On this day 5 years ago my baby was really sick.  Our lives changed forever.  5 years ago today Tristan was diagnosed with type 1 diabetes.

As long as I live, I will never ever ever forget that day.  I will never forget Tristan’s screams and cries as they restrain him to take some blood.  He was 16 months old!  He had no idea what was going on.  All he knew was that I wasn’t doing anything to stop it.  I wasn’t doing anything to stop it and it was killing me.

The past 5 years have been nothing short of a very bumpy roller coaster.  A lot has happened.  Tristan went from injections to the pen to the pump.  Tristan went from not being able to recognize his lows to telling us that he feels low.  Tristan went from having zero responsibilities to checking his own blood sugar, finding carbs on packaged food and handling some functions of his pump (with supervision).

I went from being clueless about diabetes to knowing more than I ever imagine I would (and most of the time, I still have no idea what the hell I’m doing! LOL ).  I went from being extremely angry to just accepting that it is what it is.  I went from accepting that Tristan will have type 1 diabetes for the rest of his life to refusing to accept it.  I will NOT lose hope (thanks Lorraine)… ever.

Tristan has had diabetes for 1827 days!

Numbers of blood glucose check: Approximately 18270

Numbers of injections: approximately 8178

Numbers of site changes: 232

We have put a whole in Tristan’s skin 26680 times in the past 5 years.  It needs to stop!

Today I refuse to celebrate diabetes.  We celebrate special events in our lives.  I won’t allow diabetes to qualify as a special event.

However, I will…..

Celebrate Tristan’s life;

Celebrate that Tristan was diagnosed at a time when we have the technology to manage his diabetes;

Celebrate Tristan’s health;

Celebrate the fact that I meet some wonderful people that I would never have meet had it not been for diabetes;

Celebrate Tristan!  For being brave and strong.  For being a trooper and facing his diabetes head on;

Celebrate the wonderful steps that we took to insure Tristan’s health;

I will celebrate because my son is still with me.  I will celebrate because diabetes didn’t take his life.  I will celebrate because I will not allow diabetes to take his life!

I will celebrate in honor of all of the diabetes advocate out there.  Because of everything that you do Tristan’s life is better!  Thank you from the bottom of my heart.

And finally I will celebrate because in 5 years…. diabetes hasn’t won!  We won and we will continue to win for the next 5, 10, 15 etc…. until there is a cure.  Then we will win the war!

Today has been a horrible day blood sugar wise.  I guess it started yesterday after site change which was right after supper.  When we checked him at 8:40pm he was at 530!  I was silently cursing myself.  The boys and I made peppermint parfait to eat after supper.  I had me all the calculation and figured out that Tristan’s parfait would be 25 carbs.

Over night, he remained in the high 300’s.  This morning at 8:19am he was at 300.  At 10:10 (a few minutes after I got up…. Sunday is my sleep in day!) I checked him and he was at 430!!!!  Unfortunately he had gone pee a few minutes before I came downstairs…… I pushed him to drink water so that I could check ketones.  Adam checked him at 11:16, he was down to 227.  He didn’t check his ketones because he figured that he was on his way down.

Well I checked him again at 11:59 and he was at 246 and he had to pee.  So I figured that I was going to check his urine……… oh ya, large ketones!  So I did a site change.  Tristan was not happy about this at all.

Comments from Tristan during site change with tears running down his face:

- I hate diabetes;

- Why did diabetes have to come and ruin everything;

- It’s not fair, we just changed it yesterday;

- I want diabetes to go away….. NOW

At 2:00 I checked him again, he was at 502.  I corrected and did a temporary basal increase.  At 3:20 checked him again 565.  Checked ketones negative.  Decided to call the endocrinologist on call.  Lucky for me, it was Dr. Z who is Tristan’s endocrinologist.

I gave him all the numbers and explained what was going on.  Told him that I couldn’t bring him blood sugar down but that the ketones were gone.  He said okay, we will give one more shot.  He had me give him 3 units via the pump and told me to call him back if he wasn’t below 330 at 5pm.  He also told me that Tristan was to eat NOTHING but that I should push water.

5pm came around…. we checked him and his blood sugar was 547!!!!!!  Ya I was cursing.  Called Dr. Z back.  Had me give him an injection of 3 units and site change again! You can imagine how happy Tristan was at that point.  We had planned on having pasta for supper.  Well with everything that’s going on, I don’t think that it’s a good idea.  So the boys are now eating grilled cheese sandwiches….. don’t know what Adam and I will have yet.  I got to check Tristan again at 7pm to see where we stand.  Hopefully things will be starting to come down.   I’m just so worried that with the amount of insulin he’s been giving today…. it’s going to catch up with him overnight.

