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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
In 2008, Maurita suffered a bad stomach virus, but she worked and studied through it. Almost a year later, it happened again, virulently enough this time to prevent her from working. She fell out of her truck, fainted, lost track of time, and kept vomiting. Though she had insurance and saw a regular doctor, in a three-month period in late 2009, Maurita was in and out of the emergency room ten times.
Tests came back normal. The doctors said it was too much stress; it was all in her head; she was overweight. Then, Maurita started seeing double. Her eyes would cross involuntarily, and her left eye had trouble focusing. From this, she got terrible headaches. She went to an ophthalmologist, who thought Maurita was wearing sunglasses indoors because she was sensitive to light, but after testing her, she sent Maurita to a neurologist.
They thought she might have aggressive lupus, MS or a brain tumor. She was now in a wheelchair and could barely see. So when Maurita’s fever rose to over 102°, they admitted her to the hospital. She had yet another spinal tap and MRI; there was a lesion. A doctor pulled out a pamphlet that described what he thought she had – Relapsing-Remitting Multiple Sclerosis – but Maurita was too scared to let the information in. She just wanted medications that would make her feel better and allow her to return to work. Instead, she was given intravenous steroids and kept in the hospital for over two weeks. During that time, after having lost a lot of weight because she couldn’t keep any food down, she gained 45 pounds from the steroids and stomach medicine that enabled her to eat.
Two weeks later, Maurita felt better. Almost back to normal. Federal Express would not hire her back because her ankle was still compromised from the spill she had taken earlier, but she was able to return to a local vocational school in administration of justice. Soon after, though, when taking her brother to look at the University of Las Vegas, she decided to enroll there for the following year.
She started at UNLV in November, 2010. Six months later, her symptoms returned. She was losing her vision as well as her balance. From February through July of 2011, she was in and out of the hospital. During that period, she was in a car accident caused by the other driver. The stress of that accident, on top of the heat in Las Vegas, exacerbated her headaches. Her vision deteriorated such that she had to leave school. She got new glasses. She and her son moved back to California.
In early 2012, Maurita had swelling in her eyes and her brain. Her MS diagnosis was reaffirmed. She lost all vision in her left eye, and was told her nerve there was completely shot. She had only peripheral vision in her right eye. She was kept in the hospital until the swelling went down.
When Maurita finally left the hospital that time, she moved back in with her parents. She was 28 years old, and didn’t think she’d be blind forever. In fact, some vision did return to her right eye. Her parents wanted Maurita to stay home and work on getting better. That wasn’t Maurita. She wanted to work and to study. She and her son moved out. She went back to school while taking Copaxone for MS. She baked for family, friends, and for the homeless. Her health did not improve. Vision in her left eye was completely gone, and she kept losing her balance. She walked with a cane.
In 2012, Maurita got a degree in substance abuse counseling from another vocational school. Part of the reason Maurita decided to get this education was that she was on so many medications, she wanted to understand them and issues of addiction. Later that year, Maurita was told her left eye would never see again. She was enraged. She was young, had been relatively healthy until recent years, and she was sure her sight would improve. She felt so bitter that she didn’t return phone calls from a neurologist. This doctor was so persistent, though, that Maurita finally saw the woman who finally gave her the correct diagnosis of NMO. Maurita already knew. She was practically a professional student. She read about MS and knew her symptoms didn’t quite fit. She discovered NMO online. She knew. This doctor confirmed her theory, and immediately put Maurita on Rituximab.
Maurita calls Rituximab “the worst best medicine ever.” While on it, her body hurt from head to toe and she was exhausted for months after the infusions, but she didn’t relapse for a year and a half.
Meanwhile, $45,000 deep in school loans, Maurita wanted to get that elusive degree from a university, and worked for it with everything she had. When she did relapse in April of 2014, she was losing balance, slurring her speech, and feeling off. Doctors prescribed plasmapheresis every other day for two weeks. She stayed in the hospital for the whole course of treatment. But the next spring, Maurita was a proud graduate of the University of Las Vegas with a degree in criminal justice.
In 2016, Rituximab started giving her serum sickness – it was as if her body had developed an allergy to the drug. Maurita developed breathing problems, she had terrible chest pains and coughs, and her ears drained fluids. She was put on Imuran, which cursed her with new symptoms every few weeks, including nausea, fatigue and hair loss. After that, her doctors prescribed Ofatumumab, another monoclonal antibody to CD20, like Rituximab. Outside of initial fatigue, she is feeling great on this medication.
Maurita did have a relapse this year, after five years without one. But she got over it, and has been feeling well and strong.
While dealing with partial blindness, mystery symptoms, false diagnoses, wrong medications, repeated relapses and many hospital visits, Maurita managed to take care of her little boy and give him a baby brother. She got three degrees – two from vocational schools and one from a university. She worked as a substance abuse counselor and in juvenile probation. And she kept baking. She pushed through and carried on. Again and again. Her education exhausted her and many people closed doors in her face due to her disability. She had to make a life for herself. And she did.
Her new life is as a stay-at-home mom with a home business. All her life, Maurita had baked. She donated and even sometimes sold her goods. In fact, while in Las Vegas in 2015, Maurita was named a ‘Shining Star’ by Fox 5 TV for baking for the homeless on a regular basis. Now, she is making a business of it, with her ‘Unbutton Pies’ (“pies unbutton mouths, smiles, and hearts”), specializing in cheesecake.
In looking back on the last decade, Maurita acknowledges the pain and the challenges. But she also knows that she accomplished more during this time than in any other period in her life. She has no room for self-pity, and is dedicated to giving back. She knows how it feels to be at the bottom, and she knows what it’s like to need help. She figures that, having gone through a “dark part of life that was worse than hell”, and not only coming out of it on the other side, but working, studying and loving through it, she just has more work to do in this world.
And with her business, Maurita is committed to making people’s lives a little sweeter.
As told to Gabriela Romanow in June 2019.