Me

I haven't slept well in months.  I'm not eating great.  I've never known how to relax well.  It all caught up to me last night.  I think I have a cold coming on and the other night I couldn't stop shaking.  I have PVC (preventricular contractions) that were diagnosed and caught on a strip at the ER about a year and a half ago.  The PVCs have been acting up.  I've been dizzy.  I've had shortness of breath and tightness in my chest.  Two nights ago I couldn't get warm.  I did Sugar Bear's dinner and insulin and his bedtime snack.  Hubby did the Lantus and testing at midnight.  He also took super good care of me.  It's the first night in two months I slept more than three hours at a time.  I still did the 3am check and got up with our older son for school at 5:30.  Hubby force fed me a burger stating he thinks I'm anemic. He may be right.  I feel a bit better.  I don't know if it's because of the burger or REM sleep or maybe both, but I feel a little bit more normal.  I also feel guilty for not being able to help with the teenager's homework and not taking care of Sugar Bear like I normally do.  I'm lucky to have my hubby.  He's a wonderful man, but I hate adding to his burden.

"Warning, graphic and disturbing pics part of post". Silver Linings

Doing some research on the history of juvenile diabetes and insulin and came across two pics of some of the first children treated with insulin.  These pics were taken in the early 1920s.  Before that time a diagnosis of type 1 was a death sentence.  Looking at these pictures I was struck by the starvation.  The phrase "you must have been starving" isn't so cavalier for me anymore.  My son was starving.  He had food but his cells were starving without the insulin. He would have died a hundred years ago.  I wish I knew these children's stories.  I will be researching more and more on all of this.  I'd love to take a trip to London, Ontario and visit the fire that is lit and will stay lit til there is a cure.  I'm thankful for the many silver linings that I have found.  I am grateful for the pioneers and the scientists. I am so blessed that my Sugar Bear was born in 2005 and not 1910.  He won't be able to do the military (and I'm okay with that).  He'll have obstacles and challenges but he'll also have conveniences that were not available even 50 or 30 years ago.  Every year there are improvements and discoveries.  I have hope. 

20/20

In hind site I now know what should have been sending red flags up that something was wrong with Sugar Bear last fall.  He'd lost weight (I rationalized that he was growing and reverting back to what he was more like as a toddler),  he had more bed wetting incidents and accidents during the day (he'd always had accidents they just seemed to increase and I thought it had to do with his brother leaving and going to school for the first time and that Sugar Bear was stressed because of that),  and his irritability seemed out of control (one that stands out was at Halloween when he had over an hour long meltdown about clothing!  But friends were having their children accessed for autism spectrum and I thought maybe that was what I should look into).  I was able to rationalize all the red flags away.  I feel so guilty about that.
Today Sugar Bear had his second visit with his endocrinologist.  It's been almost two months since diagnosis.  They tested his Ha1C today.  When he was diagnosed and in DKA it was 13.7.  Today it is 8.6 and the doctor said she thinks it's probably even lower than that based on his most recent readings!

 We changed one ratio, lunch time, and talked about numerous questions I had.  All was answered.  We're picking up the new lantus pen and no more syringes!  (At least for now).  Sugar Bear is excited for that change.  We talked a little about the pump and the CGM.  We also talked about the weird pain he had on day just on his right side.  She looked at his feet.  And then she discussed with us how it will eventually be important for our little man to wear socks (he hates socks and tends to go barefoot in his shoes).  We also talked about other places we might test BS besides fingers.  She said he's gained his weight back which is fantastic and that he's looking really great!  We had a fantastic appointment.  I feel like we got an A on our report card!  I know not every appointment will feel like this so I'm going to enjoy it while I can.  Our next appointment isn't for 3 months at which point they'll test the Ha1c and his thyroid and we'll get blood drawn from the thirteen year old and us for the TRIALNET research.

After the appointment I went and got my hair done.  I was supposed to go in before Christmas so it'd been awhile.  Talking to my hairdresser I found out her mother (she's in her 60s with kidney failure) has been a type 1 since her diagnosis at 5yo!  She's been on the pump for many years and loves it.

Choice

Changes in carb ratios again.

 Have another endo appointment this thursday.  We have lots of questions.

 The pen works better for all of us.  Now to see if we can do his nighttime insulin with a pen as well. 

