5+ Years In -- A (Long) Long Covid Update

I’ve been thinking about, and chipping away, at this post for a bit. There’s a lot to unpack, and that tends to be a non-linear (and, clearly, not a concise) process. 

I’m thinking how surreal it is that I passed this 5 yr mark. And that I really really hope that I will not be doing a post about Long Covid, 10 yrs in. 

I’ve had a few people ask me why I haven’t written about it lately. It’s partly because I assume people are tired of me talking about it. I’m weary of hearing myself talk about it. And although, by wiring, I am A Talker, or as my brother-in-law Tom compassionately terms it, “a verbal processor”, I actually don’t like to talk about Long Covid very much.

Some of that is due to my inner wrestle with the fact that Long Covid is not my identity, and yet it has created a dramatic upheaval in my life, affecting every single day.  I believe that culture can sometimes celebrate victimhood in an unhealthy way, and I stubbornly refuse to slap that nametag on. As I’ve said before, we all have our HARD THINGS. Some are just more visible than others.

I’m also cautious because so much of covid has been politicized. I regularly converse with people who genuinely think my symptoms are simply a result of either a) getting older (“we’re all tired”); b) deconditioning; c) poor nutrition or, closely related, not using a particular supplement; d) in my head/emotional or mental distress; e) being taken in by bad actors who are now flooding the world with misinformation to exaggerate the scope and severity of illness.

And here’s the thing. Almost all of those opinions have some merit. I am older. I am deconditioned. And I certainly can improve in “clean eating”. I sometimes do feel anxious or blue about my health crap. And I don’t know, really, how Covid was unleashed on the world. Yes, I’ve read quite a bit about it. But ultimately my reality is that it happened and I’d rather spend the energy figuring out how to tame the beast rather than dwelling on its origin story.

So while I recognize everyone almost always means well, and they have very valid reasons behind their particular opinions, it is sometimes difficult and lonely to have this big huge challenging thing in my life and yet not feel understood nor believed, nor even able to clearly verbalize all of the facets and impacts.

Luckily, Chad and my kids get it, and they could not be more supportive. I feel extremely lucky that way. (Thanks guys!)

With that lengthy detour into introspection, in honor of having passed the 5 yr mark, here’s the (Long) Long Covid rundown.

I’ve improved. Not dramatically, but noticeably. After a long time of feeling like the needle was barely budging, or that it just kept swinging back and forth, I can honestly say that I am in a stronger place today than I was a year ago. So that’s something.

But I just can’t get into a steady climb. I was doing well early summer, and then came home from Europe with a reinfection of Covid. It set me back several months, although I’ve heard of it doing much worse.

I am well enough to participate more in life. With pacing, I can do the basics of going to work, housekeeping, laundry, shopping, socializing, etc. But the ongoing lesson of Covid is that I’m not in control. I can make plans, but there’s a much higher likelihood today vs. pre-covid that they will be postponed or scrapped altogether. For an impatient, social and naturally active human like me, this is incredibly frustrating.

The holidays were indicative of how crazy-making this chronic illness is. I had all sorts of plans for Christmas Eve and Christmas Day. I love gathering with my loved ones and often make bigger-than-necessary plans for celebrating. I’m also a “The More The Merrier” type of person, and I probably don’t delegate enough, which is on me.

But as Christmas drew nearer, I felt worse and worse. And thus Christmas Eve found me, not at the Candlelight Service we’d planned to attend, but lying on the living room floor while Annie sang Christmas carols to me. (Thanks Annie!) Then lurking silently in the background as family & friends enjoyed our holiday feasts, played games, watched shows, etc. But at least I wasn’t confined to bed.  

Frequently, when I overdo, I get into what they call a “crash” or post-exertional-malaise (look it up). This is not a “wow, I’m so sore from exercising” or “wow, I’m completely worn out from yesterday” type of deal. It usually hits 24-48 hrs later. It feels like the Flu, with similar symptoms, and even, as in this latest Extra Fun Holiday bout, vomiting and nausea. Basically, you feel sick. (I always wonder at first whether I’ve simply picked up a virus. But time usually sorts out which is which.) 

It sounds made up. And I sincerely wish it were.

The crazy thing is a PEM crash is usually tied to absolutely ridiculous things that you would never think of as “overdoing”. Often it’s combining too much exertion in a day, like going grocery shopping and trying to exercise on the same day. Or cooking a big meal, and then going to a wedding reception, where you stood around talking to people for awhile. Like I said… ridiculous. But it’s my reality.

For the first 53 years of my life, when I lost some fitness level, whether through injury or a new baby or an illness, I simply buckled down and did the work to build back up. I started small and gradually increased intensity and time. It wasn’t easy, but it worked consistently. 

Long Covid blasted that tried-and-true cause and effect to shreds. 

So I’m still trying to figure out the magical balance of how to push myself enough for improvement, without crashing. But one Win for the year is that generally speaking, I can do slightly more, for more days in a row, than I used to be able to, without a crash. So that’s something.

Oxygen levels have gotten better although they are still sometimes problematic. Our YSA ward had a church meeting recently where most of it was singing. I tried to sing but about 10 min in got really dizzy and winded. So then I tried to sing softly - we were worshipping through music, and I wanted to be a part of it. Then I just mouthed the words. But that little 30 minute meeting threw my o2 off for the rest of the week. After trying a bunch of deep breathing exercises, I went home and hooked up to my o2 concentrator, and even after 2 separate 30 min sessions of supplemental oxygen, my o2 only went up to 92. I still felt pretty crappy. And for a week after that, I’d feel crummy and then measure and sure enough, I was below 90. 

