A feeling of...

After diagnosis, a friend told me I would morn losing my healthy son.  I didn't really get it but I appreciated that she felt it was serious.  I resolved to be strong, and to live life the same as if Johnny didn't have diabetes.  I was going to stay positive.  We of all people could do this.

The past few weeks I am failing at this resolution.

How do I explain what I am feeling?

When first diagnosed, diabetes was an obstacle to tackle.  I am pretty good at that.  I set out to learn everything I could about this disease and how it is managed with toddlers since that is very different than older children.  We struggled in the beginning, but it was understandable and acceptable even... it was the beginning.  As I struggled to keep him from post meal spikes, and post high lows, and those sorts of things, I always had something to hope would help us.  When we were on MDI (multiple daily injections) and didn't have Dex, I would tell myself how much better and easier things would be for Johnny and our family if we could get a CGM-continuous glucose monitor, our Dexcom.  I held on to hope that once we had that, it would be less stressful, less worry, I could see what was happening instead of wonder.  We got Dex, and it did help... but it didn't make living our life the way it was before diagnosis.  There were still lows we couldn't catch because Dex can't keep up, there were still post meal highs which led to major behavior problems... there was still Diabetes to live with.  So then I started putting all my hope for life to improve in getting Johnny on a pump.  Yes, the pump will help us keep him from spiking high or dropping low.  The pump will allow others to be comfortable caring for his needs.  It does... but it doesn't... its just another tool I can use to help manage Diabetes.  He still needs constant monitoring.  Pumping requires more finger pokes not less.  Nights feel more dangerous with a pump.  Ugh....

Our last Endo appointment was a good visit.  Johnny's doctor was thrilled with his numbers.  His A1c was right where she wants it to be.  He seems well adjusted.  She told me that we were "ideal."  I was really shocked by this.  At first I felt a sense of pride.  We are doing it!  But after I thought about this for a few weeks I have a new feeling. 

A feeling of despair.  A loss of hope that our old life is waiting for us.  It isn't. 

But knowing that, really acknowledging this fact and embracing it is freeing.  I don't need to "try" to get back to that.  I can morn losing that old life, but I am excited about our future again. 

Thanks for letting me share.

Bad Romance

In my early twenties I had a "bad romance."  My relationship with D is similar in a way...

While we were dating I would only make time to see friends when I was mad and upset with my boyfriend.  Therefor the only things my friends ever heard about this guy was what a jerk he was!  When I was head over heels and happy, I was to wrapped up in him to make time for friends.  So they never got to hear the good stuff.  We've all been there done that right?

I think the blog is becoming more and more my "friend for when I am mad at D."  The way I write it reads like every moment of every day I am sad and depressed and hating our new normal.

Well... don't get me wrong... I am sad and probably a bit depressed and definitely hating the new normal.  But our lives have LOTS of good in it too.  But when I am busy with the happy good stuff I am not blogging.  So you wouldn't know it.

So I know I have scared a lot of you off lately.  Please come back.  I promise to include more good blog posts too.  I am still going to post the bad, the raw emotional scary bad... but I will make time for the wonderful stuff too.

Stay tuned...

It's still here.

I will admit it.  Some days are fine.  D isn't a big deal, we just check, give insulin and move on.  Some days are a big deal.

I am surprised that after....
every single day for 6 months....
every meal calculated....
every vial of insulin opened...
every book read...
every email to the doctor...
every phone call with the nurse...
every prick of his finger...
every time I have treated a low...
every time my heart races when he acts odd...
every shot I gave him...
every pump site changed...
every scar we create...
every glance at Dexcom...
every huge bill at the pharmacy...
every doctors appointment...
every time I have to explain why my son needs insulin and not low carb diets...

I still catch myself thinking, "This can't really be happening to us." 

But it is.  It's still here.



(There has been so much sad and awful news amoung my friends and their children in the past few weeks that I want to say, just because I feel D has changed our lives completely doesn't mean I think it compairs to what you are going through.  Like I have said before, I have my sugar baby and life is good because of that.)

