notes on a toxic boyfriend

Wait, read the introduction at the “hello. start here” above before proceeding.

1.

The Toxic Boyfriend

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I have lived with lupus for 18 years. Good, bad, or indifferent, lupus has lived with me too.  Must be difficult for the disease to live in a body that fights back and has the will to persevere.

Lupus is like an unpredictable boyfriend. In my journey of love miracles and mishaps, it has a supporting role (though not quite supportive).

Frankly, I’m in a messy situationship. It’s cyclical, like the dude who simply won’t give up on annoying the heck out of you.  Asking to see you at odd hours, demanding your attention, sliding into DMs after getting blocked.  Just when you think life is smoothing out, here he comes again demanding your time and energy.  He's toxic, but you can't shake him.  He won't go away quietly.

I don't do messy unless I'm creating something.  But this guy doesn't take the hint.

He's a squatter, renting without paying a dime.  He's a taker, who makes you feel guilty for focusing on dreams and self-actualization. He should be featured in a Beyonce song.  He makes a lot of noise, while saying nothing at all.  He likes pain and discomfort, watching you intently as you say goodbye again and again. He doesn’t believe you.

When he comes around without an invitation, it takes time and effort to push him out of the way.  Sometimes he won't go away without a double-edged sword of medication like a steroid or chemotherapy drug.  Double toxicity. We’ll talk more about that later. Other times he sits quietly waiting to pounce again, hoping to create more chaos and loneliness, and isolation, and exhaustion.

Others cannot tell you're struggling, and while that may be a level of temporary emotional protection, it is also one of the reasons lupus is difficult to diagnose. The patient has to prove it.  People assume if you're not in the hospital or sick and shut-in at home, that you must be ok.

We invest in the facade of “ok”, an imaginary land that does not exist.

Case in point:

How are you doing?

I'm ok. You?

I'm good, thanks.

(keep walking away).

When people look my way, they don’t see lupus. They see a bubbly woman who is easy to talk to. Similar to the way we literally can’t see heartbreak. There is an invisibility to pain and suffering. We like to show the highlight reel. But what happens when the highlights become fewer and fewer?

Many times we see and sense someone is hurting, but we don't want to pry or offend. We don't want to guess wrong.  Most importantly, we don't want to be uncomfortable.

Asking to see you at odd hours, demanding your attention, sliding into DMs after getting blocked.  Just when you think life is smoothing out, here he comes again demanding your time and energy.

This is our western culture – pleasure, impatience, and instant gratification. Undercover hedonism.

We don’t do well with invisibility, gray areas or abnormalities.

Lupus thrives in the grey area confounding everyone – including me.

Walking with lupus is a familiar toxicity and breaking up is the temporary win.

Sometimes that toxic boyfriend disappears for days, months, and even years.

Until one day...

Ding. Ding. Ding.

read on to note 2

Thank you for stopping by. I’m glad you’re here, and I appreciate your reading my blog, a vulnerable, open, behind-the-scenes collection of notes on my journey with lupus.

Disclaimer: I am not a medical doctor. While I obtained a PhD in a mental heath field, I’m not presenting or interpreting scholarly research nor medical advice on this page. This blog is personal.

My name is Joy – writer, poet, artist, dreamer, doer, believer.

You may or may not be familiar with lupus, an autoimmune disease impacting mostly women during childbearing years. It can also impact men and children. There is no cause or cure for lupus, that we know of yet. It is difficult to diagnose. Rheumatologists, and in some cases, Nephrologists and Dermatologists, are the medical specialists who can diagnose and treat the various manifestations of lupus.

Sixty years ago, a diagnosis with lupus meant early death. Simply put, there were no medical treatments specifically for lupus. More medicines specifically targeting lupus slowly trickled into the treatment conversation over the past few years. Progress is a good sign to lupus thrivers, and we have a long way to go.

My therapist asked me the following question: are you concerned with how your loved ones may feel reading your blog?

One of the consequences of overachieving, perfectionism and people pleasing, is the masks we wear. Another is… we don’t truly get to know ourselves because we are too busy hiding behind achievement and anxiety. The older generations taught us not to share pain or tribulations outside the home.