Ridiculous.

But on the bright side, several years ago, I didn’t have the breath to sing more than a phrase or two. So there has been improvement. 

Sometimes my o2 drops due to exertion or a virus, and sometimes I have no idea why it’s dropped. One thing that consistently and predictably affects it is elevation. Just driving up in the canyon near my home, I can wear my oximeter and watch levels drop, the higher I go. And conversely, I typically feel really good at sea level and always have great saturation numbers while there.

Case in point - last summer we took our family for a little “staycation” up to Solitude Ski Resort, about 40 min from my house. It is in the mountains at about 8000 ft above sea level. We’d rented a beautiful vacation home with incredible views, and I was reminded that being up in the mountains makes my heart happy. Unfortunately, I was also reminded it makes my body unhappy. My o2 was in the mid 80’s pretty much the whole time, and I felt absolutely horrid. 

When we were leaving, my o2 was at 85. Then we drove straight to St. George, which is a much lower elevation, at only 2700 ft above sea level. Within 4 ½ hours of travel to this lower elevation, my oxygen was back up to 95. And I was feeling much better.

This response is pretty typical, and has impacted my ability to enjoy my beloved, beautiful backyard mountains.

But again, overall, my oxygen is better than it used to be.

My POTS and dizziness have improved too, as long as I am not doing a lot of up and down. Gardening, yoga, and even picking up the dog poop are things that still tend to trigger it. But I no longer have to steady myself on a wall as I walk. 

As mentioned, while I can take care of myself and do a semi-normal daily grind, I have not been able to incorporate much extracurricular exercise back into my life. I have tried. I will keep trying. But so far, even with the help of my doctor and a physical therapist, we have not been able to figure it out. This makes me so sad. 

A few weeks ago we were at a YSA activity and someone asked me, “What are your hobbies?” I sat there, quiet. They followed up with, “Y’know, like what are your favorite activities to do?” For 50 years of my life, those answers were easy. Before Covid, I would have rattled off, “Hiking, bicycling, exercise, walking, skiing, pilates, traveling” and so on. But I sat there searching for still intact hobbies, and my eyes filled with tears. I grieve those things. It feels like a loss of identity. 

Chad picked up where my mind was going, and suggested, “You like to travel. Or what about reading? Or baking?” And I do like those things (baking needs to be on a Good Day of course). But I guess I may need to find some new hobbies. 

The word that keeps coming up in this journey is “BALANCE”. 

Trying to balance:

• Life’s demands with my greater need for rest (I realize EVERYONE is striving to balance this.)

• Pushing enough to improve and not taking an easy out, with meeting my body where it is & being patient with myself

• Looking outside of myself, with self care

• Acceptance & peace, with not giving up

That’s the tricky part here. I’ve stubbornly refused to say, “this is a chronic illness and this is my life now”.  I have PLANS, people! 

So I haven’t made peace with it.

But kicking against the pricks isn’t helpful, and as my frequent PEM crashes have shown, I can’t just push myself through this via discipline and PMA. 

I’ve participated in various research studies since being diagnosed with Long Covid. In fact, I’m in 2 studies right now. They test my blood regularly, and also take my saliva and urine occasionally. And I have to take incredibly lengthy surveys. Whenever the survey asks me to rate if I think I will get better, I always mark the highest “Yes” answer. So I guess there is still a part of me determined to claw my way through this. 

But 5 years just seems like a long time. It’s a hard milestone to hit.

What I *want*, is to find the place that perfectly balances Hope with Acceptance. Faith with Submissiveness. Optimism with Clear Eyes. Grit with Humility. Meekness with Tenacity. 

I’ve thought a lot about this. And from my observation, that beautiful balance appears to be God-given, in a rare and distinctive melding of Grace and Choice.

I can think of two particular times I have seen it modeled. And both times were with cousins. 

When my cousin Paul was waiting for his heart transplant, bed-ridden in the hospital, and so very, very ill and weak, I remember going to visit him. I was deeply moved as I talked with Paul and his wife. They spoke openly about the situation. They were realistic about the odds, yet voiced their belief in a God of Miracles. They appeared to be incredibly courageous and yet completely and totally submissive to God’s will. 

I saw that same stunning, take-your-breath-away balance with my cousin David, when his wife Julie was in the hospital, battling for her life. Julie had cystic fibrosis, and while a lung transplant had gifted her a few more years, things were now going downhill. David B. and Julie exhibited incredible tenacity and strength as they fought, kicking and clawing, to save her life. They left it all on the field, giving everything they had to the effort. They also actively chose faith. Rather than shaking their fists at God, they knelt at His feet. They expressed a childlike acknowledgement that God was in control, and that ultimately, all of our lives are in His hands.

Saying “Thy Will Be Done” when you are desperate for a specific outcome is brutally difficult.    

In Paul’s case, his life was spared. And David’s wife passed away.

Even though I’m not dying, I want to channel that elegant balance (there's that word again) that my cousins modeled. 

I want to do what I can to improve my health, while rejoicing in my body and life today. Because life is so very good.

