Our sweetie pies

Our sweetie pies

Sunday, February 7, 2016

wearing red and heart failure

Here is my helper.  He blogs for me when I am busy. :)

February is the month to bring awareness to our heart health.

This is a perfect month for this as we are already buying chocolates and cards to express the love spilling over from our hearts.

Just like type 1 diabetes, I also knew nothing about cardiomyopathy.

my little guy is now 16 months old and the end of my pregnancy led to me learning all about heart failure:

When I showed my obgyn, my swelled ankles, he said that it was hot that day and typical in pregnancy.  I had never had swelling in pregnancy before, though.

When I said that I couldn't breathe or lie down after I had delivered my baby, the doctor thought that I was suffering from anxiety or needed more sleep.  They even ordered a walker for me to just get out of bed!

x-rays finally revealed fluid in my lungs.  pneumonia was diagnosed, yet that didn't feel right to me.

The doctor decided to order an echocardiogram, just in case.  heart trouble was unlikely and rare for someone like me.  I was only 41 and healthy.  no high blood pressure or health problems prior to this.

yet, my echocardiogram proved invaluable.  my heart was too large and leaking.  I always hear the narrative from The Grinch who Stole Christmas where it was a good thing that day that the Grinch's heart grew three times its size.  For the Grinch it was a good thing.

But in a hospital, in real life, this was very bad.

I was in heart failure.  diagnosed with cardiomyopathy.  then they sent me home a few days later, thinking I would be okay.  Because I was naturally thin, my extra 30 pounds of fluid looked normal to the doctor.

I replay that night at home, in my mind over and over.  I am so lucky I survived that night.  I  couldn't breathe or even sit comfortably let alone lie down.

I had my husband take me back to the hospital, the next day where from the emergency room, I was admitted to the cardiac floor.  A heart monitor was clipped on me and I was now an official heart patient.  Two weeks later, I went home after an angiogram, lots of medication and thirty pounds lighter.

I survived.  Just as my children with type 1 diabetes survive.  We are survivors.

Take a moment to educate others on what life really is for those of us living with diseases.

Be thankful for those that don't have to.

just be thankful.

and eat some chocolate.  

Friday, February 5, 2016

A natural article that was grossly misinformed about type 1 diabetes

There was an article recently written in regards to American Girl recently adding a type 1 diabetes kit to their store.  Many of us have daughters that have type 1 diabetes and have American Girl Dolls.  American Girl Dolls have been selling dolls for years that are made to be like your daughter.  The child gets to pick the hair color, the eye color, the skin color, glasses, and many other choices to reflect the child.  This has been a fun way for a girl to be able to celebrate herself rather than just with a Barbie doll that inaccurately represents what girls grow up to look like.  American Girl even sells dolls with history and educates girls on different time periods and cultures.  There are movies and books that tell these stories featuring the girls that are then sold as dolls.  

But what if your daughter breaks her leg? or gets braces?  Do they still feel as lovable as the girls in their class?  American girl has been selling little wheelchairs and crutches and  headgear for dolls to again validate what our daughters may be going through.  

But what if your child is suddenly diagnosed with a disease?  What if your world is turned upside down one day at a doctor's office when the doctor tells you that your child will be taken by ambulance to their nearest hospital because they may die if not treated?  This has happened twice to us.

Our daughter was diagnosed at 3 and then two years later, our son was diagnosed also at age 3.  No connection except for coincidence that they both happened to be age 3.  Our daughter had been a healthy girl that suddenly stopped  running.  She was too tired to finish riding her bike around the block.  She couldn't go to the bathroom enough.  four times an hour.  And yet she was still thirsty.  What had we done to cause this?  Nothing.  It is an autoimmune disease.  Her pancreas was dying.  Therefore her body couldn't produce insulin for her anymore and her body was beginning to shut down.  We didn't know anything about type 1 diabetes.  I thought it must be a bladder infection.  The doctor routinely did a urine test among other tests and that is what prompted an immediate call to the endocrinologist and an immediate trip to the hospital.  I will never ever forgot the picture in my mind of her sitting listlessly on the floor of the doctor's office, playing with a nurse while I tried in shock to reach my husband by phone.  

The picture on top shows the young girl that started a campaign with her mother to get American Girl also carry a diabetes kit like she wears so that her doll could also be like her.  Because any child like her or my daughter once diagnosed, is burdened with a lot of equipment to stay alive.  She no longer wanted a perfect doll that looked like her.  She wanted a doll that also still smiled while wearing a pump that gave her body insulin, a meter to constantly check her glucose levels throughout the day.  glucose tablets(smarties)  to prevent passing out from too low blood sugar levels and a few other items.

The next photo shows a woman's son and his devices that he wears to stay alive and thrive.  He is wearing an insulin giving device on his arm and his watch actually shows his glucose levels that is being transmitted by a different device.  

The third photo shows a new device that is being developed through research that is actually leading towards a cure for type 1 diabetes.  This involves introducing new cells into the body that the body won't reject since type 1 diabetes is an autoimmune disease.

The last photo is my son's continuous glucose meter that he wears and woke me up at 5 am this morning alerting me that his glucose levels were going too low.  Thank goodness for these devices and alarms that keep him safe and healthy, yet a tired mom I am.  

And this leads us to an article recently published by a natural health website.  The author decided to critique American Girl's decision to sell type 1 diabetes kits for dolls.  The author then decided to write as much uninformed propaganda that they could about parents of kids with type 1 diabetes, children with type 1 diabetes, and even that type 1 diabetes is already curable and caused by bad diets and bad parents and how could American Girl support such an atrocious thing??

Well...here's my rebuttal for anyone that takes garbage for fondue.  Talk to a parent of a child with type 1 diabetes.  Pay attention to the tears rolling down our faces as you ask us what type 1 diabetes really is and how it has affected our lives.   We might even tell you about some kids we know about that actually have passed away from not being diagnosed properly or going too low in the night before they could be treated or ending up in the hospital sick with too high glucose levels and kidneys shutting down.  Then we might tell you how amazing our child is.  And that they are our heroes.  They have taken hundreds of shots, site changes, blood work, lots of times  pulled aside at school or in the middle of a soccer game to be checked.  They survive and thrive.  And so do we.  

To: Natural News that thinks they know more than us; I hope you don't find yourself with a diagnosed child one day and have to join our club.  Your ignorance may cost them their lives.  The good news is that we would be there for you.  we are far more educated and we are more gracious too.  We would welcome you and support you as its not a fun club to have to join.  But in our club, we don't condemn, we share coffee and wipe each other's tears.   We keep each other going.  Because we know how serious this disease is and yet have to keep strong for our kids.  And this is why we love that American Girl has included a kit for our daughter's for their dolls.  It's just one small thing that a company can do to help our daughter's still smile in a tough world with an unfair diagnosis.  If you ever find yourself in this situation and across the table from us, drinking a coffee, we might even offer to  buy you a type 1 diabetes kit to go with your child's American girl doll.  

Because isn't that what it's all about?  Helping kids and families to grow and thrive?  

It easy to think that you have all of the answers until you are suddenly asked to live it.