Friday, May 19, 2017

Raising Awareness for Celiac Disease with A Southern Celiac!


This post contains affiliate links and I will be compensated if you make a purchase after clicking on my linksThank you for helping me keep this blog going!

In addition to being Ehlers Danlos Syndrome Awareness month, May is also Celiac Disease Awareness month! I invited Brittany from A Southern Celiac to tell us all a little more about it and help dispel some of the myths about Celiac's. Brittany also has Ehlers Danlos so we thought the partnership was perfect for us both. Please welcome her to Sunshine and Spoons!

May is Celiac Awareness Month, so Hannah has kindly allowed me to guest post on her blog! I'm Brittany, the Celiac behind A Southern Celiac. I was first diagnosed with celiac disease in 2012 at the age of 19 after having stomach issues since I was 18 months old! Stories like mine aren't uncommon, which is why I'm so passionate about spreading awareness for Celiac Disease.

Brittany2.jpg

Don't worry though, I'm not here to bore you with my diagnosis story. I've written that out before, and honestly, it was even tedious for me to re-read! Nope, today I'm here to share some surprising facts about Celiac Disease.  I'm assuming you know the basics. Celiac is an autoimmune disorder affecting the small intestine. When a celiac eats even small amounts of gluten, their body gets confused and attacks the small intestine. The only treatment is a strict gluten free diet. That seems pretty straightforward– but there's more to Celiac than it seems.

Wednesday, May 10, 2017

What It's Like To Be a Kid With Ehlers Danlos Syndrome

This post may be a little hard for you to read. I know I had tears in my eyes more than once while typing this up.

If you've been hanging around Sunshine and Spoons for very long, you know that at least 3 of my 4 kids have Ehlers Danlos Syndrome, which they inherited from me. Davy (3) and Nano (7) don't really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.


Kids are supposed to be able to run and play. They shouldn't have to deal with chronic pain and fatigue. They shouldn't have to spend their childhoods at doctors' offices, wearing braces and explaining random bruises.

But, that's not how things always work. I interviewed 25 kids who have EDS to see what it's really like to be a child or young person with the disorder. 



What it's like to be a kids with Ehlers Danlos Syndrome

Averie, 10 years old (hEDS) - "The hardest part is telling other kids that I can't do certain things, like play on the monkey bars, or do everything that my classmates are doing in gym class. EDS hurts a lot.  It's frustrating that you can't do as much as your friends, and POTS is really frustrating because I just have to explain myself more when I'm getting up more slowly than others, and have to draw attention to myself."


Anonymous, 7 years old - "I feel stretchier. It makes me feel like I'm the special kid. It's 'cause I have something that other people don't and that's why I'm feeling that way. It affects, like, sometimes I try to run and then part of my body hurts and then I stop." 

Anonymous, 6 years old - "I just feel like I'm extra good at gymnastics, and I wonder why other kids don't have their knees "fall off" like mine."

Kyle, 9 years old (hEDS) - "It doesn't really bother me, it just makes me who I am. the only thing I really hate is when I go dizzy & fall."
You know you have Ehlers Danlos Syndrome when...

Harriet, 8 years old (hEDS) - "Unhappy. I want to be normal. It's horrible being in constant pain and it's very unfair. I shouldn't have to deal with all this at such a young age. It is spoiling my childhood."

Nicholas, 11 years old (hEDS) - "Awkward and painful."

Charlotte, 4 years old (hEDS) - "I fall over loads, and I'm always tired.  I wish I could run about like my friends without pain."

Nicole, 17 years old (hEDS) - "I hate life. I'm constantly in pain, and I want to be like my friends. I hate that no one believes me, (apart from family, close friends, and Professor Grahame) and I want to be able to work and earn money like my friends." 

Dylynn, 11 years old - "I hate being clumsy, and I hate the knee braces, but I love the aqua therapy."

Kaitlyn, 16 years old (hEDS) -  "I'm lonely and in pain, nauseous, weak, extremely fatigued and foggy headed, dizzy and feel like passing out. I haven't been to school in 3 months. I'm tired of it all!!!"

Brandi, 6 years old (hEDS) - "It's not bad.  When my hands and feet are sleepy (numb) is what I hate the most. Oh, and my legs. They stay tired a lot."  