I want to trust God. 

I want to feel less frustration and self doubt with my limitations. 

I want to complain less.

And sometimes, I just want to sleep.

In the words of C.S. Lewis, (or as I refer to him, my BFF-CS), “So I am, you see, one of God’s patients, not yet cured. I know there are not only tears [yet] to be dried but stains [yet] to be scoured.”

Long Covid is a beast. But I’ve slashed off a few scales. So that’s something. 

And although they haven’t found the “cure” yet, researchers are making progress in their understanding of Long covid and its mitochondrial dysfunction. I hope by participating in these various studies and donating blood like a starving college student, I can do my small part to help science figure this out.

Until then... “It does not matter how slowly you go as long as you do not stop” (Confucius).

Mom Security

Several months ago, my college-aged daughter Annie hosted a little get together. She was leaving for an internship in another state for several months. So she invited her friends from Divine Comedy, a BYU sketch comedy group, to our home. 

While she was entertaining her friends, Chad and I were entertaining our 2 1/2 year old grandson, Aiden. Morgan and his wife Jessica were on a much needed date. Aiden is A Man On The Move. He burned through all of our toys pretty quickly. It was still light outside, so Chad and I decided to take him outside to play. Let him run off a bit of steam. 

We started looking for his jacket. And figured it was probably in the diaper bag. 

Here I need to shift into a geriatric Back In My Day anecdote. One of the great scientific advancements of the past two decades are... wait for it... Diaper Bags.

Diaper Bags are SO MUCH COOLER nowadays. Leather, canvas, hipster looking things that could easily pass for holding something much different than burp pads, diapers, wipes, Butt Paste, etc. 

Back in the day, there were not a lot of options. Ninety percent of diaper bags were vinyl plastic washable tote bags in either pink, light blue, or green. No other options. They sported bunnies and chicks. They almost all looked the same. The remaining 10% were quilted cloth bags that some crafty mother had sewn by hand. I was in the vinyl category, having come up with the short straw in the anything-that-requires-a-bobbin department. 

But due to the incredible technological breakthroughs of the 21st century, there is nary a bunny on the most excellent diaper bags of today. Which brings me back to the story.

Chad and I were looking for where Jessica had left her Cool Kid diaper bag backpack. I went into the kitchen where Annie and friends were eating and socializing. Trying to be unobtrusive and not That Mom. 

I found the diaper bag on the kitchen table, grabbed it, and took it into our living room, where Chad and Aiden were waiting. I started digging through it. At the top, it seemed to mostly be clothing. It didn't strike me as odd that there were no diapers, wipes ... I simply figured they were buried. I pulled out a shirt, and then a jacket. I held it up, "Here we go". 

But then we noticed it was not an Aiden-sized jacket. It was an adult-sized hoodie.

At that point, Truman, a friend of Annie's whom we had never met before that night, rounded the corner and entered the living room. He grabbed the jacket from me and said "That's my jacket." And then grabbed the backpack with a terse, "That's my backpack." 

We had mistaken his backpack for the diaper bag. 

All he knew was he saw me come into the kitchen, select his backpack from the table, and take it into the next room. He decided it might be a good idea to follow, and came upon us as I was crouched over his open backpack, holding up his jacket.

Chad and I laughed and I explained my mistake.

"Oh," he said with a bit of relief. "That makes more sense. I just thought you had some sort of Mom Security thing going on."

Luckily, my kids did not and still do not require the type of Mom Security that requires TSA-level searching of all bags. I'm truly grateful for that. But Truman did keep a pretty sharp eye on his bags from that point on. And for just a moment, I was a little nostalgic for pastel vinyl bunnies.

Shopping with Toddlers and Other Tales of Horror

Our attempt at family photos, back in the day.
(And yes, The Hair... I know... not in the running for "Who Wore It Best"....
It seemed like a good idea at the time. So let this be an important reminder
that "Just because everyone else is doing it, doesn't mean it's a good idea.")

 

I recently told my daughter that my version of "I Had To Walk Uphill Both Ways, In The Snow, Every Day to School" sob story / mark of honor is, "I Took All Three Kids INSIDE The Store. Every Week. With No Curbside Checkout or Online Shopping."

Oh how I wish curbside checkout would've been a thing, Back In The Day. I would have been all over it. Chad was home so little when we had Littles that I typically had the choice of either: 1) shopping really late at night without kids, only to find myself in the Frozen Food aisle, vaguely staring at the offerings, and not sure why I was there or what I needed; OR 2) taking the kids with me to the store, which all too often involved crying. Them, or more often, Me. 

The grocery store and Target were difficult enough. But the hardest stores by far were those that were staffed by elderly ladies. Feel free to accuse me of ageism, but it seemed like if an older grandma type was at the register, she usually would quickly descend on me and my kids with the ferocity of a mama bear protecting her cubs. One would think that these women would be cooing at my adorable children, but instead they were usually lecturing me on Please Do Not Let Your Children Touch ANYTHING. These women were terrifying. They also seemed to forget that I was there standing before them with the express purpose of handing them money.

One store visit in particular stands out. It was at a fabric store, and I was buying supplies for some sort of a Have To costume. (Perhaps tied to my questionable decision to put Aerin in dance lessons at age 2 1/2 yrs?) This local fabric store closed before Chad usually got home from work, so I had to go during the daytime, kids in tow. Morgan was in a carrier, but old enough to be heavy. So I'm going to guess he was 1 and Aerin was 3, give or take a few months. 

