A New Diagnosis for Davy

Thursday, April 29, 2021

Davy had an appointment with his geneticist that day to find out the results of his Whole Exome Sequencing or WES. It had been a few years since we'd done any genetic testing for Davy, and I was fully expecting the results to be the same as the other tests we'd done with nothing significant found. 

Several years earlier, our geneticist had told me that despite diagnosing Davy with hypermobile Ehlers Danlos Syndrome, she felt that he had another genetic syndrome as well and wanted to keep looking. EDS explained a lot of his issues, but there were still some things that didn't quite fit in that box. Multiple genetic tests had always come back negative so we had taken to writing things off as "that's just Davy!"

Once we were back in the exam room, I tried to keep a very impatient Davy calm and occupied while Hubby and I waited for the geneticist. 

When she entered the room, she had a stack of papers in her hand and a triumphant smile on her face. 

"We have answers!" 

I just about fell off my chair. I had been expecting her to tell us the test was negative, just like we'd been told so many times before over the last seven years. 

She started asking us questions that she already knew the answers to, having followed Davy since he was a year old: 

Did he have feeding issues? He had to have a feeding tube as an infant to keep him from starving to death.

Was his hair thick and curly? For sure. If we didn't keep it short, it was uncontrollable.

Did he have speech issues? He had a diagnosis of apraxia and struggled to speak and be understood. 

Did he have hypotonia? Yes, definitely.

As the questions continued, I was stunned at how well they fit Davy. It turned out that he had tested positive for a mutation on the CDK13 gene or CDK13 related disorder. It was newly discovered in 2017 and medical literature noted that only 44 individuals worldwide had been found to have it. Our geneticist had never even heard of it before Davy was diagnosed. 

When the geneticist was done talking to us, the genetic counselor sat down to help us navigate our new reality. He recommended joining a CDK13 support group on Facebook that he had stumbled on in his search for some information to share with us. Davy had two more appointments that day and before we had left the clinic, I had already found the group and requested to join. When the administrator contacted me to verify Davy's diagnosis before admitting me into the group, she mentioned that she had been able to easily pick Davy out of my profile picture, which had all four of my kids in it, based on his facial features which are unique to people with CDK13.

Once I joined the group, I found that CDK13, while very rare, isn't quite as rare as what our geneticist thought. We were the 170th family in the world to join the group because of their child's diagnosis and the group continues to grow. After seven years of not having answers to Davy's unique issues, being able to talk to other families and getting to "meet" their awesome CDK13 kiddos (many of whom look like siblings to Davy!) has been so amazing. 

We don't know exactly what Davy's future holds, but we do know that he doesn't have any of the potentially life-threatening issues that people with CDK13 sometimes have such as a heart defect or seizures. He does have quite a few of the other symptoms of it such as unique facial features, thick curly hair, speech issues, developmental delays, hypotonia, feeding issues, autism, gastrointestinal issues, reflux, and more. Some kids with CDK13 tend to be very cuddly and loving and Davy definitely has that trait which is one of the things I love about him. I wouldn't change him for the world. No matter what struggles he faces in life, he is exactly how God designed him and we will support him to always do his best. Davy is an amazing blessing and he is who he is because of his CDK13, not in spite of it. 

This shirt is available at the Sunshine and Spoons Shop

September 2nd is CDK13 Awareness Day. I'd love for you to help spread awareness so hopefully other families can find the answers and support they need. 

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September 2nd is CDK-13 Awareness Day! If you've never heard of it, learn more here: https://bit.ly/3zH4j8U

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I would appreciate it so much if you would share this post! You can also add a frame to your Facebook profile picture by searching for "CDK13" in the frames.

But If Not...: Praising God Through the Pain

At the beginning of July, Hubby and I packed up the whole family and we went for our fourth year to Camp Chetek's family camp. 

