Trial and error

Things I’ve learned in the first three weeks of 2021:

Sugar = pain. I love sweets, but my body doesn’t like sugar and it’s no longer shy about letting me know. Like, it’s really not holding back any opinions. I tried having dairy-free ice cream bars for dessert after dinner and it threw my joints back into the red/swollen/achy mess they were in last fall. Same thing with Splenda in my tea. And forget about me sneaking a bite of leftover Christmas candy. That dog don’t hunt. So… Fruit is now my sweet of choice. It’s a slow shift but it’s a good one. I’ve started making dried green apples in my air fryer and those are my new favorite I-have-to-have-a-sweet snack.

Exercise = good. Weeks in which I’ve been able to either take a short walk or ride my stationary bike are better weeks. I sleep better, move better, and think (a little) more clearly. So I aim for at least 30 minutes of activity 6 days a week.

For the first few days, just sitting on the bike for five or ten minutes, keeping the resistance level on the lowest setting, and going s-l-o-w was enough. I didn’t know if the pressure on my feet/ankles/knees or lower back would trigger another flare or make me stronger. The pain wasn’t too bad, so I just kept trying a little more every day. In time, it’s gotten easier. Or maybe I’ve gotten stronger? Either way, exercise helps.

At my last appointment, I asked the Rdoc about returning to the gym and taking water aerobics – he said group classes are not a great idea since C19 numbers are so high, but swimming or water walking solo would be ok. So maybe I’ll give that a go next.

Rashes = odd. After a month or so of methotrexate, my hands and arms sprouted a tiny flock of itchy, red bumps. So that’s weird. Remind me to show my doc at the next visit.

Brain = jello. I’ve never been a rocket scientist, but I’m not usually this hard pressed to find words, finish tasks, or remember why I walked into a room. Maybe it’s age. Maybe it’s the methotrexate/prednisone combo. But it’s annoying and it makes doing both my paid-job and my mom/wife-jobs a little harder to do in a reasonable amount of time. My mind wanders like Frodo through the forest. Only he has a mission, and I don’t remember what I’m doing there. But I keep trying. Making myself lists. Saying things out loud… What was I writing about again?

Round one = done. For as long as we’ve talked about the availability of a covid vaccine, I’ve thought I would be one of the last to get it. Until December, I considered myself very low risk, so why would I take the shot before someone else?

Then my Rdoc and my GP informed me otherwise, and put me on their lists. I signed up on the county lists, thinking there’d be no way I would get the shot before the spring. But after three weeks of waiting – I got notification that I had an appointment.

So I did what any reasonable person would do: I cried and confessed my guilty feelings to my husband. I’m not proud. That’s what I did. He listened. He’s good that way. And in spite of my silly pride and fear of the vaccine triggering a flare (or worse), I got the shot.

I’m fine. It’s all fine. Really. Sjogrens and Lupus – or shlupus, as we call it here – aren’t new diseases. People with shlupus live full lives and chase their dreams and work and do all the things and they have for years. It might take me a minute to figure out what this looks like for me, but I’m doing it, and with God’s grace and a little trial and error, I’ll get there.

My new superpower

To be fair, I’ve always had a sensitive nose. I am the designated family sniff-checker when it comes to milk drinkability. I’m the reigning champion of the refrigerator game “Safe or Salmonella.” So this isn’t technically a new gift.

But it kind of is. Somehow, over the past few weeks, this gift has dialed up to 11 and I can tell when the refrigerator door is open when I’m not even in the kitchen. I can smell things from across the house. If it has an aroma and it’s in the house, I’m smelling it, good or bad. For every donut and poptart I can sniff, there’s a dirty sock or mildewed towel. Which, I realize, makes it sound like we eat all the time and never do laundry but we have a teenager.

Even weirder is that I’ve noticed when the disease is active, my hair smells different. It’s not a great different, either. Nobody wants to buy the shampoo I’m selling, if you know what I mean.

I spent an entire afternoon asking my husband and son to sniff the top of my head. That was a really long afternoon. They insisted they couldn’t smell anything, and I insisted on wiping down the couch cushions and washing my pillowcases in scalding water. They began leaving the room as soon as I entered… it was not fun. After much pestering, my husband finally said “It just smells dry.” Dry.

I wonder if anyone else experiences this, or if it will go away after a while as I adjust to medication. Or maybe I’m just losing my mind. That’s a strong possibility.