To be able to heal and love myself fully, I am committed to showing and telling my story, note by note. After all, I’ve lived with lupus for nearly 20 years. My experiences will hopefully help someone else who is experiencing a rollercoaster of health struggles.

Thank you for traveling on this journey with me.

Please remember… The toxic boyfriend title is a metaphor.

start reading note 1

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3.

Disappointment is an empty makeup tube.

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Today, as in present day, anxiety is tearing up my stomach.  Nearly 20 years ago, I caked on my makeup to hide the butterfly rash forming across the bridge of my nose and expanding to my cheeks.  Today, I can see the entrance of another butterfly as the rash across my face becomes more pronounced.  Not sure if the return of the butterfly is a full-circle moment or a warning.

Pardon my French – WTF!

When I gazed into my bathroom mirror, I wasn’t expecting to see the rash, nor my non-existent eyebrow hairs, nor the intensely dark circles under my eyes. My favorite concealers from MAC and Smashbox were empty. I tried to squeeze some Sephora concealer on my finger to no avail.   That, too, was empty.  Armed with Fenty foundation and some MAC spf 35 concealer, I made my face as best I could. Today’s makeup looked and felt dry like day-old toast forgotten in the toaster.  How quaint.

Instead of giving myself time to process my current bathroom mirror situationship, I simply kept applying foundation and concealer.  Inside my makeup drawer, I discovered some “bye bye undereye” concealer and threw that under my eyes. Then I blended all the colors and added eye makeup and lipstick.

The makeup application was complete, but I was not. Trying not to admit I’m sicker than last week, and the week before that, and the week before that. The fact is… the prednisone – a double-edged sword – isn’t helping as it once did.

Neither is my makeup application.

Read on to Note 4

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4.

Wigging out Part One

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Remember when wigs were for older adults heading to church or a nice event? In pictures of my grandmother, my mother's mother, would be her stylish fashions and a wig or hairpiece. Fabulous. Time passed before I truly realized the joy (and anxiety) of wigs.

Growing up in small-town NC, going to the hairdresser was a whole mood. Pressing my hair bone straight was a painstaking process. Moms, aunties, hairdressers tamed the “nappy” parts of the hair and edges with lots of heat. This was the 80s.

I was terrified for my mom to use the hot comb on my hair at home. It wasn't her I was most afraid of; it was the heat of the comb crackling near my ear. Memories of that comb situation makes my skin tingle now.

Braiding was difficult for me to endure, especially when I couldn't feel my scalp for a week afterward. Too tight. I wore them proudly during the summer and while away at summer camp where swimming was a highlight.

Surprisingly, I could endure the pain of Saturdays in the hairdresser's chair, which I did repeatedly for years. Couldn't go out with nappy, untamed roots and poofy hair. That simply wasn't acceptable if planning to leave the house for the day.

The jheri curl was next. My hair was now curly. I sprayed my hair with plenty of moisture-giving activator, and I no longer needed that scary hot comb. However, I thought it made me look awkward — like a shiny, short-haired, unglamorous tween. It was not cute, nor was I.

When I see myself in pictures from that era, I’m mortified.  Along with the jheri curl came prescription glasses, signifying the beginning of my nerd emo girl phase.  Black was my favorite color then.  Painting the bedroom walls black was goals, of course.  It didn’t happen.  My room was painted pink with a cute pattern.  It was a pepto bismol pinky pink.  Yes, it was.

Before the start of my 7th grade year, my stylist introduced me to the lovely relaxer, the creamy chemical crack. Going from curls to bone straight meant endurance, I quickly learned.  Keeping the relaxer on my scalp longer meant straighter hair, and that was the goal.  How long could you endure the chemicals on your head to get the most silky, fresh outcome. As I grew older, the relaxer became the standard. Just try not to get your hair wet.

As I walked into my new school following my first relaxer, I thought I was pretty fresh, pretty fly.  I wore an updo with fingerwaves from my edges up, encircling my head, and at the top were barrel curls falling towards the front near my face.  I looked like Prince circa Diamonds and Pearls era.

