Long Haul Covid – Testing, Testing

Karen McCullough Posted on by

Over the last couple of weeks, I’ve had a CT scan of my lungs, a pulmonary function evaluation, a neurological evaluation the orientation for pulmonary rehab.

I won’t know the results of the pulmonary function evaluation or the CT scan for a couple of weeks when I have my return visit to the pulmonologist.

The neurological evaluation was interesting and somewhat reassuring. It involved all sorts of tests of various facets of memory, expression, and reasoning. Reinforced what I already knew – I’m not a verbal learner. Read me a list of 15 words and ask me to repeat them I may be able to do 6. Maybe. I do much better with remembering things I’ve seen. In discussing the results, the neurologist said the tests indicated no sign of cognitive decline. Considering my age (and the fact that I’m currently at the exact same age my father was when he started showing signs of dementia), I find that very reassuring.

It doesn’t help explain or provide any way of dealing with the occasional bouts of brain fog. That seems to be a problem mostly during relapse phases and can interfere with my ability to write. I’m not sure there is any cure for that, so I mostly roll with it, as irritating as it is.

The last thing was the intake evaluation for pulmonary rehab. They did a bunch of standard tests, including taking my blood pressure several times, testing oxygen, grip strength, and ability to walk for six minutes. They talked about the kinds of exercises I’d be doing and taught me one interesting breathing technique (pursed lips breathing) to try when I was having trouble.

Like several of the other docs, the people I talked with at the Pulmonary center felt that their rehab program would help me get back into shape, at least as good shape as possible. Over the past few weeks I’ve been feeling increasingly better, so I’m hopeful. I may never be able to walk the distances or at the speed I used to, but if I can get to the point of being able to walk several miles without collapsing, I’ll be grateful.

Unlike some of the other docs, I’ve talked with, the nurse and the therapist at the rehab center were entirely sure (based on my symptoms) that I had had Covid last year. The things I was telling them about my condition and issues matched very closely to what they’d been hearing from many other Covid19 patients. They can’t offer a cure but they do feel like they’ve been able to help some of those others.

I’ll report back after I’ve had the next appointment with the Pulmonary doc. But in the meantime, it still feels good to be tackling the problem and doing what I can to get back closer to normal.

Long-haul Covid – An Appointment with the Pulmonologist

Karen McCullough Posted on by

After talking with my Primary Care Doc a couple of times and a visit to the newly set up Covid Long-Haul Clinic in my area (neither of which was much help), I got an appointment with a local Pulmonologist who has a special interest in post-Covid care.

As an aside, let me say that there are times when I feel like a fraud as a Covid Long-Hauler. I can’t prove that I ever had Covid-19. Testing wasn’t freely available when I’m pretty sure I had it in March, 2020, so I never had a positive test. My primary care doctor said the symptoms sounded like Covid-19 but that’s the closest I’ve ever gotten to a diagnosis. An antibody test done five months later was negative. But I do know I had something remarkably like Covid-19 last March and a year later I haven’t fully recovered from it.

Dr. M., the Pulmonologist, read through all my written notes about my symptoms and the timeline of my illness, and I could tell from his questions that he took it seriously. I told him that I was looking for a way to get back to myself, the self who could and did sometimes walk for hours and hours a day without getting short of breath or collapsing from exhaustion. He was honest in return, telling me that medicine has no real answers for long-haul Covid at this point. But he would help me try to sort out the problem and do as much as we could toward a solution.

To that end, he scheduled me for a pulmonary function evaluation, a CT lung scan, a neurological evaluation, and pulmonary rehab.

At this point I suspect the problem with my breathing and energy probably isn’t really in my lungs, but the PFE and CT scan should help sort that out. Of course, if there isn’t an actual lung problem, that leaves an issue that’s harder to understand and deal with. But at least I’ll know and maybe it will help shape the approach to a solution.

The neurological evaluation should get some perspective on my episodes of what others call “brain fog.” That doesn’t really describe my problem, which is more that I find it hard to concentrate at times. It’s not constant but happens often enough to be disturbing. And it really bothers me when I’m trying to work on the next novel, and all I can do is stare at the computer screen, unable to make myself write the next sentence. It’s not exactly writer’s block because it’s not that I don’t know where the story’s going next or what to write. It’s more that my brain just refuses to do the work to get the words together, even when I know what I want to say.

