Hi! I’m Moe (@ehlersdanlosgrl on Twitter and Instagram) and I’m 21 years old. I do not currently work but have previously been a wig stylist for a start up local theatre company for 2 seasons.
I have been diagnosed with Ehlers Danlos Syndrome, POTS, small fiber neuropathy, and facet arthropathy of the spine. My primary or “parent” diagnosis as I like to call it is definitely EDS.
I have memories from 6 years old having muscle spasms in my legs and back during physical activity, screaming on the floor of a Walmart at age 10 from “growing pains”, and turning into a bright red cherry faced swollen person for HOURS after running in Physical Education all through grade school.
I was officially diagnosed with EDS at age 17 after 3 1/2 years of “official” searching for answers. There are 13 types of EDS ranging from Classic to Periodontal. I am specifically diagnosed with hEDS.
My diagnosis journey was slightly traumatic. I was forced to see therapists by order of doctors several times because no one believed I was in pain. I was in and out of the hospital all through high school constantly being told “the tests came back normal, we don’t know what’s wrong.” It wasn’t until we went to a specialist geneticist that we finally found answers.
Because of my symptoms, I am unable to work or attend school. I tried doing 3 (three) classes one semester of community college a year after I graduated high school and only “passed” 1 (one) class... I have volunteered frequently when able, but actual work has not been a possibility for me yet. I am hopeful that my POTS symptoms, which keep me in bed many hours of the day, will eventually be lessened by either medication or a change in my body.
I have been diagnosed with Ehlers Danlos Syndrome, POTS, small fiber neuropathy, and facet arthropathy of the spine. My primary or “parent” diagnosis as I like to call it is definitely EDS.
I have memories from 6 years old having muscle spasms in my legs and back during physical activity, screaming on the floor of a Walmart at age 10 from “growing pains”, and turning into a bright red cherry faced swollen person for HOURS after running in Physical Education all through grade school.
I was officially diagnosed with EDS at age 17 after 3 1/2 years of “official” searching for answers. There are 13 types of EDS ranging from Classic to Periodontal. I am specifically diagnosed with hEDS.
My diagnosis journey was slightly traumatic. I was forced to see therapists by order of doctors several times because no one believed I was in pain. I was in and out of the hospital all through high school constantly being told “the tests came back normal, we don’t know what’s wrong.” It wasn’t until we went to a specialist geneticist that we finally found answers.
Because of my symptoms, I am unable to work or attend school. I tried doing 3 (three) classes one semester of community college a year after I graduated high school and only “passed” 1 (one) class... I have volunteered frequently when able, but actual work has not been a possibility for me yet. I am hopeful that my POTS symptoms, which keep me in bed many hours of the day, will eventually be lessened by either medication or a change in my body.
As far as relationships go, up until my current boyfriend, my illness was always a problem in some shape or form with past flames. My boyfriend now is so accepting of it and even offered to be my caretaker over summer when my health was really poor. He has never made me feel less than because of it. Friendships on the other hand are RIDICULOUSLY hard. I find them nearly impossible to maintain!!! Let alone finding someone to befriend who is okay with all the baggage I’m hauling. I do however have an incredible support group of young women with EDS through Twitter. My Squad are my best friends and my family! (Which I never would’ve had without my EDS)
My loved ones here (off line) care about my illness’ effects on me I think, but probably not as much as I’d like them to... they can never truly understand the burden I bare, and I have to be okay with that, because if I’m not, I lose those relationships in the bitterness. They just can’t see the mental toll. I think that’s where I struggle most with them.
When I’m not online or in bed, I’m a cosplayer! It’s funny to me because I started cosplaying AFTER I got sick, so I really only know how to cosplay WHILE SICK. My biggest set back is mental though I think. I compare myself to others and become scared to use my mobility aids in costume because of internalized ableism I’m constantly battling. I have met some fantastic disabled cosplayer’s through Instagram who really have changed my mindset though! My confidence is definitely growing in being a disabled cosplayer.
...I created a cosplay specific page [on Instagram] that I run just for fun and it’s been great interacting with other cosplayer’s even if I’m stuck in bed! I could say the same about my chronic illness Twitter/instagram! I love meeting new friends and getting social interaction since I get so little of it offline.
