Our Family's Long-Haul COVID Story

It has been three months (plus one week) since I received my positive COVID-19 test. One-hundred-seven days since I first showed symptoms. It’s clear that the complications and setbacks I’m experiencing following COVID are not going anywhere soon.

The posts I’ve shared on Facebook and Instagram, I realize now, were not quick status updates, but rather, long-term health status updates. It’s also clear, if you read, listen to or watch the news on any given day that I am not alone in these complications and setbacks. So many people think that once a person is sick with COVID, there are two end-results. You either sadly succumb to the virus or you recover. This is what I thought. Until now. You guys, there is this big, huge gray area. This elephant in the room that needs to be talked about. We don’t know what we don’t know.

This is why I will bother. This is why I will take the time to do all this.

We don’t know what we don’t know. So, let’s learn. Let’s pool our knowledge and our resources. Let’s share our stories and our experiences. Let’s learn together.

How it started

Friday, November 13, 2020

We could really use your positive thoughts and prayers of protection.

Mason is quarantined in Mt. Pleasant after positive COVID exposure but thankfully a negative test. He has four more days of quarantine and finals immediately following. Ellie came home from school yesterday and is in isolation after testing positive. Thankfully, her symptoms have been manageable and we’re praying that continues. She is home for the semester and will complete finals remotely. I have several COVID symptoms. I’m quarantined at our house with Ellie, but safely separated. I’m awaiting test results. Mike and the twins have temporarily “re-located” for their quarantine period as they are all symptom-free at the moment.

This is challenging. This is scary. This is in His capable hands. But we sure wouldn’t mind those extra prayers on our behalf.

Saturday, November 14, 2020

Thank you so much for all of the thoughts and prayers for me and my crew.

Mike and the twins are still away from the house and symptom-free. Ellie is very achy and extremely tired. But…her breathing is mostly normal and she’s been fever-free for 48 hours. My results came back this evening and I’ve tested positive.

We will get through this.

Monday, November 16, 2020

Thank you for all of the kind messages checking in on us. Here’s our latest update:

Ellie had a tough day yesterday. But she said today is better. She’s still achy and tired, but that’s slowly improving. But her best news is she’s been fever-free for over three days! The twins are both still completely symptom-free and yet, both tested COVID positive. We are still waiting for Mike’s results.

I’m about to get real. If you want sugar-coated, “it’s just a bad cold,” you may want to move on. It’s not here. I also just realized in proofreading this that it is the most discombobulated, all-over, mixed-up thing I’ve ever written and shared. My mind, like everything else, is just so weary right now.

It’s been a really bad couple of days. My oxygen level is still acceptable, but is to a point where I need to be very diligent and attentive to what’s happening. I can’t do anything without tiring and feeling short-winded immediately. You know how when you step outside on a really cold day and the cold and wind just hit so hard and make breathing a challenge? That’s how every breath feels for me. Coughing is worse too, especially when I try to talk. If I lay or sit perfectly still and don’t talk, I might not end up in a coughing fit. I’m nauseous, but did get a little bit of soup down tonight. Thank you, Julie. And, the pain and the fatigue. Everything hurts: my nails, my teeth, even my hair. And I could sleep 16-18 hours every day and still be exhausted.

There have been lots of tears the last couple of days. It is so hard to be this sick and know that there is no one that can come in and help you… you’re on your own. I’ve never in my life been this sick. We continue to covet and treasure all of your prayers, your messages and your texts. Thank you, Kris, Danya, Michelle and mom for your helpful porch drops.

We will keep fighting. We will do the hard things. We will get through this.

Wednesday, November 18, 2020

Hope.

Thursday, November 19, 2020

As of yesterday afternoon, we’re all under the same roof again. Well, with the exception of Mason who is in Mt. Pleasant still where we’re wanting him to stay and stay healthy. Mike being able to come back home does mean he tested COVID positive, as well, but thankfully remains symptom-free. The twins did each lose their sense of taste and smell, but briefly, as they both say it’s starting to return. Other than that, they also remain symptom-free. Ellie continues to recover and is healthier and stronger every day. I remain about the same. I have not noticed a measurable difference with the steroid or antibiotic. But the inhaler does help and I’m so grateful for that!

