DIABETES BLOG ENTRY 7: My Favorite Things/Blog Week….In Song of Course

My Favorite thingsDay 7 for Karen Graffeo’s (who blogs and hosts at Bittersweet Diabetes) Diabetes Blog Week. The fifth annual Diabetes Blog Week started Monday and today is the last day.  Congratulations on a simple idea that grows each year. Today is our favorite things about this week.  So with apologies to Rogers and Hammerstein (and surely Julie Andrews as well); to the tune of “My Favorite Things” here is just a tiny retrospective of this week, Happy Fifth Anniversary Blog Week Bloggers and thanks Karen for the opportunity.

My Favorite Things
Stories of events, galas, great stories, and joggers
A week put aside to hear from the bloggers
Stories of kids being wonderful queens and great kings
These are a few of my favorite things

T1 Ramblings and Dboy and Ribbon
Also we heard from an American in Dublin
Alive with Injections, medic bracelets and rings
These are a few of my favorite things

Probably Rachel, Rolling in D, were a start
Diabetesaliciusness, TuDiabetes, and my Diabetic Heart
All telling stories this week moving to spring
These are a few of my favorite things

When the D bites, when the D stings
When I’m feeling sad
I simply remember my favorite blogs
And then I don’t feel so bad

A Sweet Life, Vickis’s Notebook, gladly they’ll share
T1 International, and Insulin with My Sugar Bear
And reading RfamHere’s Ramblings
These are all my favorite things

Diabetic Diary, My Superhero and D
Pincushions, and Sparkles, and Carbs will all be
Manny bloggers more who flew with their wings
These are a few of my favorite things

So now the week’s all over and done
hundred’s of writings, some written, some sung,
So thanks are in store for all and Ms. Graffeo
For sharing things all, things we should know

When the D bites, when the D stings
When I’m feeling sad
I simply remember my favorite blogs
And then I don’t feel so bad

I simply remember my favorite blogs
And then I don’t feeeeeeeeeeel so baaaaaaaaad.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

DIABETES WEEK ENTRY 6: Diabetes through Pictures

cameraDay 6 for Karen Graffeo’s (who blogs and hosts at Bittersweet Diabetes) Diabetes Blog Week. The fifth annual Diabetes Blog Week started Monday and will take place through May 18th. Today is diabetes through pictures. Just a few that have meant so much. Take a look.  Know this: It is about LIVING with diabetes.


I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

DIABETES BLOG WEEK ENTRY 5: Tips to Help Out–Wake Us Up, Halloween, Sleepovers and More!!!!!

 

Hot tipsDay 5 for Karen Graffeo’s (who blogs and hosts at Bittersweet Diabetes) Diabetes Blog Week. The fifth annual Diabetes Blog Week started Monday and will take place through May 18th.  Today is about the tricks of the trade; and we have a few.  Things that we have done that, perhaps, others may not have thought of which helps a little.

WAKE US UP (CGM Needed): I guess the biggest item is to help us wake up.  The old marbles in the metal bowl have been around for a while.  You know, you place your CGM sensor in the bowl and when you reach that threshold where it vibrates….the marbles rattle around and you wake up.  But here is something many are trying AND liking.  I was told about iSeismometer, which is an App that warns you when an earthquake is coming.   Download the App on your phone (yes it is free), place the phone on the proper nightstand (you probably want to make sure the phone is plugged in), and place your CGM on the cell phone.  When one hits that threshold of going low, it vibrates, and the phone thinks it is an earthquake, and an alarm will ring that can be made loud enough to wake up the house.  Try it; many have.

TESTS: It never made sense to me to be behind in dealing with blood tests.  Have your blood tests about a month before your next doctor’s visit so you are discussing current trends and results when you see him/her.  It is better to discuss what is happening now, and not what was 2 1/2 months ago; don’t you think?

BEDWETTING: Many times, after diagnosis, bedwetting begins again.  Of course from those unpredictable highs, not much can be done but if it is a matter of ‘retraining’ your child try this:  Buy products that turn your toilet water blue when flushed.  (In most cases) show your child that peeing (with its yellow color) can turn the potty water green.  You will be surprised how much ‘fun’ they think it is….anything that works, right?

THOSE PARTIES AT SCHOOL: This has changed over the years with the use of insulin pumps etc., but the stress over these ‘parties’ is still alive today.   Years ago Jill crafted a letter that she sent to each parent about Kaitlyn having diabetes.  She not only used it every year but a following has occurred with the letter and it has been included in books and thousands of people have utilized it over the years.  It is a simple letter that tells a little about what diabetes is, that a child cannot ‘catch it’, and some ideas to do for birthday parties at school or otherwise.  If anyone wants a copy (and it surely needs to be updated), shoot me an email and I will send it to you.