My loved ones here (off line) care about my illness’ effects on me I think, but probably not as much as I’d like them to... they can never truly understand the burden I bare, and I have to be okay with that, because if I’m not, I lose those relationships in the bitterness. They just can’t see the mental toll. I think that’s where I struggle most with them.
When I’m not online or in bed, I’m a cosplayer! It’s funny to me because I started cosplaying AFTER I got sick, so I really only know how to cosplay WHILE SICK. My biggest set back is mental though I think. I compare myself to others and become scared to use my mobility aids in costume because of internalized ableism I’m constantly battling. I have met some fantastic disabled cosplayer’s through Instagram who really have changed my mindset though! My confidence is definitely growing in being a disabled cosplayer.
...I created a cosplay specific page [on Instagram] that I run just for fun and it’s been great interacting with other cosplayer’s even if I’m stuck in bed! I could say the same about my chronic illness Twitter/instagram! I love meeting new friends and getting social interaction since I get so little of it offline.
Hope for a cure... that one is a hard nope. EDS is genetic. Relief? Maybe. Unfortunately there’s not much research going on for hEDS (let alone other forms of EDS!) right now. So, I don’t have hope for much of anything, which is why I’m just trying to make the best of what I’ve got going on now. I am getting worse. My files say “degenerative”. Forever sounds pretty accurate to me.
Currently I am doing saline therapy for my POTS. It is helping so much so that I have not fully fainted in 2 (two) months. I also am on a medication prescribed by my Dysautonomia specialist that’s been really helping my heart rate. As far as my EDS goes, my “treatments” are a joke. Pain meds are the only thing keeping me out of the hospital right now.
In the future, I am possibly getting non-steroidal injections in my spine for my facet arthropathy. I need a new MRI first as they didn’t scan the right section (they had ONE JOB y’all!!) but I am honestly praying for even minor relief as my back is currently my most disabling issue.
To maintain hope, I turn to F3: Family, Friends & Faith. Those 3 (three) things continue to keep me from exploding. Christian music and scripture is super helpful to me. I have a Romans 8:18 tattoo (it basically says that the suffering you are going through now is nothing compared to the glory that lies ahead) and I repeat the verse to myself many times a day as a sort of grounding exercise. My family & friends are super important to me. I couldn’t get through a single day without their support! I also really appreciate my boyfriend. He constantly gives me things to look forward to by planning little dates and things for us to do. It keeps me looking forward instead of dwelling on the current misery.
I am not currently apart of any projects for the chronically ill community unless you count running a support group on Twitter! I highly encourage y’all however to look into @chr0nicallycute (on Twitter) and her card project! She sends home made cards to chronically ill folks for free!
Currently I am doing saline therapy for my POTS. It is helping so much so that I have not fully fainted in 2 (two) months. I also am on a medication prescribed by my Dysautonomia specialist that’s been really helping my heart rate. As far as my EDS goes, my “treatments” are a joke. Pain meds are the only thing keeping me out of the hospital right now.
In the future, I am possibly getting non-steroidal injections in my spine for my facet arthropathy. I need a new MRI first as they didn’t scan the right section (they had ONE JOB y’all!!) but I am honestly praying for even minor relief as my back is currently my most disabling issue.
To maintain hope, I turn to F3: Family, Friends & Faith. Those 3 (three) things continue to keep me from exploding. Christian music and scripture is super helpful to me. I have a Romans 8:18 tattoo (it basically says that the suffering you are going through now is nothing compared to the glory that lies ahead) and I repeat the verse to myself many times a day as a sort of grounding exercise. My family & friends are super important to me. I couldn’t get through a single day without their support! I also really appreciate my boyfriend. He constantly gives me things to look forward to by planning little dates and things for us to do. It keeps me looking forward instead of dwelling on the current misery.
I am not currently apart of any projects for the chronically ill community unless you count running a support group on Twitter! I highly encourage y’all however to look into @chr0nicallycute (on Twitter) and her card project! She sends home made cards to chronically ill folks for free!
