Tuesday, March 10, 2020

Raising Awareness with MS Awareness Week



This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

This week, March 8-14, is Multiple Sclerosis Awareness Week!

We're already a few days in, but better late than never. Multiple Sclerosis is not on my list of diagnoses, but it does affect several of my loved ones so raising awareness for it is a cause dear to my heart.

Let's look at the facts of Multiple Sclerosis or MS.


What is MS? Multiple Sclerosis is a chronic, debilitating disease of the central nervous system.


What are the symptoms of MS? Symptoms can vary widely between people, but some of the more common ones are difficulty walking, tingling or numbness, fatigue, weakness, vision problems, bladder and bowel issues, and dizziness. 

What causes MS? No one knows although scientists believe that it can be caused by a combination of factors.


Who can get MS? MS affects 3 times more women than men and is usually diagnosed between the ages of 20 and 50.

How many people are affected? Nearly 1 million people in the US have been diagnosed with MS.

What resources are available?
National MS Society
Multiple Sclerosis -MS Connect Group
Moms with Multiple Sclerosis




Do you have MS or know someone who does? I'd love to hear from you in the comments!









Monday, March 2, 2020

The Most Important Thing You Can Give Your Chronically Ill Loved One


Maybe they were born with their chronic illness or maybe it developed later in life.  Either way, there's one thing that people with a chronic or invisible illness need more than anything else.

They need you to believe them.

The Most Important Thing You Can Give Your Chronically Ill Loved One

One of the worst parts of having a chronic illness or invisible disability is having people think we're faking it.  That we're doing it to get sympathy or so we can get out of doing things.  That we're hypochondriacs, lazy, wimpy, etc.  


We desperately want to be "normal" and to be able to do everything that you do, but our bodies simply won't cooperate.

I spent most of my life thinking that all of my pain, my weird symptoms, my inability to keep up with my siblings was in my head.  Doctor after doctor ran tests, shook their heads, and told me, once again, that they couldn't find anything wrong with me so I must be fine.

And then, when I was 30 years old, I finally had a doctor look me in the eye and gently say, "It's not in your head.  You have Ehlers Danlos Syndrome, and it explains everything."

She made me cry, but they were happy tears because my whole life had finally been validated.  I could finally stop lying to everyone and hiding how awful I really felt and how hard I struggled to get through each day.  I could finally slow down and take care of myself.

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Do you know what the most important thing you can give your chronically
ill loved one is? Find out here: https://bit.ly/2x1ffmt
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I thought having a name for my health issues would finally make everyone believe me when I said there was something wrong.

Nope.
It hurts worse now than it did before I was diagnosed because even though I have medical documents and specialists to back me up, some people still don't believe me.  It doesn't help that Ehlers Danlos Syndrome is something that many people haven't heard of or know much about.  Sometimes I wonder if it would make a difference if I had a "real" disease, you know, one that people know about. But deep down, I know it wouldn't. People will either believe me or they won't. I'm not going to waste my low supply of energy trying to prove myself to people who have already made up their minds.

So sit down with your loved one today, look them in the eye, and give them the best gift you can.

Tell them you believe them.












Tuesday, November 26, 2019

I Have a Secret...


I don't know if you've noticed, but I've been neglecting my blog over the last year or so. There have been a few posts here and there, but nothing consistent like I used to do.

I had a good reason though, and I'm finally ready to tell you all about it!

Let's back this up to last November in 2018. I participated in NaNoWriMo which stands for National Novel Writing Month. It's a writing challenge during which writers from all over the world try to write a novel in 30 days. The goal is to make it to 50,000 words by November 30th.

Much to my shock and surprise, I actually did it.

I'm what is called a NaNoRebel which means that I cheated and didn't actually write a novel. Instead I wrote a non-fiction book about being a chronically ill mom from a faith-based perspective. I had wanted to read a book on that subject, but couldn't find any available. Naturally, the logical reaction was to write one myself.

After writing, I spent so much time editing my book over and over again that I started to hate it, but all that hard work paid off.

Last week, I signed a publishing contract for my book.


I don't have a date for publishing yet, but I'll keep you all updated as progress is made on the book.

In addition to writing a book, I've also made some changes to Sunshine and Spoons. I closed my three Facebook groups and opened up just one new one instead so I can focus my energy better. The new group is called Chronically Ill Moms Together in Christ, and, if you're a mom who is living with a chronic illness and would like support from other believers, I would love to see you there! 














Monday, July 8, 2019

Teaching Responsibility with Age Appropriate Chores for Kids

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

My kids have helped out around the house since they were old enough to wield a dishrag.  As they've gotten older, I've given them more responsibility.

Children thrive and grow on responsibility. Sure, it can be scary at first (think of how you felt when you first started a new job), but it gives them so much confidence in themselves. Responsibility gives kids a sense of pride and accomplishment. Side note: Have you seen the toy vacuum from Dyson that actually works? I wish something like that had been available when my kidlets were younger! Rather than telling my kids that they’re doing something to help me out, I emphasize teamwork and family.  We all work together to take care of our home because we’re a family. We all help each other, especially when someone’s not feeling well, because we’re a family.

