Monday, January 24, 2011

A Sweet Life: Surviving the Diagnosis

A few weeks ago Jessica Apple the founder and editor-in-chief of A Sweet Life emailed me to tell me that she read our families story on my blog. (Me - Whaaaaat?  Really?  You read my blog?)

She also asked if I would be interested in writing a post about Nate's T1D diagnosis. Would I be interested ---- Ummm Yes! How many articles have I read and how many recipes have I made from A Sweet Life - - - A LOT!! I love the magazine style of the site and always find the articles informative and interesting. So, yes - I was thrilled!

As it turns out writing for someone else is much harder than I thought it would be. I really struggled finding the words and making them all come together.  I found that so strange since I am never at a loss for words over here at HWHAP.  It took a while but I was finally able to get something over to Jessica and guess what . . . it's the featured article today on A Sweet Life

If interested, please head over to A Sweet Life, read 'Surviving the Diagnosis' by yours truly, check out the recipes, featured bloggers and many, many informative articles. Jessica and her husband, Mike both have T1D and are truly inspiring.  




Saturday, January 22, 2011

A Few New Things ---

Thanks to Lora and Willie over at Our Family - - - we decided to try a new pod site for Nate last night --



So far - so good.  It's still on - we're having good numbers and he didn't mind the insertion (too much).
Today after bath-time we tried something else new . . . 


Notice anything different about Nate's attire?  Yea, yea, yea - I know - he never has pants on but -- anything else? Oh yea - he's rockin' the Lightening McQueen big boy underwear!!
Wish me luck!!

Thursday, January 20, 2011

Pre-Existing Conditions, Insurance and Health Care Reform

I have 2 children that are chronically ill.

If you know me or follow HWHAP even occasionally you know that my son, Nate has type1 diabetes and my daughter, Sophie has Crohn's.

In September of 2010 we reached the the end of our COBRA coverage and found ourselves without health insurance.  I worked for months prior to the expiration of our policy trying to find a company that would cover Nate and Sophie but found that with their pre-existing conditions we could not get coverage through a private policy.

In Texas we have the Texas Health Insurance Pool which is basically a state plan through BCBS that charges a premium to cover pre-existing conditions.  The monthly premium is determined by your zip code and which deductible you choose.  If you live in Texas and need to look up the rates you can check them out here.   Expensive!  

There are now different options through the federally run programs including a Pre-Existing Condition Insurance Plan where the rates are 1/2 the price of the State High Risk Pool.  But - - - you knew there was a but --- right?  To qualify for coverage you must have been uninsured for at least the last six months before you apply.  Yes, that rule applies to children too. Still, a very good option to have because many people have gone months and even years without coverage.  If you have a pre-existing condition and have been without insurance --- I encourage you to check this out!

I really don't know enough about the health care reform to preach it here on my blog.  I wish I had time to sit down and go through the plan page by page but you know - - - I haven't had a chance to get that done.  One thing I do know is that beginning in October of 2010 Health Insurance Companies can no longer deny a child with a pre-existing condition from a private policy if they are under the age of 19 and on a policy with a parent.

Sounds amazing right?

Just the answer we were looking for - right?

Once I found out about this part of the health care reform I started researching policies and filling out applications.  We decided to go with the same company we were on with COBRA since we were familiar with them and somewhat knew what they would cover.  We received a quote and I filled out the very lengthy application for the Houston Five and held my breath.  I received a call from a nurse that worked with the due diligence team and my 1st thought was that she would be asking questions and inquiring further about both Sophie and Nate.  I was shocked when she told me all of her questions would be about me and why I had a hysterectomy.  Not a single question or concern about Nate or Sophie.

A few days later I received word that we had been accepted with one small change. Sophie and Nate were indeed offered the opportunity to have private health insurance with one small catch --- their monthly premium would be 300% more expensive than originally quoted.  This put the monthly premium WAY over our budget and my head was only moments away from exploding!!  So, yes with the health care reform bill our children can get the coverage that they deserve but you have to pay a small fortune to get it. Still, at least there is an option.