The week started off HOT and humid with temperatures reaching almost 95 degrees Fahrenheit on Monday. If you've been around here long enough, you probably know that heat and I don't mix. At all. Anything higher than about 70, and I'm headed straight for heat exhaustion. Generally speaking, if I get overheated, it takes me at least a week or two to recover depending on how bad it was. 

This time, I didn't have a chance to recover and gain any spoons back. I had to jump straight into a week of family camp.

On Monday afternoon, I was in a pretty awful mood. I was grouchy because I felt absolutely horrible, and I knew that the rest of the week would be more of the same. I had been hoping to do at least a few activities with the kids, but knew that it wasn't going to happen (we did do the escape room on Wednesday though and that was fun!). I felt like I was letting my family down by not being able to do things with them, and I was not too happy that my body was once again letting me down by being a total jerk.

That night was our first chapel service of the week. The speaker for the week was Ben Everson (whose preaching and music I highly recommend!) and his sermon on Monday evening was on chapter three of Daniel. In case you don't remember what happens in that chapter or you don't have a Bible nearby, it's the account of Shadrach, Meshach, and Abednego when they refused to bow down to the golden statue that King Nebuchadnezzer had set up. The king had commanded that everyone bow down to the statue and if they didn't, they would be thrown into a fiery furnace. Shadrach, Meshach, and Abednego's response to that command is found in verses 16-18.

Shadrach, Meshach, and Abed-Nego answered and said to the king, “O Nebuchadnezzar, we have no need to answer you in this matter. If that is the case, our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliver us from your hand, O king. But if not, let it be known to you, O king, that we do not serve your gods, nor will we worship the gold image which you have set up.”

To sum up, they told the king that they would not bow down to the statue and that God would be able to save them from the fire. But the first three words of verse 18 are where it gets real. 

"But if not..."

Even if God didn't choose to save them from the fiery furnace, they would still serve Him.  

My troubles looked a little less daunting at that point. 

That night, I decided that if God allowed me to have health issues that week, I would still serve Him. Period. I would not allow those issues to ruin a week spent with my family learning more about Jesus.

Guess what happened next?!?

My health continued to tank all week. 

By Wednesday, all of the walking, the heat from Monday, the sudden plunge into cold temperatures (90s on Monday and by Wednesday, it was in the 60s), and everything else was really taking its toll on me. My vision was wonky and made me feel like I was walking around cross-eyed, my joints were in excruciating pain from giving out on me and subluxing, my muscles were spasming almost constantly, my fatigue was so severe that I could barely put one foot in front of the other and it didn't help that my foot drop had kicked into overdrive making me trip frequently, my autonomic system had taken a vacation and all of my signals (am I hot or cold? hungry or full? etc.) were mixed up. It will be weeks before I get back to my baseline.

But it was still a fun, encouraging week, and the only reason was because I chose to focus on God instead of my problems. I asked Him to heal my pain and fatigue so I could spend some time actually doing things with my family, but He didn't. 

"But if not..."

Some people would probably take this opportunity to ask why God wouldn't heal me if He truly loved me. I covered that in this post, but to sum it up, I learned a lot more and grew as a believer more last week at family camp than I would have if my health had been great. My circumstances do not dictate my relationship with God. 

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"But If Not..." Praising God through the pain : https://bit.ly/3ykNyQt

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Has there been a time in your life when you chose to continue to serve God through a trial? I'd love to hear your story!

Introducing the ComfiGO Booster Seat from ClypX

Disclaimer: I received a product in exchange for my review. However, all views and opinions are my own. 

It's been over 13 years since I installed the first carseat in my car. 

Full disclaimer: I couldn't figure it out and actually asked my sister, aka the carseat wizard, to do it for me. 

But anyway...the point is that I've had carseats in my vehicles for a long time. From infant carriers to convertible seats to backless boosters, we've been through them all and have usually had multiple carseats installed at a time. 

Right now, my two oldest kids, Katie and Nate, are 13 and 11 years old respectively and are out of carseats. The two younger ones, Anna and Davy, ages 8 and 7 are both still in booster seats. 

Davy was not in the mood for pictures, but we got one!

