V.I.C.T.O.R.Y

I know this week is Diabetes Blog Week. And I wish I had planned a little better to participate.  Shame on me for not doing so.  But know I support the DOC and all who have participated . . . and have enjoyed reading!!

But I have a victory to share.  A small one but BIG in our eyes because we have fought it for two and a half years.  And truth is, with diabetes and so many variables, we may never win it again!

With diabetes there are “trouble foods.”  Foods that even though we may know the exact carbs and consume that amount, Ryan might have serious spikes or delayed spikes or a low then a spike or a combination of those.  Some foods are pretty common.  Some people struggle with different foods.  It’s all about how the body breaks down the food and how quickly, and the other variables that always come into play, like exercise around the time of eating and anything and everything that might effect blood sugar.

Ryan’s main trouble foods, that we know of right now, are pizza, italian pastas, ice cream and the “devil’s food” – french fries!  We don’t stop Ryan from eating these foods, but we know ahead of time that these four are his worst to control and vigilance, extra vigilance, is necessary when he eats these.

Last night, after a “Monday” of a Tuesday, I decided to order pizza.  We have pizza enough that I try different dosages all the time to try to figure it out.  Papa John’s for a large cheese pizza is 40g carbs per slice.  Ryan eats two pieces, crust and all (he dips in Ranch).

His sugar when he ate dinner was 91.  He bolused for 80g carbs and extended his bolus, 40% for three hours.  Which means we gave him 40% of his bolus at dinner and the other 60% was to be delivered at a steady rate for the next three hours.  We allowed the PDM to reverse correct or take insulin away, to get him up to 100 (he was just at 91) and then he consumed his pizza and was a happy boy!

At bedtime, two hours later, he was 77.  He wanted peanut butter crackers.  So he bolused for the 24g carbs and I bypassed the reverse correction to get him back up to 100 because I knew the pizza was still working (pizza tends to work for at least five hours, hard for the body to break down because of the fat and  complex carbs in the wheat of the dough).

A little after 11p, when Jason and I went to bed, he was 91.  Now, normally, that’s too low to go to bed on.  I would AT LEAST back off on his regular basals (inulin delivery) for a few hours to bump him up or give something like yogurt to get him good and over 100 to insure a good number with no drop all night.  But, pizza still on board.  I did nothing.

I got up at 3a and checked him and he was 149.  I did nothing.  His normal range is 80-150.

Then at 7a this morning when he wok up, he was 93!!!

WOOOOO HOOOOOOOOOOOOO!!!  Can you hear me yelling from there.  V.I.C.T.O.R.Y.

Now, what I must add was that Jay and the boys went outside and played for about an hour after dinner which I am sure was a contributing factor.  BUT STILL . . .

I was happy, Ryan was happy . . . and I just wanted to share!

Good Wednesday!!!

Soap Box

Don’t believe everything you hear, even if it comes from someone who has the “Dr.” in front of his name.

I sat down to eat a bowl of honey nut flakes because I realized I hadn’t eaten this morning when I became a little nauseous.  Ollie, our newest addition to the family, a year old  Yorkie, curled up next to me on the couch and I turned on the tv.  I hit a few wrong buttons and ended up on The 700 Club (yikes).  As I started to turn the channel, I heard the word “dia-besity.”  It immediately sparked my curiosity.

The guest on the show was Dr. Mark Hyman autor of The Blood Sugar Solution.  He describes “dia-besity” as that “whole spectrum of problems from a little bit of belly fat to pre-diabetes to diabetes.”  He lumps diabetes into an “obesity related illnesses.”  Not one time in this interview did he distinguish between any kind of diabetes.  All diabetes was the same.

In his book, he talks about myths of diabetes:

• Myth  - Diabetes is genetic.  He says that we do not get, not are we predisposed for getting diabetes because of our genes.  He says it’s the eating habits of our parents instilled upon us that give us diabetes.
• Myth  - Diabetes is not reversible.  If people would just eat right and use the grocery store as their “farm-acy” (he’s soooo freakin’ clever with his words, isn’t he?), they can have their pancreas return to normal and be off insulin in 12 weeks.  ”Food turns on the genes to create health and reverse diabetes.”
• Myth  - Once you start on insulin, there is no going back.  That’s what we are taught, but it just isn’t so.  We are putting things into our bodies that can actually be stopped and our bodies would resume their normal function.

And there were more “myths”  but I couldn’t stomach them.

This is something that for my blood pressure and stress level I should just let go.  We are never going to change the general MISconception that all diabetes is alike.  WebMd starts their description and explanation of diabetes with this sentence, “Diabetes is a number of diseases that involve problems with the hormone insulin.”  There isn’t just ONE type of diabetes and obesity is not the ONLY reason people get diabetes, even Type 2.

