Who Knew?

A couple of weeks ago I attended Events of the Heart.  It is put on by one of our local hospitals and it is designed to get the word out about women and heart disease and how important it is for woman to be aware of our hearts and what we need to do to keep them healthy.  It was going to be a night of education as well as "Angina Monologues" plus food and wine.  You can read more about the cause here.  I was looking forward to what I thought was going to be a great evening out with some lovely ladies.


I met up with my friend at her house and away we went.  The event was located at the local theater.  The cocktail hour was held outside in the courtyard and it was a gorgeous evening.  I even wore heels!  The chimes rang and we headed in to our seats.


The lights dimmed and the host of the evening and initial speaker took the podium.  She began speaking about women and heart disease and how important this evening was.  Then she mentioned diabetes.  My ears pricked up.  She talked about the future statistics and how the number of cases of diabetes is increasing.  Then she said it.  "Diabetes is preventable."  I froze.  I thought to myself she didn't really mean that right? And she said it again.  "Diabetes is 100% preventable."


I was in shock.  Part of me wanted to walk out but I didn't I stayed and I tried to focus the rest of the evening.  It wasn't easy.  The performances were good and the cardiac surgeon was outstanding.  She did a Top 10 List of things to know about heart disease and she did a great job (and she never said diabetes was preventable).  It was a hard stuff to listen to though because as a mom of a child with diabetes I know the risks.  I know everyday when her number is high that that is putting her at more risk for complications later in life.  And this night was statistic after statistic of risk factors and concerns.  I felt horrible by the time I got home.


My poor husband got an earful when I got home and it wasn't very calm or collected.  I was mad.  Here I had been at an event sponsored by a hospital and they were perpetuating diabetes stereotypes!  Would they like to look my 5 year old daughter in the eye and explain how she could have prevented this?  The next morning I sent an email to the hospital's Healthcare Foundation asking to speak to someone regarding the event.  I wanted to speak directly to the woman who made the incorrect comments but I had no way of reaching her.  The Executive Vice President from the Foundation returned my email and said she would love to speak to me.  When I called her back, I was calm and collected.  I explained who I was, who my daughter was and how the things said that night were so harmful to her and countless others who live everyday with Type 1 diabetes.  I said that as a medical institution they have a responsibility to make sure accurate information is being delivered.  She was very kind and receptive.  She also mentioned that she would speak to the woman that made the comments and express my concerns.


Yesterday I received a second call from the Vice President saying she spoke to the speaker who was very sorry for what she had said and that she would love to be able to speak directly to me if I was comfortable with that.  I told her I was completely comfortable with that.  I hope to hear from her soon and I will keep you updated if I do.


So I may have failed horribly at writing a blog post everyday but it turns out I am an advocate!  

Daily Schedule

So I have been kind of slacking off on the daily writing challenge but here is my entry for today's challenge which is to write down your daily schedule.


6:30 am Wake up check BG
7:30 am weigh and measure breakfast, snack & lunch & check BG
8:00 am calculate carbs eaten administer insulin with pump
8:30 am take kids to school
10:30 am find out BG from school and oversee insulin given for morning snack
12:00 pm find out BG from school
12:30 pm calculate carbs eaten and oversee insulin for lunch
1:50 pm pick up from school
3:30 pm check BG weigh and measure snack administer insulin
5:30 pm prepare dinner counting carbs for any/all ingredients
6:30 pm weigh & measure dinner & check BG
7:00 pm calculate carbs & administer insulin
10:00 pm check BG & administer insulin or treat low if needed (if low recheck every 15 mins until number is in range)
2:00 am check BG & administer insulin or treat low if needed (if low recheck every 15 mins until number is in range) 


**check BG at any time as needed for possible lows, activity or just because.


This is just my diabetes schedule.  It doesn't account for laundry, homework, grocery shopping or t-ball.  

Two sentence story

Once upon a time there was a girl who dreamed of being a princess and a pet trainer.  And although she may not be either of those, I thank God every day for modern medicine so that she can grow up and be whatever she wants to be.

A poem of lies

Fast food caused this
but here's the good news
Diabetes is reversible
Just lace up your shoes!

Get some exercise
And eat your food raw
Add a dash of cinnamon
No go, tell your Ma.

No more glucose checks
and she can sleep through the night
Just follow these instructions friends
and it will all be all right.

(This was written as part of the Health Activist Writer Monthly Challenge to write a poem where every line is a lie or misconception about your disease).

