Lupus?! A wha dat?!

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Category: A Wha Dat?!

Remember

Had the chance to visit Charlotte for my friends’ wedding. I hadn’t been there in a few years, since Coltrane was in the womb. Bri and I lived there until 2012 and previously whenever we would visit, we felt the weight of regret. We’d think about the house we wanted to buy, the lives we sought to lead, the friends and communities we were leaving behind.

It would especially burn whenever we visited Trinity. Trinity Episcopal School is unlike any other place. Even on this trip, as we greeted friends, walked around campus, and worshipped during community chapel, we left with the hope that we’d find a school like Trinity for our boys in Brooklyn.

Charlotte is a lovely city. At one time we thought we’d spend the rest of our lives there. We wouldn’t be upset if God led us back there later in life. I was thankful to revisit a chapter in our lives that is highly significant without feeling the burden of unfinished business.

It was the first road trip Bri and I have taken since the last flare-up. Life altering events give you a chance to see the impossible in the ordinary. Sitting in the car for more than an hour would’ve made me anxious in January yet we were able to retrace our old haunts on the highway, including the Natural Bridge in Virginia. Truly, in all things, give thanks.

Times feel much simpler now. I’m only a couple of weeks away from returning to work. I have an endoscopy tomorrow (following that bloody vomit episode from April).

Cannot thank you enough for your love, support and endeavoring to understand. May you, in your time of need, have a community that reflects what my community has been for me.

 

With love,

 

Chris

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Chasing Normal

It is hard to believe that I have six and a half weeks until I return to work. There’s a mix of excitement, fear, and “today has enough trouble of its own”  coursing through me. Some days I feel bursting at the seams, ready to get back to normal (though there is no such thing) and other days I feel like I have no sauce at all.

I had a setback two weeks ago on a Friday night. I felt ill most of the day and had no appetite. Foolishly, I took my medicine without eating dinner. Around midnight I went to the bathroom and vomited a sea of blood.

I told Bri and we made our way to the hospital (not before vomiting for the second time in an hour). As we walked into the emergency room I began to feel chills and body aches. It scared me because it was the most ill I’d felt since the fall. We sat in the waiting room and I felt my confidence about life and chasing normal, fade.

The hospital kept me overnight for observation. Thankfully I did not vomit anymore. They discharged me with orders to follow up with my primary doctor and my vitals were good.

I was happy to be sent home but I’d be lying if I didn’t admit that being back in the hospital shook my confidence. I told Bri that I couldn’t think of five straight days where I didn’t feel ill or fatigued or just not right. So, as I used to do when I wanted a fresh start, I got a haircut.

During the flare-up in the fall, I stopped shaving my head because among everything else, my scalp felt very damaged. I could see scarring on my face during the flare-up and assumed the same was happening under my beard and hair. My hair grew to a point with very different texture than normal but my beard was wild and untamed. I thought about letting it grow until June but then it started to annoy me. I brought it up to my rheumatologist in March and he did not see the danger in cutting my hair so I was happy to shave again. My shaved head and cropped goatee revealed my autumn scars but I am kind of glad to have them. Lupus can be such an invisible disease and the scars help remind me that I am not making this up. They remind you of what you’ve been through. Scars can be beautiful.

The Waiting

Most of life is waiting anyway right?

Scripture tells us to “Wait on the Lord and be of good courage,” (Psalm 27:14). It makes sense to couple patience with courage because waiting can really weather you. One of the things about illness that I actually appreciate is that it eliminates the façade of control. Things aren’t completely out of your hands, just mostly.

I have found myself answering “How are you?” with “I’m okay,” a lot more than is probably polite. This recovery is like a dance, two steps forward and then one step back.

I had my second round of Benlysta last week. Next week is my last round before we move to monthly doses. The treatment hasn’t worn me out as much as I anticipated. The first infusion had me in the bathroom all weekend, the second just made me sleep a lot.

My coumadin appointments are getting spaced out also. Initially, I had to see the doctor every week as we figured out the right dose of warfarin. This was tricky because other medicines were being reduced or introduced so the INR number (how they measure your blood’s ability to clot) would be all over the place. Since it has been the same for three appointments in a row, they are able to put a little space in between my appointments.