If, and I cannot stress the IF enough, you have Type 2 diabetes because of being overweight only, Dr. Hyman’s book and/or thoughts might be of some use to you.  The bottom line is, there is hope for you to get off the medication, be able to stop taking insulin and be cured of your Type 2 diabetes.  But again, I say, if the only reason you have diabetes is because you are overweight.

If you are a Type 2 diabetic, it is possible that you have diabetes and you are NOT overweight and never have been.  Diabetes is simply the body not producing or properly responding to the insulin horomone.

I realize that we are a much more overweight country as a whole.  We have more of everything than most countries in the world.  Including  food.  We are RICH in food.  And we are busy.  Fast food is almost an epidemic here.  (And I do love my fast food at times.)  And a very common result of eating wrong and not being fit and trim is Type 2 diabetes.  We are even seeing it in children because mom and dad have to work and they’re eating out more or eating microwavable food or quick foods and missing out on fruits, vegetables and good proteins.  I understand all of that.  I get it!

But to lump all diabetes, Type 1 & Type 2 and LADA and gestational, into an obesity category and come up with a ridiculous term like “dia-besity” goes beyond the insane and ridiculous.

And let me step up on my Type 1 diabetes soap box.

Attention, Dr. Hyman:  here are Myths of Type 1 Diabetes, the type of diabetes my son has:

• Myth – Diabetes is not genetic.  The first thing they asked us in the hospital when Ryan was dx’d was if anyone else in our family had TYPE 1 DIABETES!  Although we do not, it does not mean that it is not genetic.  Because Ryan is a Type 1 diabetic, there is a 10% chance of his children developing Type 1 diabetes.  And, if we so choose, we can have Ethan and Aaron tested to see if they have the genetic predisposition to develop Type 1 themselves.  But if you want to learn more about genetic risk factors of Type 1 and Type 2 diabetes, go to the Joslin Diabetes Center and read more here.
• Myth  - Diabetes is reversible.  For Type 1 diabetics, whether dx’d as a child or as an adult, TYPE 1 DIABETES IS NOT REVERSIBLE!!!  You have no idea ho much I wish it was.  Type 1 diabetes is an AUTOIMMUNE DISEASE.  At some point for some environmental reason (virus, immunizations, etc.) we will never exactly know, Ryan’s immune system decided to fight the beta cells in the pancreas that make insulin and treat them as a germ of sorts and attacked them over and over, killing them off until there weren’t any left (there’s the most raw layman’s terms I can think of).  He is not capable of producing insulin.  And no one can live without insulin, not even Ryan.
• Myth  - If on insulin now, you may not always have to be on insulin.  Hm.  Adults and children with Type 1 diabetes and Ryan will ALWAYS have to be on insulin.  ALWAYS.  Their is no medication, diet, exercise, herb, plant or magic that can be done to make the body reproduce the beta cells and make them begin to make insulin again.  Once those cells are destroyed, they are gone.  Would love if the pancreas would regenerate these cells like an earthworm regenerates it’s body if part of it is severed, but IT.JUST.ISN’T.SO.

And I think there are reasons that people with Type 1 diabetes and parents of children with Type 1 diabetes get so frustrated:

1. You cannot blanket Diabetes.  We do not blanket cancer and say there is only one treament, one drug, one chemo/radiation, one outcome.  We do not blanket allergies and say that if someone has allergies of any kind that they all need EpiPens or don’t need EpiPens because there are allergies from peanut to pollen, from dogs to drugs.  Type 1 diabetes is not the same as Type 2 diabetes.  And the more I learn (because diabetes is so vast that I am still learning!) all Type 2 diabetes are not the same or at least do not have the same cause or require the same treatment and care.
2. When you tell someone your child has diabetes or they see the pump or the sugar check, all too often you can see it, the questions, the pity, the judgment of me as a mom to not have fed him properly or that I gave him too much sugar to have diabetes!
3. The comments to RYAN, who is SEVEN, that he will outgrow or change his diet and/or exercise and he won’t have diabetes anymore are heartbreaking.  UNLESS THERE IS A CURE, RYAN WILL ALWAYS HAVE TYPE 1 DIABETES.
4. All this misinformation minimizes the complexity and severity of the disease.  People think that if you have diabetes of any kind that you did something wrong and if you will fix it or change a few habits, it will go away.  Read this post by Meri and it will convince you otherwise.

Sometimes I have to write when I am mad . . . for them.
(see their pumps in the pic?)

This is particularly sensitive with me right now.  Ryan is getting old enough to see commercials, tv shows, and read what media and ridiculous doctors out to make a buck are saying about diabetes.  He gets mad when people say there is one cause – obesity – and it can be cured by what he eats.  He knows better.

