A Diabetes Vacation

Technically I am on a diabetes vacation.  There is no night time testing. There is no carb counting or yelling out “did you test?”.  There are not even any text messages asking “What is your bg level?” The phone smashing to the floor of McDonald’s and never recovering took care of that one.

My son is visiting his brother and his father. He is now in charge of his care.  This does not make my life as carefree as it sounds. I sit here, hundreds of miles away from him, and worry, think and wonder what he is doing. Is he testing? Did you change that site? Does he have a new cartridge in? How are his readings going? Has he been low? How high have his highs been?

I do try to not think of diabetes 24/7.  I have tried to limit my worry and let him enjoy his time away. Before I dropped him off, there were numerous pep talks. There were a lot of reminders. After a bit he said, “Mom, this is me you are talking about.  How can you think that I wouldn’t test or remember these things?”

Um, perhaps because I live with you!

While we wait for me to have the chance to switch his phone over to another model and mail it to him, its messages through his brother and daily phone calls when he gets up to go over readings. I would love him to call twice a day but this is where Mom has been good. He needs his space.  He needs to do his thing.  Mom has to wait…and I have.

We have had calls that consist of…
“7.8 at 10pm, 13.1 at midnight, 4.0 at 3 am, etc.”  but we have also had calls that were “Yeah, I was a bit high but I ate that bread and messed up the bolus.”  Followed by, “okay we will go over specifics on another day when you have a bit of time.  Have fun! Love you!”

The vacation is tough. Its strange having no children and no diabetes.  Its great to be able to rollover at night but there is a lot of prayers at the same time. If I woke up was there a reason? Did he wake as well? Is someone watching over him? So far, yes to all of the above.  He has been doing well with his care and is great at calling.  The honeymoon may wear off and teen forgetfulness may creep back in but only fourteen more days.  Soon enough I will be back to complaining about sleepless nights once again!

Summer Vacation brings Mommy Anxiety levels to a new high

School is officially over and my nerves are already staring to fray.  Despite a very slow start to summer (as in I am still waiting for it to truly arrive!), my son’s insulin needs have managed to plunge dramatically. I have adjusted carb to insulin ratios and numerous basal rates over the past few weeks to no avail. 

I have been religiously pouring over log sheets trying to establish patterns and set rates. I have tried to guess future activity levels and needs. Despite my valiant efforts, I am failing miserably. 

Tomorrow my son will be heading off for the first official leg of his summer vacation–a few weeks with his father and brother. I am verging on pure panic and trying to appease myself knowing that there always seems to be a guardian angel watching over him when he is away.

I have a book that I will be carrying around and we will set up times to call when he can give me his readings. I know he will not be pleased to do this but 5am lows followed by mid-afternoon highs and early evening crashes are going to be the death of me otherwise. 
I try to make sure that he is running high before he goes away.  The reasoning behind this is two fold.  One, I know he tends to be on the go more and eating less when he is away.  I also know that he tests less and forgets more when Mom is out of sight.  I would rather him run high and be off in the woods playing with friends than be low and get himself in trouble in the same situation. At the moment, I am not sure that I have accomplished this. I will be doing a bit more tweaking today and then saying a lot of prayers!

Technically this will be my two weeks off. I will be able to sleep through the night but I won’t.  I will worry that he is not checking himself and all of the worst things that could happen. He has a deal with his father where by they alternate for night testing. Its probably a good thing but it still makes me nervous as neither have been very good at retesting after a late night low. I also know, as many people have told me in the past, when Mom isn’t there to act as his safety net, he will (and does) step up to the plate more.
So as of tomorrow night I will have to shelve my worries. I have to remind myself that he is going to have fun and catch up with family and old friends. I will text.  I will call. He will eventually answer. I will be counting the days until he comes home and he will be counting the days until he goes back. All I can do is pray a lot, keep my concerns to myself, and hope that all I have taught him is starting to sink in and that he will surprise me with his care while he is gone!

When perfect isn’t so perfect

I was tempted today to just re-post My Favorite Number blog.  It kind of fits with my night. My son’s readings have been all over the map. I am sure that is in keeping with the crazy weather–one day summer and six days of late fall. We have days of extreme activity followed by days of xBox and Dukes of Hazard movies. Add to that sites that are usually left a day or two longer than they should be and you can see blood glucose anarchy quickly developing.

Last night I expected highs.  He had a totally lazy day so when I looked at the blood on his finger as I tested, I predicted that it was of the “high” consistency.  Wrong! It was of the “crap, which way is it going to go” consistency.  He was perfect. He was 5.2(94).  It was 3 am.  What was he going to do for the rest of the night? Would he go up? Would he stay the same? Would he drop? Perfection is rarely achieved. What was I to do?