We keep extra backless boosters in Hubby's pickup and at my in-law's, but they seem to always be in the way and needing to be moved in and out of vehicles. So, when I saw the new ComfiGO booster seat from ClypX, I was pretty excited about how small and lightweight it was. The center seat of my minivan's bench seat is almost unusable when there are two booster seats being used there and anytime I have an extra child (friend, niece, nephew, etc.) riding along with me who needs a booster seat, I have to reconfigure our regular seating for the kids. 

Standard backless boosters work by bringing the child up to the seatbelt. The ComfiGO works by bringing the seatbelt down to the child. It's easily portable and would be especially great for grandparents or families who are traveling. The flat, flexible seat has anti-slip rubber on the bottom to keep it in place and also has the option to connect it to your vehicle's LATCH system. It's ready to go in just three easy steps (so easy that a brain fogged, exhausted mom like myself could figure it out in less than five minutes!) and, once it's adjusted to your child, only needs to be readjusted when your child grows.

Here's a video that shows just how easy it is to install the ComfiGO booster seat:

ClypX® | Installation of comfiGO® Kids Friendly Booster Seat, Full Version from ClypX on Vimeo.

The ComfiGO is for kids ages four and up who weigh between 40 and 110 pounds and are between 40 and 57 inches tall. When 8-year-old Anna sat down on it, she couldn't stop gushing about how much more comfortable it is than her regular hard boosters. After I adjusted it to be just right for her, she was able to easily unbuckle and rebuckle her seatbelt on her own.

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Introducing the ComfiGO Booster Seat from ClypX: https://bit.ly/2SyGTCq

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The ComfiGO booster seat is a definite winner in my book and will get a lot of use in our family! 

What do you like best about the ComfiGO?

Essential Tools for Moms with Brain Fog

 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!

If you have a chronic illness, you probably experience brain fog at least some of the time. 

Confession: I wrote that first sentence and then stared at it blankly for 20 minutes. Brain fog, anyone?

Anyway...like I was saying, brain fog is real and it can make life pretty difficult sometimes. Add in a few kids (hello mom brain!) and it gets really interesting. The struggle is real.

I use a lot of tools to help me manage my brain fog. My smartphone is the biggest one and what I refer to as my "external brain." I also work hard to stay organized with my home and schedule, stick to routines so I don't miss anything, and break down big tasks into smaller, more manageable ones.  

I'm going to share some tips, tricks, and tools for brain fog with you in the hopes that they'll help you as well. 

Google calendar

I used to carry a paper planner with me at all times to keep track of my calendar, but I needed to lighten up my purse to cut down on shoulder strain so I reluctantly made the switch to using a Google calendar. It turns out that I love it! I especially love that I can sync it with my husband and share it with my sister.

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Post-its

This one's a little less high-tech, but still very useful. I use them to leave reminders for myself around the house, notes for my kids, and I even write Bible verses on them so I can see them throughout my day. You can even get sticky notes pre-printed with Bible verses here. 

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Phone alarm clock

Thanks to distance learning with four kids who all have virtual classes, I currently have 17 alarms set to go off of my phone throughout the school day. Thankfully, that's not the norm for me, but I do use my phone alarm on a regular basis to help me remember things such as appointments, picking kids up from activities, and just about anything else.

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Tile

If you're like me, you're constantly looking for your phone, your keys, your purse, your mind, etc. Tile can't help you when you're losing your mind, but it's great for the other stuff! 

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Smart notebook

I don't write by hand as much anymore because it hurts my fingers and hands, but I'm still pretty obsessed with notebooks and always have at least one going at all times. I use it for my devotions, to write lists and reminders down, to plan things, etc. When I discovered smart notebooks, it blew my mind! Write in the notebook with a Pilot FriXion erasable pen, scan it and upload to your favorite cloud service, erase, and start again. I love that what I write can become digital so I can save and easily find it again. Plus, it's endlessly reusable!

