Tuesday, November 26, 2013

Thanksgiving

This Thanksgiving is another first event for our family. It is the first thanksgiving since diagnosis. We will be spending the day with family. It is always hard for me to not hover and Thursday will not be different. I don't know what kinds of food will be around. I won't know serving sizes, how many carbs are in the foods. Talk about increased stress level! I can feel the stress now.

Monday, November 25, 2013

Need a new year

We often tell people who have had many struggles during the year that we hope they have a better year next year.  Or "I bet you can't wait for the new year."  In fact, this comment was made to me today.  I know what the person meant when it was said but it got me thinking.  Nathanael has had a tough year.  But next year isn't going to be much better.  He will still have diabetes.  He will still struggle to maintain his blood sugar.  Yes I do hope that next year is better.  He has had a tough year.  He was diagnosed in April.  He has had colds, like most kids do.  He jammed his finger and managed to chip a bone in that finger.  He sprained his ankle 3 times this year, the same ankle.  To top it off, I hope, he fell in the shower last night and hurt his back.  So I do hope that next year is better.  But he is 12 and has accidents and will get colds.  Unfortunately until there is a cure,  he will still have diabetes.

Sunday, November 24, 2013

The daily yo-yo

I think the hardest part of diabetes is that everyday is different.  Yesterday, Nathanael had a really good day. He woke up with a really good number and stayed low all day. (In the lower to mid 100's) We were able to just count carbs and take enough insulin to cover what he was eating and not add anything for a correction. His highest number all day was 188.  He hasn't been this good in a while.  It seems that he has only been chasing his blood sugar and yesterday was not like that. Yesterday during bowling, he was starting to get cranky and not bowl so well.  I gave him some beef jerky and he got his head back in the game.  His response was, maybe I was just hungry.  Sometimes he just doesn't know if he is hungry.

Today has been a completely different day.  He woke up with a blood sugar of 266.  He was acting like he just didn't feel well.  By the time he ate breakfast an hour later, he had risen to 276.  Then after church, 3 hours later, he was in the 300's.  Technically, he blood sugar should be the lowest 3 hours later.  The Novolog is good for 4 hours.  He gets so frustrated when his blood sugar is high and there is no reasonable explanation of why.  Then he tends to over compensate on his insulin for lunch.  He took a fairly large shot and ate some lunch.  He is now finally under 200.  Will he stay there?  I have no idea.  That's what's so frustrating.  Different foods behave so different in his system.  Then if you combine foods, who knows how they will react to him.  Never ending saga.  What was life like before diabetes?  It is hard to remember and it's only been 6 months. We definitely have it easier than a lot of people but it is still a daily struggle, not knowing what the day will be like.

Thursday, November 21, 2013

Diabetes & the whole family

Diabetes effects the whole family.  Everyone in the house has had to learn how to check blood sugar and give shots.  This proves to be challenging to do during the night.  I'm getting pretty good at checking blood sugar.  The hardest part is when he pulls his hand away just as I am ready to get the drop of blood on the test strip.  He never wakes up completely and he never remembers me coming to his room.  We are also very fortunate that he doesn't drop to dangerous lows during the night so I do not need to check him during the night.  Because we have been getting up so early in the morning, Nathanael goes to bed quite early.  So I end up giving him his Levemir shortly after 9.  This is when I check his blood sugar.

The whole family is learning how to count carbs and to measure our food.  When we dish our plates, everyone has to dish their plate into servings.  We go through a lot of measuring cups in a day.  (Some people use their measuring cups to bake each day, we use ours to fix our plates.)  To make it easier for him at school, I write the carb count on the zip lock bags that contain his food.  He is learning to adapt when eating.  There are times that he gets full and cannot finish his plate.  This can be very bad because he took a shot for the amount of carbs on his plate.  There are times he will drink a glass of milk to compensate for the carbs that he will not be eating.

