âInvisible illnesses donât always stop us from making memories. Sometimes they simply change what those memories look like.â
đ The Morning Started Before the Adventure
For weeks, I had been planning to go to Foodie Land.
I had already mapped out which food trucks I wanted to visit, mentally spent money I probably shouldnât, and convinced myself this was going to be a fun day filled with good food and even better memories.
What I didnât plan for was being in the middle of a full-blown Crohnâs flare.
For more than a week, the signs had been there.
The fatigue.
The abdominal pain.
The back pain.
The aching joints.
The endless trips to the bathroom.
But I was so focused on recovering from my port removal and keeping up with Crohnâs bestieâMyasthenia Gravisâthat I convinced myself it was just everything else.
It wasnât.
Apparently, Crohnâs realized everyone had been paying attention to MG lately and decided she wanted the spotlight back.
She didnât politely ask for it either.
She kicked the door off the hinges.
The fatigue became overwhelming. My abdomen felt like it was staging a full-scale protest. My joints and back joined the rebellion, reminding me that Crohnâs isnât just a digestive disease. During a flare, it can affect so much more than the gastrointestinal tract.
Then came the bathroom marathon.
One morning before work, I made multiple trips to the bathroom before I could even leave the house.
At that point, I wasnât worried about being late.
I was questioning basic biology.
I honestly didnât think Iâd eaten enough food to have that much toâŚdonate to the plumbing.
Yet somehow, Crohnâs found reserves I didnât know existed.
One symptom surprised me that morning.
Scalp tenderness.
It had been a long time since Iâd experienced that one.
As I ran my fingers through my hair, even the lightest touch hurt. It was another reminder that Crohnâs doesnât always read the textbook.
Sometimes a flare announces itself in unexpected ways.
StillâŚ
I was determined not to let todayâs plans get derailed.
Like most mornings during a flare, my first destination wasnât the coffee maker.
It was the bathroom.
Then came my daily devotional, followed by my obligatory social media scroll and checking the latest activity on The Dual Diagnosis Diaries. Seeing people reading, sharing, and engaging with my journey always gives me a little boost, even on the days my body has other ideas.
By 8:45 a.m., I had finally gathered enough energy to shower and get dressed.
When youâre living with Crohnâs Disease and Myasthenia Gravis, those arenât just routine morning tasks.
SometimesâŚ
Theyâre victories.
đż Finally Ready to Leave
By 9:30 a.m., I was finally showered, dressed, and ready to leave the house.
WellâŚ
Mostly.
I only had to interrupt my shower twice for emergency bathroom trips, which was incredibly annoying. Apparently, Crohnâs believes even showering should come with intermissions.
Before heading out the door, I made one more strategic move.
I took a Mestinon.
With a day of walking around Foodie Land ahead of me, I wanted to do everything I could to stay ahead of the muscle fatigue that comes with Myasthenia Gravis. Crohnâs was already throwing enough obstacles in my path.
I wasnât about to let MG sneak in and tag-team with her if I could help it.
With that, I headed out to charge my Tesla before making my way to the Burbank Metrolink Station to pick up Joy.
Before I even left the driveway, I had already made one executive decision.
There would be no 7-Eleven stop for pork rinds today.
If youâve been following The Dual Diagnosis Diaries, you probably know exactly why.
After the Great Pork Rind Incident, I wasnât about to tempt fate while already in the middle of a Crohnâs flare.
Some lessons only need to be learned once.
đ Best Laid PlansâŚ
I pulled into the Burbank Metrolink Station right on time to pick up Joy.
She climbed into the car, looked at me, and the very first words out of her mouth wereâŚ
âCan we stop for a snack?â
I couldnât help but laugh.
Of course she did.
Apparently she hadnât gotten the memo that todayâs itinerary had already been rewritten by Crohnâs Disease.
Our first stop became Walgreens because she needed to pick up a few things.
Then I realized I was hungry.
Yes, we were heading to Foodie Land.
But my stomach wasnât interested in waiting.
McDonaldâs fries felt like the safest choice. Familiar. Predictable. Less likely to cause problems before the main event.
With fries in hand, we headed toward the Rose Bowl.
Or so we thought.
Somewhere along the drive, Joy looked at the event information again.
