1 in 885

It has been 885 days since Nate was diagnosed with type 1 diabetes.  That's almost 2.5 years.  In that time I have only spent ONE night away from him.

Yep - - - I finally did it.

Or I should really say ---- We finally did it.

My Mom and Dad (GaGa and Poppa) kept Nate overnight for the 1st time since his diagnosis on Friday night. I really wasn't that nervous.  My mom has been hesitant but I knew she could do it.  She's been helping me with him long enough that I knew she would rock it.

Nate hasn't been wearing his DexCom but he agreed to wear it this weekend so that he could spend the night with GaGa and Poppa (a privilege only his sisters had experienced until this weekend). We did a pod change before we headed over so that was out of the way.  Then we were good to go!  I've never seen Nate so excited!!

Ok - - - I was pretty excited too.  I somehow in 2.5 years had forgotten that it is normal to be away from your children.  It is normal to spend a night away.  It is normal to really, really want a break.  It is normal to really, really need a break.

I'm not going to lie --- it was pretty damn nice!  I've been doing this on my own for a long time now. I needed the break.  Hell, I'm already looking forward to the next break.  Hello - Mom are you listening??  :)

Speaking of my mom --- She totally rocked it.  I stuck around for a while but could tell I wasn't really needed as they were sitting down for dinner.  I normally bolus and temp basal by quite a bit after a pod change but I was too nervous to do that and leave him so he ended up going HIGH after dinner.  My mom  rocked the correction before bedtime and by 10:30 he was back in range and sleeping like a little angel.  <--- Really the only time he's an angel.

The next morning as I was rolling over and then falling back asleep after pushing the snooze button my mom was pre-bolusing for pancakes and again totally rocking the SWAG for SIX pancakes with whipped cream!

When I picked the littles up around 10:30 on Saturday morning he was in range and ready for his morning snack.  Nicely done, GaGa!  Nicely done!






** Disclaimer **

I did have a few nights away from Nate and the girls in January of 2010 but it doesn't really count because I was having my uterus removed and Nate stayed with his father. That is all.  :)

Broken

I've been writing this post in my head for weeks.  It's no easy task.
Tonight I've been staring at the white Blogger screen for quite sometime.

My marriage has been broken for quite sometime.

Was it broken before diabetes?  Probably so.

Did diabetes do more damage?  Who knows?

 I certainly am not going to blame diabetes because that feels a little bit like blaming Nate or his broken pancreas.  Sophie's diagnosis wasn't easy for us either.  We made choices.  We handled everything separately.  I grieved alone most of the time.  And let's not kid ourselves --- there is grief.  Well, there certainly was for me.

Is this where we finally disconnected?  Hard to say for sure.  I'm just going to say our marriage has been broken for a while, we've been living separately for years and finally on January 25, 2012 we officially filed for divorce.

Without turning my blog into the Real Housewives of Collin County . . . I'll just say this is not an amicable divorce and it isn't pretty and it could drag out for a while. I will not blog about the details of our divorce, or the craziness that has transpired or even the accusations that are being thrown around (and trust me the drama so far would be getting top ratings!).  I believe that in the best interest of our children I will refrain from 'blogging it out' here.

I will however be blogging about starting over, being a single mom to 3 littles, being a single mom of 2 children that have special medical needs, and finding my way in the world on my own 2 feet all while being scared to death as to what lies ahead.  I will look to the wonderful men and women who have done this before me to help guide me and encourage me each step of the way.

The end of a marriage is never an easy time.  It's stressful, sad and scary.  For me specifically, it is all of those things and more.

I've been a stay at home mom for 8 years.  EIGHT YEARS.  What in the heck am I going to do now?

I know I am not the only stay at home mom that has had to re-enter the work force after years of staying home wiping butts, washing dishes and shaping little lives.   The difference is my mind is really mushy.  The whole not sleeping for more that 2 or 3 hours at a time has taken its toll on me and I really do not know how one goes to work and functions properly on that kind of sleep.  I know it can be done.  There are moms and dads doing it now but I'm not going to lie --- I'm  pretty scared.  

