Lupus?! A wha dat?!

Just another emcee who gets free. Vessel of philanthropic vision fueled by theophilic purpose.

Tag: health

With gratitude

My sons and I, November 2020.

Three years ago I was in Brooklyn Hospital Center enduring what would become a three month long stay. I would spend Thanksgiving in so much pain that the last thing on my mind was a plate.

Everyday I would rise at 6, read scripture, and worship God while singing along with Richard Smallwood’s “Total Praise.” I would hold on until 9am or so when I knew doctors made their rounds, clamoring for updates on my condition. Could I go home soon? Would I make it home in time for my youngest son’s first birthday? I wouldn’t.

So standing in front of this hospital means another opportunity for me to show gratitude. You don’t have to make it. Tomorrow isn’t promised to any of us. If we’ve learned anything from 2020, impermanence stands at the top of the list. Life is truly a vapor.

Grandma’s Hands

You would have been 95 today.

You would have loved your great grandsons. They have your humor and your courage.

It’s been seven and a half years since you got promoted. I still randomly weep for you.

The tears have become more joyful recently.

I thought about trying to explain to you why I’m vegan now.

I think about how much I wanted to tell you I got in to a doctoral program. Same degree as grandpa.

And whenever I get really upset, and think about how you should still be here (Follett women live long, I’ve been told), I think about how tired you were. How much you’ve earned your rest.

I dreamed you once. You were young and still beautiful. With long ponytails and joy. So much joy. It’s all that comforts me.

For Aunt Phyllis/For Mother’s Day

I wish for you to dance again

I wish for you to be healed

I wish for you to feel the wind in your hair

I wish for you to be whole

 

I wish for you to laugh

A deep, belly laugh

The kind where tears fill your eyes

I wish they were the only tears you shed

 

I wish for you to remember

And feel warm

Surrounded by past moments

I wish for you to feel loved

 

I wish for you to sing

Sing a new song

Lift your head to the heavens

Remember your help

 

I wish for you to feel full

The completion of a life well lived

The ease of having run your race

You ran it well

 

I wish for you to know joy

Deep refreshing joy

The kind that puts a smile on your face

When it doesn’t make sense

I’ll do what I can

God knows I do what I can

To make it make sense

 

 

 

Persistent widow prayers

13 Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. 14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. 16 Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective. 

17 Elijah was a human being, even as we are. He prayed earnestly that it would not rain, and it did not rain on the land for three and a half years. 18 Again he prayed, and the heavens gave rain, and the earth produced its crops.

19 My brothers and sisters, if one of you should wander from the truth and someone should bring that person back, 20 remember this: Whoever turns a sinner from the error of their way will save them from death and cover over a multitude of sins. (James 5:13-20)

In 2015, as I rode the G train, I would listen to “Pray For Me” by Kirk Franklin. The message of the song resonated with me. I was a new father, living in a new apartment, and starting a new job. I needed all the prayer I could get. 

I loved how the song opened with vulnerability on Kirk’s part. His voice made me think of a wounded healer, someone who has been beaten down but remains hopeful. 

Those feelings have been fixed for me in this season. Walking with a limp but trying to lead, be an example, be loving. 

I’ve found myself despondent at times. Too often, reminding myself that I am not sick. Even though I am at risk, I am well.

Reminding myself of this, encouraging myself really, has become a ritual. Deepening my praise by showing gratitude for daily bread in the midst of global crisis.

I am grateful for the privilege of sojourning through quarantine with family. I am grateful for my job, my students, friends, extended family, and a community that still gathers–electronically–to worship.

I feel blessed in the midst of this storm. It’s a familiar place. So many days in the hospital, through both severe flares, were filled with laughter in spite of the physical pain and dire circumstance. But I know everyone is not there. I know many people are too smothered by despair to find anything to smile about.

I’ve been sitting on this writing since Holy Week. Since Lupus, I’ve been drawn to the solemn holidays that force you to consider mortality. Ash Wednesday and its reminder of how dusty we are. Good Friday.

I wanted to share this on Good Friday because Jesus’ cry of “My God, my God, why hast thou forsaken me?” felt more appropriate than ever. These words really ring in the hollowness of isolation. Jesus quotes the psalmist in psalm 22 and opens the door for all who feel rejected and alone. I believe that New York is the worst place in the world for loneliness. Perhaps one could render loneliness into solitude if they were, say, a rancher in Wyoming. But to be in a place so dense with population and to feel alone, is a uniquely cruel torment. 

 

It’s a call for us to innovate our love. Who is our neighbor and how can we be neighborly while socially distant? 

