āPeace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.ā ā John 14:27 (NIV)
š A Quick Note Before We Begin
If youāve been following my journey, you know infusion day is usually one of my favorite days of the week.
As I sat on the edge of my bed trying to convince my body that it was, in fact, time to cooperate, Michael Jacksonās Man in the Mirror popped into my head.
āIām starting with the man in the mirrorā¦ā
Normally, infusion day fills me with hope.
This morningā¦
The person staring back at me looked exhausted.
Infusion day usually means another Rystiggo infusion, another opportunity to breathe a little easier, feel a little stronger, and reclaim a little more of myself.
But this infusion day was different.
Sometimes living with chronic illness isnāt about one major event.
Sometimes itās about what happens when life, stress, and your body all decide to hold a team meeting without inviting youā¦ and somehow the only item on the agenda is:
āLetās test Kia today.ā
š Running on Empty
Just two days earlier, I had found myself in the emergency room because my thumb had swollen to the point that I couldnāt ignore it. The swelling had gone down, but it still hurt and remained warm to the touch. My body was also recovering from having my power port removed only days before.
Emotionallyā¦
I was running on empty.
Not the kind of tired that a nap fixes.
The kind that settles into your soul.
It took everything I had just to get out of bed, get dressed, and prepare for my infusion nurseās arrival.
Then, just before my nurse walked through the door, family drama unfolded.
My blood pressure didnāt stand a chance.
š āCan I Even Receive My Treatment?ā
When my nurse arrived, she immediately knew something wasnāt right.
Honestly, I think infusion nurses could solve crimes.
They know something is wrong before youāve even said hello.
She began with the routine questions she asks before every infusion.
āHave you been exposed to COVID?ā
āNo.ā
āHave you been treated for an infection?ā
āYes.ā
āHave you been to the emergency room?ā
āActuallyā¦yes.ā
I reminded her that Iād recently had my power port removed before explaining my unexpected trip to the ER because of my thumb.
She asked what medication had been prescribed, so I grabbed the prescription bottles.
After looking them over, she told me sheād need to contact the specialty pharmacy before starting my infusion because I was taking an antibiotic.
Immediately, my brain skipped every logical step and sprinted straight to the worst-case scenario.
Great.
Just what I need.
An unscheduled interruption in treatment.
At this point I was waiting for someone to tell me my car had been stolen by raccoons.
Thankfully, after speaking with the pharmacist, she returned with the words I desperately needed to hear.
āWeāre good to proceed.ā
I donāt think she realized how much relief those four words brought me.
š¢ āI Just Need Some Peaceā
Normally, infusion days are filled with conversation, laughter, and catching up.
Not this one.
I barely spoke.
My nurse noticed.
As she gently asked questions, trying to understand what was weighing so heavily on me, something inside finally broke loose.
Without warningā¦
Cue the waterworks.
I burst into tears.
Not because of my thumb.
Not because of my port.
Not even because of the infusion.
It was everything.
I told her I was exhausted by the unknown.
Exhausted from fighting battles at work only to come home and face different battles.
Exhausted from constantly carrying responsibilities while trying to hold myself together.
Then the words came out almost as a whisper.
āI just need some peace.ā
As I cried, she checked my blood pressure again.
It had climbed even higher than when sheād first arrived.
After what probably looked like an unexpected therapy session, a good cry, and a much-needed pep talk, my blood pressure slowly began coming back down.
The infusion ended.
She packed up her supplies.
And off to work I went.
š© Surely a Honey Bun Will Fix Thisā¦
Even after the infusion, something still felt off.
I couldnāt explain it.
I couldnāt describe it.
So naturally, I consulted my medical degree from the University of Google.
The treatment plan?
One honey bun.
One Starbucks Doubleshot.
Apparently I was convinced sugar and caffeine were about to revolutionize the treatment of autoimmune disease.
Needless to sayā¦
That treatment plan has yet to make it into any medical journals.
ā ļø When My Body Finally Said, āEnoughā
About two hours into the workday, I could barely keep my eyes open.
Every movement required effort.
Breathing became labored.
My joints ached.
The fatigue became overwhelming.
Thatās when it hit me.