At 3 am, I hedge my bets that he will drop and feed him two glucose tablets.  I stumble back to bed hoping that I haven’t sent him nice and high for his first full day of summer vacation.

When I woke up the next morning, I got up and tested him again. I was positive that I would see a 9(160). I was sure that I had driven him up. Wrong again! He was low.  I went out to get him some juice but of course we only had Crystal Lite.  Okay, I will add sugar to it! A few big spoons full of sugar and off I went to wake him up and get him to drink. I don’t normally wake him but its morning and I was up so he could be also!

After a glass of sugary juice and he only went up to 3.5 (65ish).  Next stop was tablets.  I fed him at least another four.  As he was eating, in his sleep, I couldn’t help but think “Rockets–the breakfast of champions!”   I so need a life!

As you can see its been a fun filled start to summer vacation. He will be heading off to his father’s for a few weeks soon so I had better get things a bit more in control by then. Wish me luck!!!

Kevin Kline tells it like it is

I am not American. I do not follow the celebrity gossip. I do watch movies. I know who Kevin Kline is and I like his work (who can forget “The Big Chill” or “A Fish Called Wanda”).  I may have heard that he was somehow involved with diabetes but then again so is Cliff from Cheers (aka John Ratzenberger) and many other wonderful “celebrities”.  Today I watched a clip that made me realize that he is more than just a great actor, he is a father.  He is not just any father.  He is a father of a child with Type 1 diabetes who wants the world to know that we need better for our kids.

Today he told the world that “Once you have a child with diabetes you immediately stop being merely a parent.  You become a doctor, nurse, nutritionist, expert.” Mr. Kline when on to point out that diabetes never stops and worries never sleep…and neither do the parents.
For a change, the interviewers seemed to get it. Diabetes was taken seriously during this interview.  The only part that saddened me was the focus on technology rather than a true cure.  I appreciate technology.  I have seen incredible leaps in the eleven years my son has been dealing with this disease and I am forever grateful. I am a bit more content knowing that he will most likely have CGM technology to take forward in his life but he will still have to wear it.  He will continue to be a walking robot with a number of machines needed to keep him alive. He will be alive but there will also be a cost…a huge financial one. 
At the moment, we have difficulty having insulin pumps covered under our health care system depending on your age and where you live. How will my son afford his pump AND a CGM as well as all of the other “stuff” associated with this technology? That truly scares me. It is something that he will have to consider when both chosing a career and deciding where he will live.
I do not want to take away from the message of Mr. Kline however.  He showed true emotion as a father of a child with diabetes.  You could see the worry and sleepless nights in his face.  He described diabetes as being similar to having a newborn all over again.  With a newborn we carefully listen for breathing and fear SIDs.  With diabetes, we also watch breathing but fear ketones, Dead in Bed, and medical malfunction to name a few.
Just after watching this interview, I scanned through my Facebook news and noticed blue candles. Another child had died.  He was a teen aged boy, just out of high school.  This morning I received a memorial from a family of a 24 year old young man who had died because his diabetes became too much of a burden for him to carry. 

Its all very overwhelming. I pray that the American politicians listen to what these JDRF delegates have to say.  I pray that the world listens as well. Together we can work towards a cure not just a larger bandaid. Together our children will live long and healthy lives.

The Evil Pancreas Minions vs…well me of course!

I recently went to Chapters and bought myself a few books. I love reading Deepak Chopra whether it be his fictional works or his more serious spiritual works.  He always gets me thinking.  This morning I started reading his book “The Book of Secrets“.  Its all about “Unlocking the Hidden Dimensions of your Life”. 

As I moved through the first few chapters, I read something that sent my mind reeling in a direction that I am positive the author did not intend.  He wrote that intelligence was found in other parts of the body beyond the brain. Organs such as your stomach and liver actually “think”.  This got my over-active imagination heading down cartoon alley.

I could instantly picture what had happened with a diabetes diagnosis.  I have often referred to diabetes as a living thing. I personify its evil nature and discuss it as if it were a spoiled child.  It turns out that I am right! The way I see it, if Type 1 diabetes occurs because of impaired beta functioning in the pancreas then the “brain” of the pancreas has been injured.  The result is confusion and mayhem.  The minions left in the pancreas have no true leader.  Their brains are addled. 

As in any state of chaos, groups or small armies of these minions will form.  They are the evil forces that cause highs and ketones.  A rival gang contributes to lows and people becoming hypo-unaware.  When we speak of the diabetes gods plotting against us, it is in fact these minions plotting and using their injured brains to wreak havoc in their world which creates more insanity in ours. 