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Flaredown App

This app helps you track your symptoms and is available for Androids and iPhones. This can make a huge difference in managing your health and being able to show your doctors exactly what's going on with you. 

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Medisafe App

Do you ever forget to take your medicine or is that just me? If that's something you struggle with too, this app can help remind you to take your medication and can even be synced with others so someone else can check in on you or so you can make sure your child or other loved one is taking their medicine. Oh, and did I mention that it's free??

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Motivated Moms App

I've used this app for about 10 years now and LOVE it. It helps me keep my house from reaching disaster levels by giving me a list of simple chores to do each day. They can be customized and even assigned to others in your house. 

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Cozi App

I haven't personally used this app, but I've heard rave reviews about it from lots of other moms so I thought I better include it in the list. Cozi is a family organizer that keeps your whole family on track and in communication with each other. 

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Chronic Pain and Symptom Tracker book

If you prefer to go old school, this book covers a lot of ground and can make tracking your symptoms and other aspects of your care easy to do and share.

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Mrs. Fisher's Imperfectly Perfect: Housekeeping for the Chronically Ill book

Need some tips for how to clean your house while minimizing your pain and fatigue? This book covers it all and is a must-read.

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This last one isn't really a tool, but it's a blog post about getting organized from Chronic Illness Warrior Life that I found to be very helpful. Check it out! 

What tools do you use to cope with brain fog?

Win a Signed Copy of "Yet Will I Praise Him!"

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!

Guess what? Today is my birthday! Normally, I don't get too excited about my birthday because being the center of attention just isn't my thing, but this year, I can't wait! This year, I'm doing something a little different that takes the focus off of me and puts it on you. Yup, you! 

For my birthday, I'm giving away five signed copies of my book, Yet Will I Praise Him. The giveaway will run from May 12 through May 31st on Goodreads. You can enter via the widget below or by clicking here. 

Goodreads Book Giveaway

Yet Will I Praise Him

by Hannah Wingert

Giveaway ends May 31, 2021.

See the giveaway details at Goodreads.

Enter Giveaway

I would love it if you would share the giveaway with anyone you know who might benefit from the book as well! 

This post is linked up at the Friendship Friday Blog Hop.

Why Mask Mandates Are Ableist

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!

I caught your eye with that headline, didn't I? Let me start by saying that this blog post is not about the efficacy of masks or the severity of COVID-19. It's not a pro or anti mask post. If you're here to argue about any of those things, please read this with an open heart and mind. Feel free to leave a comment, but know that any comments that miss the point of this post or are just downright mean will be deleted because I don't want any wars to start in the comment section.

Ableism: Treating people unfairly because they have a disability (an illness, injury, or condition that makes it difficult for them to do things that most other people can do.)

I've become a social pariah. I'm not welcome out in public anymore. If I do have to go out somewhere, I feel like a criminal, constantly pulling up the bottom of my mask to get a breath or furtively tugging it down for a few seconds when no one's looking. I haven't been to a store in almost a year except for a quick stop at a small local store for milk or some other essentials that can't wait until my next online grocery order at Wal-mart. I still brave all of my kids' regular doctor appointments and therapies, but I pay for them, spending 10-15 minutes sitting in my van after walking out of the clinic, waiting for the world to stop spinning and going black around me and hoping that my crushing headache and nausea will let up at least a little so I can drive safely. I have a severe heat intolerance due to Dysautonomia and the way that the air heats up and becomes humid in a mask makes me very sick every time I have to wear one. My body simply cannot tolerate it. 

"You'll get used to it" is what people told me at the beginning of the mask mandate. I wish that were the case, but it's gotten worse each time I have to put a mask on. My 13-year-old could tolerate them at first, but now she finds herself blacking out repeatedly when she wears a mask. After she came home from school recently and told me that she had blacked out 58 times that day, we got permission from the school for her to wear a face shield instead although those give her a pressure headache. At least a headache is better than blacking out constantly. 

