Steroids Saved My Life but Damaged My JointsI turned 39 on February 8th, 2023. I celebrated my birthday in the hospital, recovering from my 2nd hip replacement. In 2012, I first got sick from, unbeknownst to me...Reactions0reactionsComments3 comments
An Advocate Was BornIn May 2016, I received my NMO diagnosis over the phone. “You have something called neuromyelitis optica, and we must treat you immediately.” I was confused, and I thought it...Reactions0reactionsComments0 comments
My Mental Health and Journey with NMOFrom the beginning of my NMO diagnosis until now, I’ve recorded every major portion of my rare disease health journey - from the doctors telling me I have an NMOSD...Reactions0reactionsComments3 comments
How NMO Changed My Perspective on Mental HealthPrior to my NMO diagnosis, I never took my mental health seriously. I was always told by doctors to basically "get over it" and that "things will get better." But...Reactions0reactionsComments2 comments
It Was A Really Good DayGood ol' Facebook sure knows how to bring the memories back, good and bad. The little feature on there every day, if you didn’t know, showcases memories from previous years...Reactions0reactionsComments0 comments
What Is Trauma-Informed Care?Traumatic experiences can be life-changing. It is well known that these experiences can have long-term health effects. In addition to mental health challenges, traumatic experiences can lead to substance use...Reactions0reactionsComments1 comments
NMO, Social Media, and my Mental HealthIt was pre-pandemic when I decided to start sharing my NMO story on social media. I started sharing my story online because I was getting tired of people asking what...Reactions0reactionsComments4 comments
Feeling Bad About My NMO DiagnosisThis video is about how I've been feeling recently and another side of how I cope with NMO. Life isn't always about being positive. It's okay to feel down about...Reactions0reactionsComments4 comments
How I Create: Through the Lens of a Visually Impaired ArtistI began painting in late 2017, shortly after experiencing a catastrophic episode of vision loss due to bilateral optic neuritis. Since then, my vision and physical capabilities have diminished quite...Reactions0reactionsComments1 comments
Is There a Link Between Alopecia and NMO?Neuromyelitis optica (NMO) is an autoimmune disease. This means it is caused by the immune system mistakenly attacking the body. It typically causes vision issues and weakness, pain, or spasms...Reactions0reactionsComments0 comments
Finding This NMO Community Was Like an Early Gift From Santa to My DaughterThere was a shift in my behavior in August 2021. From being sad, weepy, and depressed, I found this community of people with Neuromyelitis Optica and was glued to neuromyelitis-optica.net. First...Reactions0reactionsComments0 comments
Anemic NMOFor months I was experiencing an increase in my NMO symptoms. While I communicated this to my neurologist, I had no new lesions to back up a new acute treatment...Reactions0reactionsComments3 comments
1 Whole Year On Rituximab: ReflectingIt has been a whole year since I’ve been on rituximab as my NMO preventative treatment. I’m so grateful for the opportunity to have this treatment available to me for...Reactions0reactionsComments1 comments
The Voice Saying, "It’s Not Real"Being diagnosed with NMO, I’m sure we've all felt and heard from our peers that what was happening to us wasn’t real. For lack of a better phrase, everyone thinks...Reactions0reactionsComments2 comments
My Rare Disease Nonprofit - How I Started the Couch Pennies FoundationI watched the YouTube makeup artist Tallia through her entire journey from the minute she posted her first video to the very last. I watched her whole story unfold right...Reactions0reactionsComments1 comments
How my Suffering from NMO Impacted my DaughterI had just gotten out of the hospital. I informed my daughter that 2nd dose of the Corona vaccine had triggered the NMO. Now, my immune system, which was supposed...Reactions0reactionsComments5 comments
NMO Treatment and AnemiaNeuromyelitis optica (NMO) does not have a cure. But there are treatments aimed at preventing attacks or reducing relapses. Unfortunately, sometimes these medicines can have harmful side effects. One serious...Reactions0reactionsComments1 comments
Goodbye and Hello AgainAfter being diagnosed with NMO, change has been very scary to me. It took more of my vision with every attack. With each bit of vision loss, I started to...Reactions0reactionsComments3 comments
Bipolar 2, Exposure Therapy and NMOSomething never felt quite right when I was diagnosed with NMO at 19. This was before I was diagnosed with bipolar 2 disorder. Part of the NMO diagnosis process meant...Reactions0reactionsComments0 comments
A Few Weeks Before My Next InfusionWith all honesty, the day I was told I would receive the rituximab infusion every six months, I thought it would fix all my problems caused by NMOSD. My neurologist...Reactions0reactionsComments8 comments