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.

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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.