The tricky part was, I had Morgan in the carrier in one hand, or alternately looped in the crook of my arm. I had my purse on the other side, and also was trying to hold Aerin's hand. Whenever I had to let go of her hand, she immediately took off like an Olympic sprinter. 

During this time of parenthood, I had a friend who told me (with an air of "What in the WORLD is so difficult?"), and I quote, "Whenever we go to any store, I simply tell my child to put their hands in their pockets and stay by me." Which apparently worked like a charm with her compliant child, but was sort of like me telling my 3-yr old Aerin, "I'd like you to run a sales tax report and do a complete inventory report of stock while we are here at the store." It was not even remotely possible. 

Instead, Aerin liked to play a game called, "LET ME RUN AND HIDE FROM MY MOTHER! ISN'T THIS FUN??" So while I was looking at the fabric bolts, she kept hiding underneath the round wagon wheel displays of fabric. Luckily, she typically giggled as she hid, so I could find her and drag her out, lecturing her with a touch of exhaustion. And ignoring the dagger eyes from the store clerks.

(I know what you're thinking here..."If that were my child...." So let's address that right now. I'm sure you would have parented much, much better than I did. Not only in this moment, but probably always. But in my defense, did I mention the whole exhaustion thing?)

After grabbing one huge bolt of fabric that was a possibility for our need, and hauling that around, still while holding the heavy baby carrier and repeatedly retrieving my 3 yr old from her various hiding places, I just desperately wanted to get out of there and to the blessed peace of children-safely-and-securely-buckled-in-car-seats. But we still needed ribbon.

Unfortunately, this store had a great abundance of ribbon. And it wasn't ribbon encased in plastic. It was rows and rows of spools of ribbon, which could be cut in the amount needed. As I started to look for the right color of ribbon, Aerin decided that an even FUNNER game than "Hiding From Mom" consisted of taking both of her small hands, and furiously spinning the spools so that ribbons were unraveling at light speed. 

She was surprisingly adept at this game. 

It was way past time to Tap Out and throw in the white flag, but for a now forgotten (PTSD-Blocked, perhaps?) reason, I had to buy my stuff this very day. So I desperately tried to reprimand my 3 yr old, while rolling back up the spools, and placing the huge fabric thing and Morgan on the ground. Which again prompted icy daggers from the store clerk. (Because of The Fabric. Not the baby.) 

I started to feel a little sick and realized that to complicate matters, I really needed to use the restroom. And no, it could not wait. So I left my fabric, and hauled both children INTO the cramped stall with me and sat down on the toilet. I talked to both kids as I multitasked and took care of business. But within 30 seconds or so, Aerin had dropped to the floor, and army crawled under the partition to the next stall. Fortunately, no one appeared to be in the stall. At least there were no screams. Other than my own frantic yelling, "AERIN! GET BACK HERE! AERIN, COME TO MOMMY RIGHT NOW! AERIN!" 

But unfortunately, I was still multitasking and truly could not get off the toilet. If you get my drift. 

Then I heard a terrible sound. A sound that filled me with horror.

Splashing. And giggles. From the next stall.

"AERIN! STOP THAT THIS INSTANT! GET AWAY FROM THE TOILET, RIGHT NOW!" I used my Meanest Outside Voice possible, touched with a bit of hysteria. "I MEAN IT! NOW!"

More giggles. More splashing.

It was the most helpless feeling in the world. 

Finally, I finished my business, and stormed out of the stall, still pulling up my pants, roughly grabbed Aerin from the other stall, hauled her to the sink, and washed her, fingers to shoulders, with tons of soap. Morgan, in the meantime, still sat in the carrier, by himself, in the stall. I was violently scrubbing Aerin's arms while still lecturing and threatening in My Outside Voice, when another woman came out of a third stall, laughing. She had heard everything. 

I don't remember if she spoke to me. The humiliation was swallowing me at this point. 

And that's when I truly did Call It. I picked up my children, and walked out of the fabric store. Leaving the fabric sitting out, the ribbons unspooled, and quite a lot of soapy water on the bathroom floor. 

Shockingly, the world did not stop turning even though I hadn't made my "absolutely-essential" purchase. I do remember that I didn't return to the store. Ever. But I genuinely can't recall how or where I bought the all-important costume supplies. And how it was that life went on as normal.

It took a few weeks, but eventually I was able to laugh about the ridiculous futility of the entire event. The story has now become Family Legend. And my daughter Aerin turned into an absolutely lovely, incredible adult. She is still playful, active, adventurous, and enjoys teasing the dog and her siblings. But she is also kind, wise, disciplined, respectful, and beautiful in every way. 

In fact, nowadays I can take her anywhere. Even to fabric stores. 

So many difficulties in life are simply solved with time. We grow, our children grow, and things have a way of working out. But in the moment, with unraveled ribbons and toilet-water-hands, it seems very very Big.

It just makes me wonder... what are today's Fabric Store moments, that I will find humor in tomorrow? What am I hyperventilating about that I will eventually hysterically laugh about, with time and distance and perspective? (And possibly, a bit of therapy?)

It's something to try to keep in mind. 

