Invisible Illness...My 30

Because our family lives with invisible illness...and because I saw other D-moms posting this...Here's my 30:

1. The illness I live with is: not my own, but my 14 year old son’s.
   2. I was diagnosed with it in the year: He was diagnosed in 2000 at age 2 with Juvenile Diabetes
   3. But he had symptoms since: He had symptoms for at least 4 months before he was diagnosed.  I really believe he was showing signs for a good 6 months before though.
   4. The biggest adjustment I’ve had to make is:  forcing him to learn and do things himself since he IS 14, and not do them for him.
   5. Most people assume: That he doesn’t “LOOK” sick, so he isn’t.  Little do they know that there is a 24/7 battle inside him.
   6. The hardest part about mornings are: getting him to get up and remember to check his blood sugar as soon as he gets up.  Even after dealing with this for 11 years, he still has to be reminded.
   7. My favorite medical TV show is: when it was on, ER.  Sometimes I watch “the doctors” or Doctor Oz. 
   8. A gadget I couldn’t live without is: his glucose meter/insulin pump
   9. The hardest part about nights are: going to sleep especially on the nights he’s checked and he’s low, or if he’s been sick. 
   10. Each day I take __ pills & vitamins. (No comments, please)
   11. Regarding alternative treatments I: There is NO alternative treatment for Type 1 Diabetes.  You either take insulin via shots or a pump. 
   12. If I had to choose between an invisible illness or visible I would choose: Invisible.  Why?  Because he has an invisible disease, but its manageable and treated daily with his insulin. 
   13. Regarding working and career: I work part time, and my hours/job allows me to take my kids with me.
   14. People would be surprised to know: Im not as strong as I could be. The strength I have is given to me by my God every single day. It is with HIM that I have made it through every day since June 9,2000.
   15. The hardest thing to accept about my new reality has been: There is no cure.  It will NOT just go away.  He will have this the rest of his life. 
   16. Something I never thought he could do with his illness that he did was: There’s nothing he can’t do.  He can do ANYTHING he wants to.  He has diabetes but it does NOT have him.
   17. The commercials about his illness: There are NOT ENOUGH commercials that talk about Type 1 Diabetes.  They are mostly for Type 2.  People NEED to know the difference between the two. Because they ARE VERY DIFFERENT.
   18. Something I really miss doing since he was diagnosed is: We use to be really close, but he began to see me as the bad guy—b/c I was always the one doing most of his care and giving his shots in the beginning.
   19. It was really hard to have to give up: We’ve not had to give up much, because the doctors have said to let him eat what he wants, just cover it with extra insulin. 
   20. A new hobby he has taken up since his  diagnosis is:  Rubix cubes—he’s obsessed! LOL
   21. If I could have one day of feeling normal again I would: get up and go about the day without even thinking about Diabetes and the fact that its been in our lives for 11 years now. 
   22. My illness has taught me: His illness has taught me to focus on relying on the Lord to get us through the tough days—because some are harder than the others. 
   23. Want to know a secret? One thing people say that gets under my skin is: “He can eat that?? How can he eat that if he has diabetes?”  Or, “Oh, my grandma has type 2, so I know all about diabetes.”  Um, no, you don’t—type 1 and type 2 are VERY different. 

24. But I love it when people: Tell me that they are proud of how I’ve handled everything over the last 11 years, and that they are amazed at just how strong I am. 
25. My favorite motto, scripture, quote that gets me through tough times is: 1) Insulin is NOT a CURE.  2)Joshua 1:9
26. When someone is diagnosed I’d like to tell them: That it will be OK.  That God does not give us anything we can’t handle. 
27. Something that has surprised me about living with an illness is: the fact that so many people are so ignorant to the FACTS
28. The nicest thing someone did for me when I wasn’t feeling well was: Just calling and checking on Colton when he’s sick and asking if there’s anything we need. 
29. I’m involved with Invisible Illness Week because: My son has an invisible disease that is a constant battle inside him every single day. 

30. The fact that you read this list makes me feel: Like maybe you will gain just a lil bit of insight as to what its like to be the parent of a kid with a chronic illness.  

