Birthday Blanket from Cindy

Cindy, who makes the crocheted Ribbit-Tibbits (i.e. Bertrand's friends) and adoptable mice, crocheted her first blanket for my birthday - and then presented it to me on Justin's birthday a couple of weeks ago.

I wanted to showcase a nice photo of me using it. Instead, I'm hanging out on the couch with it in the early evening yesterday with a wiggly Tiny, while Rebekah worked overtime, and both of us (Rebekah and I) dealt with food poisoning. 

But Cindy did a great job with the lap blanket. The colors and the pattern remind me of a blanket my mother had on her bed when I was a child. I will treasure it for many years.

The recap of Bertrand's Back-To-School Birthday Bash will have to wait until Monday. 

Hospital Rewards Card?

So as I've previously written, our family has spent a very challenging couple of years, which have come with unexpected blessings and (perhaps) the opportunity to grow stronger.

Humor is one of our family's coping mechanisms - and Rebekah used that card on Thursday night as we walked into the hospital emergency department, prepared for another all-nighter, for the second time in one month, for a second and separate reason.

Rebekah said, "They should offer a punch card," and I laughed.

So at the check-in desk, I asked if they offered a rewards card for frequent customers. The woman at the desk laughed, too.

None of that changed the situation, of course. But why not momentarily lighten the mood for all?

After I was triaged, I thanked everyone for their time and help and then headed out to the waiting room to find Rebekah and our backpacks of "stuff."

As I left, I heard one of the providers say to the other, "I wish they were all like her."

They don't really (just ask my family).

But I do like the idea of a hospital rewards card.

In the day of rising health care costs, offering a free visit could result in misuse by patients.

Still - why not a free coffee while you wait after, say, ten visits?

Or hospital swag (Rebekah loves swag): T-shirts, hoodies, coolers, mugs? Or (better yet) blankets and travel pillows (yes, Rebekah brings travel pillows and blankets. But extras never hurt).

Could this idea catch on?

Thoughts?

Illustration by Matt Coundiff for "Visage"

Count the Wins or Count the Losses?

So is this cup half empty or half full?

As I've previously written and certainly more than once, our family has experienced an unrelenting slew of challenges and emergencies since the second half of 2021, enough that we often struggle to keep up with them and the rest of life.

I think that 2024, for many in my family, has just blurred past in discomfort and actual pain. It's hard to believe 2025 is on the horizon.

One day in October, while in the midst of several of these events, Rebekah and I waded through some very neglected BryonySeries paperwork. With the end of the year in sight - and having no idea what else might befall us, given the history - we had to address it.

As we backtracked through the entire year and recorded our successes, we finally paused and looked at each other, asking, "How?"

How did we have such a good "book" year when everything else (including us) was falling apart? 

On Saturday I received an award from the community for my features writing with my fiction works being acknowledged as well.  I was one of ten people being honored that evening, so the ceremony was several hours long.

I was also on Day Ten of some of the worst and absolutely unrelenting back pain that I've ever experienced. And it definitely showed in my eyes in the "selfie" Timothy took of us at the end of the event.

But when I'm passed this challenge as well (as I'm sure I shall be - because I'm not at the time of this writing), I'll remember the event more than the pain.

So our really horrible year wasn't completely horrible. We just can't feel those facts yet.

Obviously, no one is going to feel elation when going through health emergencies and grief.

And yet - blessings are often interwoven among the thorns. And when the storm passes, it's nice to see the rainbows.

So is this cup half empty of half full?

Should I be sad I only have half a cup left to drink?

Or should I be happy because I have drunk deeply of really good coffee - and I still have half left to enjoy?

Spiritual Spa Day

Our family's had more than its share of medical unicorns prancing into our lives.

One might think, considering we've survived them all (so far), we'd be filled with great awe and admiration for modern medicine.

But we're not.

Instead, we're often filled with anxiety over what modern medicine might do to us (some of those unicorns are in the drug reaction club) or what new and strange malady might befall us.

Seriously.

Popular buzz words in our home include pheochromocytoma, mast cell disorders/chronic urticaria, Steven Johnson Syndrome, hidradenitis suppurativa, Hashimoto's disease, postural orthostatic tachycardia syndrome (POTS), familial polycythemia (without the vera), hyperhidrosis, and inappropriate sinus tachycardia mixed in with the rather normal diabetes, asthma, Asperger's, depression, anxiety, obsessive-compulsive disorder, dyslexia, allergies (seasonal, food, and drug), white coat hypertension, irritable bowel syndrome, diverticulosis, and diverticulitis (which actually might not have been diverticulitis after all - which really doesn't surprise me).

The awe/anxiety seesaw is a real spiritual pushmi-pullyu in our lives.