I read an article today on a possible link between type 1 and cleanliness.
 http://www.iol.co.za/lifestyle/link-between-diabetes-and-cleanliness-1.1647400#.UwFZMbSWk8A
The thing is we've never been super clean.  He's always been my "feral" child.  He'd eat mulch at my older son's baseball games when he was a toddler.  Everything went into his mouth.  We have pets.  He hates to be clean unlike his older brother who washes his hands incessantly.  If anything I think we are dirtier than most.  Maybe, maybe it has more to do with the autoimmune diseases my husband has and the exposure to endocrine inhibitors that my husband and I were exposed to in our first apartment.  I think we should worry more about toxin exposure than cleanliness.  I developed endometriosis after that and hubby developed psoriasis and psoriatic arthritis.  I worried if I had a child those were the diseases we'd pass on.  We had genetic testing because my husband's family had two children diagnosed with Tay-Sachs and we were worried about that.  It turns out that hubby is a carrier but I'm not which means the kids could be carriers or not. If they are carriers they need to know because if they marry someone that is a carrier as well they could have a child with Tay-Sachs.  Tay-Sachs is an incurable, terminal disease.  Anyway, I don't think cleanliness is the answer to how my son developed Type 1 diabetes.  I wish I knew.

We've had some lows and some highs these last couple of days.  I guess that comes with insulin changes too.  We ordered Chinese the other night, unfortunately they said it'd be here a lot sooner than it showed up.  I had to feed him something else and then the poor boy couldn't have the Chinese because he'd already had his insulin for the carbs he ate.  It was not a good night.  We saved him some of the food for the next day for lunch.  It wasn't the same.  And then when he did have it he ran high all day.  The joys of type 1 diabetes (sarcasm).

Work scheduled me for Thursday even though I requested it off a month ago.  My supermarket supervisor said he doesn't have a cake decorator that can work thursdays.  I told him a month ago!  I have to take FMLA off for the day.  Plus taking the FMLA daily because I they won't let me work 9-5:30 instead of my scheduled 10-6:30, well, let's just say this is stressful.

Today was tough.  Hubby was out.  Sugar Bear was hungry but it was after lunch and in the snack time, so I tested.  He was a bit high but since he'd had insulin only 2 hours earlier I decided we didn't need to correct because I assumed he was still coming down.  I let him have his free 15g snack.  An hour later and we have a meltdown.  I couldn't tell if he was super low or high.  He was bawling uncontrollably and rigid.  I managed to pry a finger to test.  He was high.  I got the pen out and had to wrangle a rigid arm and give a shot.  I held him for 15 minutes while he calmed down and then we tested again.  He was coming down and feeling better.  My stomach was in knots.  We talked about how it's hard to control our emotions when BS is not in range and how much better we feel when it is. He said he was sorry and I could tell it really bothered him.  He said it was all his fault but I was the one that let him have a snack a bit early.  I was the one that didn't correct right away for his higher reading. I felt so bad for how he felt.    Some days feel almost normal and then there are days like today where I just want to cry.  I know we got this.  We have to.  We have no choice. I want my Sugar Bear to live a long and happy life.  We got this.  

Breakin Down

Health issues are always a challenge no matter how insignificant they may seem.  Our oldest went to the doc two days ago for pink eye.  He had to miss school for two days while we did drops in his eyes every two hours (which we still have to do for another three days).  Hubby's body feels miserable with this weather; he has psoriatic arthritis.  You mix those two things in with some cabin fever and Sugar Bear's irritability from running high on BS (we think he's out of the honeymoon stage) and you have some pretty cranky people.  How do partners not drift apart when there never seems to be enough time for anything.  There is a song called Breakin Down by Mike and Amy Finders.  It keeps going through my head.  One of the lines is "Breakin down in layers, breakin down in parts, breakin down, breaking all the way down, I try to keep it from my heart".  I hope I do.

Spare a Rose Save a Child

Sugar Bear has supplies.  Even with insurance headaches he has life 

saving supplies. He lives in a country where he has access to 

everything he needs to live with type 1 diabetes.  Other children

in other countries are not as lucky.  They die.  Many die the first 

year they are diagnosed.  Please, please, please donate.  If you spare 

one rose this year for Valentine's Day and donate you save a child for

a month!  A month is a lifetime!  These children need your help. 

http://SpareARose.org

www.SpareARose.org/give 

The Pen

Hubby made it back from his trip even though the weather had closed our airport.  He flew into a nearby city and a sweet friend drove him here.  I am so thankful for such good friends.