Next week I meet with my Cardiologist and GI doctor. Rheumatologist told me I’m healthy enough to cut my hair so I think I might finally shave haha.

To love and be loved

3 Then the Lord said to Satan, “Have you considered My servant Job, that there is none like him on the earth, a blameless and upright man, one who fears God and shuns evil? And still he holds fast to his integrity, although you incited Me against him, to destroy him without cause.”

4 So Satan answered the Lord and said, “Skin for skin! Yes, all that a man has he will give for his life. 5 But stretch out Your hand now, and touch his bone and his flesh, and he will surely curse You to Your face!”

6 And the Lord said to Satan, “Behold, he is in your hand, but spare his life.”

Job 2:3-6 (NKJV)

Feels fitting that Ash Wednesday and Valentine’s Day cross streams this year. In my last update I mentioned how chronic illness has made me think about mortality more than I’d like to. I try to mask it in gallows humor but it is sobering when jokes about your demise are left unfunny on the ears of those who love you. I don’t think about death from a fearful place. If anything I feel charged to enjoy each day and be fully present. Love and loss are inextricable. I refuse to love as if I am incapable of loss; my human limitation would pervert that love into a sort of entitled emotion that takes loved ones for granted. Instead I would rather fuel my love with an understanding of impermanence. I’m not going to look at the clock the whole time but my loved ones ought to be cherished. Prayerfully I am doing that.

I definitely feel loved in return. It’s not something I take for granted. The phone calls, visits, donations and acts of kindness my family and I have received from you all is beautifully embarrassing. Thank you for seeing me.

I have three appointments this week. The appointments with my primary doc and nephrologist went really well. My creatinine level, formerly as high as 6.6, is now .98. It feels good to see your doctors tell you that your health is heading in the right direction.

After my primary doctor appointment, I got a call from my cardiologist. The last echocardiogram I did still shows something on my valve. As a result, I am scheduled to get a transesophageal echocardiogram in the upcoming weeks. Pray for me as I pray for you.

Chris

Supermarket Verses

Was it you?

That used to scold me

when I’d put items back

in the supermarket

out of place?

Can you believe how she looks now?

I bet she won’t stop working out

until she gets definition

on her abs again.

I heard she wants to lose ten pounds.

That’s too much pressure.

Just live.

 

Our cashier isn’t interested in the exchange of pleasantries.

Her loss.

But I get it.

Full day of work, last shift. It sucks.

Don’t know how much I’d smile.

From the looks of my grocery bagging skills, don’t know how much use I’d be either.

 

You always make me bag!

I never understood that.

The times when you are paying I get it but I had money in my pocket this time!

We’re standing in the wrong places.

 

I must be lousy.

The cashier bags these items with ease.

I manage to get three bags worth of groceries into the cart.

She seems so unencumbered by the categories.

Flawless. She knows to put kindred items into the bags. Record time.

She doesn’t smile but she packs these groceries with love.

Reminds me of Ms. June from the cafeteria in Davidson.

Made the best sandwiches on earth!

Three hundred kids in line, each one leaving with a piece of her love.

If you looked close, you could see her painting with mayonnaise and mustard smiles.

 

God I’m hungry.

 

This morning I tarried over dishes.

Mind isn’t clear if my kitchen isn’t.

And it made no sense to cook a good meal in a dirty kitchen.

I can’t fathom taking on the enterprise of straightening up when I felt so weak.

Two pieces of toast should suffice.

I’ll take them with a grapefruit juice so I can keep my constitution.

 

Downed medicine, to these dishes.

 

Remember how meticulous Prednisone made me?

I felt so focused when I came home from the hospital.

Everyday was a challenge.

A milestone.

An opportunity for victory.

I thought I died everyday.

 

Standing in front of the microwave, clutching my chest

Determined to set the time so at least when you found me

You would know when it was.

Shaking in the hospital bed, calling for the nurse.

It all felt over didn’t it?

Slipping away seconds before I belched something serious.