I could create an entire movie out of this.  The end result would of course be a cure.  The pancreas would receive the mind altering treatment that it needed to control its evil minions and those living with diabetes would be saved! It would be huge–a true block-buster! The treatment would be delivered not by doctors in lab coats but by super-heroes in cool costumes. 

I can see it all now!! If only we could do this in real life but a small flight of fantasy away from the realities of the evil minions is not so bad is it?

The “LOW” down on a 13 year old’s Party weekend

What a weekend! Friday, my son came home from school and wanted to go to the fair with his friends that evening. Where was the fair? At the other end of the city of course! Well, the school year is coming to a close and some of these boys will be going to a different school from my son in the fall, so I agreed to allow him to go.  He had glucose, meter, pump, cell phone and was set. 

As I picked him up later that evening I was rather amazed. My baby had been out in a city without me or his older brother, walking the streets at night and I had allowed it? He was with a crowd of a dozen or so other young people so there really was no danger involved. It was just scary that he was old enough to have this sort of responsibility.  He had tested and all was fine but I knew that after walking for five hours on a fair ground and goofing around with his pals that Diabetes would get its revenge.  It had behaved while he was out.  There were no lows to worry about so you know that the night would be rough! 

This was one night that I decided to be proactive. I put on his “low” basal was sure I would give myself a small reprieve.  When I tested him at 3am he was perfect. I gave myself a mental high five and went back to bed with a small glow of victory. I had beat Diabetes at is own game this night!! Oh yeah!!

My victory was short lived however. There was to be no sleeping in on this Saturday morning. I hadn’t extended that reduced basal rate and Diabetes took advantage causing him to be low.  We all got up, showered and headed out to breakfast instead. Take that Diabetes!

Later that night was party number two for my social young son.  This party I knew would be active.  A group of boys were headed off into the woods as we arrived but I was more concerned with making sure that he again had all of his supplies so I didn’t think to adjust any basal rates. After a few hours, I sent him a text and asked if he had tested. He said he was just about to do it.  I waited.  An hour later I received a second text..

“I am 3.4.  Took 4 tablets.”

3.4 (62) Crap! but at least he had treated. I called him back and told him to retest and put that “low” basal rate on.  I waited and sent another text asking if he had retested.  He assured me that all was okay. 

We got home after midnight that night and once again I double checked to see if the temporary basal rate was on. This time I also made sure that I reactivated it when I tested during the night. I was going to beat Diabetes this time! Wrong.  I may have delayed things but Diabetes continued to send my son low multiple times during the rest of the day. I was really getting tired of this.

Sunday evening I sat down with the meter, pump and my son. I got out the log book and got serious.  I made carb to insulin ratio adjustments. I analyzed basal rates.  I changed profiles to allow for summer late nights, later mornings and increased activity levels.  Once again I was confident that we would at least see a few days of good readings.
Wrong.  Diabetes kicked my butt once more.  The night was fine but by 8am things were going down hill fast.  3.0 (54), four glucose tablets….3.0(54) another four glucose tablets and a few choice words…5.6 (100) victory but by then I was wide awake. So much for sleeping in on a stormy Monday morning. My son got up as well, complaining that his mouth felt like he had eaten a tonne of sugar…well you did!

I have more changes to make before my son heads off to visit his father for a few weeks. If this keeps up, my nerves will be shot before he heads off on his own.  The reality of diabetes is that once I get these rates just perfect, he will have a growth spurt and we will be fighting highs for the next two months. I so love this windy, twisted road of life with Diabetes…grrr! Give me strength!

Little Fingers

We recently enjoyed the company of a lovely twenty-three month old little girl for a day.  It was a big change for us because other than her, we have no real dealings with small children and haven’t for years.  I see my nephews only once every couple of years and any other children we are around tend to be a lot older.

We learned about Special Agent Oso and Thomas the Train.  She had fun coloring and playing in strange places and I got reacquainted with the art of changing diapers. As lunch time approached, she plopped herself down at the spot where my son had laid out his lunch fixings. He had bread and jam, which she was interested in having herself.  He also had his meter and lancet.  I watched as she looked them both over. I was nervous that she would accidentally lance herself but she just continued to investigate. 

As I watched her, I realized that she is the exact same age that a friend’s daughter was when she was diagnosed with Type 1 diabetes. I remembered that my own child was only a few months older than her when he was diagnosed. I saw those little fingers that wrapped around mine to take me to her next place of discovery and was immediately sent tumbling down the rabbit hole. I remembered that when my son’s fingers were that small I used to have to cover them with blood before he ate. I remembered how he never flinched when I injected him but would refuse to eat anything that was put in front of him. I remembered my tears of frustration and his cheeks bulging with the food that he put in his mouth but would not swallow.  I prayed that she would remain the healthy little girl she currently was and would never experience any pain or disease.

