Thursday, September 8, 2016

4 years

4 years ago we went fishing.

4 years ago my son was sick.

4 years ago we nearly lost him.

4 years ago our world was turned upside down with just a few simple words.

4 years ago Ryan was diagnosed.

This year we reached the half way point.  Ryan has now lived with diabetes for half of his life.  The last 4 years have been filled with ups and downs.  There have been times when life just seemed to move on without a second thought about diabetes.  And then there are times when diabetes knocks us down and stomps a few times, but we get back up and keep going on with life.  The last four years have been a challenge, but they haven't been all bad. 

In the last 4 years I have learned what an amazing person my son is.  He has always been a very go with the flow easy going person, but watching him deal diabetes amazes me.  All the pokes, all the pain, all the frustration he just brushes it off and keeps moving forward.  He never lets diabetes slow him down.  He inspires me to be a better person.

In the last 4 years I have watched my child grow.  When he was first diagnosed Ryan was very shy about his diabetes.  He didn't want people to ask him about it, he didn't want to tell people about it, and he would try to hide whenever he had to test or dose.  This year I watched my son check his blood sugar in front of his friends, this year I watched my son dose for food during a classroom party, this year I watched my son play a game of shirts vs skins with his pump site proudly displayed on his stomach.  Does that mean that he is completely open and okay with talking about it, no, but it means that he is growing more confident in who he is and I respect that.

In the last 4 years I've been incredibly hard on myself.  I have always struggled with self worth, so its easy for me to blame myself for everything that goes wrong.  Every high blood sugar, every high A1C, every time we have run out of a supply, or had to fight with the insurance company I have blamed myself.  So here is where the positive comes from all of that, it has helped me realize that I am stronger than I give myself credit for. When blood sugars are high we adjust, when A1C is high we work even hard to get it down, when the insurance company/pharmacy doesn't do what they are supposed to we fight until Ryan gets what he needs.  I may blame myself for what goes wrong, but I am starting to realize that when things go wrong I fight to make them right.  I'm a work in progress one day at a time.

I expected today to be hard.  For a while I have been dreading the fact that today feels like a milestone, and one that I'm not ready to reach.  But instead of focusing on the fact that Ryan has had diabetes for half of his life I am choosing to focus on all the things that we have learned and all the positive changes that we have faced in the last four years.  So today I hug my son a little tighter and thank God that he is still here, we go to football practice, and then celebrate his life with cookies! 

Thursday, October 8, 2015

Dependent

At what point does being dependent on diabetes devices become a crutch instead of an aid.  Because of a mix-up with fax numbers Ryan is currently without his Dexcom CGM.  It wasn't until he didn't have it that I realized how dependent on Dex we have become. 

We got Dex for Ryan because he didn't always feel when he was low, especially at night, but he was starting to notice during the day. It was a huge relief to hear an alarm at night when Ryan was going low, instead of going into his room with fear in the middle of the night. Over the last year we have grown to become very dependent on Dex, and now that we are without it for a few days part of me is wondering if that's a good thing.

Ryan was at school yesterday, playing and having fun and running around like all the other kids.  When he went up to the office to check his blood sugar for lunch he was sweaty and shaky and his blood sugar was 51.  While this isn't the lowest that he has been it is a blood sugar that he would have previously noticed.  He would have known that he felt dizzy and would have gone to the office to check, but since having Dex he has grown to rely on the alarm. 

I am just as guilty of this.  I can't remember the last time I woke up to my alarm in the middle of the night to check Ryan.  He checks his blood sugar before bed and unless Dex alarms I don't check him until he wakes up for breakfast.  It's been nice being able to sleep through the night and not have to worry that Ryan was going low. 

So the question remains at what point do we become too dependent on our medical devices and complacent with our diabetes care.  We have these devices to make living with diabetes a little easier, but if we rely on them too much do they become a hindrance or a crutch? I wouldn't change the peace of mind that I get from Ryan having his CGM, but maybe this break will help us to trust our instincts again and not rely so much on the beeps. 

Thursday, March 26, 2015

Spring has Sprung.....and so has Diabetes

Its officially spring here in southern California and that means hotter weather, seasonal allergies, and a lot more outdoor activity.  Unfortunately it also means higher blood sugars. 