Now, I’m going to get myself a much deserve glass of wine and wait for 7pm!

Alright so if you follow me on Twitter you know that I started P90X on Monday.  Let me tell you it’s freaking hard!  Anyways my friend Donnie, on my first day, started telling that I was going to quit and that I should go eat a cookie….. ya taunting me!  Well that did go over very well….. I’m really good at giving it back.

Well of course, I challenged him to start the program and see how he liked it.  He accepted my challenge.  He will be starting next week.  But that wasn’t enough for me.

See this is Donnie

Do you see those pecs?  Do you see any fat on that stomach?

What about his leg?  Do you see any fat?  Arm?

So the challenge was 90 days of P90X.  This big buff dude against little out of shape me!  Please.  That is not fair.

I figured that I needed a reward.  I met Donnie while I worked with his wife Jennifer in Florida.  Their daughter Mackenzie was Tristan’s first friend.  We haven’t seen them in almost 4 years.

I thought that since he had so little faith in me, then he wouldn’t have a problem agree to fly over for a visit.  Well I was proven right.  He has no faith in me whatsoever so he was very happy to agree to the visit!  I am very happy that he agreed because I will last the 90 days!  There is no doubt in my mind.

So that being said, Donnie knows that he has to publically acknowledge this agreement.  So here it is Donnie.  Now I just need you to leave a comment here that you agree to come for a visit after the 90 days is completed and I have shown some results.  Those of you who are curious, I will emailed Donnie my measurements so that he can see the results.

So to all my friends out there…. I need your support.  Words of encouragement would be appreciated.  Oh and feel free to let Donnie know that he will lose!  Don’t worry, he’s a big boy he can take it!

****** Update******

This morning (2/05/10) I got the following message from Donnie.

Donnie ***** commented on your link:

"I tried the link but couldn’t post. Just go ahead and have a slice of pizza and get it overwith. No since in putting off the inevitable…you’re just gonna quit after 30 days anyway. LOL"

There it is.  Public acknowledgement of our deal.  Now you can’t go back on it Donnie!  And of course, you see from his message what I have to deal with! LOL

Wish me luck guys.  See you soon Donnie.  Oh don’t forget, you will be flying into Burlington VT airport.

Don’t we all love hearing that sentence!  Tristan has gotten really good at recognizing his lows.  He feels them now and is able to tell us.  Most of the time, he is correct.  Sometimes he says that he feels like his sugars are dropping when he’s actually high.

A situation has been happening lately and I would really like to have some insights from adults with diabetes.  Any info that you could give me would be much appreciated.

Scenario

Tristan will come and tell us that he feels low.  We will check his blood sugar and the result will be good.  Last time that this happened, his blood sugar was 110.  When we tell him that his blood sugar is fine he has a melt down telling us that he feels low and he wants something to correct it.  However, looking at the number, I can’t justify correcting him.  He’s not low.  I don’t know what to do in this situation.

- Could he be feeling a low before it actually happens?

- Could he be feeling low because his blood sugar dropped quickly?

- How about when he’s says that he feels low but his blood sugar is actually high… are the symptoms that similar that he wouldn’t be able to tell them apart?

If you can help me understand what his going on in his body, I would really appreciate it!  I’m at a lost here…. especially since he woke me up twice last night because he said he felt low.

So this week, both of my kids had me laughing…… I mean really laughing so I wanted to share.

When: Yesterday

Where: Connor’s bedroom

Guilty party: Connor (3 years old)

Scene: I had just woke him up from his nap.  I had him on the floor to change his diaper…. he’s not potty trained yet… yes I know it’s horrible…. yes we are working on it…. yes I’ve put underwear on him and then cleaned up the mess… yes I’m using a timer…. look the kid is resisting! :)  Anyways…. so I’m about to change his diaper… I pull the straps off and WOW we got a little pee “hard on”.  He notices at the same time as I do… here is our conversation

Connor: Mommy (hand reaching for the ummmmmmmmm affected area LOL :)) there’s something wrong with it

Me: No honey there’s nothing wrong with it, you just need to go pee, come on let’s go to the bathroom

We take a trip to the bathroom, he, of course, pees.  Back in his room, on the floor as I’m putting his new diaper on

Connor: Mommy there’s still something wrong with it

Me: There is????  Well what do you think is wrong with it?

Connor: I don’t know, it’s a monster!

LMFAO!!!!!