Another frustrating part about about blood sugar is that it is completely unpredictable.  He can go to bed with good levels and he wakes up high.  This took me a long time to figure out.  I still don't understand it. Our bodies go through a reset during the night and this causes blood sugar to rise.  He probably wouldn't be starting high if he was able to sleep a couple more hours.  He gets so upset when he is high.  He tries so hard to keep it down.  Sometimes he over compensates and takes too much insulin.  (This causes an entirely new problem.  When he drops too fast, he doesn't feel well.  He gets a headache and he feels like he's going to be sick.)  Today has been a good day.  He started at 176 and at 10 AM which is 4 hours after his first shot, he was actually lower.  Then at lunch he was below 100.  This hasn't happened ever at school.

Another frustration about diabetes is that every day is different.  We have been very fortunate to not have to deal with too many lows.  Nathanael tends to run high most days.  Luckily he stays in the 200's. Ideally we would like him to stay closer to 100 but that is really hard.  Especially when you are a 12 year old boy.  All he wants to do is eat.  Foods that have low or no carbs are expensive and don't last long around the house. (Not to say that we kept a lot of junk food around the house.  But I never use to buy beef jerkey on a regular basis.  I also didn't always keep nuts of some sort around the house.) So what ends up happening when he is home by himself after school is he eats and then doesn't realize how much he had and then when I get home from work his blood sugar is out of control.  It sure would be nice to be able to take a pill and make it better.

The past six months has been filled with many firsts.  I feel like Nathanael is starting life over.  He is experiencing everything all over again.  He had his first sleep over having diabetes, he went to Bible camp for a week. (That was stressful on me!!)  We went through our first Halloween.  Halloween proved to be a little easier than I thought it would be.  He participated in trunk or treat at the church and brought home a bag of candy.  He mixed his candy with the candy we bought for Halloween.  We only had a small amount left.  I have put it away and give out a few pieces at a time.  He doesn't ask for it like he had in the past.  It is nice to have some candy around to take with us to use if he goes low.  Coming up next week is his first Thanksgiving.  He will be eating foods that he hasn't eaten since diagnosis.  There are just some foods we avoid.  Food is so hard when a person you love has diabetes!

Sunday, November 17, 2013

Struggle, Battle, which is it?

Last night the kids and I went to a ballet where a portion of the proceeds were going to go to the diabetic care needs at the local hospital.  It was being done because one of the dancers battles Type 1 Diabetes.  During the performance, I was thinking about the term battle.  When I hear the word battle, I think of a war where there is a winner and a loser.  Is that what it is like for a person with diabetes?  Is there going to be a winner and a loser?  I think of people with cancer.  You always hear that "they are battling breast cancer."  But with cancer, people go into remission and they essentially win the battle.  Do people with diabetes ever really win?  This is a daily struggle, a daily fight.  Sometimes diabetes ends up winning but does the person who has it wins? People with diabetes have a tougher time when they get other illnesses.  Diabetes makes it more difficult to fight illnesses.

Less than two months after Nathanael was diagnosed, I was speaking with a lady that I have known most of my life.  Her son has diabetes.  I referred to Nathanael as a diabetic.  She told me that she never refers to her son as a diabetic.  He HAS diabetes.  Diabetes doesn't define who he is.  She was right.  I think about this often and remind Nathanael that diabetes is an illness that he has, the illness doesn't have him. Nathanael IS a 12 year old boy.  He IS very musical.  He plays 3 instruments, the baritone, tuba, & trombone.  He IS very smart.  He IS also very athletic.  He HAS an auto immune disease called type 1 diabetes.

Nathanael considers his diabetes frustrating, not a battle.   I certainly don't consider it a battle.  Unless there is a cure, there isn't going to be a winner or a loser, If I have anything to say about it.  If there has to be a winner, it won't be diabetes.  Nathanael is tougher that this terrible disease that has taken over and forever changed the way we look at food.

Friday, November 15, 2013

Thankful

All month long, many of my friends on Facebook are posting each day what they are thankful for.  I have not participated in this online but I do reflect each day what I'm thankful for.

