Monday, May 18, 2015

Day 7

Day 7. " was to help connect our blogging community, and that continues to be the most important reason it's held every year.  So let's help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you've found or a new friend you've made.  Or pick a random blog off of the Participant's List, check it out and share it with us.  Let's take some time today to make new friends."

I read a lot of new words this week and they were so inspiring.  So many blogs to continue reading.  So many new thoughts and ideas.  One of the most informative for me this week was http://momofat1teen.blogspot.com/2015/05/keep-it-to-yourself-glucagon.html

This week was fun blogging.  It was difficult for me to keep up since both the boys have been sick all week.  I look forward to catching up on all the posts I haven't had a chance to read yet.

Sunday, May 17, 2015

Journaling

Day 6. "u have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.)"

I can't pick.  I have more than 100 blogs to choose from but I'll be honest, I don't like my writing.  I write because I have to.  It's cathartic.  I journal.  It's like my very own diabetes diary.  I really think that no one will read it when I'm writing.  It works best for me.  I blog because this disease and my boys' diagnoses changed all our lives and those first scary days and weeks it was the blogs, forums, the words on the Internet I turned to for support, tips, understanding, and comfort.  I turned to the people who get it.  They live it.  So now i write because I have to.  I'm driven.  I hope it might help someone the way those first words I found helped me.

Saturday, May 16, 2015

On a Roll

Day 5 Taking a cue from Adam Brown's recent post, write a post documenting what you eat in a day!  Feel free to add links to recommended recipes/shops/whatever.  Make it an ideal day or a come-as-you-are day – no judgments either way.  (Thank you, Katy of  Bigfoot Child Have Diabetes for this topic.)

I have a love/hate relationship with food.  I know the difference good choices makes but I realize the balance that comes with comfort food and easy picks.  Many times money plays a roll.  See what I did there?  Lol

I have a habit of skipping meals for me.  I try and stretch what is available for my husband and boys as much as I can.  Food is a priority for them.  I try and make it work, but i don't cook enough.  Working retail, my schedule is crazy.  I'm not home regularly for dinner.  Yesterday I had a coffee, very berry sundae, a sandwich and curly fries for all my meals.  Definitely not the healthiest choice for me.  

I love fresh fruits.  I love smoothies.  My vitamix is waiting patiently.  I wish eating well wasn't so expensive.  So I will keep trying.  Maybe I'll have a smoothie today.

Thursday, May 14, 2015

Yes Please

Today let's talk about changes, in one of two ways.  Either tell us what you'd most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

There is a link being shared on facebook.  The link takes you to a number of greeting cards that were created by a cancer survivor.  They are great and got me thinking.  In the short time my boys have had Type 1 we have had some doozy of comments, everything from herbal cures, sugar causes it, to it can't be that bad.  I decided last night to ask the boys if they could only say one thing to someone about their disease what would it be.  Sugar Bear said "I wish they knew it is serious."  And Drago said, "I'd want them to not judge."  I think the cards created by that cancer survivor came about exactly because of these two things.  I get the not knowing what to say when there is a loss or serious illness.  I've been there, done that.  Our society paints a perfect picture of positivity and when something goes "bad" we don't have the tools to always handle it.  We weren't taught.  What we don't know makes us uncomfortable.  It makes us uneasy.



"I wish they knew it is serious."  How bad can it be?  I mean, it's not cancer.  They can live a full life. They can do pretty much anything they want (within reason--they'll never be in the military, fly planes commercially, or drive commercially).  So why would this be something on Sugar Bear's mind?  A typical day has him waking and having breakfast at 8am, but before he even eats we check his blood glucose with a needle.  Anyone who thinks that doesn't hurt should check theirs, 8-10 times/day every. Single. Day.  Okay, so that's a "minor" inconvenience.  After checking then it is time to add up the carbohydrates in his meal.  We try to stick between 40 and 60.  Just for your amusement, a glass of milk has 8-16 carbs for one 8ounce glass.  Okay, after we've done that it's more math to figure out how much artificial insulin to dose.  And this is where it gets "serious".  I don't mean the pain of the shot, or the time, or the hassle is "serious".  It is the insulin.  Too much and he risks going low, seizures, and death.  Too little and he goes high which can cause DKA, coma, death, and just that serious thing of later in life complications like blindness, amputations, heart failure.  We are not a pancreas.  We aren't as terrific as what our own organ does naturally.  It's scary to think that human error could be so devastating.  And we do this and these calculations every single time he eats.    And he has one other insulin he takes, not the one for meals.  This one is the long lasting one.  It's the one that is injected at 10pm once a day.  It's the one that keeps him from going super high, that helps with the use of blood glucose from the breakdown of proteins and fats.  It's the background insulin.  And all of this is a "normal" day.  When you add exercise, stress, and all the other variables in life it can get confusing and overwhelming.  And when you are sick it takes it all to a whole new level.  So, yup, it is serious.  It doesn't go away.  The only constant is that it always changes in the way we keep managing it.  It isn't controllable.  We can only do our best with the life saving tools we have at hand.