Last night, my oxygen level was one number away from the threshold my doctor laid out for going to the ER. But I didn’t drop any lower.  The coughing is calm as long as I remain still. I’m still nauseous at times but did get a little bit of dinner down last night. Thanks, mom. Today, I’m too exhausted to even chew. Thank goodness for protein drinks.

Please, please, please do your best to do what is being asked of us collectively, as a community, to stop this when and where we can. We are experiencing firsthand how cruel and cunning this virus is. From barely any symptoms for some, to severe and frightening symptoms for others. Respect the virus, respect the science and respect all those around you.

Thank you for the sweet notes and messages. Thank you for helping feed and spoil my family with your porch drops and Venmo gifts. Thank you to everyone that continues to include us in your thoughts and prayers. We feel them sustaining us through this challenging time. What a gift it is to be loved and cared for by all of you.

Friday, November 20, 2020

The mental and emotional weight of all of this is feeling very heavy today. Nothing bad has happened and I’m stable, but for whatever reason…today is hard.

Monday, November 23, 2020

Ellie is getting stronger every day. She has a bit of a cough that comes and goes, but is on her way back to full health. The twins are good and still symptom-free. Mike has a cough, but he thinks it’s from working on our roof in the cold air. I’m hoping that if any of them were going to develop more severe symptoms, it would have happened by now.

I’m about the same, with a couple of small improvements. And today, day 15, I will take any small victories I can! My temp is staying just below 100 instead of just above 100, so that’s good! My oxygen levels are still acceptable in the low to mid-90s. They drop to 90-91 when I try to do anything. The inhaler is helpful during these times when I do struggle to breathe well. I feel like I’ve hit a plateau. I’m not getting worse, which I’m so grateful for. But I seem to be “stuck” where I am, not getting better, either. I’ve completed both my course of steroids and antibiotics. I have a call into my primary to see if there is anything else I can/should be doing.

This has been so hard and so scary. Tonight, I’m no longer afraid I won’t get better. I’m just working to accept I have a very long road ahead of me. It’s an uncomfortable feeling to be a writer without the right words. But my words would never do justice to all of the prayers, love and support you have covered us in. Thank you for loving on us.

Thursday, November 26, 2020

Happy Thanksgiving!

Mike, Ellie, Mabel and Bram have all finished their isolation period as of today without further complications or symptoms. We are so very grateful for this. I’m doing OK. My temperature is staying just under 100 and my oxygen is in the low to mid-90s. It does drop lower with any activity, but then eventually rebounds again. I talked with my primary on Tuesday. She said that we’re doing everything we can right now and went over the thresholds that would warrant going to the ER. She also said I have a very long road ahead of me.

Thank you so much for the surprise porch drops from everyone over the last few days. Thank you for your messages and your prayers. Thank you for your time, for taking a moment out of your busy days to check in on us. It is so generous, so thoughtful and so appreciated. With so much turmoil, divisiveness and uncertainty everywhere, we are beyond blessed to be on the receiving end of so much goodness.

In what has been one of the hardest and scariest times for us, we have been completely covered in love by this community. Thank you to each and every one of you for being a part of that and for loving on us.

Friday, November 27, 2020

What a weird day.

Ups and downs have me feeling a little like  .

For the first time in 19 days, my temperature is not within fever-range. I still can’t do very much at all, but…I did, in fact, heat up my own lunch today. That’s progress!

But then, after waking up early this morning in terrible pain, Ellie spent four hours in the ER today. After some IV fluids, IV pain meds and a CT scan, they determined she has a kidney stone. The doctor feels she can pass it on her own without further intervention and that it should be within the next 12ish hours.

So yay for progress, boo for kidney stones and go figure for 2020 keeping us all on our toes.