And two weeks ago, Ethan came home upset about his Health class.  They were talking about taking care of the body the comment was made that you must eat right and exercise or “you’ll get diabetes!”  During the first lesson, he just listened and didn’t say anything, and just got mad.  Then last week, the lecture continued – The fight against American obesity and diabetes.  And he spoke up.  He set the teacher straight.  He told him about Ryan.  And he asked that the lesson distinguish between Type 2 and Type 1.  GOOD FOR YOU, ETHAN!!!  But the kicker was when a friend after class said, “Ethan, I’ve seen your brother, he’s not fat.  How does he have diabetes?”

WE ARE POORLY AND WRONGLY EDUCATING ABOUT DIABETES.

And I’m sad.  And angry.

And I hate that this is a battle that Ryan will fight ALL OF HIS LIFE.

The Number

Lots of things come along and become a part of your life when diabetes enters.  Insulin, carb counting, exercise (viewed much differently after dx), highs, lows, etc.  All having the common quality of UNPREDICTIBILITY.

But there is at least one constant for children dx’d with T1d – the quarterly endocrinologist appointment.  (I really don’t know if adults go this frequently or not.  ??)

With all the variables and possible complications and the 24/7 maintenance of the disease, this is just a way of keeping in touch with our diabetic team to learn about the disease and how it effects our child. Ryan’s height, weight, and vitals are taken every appointment.  And they review blood glucose logs to see where we are, to offer suggestions, answer questions, and hopefully give encouragement.   But the biggie about going is the _______ (you fill in your own adjective there) A1c test.

The American Diabetes Association gives this definition and explanation of the importance of an A1c and what it does:

• The A1C test measures your average blood glucose control for the past 2 to 3 months.
• It is determined by measuring the percentage of glycated hemoglobin, or HbA1c, in the blood.
• Check your A1C twice year at a minimum, or more frequently when necessary.  (or quarterly, like we do)
• It does not replace daily self-testing of blood glucose.

Checking your blood glucose at home with a meter tells you what your blood sugar level is at any one time, but suppose you want to know how you’re doing overall. The A1C test gives you a picture of your average blood glucose control for the past 2 to 3 months. The results give you a good idea of how well your diabetes treatment plan is working.

In some ways, the A1C test is like a baseball player’s season batting average, it tells you about a person’s overall success. Neither a single day’s blood test results nor a single game’s batting record gives the same big picture.

Here’s the Purpose of the A1c (still according to the ADA):

• Confirm self-testing results or blood test results by the doctor.
• Judge whether a treatment plan is working.
• Show you how healthy choices can make a difference in diabetes control

Here’s a record of Ryan’s A1c’s since dx (bg averages are taken from Accu-check website):

Date                                         A1c          Av BG

December-09	> 14	400+	At Diagnosis
February-10	8.9	209	Two months in
May-10	6.8	148	Woo Hoo!!!
August-10	6.7	145	Still on track, baby!
November-10	8.6	200	U.G.H.  — Devastating
December-10	8.2	189	Lovin’ pumping
February-11	7.4	166	Ok, I’ll take it!
May-11	7.2	160	Improving
October-11	6.9	151	Perfect!!!
January-12	7.8	177	Oh, the holidays . . .
April-12	7.9	180	What the heck!!!

A brief explanation:

A non-diabetics goal is 6.0 or less (according to Joslin Diabetes center).  The American Diabetes Association recommends 7.0 or less for a diabetic.

A diabetic person experiences highs and lows.  The consistent highs over time, years of time, can cause the devastating complications we often hear about (blindness, heart, kidney & liver disease, amputations, nerve damage, coma, etc).  The lows on the other hand can cause more immediate scary and potentially life-threatening situation like passing out, seizures and worse.  So the constant battle for balance and target numbers (for Ryan between 80-150) is “twenty-four sevenly exhaustive”.   (How do you like that for poetic license?)

So as you can see, not one of those A1c’s, or three month sugar averages, have technically fallen inside his target goal.  Hm.

Endocrinologists are all different. They say and suggest and even scold for different things.  Some say that a child Ryan’s age (7 years) is good if he is in the 7s.  The endo we had in Dallas and the one here in Baltimore follow that same philosophy.  In my experience (and I feel like I’m treading on thin ice here, so I say again IN MY EXPERIENCE), once I get to the upper 6s, which Ryan has had three times in near two and a half years, the first question out of their mouth is, “Are you experiencing a lot of lows?”  Where an A1c in the 6s is great, they think that IF you are trading off with a lot of lows or “feeding insulin” all the time, then it’s maybe not as productive as it may appear.  While some encourage and even expect a child’s A1c to fall into the range of a non-diabetic adult and be and stay between 5.5-6.0 or even lower.  And some are actually able to get there in a healthy manner.

And where we are, with Ryan’s body and situation, we WORK and I mean W.O.R.K. to get into the 6s.

So what’s a momma to do?  Who should I listen to?  What should I strive for?  And more importantly, what is best for Ryan’s body?