We have been blessed beyond belief since losing our coverage back in September.  I was able to fill all of our supplies before we lost coverage and it seems like just as we get close to running out of supplies someone from the DOC has been kind enough to send us just the things we need just when we need them.  We've received test strips, lancets, lancing devices, insulin and even pods so that Nate can keep pumping.  I have been blown away by the generosity and kindness of these people that we have never even met (in person).  These people deserve way more than my thanks.  We look forward to paying it forward when we can.

Thank you so much!!!

I love the DOC!!!

So, for some good news . . .

After all of the research, applications, let downs, endless phone calls . . . the list goes on.
We finally have coverage for the children through the TX CHIP program. I will occasionally be chronicling our journey with CHIP here on HWHAP.  It's been interesting so far -- I will post more soon.  Let's just say I'm SO happy to have the supplies from our friends in the DOC because we haven't been approved for test strips, pods or pretty much anything except for insulin and even that was quite a little battle.

Thanks to Penny over at A Sweet Grace  for the suggestion to request a case manager.  We were assigned a case manager today and things are already looking SO MUCH BETTER!!

More soon - I promise.

Wednesday, January 12, 2011

Double A1c Test

A week or so ago Kelly over at Diabetesaliciousness™
posted about the Bayer A1C Now Self Check test and then Joanne texted to let me know that said testing kit was on sale at CVS for $9.99.  Woo-Hoo -- that's a $20 savings!  I bought 2 boxes!  Each box has 2 kits. What a deal.


I held on to the test for about a week and finally opened it up.  There are a lot of very specific directions -- I was glad that I'd read Kelly's post reassuring me that it really was easy to use!

I wanted to give it to Nate because we hadn't had insurance since September (more on that in my next post) so we haven't had his a1c checked since that time.  At last check his a1c was 7.2. 
For a about a week or so we were dealing with some serious highs. We pushed through and slowly made changes to his basal rates and we've now nearly doubled his basal rates.

By George, I think the honeymoon is over!!!

Nate's test was easy peasy - It is just a finger prick and he doesn't even blink an eye for those.  The 5 minutes actually flew by and I had his result before I even knew it.

7.5

It's a little higher but not nearly as bad as I was afraid it would be after all of those high blood sugars.  I feel confident that his new basals are working well (for now) and I'm hoping to get it down a bit before our Endo appointment next month.

The truth be told I didn't actually buy the test for Nate - the fact that there were 2 kits in the box was a BONUS!

I've been worried.  Concerned.  Stressed out.  Sad.  Unsure.

My sweet Sophie has been so thirsty.  So thirsty!   I know this thirst.

Then the peeing - I know this peeing.

She loves milk.  I wish you could hear her say milk - it's so cute.
Mommy, will you get me some more meeeeelk please?  It's so cute but heartbreaking at the same time.  Meeeelk.  Nate loved meeeelk.  Meeeelk is the reason I knew there was something wrong with Nate. I'd never seen any one person drink that much meeeelk in my life!

I've been testing her bg randomly and I've gotten numbers all over the place.

I was voicing my concerns to my friends, Jessica and Joanne when one of them mentioned that checking for ketones or doing the A1c test would probably give me some answers.

I didn't want to freak her out with the blood ketone meter - - - that sucker requires a lot of blood! So we did the pee strips and she LOVED it.  She wanted to pee on the little strip every time she had to 'go'. Each and every time we tested they never changed colors.  I was pretty convinced they were broken until I got sick and used one and whooooaaaa momma - RED!

Step 2 was the a1c test.  She hates having her bg checked so I waited until she went to sleep and . . . 1 . . . 2 . . . 3 . . . SHUNK!  The five minute wait on this one seemed to last forever!  Forever!

Finally it appeared ---

5.2



YES!!!

2 AWESOME GIVEAWAYS!




Just a reminder to everyone - - - - Please go visit . . .



asweetgrace

&





for two CARALOT SWEET GRACE giveaways!!

Monday, January 10, 2011

Thank You - Thank You - Thank You







I think this may be the 1st award I have ever won.  Is that sad?
I am SO FREAKING EXCITED PEOPLE!!
I honestly cannot thank you enough for the award --- Blogger We Wished Blogged More!  No pressure - right?  Seeing as it is 1/10 and this is only my 3rd post of the year it looks like I better get on it!!