People used to comment on my patience for homeschooling my six children. I'd reply that patience is developed by enveloping ourselves in situations that cause impatience.

The same is probably true with overcoming medical anxiety. So I've worked really hard this past year to reframe my thinking with more and less success. Fortunately (?), God has provided plenty of opportunities, too.

This doesn't mean every situation will go well or every provider will be fantastic. But it does mean to have a little faith that the Holy Spirit is present in every situation and will guide us (and those around us) in that moment.

So...

Today I am happily on a clear liquid diet in anticipation of tomorrow's colonoscopy. I say "happily" because the procedure has already be rescheduled four times this year for various medical reasons that weren't sedation friendly.

In these weeks, I've learned an appreciation for the procedure, which - although it has its risks (of which I cannot completely control), is a privilege many people in the world simply cannot access. 

I'm going to try to keep this in mind as the day progresses.

I've already set myself up for success on the back end (no pun intended) by setting up the day, the diet, and the timing of these next two days with all weird health issues factored in. Because realistically, grumbling about being hungry really is the least of my concerns.

The undercurrent of this post is not intended to be whining. It's to address fear. And we all come face-to-face with fear in our lives, even if the situational cause is not identical.

If you're facing fear today, I'm facing it with you. And I hope that helps you.

All that's left is for me/us today to untie the boat and sail out to the middle of the lake and meet the uncertainty, where the real spiritual growth happens.

What's the old saying? A boat is safe in the harbor. But that is not the point of the boat (paraphrased).

So anchor lifted, here I go.

With a big bowl of quivering lemon Jell-O (not blue Jello-O) sitting in the refrigerator with a big spoonful already gone.

Because I've already embarked.

And because blue Jell-O is not allowed 

Good Stories

I love a good human interest story.

I love to hear them, tell them, and preserve them through writing (features or fiction).

Now most people aren't excited to get hospitalized, and I am one of them. But I heard three three good stories three people told me on Sunday that I wouldn't have heard, had I not been admitted for observation and tests over this past weekend.

Not only are the stories good, the stories remind us that real people, most of the time with good hearts and values along with their skills, are treating us when we are ill. 

In the first story, a health care worker shared with me that he's from one country, grew up in a second that has universal health care and euthanasia (and shared personal experiences), and prefers the United States over all countries. 

What prompted the story? A short discussion about why I was here with reassurance that I was in the best place and having the best tests to figure out the issue. 

In the second story, a surgeon shared the disastrous results when one patient used the internet to diagnose and treat a bowel condition. Except the problem was serious and severe: with bowel strangulation and adhesions choking off other internal structures.

What prompted such a story? A review of my medical history, which includes the pheochromocytoma (almost all health care workers without fail want to hear more because pheochromocytomas are so rare).

Yes, I did research my symptoms online. But perhaps because I'm a journalist, I apply critical thinking to my search results, the who, what, when, where, why, and how surrounding the information I'm reading.

During that time, I also tracked physical symptoms along with clinical ones, such as blood pressure and pulse measurements.

And I searched and logged for nearly nine months before I had a diagnosis.

It's having that discernment and applying the good old scientific method I learned as a kid in school.

So he wanted to hear more. And he shared how disastrous internet advice for health issues can be.

I did not argue with him. Because I know it's true. And it's certainly a good cautionary tale.

The third story is the most sublime. This one came from my the doctor serving as my primary in the hospital, an older doctor who is also a specialist in a particular area of medicine.

He, too, wanted to talk about the pheochromocytoma and even had some experience with it in past patients. But he never had a patient whose tumor had bled as mine had (even more rare - just 85 documented cases since 2021 - and the mortality rate goes way up when it happens.). And so, he was curious about it.

So we talked a bit, and I even name-dropped the surgeon at Mayo Clinic, who still wanted to operate on me (once I was stabilized) and did so successfully when other doctors thought I was too high risk and should just go home.

I shared with this primary how very aware I was of the fact I should have died in 2002 and how I never take a day for granted. 

Now, I didn't take days for granted before the tumor either.

But when you're still alive twenty-one years later from something unfamiliar to most people that most doctors have never seen, and that thing should have killed you, the gratitude is more sublime, I think.

So then this doctor shared a story that he told his wife, that they are on the downswing of life. He said that each time they go to dinner together, they should enjoy it that much more, for the dinners they will share will continue to be fewer and fewer now they are older.

"We will not go together," he said. "Either she will go first, or I will go first."

For that reason, he said, we should cherish each day and our time together.

Have a beautiful Wednesday!

New Diagnosis

I lived the most boring life ever as a child - or, at least, that was my perspective.

Anything that was interesting or unusual happened to "other people." Not us.

But somewhere along the way, our family started to "collect" a variety of health issues, many of which are unknown to others. 