Changes....Its Time

 There is a time for everything,

   and a season for every activity under the heavens..Ecc. 3:1

Everything happens for a reason.  Everything happens when its supposes to--there are no accidents.  Everything happens, in God's timing.  

We went to see Colton's new Endocrinologist on Thursday.  What a way for Colton to spend his birthday--at the doctor's office.  We were there all day.  And that is not an exaggeration.  His appointment was just after 1pm and we left at 5pm.  

They did his height, weight, blood pressure and his A1C(average of his glucose levels over the last 3 months).  It was 8.3%.  Not the worst number it could have been but certainly not the worst either.  Typically, for Colton's age, his A1C needs to be in the 7's.  When he was diagnosed, it was 14%.  We slowly over the years, got it down--and it was actually in the 7's.  However, that short time he was in public school--his average went back up. And it went WAY up--back up to 13.  I was NOT a happy mom with those results.

They got us back in room and we waited for what seemed like an eternity.  It was a LONG 30 minutes before anyone ever came into the room.  Dr. Copeland's assistant(I can't remember her name! Im horrible with names!) came in and started going over Colton's history and asked him several questions.  When she started asking him questions about his diabetes, thats when things started 'getting good' in my opinion.  The fact that he does not always bolus or check his blood when he's suppose to-----put it this way.  For someone we do not even know, for them to look at him and say, "Well why wouldn't you do that?  You HAVE to do this stuff...."  That was awesome!

Someone who KNOWS what will happen if he doesn't do what he must do.  Someone who UNDERSTANDS the consequences if he doesn't do what he must do every single day.  Now, thats not to say that his previous doctor didn't know or understand.  I guess it was just the way she said it to him--he needed someone OTHER than Kyle and I to get really stern with him.

Finally, Dr. Copeland came in and introduced himself to us, as well as the clinic's dietician, Amy.

They were all very thorough throughout our visit with them.  Here's the thing--I really feel like they are the change we have needed for some time now. 

Dr. Copeland laid down the law so to speak.  And he told us that he wants to work with us and that he wants to do everything he can--but that Colton MUST do his part.  He can't expect Kyle and I to do things for him.   He must 'man up' and show responsibility and maturity.  There is NO reason or excuse for anything that he has been blowing off or trying to ignore.  Its not going to go away.  No matter how much he wishes it would just disappear...this is his life and he MUST take care of himself.

He has ONE month before we go back.  So, thats ONE MONTH to straighten it up and do everything he's suppose to do.  Now, when we go back in a month, if he's not doing everything he's suppose to do, Im not sure what will happen.  I have an idea...but Im not totally sure it will actually happen.

Changes were made while we were there.  This is where my heart just sank as I listened to Dr. Copeland.  I have made it no secret that I have felt like things were just blown off so to speak or brushed off the last couple of years when we've gone to his check ups.  But to hear the words that came out of Dr. Copeland's mouth at one point...as a mom, its not something I wanted to hear.  It broke my heart, it made me angry and it was all I could do to fight back tears.  

He told Colton, rather frankly, that he felt like Colton's previous Dr had given up on him.  Thats right, given up on him.  Colton's basal rates were maxed out--twice what they should have been for a kid his age.  The basal rate is the continuous insulin going through his system via his pump--just like a normal working pancreas would produce.  That was 1 change that was made.  Instead of getting several units in a 24 hour time frame, he will now get a much smaller one.  This may result in some higher readings--but that is to make sure he focuses on checking his blood when he's suppose to, instead of going 5 or more hours in between times.  He's suppose to check himself before he eats ANYTHING.  That means breakfast, lunch, dinner(3) morning snack, afternoon snack, bedtime snack(3).  Obviously its NOT hard to do the math--thats 6 times right there from the time he gets out of bed.  And obviously, there may be a few other times throughout the day when he will need to test.   Sick days--glucose levels are always checked more on sick days.  Thats something for a whole other blog though.  Getting sick and diabetes are NOT friends at all.