"I'd want them to not judge."  Oh wow, this one.  Coming from a newly diagnosed teen.  How to approach this subject.  Not easy.  We all make judgement calls.  Sometimes those are necessary.  I'm thinking in emergency situations.  But I know precisely where he is coming from for this statement.  The first thing people seem to think when you mention diabetes is that you yourself somehow caused it therefore they don't have to worry about getting it because they wouldn't make the same choices you would make.  And that if you would just change xyz you would get better.  Diabetes doesn't care if you are a baby, a child, or an adult.  It doesn't care about skin color or your religion. It doesn't care if you only eat raw organic vegetables or McDs for every meal.  When an organ in your body stops doing what it is supposed to, there should be no judgement.  No "well that's why" comments.  And when the emotions run over because of that disease and how it is effecting you, comfort and understanding would be preferable.



I work towards awareness and education so that changes can happen.  Especially in the way our relationships interact after a diagnosis of diabetes.  I don't like the stigma that the word diabetes conjures for society.  We all need to change.  Yes it is serious and please don't judge.


Wednesday, May 13, 2015

Trash Day

Day 3
"Yesterday we kept stuff in, so today let's clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)"

Wednesday's are trash day here so this prompt is timely.  

We have the kits that always seem to collect used strips, lancets, and bloody paper even with designated altoid boxes in each kit for such items.  We have the biohazard bin in one room, two salsa jars in bedrooms, a milk jug, and a diet coke container for pen needles and lancets always overflowing.  No matter how hard we try, we feel like diabetes trash is everywhere.  And then there are the unused supplies, tools, and insulin.  It creeps into every room.  It shows up in unexpected places.  When each kid is checking blood sugars 8-10x/day that's 20 strips and 20 lancets plus 40 times that blood has been wiped on something.  Then the shots, 4-6 times for each kid each day.  And then alcohol swabs and ketone strips and the extra cover on the pen needles and well it's a never ending battle, just like diabetes.  Some days are better than others and when we remember to take the trash out it makes a difference.  


It's better when we don't internalize.






Tuesday, May 12, 2015

Secrets

Day 2

Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won't tell them.) (Thank you Scott E of Rolling in the D for this topic.)

I'm not very secretive on my blog.  I pretty much tell it like it is.  I believe strongly in honest discourse to make changes so that is how I approach my writing.  What I do keep private is the full extant of the impact this disease has had on us and how much some things have hurt.  I draw the line at intentionally hurting or embarrassing people in our lives with what I write.  I try to stick to my own internal feelings as a caregiver of my Type 1 children and my Type 2 hubby.  Sometimes that is more difficult than other times.  

I don't talk much about how the emotions that go with high and low blood sugars effect me.  I don't have the disease and I know it isn't my husband or children's fault that their lashing out during those times hurts me.  I try to build a thicker skin.  I try to look at all of this through their lens.  It's not easy being the caregiver.  So with my blog I try to paint their picture and through that painting it helps me to understand maybe just a little more what they go through.  I'll never know fully because I don't walk in their shoes, but I walk beside them and diabetes won't change that.

Monday, May 11, 2015

O, boy.

Last year we were newly diagnosed Type 1 with our youngest and participated in the DBlog week.  It was fantastic and it's time again for another DBlog week.  The first prompt has us talking about "I Can".  Here's a little more info:

In the UK, there was a diabetes blog theme of "I can...”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren't sure you could?  Or what have you done that you've been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)

O boy!  When I was pregnant with our now 14 year old son, Drago, I was planning a homebirth.  It was my first pregnancy and I did everything right.  I ate healthy, was vegetarian, had terrific support, read absolutely everything I could get my hands on about pregnancy, labor, and birth.  But at the end of my pregnancy, I developed pre-eclampsia, was put on bed rest and eventually ended up in the hospital being induced.  A very far jump away from my dreams.  Being needle phobic it took a lot for me to handle the end of my pregnancy with all the blood draws and IVs.  It looked completely different than I envisioned it.  But I got through my pits in induced labor and birthed a beautiful baby boy without pain medication.  I did it because, at the time, there was flooding in Mozambique and I had heard a story on the news of a pregnant woman giving birth in a tree over flood waters.  That nameless woman was so inspiring.  If she could do it in those circumstances then surely I could handle birthing a baby in a soft bed with doctors and nurses helping me.  I can and I did.  