I DON’T HAVE THE RESOURCES TO MAKE A DIFFERENCE: Hogwash.  Anyone can do something to make a difference and you will feel much better about all of this ‘diabetes stuff’ if you get involved.  In as much as donations help many organizations do great things, if you do not have it leads to feeling like one cannot be involved.  WRONG-WRONG-WRONG.  All organizations need volunteers–call up anyone and they will put you to work.  Here is another idea you can do; go to Get Diabetes Right (hit like so you can be updated as things are added–already over 4000 people like it) on Facebook.  There you will find an assortment of important information that you can print out and hang around your neighborhood; or even email them to school nurses, pediatricians, and family physicians and ASK THEM to print out and hang in their office.  Very simple but you will have an impact.

I ‘GOTTA’ GET OUT OF HERE:  I have never understood the comment from parents that they have not left their child’s side since they were diagnosed with diabetes.  They will tell you that they have not gone out anywhere, have not been out with their spouse, and they just cannot leave their child alone.  My question is always the same; “Why not?”  There have been an entire list of people who have lived incredible lives EVEN AFTER diabetes became the new normal.  It’s YOUR choice.  Now, it comes down to how you get there and it is here that I want to suggest a few things. Do not plan on being away for 3 hours the first time, that will come.  Go around the block.  Take a ten minute ride.  Just get out to begin with, and slowly increase the time until you feel comfortable.  It is not healthy for you and/or your family if you are the 100% care taker for your child (99% will do).  This goes for single parents also.  Get some time out of the house——so many before you have done it, now you figure a way to do it also.  Find a teenager who has diabetes to help out (ask your local diabetes foundation chapter if they know of anyone).  Paying a few bucks to keep your sanity is worth every nickel.

SLEEPOVERS: The best way to get this started—-be the one who has the sleepover first.  See what happens.  Do not have anxiety about your child going to one—-when the time comes; be first to have one and build on it.  You will be more comfortable with diabetes at someone else’s house when you see how diabetes reacts at your own…..make sense?

HALLOWEEN: Collect the candy, leaving a little bit of course, and leave outside for the GREAT PUMPKIN to take the candy and leave a real special toy or toys.

Many people have great tips that they have utilized over the years.  Sometimes the best things, are the ones you work through on your own.  The best experts share their experience, there is no better teacher.  Learn from others.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

DIABETES BLOG WEEK ENTRY 4: A Word from an ‘Often-Missed’ Diabetes Tool.

Switch 1Day 4 for Karen Graffeo’s (who blogs and hosts at Bittersweet Diabetes) Diabetes Blog Week. The fifth annual Diabetes Blog Week started Monday and will take place through May 18th.  We, as writers this week, are given the opportunity to substitute the daily topic with another suggestion on the list.  Today I will use that option and write a short story personifying a diabetes tool used on a daily basis.  I am asked to give it a personality and a name and let it speak through me. What would it be happy about, upset about, mad about, etc.?

Dear Household,
It’s me. “Flip”.
Bet you didn’t know I had a name, did you?  But I do, it’s Flip. (Don’t laugh, you named your fish ‘Rocky’ for heaven’s sake.  Rocky?  really—for a fish?)

I observe a lot in my position.  I mean, hung on a wall like this, there’s not much more to do than observe, is there?   I just wanted you to know that I feel a little left out of all of this diabetes credit and stuff.   I mean people read all of the time that they are so appreciative of the wonderful diabetes management tools, right?

I mean, syringes, insulin pumps, CGMs, and insulin pumps (do not even get me started on them…..they think THAT LITTLE light they have to see in the dark places them on the same level with me?) get all the credit for all of the wonderful things they do?

Well what about me?  I should be included in that list and, quite honestly, I feel a little left out.  Taken for granted even.

I know in an instant exactly what is going on by the way you hit my switch.  Like two nights ago, you did not like the way your daughter sounded at 2:00 am, and when her blood sugar was low you slapped me so hard as you ran out of the room, it actual hurt—-you wear a ring ya’ know.  Hellllo!!!!  Did I say anything?  Nope, gave you all the light you needed.

How about when your son thought it was okay to use his hands to turn on the light after cleaning the fish tank.  I mean; REALLY!!!!!  Wash your hand first……Jeeeeez Louiseeee.  (I won’t even discuss some of the bathroom trips).

I know we had some tough times too.  Like the time your child was sleeping so soundly and you thought by trying to turn on the light very slowly that it would give off less light, hey it’s not my fault your kid woke up from all the light…….I told you to buy my cousin, “Dim”–you could adjust it as needed.   But noooooooo, do it your way.  So all of the light—–not my fault.