To find my 7th grade section, I had to walk past most of the students.  Walking across the gym felt like a beauty pageant where I knew the judges didn’t like me. Some kids looked at me and snickered.  Some made comments about my hair and clothes. I thought I was fresh and stepping into glamour days. Instead, I crawled inside my protective shell and disappeared internally. My self-esteem was lower than it had ever been.

Armed with a mechanical pencil and a blank journal, I began to write.  Getting lost intentionally in writing was the way I survived middle and high school. Writing was my therapy and still is.

After my embarrassing entrance on my first day of school, I looked at the hair on top of people’s heads.  I studied certain girls in my classes.  What they wore.  How their hair bounced.  The wrap was in. Every night I wrapped my bone-straight silky hair around my head and covered it with a satin scarf.  Aaliyah was growing in popularity.  I was trying to have hair like hers.

One morning, the wrap didn’t lay down quite right when I started unwrapping it. I didn’t sleep pretty. When I combed my hair to achieve the wrap effect, the ends of my hair would not lay down.  The ends of the hair jutted outward and started getting bushy.  What shall I do?

I found some scissors and cut the offending part of my hair.  Done.

Read on for Wigging Out Part 2

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5.

Wigging out Part 2

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I cut off an inch or two of my hair.  Just like that.  My solution to the hair situation was to cut it. I had no strategy nor an aftercare plan. I combed my hair and ran out the door to head to an event.  When I arrived, I noticed small coarse hairs from my cut job were falling on my shoulders. I wore a bright tee which showed the shards of hair vividly.  Super untidy. I spent the rest of the day dealing with my shorter hair.

My mom asked why I did it.  I shrugged. My hair wasn’t behaving.  Now how do I fix it?

As the years passed, I experienced significant breakage around my edges, and I sustained some sores on my scalp from the relaxer marathon at the hairdresser.  I made up my mind to endure the chemicals like a champion.  At times, my head would shed so badly when I washed it. I’m surprised I had hair on top of my head.

Through college and into young working adulthood, I continued relaxing my hair. My hair thinned more and more.  After my lupus diagnosis, I had to buy a wig because I had no hair.  After a hospital stay for nearly two weeks and the promise of a return to work, a wig was imperative.

Thankfully, my mane didn’t stay gone for long.  In the process of getting well, my hair began to grow.  It felt softer, and I yearned to explore it in its natural state.

However, returning to work was a priority. I couldn’t return to the office without a head of pleasing professional hair!  The early 2000s was not the hair revolution. Hence my introduction to wigs began.

The first wig I purchased was with my mom who stayed with me in Washington DC as I navigated life after my first lupus flare. We found a cute, curly bob wig, and I wore it for several months while my soft, less coarse hair grew back.  My hair was the texture of a soft blanket.  No longer thick and tight.

Afterwards, I would not wear a wig again until 2009 when I experienced another severe lupus flare.  At the time I dated the chocolate god and tried to keep up with him and his interests.  I wanted him to love me like I loved him.  When his love for me began to grow stronger, I was in the process of buying my first home. The chocolate god and I were inseparable at this time. He even met my Dad, which was no small feat.

During this time, I made the decision to drop my participation in the clinical trial, a trial I joined at the beginning of my lupus diagnosis. In traveling back and forth, 90 minutes each way to Duke Hospitals for the continuation of my clinical trial, I decided I was well and didn’t need the trial anymore.

Then, I flared… again.  Several quiet years had passed with minimal issues, and I felt stable.  During this era, I kept my hair in a beautiful natural afro.

When the chocolate god and I returned from a trip to San Francisco, I had to purchase a wig for work. My front edges were going bald.  I hoped I could return to the clinical trial, which was so good for me.  Due to the trial logistics, I could not return.

As the flare continued, my relationship suffered.  In my perception, the chocolate god was no longer attracted to me. Sigh.  I was exhausted most of the time and added pressure beginning to work on a doctorate degree.

The wig I wore at that time was the worst wig I could have chosen.  It was long, straight, synthetic and tangled easily.  There wasn’t enough brushing in the world to tame one day of wearing that wig, but I wore it.  I had to wear something on my struggling head.