And P.S., I'm also reminded how very difficult it is to be a young mother. Even with Curbside Checkout and Online Shopping. So if you happen to be in the parenting trenches, give yourself a big hug from me. 

Just don't ask me to take your children to the fabric store. 

Better vs better. (Long Covid, 38 Months In)

 A few weeks ago, I was able to go to The International Surfaces Event. This is the biggest tradeshow in flooring each year, held on the Vegas Strip. The Strip is one of my least favorite places in the world (Don't get me started on Their Astounding Lack of Efficiency), but I was giddy to be there. I hadn't attended this tradeshow since January 2020. It always requires miles & miles of walking and hours & hours of standing, and I just couldn't do it, after getting Long Covid. But this year, I was able to go. Granted, I did the Geriatric Version of Surfaces. And each day got a bit more difficult. But still, I was able to do it. And that was a huge deal. Simply because it was a measurable, tangible mark of progress. And it felt so wonderful to have that.

I was also deeply touched by those who were celebrating this little victory with me.

I am not Better, as far as being anywhere close to my pre-Covid baseline. But I am better than I was a year ago, and much better than I was two and three years ago. And that gives me hope, that I can continue to progress and get better, until I am Better. If you know what I mean.

I started a new test medication combination (an anti-inflammatory drug + an antiviral drug) that performed well in a research study done a year ago. They are conducting a new larger double-blind study on it right now. I'm not part of that study, but am trying out the medicine. I'm told that it takes about two months to know if it is helping, and I'm about one month in. So far I don't feel a difference. But I am hopeful that I will. 

In the past 18 months, I've been part of 2 other medication research studies. For one, I was in the "control group", and for the other, I got the real thing. (Fun Fact: I hate being in the "control group".)  

HERE'S THE BORING MEDICAL PART. People ask about my symptoms. So if you're interested, keep reading. If not, skip this part, and scan to the bottom. (It will NOT be on the written exam.)

I've explained this before, but as I start to launch into everything, there still remains a part of me that feels sheepish, overly sensitive to the fact that I sound a bit like a hypochondriac, and gearing up for well meaning but common questions, like whether I'm sure it wasn't the vaccine (A: Yes.).  

Some people ask me if I'm sure my symptoms aren't simply due to getting older ("We're all tired!"), or the deconditioning that has occurred as a result ("You just need a good long walk outside in the fresh air."). I think that those things must factor in somehow into the mess, but the reality is, my continuing issues, typed out, will appear in every credible medical document and study about the disease. (Feel free to google at will.)

Some symptoms have improved, thankfully, but each improvement has occurred separately, and not from one single pill or regimen. Most everything boils down to the fact that Long Covid triggered a massive freakout in my system that made automatic functions like breathing, oxygen saturation, circulation and blood delivery wacked out. My mitochondria are underperforming, and doctors aren't quite sure why. Blood tests show that mono/EBV is in my system, which aligns with one theory that these latent viruses are reactivated somehow through Long Covid. (Fun Fact: I never knew I'd had mono. My mom's philosophy of "only go to the doctor if you are bleeding uncontrollably or a limb is hanging at an all new angle" carried over to me, and before Long Covid, I typically just tried to ride everything out.)

But, again for those interested, here's what seems to have helped:

Respiratory -- I struggled with low o2 saturation, and had supplemental oxygen for 9 months. I'm doing much better now, but still have a sensitivity response where catching a cold or going to a high(er) elevation can quickly throw me back down into the 80's. Most of the time now, o2 is happily 90+, and even can get into the high 90s. I still don't have the breath to sing an entire song, but I can sing a verse, sometimes two. (Singing in tune is a completely different matter.) What seemed to aid improvement with this is that I went to a breathing & voice specialist at the U of U Medical Center. She had me do exercises that seemed to eventually help my muscle memory "remember" how to breathe more deeply. I really should still be doing the exercises daily, but as I've improved, I've gotten a bit lazy with my regimen. I need to get back to it. 

Ironically, I find that I sometimes miss my home oxygen machine. Isn't that funny? It was a way to plug in and feel better relatively quickly, rather than having to do the work of Deep Breathing.

Dizziness - Several factors here but biggest was POTS, and the best help for this has been wearing compression socks and/or tanks, drinking lots of water, and a med called metoprolol (sp?). I still really struggle at events that require long periods of standing (parties, receptions, viewings, tradeshows, etc.) Standing is much, much harder than walking. I thought it was just me, but my doctor explained it has to do with the fact that walking helps pump the blood and oxygen up as I move, whereas with standing, everything just drops and stays there. 

Neurological - I have tinnitus and numbness less often than I did. I do still get brain fog, but that's one of the "is this age? hormones? or long covid?" things. I hear really sad stories of Long Covid patients whose brain fog is so bad that they can no longer work, drive, shop, etc. Fortunately, mine has not been at that level. Or if it is, someone needs to tell me, because I'm completely oblivious to it. 

Fatigue and PEM crashes - I'm often asked what a "crash" feels like. After overexertion, (typically physical but can even be after intense emotional or mental strain), I feel like I get hit with the flu. Not like the stomach flu. The "Influenza A - every part of my body is aching, I can barely get out of bed, sore throat kind of flu". When it hits, I'm always wondering if I picked up an extra virus or flu bug, or if it's a Crash. But there are patterns that I can usually identify. Here's an article about this, if you're interested.