Sebastian, 5 years old (hEDS) - "I don't like it.  I wish I didn't have pain. It's not fun, and my medicine is gross." 
You can follow Sebastian's journey at My Sweet Zebras.

Jack, 7 years old (hEDS) - "I don't like that I'm so different and can't keep up with my class. It makes them be mean to me sometimes 'cause I'm not as fast as them and I can't play football or ride a bike like everyone else. I don't like being in pain & tired all the time or having to take medicine every day, especially when it doesn't work." 

Jessica, 4 years old (cEDS) - "It's too many doctors. I hate my boots (braces). I'm tired of getting hurt."

Kyler, 7 years old (cEDS) - "It's pain.  I want to run with my friends and play sports. But it hurts."

Simara, 12 years old (hEDS) - "I wish I didn't have EDS, Mummy.  Make it go away.  I hate having to wear my braces.  The kids ask me too many questions (about) why I have to wear them.  I hate my EDS." 

Nikolas, 9 years old (hEDS) - "It hurts me. I love to draw, but it hurts my hands. I hate when bits go the wrong way, like my elbows and feet. I hate when my shoulders won't move."

Mathew, 7 years old (hEDS) - "I hate that it's made me stretched (marfanoid habitus) and that I bruise and get nosebleeds all the time. I can't walk far, and running really hurts. I hate sports but my friends like it so I feel left out."

How YOU Can Raise Awareness for Ehlers Danlos Syndrome
Jack, 6 years old (hEDS) - "I don't like my wobbly ankles and wrists, but I like showing my teachers how I can pick my nose with my tongue."


Luke, 4 years old (hEDS) - "I fall over a lot which is ok, but not when my face gets cut. I don't like wearing my boots (braces) with shorts. I can't hold my pencils like my friends at school too."


Abigail, 8 years old (hEDS with vascular crossover)"EDS makes me feel unique.  It feels like I am hiding a secret because I don't really tell people that I have EDS. People just don't ask, so I don't tell. Sometimes I am sad when I can't play or do other activities that my friends do."

Kyler, 10 years old (cEDS with vascular crossover) - "I don't like when people stare at me all the time (he uses forearm crutches), or that people don't believe me (that he has EDS). I miss being a 'normal' kid. But I know God made me this way for a reason."

Dax, 7 years old (cEDS)"It feels very sad. l have to be sick every single day of my life. I feel like I have the flu every day. It feels like stabbing."

Katie (my daughter), 9 years old (hEDS) - I'm different than my classmates.  I like EDS because my class likes to see what I can do (ummm, we're going to have to have a talk about this!).  I don't like that I hurt all over somedays."  


What It's Like To Be a Kid With Ehlers Danlos Syndrome

I also talked to Kathy, whose 12-year-old daughter, Ellen has hEDS with a vascular crossover.  Here's what she had to say...

"Looking at the photos of Ellen...she looks healthy, happy and unaffected by her illness. The other day, she opened two packages (gifts), posed for photos and then was suddenly 'done.' Shortly after I took the photos, Ellen had a complete emotional meltdown. She was sobbing about how badly her body hurts and how she can not get away from the pain. It is frustrating when moving so little can cause her such distress. I, as her parent, feel helpless and heartbroken about this. As a parent, we want to help our children any way we can. I have no idea how I can do that. I can't take away the pain. I struggle to help her find 'comfort.' She agreed to take a bath and just relax in the tub for awhile. I could tell she skipped her pain meds as she was completely, mentally undone. I let her sleep in that day, and it completely slipped my mind. Obviously, the Gabapentin is working. I just don't think it is at the level it needs to be quite yet. My heart breaks for her.


What It's Like To Be a Kid With Ehlers Danlos Syndrome

This type of pain for a 12 year is difficult to describe, understand or help. I have watched my child crash and be crushed by the weight of the pain that comes from EDS. I have watched her miss school, day after day after month after year. Her friends continue to live life. She doesn't know how to find her place with them anymore. The anxiety and isolation are horrific. It is more normal for her to sit in a doctors office and have a relationship with her providers than to sit in a classroom with friends. That speaks volumes to what life with EDS is like. There isn't a day that she is not struggling. Not a day where her monstrous pain doesn't rear its head. Not a day she doesn't fight tears and sadness for everything she is missing out on. When I asked Ellen how EDS has affected her life... She replied 'what life.' Heartbreaking."