I've been with Nate everyday since his diagnoses 2 1/2 years ago.  He goes to school for only 3 hours a day, 3 days a week.  During those 3 hours he's at school his nurse texts me at least 3 times. I am terrified to leave Nate.  He's only 3.  I'm not ready to hand over his care to anyone else.  I know I'm not telling most of my readers anything here but it is MY job to keep him alive --- 24 hours a day, 7 days a week.  I'm scared.  I cannot fathom leaving him for 8-10 hours a day.  The very thought of it causes a wave of nausea, tears well up in my eyes and I actually have to remind myself to breathe.  His bg was 38 today and he was running around like a crazy man.  He has a look.  I saw it and checked.  NO ONE else knows that look.  NO ONE else would have checked.  How do you teach someone everything that I do?  It seems impossible.

Sophie's health has me worried too.  It's been almost 2 years since her diagnosis and she's never been in remission.  She's on steroids, immune suppression drugs and we are looking into an infusion drug that could have some pretty strong side-effects.  She's already missed over a week of school this year because of her UC.  I can't imagine not being there for her when she needs me.  No one can love her through these things like her mama can.

Emma, Emma my sweet Emma.  She is my rock.  She is so stoic and beautiful.  She seems to handle everything in stride but I know that she is just like her mommy.  She's so sensitive and internalizes everything.   I know this divorce is hard on her, I know she feels like she always comes last.  I know she is always silently waiting on what her diagnosis will be.  That was hard to write. It's hard to think about.  She's such a sweet girl.  I love being her mommy. I love dropping her off at school every morning and seeing her face light up every afternoon when she sees me pull up to the carpool line.  I'm not ready for so many changes!

For the time being I'm still living in our house with the kids.  Being a single mom isn't really the scary part ---- I've been doing all of this alone here for years now.  The difference is that although I felt alone most of the time I was still able to stay home with the kids, shuttle them to and from doctors appointments, drop them off at school, rage bolus Nate to combat crazy highs, SWAG the macaroni and cheese for lunch and head off lows by just knowing that look he gets.  I've been able to --- yep, I'm going to admit it here . . . catch a nap every once in a while when he's at school.  There are nights that I'm up every hour or two and there are days where I just absolutely hit a brick wall and cannot do one more thing.

There are a lot of scary things in my future . . . where will we live, what will we drive, who will care for Nate, what if Sophie gets worse, who will hire an ass-dragging D Mom, how can I possibly function on 2 hours of sleep, how will I buy groceries, will Sophie's medications be covered . . . the list goes on and on and on and on.  I'm taking them all one at a time.  I'll keep you posted along the way.  I'm always very transparent here and looking forward to starting over and sharing my journey.

I know a lot of people have emailed and reached out over the past month or so and I would like to apologize for not responding as I normally do.  I am still a fierce advocate for Type 1, OmniPod, JDRF, Crohn's and Colitis and the CCFA.  I've just had to take a little time and focus on me and my children.

Pod Problems . . .

Just before Christmas we started having terribly stubborn highs . . . correction after correction and Nate was still high.  Not super high but he would linger too long in the mid to high 200's with no movement and often develop ketones.

I never give up on a pod - EVER.  I've never had a pod just not work!  There has to be a reason it's not working . . . bent cannula, occlusion, bad insulin or even a little boy that randomly removes pods without my knowledge.  I could not get to the bottom of this!!

These highs were baffling at 1st but then I remembered the Apidra issues that others had blogged about. So I started watching for the highs and low and behold right around the 48 hour mark Nate started going high for no reason.

What the what?

No . . . Please no!!  This cannot be happening.  Pod changes are so bad already!  I cannot imagine having to now do them every 2 days.

I knew at 11a on Christmas day that it was the 48 hour mark and I should change the pod but the little man was having so much fun --- I just couldn't do a pod change on Christmas day.

 I should have done the damn pod change!!

 Later that day I had a mini meltdown as his PDM read HIGH (over 500) after a day full of carbolicious treats and after numerous corrections his Dexcom said HIGH with a double arrow up.

I have to say just as I was falling into my diabetes groove something like this pops up and just totally ruins my good groove.  So annoying!  I was totally hating diabetes on Christmas day.  I cried a little.

I started thoroughly inspecting the pods.