 As part of a research study last August & September, I started taking something called oxaloacetate (sp?) and I feel like it helps a bit with fatigue. Crashes seem to not hit as often and last a shorter amount of time. Perhaps it's in my head. But it seems to help. The problem is, the medicine is horribly expensive, even with my clinic's discount code. But I still take it, because I think (??) it is helping.  

As I have mentioned before, while not life-threatening, the fatigue and PEM have been hands down the hardest symptoms to manage. But after 50+ years of being a Go-er, I am clumsily learning to "Pace" and to be gentle with myself.

Whether intended or not, I've realized that growing up, I absorbed the message from my depression-era grandparents and hard-working parents that laziness was an unforgiveable character flaw. As an adult, that meant subconsciously I never felt "down time" was justified. It has been challenging to reconcile my new (or at least newly recognized) need for rest and a slower pace with the crusty Inner Coach in my Head, who impatiently hollers, "C'mon! Get Going! Quit Being a Wuss!"  

Turns out, I had to learn to forgive my body for being weak and frail. This took time. Actually, I'm still working at it. 

I also have this frenetic side of me that wants to try every diet, medicine, vitamin, holistic regimen, physical therapy, or advice of any nature that anyone and everyone suggests might help. Because I do desperately want to get Better. But I've also learned through trial and error that I have to do one thing at a time, slowly. Otherwise, all of the results get muddied together and it actually takes longer to figure out if it's helping or not. 

All of this requires patience. And by nature, I'm anything but. So I have to tell myself to Chill, quite regularly. which brings me to my:

SPIRITUAL TAKEAWAYS - There is no question that I have been learning lessons from God along the way. It's difficult to explain, but I can feel Him changing my heart, little by little. I feel closer to Him. I feel His love and presence in a less diluted way. 

I had a beautiful, uplifting conversation a few weeks ago with an amazing friend who has been on her own journey. We talked about the difference in having a transactional relationship with Jesus Christ, versus a deeper, covenant relationship with Him, and what that looked like. 

The first year or two of Long Covid, once it became apparent that this disease was not going away and in fact was creating a chaotic and terrifying symphony of misfires throughout my body, I turned to the Lord. I prayed and pleaded for guidance, with great sincerity and intent. I felt like I was lost in the woods, not knowing where to go and which path to take. But I knew He understood the complexities of this illness, even if doctors and specialists did not. I desperately needed His wisdom and guidance. If I could just follow Him, He'd show me the way out of this miserable and dark and confusing place. So I sought to draw near to Him, so I could better discern which direction to go.

Then, over time, things evolved. I saw Long Covid as a daunting mountain that I had to summit. We all have them, and this was mine. I yearned to make it to the top and see the vista below me. I wanted and needed God's help to have the strength and stamina to conquer this gnarly mountain in my life. He is the Master Healer, and I knew He could help me, if it was His will. I sought Him sincerely, because I needed His strength. 

But I think in both of those cases, although I didn't realize it, I was seeking a Transactional Relationship with God. If I could walk alongside Him, He would do this or that for me. It was part of The Deal.

I do not believe that it is wrong to turn to God for direction and discernment, strength and endurance. In fact, I believe He is always pleased when we search Him out, regardless of our reasons why. But my relationship with God has changed through this experience. As I said, it's a little hard to put into words. But I guess the best way to summarize is that I have slowly shifted from seeking His blessings to seeking Him. 

Now, I simply want to walk with Him. Even if it's wandering in circles through a forest. Even if I'm still near the bottom of the mountain. Even if my oximeter is at 86 and my entire body aches and my limbs feel like they weigh 1000 lbs. Having Him by my side is enough. 

It really is.

Because feeling Him near; feeling His love, grace and peace; feeling His gentle tutoring as I strive to become a more earnest and devoted follower of Him -- that makes everything Better. In the very best of ways.

 

Magic.

Today was Christmas. It was a wonderful, relaxing day that even included a nap. Naps didn't come easy when my children were younger. 

This Christmas, we were able to get wonderful gifts for each other and our children, without gut-wrenching worry over each dime spent. But today I was also remembering a Christmas of years past, when money was extremely tight. 

The flooring industry had taken a hit with 9/11, and our fledging software company had absorbed that downturn, with very few sales and not enough maintenance fees to hold us over. Things were very, very tight. We had not had much of a paycheck for months. And at the time, I was working doing marketing for our company but not getting paid. (In that it was counterintuitive to building a financially stable business if we both took paychecks at that time.) So I couldn't supplement our income.

As December approached, I was really worried about presents for my children. I had a pit in my stomach all month long. While they were not particularly greedy nor materialistic, they were at an age when they believed in "the magic of Christmas", and in the power of Santa to bring them whatever toy they asked for. And while I understood that money and presents do not buy happiness, I felt weighed down by stress and worry. 

If I remember correctly, this was our first winter of Chad serving as bishop. He and I have wondered, in retrospect, if this experience was to give him an extra measure of compassion and empathy for ward members going through difficult financial trials. 

And despite the anxiety, small but significant blessings came. Annie's sweet preschool teacher Mrs. Goose offered to let her continue to attend, and told us not to worry about her tuition until we got a paycheck.  We had enough food. We somehow could pay our house payment. Everyone was relatively healthy. But we were basically living off our credit card, which was terrifying and risky.