In all seriousness I love the DOC, I love blogging, I love reading blogs and I love every single person that I have gotten to know through this blog.  Thank you to all that voted for me and I promise to really try and blog more!

  Remember I am on a mission to get T1D to TaTa status.  You will be hearing more from me - trust me!!




Here is a list of all of the winners from the 2010 DOC Awards:
Congratulations to all of those that were nominated and to all of the winners!





 


 

 

 

 



 

 

 


 

 

 


Everyone needs the love <3
 

 

Wednesday, January 5, 2011

HELP ME!

This post has been sitting in my 'draft' folder for quite sometime.  It swirls around in my brain all of the time yet I have never really been able to put it together. As I sit here tonight I am determined to get it out.  I think my problem is that I am afraid I am going to offend someone but today I was offended by what someone said on national television and it is not the 1st time!

I know most of my readers already know about the Ricki Lake segment on GMA this morning so I do not feel like I need to recap it here.  You can read some great blog posts about it on the following blogs:


Diabetesaliciousness™ 

Sweet to the Soul

Candy Hearts

We CARA A Lot!

The Diabetes Dude

The Princes and the Pump 

D Mom Blog


I am so very proud of each parent and each person with T1 diabetes that called and wrote to Good Morning America and Ricki Lake.  Our voices were heard!  Group Hug!!


Also, a huge thank you to Ricki Lake for making the correction on Facebook, Twitter, GMA Online and on the Joy Behar show.  I'm not linking up to Joy because she totally blew it.  Ricki gave a great apology and tried to set the record straight but Joy was totally rude and shut her down. UGH.  Boo Joy! Go Ricki!  It would be wonderful if she made the apology on national television -- the same platform where she made the mistake.  :)


Now on with my post. 

You see Ricki Lake is not the 1st person to perpetuate the misunderstandings of type 1 versus type 2.  At least Ricki was caring enough to admit that she made a mistake.  Hello HUGE ego OPRAH and your puppet Dr. Dumbass (oops - I mean Dr. Oz). You can read my post on Oprah and Dr. Dumbass here.

Even as a child with a parent with Type 2 I am offended by the misconception of EVERYTHING diabetes. I think we all know that Nate did nothing to cause his diabetes and although a lot of us T1 Mamas did pour sugar down our kids throats just for the fun of it <---- that did not actually cause Nate's T1.  The truth is not all type 2 diabetics can diet and exercise their diabetes away either. My dad is T2 and insulin dependent and has been for 20 years.  His might have been preventable at some point but by the time his was caught his insulin producing cells had been working so hard for so long they were KAPUT!  Anywho - I just wish people would stop making diabetes such a negative disease.  

Watch this great video by Joanne from Death of a Pancreas about what NOT to say to a parent of a Type 1 Diabetic  -- it's both funny and educational.  VERY FUNNY!  I watch it daily for a good chuckle!



I mean really what do we have to do to truly RAISE AWARENESS?  Diabetes doesn't have a cute pink ribbon or a fun slogan like 'Save the TaTas!'.  Don't get me wrong breast cancer awareness is important to me.  Helllloooo -- I have boobs and I have to say even after nursing 3 kids they still looks pretty good (without any surgical help - thank you very much) and I would like to keep them!! See - Breast Cancer is important to me!!  I just want to figure out how it got to be so World Wide.  I mean which pair of tatas got that ball rolling?  They have one hell of a marketing firm.  I mean who doesn't know what that little pink ribbon means?  

 

 

Or how about the hugely popular Red Dress Campaign?  How did they get all of those beautiful celebrities to wear those red dresses to raise awareness for Heart Disease?  Again, I am not knocking this campaign.  Heart disease is important to me as a woman and I am forever grateful that this campaign has opened my eyes to the risks that women have with heart disease.  I just want to know how this disease became so glamorous?

 







I'll try to be PC on the next one.

AIDS.  Really, I've actually never met anyone with breast cancer or heart disease (that I know of) but I have had friends/co-workers with AIDS. I would love to see an AIDS free generation by 2015 but how in the hell did AIDS become so damn trendy?  I mean - seriously?  Everyone knows about the Gap Red Campaign and I have seen countless celebrities speaking out and raising awareness on AIDS.  How did that happen?