The whole teamwork thing applies to more than just cleaning the house though. Giving kids a sense of teamwork strengthens their bonds with each other and teaches them to work with others towards a common goal. They learn to negotiate instead of just bossing people around. The benefits of learning teamwork as a child are life-long.
To give you an idea of chores that are appropriate for your kids’ ages, I put together a list. Keep in mind that it’s meant as a guideline, and you should decide chores based on your child’s specific abilities. Scroll to the bottom to find a printable version of the list.
2-3 years old
Pick up toys and put in a toybox
Unload the silverware tray in the dishwasher (make sure you take the knives and anything else sharp out first!)
Dust
Put dirty clothes in the hamper

4-5 years old
Vacuum chairs and couch with handheld vacuum
Set table
Clear table
Wash bathroom sink (with safe non-chemical cleaners)
Fold dish towels
Match socks
Put clean clothes away
Feed and water pets
Help put away groceries
Wash doorknobs
Plus everything in the previous category

6-8 years old
Sweep
Fold laundry and put away
Clean microwave
Empty and load the dishwasher
Make bed
Wash dishes by hand
Pick up sticks in yard
Clean mirrors
Plus everything in the previous categories

9-12 years old
Rake leaves
Take out trash/recycling
Cook simple meals
Laundry
Mop
Vacuum
Clean toilets
Plus everything in the previous categories

13 years old and up
Clean shower/bathtub
Clean out fridge
Mow the lawn
Shovel snow
Change bedsheets
Vacuum out the car
Plus everything in the previous categories





How do you handle chores at your house?






Tuesday, January 8, 2019

How I Study the Bible Using the SOAK Method


For years, I struggled with how to study my Bible.  Reading a quick two-minute devotion in the morning seemed like eating a piece of candy instead of a full meal and reading through a chapter or two of the Bible didn't really seem to stick either.  I'd put it down when I was done, and that would be it for the day.  In 2015 though, I attended a women's conference and what I learned during one of the workshops changed the way I do my devotions completely.  


Courtney Joseph, founder of Women Living Well, spoke on the topic of how to study your Bible for busy moms.  Since then, I've learned a lot about the subject (and am still learning.)

  • Quality of quantity.  You don't have to power through a whole chapter of the Bible at a time.  If there are a couple of verses that stand out to you, focus on them that day.
  • Every piece of Scripture is applicable to ME.
  • Commentaries and study Bibles can be very helpful, but remember that they were written by people.  Fallible, imperfect people just like me.  Weigh everything you read and hear against the Bible.
  • Make God part of your everyday conversation.  At first it may feel forced, but the more time you spend with Him and the more you practice making Him a part of your life, the easier it will become.
  • Practice making prayer a true conversation and not just a quick "Dear God, I need this and help this person get better.  Amen."  I keep a running prayer list on my phone of praises, requests, etc.  I've also found it helpful to set my timer for five minutes and spend that time praying so I don't rush through it.

Courtney Joseph introduced me to the SOAK method of Bible study, and I've been using it ever since.  The letters in SOAK stand for Scripture, Observation, Application, and Kneel in prayer.  I've also heard it referred to as the SOAP (Scripture, Observation, Application, and Prayer) method, but I like SOAK because it reminds me that I need to soak in God's Word. 


Let's break it down a little bit more.

  • S-Scripture.  This is the Scripture that you're reading that day.
  • O-Observation.  This is your observations from the Scripture you read.
  • A-Application.  How does this Scripture apply to you?
  • K-Kneel in prayer.  Spend some time in prayer.  I usually write a short prayer regarding what I learned in my devotions that day and then spend five minutes praying through my prayer list. 

Please ignore the fact that I have super messy handwriting...this is why I normally type instead of handwriting things, lol.
 
I've found that it also helps to have some accountability.  I have a secret Facebook group for me and a couple of friends to study the Bible together, learn from, encourage, and pray for each other.

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How I study the Bible using the SOAK method + Free Printables
https://ctt.ac/9fplm
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I've had a printable devotional using the SOAK method available in my shop for a while, but I just changed the price so now it's free and always will be!  I hope you enjoy it and are able to use it to grow your relationship with Christ.  You can find it here or by clicking on the graphic below.              

I'd love to hear how you study your Bible.  Share your tips in the comments or on Facebook!







You might also enjoy:


http://www.sunshineandspoons.com/2016/11/30-random-acts-of-kindness-to-do-with.html


Monday, October 22, 2018

The Ultimate List of Ehlers Danlos Resources


In case you haven't noticed, I'm kind of passionate about raising awareness and understanding for the Ehlers Danlos Syndromes (which I've been told is now the right way to say it.)  I have this passion for five reasons.