When: Today

Where: Our car

Guilty party: Tristan (6 years old)

Scene: We had just put gas in the car.  Tristan was trying to say the word pollutant but he couldn’t pronounce it well.  So we were correcting him and trying to help him say it properly.  Alls of that was because he was trying to tell us that gas was a pollutant.  Here is the conversation.

Tristan: So gas indicates a pollutant.  And pollutant indicates pollution.  And pollution indicates gas!  OHHHHHHHHHH you see it’s a cycle

Adam and I: ummmmmmmmmmm

Tristan: So what does indicate mean anyways!

LMFAO

Silly kids!  We are all busy with work and life and kids and husbands/wife…. but you know what?  These are the best years.  Enjoy your kid’s innocence.  Once it’s gone… it’s gone!

So this morning I realized that Tristan’s D-Anniversary is coming up soon.  In March it will be 5 years that Tristan has been living with diabetes.  While I was taking a shower I was still thinking about…. cause you know I can’t sing….. and this is what I thought about.

D= Death you will NOT cause

I = Immortal you are

A = Adamant we are

B = Brave we are

E = Empowered we are

T = Tenacious we are

E = Endurance we have

S = Successful we will be

Diabetes has been around for a long time.  But since it’s been “diagnosed” it hasn’t changed.  It hasn’t mutated or become stronger or anything.  On the other hand we have found ways to fight back.  We have become better and more efficient.  Diabetes’ got nothing on us…. oh well ya except the fact that it’s incurable!  :)  So the only power that it has is the fact that we can’t cure it.  Big power I know.  But I vote that from now on we refer to it as DABETES!  Let’s remove that immortal part!

What say you ladies and gentlemen of the jury?

I’m depressed today!  I feel like crying and I wouldn’t be able to explain why.  Well I know why but the why doesn’t make sense.  Do you know what I mean?  Let me explain.

The past couple of days a lot of people mentioned how they were told, when their child was diagnosed with diabetes, that there would be a cure within the next 10 years.  We were also told that when Tristan was diagnosed at 16 months.  One person that made a comment on a blog said her parents were told this also when she was diagnosed.  She has now been living with diabetes for 22 years!

I think that deep down I always knew that it probably wasn’t going to happen.  But still….. I wanted to believe that it would happen.  I know that it’s silly but I feel a great lost today.  Maybe I’m just tired!

I just wanted it.  I wanted it so bad!  I wanted Tristan to experience childhood without diabetes.  I guess in the past 5 years it has become my dream.  It’s hard to let go of one’s dream!

Oh I want to kick diabetes’ ass!  If I could get away with it I think that I would throw myself on the floor and have a big old temper tantrum!  Think I can get away with it? :)  I think not so I will pick myself up and act like an adult… not that I want to!

I don’t think that I will ever stop hoping for a cure but from now on, I will keep that feeling buried way way down!

Oh and one more thing…. GO TO HELL DIABETES!  You may have won a few rounds…. but the war ain’t over!

Back in November of 2009 Shamae published a letter that was written in her local paper.  The letter, which you can read here, was a complaint directed at a family whose little boy injected himself with something while eating at Burger King.

On January 5th 2010 Kelly shared on her blog an situation that she experienced while at the gym.

Both situations are different but still somewhat similar.  So I’m going to address them both at the same time.

clearing of throat…..

Dear Idiot 1 and Idiot 2,

How dare you?  Do you have any idea how ridiculous you are?  Have you no shame?

Both of you talked about sanitary conditions…. excuse me?  Idiot 2, you are in a public establishment coughing up a lung, not covering your mouth… putting all those germs in the air for others to breath… yes that’s very sanitary.  Idiot 1, that applies to you to.  How can you even suggest that this little boy gives himself an injection in a public bathroom?  Come on!

Idiot 2 have some respect.  Mind your own freaking business.  It’s a good thing that you have no decision power.  Because based on your comment, if you had a choice, you would make all diabetic people go to the emergency room when they need to check their blood sugar?  WOW!  Maybe you should make a visit to the emergency room…. maybe they have some common sense that they can transplant into you!  Alright idiot 1, go away, I’m done with you!

Idiot 2 however I am not done with you…. not by a long shot.  You said “That sort of business should be done in private. How about a little respect for those around you” So if in your opinion this “sort of business” should be done in private does that mean that a diabetic should never be allowed in public?  Because I mean diabetes is unpredictable… there is no set schedule, no map.  Things happen that requires a diabetic to either check his/her blood sugar and/or inject insulin.

Actually I have one better for you…. would you be more comfortable if we had a “special place” just for diabetics?  Would it make you feel better if you didn’t have to share a space with them?  You know this reminds me of something…. can’t quite put my finger on it yet oh well….