Either way, I may need to make myself a cape.

The Christmas tiger

In the past, our Christmasses have been filled with an obscenely fun amount of activities – from fall winter sports tournaments and showcases to teacher/staff appreciation luncheons, volunteer banquets, work parties, friend parties, church parties, and of course the Big Party on Christmas Eve and all the festivities of Christmas Day.

This year, we’d hoped to be able to visit family and friends, at least for an outdoor picnic. Maybe even a scavenger hunt for the kids. But a week before Christmas I was diagnosed with Lupus and Sjogren’s diseases, and the treatment cocktail included immunosuppressants, so any kind of gathering with people who don’t live in my household was/is a bad idea.

So Christmas looked different this year. As much as my heart ached- and still aches – to see family and friends, it ended up being a blessing to be still.

When I was still, I saw my husband install new, joint-friendly door handles because our other ones were hard for me to manage and he didn’t want me to hurt. I watched my son vacuum the house and heard him sing at the top of his lungs while he did it (just like his Papa did when I was a kid). I heard them do laundry, and dishes, and order my favorite salads for dinner delivery. It made me feel warm, loved, and cared for while I’m learning how to manage these diseases.

I feel like someone gave me a tiger for Christmas and I can’t return it. Now, I love tigers. Tigers are absolutely one of God’s most beautiful creatures, but let’s face it – they’ll kill you if you turn your back on them.

Beautiful, yet terrifying. Photo by Flickr on Pexels.com

If someone gives you a tiger, you have a choice. You can find people who know how to properly house and feed tigers, keep them occupied and happy so they leave you alone and you can both live in peace- or you can try to take care of it on your own. You might get lucky and get along with it for a while, but the day will come when the tiger gets hungry. It could be today, it could be a year or ten from now, but that day will come.

Over the past two weeks, my husband and son showed me that I’m not alone in dealing with my tiger. Their support and encouragement lifted me up when I needed to see that I have tiger experts on my side. My doctors and nurses are equipping me with the best tools they can to keep the claws and teeth of these diseases at bay. And of course my family have already shown me that they’re ready to help when the pain and fatigue are overwhelming.

This Christmas was odd but beautiful in its own way. I’m so grateful that God gave me the people He did for this moment in my life. As hard as these past few weeks have been, I feel peaceful and hopeful. I know without a doubt that as time passes, together we’ll tame this tiger and it will simply be another facet of an interesting life rather than something scary.

The Firenado

The other night my husband and I caught a few minutes of a tv show while it was actually airing on tv, not streaming or DVRd. In this program, scientists were trying to explain what they believe caused an odd-shaped scar in the middle of a desert. After about twelve and a half minutes of exploring possible options, they showed video of one of my nightmares how an enormous firenado was the most likely scenario.

Fire tornado outback Australia
“Fire tornado outback Australia” by chris.tangey is licensed under CC BY-NC-ND 2.0 permission requested/pending

For a firenado to form, nature has to line up perfectly. First, there needs to be fire. Check. Fire needs air. But a firenado? Turbulent air. I’m no scientist, but if I understand this correctly, the combination of intense heat from the fire and cooler, turbulent air create a vortex of doom. This doom vortex is the firenado.

We watched examples of this swirling vortex of flame and destruction on tv for a little while. They’re mesmerizing. When we were kids, we’d light sparklers and trace shapes on the driveway with the charred ends. That’s what firenados remind me of: God tracing shapes on the earth with sparkly bits of flame.

After the TV firenado struck, over time, new life grew in desert. Plants, birds, reptiles all returned.

The flaming pain of my personal firenado has subsided. Not totally quenched, but subsided a lot. Today I go visit my doc and start the rest of my treatment plan. God willing, He will do with me what he’s done so many times in the desert and elsewhere: Use this to burn off the excess and start new.

Here we go

I was on a client Zoom review today when my phone buzzed. I didn’t answer it.

When I checked my voicemail, my rheumatologist’s nurse had left a message, probably because I checked that little box on my new patient form that said she could. Lab results are in, she said. Indicative of Lupus and Sjogren’s, she said. Call if you have questions between now and our appointment (in three days).

Call if I have questions.

Oh, I have questions. My questions have questions.

