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
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
My Art TheoryPrior to being diagnosed with NMO, I didn’t have many artistic hobbies. Meaning when I tried to do anything in art class - like paint, draw, pottery, or anything else...Reactions0reactionsComments2 comments
The Dream: Couch Pennies, My NMO NonprofitAt the age of 13, I was a young and healthy teenager. At the time, YouTube was still very new. Like many kids my age did at that time, we...Reactions0reactionsComments1 comments
The Black Rare Disease ExperienceI read an article the other day, and it told a detailed story about being Black and having a rare disease. That’s something you can’t find a lot of information...Reactions0reactionsComments2 comments
The Rare Disease effectHaving a rare disease is not something that everyone can understand. Oftentimes, the majority of people who don't understand how life changes after having a rare diagnosis diagnosis, back away...Reactions0reactionsComments10 repliesMental HealthFriends & FamilyRelationships & Friendships
You Must Understand, Pain is Pain!I wish I could describe the chronic pain from my NMO that I feel every day. I also wish I could explain the pain that the community feels on a...Reactions0reactionsComments0 comments
FeaturedThe Eyeball Headache Hi NMOSD fam!! Let’s talk about the eyeball headache! That intense pain in the back of your eye that’s so deep and painful. The kind of pain that no amount...Reactions0reactionsComments10 repliesPain
My Steroid StoryLet’s talk steroids and NMO. When I was diagnosed in 2017, I was at a hospital with doctors that didn’t know much about NMO, let alone MOG. When I originally...Reactions0reactionsComments6 comments
What helps on bad days?I know I struggle with boredom when I don’t feel well. What are some things you do to help boredom?...Reactions0reactionsComments6 repliesCoping
I'm Grateful for NMO, The Disease That Tried to Kill MeI’m grateful for my NMO diagnosis. Reading that, you may say, "huh? Why?" Before I was sick, I thought I had my life planned out. I was going to graduate...Reactions0reactionsComments5 comments
FeaturedWere you given resources?Upon receiving your diagnosis did anyone give you resources on your diagnosis and what to expect?...Reactions0reactionsComments10 repliesDiagnosisUndiagnosed & Seeking DiagnosisNewly Diagnosed
Surgery Number ThreeOn January 12, 2022, I walked into the surgery floor to start the trial process of getting a stimulator placed for my bowel and bladder. I have shared my struggles...Reactions0reactionsComments2 comments
Self LoveIt’s no secret that NMO can change how your body is. It can definitely mess with mental health. It’s important to have self love even through living with a hateful...Reactions0reactionsComments8 repliesCoping
Disclosing Your DiseaseAs rare disease patients, we have to become comfortable with explaining NMOSD. A lot of times, we are the ones telling the doctors about the disease. We constantly need to...Reactions0reactionsComments0 comments
Losing my YouthGrowing up an athlete, I was always the active one of the bunch. Always wanting to go, go, go, and still having energy. Now, I am the friend that has...Reactions0reactionsComments4 comments
What helps spasms for you?I wanted to know if anybody has spasms and what you do for them? Personally I have been having them very badly and I only take to Tizanadine. What helps...Reactions0reactionsComments19 repliesPain
Giving up?What’s one time you wanted to give up on your self dealing with NMOSD? How did you get through? For me it was after I got my 4th rare disease...Reactions0reactionsComments2 repliesCoping
Working with PainHi friends! I’ve been having a hard time with working a regular job due to the pain I get. Does anyone else deal with thiS?...Reactions0reactionsComments7 repliesPain
What's in Avery's Bag?You never know what you might need to have on you to make life with NMO all the easier. Let's take a trip into Avery's bag and see what she...Reactions0reactionsComments0 comments