Most of them looked like the above picture.  They were occluding but not enough to set off alarm. We did actually have one occlusion alarm but just one.  Insulin was still getting through --- it was almost as if Nate's body was having a reaction to the cannula or the insulin.  Normally the cannulas do not look like that when I take off a pod.  I have no idea.  I think he wasn't going super high because I kept correcting so some insulin was able to get through but not all.  I really had no idea so I called my fabulous OmniPod peeps and they arranged for us to get some Novolog to see if that helped until we could get through the holidays.

I really struggled with changing from Apidra back to Novolog.  We've been pumping with Apidra for 18-months and I LOVE IT.  I was not looking forward to going back to Novolog but I was also struggling with changing Nate's pod ever 2 days.  What to do - what to do?!?!

And without doing a thing --- just like that . . .

As quickly as it started ---- it ended.  No new insulin, no new pods, no change to anything.  Diabetes just started playing (somewhat) nice again.

Seriously wanted to pull my hair out and then wham all is back to (diabetes) normal.

All I can say is what the what and that's just because my grandmother still reads my blog and she gets mad at me when I say what the fuck?!?

Catching up . . .

Clearly I am way behind and have a lot of catching up to do.  Big changes happening over here at the Houston house.  For now I'll just let you know that I'm so far behind that my Christmas decorations are still up and Nate insists on turning the Christmas tree lights on still (embarrassing!).  They were supposed to come down this last weekend but . . . well that's another story for another day.

We had a nice Christmas --- it was crazy and hectic but it was great.  It's always nice to see Christmas through the eyes of the littles.

Since I'm so far behind  . . . here are our Santa pics --- Nate really enjoyed meeting the big guy!

My 3 Littles . . .

Hopefully, I will get around to taking the Christmas decorations down this week and find some time to blog a bit this month!

I miss my friends that live inside of my computer!

Failing Nate

Today was Nate's 3 month endocrinologist visit otherwise known as my diabetes report card.
I am perfectly aware that I should not feel as if it is my report card but please be honest here, folks.  Who of us does not feel this way?  Raise you hand?  Yep, that's what I thought.

Nate's a1c this summer was 6.6, in the fall it crept up to 7.2 and today it was up to 8.3.  It hasn't been that high in well over a year. To say that I was devastated would be an understatement. I left the office in tears barely able to hold myself together to drive Nate and myself home before having a full on breakdown in the privacy of my room.

Yes, I fell apart.

And Yes, I read this article today by Dr. Ponder . . . Diabetes is more than about test results, numbers

It didn't help.

It doesn't matter the reason ---

Yes, Nate is going through a growth spurt, and he has been sick for 3 weeks and we run him higher at school, and he's a pod remover and a food sneaker.  Our nurse practitioner listed off all of the reasons. He told me we really didn't need to make any changes --- he's just a growing boy and this is what happens to growing boys.  I'm sure he hated seeing the tears roll down my face but I couldn't help it! None of those things matter to me.  I feel that I am failing him.  I've had a few days of diabetes burn out and now those days are seared in my brain as the worst mommy days ever.

Failing Nate is not an option.  This is serious business.  He will have this stupid disease his entire life minus14-months.

Complications

By Mayo Clinic staff

Type 1 diabetes can affect nearly every major organ in your child's body, including the heart, blood vessels, nerves, eyes and kidneys. The good news is that keeping your child's blood sugar level close to normal most of the time can dramatically reduce the risk of these complications.

Long-term complications of type 1 diabetes develop gradually. Eventually, if blood sugar levels aren't well controlled, diabetes complications may be disabling or even life-threatening.

• Heart and blood vessel disease. Diabetes dramatically increases your child's risk of various cardiovascular problems, including coronary artery disease with chest pain (angina), heart attack, stroke, narrowing of the arteries (atherosclerosis) and high blood pressure, later in life.
• Nerve damage (neuropathy). Excess sugar can injure the walls of the tiny blood vessels (capillaries) that nourish your child's nerves, especially in the legs. This can cause tingling, numbness, burning or pain. Nerve damage usually happens gradually, over a long period of time.
• Kidney damage (nephropathy). Diabetes can damage the numerous tiny blood vessel clusters that filter waste from your child's blood. Severe damage can lead to kidney failure or irreversible end-stage kidney disease, requiring dialysis or a kidney transplant.
• Eye damage. Diabetes can damage the blood vessels of the retina (diabetic retinopathy). Diabetic retinopathy can cause blindness. Diabetes can also lead to cataracts and a greater risk of glaucoma.
• Foot damage. Nerve damage in the feet or poor blood flow to the feet increases the risk of various foot complications. Left untreated, cuts and blisters can become serious infections.
• Skin conditions. Diabetes may leave your child more susceptible to skin problems, including bacterial infections, fungal infections and itching.
• Osteoporosis. Diabetes may lead to lower than normal bone mineral density, increasing your child's risk of osteoporosis as an adult.
• Brain problems. Although the exact reason for the link isn't clear, people with diabetes have an increased risk of dementia and Alzheimer's disease.