But I don’t think I’ll call today. Sure, I wish I’d hopped off that Zoom call, but I think the hardest part is over and it’s a relief. Kind of. Did I mention I have questions? Questions and a need for a long nap.

Today I’m just here, at the bottom of the mountain, looking up. My proverbial tank is empty and I have a long climb ahead. I have peace, though, for the first time in a little while. That’s not a bad place to start.

This verse in 2 Cor(12:9) is whispering to me right now:

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.

Stay tuned.

Shifting gears

2020 didn’t hit my family as hard as it could have, and for that I am tremendously grateful. We had our share of bumps and bruises, but overall we didn’t have to worry about keeping a roof over our head or food on the table.

Of the three of us, our son has probably navigated the changes with the most grace. Virtual learning, or as we called it, “practice for college,” suits him for the most part. He appreciated the asynchronous classes, setting goals and deadlines and getting things done.

His classmates with older siblings – the ones who knew what high school used to be like- grieved what they were missing. But our freshman had no expectations. Rolling with the punches wasn’t easy, but he adapted. FaceTimed. Texted. Played online games.

Shifting gears wasn’t ideal, but he has never been one to waste time wondering what could have been when there’s so much to explore now.

As far as my husband’s work goes, it was fairly smooth sailing on that front, too. My husband’s boss is overseas, so working remotely wasn’t ever a question for his team. He made one trip in to the office to pick up some necessities and transitioned comfortably into working from home.

Even our dog seemed to embrace the tidal wave of change that swept over our home. More hands in the house meant more belly rubs and warm cuddles. His weekday world grew.

But me? Well, that’s a different story.

I tried to sail smoothly. Everything about my beloved routine came to a screeching halt. Daily visits to the gym were done. Housecleaning without an audience was history. My kitchen table, which was once my peaceful, solitary writing space, became the hub of household activity.

I tried new things. I baked, sketched, did Zoom workouts, learned to knit, walked or biked the neighborhood. I ached to see family and friends, like everybody else.

When August came around, I was tired. Not covid-fatigued. Not anxious or depressed. Tired. My hands and wrists were stiff and achy. My knees and ankles popped going up stairs. I chalked it all up as a less-than-glamorous side effect of getting older, or maybe just a rough year.

I found a new workout on YouTube and added it to my daily routine. It felt great to move and get stronger, and I thought maybe a new type of workout would help me feel less tired. After a couple of weeks, I noticed my joints ached afterward, not my muscles. Maybe I need new shoes. Or I’m just not as conditioned as I was. You know, getting older.

In October, I started knitting blankets for my family for Christmas. On the first blanket, I turned on “A New Hope” and knitted away to Luke and Leia’s adventures, and was finished by the time the Death Star exploded. Blanket number two took me from “Empire Strikes Back” through “Return of the Jedi.” By blanket number three, I had to rest between each row. (I’m still not finished with blanket number four.)

My hands aching, especially after a lot of activity, wasn’t a new thing. But aching first thing in the morning? Red, swollen knuckles? That was new. So I made an appointment with my doc.

I honestly thought she would tease me about getting old and tell me to take ibuprofen and a hot bath. But she didn’t. A few blood tests, a flu shot, and two weeks later, and I was headed to a rheumatologist. “It’s probably a false positive, but just in case,” doc said.

In the meantime, whatever it was lurking in my body grew increasingly hostile. By Thanksgiving, every joint in my body hurt and my hands and feet would go ice cold at random times. All I wanted to do was sleep.

Sleep wasn’t easy to come by, though. My bones were sensitive. It sounds weird, but the weight of the sheets was unbearable. Then came the tiny, stabby, prickly feeling crawling across my calves, ankles, elbows, and wrists.

Some days, the pain would subside late in the morning and for a blissful couple of hours I felt okay. Creaky, but capable. This tiny shred of normalcy got into my brain and tormented me. See? You’re imagining all this. You’re fine. Quit being a baby and go empty the dishwasher already.

Other days, my big bear of a son would sneak up and hug me. Two thoughts flashed through my head at once: oh I love him so much and hey is that my spine ripping from my body right now? I tried to hide my pain from my son but I know he saw it, and I don’t know who felt worse. No kid wants to hurt his mom, and no mom ever wants to turn down a hug from her son.

My first visit with the rheumatologist was a week and a half ago. I’ll spare you the details for now, but I left with two things. The first was a prescription for steroids to reduce pain and inflammation. The second was knowledge that there are two likely culprits for what I’ve been going through these past several weeks (months?). Dealing with either will require some changes. Both are autoimmune diseases.