At this point, I've spent well over a hundred dollars buying different styles of masks, desperate to find one that will work for me. I've found that the only ones I can tolerate for even short periods of time are the blue surgical masks. I've tried a variety of face shields as well and while they are a little better for my breathing, they give me a splitting pressure headache and are very annoying if I have to move around much so I only wear them for the meetings I have to attend in-person. 

It's not a matter of not wanting to wear a mask or not agreeing with them. I'm not even going to tell you how I feel about masks in general because that's not the point here. The point is that I can't safely wear a mask. My life would be so much easier right now if I could wear a mask. 

People who live with a chronic illness know how it feels to be left out, to be told that they're lying about their health, that it's all in their heads, that the accommodations they need aren't important. But when I asked for help in dealing with my inability to wear a mask in several online chronic illness groups, I was met with anger, hatred, and bullying from the people who should have the most compassion for someone who does not fit the "norm" and is struggling with their health. The same people who have dealt with ableism and discrimination their whole lives because of their disabilities are now happy to inflict it on someone else because of their specific medical issue. This is the opposite of the inclusion we have been fighting for. 

I have been told that I'm selfish, that I don't deserve to be out in public even for much-needed medical appointments, and told that they hope I die from COVID (joke's on them. I caught COVID and survived.) These people, who say that they want everyone to wear masks to save lives, are wishing death on people who can't. You can't tell me that your priority is saving lives and then in the same breath, tell me that you hope I die. That's just not logical. 

I've also been told that if it's that bad, I should just get a mask exemption. I did actually ask my doctor about one last June, but the clinic has a policy against doing so. Also, businesses can create their own policies and if they have a strict mask policy, then having a mask exemption isn't going to help. 

There are a variety of reasons why someone would struggle with or be unable to wear a mask, from sensory issues to breathing problems. There are also a variety of ways that masks affect those people.

My friend Kristina said it perfectly... 

"We don't all have the same baseline needs, so just because one person can wear a mask does not mean everyone can."

Here are just a few stories from other people who can't wear masks.

Daphne, an author of multiple books, can't wear a mask because the humidity that builds up in the mask causes her to have an asthma attack.

When Seth from My Sweet Zebras wears a mask, it makes his Tourette's tics worse. He also has Autism Spectrum Disorder and his sensitivities from that keep him from wearing a mask.

Kristina has Postural Orthostatic Tachycardia Syndrome or POTS and has trouble getting enough oxygen. Wearing a mask causes her to develop post-hypoxia dystonia. Because she can't wear a mask safely, she has been forced to forego her last three echocardiograms (by a medical clinic which is supposed to be working to keep ALL of their patients safe, not endangering their health by refusing to provide much-needed medical care) and was kicked out of an eye clinic for lifting her mask temporarily to try to get a breath.

Stephanie has pectus excavatum and severe asthma. Wearing a mask makes her breathing symptoms much worse.

Barb has Bronchiolitis Obliterans Organizing Pneumonia. Her years of taking Prednisone to treat that caused her to develop Cushings Disease as well. When she wears a mask, it makes her breathing symptoms worse and causes her to break out with severe acne.

Emily has severe asthma and has an asthma attack when she wears a mask.

Brandy has abdominal surgery and is unable to comfortably take a big breath because of the scar. She was forced to wear a mask at a medical clinic or her appointment would have been canceled. She passed out because of the mask while at the clinic and woke up in a hospital bed unable to speak clearly. She was diagnosed with having had a mini stroke due to oxygen deprivation.

I'd love to hear your story! Leave a (kind, respectful) comment and share your story about how masks affect or don't affect you. 

Why I Stopped Using a Digital Bible in Church

 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 I got my first smartphone four or five years ago, one of the first things I downloaded on it was a Bible app. I often took notes in my physical Bible, but trying to cram them in the margins and being limited in space frustrated me. I loved that having a Bible app on my phone gave me unlimited space for notes. I could also easily highlight verses without having to remember a highlighter in my Bible bag. 