I write this making no excuses for the relatively “higher” A1c numbers.  Do I wish we were between 6.0 – 6.5 every time – ABSOLUTELY.  And I have really had to work on not having some “A1c envy” at times.  Shoot, those who know me best know that the 8.6 in November 2010 sent me on a downward depression spiral, convinced that I was hurting Ryan.  But even the last one in April of 7.9 really messed me up for a few days.  I was sure there would be an improvement January’s 7.8 – and I was wrong.

But here’s a few things those wonderful d-moms and a specific T1 adult (yes, Pat, I’m talking about you) told me in the pit of my depression that I must constantly remind myself of every three months:

1 – I am actively participating in Ryan’s care.  I’m counting every carb and sometimes I mess up, miscount, over or underestimate.  I’m checking blood sugar levels an average of 8-9 times a day and making necessary adjustments.  I’m doing basal testing when necessary.  I’m checking at night, at 3am, all night if I need to when I need to, keeping his levels as closely monitored as possible without losing mine or Ryan’s insanity.  I’m doing a good job.  Let me tell myself again, I’m doing a good job.  And D-mom reading this . . . YOU.ARE.TOO!

2 – Just like my body is different from yours, it’s make-up is different.  For example:  my metabolism works at a different speed than yours (I’m willing to bet – slower), some things I eat hurt my stomach and don’t hurt yours (like pork and Papa John’s Pizza – I love that stuff but it KILLS me) and prescription tetracycline breaks me out in deadly hives while for someone else it can clear up acne and leave your skin clear and silky soft.  As my body differs from yours, Ryan’s body is different from other people with T1 diabetes.  He absorbs insulin at different rates, sometimes because of growth or health or seems to not absorb at all at times.  His diet is different.  His activity and schedule is different.  His ratios, his basals, the rate his body digests foods is different.  Ryan’s sugar does not elevate with ketchup, sf syrup or ranch salad dressing like others do, so we never count the carbs for any of those if eaten with other carb covered foods.  His regiment for diabetes is unique to Ryan and Ryan’s only because his body is unique -with or without diabetes.

3 – And because of numbers 1 & 2, I should not compare Ryan’s numbers to any other person with T1 and be hard on myself or think that I am hurting him.  I.SHOULD.NOT.COMPARE.

And D-mom reading this . . . NEITHER.SHOULD.YOU.

Let’s focus on being happy for that other child, that other adult.  Congratulate their number.  Celebrate with them.  Do that T1 “Happy Dance” in their honor.  We would want them to do it for us if the roles were reverse.  A true friend rejoices when you do.  So return the friendship.  Your day will come.

But if you walk out of the endo’s office a tenth of a point higher or three points higher — Don’t be jealous.  Don’t get depressed.  Don’t fear.

And remind me of this if we go in June and we’re still in the upper 7s!

Our children’s bodies are unique.  Some are more “brittle” than others.  Some have an easier time managing swings.  Some of us (not including myself here) just simply figure it out earlier or for a time or luck out with their experiementing with temp basals, extending the bolus or changing basals.  Maybe what’s good for one, isn’t good for another.  Maybe to get Ryan’s A1c to 6.5 or less would mean a lot of scary lows.  Lows that would cause seizures, passing out or keep him from being the happy, active, constantly moving boy that he is.  Maybe it wouldn’t.  Maybe it would be good for him.  Maybe he would settle into the lower averages just fine.  But living with diabetes is a process.  A trial and error process all too often, even an experiment sometimes.  A guessing game.  I try hard to make it an educated guess, but when that meal is placed in from of him at a restaurant and it’s not exactly what you thought it was but you aren’t about to tell that little boy “no” when his eyes light up because it looks so good – yea, I do guess and become extra diligent for the next few hours.

We need to take the advice we give our children.  ”Be happy, knowing you did your best.”

So the next time you are getting ready for that endo appointment and you get that nervous-just-before-a-test feeling in your stomach again.  Remember, it’s just a number.  A number that tells us where we have been so we know what plan of action to take to get where we are going.

D is for Compassion

Ryan is in a class with a child who has autism. I met P when I did diabetes education in his class several weeks back. He is a sweet child that spoke to me and said something about Ryan being his friend (I can’t remember exactly how he said it). Ryan enjoys being around P, talks to him, works to include him. His teacher has always been very impressed how Ryan doesn’t shy away from P.

Last week, and for about ten days, P’s teacher that goes with him to classes, was out on sick leave (minor surgery or something). P had a sub all ten days.

And about that time, Ryan started to show a little bit of anxiety going to school, that seemed to get worse every day.

Last Thursday, I was called by the nurse. She said I probably should come get Ryan. He was weepy and inconsolable. What had happened was P had an “outburst” (forgive me if that’s not the correct word to use) and had to be removed from the classroom. P was very upset. And it scared Ryan to death. I tried to get him to stay. But the nurse got back on the phone and recommended I come pick him up because she did not want him to be afraid at school. On Friday, Ryan said P wasn’t in class (perhaps he was absent).

