NMOSD Helped Me Come OutBeing diagnosed with a rare disease, NMOSD, helped me come out. It’s June so that means it’s pride month, and during pride month we take the time to celebrate those...Reactions0reactionsComments0 comments
Working Out with NMOSDOver the last two years, I’ve started to go to the gym again, and weight lift under the supervision of my doctors. When I was diagnosed with neuromyelitis optica spectrum...Reactions0reactionsComments0 comments
Feeling Stuck Since My DiagnosisI feel stuck since my neuromyelitis optica (NMO) diagnosis. My life has been nothing but a whirlwind of constant change, lack of room for routine and feeling sedentary. After I...Reactions0reactionsComments0 comments
Mental Health Hi Fam! What are some struggles you have with your mental health and how do you cope? Personally I’ve been struggling with depression, and something that helps me get out...Reactions0reactionsComments1 repliesMental HealthCoping
I Miss the Joy of RunningBefore neuromyelitis optica spectrum disorder (NMOSD), my whole life I was an athlete. When I got to high school, I decided I was going to play basketball since the basketball...Reactions0reactionsComments1 comments
I Feel Alone with a Rare DiseaseLiving with a rare disease like neuromyelitis optica (NMO) has put me in a position to feel alone. When I was first diagnosed with a rare disease, I never knew...Reactions0reactionsComments0 comments
Record Your JourneyI record everything. Since the day I was diagnosed with neuromyelitis optica (NMO), I have always felt the need to record and take pictures of my journey. From the symptoms...Reactions0reactionsComments0 comments
Meeting My Service PupThe first year of my diagnosis was rough. I’ve never felt so alone, so unwanted and so broken in my life. The friends that I had were slowly burning out...Reactions0reactionsComments0 comments
Stop Telling Me “You’re So Strong”You’re so strong. I don’t know how you do it. You’re so young to be dealing with this. You’re too young to be doing this. With a rare disease diagnosis...Reactions0reactionsComments0 comments
Chronic FatigueThe joys of chronic fatigue, the battle that even caffeine can’t win. When I was first diagnosed I would sleep 16 to 20 hours a day, I would fall asleep...Reactions0reactionsComments2 comments
Working A Real Job After DiagnosisFor most of my rare disease journey I was a sick and unemployed college dropout with minimal work history. The first three years of my diagnosis I applied for disability...Reactions0reactionsComments1 comments
My Anxiety With NMOSometimes, it’s like my brain is in a revolving door. The thoughts spin fast, sometimes slow or not at all. My brain’s exhaustion is from my thoughts constantly dancing pirouettes...Reactions0reactionsComments0 comments
What Does Self-Advocacy Mean?You constantly hear the phrase that you need to advocate for yourself with doctors and in appointments you hear how you need to stand up for yourself. And, if you...Reactions0reactionsComments0 comments
Going Out With FriendsAt just 19, I was diagnosed with NMO, which as I’m sure many of us know are the prime party years. These are the years where you go to college...Reactions0reactionsComments0 comments
Public Speaking Gave Me PurposePublic speaking is one of the most feared things in the human race. We are so fearful of the judgment of other people that speaking to large groups of people...Reactions0reactionsComments0 comments
Social Media Gave Me a VoiceBeing diagnosed at 19, I didn’t have much of a voice. Let’s be honest–I was still coming into adulthood, figuring out who I was, and my place in this world...Reactions0reactionsComments0 comments
MourningI scroll through this website every day, seeing pain in different types and forms. People will talk about life before their NMO took over. Something that we don't talk enough...Reactions0reactionsComments2 comments
The Beauty of Stretch MarksFor my whole life, I have been an athlete. I have always been active and tried my best to stay in shape. I also never really paid attention to a...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
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