I still feel the same way. Being able to easily switch between Bible versions and use Bible commentaries without having to lug around big heavy books is great. I also love that no matter where I am, I always have a Bible with me. In addition to the Bible apps I use, I also have found a variety of other apps that have helped me grow as a believer.

But a few weeks ago, I was listening to a Podcast on discipling my kids from FamilyLife and the speaker said something about preferring not to use the Bible on his phone during church because it can easily send the wrong message to our kids even when we're being responsible and not being distracted with notifications and texts. It stuck with me and I decided to make a change. I got my Bible back out of the drawer, found a small bag to carry it in (I like bags like this or this,) and added a notebook and pen (these are great pens if writing is difficult or painful for you like it is for me!)

The next time we went to church after that was for Wednesday night Bible study. 13-year-old Katie, recently graduated from the kids' program downstairs to sitting upstairs with us, settled in on the pew next to me, as we chatted about random things and waited for the pastor to start the Bible study. Then she said something that struck me to the core...

"You're just scrolling on Facebook or Instagram during church. I know that's why you have your phone out."

I was horrified that that's what she thought I'd been doing in church every Sunday morning and Wednesday night and, it definitely solidified my decision not to use my phone in church anymore.

As I tried to set her straight, I realized something. 

Using the Bible on my phone in church is not a bad thing and it's definitely not a sin, but if it's a stumbling block to someone else's faith, especially my children, than it's something I need to let go of. 

Paul specifically warns about this in several places in the Bible.

"Be careful, however, that the exercise of your rights does not become a stumbling block to the weak."

I Corinthians 8:9

"Therefore let us stop passing judgment on one another. Instead, make up your mind not to put any stumbling block or obstacle in the way of a brother or sister."

Romans 14:13

Now, I bring my physical Bible to church, use a notebook to take notes, transfer those notes to my Bible app when I get home, and leave my phone in my purse while I'm at church. If I want to research something further with a commentary, I write that down in my notebook and take care of it after church.

If you choose to use a digital Bible on your phone during church, it's important to be responsible with it, not just for your kids, but for others who may be watching as well. Put your phone on "do not disturb" mode to avoid being distracted by notifications and text messages, and be transparent about what you're using it for during the service. Like I said, there's nothing wrong with using the Bible on your phone at any time, but we want to be sure we're not being a stumbling block to another believer or an unbeliever by doing so. 

What kind of Bible do you use during church services? Do you prefer a physical Bible or a digital one?

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January 22, 1973

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!

48 years ago today on January 22nd, 1973, Roe v. Wade was decided.

35 years after that day, I gave birth to a beautiful baby girl.

Today, she turns 13, a privilege that 62 million children will never get.

If you're struggling, know that there is help and hope. Please call one of these numbers or visit the website. 

How to observe Sanctity of Life Day:

Recognize the value of every single life at every stage. Pro-life doesn't just refer to the unborn.
Be compassionate with those who are struggling.
Volunteer at a women's shelter or pregnancy crisis center.

Donate baby items, formula, diapers, etc.
Show the love of Christ to single mothers by serving and helping as He commands us.
Pray for expecting women and moms who may be in crisis

Find more ideas and practical suggestions here.

My Story of Being High-Risk with COVID-19

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!

It finally happened. 

After 10 months of caution and feeling like it was hanging over my head the entire time, I came down with COVID-19.

I have severe asthma that has nearly killed me many times. I also have Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. Generally speaking, I pick up just about every germ that I come across, and I get pretty sick. A common cold can put me on prednisone with serious breathing difficulties. In 2018 and 2019, I came down with Influenza A and was very sick for weeks each time. My lungs have never fully recovered from the bout in 2018. When I do finally start to recover from an illness, it takes a LONG time for me to get back to my baseline which, isn't very impressive to begin with thanks to my chronic illnesses. 