Almost all of Ryan's numbers shot into the 300s and despite correction after correction they wouldn't budge.  It was as if his insulin turned into water over night.  Basal rates get jacked up and carb ratios get dropped.  And slowly we start to see numbers back in range.  The whole process takes about 2 weeks to get figured out and rebalanced.

Then guess what happens

That's right low low low!  His body adjusts to the heat and his blood sugars plummet.  All those changes we spent weeks making and adjusting are now causing his numbers to be low.  He is spending more time below 70 then he is above it and has eaten more sugar in the last 3 days then he has in a whole month.  So we will spend the next few weeks readjusting and making more changes. Some ratios will stay the same, others will go back to what they were before, and some may even go lower than they were.  Its all a guessing game with diabetes.  You make a change and hope it works if it doesn't then you readjust and try again. There is no guidebook and there is no perfect answer the best you can do is try.  That's just life with D

Friday, March 6, 2015

Handing off the Responsibility

I can't believe that it has been so long since I last blogged.  Life has been so crazy with so much going on that by the time I think about posting days have gone by.  When Ryan was first diagnosed I couldn't imagine that there would ever be a time I wasn't completely consumed by all things diabetes, but here I sit two and half years later trying to think of a time when the day to day was all about diabetes.  We've gotten into a routine, things seems to flow, and when diabetes tries to throw us a curve ball we handle it and move on.  I think that part of this because Ryan is getting older and handling more of this care on his own. Ryan hasn't needed help checking his blood sugar in a long time and thanks to the EZ Carb feature on his pump meter Ryan is even taking control of dosing for most of his meals.  Granted he is only 7 years old so there are times when he needs help but he has become so independent with his management.

Over the last 6 months Dan and I have been able to take day trips on the motorcycle and leave Ryan with our oldest son. He knows how to treat for lows and is able to help Ryan count carbs to dose for lunch. Its been nice not feeling like I'm tied to Ryan by his diabetes.  This past weekend Dan and I went to a state conference in San Diego.  It was the first time since Ryan was diagnosed that  both Dan and I were able to leave over night.  This was a big deal.  Before we left I wrote up instructions for how to change his pump site if it needed it, how to treat lows and highs, and how to manage his diabetes during the middle of the night.  I handed the papers to my mother-in-law and oldest son and we left.  The first night he went low in the middle of the night and the second day he was high all day and required a site change.  They even had to change his DexCom sensor (which they did without instructions, only by Ryan telling them what to do). I never once stressed that he wasn't going to be okay.  In fact other than to call and tell the kids that I love them I didn't even think about picking up my phone to call and see if they were okay.  And that was a HUGE deal!!

I know a time will come when I have to hand over all of the responsibility for his care to Ryan and just have to pray that I have taught him enough and that he does what he is suppose to do. Dan jokes that I will probably call his wife on their honeymoon to make sure that she is taking care of him, but this weekend I feel like I took a huge step toward letting him be more independent and for me in not feeling trapped by diabetes. 

Wednesday, November 5, 2014

What Type Are You?

November is Diabetes Awareness Month which means 30 days of bringing awareness to a disease that is 24 hours a day, 7 days a week, 365 days a year. The month of November hardly seems like enough time, but if even one person learns something then it makes a difference. The key to a cure is in awareness. In a effort to bring awareness to what life with diabetes is like a new health insurance company out of New York and New Jersey called Oscar asked me to write a blog about life outside of Our Life with D. What type am I and not just type 1 or type 2 but who are we outside of this disease.

When everything was new and we were learning how to live our new normal it was very easy to become overwhelmed by everything that goes with diabetes. All the injections, the blood sugar checks, counting carbs, the ratios, and all the numbers. It was so much to take in but the one thing that stuck with me is that Ryan is NOT a type 1 diabetic, he IS a child who happens to have diabetes!! Type 1 diabetes doesn't define Ryan, it's not who he is its just something that he has.

Ryan is an incredibly smart kid. When he was diagnosed he was barely a month into kindergarten, when he was in the hospital he kept asking how was he going to do his homework. He was so worried that he was going to miss learning something important he would race through the work his teacher was sending home and want more when he was done. The month after he returned to school he was student of the month and he hasn't stopped there. He reads as much as he can. He is so proud of himself when he moves up a reading level. He loves math. He's always asking for more work and is working on math objectives ahead of what the teacher is teaching. Ryan is type learner!