Colton has been on a pump since Tobi was born in April of 2005.  Before he got on the pump, he was getting about 6 shots a day.  His pump is now his pancreas.  Instead of checking himself, and getting a shot, the pump does it for him.   That just means that he checks himself, adds up the carbs he's going to be eating and then takes a bolus of insulin with his pump.  IF he does NOT bolus, then his blood sugar rises and thats BAD BAD BAD. 

Put it this way.  If we go to Sonic, he usually gets a diet coke or a diet dr pepper.  If they screw up and give him REGULAR soda instead....and this has happened before....his glucose levels will shoot up VERY quickly.  And I mean HI.  In fact, if he checks himself, HI is what his meter will say and its not saying "Hello"  HI on his meter means that his glucose is over 600.  That can be lethal.

Any time Colton check's his blood, from now on--anything over 150 will be considered 'high'. His new 'target' range is 80-150.  If he tests, and he's 78, thats considered low and he is to have a snack to treat it.  Anything over 150 is considered high and he will need to give himself a bolus of insulin to bring the number down.

Infusion sets: This is what he uses with his pump--its how he gets his insulin.  Typically, when he was getting shots still, we would give him his shots in his arms, legs, or his booty.  When he started pumping, we would put his infusions in his leg or his booty.  Then it went to just his booty.  NOT ANY MORE!  He can NO LONGER use his booty for his infusion sites.  Dr. Copeland told him he MUST use his tummy, or his upper thigh.  I have asked over and over and over and OVER again in the past about him continually using his butt for his infusions.  I've done the research and I've read lots of stuff.  You MUST rotate and change where you put your infusions or take your shots or it does NO good--b/c scar tissue develops and the insulin can't get through like it needs to.  

We are excited though--he's decided to try a new infusion set, and we will be checking it out this week!  Its called a Mio: http://www.minimed.com/products/infusionsets/mio.html

Self Discipline: He HAS to prove and show that he is in control of his diabetes.  Not me.  Not Kyle.  Not my parents.  Just Colton.  He has to prove he's capable of doing exactly what he's suppose to when he's suppose to.  He either has to write down each and every blood sugar in a log book, or he will have to download his meter to the computer and then we'll have to print it up, and take it with us when we go back to the doctor in a month.

I asked Colton earlier this morning when he got up if he checked himself and what he was and as I did, something said "Nope, don't do it.  Don't ask him.  He's gotta prove that he is capable of doing stuff!!!"  So at that moment, I made the choice to not say a word to him.  I will NOT ask him if he's checked his bs; what he was, or if he bolused.  

Im not sure what they will be, but Im sure there will be consequences when we go back to see Dr Copeland in a month.  

So, changes are coming, at least thats what I feel.  And its indeed time for changes.  If changes are not made, and made for the better, I don't want to think about what the consequences could be.  

What I do know, is that it was not an accident, or a 'chance' thing, that we heard Dr. Copeland's name within 2-3 days time.  And I was also told by a dear friend, that she had been specifically praying that we would somehow make a change in doctors.  You know who you are--thank you for your prayers and your sweet friendship.

IDDM

If you were to see the letters IDDM, would you know what they mean?  While I myself know what they mean, it just really hit me today, how many people really know?  And why did I come to this realization?

When Colton was dx'd with his diabetes in 2000, one of the first things that we did, was to get him an I.D.
bracelet.  Why?  Because we thought it was important for everyone to know that he had a serious health condition.  I found a website and ordered one immediately.  My folks bought his first bracelet.   It was blue, and engraved on it:
Colton Otwell
Diabetes
It also had the little medical emblem on it.  He wore it daily, either on his wrist or around his ankle.  The only time we ever really had anyone 'notice' it, was when he was getting his picture taken, later in the year, after he was dx'd.

It was October, 2000.  We'd gotten his diabetes under control enough that he was starting to put a little of the weight he'd lost, back on.  His little face was just as cute as could be all chubby.  He was a cheese ball when he was getting his picture taken.  The photographer said something about hiding the bracelet.  My reaction: "Why?  Its part of his life, and Im not hiding it."

Rewind back to June when he was newly dx'd, had I actually seen/heard this situation, you can bet I'd have said something.  We hadnt known very long about the D, in fact, it had only been a few weeks.  Kyle's parents had came down from Tulsa for the weekend, so we all decided to go to the mall for a while. 