I’ve had a couple of the tests and others are coming up. I won’t get results from the breathing tests until my next appointment with Dr. M, which won’t happen until late May.

In the meantime, the last relapse has passed, and I feel mostly okay. I still have to be careful not to over-exert myself, to prevent a collapse that will take me out for at least the rest of the day and sometimes into the next day. Oddly, even trying to force myself to concentrate on a task for too long will bring on that kind of collapse, though it involves no obvious physical exertion.

And though I know that there are likely no easy answers for my problem, I’m happy to be doing something to tackle the issue. I’m not good at sitting around doing nothing.

BTW: I apologized to the doctor for the two pages worth of written notes and timeline I’d brought as I thought it might be an over-abundance of information. (I’m a writer, after all.) But he thanked me for it and said he wished more of his patients would do something similar. It gave him a much better picture of my problem than just a few questions in the office could do.

The Fight to Get Back to Myself

Karen McCullough Posted on by

I’ve talked before about my suspected case of Covid-19 in March, 2020. I say suspected because I’ve never had a test to confirm it. Testing wasn’t available at the time unless you were in the hospital and I wasn’t that sick. An antibody test done six months later was negative. So I can’t prove I’ve had it. I wrote about it at the time here.

But I know I have had Covid-19, just as I know I now have Long-haul Covid, current officially designated as PASC (Post Acute Sequellae of SARS-Cov-2). I’ve blogged about that as well here.

I’m more than a year post-Covid now and I’m not back to what was normal before. Worse, I’m not really any closer than I was two weeks post-acute-Covid. And I’m tired of it. Literally and figuratively. I’m tired of being tired too much of the time. I’m tired of having to be extremely careful every time I go out for a walk to be sure I don’t go too fast or too far, lest I bring on a collapse that will make me useless for the rest of the day and possibly the next couple of days. I’m tired of the relapses that bring on another round of coughing, pain, extreme fatigue and set me back to square one on the recovery process.

I’m tired of trying to nurse myself along, thinking that I’m making progress, only to have another setback push me right back to square one. After a year of trying to recover myself, I’ve realized I need help.

Which is easy to say but hard to put in practice. The search for medical help has been frustrating. I’ve been to my regular doc twice now when symptoms were bad. He was sympathetic but really had no idea how to help.

When I heard that my local hospital system was starting a dedicated clinic for Long-Haul Covid, I was thrilled and set up an appointment right away. Sadly, the visit didn’t go well. The person I saw seemed to concentrate entirely on my symptoms at the time. I was in a relapse phase and had a cough but did try to make it clear that I wasn’t really bothered by the cough itself. It would go away once the relapse cleared again. (As, in fact, it did.) But I came away from that visit with a bunch of prescriptions – most of which I didn’t get filled or didn’t take – and, thank goodness, a referral for a pulmonary evaluation.

The person I saw didn’t even think it was necessary for me to come back for a follow-up exam. That’s how seriously they took my problem.

But I do believe that pulmonary evaluation referral is going to prove extremely helpful, even if the Covid clinic wasn’t. Stay tuned….

Goals 2021 Update 1

Karen McCullough Posted on by

At the beginning of the year I posted a few goals for the year. You can find that post here.  In the interests of accountability, I’m posting an update to keep myself on track.  As of right now (about 1/3 through the year) I’ve written 3 new short stories (of the 5 I set as a goal).

I’m at 16,000 words of No Time for Mistakes, one of the two novels I want to finish. This will be a fairly short novel, 45,000 – 50,000 words, so I’m about a third of the way through it.  It’s due to the published on August 1 for publication sometime in September.

One thing I didn’t make a goal, but has since become one, is to start working on my Long-haul Covid status. I don’t know if I can ever recover completely the energy and stamina I had before Covid changed my life, but I’m going to do what I can. That means getting help and I’m embarking on a path that I hope will lead to improvement. More on that coming in the next few days.