She was soon off again, searching for my son and wondering what her grandfather was doing.  She played with the dogs and eventually sat down to watch TV before having a nap.  I was ready to nap with her but shook it off and made some blueberry muffins instead. 

After a short nap, she was recharged, refreshed and ready to go again.  She found a new place to play under the kitchen table and amused herself for quite awhile.  After some serious playing she had worked up and appetite and looked at my fresh muffins with hunger in her eyes.  I gave her a bit and my son had the rest.  I told him the carb count and automatically calculated the carbs in the piece of muffin and small yogurt that our tiny guest had.  I smiled when I realized how automatic this was and again, I said a small prayer hoping that she would never have to worry about the carb count before eating any of her meals.

For years, I could not look at small children. I would see them toddling off to preschool and entering their kindergarten classroom and the memories would come flooding back. They were so small.  My boys were that age once.  When my youngest was that age he had to bring a meter, spare juice and a needle.  His mother went everywhere with him.  I watched for stumbles that were not from untied laces but from blood glucose that was dropping without warning. There were bumps, bruises and cuts from missteps when low but we had made it to the teen years.

Now he is a tall young man who will soon be looking down on me.  He lives in the fridge and has friends all over town. He spends days away from Mom’s prying eyes.  He boluses and tests on his own.  His hands are calloused from testing and his fingers are no longer covered in blood when he tests.

No one should have to live with this disease but despite it all we are…we are living our life and enjoying each day.

Exams and Diabetes…what a stressful combination!

Exam week is winding down and hopefully so are my nerves. My oldest is very self-sufficient and pretty serious about his grades. My youngest, well this is his first time around.

I find myself nervous for both of them. I want them to do well. I check in with both of them each day. I am sending good luck and wisdom vibes each morning. They are both great students so they should do quite fine but there is always worry.  Diabetes has added an entire new level of anxiety to the equation however.

As I have mentioned, we had been dealing with low, low, low and yep, more lows. I have dropped basal rates, added temporary rates, and changed carb to insulin ratios.  Because he is in exams for only the morning and then off for the rest of the day, I had seriously thought of switching him over to our “weekend” basal rate.  Then came the anxiety.

He was perfect on Monday for his first exam.  Readings before and after were exactly where I wanted them.  His performance was his own and was not marred by highs or lows.  To change to the weekend pattern would adjust some of the early morning basals.  This could mess with the perfection I had going! I couldn’t do it. I left things as they were, tweaking the “school day” rates.

All night I was anxious.  I had anxiety attacks and woke up feeling horrible.  Did I do right? Would he be okay for day 2? No, not really.  Diabetes decided to mess with that and he ran high for exam number two.  Day three was a bit better.  He seemed in range although I can’t say for sure because he forgot to test when he started the exam but he was in range by the time he was done and reviewing what he had done. 

Today is day four. He knows his stuff cold. Its science and he really seems to understand the concepts.  I am hoping for some positive results so he can see that his hard work (Mom making him study for the past two weeks) really paid off. He is nervous about his last exam but he has decided to meet with his teacher for some extra help today before tomorrow’s exam.  I am excited by the fact that he is beginning to take some responsibility for his grades without too much pestering from Mom.

Two more full days and I am shed myself of the “school days” anxiety.  Two more days and we can fight with basal rates again without fear of messing with school testing. Two more days and I will have about 10 days to get his summer rates sorted before he heads off to spend time with his father and his brother.  That will bring a new load of anxiety and stress as I worry about him testing and bolusing while he is away but we will take one set of worries at a time for now!

Our Pharmacy, Our Friend

I have really come to believe that your pharmacy is the most underrated member of your diabetes team. We often take them for granted but live to complain when things don’t work out as smoothly. They hold all of the power. They can give you the devices you require or they can make you squirm until you get them.

We were exceptionally fortunate for the first 10 years that my son lived with diabetes.  We had the best pharmacy around. They are a small pharmacy that gets to know their clients and always work to do the best by them. 

They showed us new meters to try in the early years when I was having trouble finding the perfect fit for us.  They helped with insurance forms and government paperwork to ensure that my son always had everything he needed.  They became our friends.  We spoke of our children.  We offered help to each other when it was needed.  They truly cared. 