All of that is on me right now.

Failing Nate is not an option ---- his life depends on me.

That is such a huge weight to carry ---- I can't screw this up.  There are no re-dos here, Laura!

Every 3 days

Diabetes is always here.

Every day.

I wake up to diabetes before I wake up to my children.  The 1st thing I do with my sleepy eyes and groggy head is check Nate's blood sugar then bolus for breakfast.  Obviously I eat, breathe and sleep diabetes but it's all routine.

It's become part of our lives.

Eat. Sleep. Bolus.

Routine.

It's just become pretty routine.

Not always an easy routine but after 2 years it's become routine nonetheless.

But every 3rd day . . .

I dread the 3rd day.

Pod change day.

We have to change Nate's pod every 3 days.  It's not hard.
You take it out, fill it up, prime it, stick it on and POP it.  Sounds easy enough right?

I dread pod change day.

It has nothing to do with the OmniPod.  I think I would hate site change day even more if we didn't have the OP but I really just dread the 3rd day.

I usually change Nate's pod at night when he is sleeping (see videos below for why).  Maybe because it is the end of the day, I'm tired and it's just one more thing I have to do. Or maybe it's because I can't stand the smell of insulin, or looking at the big giant syringe that fills the pod.  It could be because I know how much Nate hates this day.  He screams, he cries, he begs and pleads.  I take it in stride but I think maybe that could be what makes me dread it so much.  Even when he is sleeping and he barely stirs --- I know.  I know how much he hates it.

Every 3rd day I also give thanks for the wonderfulness of the OmniPod.  This wonderful little medical device makes the days in between pod change days so much more bearable.

Bittersweet loving something so much that keeps my son alive yet causes him such anguish.

Warning:  This video is hard to watch.  We had to do 2 pod changes in 1 day (Nate and Pancake were playing a little too rough and we lost a pod).  Nate was tired and absolutely did not want to have his pod put on him.  I've worn the pod on numerous occasions and although there is a loud pod when the needle inserts the cannula for me the pain in more like a small (very bearable) pinch. Granted --- I am a 38 year old woman and he is a 3 year old little boy.




Afterwards I asked him a few questions:




Keep calm and OmniPod on . . .

#30 Ramblings of a Crazy D Mamma #NHBPM

This is the last day of Diabetes Awareness month.  I'm a little sad. Did I do enough? Did I do anything at all? Although I'm sure all of my Facebook friends are breathing a huge sigh of relief --- thank God Laura won't talk about diabetes anymore --- it doesn't stop here for me.  Diabetes awareness goes on and on and on and on for me and for my family.  I've really enjoyed writing a post each day for the National Health Blog Post Month #NHBPM.

I still have several posts brewing around in my head so maybe I'll keep up the momentum.  Maybe not.  We'll see.

I was thinking back to my 'life plan' --- yea I think I had one when I was a lot younger.  I was supposed to be married by 25, have babies by 27, white picket fence, happily ever after and blah blah blah . . .

I'm so glad things didn't go as planned.  I am not living the dream but I know I am blessed.

I am 38 years old (oh so close to 39) and am right where I am supposed to be.  I know it -- I know that my children were given to me for a very specific reason.  I am not bragging or conceited but there are people out there that absolutely could not do what I do.  That's right I said it.  I may have even been one of those people 10-15 years ago.  My life is not easy.  It is blessed and happy and loving and wonderful but it is not easy.

When people tell me that they could never do what I do I often respond with ---  yes, yes you could and you would.  But you know what ---- sometimes I'm like --- I know, you would totally suck at this.