Covid-19 One Year Later

Karen McCullough Posted on by
Yesterday was the one-year anniversary of the day my doctor told me (virtually, of course) that it sounded like I had Covid-19. Because I didn’t need to go to the hospital and couldn’t verify that I’d been in contact with anyone with a confirmed case, I didn’t qualify for testing at that time. But the symptoms made both of us confident I had it.
It’s been a long year for me because my symptoms didn’t stop after I ‘recovered’ five weeks later.
I wrote earlier about how I likely got it and my experience of the disease so I’m not going into it here. You can read about it here.
The past year has been an up and down one. I have Long Covid, now officially designated as PASC (Post Acute Sequellae of SARS-COV-19). For me that has meant almost constant, low-level breathing problems and bouts of exhaustion, particularly if I try to exercise too hard. I also have periodic relapses of symptoms that seem to occur at irregular intervals and last anywhere from three to ten days.
I’d planned to make this a little report on how much better, finally, I am. Because my symptoms have improved and I’ve had only two very minor relapses over the past few months, one of which came after getting the first dose of the vaccine.
However, two days ago I started coughing again, my chest hurt, and my head was pounding. It was worse when I woke up yesterday and persists this morning. Not only do I ache all over, but fatigue is sitting heavily on me, so here I am with another full-blown relapse. I hope this one won’t last long.
I’m also hoping this is the one step back in the two-steps-forward, one-step-back trajectory that has characterized my slow recovery.
The good news is that I’m back to writing and mostly managing to live my life as I want (under Covid protocols, of course), and feel reasonably well most of the time. And I’ve learned how to deal with some of the issues. I’ve found that I can exercise as long as I pace myself carefully. I can keep going for a long time as long as I don’t push too hard. If I try to walk at too fast a pace, I start having serious breathing issues. My walking mileage has gradually increased but I can’t do it at the same pace I used to. I don’t know if I ever will.  But I’m grateful that I can walk

Website Redo

Karen McCullough Posted on by

I will shortly be unveiling a new and, I hope, improved version of my website. I still like my current site, but it’s been around for ten years or so, and it’s starting to look dated. The narrow main column no longer suits the wider screens of today, and the technology I use is old and had limitations.

I’ll be moving the site into WordPress, which provides a number of advantages. It’s much easier to update and make changes across the entire site, and it also provides mobile- and tablet-friendly versions, which makes Google’s search engine ranking happy. And finally I’ll be implementing https technology, which provides end-to-end encryption of all communications between visitor and site for enhanced security.

Re-doing the site has given me a chance to redesign the graphics. I still like my dark blue and silver color scheme and will be keeping it, but I have a slick new logo and images to illustrate the different genres I write in.

I’ve also taken a look at my information architecture (a fancy term for how the menus and page relations are structured). I decided I didn’t need major changes but made some small tweaks.

I hope the new site will be interesting and inviting.

For Love of Calvin & Hobbes

Karen McCullough Posted on by

This past Christmas my daughter, her husband, and four sons all isolated themselves for two weeks so that they could visit us safely for the holiday. Thankfully, no one got sick in that time. It was still a more restrained Christmas, with fewer activities and visitors than in a normal year, but we were thrilled to be able to have them with us for a couple of weeks.

The nine-year-old is a proficient and voracious reader. The seven-year-old reads well enough, though he’d rather be building things, and the five-year-old has made a good start. Even the three-year-old enjoys looking through books. We try to have a good supply of age-appropriate literature around for them.

But, in fact, the overall favorite books for all of the boys is their Grandad’s treasured set of Calvin and Hobbes books. Their love for those books is so strong, permission to read them serves as a reward – they’re allowed to look at them only after cleaning up all the toys they’ve left scattered across the floor and every other available surface.

Even the three-year-old, who doesn’t read yet (as far as we know), seems to adore them and will look at the pictures for as long as he’s allowed. I’m not actually surprised. Some of the appeal has to be the marvelously adorable drawings, which are detailed and expressive enough to tell stories on their own.

The older boys will giggle, laugh, and frequently bring certain strips to adult attention, reading the dialogue out loud while attempting to contain their amusement long enough to get the words out.

They understand and appreciate Calvin’s wry sarcasm and wild imagination on some levels. The adventures of Spaceman Spiff and his other imaginary alter egos tend to be favorites. They ‘get’ that many of Calvin’s imaginary scrapes are mirroring real-life unpleasant situations. And they seem to understand that Calvin is using his flights of whimsy as a way of dealing with a world over which, as a child, he has very little control, though of course, they haven’t the words to explain it.