You can follow Ellen's journey at Empowering Ellen.

So, right there are 25 reasons why I'm working so hard to raise awareness and funds for Ehlers Danlos Syndrome.  Because these kids deserve it.
--------------------------------------------------------------------------------------------------------------------What it's like to be a kid with #ehlersdanlossyndrome: http://bit.ly/2r346dk 
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Please join me as we all raise awareness for these precious, awesome, superhero zebra kiddos!









You might also enjoy:

The best and worst news of my life: getting an EDS diagnosis after 30 years
Could YOU have Ehlers Danlos Syndrome?
















Friday, May 5, 2017

How YOU Can Raise Awareness for Ehlers Danlos



This post contains affiliate links and I will be compensated if you make a purchase after clicking on my linksThank you for helping me keep this blog going!

May is Ehlers Danlos Syndrome Awareness month!  As three of my kiddos and I all have EDS, this month is pretty special to my family.

To help raise awareness for EDS, I put together a list of resources and tips that can help you share the word and teach others about EDS.

How YOU Can Raise Awareness for Ehlers Danlos

Friday, April 14, 2017

Health Storylines App Review

  This is a sponsored post. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.
Link to asthma app: http://www.allergyasthmanetwork.org/asthma-storylines-self-care-tool-for-managing-asthma/

Maybe it's just me, but I tend to forget things easily.  So when I tell my doctor that something has been bothering me and she asks me for details, I stammer for a few minutes as I try to remember when, where, why, etc.

And then there are my meds.  I found out the hard way that forgetting one of my medications for even a day has really bad side effects for me so remembering to take them every. single. day at around the same time is super important.

I've been looking for an app for my phone for a while now that would allow me to track and remember my daily medical info so I was happy to try out Health Storylines.  The company has a long list of apps for different health conditions, such as sarcoma, epilepsy, heart problems, IBD, and MUCH more.  Since I have asthma, I installed that one. You can learn more about it here.

I had some problems with the app working right on my phone, which is an LG Treasure.  It kept shutting down, so I tried it on a Samsung Galaxy and it worked great.  I don't know if it was just my phone or what, but I was happy that it I didn't have any other problems after I switched devices.

The app prompted me to fill out a daily questionnaire to track my asthma symptoms which is something that my doctor is always trying to get me to do anyways, sooooo, that was a good thing.  There was also a way to track my daily moods.  That can be helpful for determining if your moods and hormones are increasing symptoms.


I was also able to add reminders for my medications in the app, which could even be customized with a time that the reminder will pop up on your phone.  Super handy when you have a medicine that needs to be taken at the same time each day!


Health Storylines has a place to take notes of questions you have for your doctor.  I think of questions between appointments, walk into the doctor's office, and promptly forget every single one.  I've tried writing them down on paper, but I inevitably either lose the paper or forget it at home.  I've always got my phone with me though so it's the perfect place to keep those questions.


You can also store your upcoming appointments in the app which will remind you when they're coming up.  I usually have 1-4 doctors' appointments each month and it can be hard to remember them so having an app remind me is very helpful.

The app is customizable to your individual needs, something I appreciated as medical needs affect each person differently.


The best part of this app though is that it's free for all android and ios users.  Which means that if for some reason it doesn't work out for you, you're not out anything.

What are you waiting for?  Head over to Health Storylines for a better way to handle your medical needs!






Thursday, April 13, 2017

How the Last Year has Changed My Life

This post contains affiliate links and I will be compensated if you make a purchase after clicking on my linksThank you for helping me keep this blog going!

I did it!

I survived a year of blogging at Sunshine and Spoons and have loved every minute of it!  It's been more amazing and successful than I ever imagined it would be.  The highlight of the last year of blogging has definitely been the emails I've received, telling me how a post I wrote helped someone.

To celebrate my first year of blogging at Sunshine and Spoons, I'm taking a cue from Mama @ Heart who also recently celebrated her first blogiversary.


How It All Got Started
I'd been blogging at Supermommy!...Or Not for about seven years.  It started as an online scrapbook of my family and it was fun to have an outlet for writing.  But in 2015, I started rethinking it.  I wanted to blog professionally, and I wanted to help people who were going through some of the same things I was.  I had gotten to the point that if something was taking a lot of my time, but wasn't necessarily benefitting my family, it was time to cut it out.  Rather than convert Supermommy!...Or Not, I decided to start fresh.  You can read about how I chose the name "Sunshine and Spoons" here.

