in sociology and have a background in finance.  Well, after March of 2000, I began to use my psych degree to figure out how to make a two year old eat food to keep him alive when he didn't want to. I later used my background in finance to help figure out how to pay for pump supplies.

I had planned to rejoin the workforce after my youngest son entered school.  The boys had family that lived close by so childcare would not be a problem...until diabetes arrived.  Diabetes completely sidetracked that plan.  I often still wonder what I will be when I grow up.  My mother on the other hand swears that diabetes brought me my calling.

Diabetes made me care more about issues such as health care and education. I was never one to sit on the sidelines. I always felt that if you didn't speak up, how could you expect people to know that change was needed? I have definitely spoken when it comes to issues surrounding diabetes.

Diabetes has left me unable to sleep for more than four hours at any given time without waking up. It has given me a few more grey hairs than I probably would have had at this point in my life.  It has also added to the fine lines I am beginning to see appear around my eyes. 

Most importantly, Diabetes gave me a greater appreciation of how precious life is.  The day my son almost died is forever emblazoned in my mind--the pure terror I felt.  The helplessness of possibly losing a child was something that I never want to feel again.  Over the years we have lost friends to this disease.  I have learned to value each hour and cherish so many amazing friendships.

Diabetes has definitely changed me, and maybe in some small way, some of those changes are for the better.