I do a lot of reading on different diabetic sites.  One site the other day posted a question on how much do you pay for your medical supplies each month.  I read through all the comments and thought WOW!  We are so lucky that our monthly expenses are pretty low.  Nathanael's Novolog is a $15 co-pay every five or six weeks depending on how high he has been and how many carbs he has been eating.  His needles for his pens are also a $15 co-pay and those last just a little over a month as well.  Then his night time medication, Levemir, is more expensive.  It is $40 but this also lasts about 6 weeks.  The one item that we don't make it a whole 30 days is test strips.  Nathanael tests his blood sugar often.  He doesn't have a constant monitor or a pump so the only way to know where he is at is to test.  I am very thankful for the benefits plan that we have where they value diabetic medications and make it affordable.  Also, when he has to go to the doctor for his 3 month check up, that is only $15 a visit.

The other thing I am thankful for is for one provision in the Affordable Care Act otherwise known as Obamacare.  I do not voice my political views.  I do believe that health care needs to be reformed and am not a huge proponent of Obamacare but one requirement in the law is a very good idea.  It is the pre-existing condition waiver.  I find my self thinking more and more about Nathanael's future.  With this waiver, he will never be denied health insurance if he one day ends up going without for a period of time. I never really thought about pre-existing conditions before and what they may entail. Now everywhere I turn diabetes is always being mentioned for one reason or another.  

The other thing I'm thankful for is that Nathanael's diabetes isn't as bad as it could be.  He was not diagnosed with a blood sugar level so severe that he needs to be hospitalized.  He also hasn't had any problems with Diabetic Ketoacidosis (DKA).  That is a condition in which he doesn't have enough insulin in his body.  Even when his blood sugar has been high for a few days, he still has no ketones.  It is my hope that we can continue to stay away from DKA and visits to the hospital.

Not to just focus on Nathanael, I am thankful for many other things in this world.  I am thankful for a great daughter who may not be my blood but will always be my child.  She has definitely grown into such a funny, smart young woman.  She is a junior in high school and will soon be leaving home and out on her own in just 2 years.  It is hard to believe considering all we have gone through with her.

My life in general hasn't been a piece of cake and there are probably parts I would change if I could.  But if I changed parts of my life, I would not have been given a great son and a great daughter.  Nathanael's name means gift from God.  That is what he has been, a gift. I am very lucky to be his mom.

Thursday, November 14, 2013

Our beginning with Diabetes

I have been thinking about starting a blog for some time now to share my thoughts and experiences with type 1 diabetes.  I have read quite a few stories and even though everyone has the same disease, everyone's experience is different.  I have gained a lot of knowledge from others and it is my hope that others will find knowledge, comfort and hope in my experience with my son, Nathanael.

My son, Nathanael, is 12 years old.  On April 11, 2013, our life was forever changed.  Our journey started in the Spring of 2013 when my son was complaining each day that his stomach hurt.  (Actually, he has been telling me this most of his life.)  There were days that he would tell me that he was really dizzy.  My son can be very dramatic when it comes to not feeling well.  I just passed most of his complaints off and sent him off to school.  I started noticing that his grades were really starting to slip.  He would be working on projects then end up getting a very low grade.  When I asked him about it, he would say that the kids were very distracting in class.  He would also tell me that the teachers weren't teaching or explaining things.  I didn't really know what to think.  My husband and I were thinking that maybe he had attention deficit disorder (ADD).  Some of the symptoms he was describing sounded like ADD.

One day in March, he complained yet again that his stomach hurt.  So I asked him point blank, what is going on at school that you don't want to be there.  He told me that there were some kids picking on him.  Great!  That we could deal with.  So we went to the school and talked to the principal.  We got his schedule changed so he wasn't in class with these boys.  Next, to be on the safe side, I decided to make him an appointment with a doctor just to make sure nothing was seriously wrong.  The doctor asked him some questions and thought that maybe he had some acid reflux.  So he gave us a prescription and off we went.