So here is the deal, I think it’s about time that you admit that I’m just as important as everything else in your diabetes tool box.  Because quite frankly, without me, you’d be nowhere but in the dark.

Love always,
Flip.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

DIABETES BLOG WEEK ENTRY 3: What Gets Us Down….ah, um-Not so Fast!

snoopy-red-baron2_mozWell today is Day 3 for Karen Graffeo’s (who blogs and hosts at Bittersweet Diabetes) Diabetes Blog Week. The fifth annual Diabetes Blog Week started Monday and will take place through May 18th.  Day 3: What Brings Me Down………but wait (he says).

This sounds like it could be a very depressing topic doesn’t it?  I’m sure we can all create a list a mile long.  So let’s try to spin what we can do to address some of the things that get us down and how to pull up and out of them.  Those who know me know how much I LOVE Snoopy.  Every time Snoopy gets shot-up by the Red Baron, he is able to pull up and out.  He finds a way to land.  He finds a way to move on.  And he works at being cool. Let’s do the same.

Long, Long night.  Checking-rechecking.–It is a these times more than any other I become grateful that they are alive.  They are fighting.  Even while sleeping; they are fighting.  Rocky?  He fought the good fight and every time an ‘all nighter’ occurs, I know they are fighting.  Fighting is alive.  I will fight right along side them.

The tears when they feel they are so different–Ahhhhhhh–opportunity.  Yes, I said opportunity.  We get to remind our kids more than most how unique they are, they get a little tougher than others, and they realize how to deal with ‘the world’ probably much quicker than those……..well who are not so unique.  Seize this opportunity and embrace how you are given the opportunity to empower your kids.

The thoughts of how unfair –it sure is.  Done yet?  That is about all I give it.  You have two choices, it owns you or you own it.  I have said it a million times and I have reminded myself a million times.  There are things we cannot control when it comes to diabetes, we all know them; what we can do is control what we can control and that is the attitude in which we face it. We know people (and so do you) who have a life of which we would never trade.  What a life of hell they have faced because of the ‘unfairness’ of life.  And yet, people gravitate to their spirit, their humor, their appreciation of life…..ask yourself; “Why is that?”  Gripe or groove.  I’ll hang with the grooves, thank you.

Today SUCKS!–Yup!  And tomorrow will come.  I know so many people who have diabetes and their spirit amazes me.  At the top of this list is my daughter, Kaitlyn.  She has bad days and sometimes they can be real doozies, but I often marvel at how she handles them.  Every day is a gift for Kaitlyn and watching her open it each day gives me enormous power to face whatever it is that lays before me.  Tomorrow the sun will rise—-bask in it or let it burn you; the CHOICE IS ALWAYS ours.

Poor me!!!!—when this thought happens, I find something to sink my teeth into.  I help someone.  I do something.  You too, do something.  Sometimes seeming insignificant; but as long as it is not something for yourself and helping someone else; you will realize just how much power you have over this feeling.

Will these work all of the time?  Of course not.  But let’s take another look at Snoopy.  Ever wonder why so many people in that comic strip want to just ‘hang with him’; because he is so up, that’s why.  Life is cool.  But Snoopy makes it that way, he grabs ‘LIVING’.  I get it, we do not live in a comic strip but I would rather be the person who works at looking toward the positive and grabbing life for everything good.  Know this, it takes work.  But it’s worth it.  It’s easy to be the person who is always down and no matter what happens in life, it’s always so down.

Good grief.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

DIABETES BLOG WEEK ENTRY 2: Poetry: The Loudest Thing in the House

Clock tickingOnce again, Karen Graffeo, who blogs at Bittersweet Diabetes is hosting Diabetes Blog Week. The fifth annual Diabetes Blog Week started yesterday and will take place through May 18th.  Day 2: Today’s topic: Poetry.

The Loudest Thing in the House

Clock ticks.

I am alone.  Too low to sleep comfortable.  Will recheck in a few.

Clock ticks.

Seems louder than when I first sat down, seems slower too.  No matter what I do or when, I seem to find myself in this chair at this hour often.

Clock ticks.

It’s always too quiet.  It’s a deafening quiet; it’s a parent’s quiet.

Clock ticks.

I read the newspaper, which I have read twice already.  Passing the time to enter her room again.

Clock ticks.

I recheck her blood sugar, at 145 I can go back to sleep.  I sit on the bed’s edge. I stare at her face. I am tired.

Clock ticks.