Ryan is a very active little boy. He is always outside playing. Climbing trees, riding his bike, digging in the dirt, jumping on the trampoline, or playing with a ball of some kind. It doesn't matter to him what he is doing as long as he is outside doing it. This year Ryan has been playing flag football through our community center. When it first started he seemed interested but like he was just kind of standing there trying to figure out what to do. Now he in the middle of the action trying to learn as many plays as he can. Last week he scored 2 touchdowns, caused a fumble, and pulled the flag so many times. He is constantly on the go. Ryan is type active!

Ryan is one of the sweetest kids I know. He has such a big heart and cares for everyone he meets, although he is not as fond of girls right now something about cooties. When Ryan was a baby he got the nickname mouse because he had such a gentle disposition, he was very mousey. Ryan loves to snuggle and will spend hours just laying against my side. He will come up to me for no reason other than to do so and give me a hug. He always seems to know when I'm having a bad day and he will stop what he is doing just to tell me he loves me. Ryan is type loving!

Ryan is my hero. Diabetes is a lot to live with for anyone. On average Ryan checks his blood sugar 8-10 times a day. That means stabbing a tiny needle into his fingertips and squeezing out a drop of blood. If his blood sugar is low he has to eat something with sugar and wait 15 minutes and then repeat the process all over again. If his blood sugar is high has to be given a correction dose of insulin wait an hour and check again. If its still high then he has to poke again and check for ketones, and possible have a shot of insulin. When Ryan was on injections he had to have a shot of insulin with every meal, a shot of long acting insulin at bedtime, and every high was corrected with another shot. Now that Ryan is on the pump he gets a new site inserted with a needle every 2-3 days. He also has a device called a continuous glucose monitor (CGM) that is another needle inserted every 7 days. But when it comes to dealing with all of this Ryan is amazing! He is very go with the flow. He knows what needs to be done, he does it, and moves on. There are times when he complains about not wanting to have another injection, or not wanting to have to check his blood sugar again but some me anyone who wouldn't. For everything that he has to deal with Ryan is type awesome!!

Diabetes is a big part of Ryan's life because it is so time consuming but it is just one piece of who Ryan is. Making sure that diabetes isn't all that you are is one of the most important part of life with D. So what type are you?

Monday, September 8, 2014

A Letter to New D-Parents

This day kind of snuck up on me, today marks Ryan's 2 year diaversary! I knew that it was coming up but find it hard to believe that it can possible be 2 years since was diagnosed.  I've written about that day so many times and while it is a day that I will never forget its not a day I want to relive.  Today we are choosing to focus on life.  We are choosing to celebrate the last 2 years and the fact that Ryan is still here.  I will take a moment to reflect on all that we have been through in the last 2 years, tonight for desert we will eat doughnuts, (Ryan's request) I will say an extra prayer thanking God for my son, and then life will go on as it normally does.  Today we wont let diabetes win!

In the last month I have had several people contact me and tell me about their friends child who was just diagnosed.  So I thought I would write a letter to all those new D-parents

Dear New D-Parent,

At this moment I'm sure you are feeling overwhelmed, I know that your heart is full of sadness, and I know that you are even a little bit angry.  I know of these things because I have been there.  I have faced that overwhelming feeling of trying to figure out how to count carbs, and dose insulin at the proper ratio, and manage all those blood sugar checks.  I know that it feels like you will never be able to do it and that it seems extremely stressful, but I promise you that it will get easier. 

A time will come when you won't worry about counting carbs because it will just come naturally, you will even get good at figuring out the carbs for foods that don't a nutrition fact.  A time will come when you won't feel overwhelmed about giving a shot of insulin it will just be a part of your day.  And a time will even come when you don't stress so much about all the blood sugar checks.  You will learn that they are all just numbers, treat and move on. 