 

To love from a distance has become a critical form of hospitality in this time. We have to smile from a screen or behind a mask. This is difficult but I pray that you find new mercies everyday. I hope you discover new ways to love your neighbor. A radical love that pierces distances and binds us together. Let’s pray for one another. Let’s pray for people we don’t even like. Let’s confess our inadequacies. Confess our need. 

Pray for me.

I’ll pray for you.

What will we learn?

In September 2001, I was a tenth grader. I remember wearing my black and silver jersey, shiny black jeans, Raiders hat and And1 Moneys. I sat in the back row of French class and remember thinking this is the bluest sky I’d ever seen. Completely cloudless. A few minutes into class I remember the confusion of looking at that blue sky and hearing the worst thunder I’d ever heard.

Once we returned to school, my French teacher began to teach us about surrealism. We read French writers wrestle with this dream like state where the mind protects the body from reality. As we are in another reality altering event, I want us to take care in the lessons we learn from this. In 2001, we had an opportunity to learn about the love of our neighbor. We had moments where our smallness taught us about God’s bigness. Those lessons were momentary and faded in comparison to the ingrained lessons we kept. We kept the lesson that assured us that security is more important than privacy. We kept the lesson of fear. We kept the lesson that encouraged us to view the world through a lens of mistrust.

With this crisis we have an opportunity to love in a timely way. We can get closer even as we are social distancing. Let’s write to each other, send each other playlists, and create tournaments in video games. Let’s call our elders and make sure they are alright. Check on those of us who are always isolated. Let’s learn love.

Fight or Flight

Hearing about COVID-19 is like hearing about a tormentor’s return. It’s knowing you shot Michael Myers but not knowing where the body is. Or refusing to say Candyman. 

This week my sympathy for what was happening around the world became preparation. I wrestle with my fear, read Psalm 91 religiously and wash my hands even more. On Friday I could not place my feelings. This isn’t the sense of accomplishment and fulfillment that the last day of school normally brings. It feels so indefinite. A collective interruption that holds us all in suspense. It hit me during an assembly. The feelings were so strong I wondered if it were psychosomatic. I felt my chest tightening during the assembly. I tried to calm myself down but eventually had to go to my classroom early and just pray. This episode and the exhaustion I feel tell me how unwilling my body is to have another dance with the devil.

Since 2011, I have had pneumonia five times. All of my episodes of pneumonia are connected to complications from Lupus. I am too familiar with how exhausting those fevers are, how labored the breathing is, the terrible effects of the antibiotics, and the permanent damage it inflicts on your lung capacity. I often think of my lungs as a building and that pneumonia has rendered rooms in that building uninhabitable. 

I texted with the pastor whose church I am visiting and am grateful that he understood why he would not be seeing me until this situation is under control. I wrestled this week. Were my precautions an example of anemic faith? Does trusting God mean that I keep going to church and step boldly as if there is no crisis afoot? I’ve arrived at the theological juncture that informs me to demonstrate my faith through wisdom. The Lord brought the episode in the gospels where Satan tempts Jesus to mind.

In Matthew 4, the devil brings Jesus to the “pinnacle of the temple and said to Him, “If You are the Son of God, throw Yourself down. For it is written: ‘He shall give His angels charge over you,’ and, ‘In their hands they shall bear you up, Lest you dash your foot against a stone.’” Jesus said to him, “It is written again, ‘You shall not [a]tempt the Lord your God.’” 

It is not an act of courage, bravery or faith to go out and about during this time of social distancing. It is selfish and foolhardy. It is best to demonstrate your faith and trust in God by taking care of the most vulnerable among us. You may have the health to overcome COVID-19 but consider those of us for whom contracting the virus would mean increased hardship, or even death. I am trusting in the Lord and believing that God will grant us a hedge of protection. I believe that we can participate in God’s good work by being that hedge for our most vulnerable neighbors. It is what’s best. So, you won’t see me out and about for the foreseeable future but I am confident that this too will pass. God bless you and keep you, my friends. Stay safe. 

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

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.

 

An Unusual Partnership to Tackle Stubborn Diseases

The National Institutes of Health, 10 large drug companies and seven nonprofit organizations announced an unconventional partnership on Tuesday intended to speed up development of drugs to treat Alzheimer’s disease, Type 2 diabetes, rheumatoid arthritis and lupus.

“We are getting together in a way that has not happened before,” Dr. Collins said in an interview. “We are bringing scientists from different perspectives into the same room. They will leave their egos at the door, leave their affiliations at the door.”

 
 
Brian Mooney

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