She sleeps soundly.  On one hand she does so well.  She is getting so big.  Childhood passes quickly.

Clock ticks.

I push the hair back from her face.  She has battled this for some time.  She seems to be winning.

Clock ticks.

I make my way back to my bed, my head softly sinks into my pillow.  My last thought is always the same.  A cure.  There is a cure.  We must find it.

Clock ticks.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

DIABETES BLOG WEEK-ENTRY 1: What is My Passion? I’m Glad You Asked!!!!

Blog week 2014Once again, Karen Graffeo, who blogs at Bittersweet Diabetes is hosting Diabetes Blog Week. The fifth annual Diabetes Blog Week will take place from May 12th through May 18th.  So Here I am……willing and able.   Today’s topic: What am I passionate about?

As many know, I have many different passions when it comes to diabetes.  In no specific order; Getting Diabetes Right, recognizing a diabetes diagnosis, advocacy, kids and diabetes, diabetes education, diabetes in underserved areas of the United States, better management, and a cure.

Although, as stated, there is no specific order to these passions; and those who know me know these passions to be true—by far my leading passion is for a cure.  For when the cure comes, it negates everything else.

Lately, though, I feel as if the word cure is getting a bad rap.  I have been told for over 21 years that the cure was around the corner from many different entities; and so have many others. But it seems like, lately, the cure is being touted by many people as just too far off and will just never arrive.  This troubles me.

What is the message we send to our kids if we say the cure just will not come; what is the message we tell ourselves.  More than that, the funding for T1 Research is a well which is drying up with each year that goes by and in as much as I think we need to be realistic about a cure, saying it is not going to happen, to me, is just not true.  And do not misunderstand me; management tools and the research and development of such tools MUST continue.  The NOW is extremely crucial and I am not saying otherwise.

I think the researchers who are pursuing a cure for T1 Diabetes should be challenged at the principles they ‘serve-up’ to us.  Challenged.  But here is what I see happening; the attitude that only things in human clinical trials are worthy to be watched or funded is a naïve statement at best.  The magnitude it takes to get a project from concept to a patient is huge and it is easy for people to cross their arms, sit back, and say that only those projects already in human clinical trials should be funded but the truth is, if everyone is only waiting for ‘that stage’ I can tell you with a great deal of confidence that it is only a matter of years before research stops altogether.  It’s easy to jump on board in the final stage.

THAT is easy to do.

Every researcher wants to be in human clinical trials, but the road to get to that point is never the same.

My point here is a simple one, if there are researchers, reputable researchers with a track record (and trust me they are out there), who have theories and ideas that are worthy of pursuit, fund them.  But throwing up our hands and saying, “Nope, can’t happen!” is an attitude that needs to change; that attitude is just not within my DNA.
I get it.  Believe me when I say I get it.  I know the frustrations of seeing things not happen and being told one thing when none of it is true; but being an employee associated with a research center with the reputation of the DRI I also know the passions and brain power and the differences of research that is moving forward and the research that is not.  If it is not moving forward, it must be moved out.

I can not change anyone’s mind about how they feel about a cure, and where we stand.  But for me, that hope is why I get up every day.  When Kaitlyn was diagnosed, I knew that I did not have the ‘brain-power’ or the skills to find a cure for diabetes.  I needed to support those that COULD get us there.  I searched, and continually search, where I think it best for me to spend my energy for me to fulfill the promise I gave to my daughter, and later my son; by those who DO HAVE the brain power to get us there.

My promise is my breath; and I promised my kids that no stone would be left unturned until we get there.  Although crucially important, I did not promise my kids I would do all I could to find them better management tools as the ultimate goal.  I do not care how politically incorrect it may seem, how unpopular it may seem, how ‘right’ other paths may seem, or how easy anything else pursuing may seem; but to my kids, I promised, I would not stop until a cure is found.  Not a cure pursued when I can, if I can, at certain times and not at others, or during a time when SOMETHING looks good.  No.  I am in this to push, shove, fight, pursue, fund, and convince anyone else that giving our all one hundred percent is the only way to find something that we cannot yet see; that we cannot yet grasp.

A cure.

And to me, nothing short of that is acceptable.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

BLOG WEEK DAY 5 PART 2: SWAPPING: The Absolute Best Answer of the Day

number 1Today we were supposed to write about swapping diseases.  Many people had fabulous comments about this topic but the absolute best answer came from my Godson/Nephew (I AM SOOOOO PROUD) speaking about his son who has Cystic Fibrosis.

I am a tad ashamed I did not think of it first…..it IS the perfect answer from any parent who has a child with ANY disease.