I have to say that on World Diabetes Day not one of my Facebook friends updated their status to acknowledge WDD (D-Peeps excluded from that statement) but good hell I was bombarded with 227 Facebook status updates acknowledging World Aids Day 2010 on December 1st.  It really hurt my feelings.  Why is it so cool to acknowledge World Aids Day but not World Diabetes Day? Can anyone answer that for me? 

I'm almost done -

The last one is Autism Speaks.  This organization has done a phenomenal job raising awareness and educating on Autism.  I personally scoured their website searching for signs, symptoms, and ways to avoid an Autism diagnosis for Nate.  I don't know why I was so concerned about him other than the fact that I knew from their campaign that 1 in 70 boys is diagnosed with some form of the disorder. Type 1 Diabetes was the furthest thing from my mind when Nate was a baby.  I had seen countless celebrities speaking out and countless others giving THEIR opinion on what causes Autism.  One of our nieces has  Asperger's Syndrome so again I am very grateful for all of the media coverage, celebrity foundations and the celebrities bringing the disorder to light but again how did Autism become so media savvy?

Are there people out there like me?  Mom's of children with Autism that are screaming at Oprah and Dr. Oz because they are misinforming people?  Is all of the information I have wrong? I just don't know -

What I do know is that Type 1 diabetes doesn't get any of this kind of media coverage.  Or when it does get coverage it is always lumped with type 2 as 1 big disease that is totally preventable, and diet and exercise will surely cure it. 

Today the Diabetes Online Community totally rallied. We stood up and said - hey look at us and listen to what we have to say! We did it.  I'm so proud.

I want that everyday.  I want Type 1 Diabetes to be known.  I don't care what you call it - - - Type 1 Diabetes - Juvenile Diabetes - The Sugar Diabetes - The Bad Diabetes - - - - (ok maybe not all of those)  --- I don't want one more child to die because parents don't know the symptoms.  






I don't want one more T1 child to hear that their diabetes can be cured if they eat right and exercise.

I don't want people ever telling Nate that he had anything to do with his diagnosis.  These kids deserve better and so do the adults living with type 1 --- damn --- how hard is it?

We need One symbOl 
We need to unite.   
We need to educate.   
We need to be heard.   
We need to raise awareness. 
We need to find a cure.   
We need to fund a cure.

I mean seriously what is our symbol? A Blue Circle? A Red Ribbon? A Gray ribbon?  Why can't we decide?

I love me some Nick Jonas but beside seeing him (in a video) at JDRF functions I don't really see him out there.  I need some big celebrities in pretty dresses, sporting catchy type 1 logos & catchphrases on their t-shirts, I need one symbol, and I want all 419 of my Facebook friends to update their status about WDD on November 14th EVERY YEAR until we have a cure.  I want the media to get it right!

I don't want Nate to EVER be ashamed or embarrassed by his diabetes. My goal is to raise awareness and educate so that Nate never has to fight these battles.  I want more than anything a cure for my sweet boy but until I get one I will stand up and fight until the day that I die to protect him.

God gave me this special little boy and I NEVER question why -- I know why. I love him and I will care for him to the very best of my ability but God knew that when he gave this baby boy to me that I would FIGHT for him. I will fight for your children with type 1, I will fight for the adults living with type 1 --- I will fight!  I am a fighter and I will not give up.  No, I'm not a famous celebrity, I don't own a sexy red dress and I will never be on Oprah but I will do everything in my power to raise awareness and educate, educate, educate!!

Now - who's with me???????????

Tuesday, January 4, 2011

The Diabetes Dude and Super Nate

I know you already know that the Diabetes Dude  is doing great things for Type 1 Diabetes awareness but did you know that now Nate is helping him too?  Nate was accepted as a Jr. Ambassador to the Diabetes Dude to help educate and spread awareness about type 1.  The Diabetes Dude really wants to share the stories of other children with T1 who are living positively with their diabetes.  Please click HERE to check out the Diabetes Dude website and read the stories of some of the special children that have been selected.  Nate is in great company with some really special kiddos . . . some of them you may know . . . like super cute SweatPea from The Princess and the Pump and one of Nate's favorite buddies Kacey from Diabetes Sweeties!!

