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.