The weekend had ups and downs being without my partner.  He's my support.  He smooths my rough edges.  He calms me in the chaos.  And it was my first solo since Sugar Bear's diagnosis.  I've always been a bit of an "helicopter" mom and this has put some of those feelings into overdrive.  I worry.  A lot.  I sometimes panic.  I still cry occasionally.  Today I high fived the kiddo.

When we left the hospital we were sent home with syringes and a novo nordisk Jr. Pen.  The pen is an insulin injector that uses a cartridge for the insulin.  It has an easy dial for the units.  We thought it'd be easier but Sugar Bear refused to even give it a try.  We showed him how the needle was a bit shorter than the syringes.  How it worked.  How it might be easier for everyone.  etc.. etc..etc.. no go.  So last night we bribed him.  He wanted money for an online game ($5) and we said he could have it if he'd at least try the pen in the morning.  He took the deal.  Morning came and he was nervous.  I was nervous.  It was amazing.  He smiled.  He said it hurt way less! We high fived.   I'm thrilled.  This evening he was disappointed that we have no way of giving his Lantus insulin the same way.  He said that one definitely hurt more.  He likes the pen!  I think this will be a big help!  For all of us.  It's awesome.  It takes less time!  It doesn't hurt as much!  That's a biggie for both of us!

Just the Beginning

We dropped hubby at the airport yesterday, went grocery shopping, had dinner, played games, and things seemed to be going well until I said it was bedtime.  I gave the bedtime snack, the lantus and BS was in range.  But we had a meltdown.  Both of us.  I was tired and not as patient as I should have been.  We both ended up in tears.  I was crying because Sugar Bear was blaming himself for my exhaustion and saying things like it would have been better had he never been born.  It makes me tear up now saying it.  I held him.  I told him over and over that we love him and would do anything we could for him.  He said he hates his diabetes.  We talked about how it was uninvited and nothing could have prevented it.  How we're not going to let it beat us down but that sometimes it'll be hard.  That we can get through it.  I hate it too.  I told him if I could take it away I would.  I would gladly have it so he didn't.  It's so hard watching my baby grapple with an issue that grown ups would have trouble tackling.  It breaks my heart that I can't just kiss it and make it all better.  I know it'll get "easier" and more "routine" and eventually he'll be the one trying to keep it all in control, but he's only 9.

Before I had kids I was diagnosed with endometriosis.  I had surgeries for it.  I went to support groups in another city.  I started my own support group here.  And it wasn't a life threatening disease. It caused pain, yes.  There were diet changes I made voluntarily.  It was my choice to make me feel better but it wouldn't have killed me if I hadn't.  I was an adult.  I struggled with it.  I hated it.  I cried over it.  I "fixed" it.  I had kids; I had a surgery that for all intents and purposes, put me in remission for over a decade.  But it wasn't Type 1 Diabetes and I wasn't a child looking at a lifetime of shots and blood sugar checks and carb counting before I eat.  343 times we've tested his BS and given 168 shots since we came home on New Year's Day in the evening.  And that is just the beginning.

Tonight we'll go to a friends for dinner.  Sketti.  Sugar Bear likes it plain with Parmesan.  One cup cooked is 44g.  He'll probably have two cups.  He'll play.  We'll test.  We'll give a shot.  We'll live.

The Kit

This is our kit.  It has test strips, a meter, alcohol swabs, lancet (restocked immediately after pic), the poker, ketone test sticks, novolog fast acting insulin, lantus long lasting insulin, syringes, an empty test strip container for sharps, gauze wipes, carb counting book, glucose gel, glucose tablets, 2 snack baggies of skittles, a pen flashlight, and glucagon.  All in a camo small bag that Sugar Bear can carry himself.  It's always within a foot of him.  It sits on the the bedside table at night.  It is a life preserver.  It keeps us afloat.  It allows us to swim in deep water comfortably.  It lets us, but especially Sugar Bear, live. 

So hubby is out of town for the weekend and it's just me and the kids!  This should be fun.  Grab the kit and let''so go!