Paul Mendola Jr. writes:
The only thing that I would swap with regards to my son’s CF…is for me to take it myself!!

AMEN!!!!!

…………..and that is the absolute best answer I saw today.   Thank you Paulie (I can still call him that).  I love you.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

BLOG WEEK ENTRY 5: SERIOUSLY????? I Don’t Think So.

Mary PoppinsThis week is blog week and we, the DOC Bloggers, have all been given a title for each day of the week and asked to write on this topic.the fourth entry into blog week we are asked to address the following title: FREAKY FRIDAY.  If you could switch chronic disease, which one would you choose to deal with instead of diabetes (and has participation in the DOC affected how I treat others with other medical conditions). 

I’m not so sure where this question came from but it had me scratching my head.  But I agreed to answer the questions all week so I will do as I promised.  To actually wish my children had a chronic disease other than diabetes would suggest (to me anyway) that I would think one chronic disease is better, easier, or in some way placing our household in a better position than having diabetes.

I can’t do that.  THAT is not the case.

Well maybe I can, there might be one.  In the movie Mary Poppins Uncle Albert (Famous character actor Ed Wynn) and Bert (DIck Van Dyke) suffer with uncontrollable, chronic, laughter which makes them levitate.  The harder they laugh, the higher they go.  The idea is that laughter lightens the mood.  That is the ONLY disease I would switch with diabetes.  But uncontrollable laughter is not a real chronic disease and I am taking ‘artistic license’ here  because there is no real chronic disease we would ever consider. 

We do with what we have and go forward.

I have never once compared a disease to diabetes, nor wished we had ‘only that’ to deal with instead of diabetes, as I have heard others do so since our first child was diagnosed and quite frankly we just do not agree with it.  Any family dealing with ANYTHING has it tougher than those that do not.  Period.

My involvement with the DOC has nothing to do with how we treat others affected with other medical conditions either.  It has made me more aware, but we are at this long before the DOC was in place and our compassion comes from ‘life’ dealing with people who we both know and love; and we did not need any help in this area on how we treat others.

Let me ask you a question.  What do you think of today’s question; how would you have answered it?  Please reply to this blog and let us all know what you think.  I thought about it for a long time before I answered, but what do I know?  This blog is just me and I will always defer to others, who know so much more than I so please chime in today; how would you have answered?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

BLOG WEEK ENTRY 4: In Death She Taught Us Our Greatest Accomplishment

SyringesThis week is blog week and we, the DOC Bloggers, have all been given a title for each day of the week and asked to write on this topic.the fourth entry into blog week we are asked to address the following title: What is our greatest accomplishment big or small. 

As in most things in this journey of ours,  the accomplishment I consider to be one of the largest had little to do with me, but it did have to do with us being educated and listening.

POWER.  The biggest amount of power we can give our kids with diabetes is the ability to own it.  To care for themselves.  To take care of their diabetes.  The more they do, the more they ‘own’; the better for them in the long run.

When Kaitlyn was first diagnosed, we were under the absolute belief that she was going to have this for the rest of her life so we figured we would DO AS MUCH AS POSSIBLE for as long as we could.  It was the least we could; right?   Read on.

Mindy entered our lives.

Mindy was as smart as she was beautiful.  She had type 1 for years, was married, had a wonderful daughter and she was one of the strongest women I have ever met.  She would tell us a story that would change our lives.

When we first started on this journey and met Mindy she told me that I seemed like a very dedicated dad and that I was driven to change this world of diabetes.

I informed her that I was definitely on that roadway. 

Mindy said, “start with your daughter.  Tom I am going to tell you something and you will get angry but know this as truth.  It is not your diabetes, give it back to Kaitlyn.”

She was correct……I got angry.  Of course it was as much ours as it was hers.  What is she talking about?  She continued.

“Hear me out.  I was diagnosed with diabetes at a very early age.  My parents did everything for me.  EVERYTHING.  Age 9-10-11-12-13.  I never did a thing; NOT A THING.  They followed me, they measured, they tested, and they injected.  I was home one night waiting for them because I was hungry (Remember that we are speaking of diabetes in the 60’s-70’s here).

The door bell rang and my grandmother answered the door (even she was not trained on what to do with my diabetes).  I remember the policeman standing there.  My parents were killed in an automobile accident.  And to be honest, I was unsure if I was more angry that they were dead or that they left me with everything AND I KNEW NOTHING.  SO I can tell you, give Kaitlyn her diabetes back.  You will be glad you did.”

We started that day.  It became the greatest accomplishment because Kaitlyn took complete control as soon as we knew she was able.  By age 7 she was giving herself her own shots.  It was a painful but crucial lesson to learn.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’