One day, the chocolate god and I traveled to the fair in Raleigh NC.  I wore a baseball cap over my stringy wig.  In typical “me” fashion, I wanted to impress the chocolate god and told him we should get on the hurricane ride.  He looked at the ride and then turned to look at me, with a puzzling look.  I told him, “I can go on the ride.”  I felt the wig was secure enough, and I could tighten it.  He looked at me and said “no”.  He did not want to be embarrassed nor draw attention to himself.

Needless to say I complied and away we went.

Worst case scenario ran through my mind.  “He’s not in this like I’m in this,” I thought.  We began arguing, and I demanded he leave. I wanted him to evaporate.  He needed to go. My home was mine, and his moods were like a box of chocolates from last year. I allowed him to get his stuff out, and then I blocked his number on my cell phone.

Post-kicking him out, I missed the chocolate god and unblocked his number.  A storm of texting began.  My friends and some of my colleagues followed the drama as it unfolded.  Everyone had an opinion.  This is what happens when we confide in people around us and don’t yet know ourselves or our pathway.

A breakup ensued in the most dramatic of ways. And, while I could share the scene that jumped us in the next stratosphere. What’s important to know is: The chocolate god and I never spoke again… not ever.

Once I healed from the flare and began to address my relationship issues and concerns, my season of braids began.  Finding a natural hair stylist who would take care of my natural hair was a priority.  I found one and kept cute braids for several years.

By 2015, I was dating again. I’d lost weight by then, choosing to diet with Weight Watchers, which worked well. I dropped from 230 to 145 to 138.

At this point, I met butterscotch jamaica, a fiery leo with a huge ego.  He was handsome, well spoken, and gentlemanly. He worked as a teacher in the public school system, and he was good at his profession.

Our first date was legendary.  butterscotch jamaica invited me to the high school prom at his school.  Throughout the summer months of 2015, we dated church-style.  No sexual intimacy.  We waited until the third date to kiss.  Dates in the summer included frozen yogurt at Sweetfrog, coffee at Starbucks, and dancing at the winery. We were so “holy” we listened to contemporary worship songs on the way to that special prom.

Perhaps I spent so much time trying to impress butterscotch jamaica that my time in the sun caused me to lose my hair… again.  Noticing a trend?

One aspect of lupus is that prolonged exposure to the sun can trigger rashes. There isn’t enough sunblock in the world to cover trekking up the country’s largest sand dune in the heat of summertime.  butterscotch jamaica took me to the outer banks of NC where we camped out behind some sand dunes with a church small group from our church.

Within a few weeks of the trip, the braids began to fall out at the crown of my head.  They literally came out at the root leaving bald spots at my crown. By the end of the summer, all of my hair fell out… again. At this point, I was used to moody hair changes.  However, this change was coupled with disappointment.

butterscotch jamaica and I called it quits upon his return from family travel.  He broke up with me with a reason that made no sense. Probably because it was nonsense. He said we argued too much. But when did we argue? We had one solid disagreement. Bruh, please!

Before he left for the trip, he started spending a lot of time with his “friend”, a girl. I walked into his apartment to be present with him while he packed for the trip. Out she comes from the back bedroom in a night shirt and short shorts. Seriously uncool. She barely spoke to me while I was there. That was the beginning of the end.

When I arrived home from his apartment, I discovered something shocking. A braid from my head of hair was laying on the floor of my car. Nervously I touched my head looking for a bald spot. My fingers reached the spot where the braid was supposed to be. The spot was smooth and soft. My nerves were not.

Post-breakup I found a cute, short wig at the super beauty supply, and that wig became my staple for the next 3 years. It framed my face beautifully.  Easy to care for and long-lasting, I bought several wigs of the same style from the store.  Mind you I wasn’t into lace fronts… yet.  They scared me.

The front half of my hair never grew back.  After steroid injections, hair growth serums, vitamins, herbal tinctures, and prayer, the hair would not grow. Eventually I kept it shaved bald and rocked a bald head for about a year before stumbling into Amazon wig land.

What a time of growth!

When I landed in Amazon wig land, I discovered my jam was curly wigs with lots of body.  My cousin called me Lola Falana and Tina Turner at Thanksgiving dinner one year.  It fit me.

For three years, through the pandemic, I wore some amazing, gigantic Amazon wigs.  Fabulous to behold!  This trend increased my self-esteem.