We now live in a larger area and go to a pharmacy that is not nearly as personal.  One of the pharmacists from our old pharmacy offered to “hook me up”  with a pharmacy in the general area but it is a bit out of the way so I have continued along with the place ten minutes down the road.

It has been a bit annoying having to go back to submitting my own slips each time to have the money reimbursed for my son’s supplies but that is what happens when you are no longer in a small community that knows your son’s insurance provider.

Yesterday brought me hurdling back in time to when we first moved here.  Changes and a pharmacy that did not know us equated to a lot of trauma. Its been a year but I still won’t say that they know us yet.  I still go to the pharmacy on a regular basis and spend an obscene amount of money on insulin and test strips.  They are quite nice but its the bureaucracy that they seem to be swimming in that we did not have to experience before.

For example, last night, it was a Sunday and I figured a perfect night to get my son’s supplies reordered.  Everyone else thought the same thing it would appear and the counter was very busy.  I asked for AccuChek Mobile test strips.  They didn’t have any.  They didn’t know we, or anyone else, were using them and the woman who orders them hadn’t restocked. She questioned if my insurance would cover them. I said that they have always covered any strip we chose to use so I was not worried about these ones. She then state that I could get them the next day which was fine by me.

She went on to tell me that my son’s prescriptions had expired.  They had been telling me this for the last three or four times I had gone in.  Once again I explained that no, the prescriptions were all refilled by his doctor in April.  They said that some of the prescriptions were refilled but the doctor had not specified that he needed insulin so it was not renewed. 

Okay, they said that he needed pumps supplies, syringes and such but not insulin? According to the technician, they had missed the insulin and his prescription had expired. They would give me more but I had to contact his doctor and get this prescribed.

I left shaking my head.  This was just weird. I could not imagine them missing insulin.  Bright and early the next morning, I was in contact with the hospital and asking about the prescription.  The secretary pulled my son’s file and said that they had requested insulin.  She resent the complete prescription to the pharmacy and asked me to call them. If they didn’t have things straight then she would call.
I waited until I was sure that the pharmacy was open and I placed my call.  After five minutes of confusion, checking files, checking the fax and finally checking with the pharmacist, she assured me that yes, they finally did have the insulin prescription.  All was well and he was good to go for another year.

My nerves! I know I was terribly spoiled before. I know our old team was just too good to us. I understand that this is a larger center. I understand that I have made this choice because of convenience.  I guess it could be worse but boy do I ever still miss the old pharmacy team. We will see how things go. I may have to take that longer drive to a different pharmacy yet.

The “Lord help me!” Basal

As I mentioned before, it is technically trying to head into summer here.  Temperatures have been all over the map for the past few weeks and more than two hours of sunshine at any given time is considered a miracle.  Despite that fact, my son has been more active than ever.  He is out playing hockey with friends in the neighborhood, at school and in other people’s neighbourhoods.  We have had him mowing grass and helping with renovations to the backyard.  He has been a busy boy and his blood glucose levels are beginning to tell the tale.

We have gone from rarely seeing numbers in the two’s (36+) to having a new favorite number of 2.9 (52). He was 2.9 at 9pm.  He was 2.9 at 3:30am. He was 2.9 at 10:30am.  He was 2.9 at 2pm.  You get the idea. 

I obviously have some serious basal adjusting to do. In the meantime, I have been trying to ward off all of these lows.  We have an “active day” basal for things like sports days or times when we know he will be on the go for at least eight hours.  We also have a “LO” basal for those nights when I have been fighting lows and nothing seems to work.  Because we have rain, sunshine, drizzle, rain, and then sunshine, I have been using the “LO” basal.  It gives us two hours of reduced basal rather than dropping things for the entire day.

Today  after umpteen lows, juices, and retesting, I reminded him about the “LO” basal.  As I was talking to him, my brain thought, “To heck with a LO basal or an Active Day basal.  What we really need is a ‘Lord help me!’ basal.”  It would be the one you push when you are clean out of options.  You would implement that basal when you felt you have colossally failed as a pancreas and need divine intervention.  It was for those times when highs would not come down no matter what you do and lows refuse to respond to any of your treatments. 
With summer coming and my children away from my for much longer than I would like, a “Lord help me!” basal would also be perfect to keep him safe when he is away.  I would set it before he travels for any length of time and could truly rest while he was gone.  This is definitely the solution to many of my worries. Its not a cure but it would help reduce the rapid increase of grey “worry” hairs that I continue to get.  I mean, Divine assistance? That could be pretty powerful!
Alright pump companies, get on that phone and see if you can get a direct line to a higher
 power. Ask him/her to work with you on that new basal rates for frazzled parents and people with diabetes please.