A piece of the sky broke off

Today's challenge is to open a book and use the first line that you read as your title and then write based on that title.  I had Where the Sidewalk Ends in front of me.

Julia is sick and I hate it.  Someone asked me today if diabetes causes a problem when she is sick.  Oh My Gosh YES!  I already check her blood sugar numbers all the time but when she is sick, I test more.  We were checking her multiple times over night last night because she coughed so much she threw up and you remember the fun that that is.

Bubba took her to the pediatrician and it turns out she has a bronchial infection.  So she is back on antibiotic and now has crazy numbers because her body is fighting the infection or she is on antibiotic or the moon is full.  Who knows.

Fragility

Today's challenge is to find an image that speaks to you and free write.


This image is beautiful to me but it is also so fragile and the fragility is what speaks to me right now.  I heard through the DOC about a child dying in her sleep.  She had Type 1 Diabetes.

Life is so fragile to begin with and as a parent of a child with diabetes that fragility is something we think about every day. It is called dead in bed syndrome and it scares me. Children go to bed with sugars in range and at some point in the night something goes wrong and they don't wake up. I first heard of this when I first found the DOC and I couldn't even read the postings. Now I can read them and when I do, my heart breaks. I don't know these people personally but I share their pain. The day to day dealings are hard enough without the threat of death looming overhead. I have had people ask me how long will we keep having to wake up and check Julia at night and my answer is always I'd rather wake up than have her not wake up. 

Please pray tonight for the families who have lost their children and for the rest of us who pray every night that it won't happen to our child. 

Post Secret

Pumping so far...

    


     Things are going smoothly and we are so happy.  Last Monday we started the pump on a saline trial.  Basically this means we started on the pump but instead of insulin,  we had saline in the pump.  At first I was a little bummed to be doing the saline trial because I just wanted to get going but once it started I was glad it happened the way it did.  Having the saline gave us the chance to get familiar with using the pump before it was active with insulin.  


     The other great part about the trial was that Bubba got to wear a pump too.  The doctor's office had a spare pump for the training and since there were no other trainings until we were due back Thursday morning, we had two pumps to play with.  Julia liked seeing her blood sugar number pop up on her Dad's pump.


     We went back to the doctor Thursday morning and did our first site change and switched out the saline with insulin.  We were live with insulin on board!  They sent us home to have breakfast and come back in the afternoon for more training and to check in with the doctor.  I probably asked Julia a million times how she was feeling that day.  

     Since leaving the doctor we have not had any serious issues.  We are doing a lot of testing of her blood sugar (every 2 hours) to make sure we have all of her rates and ratios correct.  Her favorite part is deciding which pump belt she is going to wear.  So far "cupcake" is her favorite.  Today she has it in her pocket (so she can be like Eric).  

Thank you Too Sweet Boutique!

     The best part is she has not had a shot since Thursday morning (she was high before we left for the doctor). Now when she eats, I enter her blood sugar and the carbs she has eaten into the bolus wizard.  It calculates what her insulin dose and delivers it to her.  As I was giving her one of her first doses with the pump, she looked at me with a huge smile and said "That's it?"  If that doesn't make it all worth it I don't know what else would.  

     She still gets an injection when we do the site change but that is every third day which to me (and Julia too) is a vast improvement on at least three times a day.  In fact, we did a site change this morning and have had no issues so far.  I feel like I am tempting fate with such a great report but I can't help it.  We are happy pumpers for sure! 

I have a question or six

When does the worry stop?
When can we relax?
How can you call this "normal"?
Will this ever be off our backs?


Can't we work together?
When will we have a cure?
To be completely honest,
it is all I want for her.

Why I Blog

The reason I started blogging was in the hopes of being able to still be socially acceptable.  After Julia's diagnosis, I needed an outlet.  Everywhere I went and all I could talk about was diabetes and how Julia was doing.  I even bombarded one friend in the parking lot of the mall.  So I knew if I didn't find somewhere else to let all my thoughts out I would end up without any friends FAST! Blogging has given me the outlet I needed.  It gives me a way to process my feelings good and bad.  


The other thing I am grateful for is all the other D Mamas I have found.  Reading their blogs has given me so much comfort.  Even though we don't "know" each other, I feel like I have found so many long lost friends.  I read posts that I identify with and that break my heart.  But I also read posts that bring me joy for kids and families I have never met.  I no longer feel so alone in the crazy mixed up diabetes world.  