I'm not going to lie and tell you that it will all be easy.  There will be times when you are stressed, there will be times when you are exhausted, and there will be times when you want to cry.  But the important thing to remember is that you can do this!  You can raise a healthy, normal child who will grow up to become a healthy, normal adult.  You will teach them how to take care of themselves and how to be responsible about their diabetes management and in the mean time they will teach you what it means to be an amazing person. Your child will be your greatest strength in those moments of weakness.  Its incredible how much they take on and have to deal with but they always seem to take in it stride and never let it get them down.  Look at your child when those times get rough and you fill like you can't do it, and remember if they can do it so can you!

It takes a village to raise a child and that statement is even more true when it comes to diabetes.  Reach out to those who have faced this life, reach out to those that know what you are going through and know that we are here for you.  Check out my blog list for others dealing with it and check out their blog lists.  Look for type 1 diabetes on twitter and facebook.  You can even email me.  Never be ashamed to ask for help and always know that you are not alone in this battle!! 

Hang in there, it will get easier!
A D-mom who has been there

Tuesday, July 22, 2014

Job Opening: Full Time Pancreas

Today is #dblogcheck where you are suppose to leave a comment on ever dblog that you read even if its just to say check and let the author know that you read what they took the time to share with the world.

Managing diabetes is a lot of work.  Checking blood sugars, measuring food and counting carbs, calculating the amount of insulin needed for the carbs, factoring in how the carbs will react, will they take a long time to metabolize or are they fast acting, is the blood sugar was high/low, dosing insulin and rechecking blood sugar at every meal.  Then add in factoring how much insulin is needed to manage the glucose the body naturally produces, how active is going to be, whats the weather going to be like, is he getting sick or growing.  All of theses things go into managing diabetes on a daily basis 24 hours a day, 7 days a week, 365 days a year.  Its a full time job being a pancreas!! 

Diabetes burnout is a situation where you become tired off the endless attention that diabetes requires.  In adults with diabetes this often means that they stop taking care of their diabetes.  They stop checking their blood sugar and some even stop taking their insulin.  This can become very dangerous and lead to lots of health complications and even death.  But what does diabetes burnout mean for a child with diabetes and the parent of that child. 

Obviously I would never stop managing Ryan's diabetes, I care about my son and his health too much not to do whatever I can to keep him healthy, but does that mean I don't face diabetes burnout.  What about Ryan, he isn't in charge of managing his diabetes, but does that mean he doesn't face burnout. 

There are times when Ryan doesn't want to check his blood sugar.  When I tell him that its time to check he whines and tired to hide under his blanket.  I can't blame him I wouldn't want to stab a tiny needle into my finger tips 8-10 times a day either.  There are times when Ryan doesn't want to have a site change done.  He pouts and stomps off when I ask him to get the stuff for his site change.  I can't blame him I'm sure it doesn't feel good.  There are times when his sisters are out jumping on the trampoline and he has to sit inside and drink juice to bring his sugar up and he cries about how its not fair.  I don't blame him because its not fair.  To me this is diabetes burnout.  He is tired of dealing with all the things that come with having diabetes.  And I'm sure as the years go on we will deal with other aspects of it, but for now this is how Ryan feels about it. 

There are times when I just want to sleep through the night.  I don't want to wake up and check his blood sugar. (there have even been times when Ive slept through my alarm or turned it off in my sleep because I was just that tired).  There are times when I just want to sit down and eat a hot meal instead of having to count and measure and weigh everything I'm feeding Ryan first and sometimes second before I get to finish my dinner.  There are times when I would love to jump on the back of the motorcycle with Dan and just be able to go for the day without having to worry about being back in time for breakfast/lunch/dinner.  There are times when I would love to just be able to drop my son off for school and kiss him goodbye without worrying about what  his blood sugar is going to do at recess and what he is going to eat for lunch.  To me this is D-mom diabetes burnout.  I would never stop managing Ryan's diabetes care but is doesn't mean that I don't get tired of all the day-to-day that is involved in our life with D. 

I know that right now its just a funk we are in and eventually it will pass and we will get back to life where diabetes doesn't feel like such a burden, but for right now we are smack dab in the middle of diabetes burnout.  So in the mean time.......

Job Opening: Full Time Pancreas.  Responsibilities: taking care of and managing the duties of 6 year old's non-functions pancreas. Time: 24/7/365

Any takers?!?  Anyone?!?    No.  Well at least I tried  ; )