New Sticky

Every other day Johnny needs his site changed.  We call them "stickies" because, well... they stick to him.  A more accurate word for them would be "inserties" since they are actually inserted into his skin, but I think "sticky" goes over better for everyone.  These stickies are how his insulin is delivered to his body by the pump instead of the shots we used to give. 

Today was a New Sticky Day, so I took pictures to share with everyone.  Please forgive the quality as they were with my phone, then most of them were zoomed in.

 First we head over the the Diabetes cabinet.  Yes my corner cabinet in my kitchen  is 3 shelves, wall to wall Diabetes goodies.  We are shipped supplies to last for 3 months and with most of them being changed every other day, plus extras for "oppsies" that brings it to 50 sets of site changes.  Additionally we have 12 Dexcom sensors, alcohol wipes, barrier wipes, adhesive wipes, adhesive remover wipes and liquid, numbing creams, spare meters, 450 test strips (1 month supply), lancets, urine ketone strips, blood ketone strips, neosporin, and band aids.  (Our refrigerator has about 10 vials on insulin in it at any one time also.)

First thing is first, we need to numb the new site.  I use Press'n Seal squares with about a nickle size amount of numbing cream.I find a spot with enough fat that also is free of recent poke marks and scars to apply the Press'n Seal. Then we wait about an hour.

Once the hour passes, and Jocelyn is settled somewhere for a while we begin.  I gather the items needed.
From top left to right: adhesive remover wipes to take off his current sticky, alcohol wipe to clean the insertion point on his current sticky, neosporin to help the site heal.  We found out he is allergic to latex recently and of course do not have any latex free band aids yet, but it is on the list.  Next, is his insulin cartridge, vial of insulin (Humalog), "sticky", alcohol wipe, adhesive wipe, opiflex tape, scissors, and pump.

We use the adhesive remover wipe all over his old sticky.

Once removed I clean the insertion site (and my finger tips) with an alcohol wipe. (Not Shown)

I also apply Neosporin.

I open the sterile package that contains his insulin cartridge that is loaded into the pump.

I assemble the syringe to draw up the insulin.

I draw about 40 units of insulin.  I tap to remove are bubbles.

I start 3 piles.  Waste / Sharps / To Be Used.

 I then start the program to get Johnny's Pump ready for a new cartridge of insulin.

I open the new set.  This is the tubing that runs from the pump and is inserted into his skin.  We use Contact Detach, but used to use Inset30.  We had to switch because Johnny is allergic to the Inset30 cannula (flexible tube inserted under the skin). 

I attach the tubing to the insulin cartridge.

I run the program that loads this new cartridge of insulin.

This set is 2 peices.  The reason it is 2 pieces is so that we can disconnect the pump from Johnny but still leave his sticky on.  That is great for things like taking a bath, when the pump isn't needed for a few minutes and we don't have to re-insert a new site.  It just clips in or out very smoothly.

Then I prime the set.  This just means I force insulin throughout the tubing and out the needle so that once it is attached to Johnny it is full of insulin and not air.  For reference, I prime about 15 units of insulin.  So it is about 12 units of insulin just in the tube and needle (I let some squirt out).  He only gets 12 units a day currently.  I just want to show you how such a small chemical change in our bodies could kill us.  He would die with out these 12 units.

I then cut a small rectangle of medical tape to tape the sticky down.  I've learned that 3 year old can pull just about anything out if it isn't taped down.

So we begin the actual insertion.  I remove the Press'n Seal, and wipe off the numbing cream with a damp paper towel.

I open my I.V. Prep and my alcohol wipe.  The I.V. Prep makes the area extra sticky as well as cleans it.  The alcohol wipe is actually just for my fingertips because they get so sticky from the I.V. Prep.

I wipe a good sized area, maybe a 2 inch diameter.

Yes it is that sticky, I HAVE to clean my fingertips or the rest of the supplies would stick to me.