Monday, P was back in the classroom but I was called again because he was upset again. He feared P having bad day. The “unknown” got the best of Ryan. So, I decided to go get him, but as timing would have it, I went in time for lunch and he thought I was just coming to eat with him. So, I did and then told him I would see him in a few hours. He was reluctant, but went on with his class.

During this time from Thursday to Monday, I spoke with two administrators and his teacher to try to get some advise on how to 1) calm Ryan and teach him how to deal with HIS anxiety and 2) the correct vocabulary and explanation specific to P to help him understand where P was coming from. I cannot stress enough how compliant and helpful these three key players at school were and how they so magnificently worked to meet P’s needs along with Ryan’s anxiety and putting neither above the other.

On Monday night, we talked a lot about P. As God would have it, all this happened during the month of April, Autism Awareness Month. And because of the month, one of my friends, who has a child with autism, posted daily facts and helpful suggestions/hints/insights about Autism and raising a child with autism. I cannot stress enough, Angie, how this gave me wisdom and insight in talking to my boy.

The main thing that I stressed with Ryan is schedule. How P needed schedule, that it made him feel safe and secure. And I compared that to Ryan with diabetes. Ryan checks his sugar at school at 10:30a, 12:30a (at lunch) and 2:30p and if someone told Ryan that IF he could not check his sugar at his scheduled time (because he gets up and goes completely on his own at the right times), that it would be very upsetting and that maybe he would cry or tell someone and be upset and be nervous. I told him it was the same with P. That he has a schedule. He has classes he goes to at certain times and has all year. But the big thing those 10 days is that he had a substitute teacher and that he was probably missing Mrs. F and the “acting out” is how he showed it. And I told him that just like Ryan has a special schedule he needs to follow to feel safe, P has the same. And from that point, he seemed to get it despite his nervousness.

On Wednesday, Mrs. F, P’s regular teacher, returned. Ryan’s teacher talked to him privately that it may take P a few days or so to get settled back in to routine and that if P has a bad day, he shouldn’t be afraid, that Mrs. F was back and it would all be okay.

At 1:00 on Wednesday, I got a phone call from school. It was Ryan’s teacher. She started to conversation with, “I felt I needed to call and tell you about something that happened today.”

My heart sank.

She said she had told Mrs. F about Ryan’s anxiety with the difficult days she was absent and said they needed to pay special attention to Ryan as well to make sure he’s okay. She requested that in media (library class) that Mrs. F do what she could to have them sitting apart, just for a few days, until Ryan felt more settled with the situation. Mrs. F agreed and said she’d see to it.

So in media, they were sitting at different tables. The librarian gave a little lesson then had them partner up for an activity/assignment. The librarian asked the class, who would like to be P’s partner for this assignment. Mrs F said that after a moment’s pause, a little hand slowly raised until it was fully extended in the air.

The raised hand was Ryan’s.

Mrs. F said she started to redirect the situation, and choose a new partner for P. But then she thought, “Why?” He’s volunteering. Leave it alone.

She said that it went perfectly. They worked together well and that both boys were so proud of what they had done together with the assignment.

And I have to tell you I burst into tears on the phone and was so stinkin’ proud.

When he got home that day, I asked him how his day was and he said “Good.” That he wasn’t nervous at all. But said nothing specifically about P. So I waited. I wanted him to tell me.

But he didn’t. So finally, that evening, I asked him about media and partnering with P. He acted like it was no big deal. And so I tried to follow suit with that. He talked about how he likes P and how he likes to “watch him learn.” “He’s so smart,” he said. And continued to tell me how they’re kinda the same. That P does things best for his autism and how Ryan does things best for his diabetes.

I could not have taught him that. That’s God given. That’s compassion. And dare I say, that’s diabetes given?

Would Ryan have understood that sometimes we all just need to do things a certain way to feel secure, to get the job done, to be our best WITHOUT diabetes? Maybe. But in my heart of hearts, I believe diabetes has heightened his awareness that we are all different in our own way and he doesn’t have to be afraid of what he doesn’t know or maybe doesn’t fully understand.

We all need to be more like Ryan and P. Friends. Different, but the same.

“I will praise You
because I have been remarkably and wonderfully made.
Your works are wonderful,
and I know this very well.”

Psalm 139:14

On his field trip to the Science Center

Ryan’s Story 2012

Just an updated video on the basics of Ryan’s diabetes

It’s Been Awhile . . . Too Long

It’s been since the fall that I have posted on this blog.

And it’s NOT because Ryan does not have diabetes anymore.  (I actually chuckled when I wrote that.)

And there’s really not just one reason for my absence.  In fact, there are many.

But first I should just give a brief rundown, an explicatory timeline of sorts, to let you know what’s been going on.

October 26th was my last post.

October 31, 2011 – We trick ‘r treated and we had a low or two that was welcomed because he just grabbed candy out of his bag.

