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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
Recently, Ria’s mother’s blood pressure climbed dangerously high. Her father is scheduled for a triple bypass later this week. It’s been an unusual few months for a woman who has been on the other side of the hospital bed more frequently than not for the last five years.
Because that’s who Ria is. Ria had been feeling sickly for about a year back in 2011. She had GI problems and temperature sensitivity among other physical symptoms. Also, she had been working as a manager overseeing 50 sales representatives. The stress was constant and the pressure quite high. She had become depressed and gravely anxious. She got a bad sinus infection and was put on antibiotics. Her back started aching; she could barely move. She couldn’t sleep and her muscles were taut. And then, a week after the infection, she desperately needed to go to the bathroom. She got out of bed and fell. Her body felt numb and tingly, and at the same time, in excruciating pain. She made it to the bathroom but couldn’t relieve herself. She felt a fever rising, and climbed into the tub to bring her temperature down. Her mother found her sobbing in the bathroom and took Ria to the emergency room.
The drive to the hospital felt surreal. When they arrived, Ria had to be wheeled inside in a chair. Her bladder was killing her, but she couldn’t make anything happen. When she was finally catheterized, the nurses pulled out over 1,000 ml from her bladder. She was subjected to a series of MRIs, and was misdiagnosed with a severe form of Multiple Sclerosis. Over the next few weeks, she was given a plethora of antibiotics and steroids. Despite contracting C-diff in the hospital, and still suffering with urine retention, Ria began to walk again and was released with a single prescription for Lyrica.
She was grateful to be home. A few weeks later, Ria had a horrible relapse that attacked both her spinal cord and her brain. She went into a semi-coma, spoke backwards, had spasms in her hands and her whole body shook. Her temperature plummeted to 91°. The nurses were clueless. Ria’s mother demanded a full-body MRI. She was admitted into an urgent-care unit, where the nurses worked to bring her temperature up to normal, but there were no doctors on hand. Ria’s mother insisted she be transferred to the hospital at UCLA.
There, as Ria lay in bed half conscious, seeing only white and hearing tidbits of conversations, both her parents carried out their own research. When Ria regained consciousness, she was paralyzed from the chest down, but for her subordinate left arm. She was given plasmapheresis, had numerous spinal taps, and was misdiagnosed with ADEM. Her mother knew better. Again, Ria’s fierce and loyal mother maneuvered her way to the MS specialist, who began to take charge of Ria’s case. And at last, Ria was diagnosed with NMO.
When she was finally released from the hospital, Ria was happy to be able to celebrate her birthday and Christmas at home. She didn’t know how badly her body had been damaged, and she didn’t know what the future would bring. But Ria was again grateful to be home.
Over the next years, she was treated with various levels of success with most of the NMO treatments currently available: Plasmapheresis, Rituximab, IVIG, CellCept, Imuran and Myfortic and steroids. Due to terrible allergic reactions, some of these drugs almost killed her.
Ria worked hard on occupational therapy, physical therapy and Reiki. Her church pulled together to purchase the equipment she needed in order to live at home. She had two years without a new attack.
But she was radically immune suppressed and suffered periodic urinary-tract infections which almost killed her. She also had Osteopenia and early Osteoporosis, so when she fell out of a low bed onto a carpet, she nevertheless broke a few bones. From that point on, Ria refused to take steroids.
In May of 2015, Ria had a bone infection called Osteomyelitis above her Coccyx. Two years later, she is still restricted to bed rest, as her mobility was further compromised and the infection spread.
But Ria is not resting. She is living up to her own motto, “stronger than you know, fighting NMO.” With her mother, she is promoting legislation (H.R. 326) to amend the Public Health Service Act to create a National Neuromyelitis Optica Consortium to provide grants and coordinate research. (Please sign and share! https://www.change.org/p/cindy-fincham-please-support-barbara-lee-s-bill-h-r-326-the-neuromyelitis-consortium-act?recruiter=504724904) On her last birthday, Ria was named a Transverse Myelitis Ambassador. As such, she works to raise awareness of TM and to further research. And personally, Ria hopes to be able to attend Project Walk – a paralysis recovery center in Santa Monica.
As told to Gabriela Romanow, 10/1/17