Before I go any farther, here's a brief description of the conditions I mentioned above:

Ehlers Danlos Syndrome (EDS): A connective tissue disorder that can cause hypermobility of the joints (what some people refer to incorrectly as "double jointed"), stretchy, fragile skin, gastrointestinal issues, and MUCH more. Connective tissue is the glue that holds a person's body together and when that is faulty, the body literally is falling apart from the inside. People with EDS often have the "trifecta" of EDS, POTS, and MCAS.

Postural Orthostatic Tachycardia Syndrome (POTS): POTS is a form of Dysautonomia which is a condition where the automatic functions of the body such as heart rate, blood pressure, temperature, digestion, etc. are essentially "out of whack" and don't operate properly.

Mast Cell Activation Syndrome (MCAS): Mast cells are what cause allergic reactions. For most people, they behave normally, but for people with MCAS, they're out of control, reacting to everything and nothing and causing repeated mild to severe anaphylaxis symptoms. When most people hear anaphylaxis, they picture someone with their throat closing up, but anaphylaxis can cause rapid pulse, low blood pressure, itching, hives, flushing, swelling, wheezing, difficulty breathing, abdominal cramping, diarrhea, and nausea. When I'm not on my treatment plan, I experience mild anaphylaxis symptoms multiple times a day, often with no known trigger, and more severe anaphylaxis several times a year. 

In addition to my asthma being a concern, my MCAS and POTS also made me think that I should really avoid catching COVID-19. Many patients who recover from COVID-19 end up with POTS-like symptoms for weeks or months after. Also, complications in COVID-19 are often attributed to the patient crashing due to a cytokine storm which involves an overreaction of mast cells (remember what I said about MCAS?). In fact, several of the medications and supplements I take regularly to help control my MCAS have been recommended for people with COVID-19.

So how did COVID-19 go for me? Overall, I would say surprising. I had heard that people with the virus have horrible coughs, sore throats, and high fevers. I had an extremely mild cough, a mild sore throat for one day, and only ran a fever twice that never got above 101 F. I did experience severe fatigue, body aches, a stuffy nose, and moderate breathing difficulties throughout the whole illness. I also intermittently experienced chills. 

On December 16th, I found out that someone I had been in contact with had tested positive for COVID-19. The next day, I started to feel sick and so the day after that, I went in to be tested. The next day (December 19), the results came back positive. I immediately quarantined myself in my room away from my family. On day four of being sick (December 20), my husband began to not feel well either. On day five (December 21), I lost my sense of taste and smell although it slowly came back 4-5 days later. My husband went in to get tested that day and the next day, his test came back positive as well and so he joined me in quarantine. Our kids are 12, 10, 8, and 6 and thankfully, were able to take care of themselves pretty well. They weren't allowed in my room and if Hubby or I left the room for any reason, we made sure that they didn't come near us. We were also very blessed that our family and friends dropped off meals for us so the kids didn't have to live on scrambled eggs, sandwiches, and macaroni and cheese the whole time. 

Hubby's fever mostly stayed above 100 for the first nine days of his illness, but thankfully let up after that. He never got as sick as me (of course. He's such a show-off) despite having a fever while I usually had none and was able to go back to work once his quarantine was up on January 1st. On December 25th, I spiked a fever during the night and felt very ill, but I think it was my body rallying and fighting the virus off as the next day, I finally started to feel like I was moving into the recovery stage after 9 days of severe body aches, fatigue so severe I could barely walk to the bathroom, a very stuffy nose, and headaches. My quarantine ended on December 27th, but I was still very weak and fatigued so I stayed in bed the rest of that week to let my body recover. Thankfully, none of the kids ever showed symptoms of being sick and after their quarantine ended on January 9th, they were able to go back to school.

Today is January 18, over a month after coming down with COVID-19, and I'm still not back to my baseline. I get fatigued very easily and my asthma is not under control as well as it normally is, but overall I'm happy with how I've recovered and the lack of complications while I was sick. Obviously, I know that not everyone's story of COVID-19 will be as good as mine. I have a number of friends and family who have also had it and several had life-threatening complications, but thankfully survived. 

Have you or someone you know had COVID-19? How did it go?