If you’d asked me a year ago whether I thought a) a global pandemic was possible in 2020 or b) I’d be diagnosed with an autoimmune disease in the middle of it, first I probably would have laughed. But I’d like to think my answer would be the same.

I will go down whatever path God puts me on, because I know He is good.

My book projects aren’t gone forever, they’re just paused for the moment. I think maybe instead of writing for kids I need to write for people like me, who find themselves someplace they didn’t expect to be.

Maybe you’re not facing a new diagnosis, but you are facing a new year without a job. Or spending the holidays without a loved one for the first time. Or maybe you are recovering from an illness, or just exhausted from the rollercoaster this year has been. Everything has shifted, and it feels like you’re at the bottom of the mountain looking up.

None of our circumstances are a surprise to God. How we’re feeling right now? That’s not shocking to Him either.

Even with prickly feet, I rest easier in that knowledge. Whatever I learn, feel, or experience in the days and months ahead, I know without a doubt that it’s all going to be okay.

Return to Sender

I want to wish you a happy new year and celebrate all those hopeful feelings that January usually brings. Dearest friend, I want to.

No, I take that back. I do wish you the happiest, healthiest, most productive year yet. I hope 2020 brings you happiness, exciting challenges, good health, and blessings galore.

For my part, though, I’d like to send 2020 back and get a fresh one. I think mine is defective.

See, here’s the thing. Are you familiar with an angry little organ called a gallbladder? I had heard of it. I knew I had one. As far as I knew, my gallbladder was working fine – storing the bile, sending the bile, like a gallbladder does.

What I didn’t know was that my gallbladder had been plotting mutiny against me for years. Unbeknownst to me, it had operated in quiet rebellion for years, plotting its own little Shawshank from the shadow of my liver.

I will never forget the evening of December 28, when the my gallbladder unleashed its relentless fury. My son and I had spent much of the day celebrating my nephew’s birthday. There were bacon cheese fries. This is important.

That evening, we had a mini-reunion at an escape room with my son’s best friend from preschool and her mom. This was a meetup we’d both been looking forward to for months. But by the time we checked in and signed the disclaimers, I knew trouble was brewing.

At first I thought it was a digestive challenge, if you will. A rumble here, a pang there. I tried to make small talk and smile, hoping to avoid embarrassment. After the kids solved the first clue, though, I was covered head to toe in sweat and would have sworn somebody had stabbed me just below my right rib cage. We made our way through the escape room, the kids chattering away while I sat wherever I could find a corner, argued with myself over whether or not I should call an ambulance, and continued breathing in and out.

I couldn’t tell you much else about the escape room other than the kids finished it and I made it out alive. After the group photo, I apologized to our friends and my son and explained that we wouldn’t be going out for coffee later because I might be dying.

My husband hadn’t joined us at the escape room because he had the flu. But when I called him, that sweet man jumped out of bed and drove me to the ER without a single complaint.

Six hours, multiple failed IV attempts and a ridiculously painful ultrasound later, I was sent home with prescriptions for pain and nausea meds and a diagnosis from the ER doc: “You have gallstones, so eventually your gallbladder will need to come out. We can’t take it out because you’re not that bad yet. But here’s a phone number for a surgeon you can call when it is.” Not. That. Bad. Yet.

Y’all, over the course of my life I’ve been in car wrecks, poured boiling water on my hand, stepped on Legos and gave birth to a child. I have never been in worse pain than I was that night.

Apparently, those cheese fries were the last straw. I called surgeon and have a consultation in three weeks. Three. Weeks. But now I’m afraid to eat anything because I do not want to anger the beast that lives in my upper right quadrant.

So back to the point of my (really whiny and complain-y) post: Happy New Year and I love y’all, but I’m feeling like a ticking time bomb and I’d like a do-over of 2020 please. Thanks 🙂

Mum’s the Word

HoCo Learning Curve
How cute is this little singing bear?

I’m not a native Texan.

This was stunningly obvious to a fellow Hobby Lobby shopper who spotted me as I blinked at the homecoming decoration display. She touched my shoulder, smiled empathetically, and said, “Aw. Honey. You’re not from here, are you?”