They are still accepting applications and would like to have an Ambassador from every state.  Please fill out an application online if you are interested in becoming an Ambassador or Jr. Ambassador for the Diabetes Dude.
Here is the information on the program taken from the website:

The Diabetes Dude is looking for kids to participate in his Ambassador Program
 
Are you a kid with type 1?  Would you like to help spread The Diabetes Dude's mission of raising awareness and support in your area for other families?  Well, The Diabetes Dude has just the thing for you!  Noah, The Diabetes Dude, has been helping to raise awareness and show support all over the country in the past year, but he's also realized he can't be everywhere at once, so, he's currently accepting applications for his new Ambassador Program. He's looking for kids to represent their state by helping him in 2011 to spread even more awareness in their own area.  They will be listed as an Ambassador under the "friends of DD" page and will have their own email address through www.thediabetesdude.com.  You must be willing to fulfill an entire year of service as an Ambassador, which will include answering emails promptly from people in your area, keeping The Diabetes Dude up to date on things going on in your area regarding diabetes, coming up with new ideas to spread awareness in your area, and spreading awareness of diabetes by representing The Diabetes Dude's mission of "I may have diabetes, but diabetes does not have me".  Other fulfillments MAY include meeting with kids with diabetes in your area, hosting get togethers, and possibly answering media inquiries from your local area.

If you'd like to be considered as a "The Diabetes Dude" Ambassador, please fill out the form below.  All applications will be accepted through December 25, 2010 (they are still taking applications).  All newly chosen Ambassadors will be notified on December 31, 2010 and their names will be released through The Diabetes Dude's FB, Twitter, website, etc.
 Some states may have more than one Ambassador. 



Also, this summer The Diabetes Dude will be visiting Diabetes Camps all over the U.S. with his new mascot The Dancing Diabetes Flamingo!!  If you are attending a diabetes camp and would like The Diabetes Dude and his Dancing Diabetes Flamingo to come for a visit send them an email at email@thediabetesdude.com.  Nate is still too young for D Camp but I certainly hope they make it to Texas so we can meet up with Noah and his amazingly awesome family!!


There is always something new and exciting going on over at TheDiabetesDude.com so check it out today and check it out often!!


Although Nate and Noah have never met they share a very special bond.  They both have diabetes, pump with the OmniPod and most importantly never let diabetes slow them down! In August of 2010 The Diabetes Dude and some of his friends flocked NYC.  It was AWESOME!  

From The DD website:

On Thursday, August 26th, The Diabetes Dude boarded a bus filled with friends with diabetes and their families.  They traveled through the night and arrived at the Today Show in New York City at 5 am.  They spent the next few hours flocking The Today Show and some of their stars and guests including Miss Universe!  They certainly drew a lot of attention, especially from people back home in Massachusetts.  After the Today Show, they continued their New York City flockings by stopping by the Toys R Us in Times Square where they were treated to a complimentary ride on the infamous indoor Ferris Wheel.  The kids all had a great time roaming the store and seeing the sights.  At 11 o'clock, they gathered in Times Square and watched the Kodak screen for a special "diabetes hour".  People from all over the country sent their pictures in to Kodak through www.aerva.com , which were then displayed on the Kodak screen during the hour.  It was hard not to become overwhelmed with emotion watching the pictures, some of people they knew, some of people they didn't, all coming together for one special event, unlike anything they've ever been a part of before.  All in all, the trip was a huge hit and one that the participants will never forget! 


Nate was actually featured on the Kodak big screen 3 times and I have to say even though I was not there the pictures that Noah sent us were emotionally overwhelming for our family.  We are so proud of Noah and all that he does to raise awareness for type 1.  I hope and pray that Nate and Noah always stay friends and that Nate is inspired by Noah's ambition and determination.  













Nate and Noah have diabetes but diabetes does not have them!

Also, check out on The Diabetes Dude site a new page for the SUPER COOL siblings of of type 1 kiddos -- SIBS R KOOL 2!! 

If you read my post about Emma and Sophie on Special Siblings of D-Kid Day then you know my 2 special girls are already featured along with some other amazing siblings of D-Kids.  So - - - what are you waiting for?  Get on over to TheDiabetesDude.com and check it all out! 

GO!


Seriously - why are you still here?


GO!!