Obsessed with finding the perfect wig for the summer, I hopped onto my Amazon app and added another cute wig to my cart full of wigs. I was definitely obsessed.

Staring at my phone, I scrolled up and down my cart attempting to select the wigs that needed to downgrade to “Saved for Later”.  There was only one problem. Overanalytical human that I am, I silently argued for purchasing every wig in my cart.

The straight short one for running errands. The wet and wavy one for the nights out. The ombré blond curly one for daily summer wear.  The wigs were vital in my wardrobe.  I was never fully dressed without the wig of my choice.

I purchased everything in the cart.  No guilt.

Adding to my wig collection is like adding food at a swanky vegas buffet to your plate.  You never know how it might turn out, but it's generally pretty good.  Now if I could only get guys I date to stop pulling on my wig when trying to hug or kiss me, dating would be perfect.

Unless you are comfy with half alopecia/half normal hair, keep your hands away from my hair and be gentle please.  One thing I know for sure:  the only wigging out I will do is buying a wig and putting it on my head.  Wigging out due to relationship drama is a clear and present NO.

Peace and calm only.

Read on to Note 6.

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6.

Self-fulfilling prophecy?

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Don’t put me on a sports team.

I’ve never been a great athlete or even a good one. I’m great at creative pursuits. I have decent hand-eye coordination. While I’m very competitive with myself, I’m not sporty. I’m more of a blend of Posh Spice, from the widely popular Spice Girls and any diva.  Getting sweaty and winded on a team isn’t my idea of fun.  I’ve always enjoyed working out alone with a carefully curated playlist saved on my 80GB black iPod.

My playlist starts slowly with the “Eye of the Tiger”, and as my heart rate increases, my song tempo increases. “I Would Die for U” by Prince, for example, is near the peak of the playlist as is “Holding Out for a Hero” from the old-school Footloose soundtrack. Lots of electronic music. Dubstep. Prodigy. JLo “Waiting for Tonight Hex Hector mix. My playlists were intentional and eclectic. Like riding a rollercoaster. Slow going up.  Lightning fast going down. Music saved many a workout in 2013-15.

In 2014, I participated in Weight Watchers, and I was losing weight steadily. Dropping between 3-5 lbs a week at weigh-in. After decent success without working out, I hit a wall. Around 150 lbs. My weight plateaued.  The scale would not budge for about 6 weeks.  After much frustration, I visited my local gym, the Renaissance Fitness Center, and purchased a membership.  Frankly, the thought of working out with other people around me was uncomfy. I was far removed from dance class with ballet, tap and jazz, where I excelled as a young girl.

In the winter of 2015, my gym publicized a new program called “The Biggest Loser.” I didn’t watch the television show often, but I knew the premise. I enrolled out of the desire to beat my current weight plateau and broaden exercise and eating knowledge.  Perhaps I’d discover something new.

As you might imagine, I was the picture of health at that time.  If I didn’t share my lupus life, no one would know.  The toxic boyfriend, systemic lupus erythematosus, faded into the background. Thoughts of healing and remission lay ahead.  All was quiet and calm. No random pop ups. No worries. No drama.

Fridays and Saturdays were devoted to Weight Watchers in the morning.  Sundays after church were dedicated to the Biggest Loser challenge.  The coaches for the challenge required us to participate in most of the events to qualify. On the first day of the Biggest Loser, a Sunday afternoon, a small crowd of around 50 people plus the staff and trainers gathered in one of the workout rooms at the gym.

As usual I sat alone listening intently to conversations in the room.  Participants chatted about programs they completed, diets they wanted to try, and personal experiences. I, in my early thirties, did not have stories about children, husbands, day care, or mommy flab.  I stayed quiet, silently collecting experiences to add to my mental Rolodex.

The excited staff members explained the journey.  I don’t recall how many weeks the program would be, but I recall a myriad of activities and weigh-ins planned for the group.

The staff divided the larger group into small 5-member groups.  Begrudgingly I thought, “looks like I’m gonna have to be social.”  Not a fan of small talk.  I enjoy deep, lifegiving conversations.