I started noticing almost immediately him drinking a large amount of water.  I tried getting him to stop drinking so much water.  Because then the next natural event started happening.  He starting having accidents during the night.  I tried to get him to stop drinking so much water.  But he said he was so thirsty.  I was curious why the medication for acid reflux was causing him to be thirsty.  That was the only change we had made so it made sense to me that it was the medication.  I asked a nurse in the office where I work about the effects of the medication he was on.  She said that this particular medication would cause low blood sugar.  I still didn't make any connection to what he was experiencing was diabetes.  Diabetes doesn't run in the family so this was the furthest thought from my mind.

After 3 weeks of washing bed sheets everyday, I took Nathanael off the medication and made an appointment with the doctor.  I was going to have proof that the medication was the cause of him being so thirsty.  Friday April 11 came and we went to the doctor.  As I described to the nurse what we had been experiencing, she then took out a tester to test his blood.  Her comment was "Your mom probably knows what's coming."  The only thing I knew was they were going to test his blood.  I had NO clue why.  The doctor came to get us and as we went to his exam room, he asked Nathanael how he was feeling and doing.  As soon as the door was closed, he said Nathanael has Type 1 Diabetes.  WHAT?  I had no clue what it really was, what it was all about, nothing.  His blood sugar was 540.  Nathanael instantly said, well, I had a cinnamon roll and orange juice for breakfast.  The doctor said, this isn't because of your breakfast.  He said that we would need to go to the hospital and get checked in and he just went on and on with what we needed to do.  We needed to get more comprehensive blood work done.  I was thinking, I don't have time for all of this.  How long will all of this take, we have state bowling tournament out of town this weekend.  We have to bowl.  This can't take too long to get started on medication and still be able to go.

The doctor called the pediatric clinic to have another doctor take over care.  Luckily I have a friend from high school who was his doctor before.  We are now back under her care.  We then went over to the hospital and got blood work done.  While we were waiting for test results, I took Nathanael to school.  While I was waiting at the school, the doctor called.  She told me that we needed to go to her office and wait there.  We were going to get set up with diabetic educator and get started.  The wait wasn't very long and she came in and said yes, he has diabetes. His blood sugar was 586 and his A1C was 12.2.  A1C measures blood sugar levels over the previous 3 months. 12.2 is bad.  It equals blood sugar of over 300.  She said that all his other labs came back pretty good so we did not have to go into the hospital.  THANK YOU!

Our journey then began with an amazing diabetic educator.  My first thoughts were what am I going to feed this kid?  He is going to starve if I have to cut a bunch of food out of his diet.  The first thing the educator told us was that he doesn't have to cut anything he just needs to count carbs and take enough insulin to cover the amount of carbs.  We had a quick lesson is nutrition, counting, & diabetes.  We met with her numerous times within the next week.  I'm sure glad about that.  Because I wasn't remembering much from the first visit, or the second visit.

That first weekend was tough!  We had no clue what we were doing.  His sugars were high, we would give him a shot.  I was getting up at 2 AM checking his blood sugar and giving him shots.  It just wouldn't go down. Then came school.  I am thankful for the school nurse.  She, and all the fill in nurses, were amazing with him.  He spent many hours in the nurses room trying to deal with his stomach aches and high blood sugar.  We tried hard for weeks to break the 200 barrier.  It was a slow and painful process.  I know it was painful for him and his body and it was painful for me to watch him.

He has been such a trooper!  From day one, he said I don't like needles.  He took the bull by the horns and jumped right in.  He has given himself all of his own shots.  The only shots I give him are during the night.  The first couple of times I checked his blood sugar was interesting.  I had no idea where the needle went in.  I had to wake him up to have him help me.  I am getting much better.  Now the hardest part is when he pulls his finger away when I'm squeezing it.

I'm so very proud of him.  At his 3 month check up in July, his A1C was 6.7.  His 6 month check up was up a little to 7.2.  That is a huge difference from where we started.  One theme that is found in everything that I have read about diabetes is that everyday is different than the year before.  That is so very true!  Today was different than yesterday and tomorrow will not be like today.