Fourteen years later and that beautiful baby boy was recently diagnosed with Type 1.  Just like his younger brother.  Well, not exactly.  I caught it early enough we avoided DKA and a hospital stay.  But now both of my children require shots.  Type 1 comes with a lot of needles.  And I am needle phobic.  So is Drago.  But we are getting through it.  We do it because we have to.  We get through it with support.  We don't have a choice.  We can do this because we already are and so many others already have.  The Diabetes community is overflowing with some of the most inspiring and amazing people.  If they can, we can.  We can because we do.  We're stronger together.  We inspire each other. With every challenge and obstacle overcome we keep moving forward.  We do things we never thought we could.  We have to.  We can!

Sunday, May 3, 2015

Easier

Hubby is back after being gone Wednesday evening to Saturday evening.  He had a beautiful wedding he was in in another state.  He had a lovely time.  We missed him.  We survived.

Even though he is disabled he does a lot and it's never more noticeable than when he is gone.  Out of those three middle of the night checks I only managed to wake for one.  Typically my husband wakes me with a gentle nudge and persistent verbal "come on, you got to get up and check the boys".  He tried on those other two nights from another state to wake me by calling, but three alarms and a ringing phone didn't work.  Thursday and Saturday morning I woke in a panic, especially since both the boys didn't feel well while Dad was away and that can cause havoc with blood sugars (both high and low).  I did get all the bedtime and midnight checks done and those mornings I didn't make the 3am I checked between 4:30 and 5:30.

I couldn't work while hubby was gone because we have no one that will take on the challenge of taking care of the boys and their health needs. And I didn't ask.  We could have tried to go with him but I didn't know until the last moment that I would also have Thursday off.  I had requested Friday and Saturday (wedding was Friday) and originally Thursday and was denied for that day.  Anyway, traveling isn't always easy with just one Type 1, much less two.  So we stayed home and I couldn't work and he went on his own.  It makes it challenging.  He does a lot during the day when he is home and he is almost always home.  He is the lifesaver; he makes it okay for me to work.  I know of single Moms that have lost their jobs because they have no one to watch their Type 1 child while at work.  He does his best to make it easy and as normal as possible for us.  Even being disabled, he perseveres.  I don't even want to know what I would do without him.

This life we have isn't easy.  We have been through much in a very short time.  In 2009, hubby had both his knees replaced at the same time.  In 2010, Drago broke his growth plate in his ankle, twice.  In 2011, hubby was diagnosed with Type 2, declared permanently disabled and Drago injured his knee.  I had shoulder surgery in 2012.  The end of 2013, Sugar Bear was diagnosed Type 1.  And last year Drago got a concussion and I herniated four discs.  And now Drago is also Type 1.  We have dealt with a lot of health issues in a short period of time.  Oh and somewhere in there hubby had emergency gallbladder surgery which ended up being gangrenous, I think that was 2011.  Every year these past few years have seen some major health issues, a lot of hospitals, doctors and physical therapy.  Not easy.

So I'm happy to have my little family all back together.  We function better when all are involved.  We work like a team.  I couldn't do this without him.  He makes it easier.

Friday, May 1, 2015

100

My 100th post.  Kinda special right.  So many things I could talk about but since it's the 100th post I thought I'd concentrate on numbers.  Why is 100 special?

We give 100s in school on tests for a perfect score.  It's a measurement with that number at the top.  So what exactly does it mean to get a 100 on a blood sugar check?  If you ask my boys they would tell you it means they get a dollar and money is a big deal to them.  When we first made that arrangement we thought that getting that result was pretty rare.  Sugar Bear proved us wrong multiple times last year and has already had a handful this year.  And newly diagnosed Drago easily joined the club.  Does that mean we got this figured out?  That we're doing something right?

No, it's just a number like 99 or 101 or even 289 or 68.  All numbers we've seen today.  We take each number as they come.  I have noticed my "comfort" with numbers has changed.  When Sugar Bear was first diagnosed a 200-250 would have me panicked.  It's different now.  Now it's not just the number but the symptoms that go with it. Is he sweaty, headachy, irritable with the high number.  If one of the boys has a number like 70 (which is a low) but don't feel shaky, not pale, etc...I seem to be less "worried".  I'm not sure if I'm explaining this well.  But my relationship with numbers, and specifically blood glucose numbers is changing.

I've never been a numbers person.  In high school I'd much rather write an essay or read a novel than do algebraic equations.  I hated around the world with Math facts.  Doing computations fast has never been my strong suit.  But now.....I still don't enjoy it but I'm more comfortable.  Numbers scare me less than they did.  And we take each as they come.  We strive to stay between 80-150 but in the realm of possible numbers and variables we don't even know about, some days and sometimes weeks that is a difficult endeavor.  100 isn't special.  It's just a number, but sometimes it can give us direction.  Sometimes when the numbers have been beyond that 150, it's nice to see a 100.