I can see aspects of each boy’s personality in Calvin. The oldest is probably the most similar. From a small child his favorite companion animal has been “Mr. Monkey.” By the time he was able to read (he taught himself to read somewhere around his third birthday) and began to expand his world, he also began to make up stories about Mr. Monkey and his adventures. Those finally expanded into “Monkeyland,” a huge and richly detailed world that occupied much of his thoughts for many years.

His next brother, the seven-year-old is more physically oriented than his brother, but still has a rich and vivid imagination. His favorite stuffed animal companion is a bear and we’ve heard many adventures in “Bearland.” But he’s also the kid who shimmies up doorways and will climb anything he can reach. Any tree that has a foothold he can get to, sometimes with the help of porch furniture, other play equipment, or even his bike, is fair game. He’s the kid who climbs on top of the playground equipment. When it comes to heights, he’s fearless. Calvin on his madcap sled-rides and in his treehouse remind me of him.

The five-year-old is the charmer of the family. He resembles Calvin in his very definite opinions, expressed with great confidence. If anyone in the family would conduct a survey on Dad’s popularity with the younger set, it would be him.

The three-year-old… I don’t know. He’s a bit too young to call. On the other hand, for the last year or more, he’s been insisting he’s a cat and will frequently meow. Yet he does it with a sly little grin as he clutches the stuffed kitty-cat that is his favorite companion animal.

As an adult I still love reading the comics, too. There’s something both gloriously innocent and wryly wise about Calvin that reminds me of just how broad the world can be. And it reminds me that as a kid I created and explored strange lands in my own imagination. In my writing, I try to continue to do so, struggling to shake off some of the limitations decades of dealing with the real world has tried to impose.

By sheer coincidence, while I was writing this post, I happened on this story in the Washington Post that makes some of the same observations, but talks more about the universal appeal in ways I hadn’t considered:

‘Calvin and Hobbes’ said goodbye 25 years ago. Here’s why Bill Watterson’s masterwork enchants us still. – The Washington Post

Goals and Ideas for 2021

Karen McCullough Posted on by

I no longer make resolutions for a new year. After many years I’ve realized they never go anywhere and are generally forgotten with a few weeks. Instead I set goals for myself, and I try to make them goals I can work with and have a decent chance of achieving. Plus I post them publicly for both accountability and motivation.

Most of my goals involve what is now my primary career: writing.

I have two novels currently in progress, a mystery, Playing at Murder, and a romance, No Time for Mistakes.(Both titles are tentative.) My goal is to finish both by the end of the year. I’m also setting a goal to write five new short stories and submit each somewhere.

On a personal level, I’ve begun a project to scan all the photos in my large stack of photo albums that are aging and falling apart. It’s a big project and I expect it to take up most of the year, but I hope to finish it by next Christmas. It’s part of an ongoing attempt to clean out and get rid of as much as possible of the ‘stuff’ I’ve accumulated over the years.

And this one is neither exactly a goal nor a resolution. It’s more like a promise to myself. I plan to find a way to do something that will help others, especially those who have been less blessed in life than I’ve been. I don’t know what that means right now. Certainly the pandemic is a complicating factor. But I’m feeling a strong need to do more and give back. Stay tuned.

 

2020 Tried to Break Christmas for Us (But it Didn’t Succeed!)

Karen McCullough Posted on by

Christmas didn’t start well for the McCullough family, and me in particular.

In early December we began to put up the tree balls that are a characteristic decoration of our neighborhood. Tree balls are chicken wire frames crushed into a spherical shape and wrapped in strings of lights. The trick is that they work best when hung high in the bare branches of the many old oak trees in the area.

We don’t put up a lot of them for various reasons, but I had eight ready to go. We managed to get four up in the back yard and three in the front when the slingshot we use to get the cord high in the tree suddenly broke. Not the rubber bands that you pull back, but the frame itself, which simply snapped. We decided we could live with only seven balls in the trees rather than eight.

Until we had a windstorm a few days later and the cords broke on two of the balls in the back. Using a baseball and lots of duct tape we managed to get those two back up, though not as high as they’d been. Another few days and one of the balls in front came down. At that point the weather had turned bad and when it cleared we were deep into other Christmas things, so we declared the ball a yard decoration and left it on the ground.

