Thursday, May 28, 2020

Observations of Life in a Pandemic

This is such a weird, unexplainable time where the rules and facts change everyday. I've tried several times to write down how I feel, but I really can't put it into words because everything is so confusing. So, instead I decided to document some of my observations about this time.

>Things we do now that would have been weird three months ago...
     -Visiting my grandpa at his assisted living home, but only talking to him through a window.
     -Quarantining groceries.
     -Keeping face masks in my van for when we go out.

We "visited" my grandpa for his birthday in March.

>Things we say now that would have been weird three months ago...
     -No, you can't hug Grandma.
     -Do you want to Zoom later?
     -We're social distancing.

>Davy was hospitalized overnight with suspected COVID-19 a week after the lockdown started. He's usually great with doctors and nurses, but the respirators (which sounded like quiet vacuums) and hazmat type suits that they had to wear every time they entered his room scared him. We were so happy when his test came back negative and he started feeling better!

Feeling better and ready to go home!

>I went for a walk with the kids the other day and passed a hair salon with a sign on the door informing people that they are closed until "insert date here." The date had been crossed off and replaced with a later one three times.

>My sister works as our PCA to help with therapies and other things, but when we went into lockdown, she stopped working so as not to expose our family anymore than necessary. I spent a month constantly redirecting my 4th grade son to stop wasting ALL OF HIS TIME and actually do his schoolwork with fun phrases such as "Nate, stop playing games on your (school) tablet and do your math worksheet" and "Nate, stop goofing around and write your essay questions!" plus other things along that vein. And then, Nate looked at me one day and smugly said, "You know, if you would stop talking to me, I would be done with my schoolwork already." I was already stretched extremely thin between his refusal to do schoolwork and managing Davy's meltdowns and therapies, and that was the last straw. That was the day we decided my sister needed to come back to work because I. Was. Done. 

Nate doing his schoolwork

>Yes, we baked bread from scratch during lockdown. Honey wheat bread using the same recipe with which I learned to bake bread.

This is the original recipe for honey wheat bread that I wrote in the front of my cookbook when I was a kid

>I was homeschooled and always envisioned myself homeschooling my own kids. That didn't happen, but when their school got shut down, I thought, "hey, here's my chance to try it out!" Boy, was I wrong. Distance learning with four different lesson plans into which I had no input with four different kids, two of whom did NOT handle the change in routine well AT ALL, was one of the hardest things I've ever done.

>We adopted a bear and some other random animals during lockdown. Haha, just kidding. The Google 3D animals are a lot of fun though! Search for an animal on Google, scroll down a bit on the search results and you should see a box that says "See this animal in 3D." Click on that and have fun!

Davy with our new pet bear

> When lockdown started, everyone was like, "the introverts are living their dream!" At first, I agreed, but then I realized that being stuck in the house with four talkative, active kids 24/7 was actually an introvert's nightmare. I may thrive on alone time, but I also thrive on meaningful interactions with my core group of people so not being able to talk to or see them has not been great for my mental health.

>Virtual piano lessons were an interesting experience.

Katie during piano lessons

>Meal planning is a lot harder when so many things are out of stock at the grocery store.

>Let's talk masks for a minute...I hate them with a passion because rebreathing my heated breath makes me dizzy and nauseous within minutes. However, all these people whining about having to wear them in certain businesses are really starting to irritate me. First of all, just as a business has the right to require a shirt and shoes, they also have the right to require masks. You have the right not to shop there if you don't like their rules. Secondly, the memes being shared all over Facebook about how masks are dangerous because of carbon dioxide...seriously? Health professionals have always worn them for long periods of time. If you're so worried about carbon dioxide and impairment, then you probably shouldn't let an impaired, carbon dioxide-breathing surgeon operate on you anytime soon. And if you're one of those fun people who are using the "I don't have to wear a mask because I claim to have a disability and I don't have to disclose it either because of ADA" excuse just so you don't have to wear a mask, thank you for making life harder for people who have legitimate disabilities.

Nate was the first one of us to have an appointment at the clinic when they started opening back up.

>Before the lockdown, I was trying to lose weight and eat healthier. It turns out that I don't diet during lockdowns though.

>Davy's village is made up of two preschool teachers, paras, a special ed teacher, a speech therapist, a physical therapist, an occupational therapist, and more. They have been doing all they can to support him at home, but I've been trying and failing to fill their shoes.

Davy doing speech therapy on Zoom

>Our school's teachers had a drive-by parade for the students. My kids loved waving standing by the road and waving at all of them. When it was over, Davy nearly cried because he misses his teachers so much. I'm just glad that back in March when this all started, our school decided to go through Tuesday instead of canceling over the weekend like some did because at least the kids got to say goodbye to their teachers.

>Parent burnout is real. I love my kids and I love spending time with them, but I'm struggling.

>I picked up some of our childhood games from my parents house to play with the kids. The Game of Life was a big hit. I read the directions and found out that we'd been playing it wrong my whole life. Oops.

>Virtual church is NOT the same as fellowshipping with your church family and being able to hear the sermon in person with them. I've been listening to extra sermons at home and reading my Bible more, but God created us to fill others' cups and have ours filled as well by being with fellow believers. I feel like my spiritual cup has been half empty for over two months now and it's HARD.

Easter at home was different, but good. The kids dyed real eggs for the first time.

>In the past, when things have happened in my life that have shaken my core, it was a comfort to know that outside of my bubble, things were the same. The world carried on as normal. This time, that's not the case. The whole world is changed, brought to a stop, and uncertain. There is no solid ground on which to brace myself. I don't like it.

>Is anyone else sick of the "We know it's a rough time for everyone and you've probably lost your job, but we're here for you if you want to buy a car!" commercials from the auto industry?

>My girls have been arch-enemies for a long time. I have tried everything to help them get along, but nothing has worked, except...a pandemic. They're best friends now and get along great with only a few snags here and there.

That elbow though...

>Like thousands of other people, we cut out hearts to hang on our windows. My favorite is the one cut out of the plastic wrapper from a packet of Angel Soft toilet paper.

>My sister and I have a running joke about potatoes because we're weird. One day, she dropped off a potato that she had made glasses for and named Spudnik. Davy fell in love and they were instantly best friends. Unfortunately, Spudnik didn't survive the lockdown.

Davy and Spudnik

>Getting a break from our usual 6-12 medical appointments a month has been pretty great. The clinic is just starting to schedule appointments again, and when Davy had one in the orthopedic/outpatient therapy department last week, the receptionist/scheduler mentioned that it had been a long time since she'd seen us. I laughed and told her that I wish we could say that we'd missed her, but it had been nice to have a break. She understood and there were no hard feelings. :)

How have you been doing the lockdown? I'd love to hear some of your observations too!

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.

Do you know what the most important thing you can give your chronically
ill loved one is? Find out here:

I thought having a name for my health issues would finally make everyone believe me when I said there was something wrong.

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!)
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
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
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.

How I study the Bible using the SOAK method + Free Printables

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:

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 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!


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.