(sorry it was late, crazy numbers last night)

Haiku

Knott's Berry Farm day
First amusement park since "D"
Great day, "D" and all

Blood Sugar check nerves
Too high, too low, up and down
Striving for balance

Good sleep I miss you
Up on and off all night long
I'll do it for her

Fake a Cure?

It's day four of the Health Activist Writer’s Month Challenge (HAWMC), and organizers gave us this challenge today: Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it.  Can't find one?  Write your own.


This morning, I got up and googled holistic diabetes cure and unconventional diabetes cure to see what I could come up with and see how it inspired me.  It didn't inspire me it hurt.  


There is nothing I want more than a cure and right now there is no cure.  I cannot write a a funny or cute post about a crazy or silly cure.  I want a real cure.  


My daughter deserves a cure.  She shouldn't be getting excited about getting her pump and wearing her pump belts.  She should be excited about playing softball and relaxing over Spring Break.  


Maybe I am tired and maybe this post is a cop-out but it is how I feel.  

Yahoo Questions

Yahoo Answers Post: Pretend you are writing a question about your condition - it can be as silly/humorous as you want. Now answer it. (Remember: Your answer can be just as silly.)

So after looking at Yahoo! Answers to see what the questions and answers looked like, I understand why the prompt says it can be silly/humorous.  There are some strange people in this world who ask some strange questions!

Q:  My friend's 15 year old daughter was just diagnosed with type 1 diabetes.  She seems very concerned.  I am not sure it is such a big deal.  Doesn't diabetes mean she just needs to lose some weight and watch what she eats?

A:  It's Unlikely that a 15 year old with a Healthy Weight would be diabetic.
My guess is that there is something SIGNIFICANT in (her) life... that (she) should be worrying about... so (she's) looking for a distraction.***

A:  Type 1 Diabetes is very serious and requires 24/7 care.  Your friend's daughter's pancreas no longer produces insulin which everyone needs to live.  Please get some more info from a legitimate medical website http://www.diabetes.org/diabetes-basics/type-1/  Your friend is right to be concerned and she is going to need your support.  

***this was an actual answer that I found on yahoo! questions relating to type 1 diabetes

Am I Unctuous?

unctuous \ UNGK-choo-us \ , adjective;
1. Of the nature or quality of an unguent or ointment; fatty; oily; greasy.
2. Having a smooth, greasy feel, as certain minerals.
3. Insincerely or excessively suave or ingratiating in manner or speech; marked by a false or smug earnestness or agreeableness.

HAWMC Day 2 , take the word of the day from dictionary.com and relate it to your condition.  Imagine my excitement when I saw the word and definition for unctuous. See I am being unctuous already or maybe just sarcastic.  I am still trying to understand the definition.  So bear with me as I stretch the definition a little...

Since Julia was diagnosed, I have changed.  I am not the same person I used to be.  I am not the same friend I used to be.  Those who know me well, know that although I did not always keep in touch, I was always there.  Some how I have gotten even worse about keeping in touch.  And although I am there now, as often as I can be,  I always have nagging thoughts in the back of my head.  

Where is Julia?

What is her number?

Is she okay?

Does she need anything?

What if something is wrong?

So if I ever seem like I am insincere, or that I am not giving you my full attention, I apologize.  If I am being falsely agreeable, it is not my intention.  I want to be the old me and I am working on bringing her back.  I will not let diabetes define Julia and it will not define me either.  Please bear with me and please stay with me.  I am getting better and when it is really bad, let me know that I am being unctuous.  

      

Health Activist Writer's Month

I have joined the challenge to blog every day as a health activist.  You can read more about it here .  Today's challenge is to write an acrostic about my condition.  Just in case you were curious, an acrostic is a poem or other form of writing were the first letter of every line spells out a word or a message.  


Feeling helpless
It weighs on my heart
Needing a solution
Dealing without


Always trying to be hopeful


Creating a better future
Unrelenting in this wish
Real solutions, real answers
Eradicate Diabetes


I don't have a condition but my 5 year old daughter does.  Type 1 Diabetes is hard and it hurts not just physically but it hurts my heart.  We are doing everything we can for her and will continue to do so but I will not give up hope.  Having a pump will make her life easier.  Checking her blood sugar tells us how to keep her healthy.  But it is not a cure.  The one wish I have, my last thought every night before I fall asleep, is please, 

Find A Cure