My personal trainer, Jolene, was the leader of my group.  Good! Jolene was a familiar face who trained me at the gym.  She also taught Pilates.  She was long and lean, direct and honest.  Jolene seemed to be the type of person every “nice girl” needed as part of her friend circle. I’ll never forget the moment she gave me advice that continues to stick with me.

The gym was busy and Jolene elected to train me outside on the large sidewalk in front of the gym.  People were leaving and coming.  They wanted to walk on the sidewalk.  When a person walked by us, I moved out of the way, repeatedly.  After moving out of the way several times, Jolene said, “don’t move out of the way.”  Taken aback, I thought to myself “well should I just stand here and possibly bump into someone?”  Jolene said, “they can walk around.” True.

Passers saw my trainer and I working out, but still wanted to “get by” instead of politely walking around us.  Her words were imprinted in my mind. From that day forward, I decreased my need to make others comfortable by moving out of the way.  Suddenly making myself small and “good girl” likable didn’t appeal as much.  Inner growth took place.

Over the weeks to follow, I focused on the lean life.  I cut back on delicious treats I indulged on the WW points system.  In love with McDonalds ice cream cones, I ate several a week soon after weigh-ins.  I gave up the ice cream cones, diet sodas, and dairy.  Happily participating in a 40-day fast, I eliminated more and more from my diet.  I walked more and watched my salt intake.  I stayed away from heavy weights, opting instead for lighter weights with more reps.

For some weeks, my small group would participate in challenges such as indoor rock-climbing, relays, workout stations.  I dreaded all that activity, but found some joy in indoor rock climbing daring myself to go higher, without a harness.  What a time of adventure.

At the final weigh-in for the Biggest Loser at my gym, I was leaner than ever before.  This was personal.  I wanted to reach 132 so that I could be a lifetime member of Weight Watchers.  At 5’2 and a size 6/8, I was tiny.  Gone were the large clothes from Lane Bryant.  Gone were the size 16/18 dresses.  I shopped at the Loft quite frequently, running up my credit card bill.  However, my mentality did not shift toward my new weight, as I was unable to appreciate my new size. More on that later.

After the final weigh-in, it was time to announce the winners of the Biggest Loser.  At that point, my attention zoned out.  I wasn’t in the running for winner or runner up.  I made it through the challenge, and now I was ready to move on to lifetime membership at Weight Watchers.   When I heard my name as the winner of the Biggest Loser, I was startled and flabbergasted!

Maybe they had the wrong person? Maybe I misheard? No.

I won the gym challenge. I was the gym Biggest Loser.

The room bursted into applause.  Apparently participants and coaches watched me through the process and seemed genuinely excited that I won.  Even now, years later, I am still shocked that I won.  I joined the challenge for myself, not to win the whole challenge.

This win took place half a year before my hair fell out never to return due to a lupus flare later on in the year.  This win happened, but I never quite made it to lifetime membership at Weight Watchers.  I could not sustain the weight loss, especially when I began dating again.  I started psyching myself out and spending less time in the gym.

Within the next few years, I regained all the weight.  I never fully saw myself as successful with workout and weight loss.  I did not give myself enough credit. My mind and body never aligned with the work I did.  Therefore I reverted to how I saw myself.  My body followed my mindset.

Lesson learned:  Work as diligently on mindset and mental health as you work on weight loss and body changes.

Thanks for reading.

Read on to Note 7.

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7.

Hello anxiety to the 10th power

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Panic. 

I can’t find my prescription bottle of prednisone. Fear. Pain and arthritis reverberate through my bones. Joints feel like I’m trudging through quicksand in the never-ending desert. 

Out of town for a work trip in the desert, I packed my overnight bag and medications meticulously.  A few days earlier I could barely walk. The sores on my hands and feet were painful. That’s discoid lupus.  Lupus rash. My rheumatologist added 10mg of prednisone to my medication regimen until a new lupus medication was authorized by my insurance.  

Essentially I live in-between three worlds.  The first world is who I believe I am. The purpose me. The growing me. The struggling me. Past present and future. It’s the amalgamation of who I am.  The second world is the presentation to others. This includes what I show to those around me, personally and professionally.  