This sweet stranger spent fifteen minutes talking me through how to make a mum, who gets how many flowers and what color ribbon, and the importance of personalization.

When she was done, I thanked her kindly for her help. Then I returned my empty basket to the front of the store and saw myself out. I may or may not have purchased a consolation chocolate bar first. For homecoming.

I’m okay with a glue gun. I can paint a flat surface one color. I stenciled a flower once.

But I’m not homecoming-mum-level crafty. And I’m good with that.

I found a neighbor on the Facebook who is homecoming-mum-level crafty. She owns a floral shop and she’s amazing. And patient. Which is a great thing because when I called her I spent a solid thirty minutes racing through questions:

  1. My son is going with a friend, do we still get her a mum?
  2. Why is this a thing?
  3. How does she wear it?
  4. When does she wear it?
  5. When does he give her the mum?
  6. Does he have to wear one?
  7. Why is it on a garter?
  8. Do they keep them afterward?
  9. Are the flowers real?
  10. No really, why is this a thing?

I still don’t have solid answers for #2 or #10. But we embraced the tradition, horrified our kid, and thoroughly exasperated friends and family in the process with near-daily mum texts.

I can’t wait until next year.

Unpopular Opinion: Pumpkin Spice Isn’t That Great.

This time of year, people like me lurk in the shadows, stealth-sipping our cinnamon teas or our chai lattes. No more hiding. I’m speaking up.

I love autumn as much as the next gal. Honest. I do. I love decorating the house for Thanksgiving. A good harvest theme never gets old. What does get old, though, is pumpkin spice.

Before you start hurling gourds at me, hear me out. Please?

Have you ever tasted pumpkin? It’s a squash. Squash ain’t sexy. Squash doesn’t make you want to curl up by the fireplace and daydream. It makes you want something else to eat that’s not squash.

Notice that the flavor is pumpkin spice. Not pumpkin. The “spice”- that’s where it’s at. Because pumpkin is gross. What is this spice, anyway? It’s not pumpkin pie. It’s not gingerbread. It’s… something else. If I want spice, I’ll get it from my buffalo wings, not a squash, thankyouverymuch.

The good news for people like me is that PSL season arrives earlier and earlier each year. It’s still eighty-hundred-thousand degrees outside. That means that before the weather cools off enough for people to enjoy it, they’ll have burned themselves out on the stuff.

So for now, I’m sporting a tank top, watching people drink their pumpkin spice coffees and sweating through their cozy scarves and ugg boots. Yay fall.

Photo by Ylanite Koppens on Pexels.com

Three Things I Learned at a Writing Workshop

Writer friends, I know you. Some of you are on the fence about investing anything other than your time and imagination in your writing future.

I know this because that’s where I was. Full of doubt. Overflowing with insecurity.

As long as I didn’t take this “writing thing” too seriously, I hadn’t risked embarrassment or failure.

Then, four years ago, me and all my doubt and insecurity went to the SCBWI annual conference in Anaheim. You know what happened?

1) I met other writers.  When you meet other writers, you learn that you’re not the only one with fears and doubts. You’re not the only one who’s figuring things out as you go. You’re at a table with an ecclectic, diverse group of people who share a common dream: to write stories people want to read. I don’t know about you, but I find that very comforting.  

2) I learned from experienced authors, editors, agents, and publishers. Publishing is a great big messy world with a head-spinning number of moving parts and pieces. I won’t even pretend I understand it all. But there are experts out there who know their business exceptionally well, and they’re generous enough to share what they know at conferences. I’m convinced that if I work hard and stay teachable, someday I will see my books on shelves. You can too.

3) I gained some confidence. There’s nothing quite like sharing your work with a critique group for the first time. There’s also nothing quite like getting through the critique session and thinking, “I’ve got plenty to work on, but that wasn’t so bad.” Think about it – you shared a piece of yourself with others and the world didn’t explode. Not too shabby! I’ll share a secret with you: Writers want to help writers. We know how hard this is. We want to help.

Lastly – If you’ve read along and thought “This is all well and good, but I could never go to anything like this. I’m ______,” allow me to gently and kindly take you by the shoulder and say “Yes you can.”  Not only can you, if you’re serious about writing, you should invest time and energy in learning new things about your craft.

For every writer in the room, there’s a unique path that led them there. Don’t worry whether or not your path is like theirs. It won’t be. The good news is: There’s room at the table for all of us.