Reasons 1-4: My kids.  Katie (10), Nano (8), Anna (6), and Davy (4) all have Hypermobile Ehlers Danlos Syndrome or hEDS which they inherited from me.  I want them to grow up in a world that I didn't grow up in...one that acknowledges and understands their condition and where doctors know what it is and how to treat it.

Reason 5: Everyone else with EDS.  Most people with EDS spent the majority of their lives being told it's all in their heads when that couldn't be further from the truth.  We're already at high risk for depression and suicide due to living in chronic debilitating pain and all of the other EDS symptoms.  Not being believed or understood makes everything so much worse.

The Ultimate List of Ehlers Danlos Resources

So, with that in mind, I put together a list of EDS resources, printables, freebies, awareness products, etc.

Tuesday, October 16, 2018

10 Facts About Handicapped Parking


I'm 33 years old, and I have a handicapped placard in the glove box of my car.  I got it about a year or so ago, but I've only used it a few times.  There are three reasons for that.  The first is that I only use it on my really bad days when I literally can't handle walking very far.  The second is that often all of the handicapped spots are full, sometimes with vehicles that are parked there illegally.  The third is that I'm scared of backlash because I look healthy and normal unless I'm using one of my mobility devices, and people can be cruel about invisible disabilities.  Stories like this, this, or this seem to pop up at least several times a month, and I know that I just don't have it in me to deal with something like that on my bad days.

So, in light of all the misconceptions surrounding handicapped parking, here are 10 facts about it that might shed some light on their proper use.

10 Facts About Handicapped Parking

1. You can have my placard if you take my disability to go with it.

Friday, September 14, 2018

Letting Go of Your Guilt When You Have a Chronic Illness

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

Guilt.

Just seeing that word makes you feel guilty, doesn't it?

My particular brand of guilt includes things such as feeling guilty for:
  • Working or resting instead of spending time with my kids.
  • Not being able to keep the house cleaner because of a lack of spoons.
  • Making sandwiches for supper for the third time in a week because I'm too exhausted to cook.
  • Not being on top of everything all the time.
  • Feeling like I'm not doing enough.
  • Losing my patience and yelling at the kids.
  • Forgetting to take pictures or video at one of my kids' special events.
  • Passing my crappy genes onto my kids.
  • Not being able to go outside and play with my kids (thanks heat intolerance and POTS!)
  • Not being able to work more.
I even feel guilty for having guilt.  And don't even get me started about Mom Guilt.

Letting go of your guilt when you have a chronic illness

My guilt is compounded by the fact that my body seems to be working against me (during the times when it works at all).  Having chronic disorders such as Ehlers Danlos Syndrome and POTS comes with an extra heaping helping of guilt because, thanks to today's emphasis on perfection and being productive, I often feel like I'm not good enough or worth anything.

But what it really boils down to is that I feel guilty for not measuring up to the world's standards. 

Monday, September 3, 2018

10+ Books About Ehlers Danlos Syndrome

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

When it comes to information on the Ehlers Danlos syndromes or EDS, the selections are pretty slim.  As the disorder is still classified as rare (although it's NOT rare, it's just rarely diagnosed), there just aren't a lot of books about it out there.  However, as awareness is increasing, the number of books has been slowly increasing as well.  I put together a list of the best books to learn more about living with and loving someone with one of the Ehlers Danlos syndromes.


Thursday, May 10, 2018

Too Much EDS Awareness?

May is Ehlers Danlos Syndrome awareness month and in the two years since I was diagnosed, I've thrown myself into it fully each May.  With a shockingly small number of doctors who are EDS knowledgeable and most of the general public having never heard of it, raising awareness is a very important step towards furthering research for EDS.  


For many years, doctors have been very hesitant to diagnose Ehlers Danlos Syndrome because it is considered to be a rare disease, too rare in fact to diagnose or see a case of during their medical career.  However, the truth is that it's not rare, it's rarely diagnosed.  It's also a hereditary genetic condition which means that a parent who has it has a 50% chance of passing it on to each one of their children.  In the case of my family, I passed it on to all four of my children.  EDS is definitely not rare in my family or in many other families either.

https://www.facebook.com/sunshineandspoons/photos/a.294103583951875.87052.181409978554570/2035565373139012/?type=3&theater


In the two short years since my kids and I were first diagnosed with Ehlers Danlos Syndrome, I've noticed a huge increase in the awareness of EDS.  The EDS groups on Facebook are growing in leaps and bounds as more people hear about it and realize that this may be the answer to their many unexplained medical issues.  More doctors actu
ally know what it is even if they don't necessarily know how to treat it, and it's becoming more common for people to respond with, "I know someone else with that too!" when I tell them that I have it.  The Ehlers Danlos Society recently received an anonymous $1 million dollar donation to be used on research of the hypermobile type of EDS which is the most common type. The American Journal of Medical Genetics released new criteria for diagnosed hEDS in March 2017.  This is all huge, and we're making amazing strides.  It's exactly what I and others with EDS have been fighting for.