But it ended up being such a beautiful, memorable Christmas. 

We were blessed with many sweet acts of service that year. There were so many tender mercies. But one I remember in particular was that someone (or a group of someones, most likely) did a Twelve Days of Christmas for us. Each night, we would receive a gift at our doorstep. Thoughtful, funny, and creative little gifts or treats, that warmed our hearts each night. My kids absolutely loved it, and were so excited each night to find the gifts. 

At the end of the 12 days, we were given an envelope filled with cash. I can't remember how much it was, but I do remember it was a significant amount of money. And I remember that both Chad and I just cried. 

I'd worried about missing the magic of Christmas, with our stringent budget. But have realized since that THIS was the magic of Christmas. Feeling God's love through the kind acts of others. Sharing love with one another. Strengthening the feeble knees. Serving and giving without recognition. Pulling others to their feet and putting an arm around them, to rejoice in the birth of our Savior, together. 

Christmas angels appeared amidst our heavy, dark night that year. They helped us feel seen, supported, and loved. It was extremely humbling.   

And it was truly magical. 

Learning Humility By Force (also known as Parenting)

Before I was a parent, I thought I was a patient person. I was wrong.

For me, motherhood has been the most amazing, most rewarding, greatest generator of joy in my life (besides Jesus Christ, of course), and 10/10 the most humbling thing I have ever experienced. I so often felt (feel?) like a large lump of a rock, that God was chiseling, bit by bit, to try to uncover the daughter He knew was in there and the parent He knew I could be. News flash -- this did not feel pleasant nor comfortable.  

Luckily, I have been blessed with absolutely incredible kids who were resilient despite a mother who made all sorts of mistakes. 

I have an embarrassing confession to make. When I was something like 3 weeks pregnant with my first child, and thus an Expert on all things related to motherhood, I smugly said to my husband, "I don't think I will get morning sickness. Because I'm a healthy person, and not one of those drama queens who have to 'take to their bed' with a migraine every few weeks."  Well, God heard that, and decided I needed a bit of a lesson in empathy and judging others. I had terrible morning sickness throughout my pregnancies. And, just in case I hadn't learned my lesson, later in life He allowed me to experience debilitating migraines, just for good measure.

That pattern has repeated itself throughout my entire parenting career.

I was NEVER going to talk baby talk. And that lasted until Aerin, my first, was about 15 seconds old. 

I was NEVER going to be overprotective. But then I quickly spiraled into a complete meltdown when my three day old baby was exposed to chicken pox. I called the doctor, after hours, sobbing. ME: "My neighbor came over with her 2 year old toddler. Her daughter had her hands all over my baby. And I just found out the next day she broke out with chicken pox! And I know that the day before is when they are the most contagious!" DR: "Does your baby have a fever?" ME: "No." "DR: Has she broken out in spots?" ME: "No. Not yet. But the toddler was contagious! And she was touching her!" DR: "Is your baby showing any signs of sickness?" ME: "I don't know! She's only a few days old!" DR: "But there are immunities. She'll probably be just fine." ME: (wailing) BUT I"M NOT BREAST FEEDING!!!" (Dissolving into sobs.)

I'm sure I made the "Honey, you'll never guess what happened today at work," conversation that night between the doctor and his wife.

I also was NEVER going to be overly controlling. When I was younger, I interpreted that as not doing my kids' science fair tri-folds for them. I thought it meant letting my children access their storybooks at all times, do art projects involving glitter, and get both the legos AND the pokemon cards out at the same time. But then I became a mother of teenagers. I became wracked with anxiety over the fact that I could not protect them from the hell of junior high. The heavy realization that I could not prevent them from choosing horrible friends or damaging boyfriends, nor could I keep them from potentially making dreadful choices that could harmfully impact the rest of their lives, was incredibly troubling. And at that point, I realized... I have Control Issues. 

My kids actually were all really great teenagers. But I didn't know if any of us would survive their toddler years. All three of my kids landed in the Completely Crazy and Out of Control Toddler category. Still not sure if it was genetic, parenting fails, or a combination of the two. But each one of my toddlers was incredibly busy.  

People would often comment on it, thinly disguising their criticism by saying things such as, "My goodness, your daughter/son is very.... active... isn't he/she?" or "Wow, you are a very patient mother." Which was usually code for, "If that were my child, I would not put up with that."

A few years ago, my friend Rebekka, who was always very direct, said to me, "I need to apologize to you." When I asked her why, she said, "We always sat behind you at church. And I would watch your kids climb all over you and I would tell Gary, "If those were my kids, they'd be slapped silly. Why doesn't she do something about her kids?" But your kids turned out really well. So I guess I was wrong." 

I mumbled, "Thank you?"

And then about 6 or 7 years ago, a friend from my old neighborhood and ward said to me. "We were just talking about you the other day. Y'know (neighbor)? Her kids are really really hard right now. I told her, "Do you remember Christy Ogden? Her kids were TERRIBLE, and yet they all turned out really great." 

I'm not sure if I should be grateful I'm a source of hope for beleaguered mothers, or embarrassed that I am the litmus test of crazy toddlers? 

Either way, I'm grateful that we all survived somewhat intact and that no one became an axe murderer. 

But never say never. 

Because that's how Parenting goes.