I remove the contact paper on all the adhesive parts of his sticky.

Sorry for the blurry photo but this is a picture of the steel needle that stays in him for the next 2 days.  Pretty thin and short.

 I press the needle into his skin where I put the numbing cream.  The other sticky is where we can disconnect the tube from if we so choose.

He get the tape placed over the entire site with the needle.  One time I taped down the tubing that runs between the two stickies.  I found out 2 days later when I took it all off that he was allergic to that tubing as well.  Ugh... It doesn't seem to get irritated unless it is taped down though.

Finally the pump is placed in his SpiBelt and zipped closed.  His pump is locked by the way, so even if he took it out, the buttons won't work.  Its pretty child proof.

 

 Including the numbing cream, stopping to fill sippy, stopping cause Johnny tells me his is nervous, stopping cause Jocelyn needs to be repositioned to stay happy, the whole thing takes me about an hour and a half.  I know it could be faster but it just isn't right now.  So that is 4.5-6 hours a week I spend on this task. 

The good news is that normally he doesn't mind it much.  But when we have to change the site with out numbing cream, because it came out on its own or something, that is when we have a few to a lot of tears.  For these pictures he was way to busy watching a LeapFrog DVD to care what I was doing. 

187 days

Well, we made it. 

6 months of living with type 1 diabetes in our family.

I remember how much day 6 was different than day 1.  I remember how much better 6 weeks felt than that first week.  Today, I can say that 6 months into D is so much better than our first month was.  I hope that it continues this way.  I hope that our 1 year is leaps and bounds from today even.  I hope that 5 years will feel completely different than this first year.  I hope our first decade will be so much better than today, that we will have a hard time remembering how hard it was for us at first. 

1 year ago I never thought I would be living this life.  But I honestly feel I prepared my whole life for it.  I was born "In Charge."  My mom tells stories of how I would ask her, "Do you have your keys, your purse, your receipt?"  I was 3, and not only did I ask but my mom would respond as though she really needed me to ask.  I never fit into any one's molds and I didn't care.  When I was in 2nd grade I had "math-itus."  During math time I would get sick EVERYDAY until finally my teacher would let me sit at her desk and do my work.  It wasn't that I was bad at it, it was that I wanted to be perfect and I had to know after each step, each problem that I was doing it right.  By 4th grade I sat in the back of my class with a 5th or 6th grade math book and worked independently.  By 11th grade I decided I was done with high school and took the High School Equivalency Exam.  I started at a local jr college in the fall majoring in Aeronautical Engineering.  I hated it, so I changed it.  My whole life I set big goals, and if something got in my way I just solved the problem.  Everything in my life has been about finding solutions to problems.  It is what I do.  It is why I can run a business, and many different kinds of them.  It is my skill set. 

So after all this I was just going to stay home and raise babies?  I never have been the nurturing kind.  Why did I feel that I wasn't allowed to want that, just because I was good at working?  But now, more than ever I see that staying home to raise my children is my passion.  It will change, but for now it is not only what I am doing but it is what I WANT to do.  So much of who I am right now is wrapped up in taking care of not only my beautiful (genius) daughter, but my sweet crazy boy.  Then for added challenge we throw D in the mix.  But guess what, I prepared my whole life to be able to manage D.  I do obsess over it.  Johnny's Endo told me in a nice way that I was micro managing D.  Heck ya!  I will take that as a compliment.  It might drive me crazy but it is the ultimate in testing my problem solving skills. 

So what I want to remember 6 months into diagnosis is this:  I was always meant to be Johnny and Jocelyn's Mama.  I came into this fight with D prepared to win.  I have a proven track record at succeeding and getting what I want.  I know how to find resources, support, and answers to get the outcome I aim for.  I have never done anything with out being completely terrified, because everything I do is a challenge.  This might be my ultimate challenge, at least for this time in my life.  Just like every other time before, I will succeed.  D won't beat us.