November 14, 2011 – Ryan and I did a big educational day in his school class for WORLD DIABETES DAY.

November 24, 2011 – On Thanksgiving, we (Jay and I) dressed in our Ravens gear and watched them beat the San Fransisco 49ers.

December 17, 2011 – We CELEBRATED two years of successful care of Type 1 Diabetes.  We reflected on where we were, what we have learned and who we have become because of and in spite of diabetes.

December 22 – 31, 2011 – We flew to Baltimore (no diabetes issues in the airport/with security whatsoever in either direction) to see Jason’s family and also spent a few days in Jersey with my sister

January 6, 2012 – Endo appointment and a hard A1c 7.8 (just writing that makes me feel naked).

January 11, 2012 – Jason was offered and accepted a position in Westminster, Maryland.

January 27, 2012 – First day at the new job

****Important to note that Jason was in Maryland and the boys and I were in Texas for 15 days.  Longest 15 days of my life, for ALL OF US!!!

February 11, 2012 – We moved from our home in Murphy, TX to Westminster, MD

February 28, 2012 – First day in a new school WITH A NEW NURSE

March 21, 2012 – First appointment with a NEW ENDO (A1c not so good AGAIN 7.9 but I will blog and explain all that later)

March 25-26, 2012 – I had a visit from my wonderful D-MOM FRIENDS to lift my spirits (with all the adjustment) and just coming to my rescue when I needed them most.  And I must quote Tina Bell as I look at this picture and am so thankful for the friends they are, “If not for diabetes . . . “

April 21, 2012 – Our first JDRF Walk for a Cure in Baltimore, MD

April 27-29, 2012 – My sister and nieces DROVE to see us for the weekend.  First time in a long time we were close enough for her to drive to me.

A lot has happened (this definitely isn’t all).  We have gone though so many changes . . . so many adjustments . . . adjusting still.

But one thing remains the same – Ryan still has Type 1 diabetes.  The disease still continues to throw us curve balls, teach us about ourselves, test our strength and make us proud of one another for the courage, resolve and compassion shown in the face of such an exhaustive disease.

So I figure, it’s time to get back to writing.

It’s time to pick up on keeping the record of all our victories.

It’s time to continue to share, support and educate about our journey with Type 1 diabetes.

It’s time to again EMBRACE DIABETES.

Blue November

Last Year

November is National Diabetes Awareness Month and November 14th is World Diabetes Day, the birthday of Dr. Frederick Banting who discovered insulin in 1922 and won the nobel prize for his discovery the following year.

It’s important to educate about Type 1 Diabetes (as well as Type 2).  It’s important to know the signs and symptoms of T1d.  We did not know them and Ryan was a very, VERY sick little boy before we took him to the doctor.  We do NOT want any child or adult to be uninformed and unaware.

We also want people to understand Type 1 diabetes more.  The stereotypes and myths and the misleading of the media all serve as negative factors for Ryan in how he is perceived and his care.  The education for school, church, babysitting, etc is exhausting at times and people just need more of a general knowledge of the disease.

And we must educate so people quit saying rather harsh and ignorant things about diabetes in front of Ryan that not only are often wrong, but just flat rude to say in front of a child.

I have to take the time to plug about some of the myths of Type 1 Diabetes:

• Neither Ryan, nor Jason & I, did ANYTHING wrong for Ryan to get diabetes.  We could not prevent it, nor can we cure it.
• EVERYTHING Ryan eats, if it has carbohydrates at all, has to have insulin to match the carbs in order to stay healthy and well.
• If Ryan never had sugar again and exercised like a maniac, he could NOT get off insulin or be cured of his diabetes.
• Ryan can have candy, sweets, cake, ice cream, pizza, etc just like any other child/person.
• Ryan will NEVER outgrow his diabetes.
• Insulin keeps him alive . . . IT IS NOT A CURE.
• With Type 1 Diabetes, you canNOT ween yourself off insulin, your body produces no insulin, your body needs insulin to live; therefore, insulin is a MUST.

These are my top 7 biggest pet peeves about the PERCEPTION of Ryan’s disease. And since it is November is awareness month, I thought I would take the opportunity to throw that out there.

Off my soapbox and happily moving on . . .

I still am amazed at how many people turned their pictures “Diabetes Blue” on facebook in honor of Ryan for the month of November last year.  You will never know how much it encouraged me, but to see Ryan’s face light up like it did when I would show him friend’s pictures was priceless.

I will again be turning my profile pictures blue the whole month of November.  But this year, if you would like to get involved, I’m asking that you participate this way:

1)  Wear blue on Fridays.  Now some of you have different themes at your job and I get that.  But if you can, any or all Fridays in November, wear blue.  Take a pic and post it!

2)  Wear blue on November 14th, National Diabetes Day.  Take a pic and post it!

3)  Change your profile picture to blue on November 14th.

