May is Lupus Awareness Month and May 10th is Awareness Day, it is time and an opportunity for the lupus community to join together across the country to raise funds and awareness of the physical, emotional and economic impact of lupus. Lupus is a disease that occurs when your body’s immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. Mompreneur, Ameniki Omotola has been been living with Lupus since 2004, she was diagnosed her sophomore year in college.
“17 years a slave”, as she calls living with Lupus. When she was first diagnosed in 2004, her lupus was raging – swollen feet, weakness, and blacking out with no appetite. At this time she was staying with her mother in Tobago, she was admitted into the Scarborough Hospital and doctors told her mom, it was touch and go. Her recollection of some of what happened is low and she had to rely on her mother’s story, she just remembers being on the hospital table with doctors talking over her, being airlifted to Trinidad, and then staying 21 days in Mount Hope Hospital, Hibiscus Suite, fighting for her life. Her close friends were all really afraid for her life and they told her they were afraid to even answer their phones because they thought she was basically dead. She thanks her mother for her grit and positivity during this trying time and truly believed her prayers helped her stay here on earth, she stood by her bedside every day, a total rock in that frightening time. Those 21 days of fighting for her life impacted Ameniki, to live her life like it’s not promised, as it truly isn’t.
Ameniki’s treatment/management of the condition includes at least six- ten pills per day depending on the medication dosages. There’s often a shortage of a particular medication in Trinidad and Tobago. She uses either Cellcept or Plaquenil based on availability; Plaquenil has become scarce at a point in time, when it was thought to be a cure for CoVID-19. Often she has to scout various pharmacies, go from POSGH, to Scarborough Hospital to get Cellcept especially, since this medication isn’t carried in local pharmacies., or you make a friend who is a doctor in a local hospital so that you can get your medication. Cellcept is the one medication that helps her function at her best, so she is sometimes panicked when she doesn’t have access to it, a no Cellcept day can equate to complete paralysis for Ameniki.
She laments that the condition has affected her mom guilt the most, lots of days she can’t play with her daughter, Amaziah, as she would like or take her to the beach as often as she would, due to the excess sunlight which triggers ultra-sensitivity, causing rashes, as well as itching and burning skin.. Now with the pandemic, it’s like a constant obstacle course, from checking homework, doing projects, logging into zoom, all of it, is hard. Brain Fog is real so she writes everything down and writes it down again. But Lupus also has enabled her to set better boundaries, she has routines and schedules which have led to a better quality of life and made her truly align herself to projects and clients that she loves. She has upped her self-care game is EPIC, she buy candles, says NO and block and delete folks much faster now.
Her young daughter knows and understands that mommy has lupus, she is her little helper, bringing meds and reminding her of stuff when she forgets. She does get upset at times when Ameniki cannot play or has to rest but she weathers the storm like a true champion whom Ameniki is proud of.
Living with Lupus in the time of COVID-19, one word to describe how Ameniki feels anxious, but it has been so much more than that. Being a single parent and knowing that if she got COVID that more than likely her daughter would get it, since they are ALWAYS with each other feels like an insurmountable challenge at times. They are always washing hands, drinking ginger tea and doing curb side to avoid crowds. COVID-19 has definitely been a test on for Ameniki, “I used to be afraid to even go to the Market, to the Mall, even visit friends, but over the course of the year, I have grown stronger in my faith that all will be ok and even if it isn’t I have the tools to support me through it” she states. She has since gotten vaccinated due to her condition, but this was no small feat. On Vaccination Day she got no work done, and for a person who loves to work, that was unheard of. She was full of anxiety and overthinking the worse possible scenarios but when she left the vaccination site, she shed a little tear. She is tremendously grateful to be vaccinated and to do her part for the safety of herself and daughter, she now feels like she can exhale a little while still being extra cautious, keeping her distance and staying indoors.
There are HUNDREDS of invisible illnesses, maybe thousands, Lupus is definitely not a death sentence but the load of carrying the disease certainly becomes overwhelming. Ameniki states, that you when anyone with this disease smiles, know that smile has millions of tears behind it. “Just because we carry the load so well, doesn’t mean it isn’t heavy!” She asks for the general public to be supportive, support isn’t always financial but a heartfelt conversation is worth it as well.