My life is pretty much consumed by my children.  I've lost who I once was but I am ok with that --- I know I will find me again.  Right now I am doing what needs to be done to keep all of my children happy, healthy and safe.

There are days that I don't shower, brush my hair or leave my house.  Some days are so damn hard I yell at the top of my lungs ---- Why me???  When I do that I usually remind myself of the people that I think actually could not do what I do and thank the stars that my children were given to me and not them.

I am one amazing 'D-Mom' but I am total failure as a wife. Two Chronic illnesses has not been kind to my marriage.  I read a comment once that there had to have been cracks already in a marriage if something like this could break it up.  I'm calling BS on that.  Diabetes is a life changer.  It's not what we signed up for when we said I do and it has changed all of the rules.

I've lost my faith along the way.  I don't blame diabetes or UC for this at all.  It just is what it is.  I believe in something but I'm not sure what exactly.

I hate it when people tell me 'God doesn't give you more than you can handle'.  Hate it.  A good friend of mine told me this instead --->  Laura, God did not give this to you. She went on to say that God would see me through it but he did not give it to me.  I'm totally down with that!  God did not GIVE diabetes to Nate.  God did not give UC to Sweet Sophie.  He didn't.  I'm sorry but if there is a God I do not believe he would give this to anyone.

Sometimes I get diabetes burn out.  Bad.  This weekend one day I only checked Nate's bg 3 times.  What the hell?  I relied way too much on Dexcom.  I was just over it.  I feel a little guilty sometimes about the burnout. I don't even have diabetes --- am I even allowed to get burn out?  Nate has to live with it for the rest of his freaking life.  <--- sometimes that really bums me out.

I remember when Emma was a newborn and I was so overwhelmed with being a mommy.  No one tells you how hard that shit it.  OMG - maybe they did and I didn't listen but damn I was so tired and totally overwhelmed.  Yea - that's what diabetes feels like.  All of the time.

Sometimes people are talking to me and I have no idea what the crap they are talking about.  Blah Blah Blah Blah . . . . normally this is what is going on in my head . . .

So, if I'm staring off into space with a confused look on my face.  Please see photos above --- I'm trying to do that in my head or I could just be ignoring you.  Hard to say for sure.

I get embarrassed when people tell me that I am an inspiration or I've helped them through my blog.  Because I know sometimes I just sound like a CrAzY ass cracker bitchin' and moanin' about all of my problems.  That being said I'm glad my brutal honesty has helped in a small way.

Things I hate:

I hate the stigma associated with diabetes.  Come on, people.  Nate was 14-months when he was diagnosed.  You seriously think it was lack of exercise?  You're a damn fool.

I hate it when people offer up sugar free options.  What the crap?  It still has carbs.

I hate the way I expect everyone to just understand.

I hate that time right before dinner when everything is coming together. The main dish and the sides are all perfectly timed to be done at the same time, I'm trying to get the table set, measure and weigh Nate's food, check his blood sugar and bolus him while I am still counting the carbs in my head.  That totally stresses me out.  Oh and I hate that it happens every single night.  Well, except when my timing is off and the meatloaf isn't done on time.

I hate it when random people tell me about their great aunt that had to have their foot removed because she had the 'bad kind' of diabetes.

I hate the way diabetes has made me fat. I stress eat and am too tired to work out.  That's the truth.  So tired!! Need more sleep!


Things I love:

I love Nate's insulin pump, The OmniPod

I will love it more when it is smaller.

I WOULD love it if we had someone like Steve Jobs working in the diabetes world.  I want to bolus from my iPhone.

I love the Diabetes Online Community.  Still wishing for the commune and the sister wife.  I already have at least one picked out.  Hi Nicole!!  :)

I love that Nate was able to get on Medicaid when private insurance would not cover him.

I love that I still have a killer sense of humor.  I'm funny.

I love that I am able to blog about all of this and I love that people actually read it.  I love comments -- remember?

I think that's all I've got.

Diabetes doesn't define me but it certainly has made me a completely different person than I was before it came into my life.  I don't always like what it's doing to me and to Nate and to my family but it's here to stay so I might as well put on my big girl panties and deal with it.  Right?


Thank you for reading my last post for. . .
NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J