âIt doesnât start until 3:00 today.â
Silence.
Todayâs hours were different from tomorrowâs and Sundayâs.
We werenât a little early.
We were three and a half hours early.
SoâŚ
We laughed.
Then improvised.
We found a shopping center with Ross, Marshalls, and TJ Maxx.
Joy went shopping.
I stayed in the car.
With a Crohnâs flare already in full swing and a long afternoon of walking ahead of me, conserving my energy wasnât being lazy.
It was strategy.
đŽ Foodie Land at Last
We arrived back at the Rose Bowl around 2:45 p.m.
The line was already forming.
By 3:05 p.m., we were officially inside Foodie Land.
Mission accomplished.
We made a full lap around the venue before deciding what we wanted to eat.
Food and drinks in hand, we found a place to sit, people-watch, enjoy the music, and simply enjoy the moment.
As I sat there eating, I caught myself smiling.
For a little whileâŚ
I wasnât thinking about Crohnâs.
I wasnât thinking about MG.
I was simply enjoying good food, good company, live music, and watching people enjoy themselves.
For a little whileâŚ
I felt normal.
About two hours later, my body sent me another message.
This timeâŚ
It wasnât Crohnâs.
It was MG.
The familiar sensation slowly crept in as though someone had wrapped a bear hug around my chest and refused to let go.
Between the heat, the walking, and everything my body had already endured that dayâŚ
MG had reached its limit.
That was my cue.
Sometimes chronic illness doesnât ask.
It tells you.
𼾠Listening to My Body
By the time I made it back to the car, I was completely out of breath.
But I made it.
Joy wasnât doing much better.
Her face was bright red from the heat, and she looked completely exhausted.
We sat quietly in the air conditioning for several minutes, catching our breath and deciding what to do next.
Eventually, we looked at one another and came to the same conclusion.
We were done.
Not with each other.
Not with the day.
JustâŚ
Done with being outside.
So we charged the Tesla.
Then I drove Joy to the Amtrak station so she could catch her train back to Fullerton.
đĄ Home Sweet Home
By 7:30 p.m., I was finally home.
Back in comfortable clothes.
Back in my own space.
And perhaps most importantlyâŚ
Back near my own bathroom.
Somewhere between dropping Joy off and pulling into my driveway, I realized something.
Today hadnât gone according to plan.
ActuallyâŚ
Very little about today had gone according to plan.
But maybe thatâs the lesson chronic illness keeps trying to teach me.
Sometimes success isnât measured by how long you stay.
Sometimes itâs measured by showing up in the first place.
Despite the Crohnâs flareâŚ
Despite MG eventually reminding me it had reached its limitâŚ
Despite the heatâŚ
Despite all the unexpected detoursâŚ
I had a really good day.
Our time at Foodie Land was shorter than we planned.
Would I have loved to stay longer?
Absolutely.
But sometimes living with chronic illness means celebrating what you did accomplish instead of dwelling on what you couldnât.
Today I got out of bed.
I pushed through a flare.
I listened when my body told me it had enough.
I spent time with a friend.
I laughed.
I made new memories.
And I made it home without a single incident.
If all you saw were the pictures from Foodie Land, youâd probably think I spent the afternoon eating great food and having fun.
What you wouldnât see were the trips to the bathroom before leaving the house, the interrupted shower, the Mestinon, the strategic rest breaks, the chest tightness, or the quiet moments spent sitting in the air conditioning trying to catch my breath.
Thatâs the reality of living with invisible illnesses.
People often see the memories we make.
They rarely see everything it took to make those memories possible.
Crohnâs may have opened the show.
MG definitely insisted on performing the finale.
But neither one stole it.
TodayâŚ
I still got to live my life.
And for meâŚ
That was more than enough.
đ Thank you for taking the time to read this entry from The Dual Diagnosis Diaries.
If this story resonated with you, taught you something new, or reminded you that youâre not alone, please consider liking, subscribing, and sharing this blog. Your support helps raise awareness, encourages meaningful conversations, and helps others navigating life with chronic illness feel seen.
Until next timeâŚ
Keep advocating.
Keep learning.
Keep living.
Founder ⢠Author ⢠Advocate ⢠Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries đ
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