Last night one of my sons said we seem to have every weird thing from A-Z.  Made me laugh.

Seriously, off the top of my head we've dealt with (or are currently dealing with) in our immediate biological family the following: pheochromocytoma, polycythemia, idiopathic thrombocythemia, Steven-Johnson syndrome, chronic urticaria, inappropriate sinus tachycardia, polycystic ovarian syndrome, Hashimoto's, POTS, hyperhidrosis - and that's before the "normal" diabetes, hypertension, rheumatoid arthritis, gall bladder surgeries, hypothyroidism, etc.

All but one of the above have appeared in either me, my children, or both. Oh, and there may be asymptomatic multiple sclerosis hanging around that will beg for attention some day. But that day is not today.

Seriously, someone should look at us under a microscope. And chastise whoever is leaving the unicorn feed at our door.

Because now now we can add another to our virtual shelf of oddities: hidradenitis suppurativa, an insidious inflammation and infection of sweat glands that can be unpredictably progressive with no therapies that consistently work. Oh, and it comes with a higher risk of half a dozen cancers, its way of bringing a housewarming gift, I suppose.

Now we can't go as far as to welcome HS into our midst. In fact, it's going to find we'll do its best to make it feel as unwelcome as possible.

But it will certainly feel right at home among its new friends.

The diagnosis came as no surprise.

But I'm thankful for lots of reasons.

One, the latest flare looks healed with no scarring.

Two, I have a clear treatment plan until the the HS outsmarts it, which may never happen.

Three, I have terrific providers.

Four, the news came on Holy Wednesday in the Orthodox church, which is dedicated to healing. 

Coincidence? God's timing? You decide.

And have a beautiful and blessed day!

Perfect Timing

One common theme I often hear when I write my "An Extraordinary Life" features for The Herald-News is that the subject of the story "never complained" when fighting cancer or other devastating illnesses.

No one willl ever say that about me.

Nothing kicks up anxiety for me and for some of my children like illness. Maybe that's because we've been blessed/cursed with some of the most unusual maladies out there: pheochromocytoma, Steven Johnson Syndrome, refractory diseases.

For those of us who complain (I'm raising my hand over here), the complaining is not whining. The complaining serves as a reality check as to what is and is not typical and whether or not someone should act, whether the guard should go up or down.

Too much of the time, getting sick for us is not a simple thing. Too much of the time, going to the doctor is fraught with stress because the only reason we are seeking medical help is because we either couldn't figure out the issue or the issue is too great for us to fix on our own. Too much of the time, the doctor can't get it right on the first try, either.

Two weekends ago I worked. It was a quiet weekend and accomplished a lot. So I was really looking forward to tackling some fiction this weekend.

But on Friday, both Rebekah and I came down with some sort of viral bug.

So on Saturday, we did the responsible thing: we broke open our first home COVID test. Both test results were negative.

On Sunday, we did the next responsible thing: we went for PCR testing. We got the results back yesterday, actually immediately after I told my supervisor I was sick. Both results were negative.

This morning, we are starting to feel better. And the timing was perfect, really.

Daniel has wanted to carve some time out to watch The Haunting of Hill House. Well, since I didn't feel up to anything else, we blew through it this weekend. We're also halfway through The Haunting of Bly Manor. See what happens when you don't have the energy to work out or clean house?

On Sunday, I was starting to feel better and wound up finishing the last two chapters of Call of the Siren after all. Hurray! I'm on the right side of getting well.

But Sunday night, the virus showed its teeth and kept me up half the night.

On Sunday night, I fretted about a big project at work - which I finished on Monday.

On Sunday night, I fretted about some "life" things coming up that this virus might take out only to wake up at 4 a.m. and realize the virus was barely whimpering.

This morning, I'm feeling more assured that some bugs are simply some bugs, and we do get over most of them. The timing of this one was perfect, really, with COVID cases at an all-time low.

I'm a planner, and it's good to plan. I'd never get much accomplished without planning.

I also like protecting my health. I spent the first two decades of my life not feeling well most of the time. And my efforts at wellness have served me well for most of my adult life.

But when plans go sideways, it opens the door for other opportunities.

When the timing is perfect.

Illustration by Sue Midlock for "Cornell Dyer and the Flu"

Coming Along, Getting There (And Two More Benefits of Being Sick)

Temperature is coming down, and my supervisor is kindly letting me work from home again, a real blessing on so many levels.

Last light while trying to fall asleep, I thought of another blessing to being sick: not having to set the wake-up alarm.

Today I thought of another: Enjoying a slower pace. I've stripped my days this week to the roots: my job, basic housework, and taking it easy.

The rest I'll layer back on as my energy returns. Enjoy the day! :)