Save a Child

Only a week and it'll be Valentine's Day.   Purchases of chocolate and roses will soar.  I'll sell numerous cakes and cupcakes at work, but my heart is with the Spare a Rose, save a Child campaign.  Sugar Bear is so lucky to be born in a country where his medical needs can be met.  Other children in other countries that are diagnosed with Type 1 do not have the same kind of blessings.  They don't have the supplies, resources, education.  The International Diabetes Federation is an amazing group doing amazing work saving children's lives.  Please, if you can, spare a rose this Valentine's Day and save a child.  http://www.p4dc.com/spare-a-rose/
http://www.idf.org/lifeforachild/donate

Apologies

"I'm so sorry." I said to Sugar Bear last night right after giving him his INsillion.  You see, we prep the injection site with an alcohol swab and usually wait for Sugar Bear to tell us it's dry before we give the shot.  We did all those last night but it wasn't dry.  Tears immediately welled up in his eyes and I felt like the worst Mother ever until I did it again when we went to test his BS a few minutes later.  Then I didn't just feel like the worst, I was the worst.

And then to top it off, tonight with his dinner shot I got blood.  Uggg.  I feel like the ground is constantly shifting under me.  It doesn't help that Sugar Bear had a BS of 299 at 3am.  Where did that number come from?  He didn't feel too good this morning so hubby checked ketones.  He had some trace/small ones when I checked and then none a few hours later.  By the time I got home he said he was feeling better.  Phew.  That's a bit of a relief.

Have used three hours of FMLA at work, an hour a day, in order to be home to feed and take care of Sugar Bear and my disabled diabetic husband and my thirteen year old.  When that runs out I'll be relegated to part time status.  This is also stressing me out.  Finances are tight.  Free time is fairly non-existent, but I am looking forward to this weekend.  Hubby will be out of town from Friday evening to Sunday evening and since we don't have someone that could take care of Sugar Bear while I'm at work I have three days off in a row.  I need it.  I've worked the last seven days straight and have to work tomorrow.  Three days with my boys sounds wonderful.  Just wish it could be all of us.  My older boy has offered to do breakfast and checks and shots to let me sleep in.  I'm not sure I'm comfortable with that.  I don't think I'd be able to sleep anyway when they are up.  It's never felt right.    I think instead we'll play games, have popcorn, watch movies, have dinner with friends, and just live!

Honeymoon

Hubby forgot the kit the other day.  Sugar Bear was okay but everyone got a bit of an earful on why it's so important.  I think it became evident to them today when hubby was getting his tags (it's his bday and he's 42!) with just Sugar Bear in tow.  Sugar Bear started feeling shaky while in line.  Time to test.  Yup, low.  Oh noes, what about a snack? Oh yeah, Mom had one packed in the kit along with glucose tabs and glucose gel and the glucagon.  Yup, I was a Girl Scout.  One of the elderly gentleman in line patted Sugar Bear on the head and said "Hopefully you'll outgrow it."  Hubby gave him a curt comment on how that isn't the case.  Then it was off to pick up the big boy from school and time to recheck BS in the school's parking lot to make sure the snack did it's job.  Big bro got to be the one to poke the finger and as Sugar Bear held it out Big Bro said "Hey, you're a holey man" at which point I guess there were giggles and joy.

It's been a pretty good day.  After almost a week of running low consistently (especially at night) we've made some doctor recommended dose adjustments and everyone's come to the conclusion he's entering the honeymoon phase/period.  This is when the last 5-20% of his beta cells (the rest are gone) start producing some insulin as a last hurrah before his autoantibodies destroy them.  They've had a rest and try to make up for what's missing.  It makes insulin doses tricky.  No one knows how long it'll last.  It could be a week, a month, 3 months, 6 months, or a year.  On average it's usually somewhere around 3-6 months.  I'm not sure what I'd prefer but I know Sugar Bear says he feels almost "normal again".

Superheroes

The first week after we came home from the hospital was pretty challenging.  So many adjustments and emotional upheaval.  But during that week one thing that stands out to me was an ongoing conversation Sugar Bear started about what if (fill in superhero name) had type 1 diabetes.  It made us laugh.  It gave opportunity for me to answer questions about his disease.  Sugar Bear loves Hulk, and Wolverine and Iron Man so those were the ones we concentrated on.  He's not a DC kid.  Last night I found these two blog posts and we had fun reading them with Sugar Bear snuggling and laughing and discussing afterwards.  Unfortunately we couldn't find any on Hulk.  So here are those sites.  Enjoy.  http://www.diabetesdaily.com/voices/2012/11/if-wolverine-had-diabetes/
And
http://www.diabetesdaily.com/voices/2012/05/if-the-iron-man-had-diabetes/


Sugar Bear is my Superhero!