First thing we did when we got there was to hunt down the bathroom.  My mother in law and I took Colton in the womens bathroom with us--we needed to wash his hands to check his blood sugar.  I proceeded to hold him up at the sink and help him wash his hands.  Sat him down, got everything all ready, and poked his little finger, checked his blood, put his stuff away, and went back out to find Kyle.  A few minutes later, my MIL came out of the bathroom, and asked if I'd heard the two older women who were in the bathroom---they were oh, about 70-75.  Apparently, they watched as I checked Colton's sugars.  And as I left the bathroom my MIL heard one of them say: "Now why couldnt they have done that at home??!!"

UM, HELLO!!!!!!!!!!!!!!!!!!!!!!!!!!!!  He's 3, and he's got diabetes!!! Can't check it at home, leave to go to the mall and then wait till we get home to check it again!!!!!!!!   And let me tell ya, I have never forgotten that.  And to this day, when I go to that mall, and I go into that same bathroom--thats what I always think of!! Geez!!!!!!

Here's one I hate to this day: Scenario--We are out eating after church on Sunday.  We sit down, check out the menu, settle on our food, order, and wait.  While waiting for it to be served, its time to check Colton's bs again.  So, I pull out his little bag, get his meter all ready, and grab an alchol swab, poke his finger, and check his blood.  DO YOU KNOW HOW MANY PEOPLE STARE!!!??? Seriously!!  Its rather annoying!

I was thinking today about different situations like that today, that we've experienced since he was dx'd.  Its amazing--people are dx'd with this disease every single day.  Adults, children, teens, and adults--yes I said it twice.  It doesnt care what your age is.  You can be 30 and still be dx'd with Typle 1 Diabetes. 

Anyway, how many people do you actually SEE when you are out and about everyday, and its apparent that they have D?  Now stop and think, seriously?  Think REALLY REALLY HARD.
Ive made it a point to look really hard.  And as common as this disease is coming, you just really don't see it.  And if you do, those ppl are type 2.  There IS a difference.

I remember the first time we participated in the JDRF Walk To Cure Diabetes.  It was in 2001, the one year anniversary of Colton's Dx's.  Talk about seeing  A LOT of ppl with D--WOW.
I found myself checking out all of these ppl.  There were tons of ppl there.  And it was not just kids--there were as many adults as kids.  Next thing I know I find myself looking to see just how many ppl were wearing I.D bracelets.  What I found?: Hardly anyone was wearing a bracelet.

Colton's always had an ID bracelet, since he was dx'd.  Up until about 2 or 3 years ago.  He had one, and the engraved piece came off and that was it.  I'd just spent $30 on a sport i.d bracelet and I was not going to pay that much for another one.

There are TONS out there to choose from.  Im not exactly sure why I decided it was time to get him another one.  All I know, is that Im glad I did.  Its something thats just as important for him to have with him, as it is for him to have all of his testing supplies.  He can't walk out of the house without his glucose meter, finger poker, lancets, test strips, and his insulin.  He has to make sure he's got infusions and resevoirs for his pump.  And now, he'll need to make sure he's got that ID tag with him.   WHY??  Because, IF he goes somewhere, and he's not going to be around ppl who are aware of his health--then at least his necklace will alert ppl to his diabetes.

So, I must ask again.  Do you know what IDDM means? What would you do, if you were out and about at the grocery store or mall, and you saw someone just collapse in front of you?  Would you just keep going, and walk around them?  Would you freak out and start yelling for help?  Or would you see what you could do to help them out?  What would you do if you saw IDDM?
Would you know that it means Insulin-Dependent Diabetes Mellitus

I want my son wearing an ID, so that IF something happens and his dad or I am not around, hopefully, people will be smart enough to see his ID tag.  Its a matter of life/death.  I can not say
that enough.  EDUCATE yourself on Diabetes---TYPE 1 and TYPE 2 are DIFFERENT. 
And to KNOW that, you must educate yourself.  You never know what information you may learn, that may just help someone else.