You also said “ …..you have no idea how something like that can affect people. People go through a lot in their life and things like that may bring up certain feelings and memories best forgotten”  Wow you have feelings?  You could have fooled me.  You sure as hell don’t act like somebody who has feelings.  Oh I’m sorry getting off track here.  You are right, we don’t know what people go through in life.  Just like you don’t know what this family goes through EVERY SINGLE DAY!  I do and I can tell you that it’s not fun.  So shut the hell up!  If watching a little boy inject himself with insulin to stay alive offends you that much or brings back that many painful memories do you know what?  Seek professional help.

Would you have felt the same way if it would have been a cancer patient who had no hair because of chemotherapy treatments?  What about a person with Parkinson disease?  Would you have felt the same way?  Or maybe somebody in a wheel chair…. I’m sure that would have offended you or your girlfriend.  If not you then maybe it would have offended somebody else right?

So ok, maybe then we should make sure that the diabetics stay in their own “special space” and then, we can send the cancer patients to another “special space” and then we will have a “special space” for people who suffer from Parkinson disease, and then….. WOW you see how quickly this gets…. oh wait I will let Titus finish that sentence for me….. it’s called segregation!  It was banned in the US in the 1960s.

Wait a minute…. how did Hitler get started?  What was he trying to do?

You know Mr. Barber…. I mean idiot 1 if it was your daughter or your son, you would change your tune very quickly.  Actually I really hope that you and girlfriend never reproduce.  I wouldn’t want another human being having your values.

So in closing…. Idiot 1 and Idiot 2 you both make me sick.  You are both sorry excuses for human beings.  You have no compassion.  You should be on your knees begging for forgiveness from the people that you have wronged.  Please educate yourself in 2010!

To the people who stood up to those bullies…. thank you!  From the bottom of my heart thank you!  Because of your actions hopefully my son won’t have to deal with too many idiots when he grows up!

Some of you may know that a few weeks before Christmas my Salter scale broke.  Unfortunately something fell on it and it stopped working.

This was a huge problem.  We use our scale for a lot of things when it comes to managing Tristan’s diabetes.

Adam went online and found the Kitrics Digital Nutrition Scale.  It had some good reviews plus it had 99 more food codes.  Another thing that we liked is that it show the nutritional information just like on packaged food.

So what you will find below is my opinion of both scales.  This is based on my experience with both and my needs for the scale.

Kitrics Digital Nutrition Scale

Nice features:

- The nutritional information is presented just like packaged food;

- 999 already programmed food codes and the possibility of adding another 99 of your own food codes;

- The book is laminated which really nice in a kitchen

When the scale was delivered I was so excited.  We had gone a little over 1 week without our “normal” scale and we found it very difficult.  So yes, for me that was the excitement for that day.

Well my excitement was very short lived! :(  Some of the negative comments from other buyers were because of the lack of backlight on the scale and the beeping sound that it made.  Honestly those things didn’t bother me one little bit.  However, this scale did not meet our needs at all.  Yes it has 999 food codes.  But most of them we don’t use.  One of the things that we use the scale for is Mac & Cheese.  This scale did not offer that option.  It had macaroni….. dry!  Honestly what am I going to do with that?  It didn’t have mashed potatotes, it didn’t have mac & cheese but on the other hand it had a lot of different meats.  Doesn’t help me.

Salter Scale

We were first introduced to the Salter Scale about 1 year ago by the dietician in Tristan’s diabetes team.  We fell in love with it the moment that we started using it.  This Salter scale is not as fancy as the Kitrics.  But it is more suited to our needs.  It offers 900 food codes.  The plate is removable so that you can put it in the dishwasher.  It has Mac & Cheese!!!!  And mashed potatoes and rice.  We can actually use this scale to help us figure out carbs in a dinner.

I love this scale!

After realizing that the Kitrics Scale just didn’t meet our needs we ordered our “old” “new” salter scale.  It arrived today.  I’m excited and so is Tristan.  We have been avoiding Mac & Cheese…. now he can have it again.

We purchased our Kitrics Scale from Amazon for the price of $44.95

We purchased both of our Salter Scale from Cutlery and More for the price of $29.95

It just goes to show, more money doesn’t always mean better!  If you are the parent of a diabetic child I highly recommend using a Salter Scale to help you plan your child’s meal and to get accurate carbohydrate.  I love mine and I don’t want to go without again!

I am going to keep the Kitrics scale as a back up in case our Salter Scale gets broken again and we need to order a new one.  The Kitrics scale is a nice scale it’s jut not appropriate for our diabetes needs!