Tuesday, December 1, 2020

Mike, Ellie and the twins are back to healthy and back to normal routines. I am so grateful that, with the exception of two or three ugly days for Ellie, they all dealt with very few symptoms or issues from COVID.

I’m doing OK. I slept for 12 hours Sunday night and only woke up once. That felt great! My temp was below fever-range all day yesterday, not even rising in the evening as it has been. And I did a couple of very small tasks in the kitchen on Sunday afternoon. Those little glimpses of normal were much needed.

Because my reality is, today is COVID day 23 and there are no clear answers to any of the questions I have. No one knows if some of the lingering symptoms will ever go away or if they’re part of my new normal. And that’s hard, mentally and physically. I can’t take a really good deep breath without pain. I can’t do much of anything without my oxygen level dropping into the 80s. I have daily headaches. I still cough. A lot. I’m easily confused and I constantly feel like I’m one beat slow or one step behind everyone else. Ev.e.ry.thing. hurts and I’m so, so tired. But those little victories?! They are the best. They keep me fighting. And, I’ll take every one of those I can get!

Thank you. Thank you for the thoughtful notes and messages you’ve sent. Thank you for continuing to check in on us. Thank you for your offer of help. And thank you for your prayers, love and support that sustains us every day. We continue, even amidst our struggles, to be blessed!

Tuesday, December 8, 2020

Today is day 31 since my symptoms began and day 28 since my COVID-positive test, and I think I’ve finally turned a corner!

My temperature has stayed out of fever-range, even at night, for several days now. My oxygen level still goes down with any activity, but when I stop, my level is rebounding a little bit quicker every day. I can interact in conversations a little bit longer each day before I begin coughing and having trouble breathing. I’ve been able to, slowly, do a few small tasks around the house each day. Win. Win. Win.

I’m still so very tired all day, every day. My focus and concentration are scattered, but I don’t know where the line for COVID ends and Parkinson’s begins on that. My entire body doesn’t ache as much as it did, but my chest is very, very sore, especially when I cough, yawn or try to sneak in just one good, deep breath. It will be a while before we know how much of the damage to my lungs is reversible and how much is permanent. But I am finally taking steps in the right direction. And that is not insignificant or small!

Every thought and every prayer that continues to be sent my way is so treasured. COVID is scary. It is a very isolating and lonely illness. Each e-mail, each message, each porch drop is a lifeline. Thank you all for being my lifeline.

Wednesday, January 6, 2021

You all sure know how to make a girl feel loved and cared for. I’ve gotten so many kind and thoughtful messages checking in during and following the holidays. Thank you so much to everyone that has reached out.

I’m recovered from the initial COVID infection itself, but I have what they consider Long-COVID. Today is day 60 since my first symptoms began. 60 days. I’m, right now, in the midst of my second “relapse” since I was “officially” considered COVID-free. Many of my COVID symptoms are still present each day, but during a relapse, everything worsens. My cough amps back up again. The fatigue that has never really gone away escalates. My fever returns. My oxygen levels go back down and I struggle to breathe. At times, I feel such a state of fogginess and confusion.

This could be Long-COVID. This could be Parkinson’s. It’s likely both. With each relapse, I’m basically back to where I was, just not contagious. My doctor said that my immune system was so very compromised to begin with. COVID compromised it even further. Combining that with only being able to sleep about three hours a night, it’s the perfect set-up for triggering these relapses. She also feels this is probably going to continue to happen quite often over the next several months, most likely even longer. It will be a long time before anyone can know the full extent of the permanent damage COVID has caused.

We don’t know what we don’t know. Continue to seek factual information. Please, please, please continue to listen to the scientists and the doctors. Continue to do everything you can to protect yourself and others.

And most of all, continue to be kind…to yourself and to one another.

What’s Next…

So, there. Now it’s all in one spot. The words and the content belong to me. And so does the fight.

I don’t want the fight. I don’t feel like fighting. I’m tired. But…fight, I will.

Follow this journey on Just Shake It Off