The third world is lupus. It gets its own world and I’m not fond of it blending with the other two worlds. The third world includes the lupus journey, from my work as my snazzy, exhausted personal assistant, to calling doctors, remembering appointments, and following up with all the people in this world. Unless I’m extremely fatigued, I am my own chauffeur to the lab, doctor appts and pretty much everywhere else. My mom is traveling with me most times. I’m grateful for her presence. I am my advocate when I need to push for additional testing or if I have questions (which I almost always do). I am my motivation coach and dietician and researcher. Doctors, nurses, therapists, coaches, pharmacists. They all live in this world. Thankfully we don’t live in the same house, or I would have bailed long ago :).

Within the lupus world is also my relationship with lupus and what I feel and think about it. From mirror moments of frustration to another annoying topical medication, I have lived with lupus nearly 20 years, and I am laser focused on ensuring I successfully navigate the third world.

It’s my second job and it provokes fatigue. 

It’s no wonder that laundry, dishes and pretty much everything household (even my makeup drawer) might come last on my list of priorities. My head and calendar are full of must-do yesterday. 

Ok, back to this panic and anxiety vortex. Perhaps you’ll identify. 

If you take prescription medications for any condition and it’s time to travel, there are very few things worse than discovering you left the medicine behind.  When the prescription is one you have to take to keep going and minimize pain and flaring, it’s an epic disappointment when it’s not in any of the luggage. 

Helloooooooooo. Where is it?!

And it’s not like I had a bunch of luggage this time. I was determined to lighten my load because the pain in my joints was strikingly, unexpectedly noticeable. I wasn’t up to pour more fuel on the fire. 

By noon, the day I traveled for a work trip, I sat in my office out of town in the desert. I was between clients. Joint pain and fatigue increased significantly. I reached in my medicine bag under my desk and looked for my bottle of prednisone. No prednisone. 

In walked a client, on time. There are times I want clients to be late. This day was a “please be late or reschedule” day. I set an ambitious schedule to see 10 new clients in 36 hours. With a sigh, I leaped into therapist mode, in pain and unable to continue looking for the prednisone. It consumed my thoughts.

Right now you may be thinking I could have asked for a few mins to continue looking or apologized and rescheduled. You’d be right. Crushing the hustle mentality is a daily work, and acknowledging it is half the battle. However, the medicine was definitely not in my backpack nor my suitcase, nor my toiletries bag inside my suitcase. 

A few hours later, a client messaged me that forgot her scheduled appointment. Success! Though I was looking forward to the connection, I was now at a 5/6 on the pain scale and heading upward. I was screaming inside, and emotionless on the outside. No one would know, unless they deeply knew and understood me.

My negative thoughts began to spiral downward into the dark abyss. 

I’m in the desert. There’s no CVS near here. I have to drive 10 miles to the nearest one. It’s dark soon. I’m not trying to be out there alone in the cold dark desert where the gas station doubles as a restaurant and fast food is nowhere to be seen. What if I can’t get the prednisone tonight. Maybe I should drive home and come back in the morning. Ugh how could I not pack the one drug I need?! Omg I’m going to be sick!!! 

Pain radiated through both hands up to my elbow. After heading to look under the seats in the car and in the back hatch. Checked all the pockets of the suitcase. Back inside, looking more and more. I called and asked my mom if she had seen it in the apartment. She did not. Then I stopped and prayed. 

I prayed, “God, please help me find the prednisone.” It was a simple prayer. But, I was begging for relief. The pain was worse. I felt like quitting and leaving immediately. Taking a deep breath, I decided to look inside my lunch bag. 

When I opened the bag, the prednisone was there! Prayer works. I had to slow down and breathe and suddenly there it was. God has never failed me. 

While it took hours for me to feel better, I felt like a new woman. I saw all of the clients scheduled, even the one who forgot her appointment initially. And, I recognized my error was separating the prednisone from the rest of my medications. 

The next day as I headed around the mountains once again, leaving the desert, I made a promise to myself to pray before freaking out. 

I might not always remember to have a chat with God in the toughest moments I face, but I try and try again.

That’s life.

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Welcome to my new blog.

Affectionately entitled “notes on a toxic boyfriend”

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• read – grab a cup of hot tea or coffee… notes 1 to 7 are up for you to read
• start here
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Lupus Foundation of America

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