4)  Of course, if you like, keep your profile pic blue all month!!  ;)

Will your picture be on his collage?

Last year, I made a notebook full of encouragements for Ryan when we celebrated how fare we’d come on December 17, 2010.

This year, I’d like to make a collage for him of those who participate in blue for Diabetes Awareness Month and frame it for him on December 17, which will be his 2nd “dia-versary” (two years since diagnosis and we will celebrate how far we have come again).  If you change your profile pic to blue, I will probably “rip” it off facebook and print it to add to the collage.

But with all the November Blue-ness, I am asking that you always pray for Ryan and the family.  Diabetes is definitely a blessing in that it is a maintenance disease, it is not terminal, it is not physically crippling IF it is managed properly.  But with that said, it, again, is MAINTENANCE, constant and forever.  Sometimes it’s exhausting.  Sometimes it’s overwhelming.  Sometimes it just breaks your heart.  And prayers, I believe, are the key to the day in, day out regiment to it all.  And we so appreciate your prayers.

Remember:  November Blue for Ryan and diabetics all over the world!!

For Ryan

D-momma, Take care of YOU

Of course I missed yesterday’s No D Day but I did start a post that I never finished so I’ll finish it now.

We moms can get so caught up in the dailies that we forget something very, VERY important – OURSELVES.  We get so busy with laundry, dishes, school, practices, homework, dinner, shopping, boo-boos, accidents, schedules, appointments, socials, church, work and everything else that we often forget to take time to simply take care of ourselves.  And then add D or any maintenance disease, condition or disorder and it’s doubly hard.   And so often the time in the day runs out before we even think of ourselves.

But the truth of the matter is that our families, friends and co-workers all depend on us taking care of ourselves.

And too often, we feel that making ourselves a priority or taking time for ourselves is taking away from our family or just flat being selfish.

But it isn’t . . .

And what happens, over time, is that we give and give, clean and go without sleep, throw our hair up, put sweats on with no make-up and totally forget to take care of the one that takes care of so much and so many . . . ME.

For several months, I have felt like poop.  It wouldn’t matter if I got a good night’s rest, if I grilled instead of fried, if I cut out responsibilities or activities to not be so busy, I still felt the same.  Used up and Run down.

I was failing.  I was frustrated.  I was fatigued.

And I was sad.

I was growing to like what I saw in the mirror less and less.

And not only was I cheating myself physically, it was beginning to take a mental toll.

So one Sunday, Jay and I had friends over for lunch that had just taken the Advocare 24-day challenge.  They both had lost weight and inches.  The both were feeling better and feeling more energetic.  And more importantly, they were developing new habits, good habits, habits I had gotten away from.

So that very next day, I ordered the products for Jay and me (supplements, good-for-you energy drinks, meal replacement shakes and the all important but awful herbal cleanse).

The 24-day Challenge looks basically like this:

• 10 days of cleanse – not fasting, but fruits, veggies, grilled non-fat chicken meats, no salt, no caffeine, no dairy and no bread – NO FUN
• 14 days of restoring your system and replenishing and boosting the good, working in to a normal diet
• 24 days of exercising 30 minutes a day (at least 5-6 times a week)
• 24 days of drinking 90-120 oz of water
• 24 days of learning how to eat and take care of your body again

We are on day 13.  I will not lie.  The first 10 days of the cleanse were A.W.F.U.L.  I kid you not, I cried twice because I was hungry.  Because I wanted food that tasted good.  But because of my “partner in crime,” Jason, I stuck to it.  We only cheated once with about a cup of non fat, sugar-free frozen yogurt.

But the real kicker is . . . I have NOT had coffee for 13 days.  I was a 4-6 cup a day coffee drinker and addicted to White Chocolate Mochas from Saxbys or Starbucks.

And I’m walking and doing pilates nearly every day (sometimes one, sometimes the other, sometimes both).  I’m sleeping better.  I’m waking up easier.  I feel the best that I have felt physically in a long, long time.

And, as of today, I’ve lost 13.2 lbs and lost a total of 10.5 inches (that’s measuring arms, hips, legs, etc).

But here’s my point.  We have to do this for those we love and for ourselves.  Gary Chapman in The 5 Love Languages talks about “filling up our love tank.”  And when the “tank” is empty, there is no love left to give.  It’s the same principle with us as moms, if our “tank” is empty, we have nothing left to give and we run on empty and we become tired, angry and bitter.

So, how do you fill up your tank?  Maybe your thing is not physical, like me.  Maybe you are in great shape.  Maybe you aren’t but your satisfied with where you are and it’s not what is keeping you from being the best you.  Maybe it’s just some “me time.”  Maybe it’s neglecting something you love to do or a hobby that you miss so much that you begin to be resentful of that passion lost.