A Look Back at Some of My Favorite Blog Posts
This is my 102nd post.  Yes, I know...I've been busy :)  I've written about everything from chronic illness to parenting hacks to gift guides.  In one year, my blog has been viewed over 270,000 times which is more pageviews than my first blog received in 7 years of blogging.

Tuesday, April 11, 2017

5 Things I Need From You as Someone With a Chronic Illness


Having a chronic illness is hard on so many levels, but having a good support system can make the difference between being able to handle the spoonie life or having it take you down.

If you know someone with a chronic illness, then you know that sometimes it can be hard to know how to be supportive, especially if your loved one has recently received a diagnosis.

On the flip side, it can also be hard to tell your friends and family what you need from them as a spoonie.  It's difficult to admit that something is wrong.  
 
5 Things I Need From You as Someone With a Chronic Illness

Here are five things I need from you as someone who has a chronic illness:

Monday, March 27, 2017

15 Coordinating Easter Outfits for Siblings


This post contains affiliate links and I will be compensated if you make a purchase after clicking on my linksThank you for helping me keep this blog going!

When I was a kid, I wanted to grow up and have, like, eight sets of twins.  I mean, look at how much fun it would be to dress them alike or in coordinating outfits especially for holidays like Easter or Christmas!!

Katie and Nano, 2010

And then I grew up and starting having babies and realized just how much work they are, even when they come just one at a time.

Nano, Anna, and Katie-Easter 2013

So, I settled on dressing up my four singletons instead.

My favorite way to do that is with handmade outfits.  I've always made them myself because I enjoy sewing and it can be next to impossible to find coordinating outfits for kids ranging in sizes from 8 to 2T in a store.

Thursday, March 16, 2017

A Better Way to Track and Organize Your Meds

  This is a sponsored post. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

Shaking and dizzy, I crawled into my bed and laid down.  The room spun around me.  I had just returned from a trip to the pharmacy to which my dad had to drive me because I knew it wasn't safe for me to drive.

All I could do was lay there in bed.  I couldn't even sit up or the intense dizziness hit me again.  Shaking, I unscrewed the childproof cap off the bottle of pills I'd returned from the pharmacy with and then managed to prop myself up on my elbow just far enough to swallow one of the pills with a gulp of Gatorade.

I wasn't sick.  I had forgotten to refill an important prescription and which lead to me forgetting to take it for several days, and the side effects of stopping the medication cold turkey were brutal.

"Never again," I promised myself.

Fast forward a few months, and I've forgotten to take my meds at least several times since then, thankfully for no more than a day at a time.

I'll be honest, I'm busy and forgetful.  Trying to stay on top of meds for myself plus 3 kids is tough.  Like so many with chronic illnesses, I frequently struggle with brain fog and remembering important things.  I know I'm not the only one who has these kinds of problems, so when I was introduced to PillDrill, I knew I had to share it with you.

Tuesday, March 14, 2017

A Day in the Life of a Spoonie Momma

This post contains affiliate links. Purchasing something through one of those links does not cost you anything extra, but it does help keep this blog going!  

As a special needs mom with special needs of my own, I'm often asked what my days look like.  So, last Friday, I journaled my whole day to give you a glimpse into my world.

A Day in the Life of a Spoonie Momma

Friday, March 10th.

Thursday, March 2, 2017

How to Inspire Your Kids to Love Reading

How to Inspire Your Kids to Love Reading with Reading Parties!This post contains affiliate links and I will be compensated if you make a purchase after clicking on my linksThank you for helping me keep this blog going!

I have an addiction, and I'm not planning to quit it.

However, having kids has cut down on the amount of time I have for my addiction.  Chances are, you have the same problem.

I am unashamedly addicted to reading.  I'd love to read all day if I could.

But...I have four kids and an insanely busy schedule so unless you count reading notes sent home from school and recipes off the back of a pasta box, reading is not something I get to do much anymore.

Even though I don't have much time for reading myself right now, I still want to instill a love of reading in my kids.

My mom taught my siblings and me to love reading and one of the ways she did that was with family reading parties.

You read that right.  Reading parties.