Both times.

So embarrassing.

But I learned that most things you think are gonna kill you

Are usually just gas.

 

I know you hate washing dishes.

Who could blame you?

Felt like every time we talked you were washing.

Were you the only one who had to do chores?

I hate your mom for that.

You seem like Cinderella to me.

 

There’s a method to my madness for sure.

I like to take utensils put them in a bowl.

With oatmeal crusted on the side, it’s ripe for soaking.

The cups are rinsed so the contents don’t spread in the dishwasher.

Nothing more disheartening–in the realm of kitchen cleaning–then having to rewash dishes.

Waste of work, wasted motion.

Lost time we can never reclaim.

 

It’s always a mountainous task.

The mountain becomes a hill

The hill becomes a drying rack

The rivers in the dishwasher roar

My work here is done.

I’m a fan of two sleeps

Yeah, I know, I make fun of how you sleep so much but it’s how i was raised.

i slept in a lot, don’t get me wrong,

but being in my bed past 8 made my grandma assume my sickness

dyam lazy, a sin less desirous than ailment


You remember how mad I was?

The whole day felt cranky.

Just left your parents house,

just left our lives in Charlotte

We were on our way

We must know 13 like the back of our hands now

traipsing from Maryland to the Turnpike

The heaviness of it all

Maybe I’m writing heaviness into my memories

I do remember getting mad

I told you to park in the driveway but you wouldn’t listen

You wanting to park on the street made no sense to me

this rage that i knew had to be displaced

an accumulation perhaps of debt for sins passed.

moments of insubordination, disobedience.

something wholly emasculating about not being listened to

Reminding me that I did not know what the hell I was talking about

 

Driving has never been my strong suit

Don’t know why I didn’t learn when most teenagers did

Young for my class, schooled in a different state than I lived

A hurricane of factors convincing me I didn’t need it

I tried it. Didn’t hate it but it didn’t make me come alive.

Only in my dreams that turned nightmarish.

Conscious of my feet

needing the break but growing heavy on the gas pedal

Reaching for the break with my left foot ensued panic

 

I panic with parking decks

Remember our trips from the seminary to the apartment?

Grew comfortable with the 3 mile trek

Til that brother came careening out of the parking deck

All I saw was doom impending but it wasn’t that bad

Save his lady yelling at me

Why sisters do that anyway?

Don’t they know words cut?

I mean, he was cool

I was cool

You were cool

But she had to trip

for no reason

 

After that I hated driving again.

took a while for me to get over how it felt

when my cousin yelled at me for losing focus

I get so anxious about driving my hands turn blue

only way I calm myself is remembering I drive for you

 

I never felt anyway about you being better than me

Always made me feel like we were progressive

You drive, I cook, I might stay home with the kids!

Could not care less about how it looks

I can be more than a good man for you, I can be a good human

Certainly felt neither when you stopped at the curb

 

It was so simple to me

Pull into the driveway

Say hello to the family

Bring bags upstairs

Come back downstairs

Eat

Fellowship

Sleep

 

We got out of the car

I thought about how I was going to announce myself

To Grandma and you flew upstairs without a word to anyone

I turned

Ready to make a joke with Grandma but saw she was sleeping

Never knew how she slept soundly on hospital beds

Dialysis so taxing she had no choice but wonder if she truly got rest

My aunt told me that she just had dialysis earlier and was feeling awful

Does dialysis ever feel good?

 

I came upstairs to sleep

Pretty tired but not enough to forget being pissed

Naturally, I gave you the silent treatment

It’s never as refreshing as intended.

One thinks silence puts the offending party in their place

shows them the essential nature of your words

cripples them through the verbal war of attrition

but sleep was your defense

the heavens rocked with the ripple of your snores!

my teenage ghost petrified by the tree chopping

How can I savor silence while you sniff electronic music?

Well played my dear, well played.

 

When you wake, I air my grievances!

Feign innocence then assume all guilt

A tactic oft employed but I am always jarred

You had no idea, you are the worst.