What do you love?  To exercise, read, paint, write, shop, scrapbook, garden, decorate, craft, dance, play an instrument, sing, organize, fund raise . . . whatever it is . . . do it. Take care of you.  You will feel better.  You will love yourself more.  Your family will love you for it!

And after all, you deserve it!  You take care of others . . . so now, start taking care of you!

A friend recently told me to be PROUD of my progress because I have worked so hard . . . so here you go!

It’s Part of Him

Acceptance . . . there has been a lot of talk about acceptance in the DOC (Diabetes Online Community) lately.  It has troubled me.  It has even made me paranoid.  It has really made me sad because we are all fighting the same battle and really do on some level need each other.

But I’m not writing about that today.

I’m writing about a different acceptance.  Something that Ryan has accepted and I don’t think he even is consciously aware that he has.

Several weeks back, one of my besties, Jana, took Ethan to a Rangers game.  She LOVES baseball and the Rangers and got kickin’ tickets behind home plate and asked to take him.  He had a blast.

Well, the “Littles” (what I affectionately call Ryan and Aaron now graduating up from being the “Babies”), were not so happy.  They LOVE Ethan and it was a Friday night and they are accustomed to Friday nights being movie night in our house.  So, Jay and I decided to take them to GattiTown, a Chuck E. Cheese-like place.  I hate to go to places like that.  The ONLY one I remotely have ever enjoyed is Incredible Pizza.  But moving on . . .

While we were there, there was an older gentleman sitting outside the game room doing caricatures.  Jason and I had one done waaaaaaaayyyyyyy back before the boys were even a thought.  Jason loves them.  So, he wanted to have one done for Ryan and Aaron.

With the Dallas Mavericks winning the NBA Championship, the boys have gone Mavs crazy.  So they decided they wanted their bobble heads to be on the body of a Mavs player.  Aaron wanted #41 on his jersey, Dirk Nowitzki.  Here’s Aaron:

The hair and the eyes are great. He pudgy cheeks don't do him justice though

Ryan was up next.  He decided he wanted #31 on his jersey, Jason Terry.  He has come to like Terry because of his nickname “JET” (Jason Eugene Terry).  But Ryan likes his name because he has heard the story of the doctor who delivered Ryan said we should call him “Jet” because he was born on 7-27.  :)  Anyway, here is Ryan:

Do you notice anything about Ryan’s caricature?  Anything at all?

Notice his right hand.  Ryan wears a blue jelly snap on medical bracelet that appropriately says “Diabetes.”  As he was telling me what he wanted the artist to draw, he specifically asked,

Playing in our first good rain in forever. Notice his bracelet on the right hand (and his pod under the blue and black band on his left arm).

“Can he draw me with my diabetes bracelet on?”

“I’m sure he can,” I said calmly fighting back the tears.

“Good,” he said, “I always wear it.”

Jason walked up and I told him what Ryan had asked for.  I turned my back to Ryan unable to hold back the tears.   Jason attempting to comfort said he thought it was a good thing that he wanted to include it.  It’s a part of who he is and he’s accepting that.  AND . . . he’s not ashamed or embarrassed of it either.

It was a bittersweet moment for me.  Even now, writing it, there is a little lump in my throat.

But it is what it is and he’s accepted it.  I can’t change it, so what more could I ask for?

Bragging Rights

Sometimes we as parents just need to take the time and brag about our kiddos.

And as a blogger, I have a great venue . . . so here goes . . .

Last week, I got an email that Ryan was going to receive an award on Friday.  The “Sunshine Award” for all of 2nd Grade, not just his class.

When I walked in the building on Friday, his Kindergarten teacher was in the office while Ryan was dropping off his d-stuff at the nurses desk.  She stopped me and said, “I love Ryan.  Every time he sees me, he sneaks a hug.  I think we have a special relationship.”  It was all I could do not to cry.  And I reminded her that they, she and Ryan, do have a special relationship.  She made him feel safe at school when he was dx’d (mid-year his kindergarten year).

When the teacher, Aaron’s kindergarten teacher last year, was announcing the 2nd grade “Sunshine Award” she said that “this second grader is special to me because every time he sees me, he gives me a hug.”

And then when Ryan was called, over 500 students, I could see my little Aaron’s arms go straight in the air and his lips yelling, “That’s my brother!”

He just looks like sunshine, doesn't he?

Ryan jumped up and walked right up on the stage, took his certificate and held it up proudly.  He scanned in the back for me and Ethan, then smiled very big and waved.

And my heart about burst.

I do not love Ryan more than Ethan and Aaron.  Not one bit.  But sometimes when I see him and his successes, no matter how small, and his happiness, I can’t help but be overwhelmed with thankfulness that he is the child he is.  That he does not let the hard of d, steal his joy.

Ethan, when we got back in the truck to take him to school said, “I’m so happy for Ryan, Mom.  He so deserves stuff like that.”

How could I not be proud of these boys?

Oh, and one last thing, Ryan was voted President of his class on Monday too.