Patients Nervous system diseases
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Hey @bonkistobias♡! I hope you are having a good day!
It is very nice to meet you! My name is Polina I am one of the community managers on the platform! I am sorry to hear about the challenges you have had with narcolepsy. I will try to tag some members who might want to share their thoughts on this condition and how they deal with it. It is great to hear about your interests! What is your favorite pokemon? :)
P.S You can rate your medications and read others comments on Carenity! @Racquel25 @Stephenielennox @DeeKing @lnewell1gmail.com @ttnnkkrr @Monimac51 @Dwbrentsmom
Hey everyone! How are you?
Let's introduce ourselves and talk here! How has your journey with narcolepsy been lately? What can you advise someone recently diagnosed?
Polina from the Carenity team
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Hello! My name is Bonk/Tobias and I am new to this platform!
Let me introduce myself. I am 17 years old and I use they/he (transmasc nonbinary butch lesbian here). I am a junior in high school. I want to become an epidemiologist! I also am pagan and practice witchcraft. I love being in band, choir, and theatre. I am even one of the alto section leaders in my choir and I pride myself on that fact. I am also my school's GSA president
The condition I came here to seek support with is narcolepsy (specifically type two). I have started having symptoms shortly after getting COVID-19 my freshman year, and it exponentially worsened after marching band season my sophomore year. Initially, I thought it was chronic fatigue since that was being reported as an aftermath condition with COVID. However, I soon started having sleep attacks and I was seriously struggling. My PCP was the one who initially mentioned narcolepsy, and my junior year we started the process. After testing, it was pretty clear I was narcoleptic. It's hard for me to admit I am disabled, but I want to use the confusion and anxiety I have around my diagnosis to bring awareness to others.
I got my diagnosis of type two narcolepsy less than a month ago, and I still have a lot to learn. I started 100g modafinil three days ago and I have found I can already feel a lot better. I'm excited to meet others whom interests we have in common here!
Talking about interests, here are some of mine: witchcraft/paganism, pokemon, gaming, music, any kind of arts, LGBTQ+, women's, disability, and other rights activism, chucky/child's play, alternative fashion, etc
I am thrilled to talk to you all! ♡
- Bonk (they/he)