Of course neither is true

I’m caught preserving self-esteem and a righteousness that isn’t worth it

 

I was called downstairs

My aunt’s voice was wrong

Grandma no longer breathed

I couldn’t pray

I stood convinced that her chest would raise

Never thought it’d be this way

Always feared I’d be hundreds of miles away

A phone call bearing the news

I still think of her and lose myself

It’s the triggers of rye bread

the reruns of Walker, Texas Ranger

So random the grief and the regret.


I remember when I knew I loved you

Felt it stirring for some time you know.

The slide from being cool and feeling healthy

 

We didn’t speak every week

Then I saw you everyday

Not able to imagine without you

 

Can I love without loss?

If I let on will you be taken away?

I’m a Job of sorts.

 

That day I made up my mind

To tell you how I felt was so beautiful.

We drove over to the next town

(Votin’ in the primaries)

One of those days where we matched by mistake.

Black shirts and khaki shorts

Made history and strolled.

Down the avenue was a dog and his man

I coolly stepped in front of you

Easing us off the sidewalk and onto the grass

Said peace to them both and stood in front til they passed

A big deal for me.

 

I am not far removed from german shepherds

Walking on blocks had to make sure none were loose

Recess interrupted by pitbulls and rottweilers

Made me run and find someone worth standing for.


I was someone once.

Full of potential.

 

Funny how potential is so much like credit.

Don’t know how good it is til it’s used up.

 

I used to fear peaking early.

But laying in that hospital bed

certain it was all over made me content.

 

If this was how it ends then I used my time well.

I loved.

My regret, my reminder of failure

is to know death means I’m leaving you.

I would never give you the life we hoped for.

You’d have the stench of widowhood.

Would you remarry and find the life we were looking for?

 

Would suitors handle you like produce

Discover this imperfection

Deem you less choice?

Did I ruin you?

 

It’s the triggers you know.

So random the grief, the regret.


Breeze

Nights like these I miss the breeze

You don’t know how I bleed for you

Swing from poplar trees for you

The silence so violent

The summer so arrogant

I sit and I long

I long for the breeze

 

Who knew leviathans brood by oceans?

The arms that nursed you curse me daily

Fountains of iniquity that raised you to fail me

 

Yet in spite of these frailties we thrive

with dancing shoes

with cold sweat

with short breath

falling hair

failing lungs

my

heart

beats

 

Oh cactus, you stubborn fool!

A desert for your kingdom

A lifetime with no reprieve

I too dream of home untarnished

Gentry dreams make me grieve

 

My home has no garden

No shelter from trees

But still I find comfort

when I’m blessed by breeze

Yuh lazy

“Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest.”- Matthew 11:28

It’s been a week. I find myself, at this stage of recovery, able to handle one big errand everyday. Most of those errands are doctor appointments but some days I have felt adventurous/energetic enough to do a little more. Last week Tuesday, for example, I went to the doctor’s office, the supermarket and felt good enough to cook dinner when I got home. It was great and gave me a slice of the normalcy we often crave when we are recovering. The next day I could barely get out of bed. If you’ve never experienced fatigue, it isn’t the same as being sleepy. With fatigue you can be wide awake but feel like someone is on the floor below you, pulling you under with an industrial strength magnet. The only thing you can do is rest.

This upcoming Monday will be seven weeks since I have been discharged from the hospital. My normal now is being home with my family while taking my medicines. I must confess that this was not initially welcomed by me. Every good day (and even the occasional great moment) led me to feel like I was “back” and ready to get back to normal. This overconfidence would soon fade as I got exhausted or met some difficulty (i.e the betrayal of my body by lupus) that would humble me. I recently got a new primary doctor and I was explaining to him that my former doctor approved medical leave for me until June. Without batting an eye or having a moment to reconsider, my doctor said “Yeah that makes sense. You need it.” It was a relief in some regards because I felt like it gave me permission to rest but my ego was like, “Man, how sick am I?”

So I say that this has been a week because I met with five different doctors. On Monday I met with my rheumatologist who said that my labs look good. He gave me information about a drug I used to take in Charlotte called Benlysta. Five years ago I took the drug via infusion at the rheumatology office but the drug is now available in subcutaneous form.