Then there was the tree. Traditionally we’ve bought a fresh tree to perfume the living room with that lovely pine aroma. I’d been warned to shop early because trees were going fast, but it turned out that the eighth of December was too late. The lot I’ve been going to for the last twenty years was down to their last trees and they were a pretty sorry lot. I picked what I thought was the best of the group and brought it home.

After considering our age, the inconvenience of having to select, haul, water, and clean up after a live tree, we decided that next year we’re going to get an artificial tree. That decision became relevant when we discovered that the tree stand was leaking water. Since we didn’t want to invest in another tree stand, we went to work with more duct tape and a plastic garbage bag. It worked! No water leaked out once the tree was set up.

The next curveball thrown by 2020 was for me alone. I’ve made no secret of the fact that I had Covid-19 last March, and I’ve also shared that I have still have symptoms and relapses nine months later. While preparing for some family coming for Christmas (more on that later), I had another Covid relapse (headache, cough, muscle aches, and awful fatigue). And just as I was getting over that I developed painful back spasms.

A call to my doctor’s office resulted in a prescription for muscle relaxers, and suggestions to use ice, heat, and ibuprofen. Fortunately, after a couple of days those worked, and the spasms subsided.

By then my daughter and her family had arrived from Indiana. To make the visit possible, the entire family isolated themselves for two weeks before setting out to be sure they wouldn’t be bringing any germs. They minimized stops on the way here and were masked for all of them.

After that inauspicious start, we had a good, if somewhat muted Christmas. Other than a few trips to local small playgrounds, we did no trips out other than runs for last minute gifts or to the grocery store and we did miss some of the places we’d normally go. Equally we missed many of the people we’d normally see over the holiday, but we look forward to a future where we’ll be able to do those things and see our family and friends again.

In the end, the rest of the tree balls held and the neighborhood display showed its usual magnificence, the scraggly tree looked warm and friendly when decorated, disguising its bending trunk and the lack of branches from the middle of the tree to the top on one side, and having the family around was great. And, even, though we couldn’t see many of the people we normally would, warm wishes in the form of texts, emails, phone calls, Facetime, cards, letters, and even Facebook posts reminded us how fortunate we are in the network of relatives and friends we have. Even if we couldn’t be with them, we were aware of their presence and good wishes, as we did our best to provide the same for them.

The Harry Potter Themed Birthday Party- Part Three

Karen McCullough Posted on by

(This story is best read from the beginning. Go here to read part one and then part two if you haven’t already)

After the busy day the boys had, there were a couple more payoffs.

Not long after Quidditch practice, as the boys were taking off jackets and outdoor shoes, the five-year-old noticed that the magic seeds had sprouted into a bunch of adorable succulent plants while they weren’t looking. I wish I’d had my phone ready at the time because his expression on seeing the plants was a priceless combination of wonder and amazement. He pointed at them and could barely manage to get out the word, “Look.” The astonishment and excitement spread to his brothers.*

Having finished their lessons for the day, the boys got another treat: they watched the movie, The Princess Bride for the first time. Although the younger ones found some of the scary scenes hard to take, the nine-year-old and (to some extent the seven-year-old) were deeply engrossed in it. Later the same day one of the boys was heard to threaten another with the line, “You could end up ‘unemployed in Greenland’!” I believe there were also mentions of not being left-handed. Their Mom says they’ve asked to watch it several more times and even though she loves the movie, too, she’s starting to feel like it’s too much of a good thing.

The day concluded with a festive birthday dinner in a Hogwarts-decorated dining room. They boys had their favorite meal: pizza, in a magically lit dining room. We had strung “floating” candles from the ceiling with fishing line. The candles were miniature LED candles encased in rolled up cardboard tubes. It actually worked well and was very effective.

   

Finally there was cake and presents. And one of the nine-year-old’s dearest birthday wishes came true. He got volume five of the Harry Potter series, Harry Potter and the Order of the Phoenix. He’s a voracious reader and would gobble it up over the next couple of days.

*Their mother and I bought a set of small succulent plants at a garden shop and planted them in the pots while the boys were outside for Quidditch practice. We didn’t say anything about it, just waited for one of them to notice the change.