Our sweetie pies

Our sweetie pies

Monday, June 5, 2017

starting research for master's thesis in medical anthropology

I am excited to announce that I have just been approved by my university to start my master's thesis research this summer.  We have been living with type 1 diabetes now for six years.  My daughter was diagnosed at age 3 and my son was diagnosed also at age 3, two years after my daughter was.  I have met many families along away and held back tears.  Our lives are changed forever with a diagnosis, and yet, we must continue on.  carry on.  keep optimistic for our kids and at the same time, hide our tears, and fears, and knowledge of what could happen.

I will be receiving a master's degree in anthropology in May 2018.  I plan to apply to a Ph.D. program to continue graduate studies in anthropology.  My specialty will be in medical anthropology and sociocultural anthropology.  I want to research what factors contribute to a family thriving after a diagnosis of a chronic illness and how it affects the family.  I plan to write a book after I complete my thesis, showcasing 10 of my families to be able to share their story and show the warriors that they are.

I have set up a funding site for my research this summer.  Right now, all of my expenses will be covered by myself.  If anyone is able to contribute to my research financially or are interested in telling me their story, you can donate to my go fund me page and email me at jenes14@yahoo.com.

I will keep you updated!

thank you!!


Monday, February 20, 2017

a friend's diagnosis

Today, I received a phone call that another child was diagnosed with type 1 diabetes.  I was asked to call and speak with her and encourage her and just be there for her.  I did.

How do I feel when I get these calls?  It's been four years now since our son was diagnosed.

 It's hard.   Every new diagnosis is my child again.  That moment where your life changes forever and then you realize how fragile life is, even for a child.

Even though, it has been four years for us, it still is us together, going through diagnosis all over again.  It's the seriousness of it, the sadness of it, the hope, the finality of it, the brand new world of it.
We live it everyday, whether it is maintenance or reliving those moments, prior to diagnosis, during the hospital stay, or the daily stress of the maintenance of their health.

We mourn for every family that has to hear those words, that their child is really sick and has a disease that won't go away.  The unfair lot, that we are all handed that was the last plans we had for our children.  Our children that are meant to be innocent and enjoy life.

Another diagnosis is another diagnosis of another family living with a burden that they didn't ask for.

We must join as a community and help take care of our young and give all of us parents an extra hug as most of us need it.

Thursday, February 16, 2017

six year anniversary since diagnosis

Our sweetie is now 9 years old.  She was diagnosed the day after Valentine's day, six years ago.  How is she doing?  How are we doing?  She is joyful, and lights up the room she enters.  She always has a group of friends following her and she loves and anticipates every new adventure that she gets to have.  

She wears an insulin pump and a continuous glucose monitor at all times.  She carries a little backpack full of supplies and a blood meter.  At school, her friends take turns carrying her backpack for her.  This backpack which of course is in the shape of a pikachu, has given her freedom to participate in activities.  She always has what she needs in case she is low or high.  

She has grown used to the idea of having type 1 diabetes.  It has become part of her identity.  She excels in school and is quite the natural organizer but diabetes follows her, wherever she goes.  During Sunday school, I have to stop and check her blood sugar to make sure she is okay to be left for an hour.  At school, I pop into the classroom during the day at different times to check in on her until she is able to give herself insulin.  She can only be left with caregivers that are familiar with diabetes care.  and yes, we still get lots of confusion from well meaning people thinking that knowledge of type 2 diabetes qualifies them to understand type 1 diabetes.

Quick refresher:  type 2 can go away.  their body still produces insulin.  their blood sugar levels are still fairly stable, yet high at times.  
type 1:  will never go away.  their body no longer has a functioning pancreas and no natural insulin.  their blood sugar numbers have no floor and ceiling.  They can roller coaster all day, everyday, forever from as low as 30 upto 600.  (normal is about 90)  

One thing that we have matured about is feeling more comfortable with her numbers at 120, where they should be.  We used to always be so afraid that if she was close to 100, which is good, she could drop under 70 (which is dangerous) and therefore we would worry.  With her cgm, we are now more comfortable when her numbers are lower because, it can alert us if she starts dropping (due to exercise or needing to eat)  

We have become reliant on the cgm at night as it can sit by her bed and alarm us through the night if she goes over 200 or less than 70.  I always joke about the (not so funny) death sounding alarm of when she drops under 50, that mimics the sound of a pac man character dying in a video game.  That sound will make me jump out of a deep sleep and run down the hall to her room faster than anything!  I think the lowest we have had was a 40 which is really scary.  juice is given and then you wait for the numbers to come back up to over 70 where they should be.

do we wish there was a cure?  yes.  Taking my child out to eat that doesn't have diabetes is so easy.  Her sister just eats.  and that's it.  no thinking required.  The burden of diabetes follows our sweetie like its own entity and would love for it to go away and give her a new found freedom.  but for now, it is there, and in spite of it, she thrives.  

Tuesday, November 29, 2016

new blog for my ramblings

I have started a new blog!


Please visit!

I love to write and continue to work on my graduate degree, so I created this new site to be able to just write my thoughts and observations!

regarding my family and two kids with type 1 diabetes...we are progressing in time.

Our son started first grade and daughter started third grade.  I am helping monitor them through their ccgms (continuous glucose monitors) and go to school when they need to be given insulin or for any other unforseen reason.  Their a1c's are close to their target range.  Our son has started  checking himself and both are counting carbs.  They both played soccer this fall and did well.  Our adventure continues.

 Thanks for checking in!

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.