I met with my cardiologist on Tuesday. It was our first time meeting but we both felt like we had met before. I had gone to that office in November for an echocardiogram and my doctor remembered me because she sent an urgent message to my former doctor. The echocardiogram in November showed a vegetation on one of my heart valves that, if left untreated, could permanently damage the valve. Tuesday was the first time I learned this (no clue why my former doctor neglected to tell me this information) and the first time in a few weeks that I got really scared about my health. Chronic illness has made me more comfortable with my mortality but even still I was like, “Bacteria on my heart? How does that happen?”

My cardiologist does not want me to worry about this. She has scheduled another echocardiogram for me and has me wearing a heart monitor for a week since my heart is still working really hard. (On the day of the appointment, walking from the car to the doctor’s office felt like I had just finished playing full court basketball.) I get fitted for the monitor on Monday and figure that it will enhance my playtime with the boys since I’ll look like Tony Stark with it on.

Wednesday was the busiest day of the week as I went to the nephrologist and coumadin clinic. I first met my nephrologist while I was in the hospital. Very happy to report that my kidneys are functioning properly. He checked me for swelling in my feet and legs (a big problem even a week or two after I came home) and I have none! I asked him about deodorant (they come with warnings about kidney disease) and alcohol. He told me that the deodorant was fine and to only have one drink this weekend (celebrating Bri’s birthday!). Well I had my one drink, a refreshing Blue Moon, and was in bed all day Saturday. Not that I was ever a big drinker but I will probably avoid alcohol going forward.

I didn’t have any appointments on Thursday so I was able to visit with one of my friends. It felt so good to walk outside by myself and sit in a coffee house. (Oh! How could I forget another landmark of the week! I took a Lyft to a doctor’s appointment independently.) This recovery is filled with ordinary moments that feel like real breakthroughs simply because of how difficult life has been.

Lastly, I met with my GI doctor on Friday. While I was in the hospital, I had an ulcer in my stomach that bled enough for the doctors to cauterize it. I have not experienced any discomfort since but he wants me to finish my omeprazole and do a stool lab in the upcoming weeks.

We celebrated Bri yesterday (truly, I thank God for Bri everyday) and were supposed to have a date today but that fatigue hit me like a ton of bricks. I felt like crap emotionally because I really wanted to go out today but the rest was necessary.

 

Weekly Wha Dat?!

Blow is the James Baldwin of our time. Using his gifts as a storyteller, he writes of poverty, race, bullying, gender and sexuality – the issues, struggles and process of self-discovery of our era.” 

“When we look at the life of Moses, we see humility isn’t bashfulness. It isn’t self-deprecation. It isn’t about ignoring your strengths (or weaknesses). Humility doesn’t mean you can’t be confident. True humility is understanding where your confidence comes from—and that confidence should come from your identity in God.”

“I never thought anything like this would ever happen to someone like me,” Erika Schoonover said. Schoonover and her fiance Josh Wilberger have had to put off their wedding for years. Schoonover has lupus, and she’s already lived past the life expectancy for someone with her disease. 

” I do not relate these experiences to gain sympathy. I broke the law knowing there would be consequences. I tell my story because this is the side of the system we didn’t get to see where I grew up. In the wealthy suburbs of Massachusetts, our shared narrative told us that people who didn’t live where we lived, or have what we had, weren’t working as hard as we were. We avoided inner city streets because they were dangerous, and we relied on the police to keep people from those places out of our neighborhoods. Whatever they got, we figured they deserved. My total, unquestioning belief in this narrative was the reason I arrived in Roxbury, fresh out of law school, eager to incarcerate everything in sight.”

Senator Morrison Commends the Lupus Awareness Group of Guam

Lupus Walk for A Cure- South Carolina

Lupus Walk for A Cure planned for Saturday

Five Things People with Lupus Should Know Before Starting a Springtime Exercise Routine

http://www.lupus.org/blog/entry/5-things-people-with-lupus-should-know-before-starting-an-exercise-routine

Brian Mooney

Educator, Scholar, Author

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