This wasnāt just emotional exhaustion anymore.
My body had officially joined the conversation.
I recognized the warning signs.
I wasnāt in an MG crisis, but I knew I was heading in a direction I didnāt want to go if I didnāt listen to my body.
I needed to go home.
The problem wasā¦
I didnāt have enough energy to leave.
So I did something I never imagined Iād do.
I laid my head on my desk.
Somewhere, every leadership book Iāve ever read was probably screaming,
āRegional Property Managers donāt handle stress like this!ā
Wellā¦
Leadership books have obviously never met Myasthenia Gravis.
I rested for about forty-five minutes.
Eventually, I regained just enough energy to keep going.
Or maybe āfake itā is the better description.
Property managers spend their days solving everyone elseās emergencies.
That afternoonā¦
I couldnāt even solve my own.
š The Long Drive Home
Somehow, the rest of the day passed.
Before I knew it, it was five oāclock.
Ironically, Iām usually headed home around three.
As I walked to my car, I started giving myself a pep talk.
By the time I got behind the wheel, I had become my own motivational speakerā¦
my own HR departmentā¦
and Employee of the Monthā¦
all in the same conversation.
When I pulled into my driveway, I didnāt immediately get out.
Instead, I sat in my car for fifteen minutes.
Preparing myself.
Bracing for whatever chaos might be waiting behind the front door.
When I finally walked insideā¦
It was quiet.
āThank You, Lord.ā
I actually said it out loud.
Sometimes peace doesnāt arrive in grand gestures.
Sometimes itās simply walking into a quiet house.
š When Even Your Skin Feels Tired
I retreated to my bedroom and made one mistake.
I returned a missed phone call from one of my employees.
Within minutes, it turned into unnecessary stress and drama.
I politely ended the conversation because I simply had nothing left to give.
I climbed into bed hoping sleep would come quickly.
Instead, even the feel of the sheets against my skin irritated me.
I wanted to crawl out of my own body.
I turned the fan on high and pointed it directly at me, hoping the cool air would calm whatever my nervous system had decided to do next.
Eventually, I drifted off.
But it didnāt last.
Midnight.
Wide awake.
Staring at the ceiling.
As I lay there, Peace Be Still by Hope Darst came to mind.
Not because life had suddenly become peaceful.
It hadnāt.
But because I needed the reminder that Godās peace isnāt found after the storm ends.
Sometimes itās found right in the middle of it.
I lay there waiting.
Hoping.
Praying the Rystiggo would begin doing what it has done so many times before.
Giving me just enough strength to face another day.
Because sometimes thatās all weāre asking for.
Not perfection.
Not miracles.
Just enough strength.
And maybeā¦
Just maybeā¦
A little peace.
š Final Thoughts
Living with chronic illness isnāt just about managing symptoms.
Itās about navigating the invisible weight of uncertainty, responsibility, fear, and hope while still trying to show up for the people who depend on you.
Some days we can push through.
Other days our bodies lovinglyābut firmlyāremind us whoās really in charge.
As I think back to the words from Man in the Mirror, I realize the person staring back at me this morning wasnāt weak.
He was simply worn out.
And thatās okay.
This diary entry is a reminder to myself that even those of us who spend our lives encouraging everyone else are allowed to admit when weāre running on empty.
If youāre living with Myasthenia Gravis, Crohnās Disease, or another chronic illness, I hope this reminds you that needing rest isnāt weakness.
Listening to your body isnāt giving up.
And asking for peace isnāt asking for too much.
Sometimes peace looks like a successful infusion.
Sometimes it looks like making it through the workday.
And sometimesā¦
It looks like walking into a quiet house, climbing into bed, and trusting that tomorrow will be kinder than today.
Thank you for taking the time to read this entry from The Dual Diagnosis Diaries.
If this story resonated with you, I hope youāll consider sharing it. Together, we can continue raising awareness about Myasthenia Gravis, Crohnās Disease, invisible illnesses, and the realities of living with chronic illnessāone story at a time.
With gratitude,
Kia Lorice
Founder ā¢ Author ā¢ Advocate ā¢ Future Wellness Coach
The Dual Diagnosis Diaries š
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