"Lord, If Thou Hadst Been Here" - Becoming Whole

Lately, I have been thinking a lot about the story of The Raising of Lazarus. It's a beautiful and amazing miracle. And while some think it is simply a nice biblical allegory, I believe it really happened.

In a talk April 2023, Elder W. Mark Bassett spoke of the story of Lazarus, and had some cool insights. He talked about how in the process of performing the miracle, the Savior asked followers to do what they could do, and then He did what only He could do. For example, Jesus requested that those present move the stone from the grave. They could do this. 

Jesus next expressed gratitude to His Father, which I believe is instructive for all of us. Gratitude opens the windows of heaven. And expressing gratitude to God is something else we can do ourselves. 

And then, Jesus raised Lazarus from the dead, as only He could do. He commanded Lazarus (or "Laz" as the Chosen calls him) to come forward.  And Laz obeyed.  

Then He asked Lazarus's loved ones to help remove his grave bandages. And their fear turned to wonder. 

What a joyful scene this must have been!

The reminder that the Lord asks us to do what we can do, and then we look to Him to do what only He can do, has made me think about my Long Covid journey. What are those things that I can do to improve my health? And what things do I need to leave in His hands?

My favorite part of the entire chapter of John 11 is verse 5, which reads, "And Jesus loved Martha, and her sister [Mary], and Lazarus." I believe that all of our stories can start that way. 

"And Jesus loved Christy... and Chad..." and so on. 

But Him loving us doesn't translate into a stress-free life. He loved Mary, Martha, and Lazarus. And yet tragedy struck. 

"Lord, if thou hadst been here..." both grief-stricken sisters say to Him, when he finally showed up on the 4th day. "Where were you, and why did this happen, if you love us?" and "Why didn't you come sooner?" was the unspoken, heart-wrenching question. 

We all have those moments.

Yet Martha still met Him on the road when she heard he had come. She was in anguish, and He was too late, but she still exerted the initiative and energy (and, quite possibly, charity despite disappointment) required to go meet Him. I love that example. 

Do I go to meet Him? Even when I'm thinking, "Where have you been?"

My aunt and uncle asked me a few weeks ago to share some thoughts as we studied Paul's teachings about the Lord being with us in difficult times. I have so many different thoughts and emotions tumbling around in my mind, and it's hard to crystallize them all.

I have been learning a lot of truths over the past 2 1/2 years. One that is glaringly obvious is that I am NOT a patient person by nature. And while Long Covid has brought a lot of insights and a lot of growth, I do not yet feel like I am on the mountaintop, looking down with a clear perspective. I'm still trudging along I-80.

But I absolutely recognize that the Lord has sent heavenly help through all of this. His hand is seen in different ways... sometimes through a new insight; sometimes through the kind actions and words of others; sometimes with a reminder that I can still serve and help others despite my limitations; sometimes simply with peace. I try to record how I have seen the Hand of the Lord at the end of each day. Having that record reminds me of His tender care and that He is not an impartial observer.

But one thing that I have realized, to a much greater degree than before, is that the Savior is not a magic wand. He is a companion on the journey. When Jesus was on the earth, with only one or two exceptions, he didn't teleport himself from place to place. He walked the dusty roads alongside His followers. He camped on the hard ground and endured the elements. He worked to put up tents, find and cook food, and all of the other mundane and sometimes uncomfortable tasks, alongside everyone else.

And with my personal journey, I've realized He is walking alongside me, even on the most difficult paths. He doesn't just magically whisk me onto a Nimbus 2000 to skip the hard parts. (Is it sacrilege to combine Harry Potter and Jesus? Hopefully, no.) The point is, the key element that makes things easier to navigate is NOT that the setting changes. It's that when we are yoked with Him, we benefit from His strength, His power, His direction. We can't access those things if He is just cheering us on from a distance. 

I've thought a lot about what it means to be yoked with the Lord, and how I can choose to be so. What does that look like for me? And, once I am, how I can be submissive and not continually yank against the yoke saying, "No, I want to go THIS direction!" or "I really think your navigation must be off..."

My illness has increased my desire to be yoked to Him, and has reminded me that I need Him. (Every hour I need Him.) Because everything is better and easier and more joyful when He is near my side.

But it's a work in progress. My health is a work in progress. My life is a work in progress!

The oratorio Lamb of God, by Rob Gardner, has a song that Martha sings, that speaks to how I feel. She pleads,

Yea, Lord: I believe that Thou art the Christ, which should come

The Son of God

But I do not understand...

Touch my eyes and bid them see

That my gaze might pierce the veil

And behold the wondrous scene

That, in dreams, I've long beheld

Oh, touch my heart and bid it know

That ev'ry sorrow here

Is but a moment's tear

And Thou wilt make me whole again

Touch my ears and bid them hear

All the glory of Thy truth

That my hope might come of faith

And no more require proof

Oh, touch my heart and bid it know

That, while in darkness here

The light is ever near

And Thou wilt make me whole again

Then touch my lips and bid them sing

Songs of everlasting praise

That my soul might then believe

And give thanks through all my days!

Oh touch my heart and bid it know

That ev'ry breath I take

Is by Thy tender grace

And Thou wilt make me whole

And Thou wilt make me whole

Oh, Thou wilt make me whole again.

("Make Me Whole", Lamb of God, by Rob Gardner)

Here's to becoming whole!