Join the Conversation on
95 people
0 stories
12 posts
Explore Our Newsletters
What's New in
See full photo

How you doing?!

May is always Mental Health Awareness Month! How are you doing mental with all that is going on? What are your thoughts, emotions and feelings telling you?! Mental Health Check is really important for everyone including your strong friends and family that you may think or feel are good! You won't know unless you ask! Suicide and murder-suicide rates are rising drastically and we must continue to have the conversation about this subject. How am I feeling today mental?! I can admit I am feeling sadness. The sadness for me is accepting my new normal in life with my ♿. I'm grieving the person who could run, jump, climb trees and just play with my son at the park. I'm grieving the woman that didn't need assistance with going to the restroom or showering. It is a new way of living that I have to get used to. I know that this will take some time for me but I am making sure not to rush through these feelings and emotions. I am grateful for the life I've had before this and I am even more grateful for the life I have now. Accepting is just hard. I know God is always with me and my testimony is out there for others to know that despite your disabilities that you still matter, loved and can move mountains. To anyone going through a life changing experience, just know your purpose isn't over but it is just beginning! #MentalHealthAwareness #EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #MentalHealth #mentalhealthmatters #lifeonwheels #Wheelchairlife


I’m a expert at social distancing #CVID#MBL #alpha1

As a person home bound with no immune system I’ve become a pro at social distancing but I’m human and now more than ever we need to reach out. I may be wheelchair bound home mound but, it would be nice to get a check in some one who just wants to know I’m ok. We all have this who call to chat with the how are you but don’t really want to know they fill obligated to ask. Please everyone if your mentally or physically able reach out with a sincere heart even if it’s once a week with the only intention of asking your love one or friend how they are not to go one a hour chat about your problems and I guarantee when you least expect it you’ll get the same type call in return. I know many of us aren’t able handle long conversations I’m not but, to know one person cares and checks on you just because they care can change there whole day. So how are you today? Please drop a comment check in I care. I want everyone to be brutally honest we all sugar coat I’m the best someone asks I’m always fine but I’m not. So really how are you. If you need to vent let it go. I care how you are not the I’m doing ok I’m filling better but, think before you respond... How are you physically and mentally? I myself am having a hard day I had a infusion this am amd two more this week the three week treatments are tough. I over see my grandma with dementias care she’s right next door yet other than the camera system in place and videos and pictures I can’t lay my hands on her she’s my reasonfor getting up every day to make sure she’s took care of I miss her touch her rubbing my face holding my hand me rubbing her head. See it’s ok to not be ok sometimes. So how are you today? I’m sending all my fellow warriors big gentle hugsxxxx know your not alone and I care and want to know.... How are you honestly.. #Generalizedtorsiondystonia #POTS #hymomobilityeds #TraumaticBrainInjury #strokesurvior #CVID #Scoliosis #alpha1 #Fibromyalgia #InvisibleIllness #Wheelchairlife #Parkinsonisms #OrganFailure #survior #defetingdeppression #victornotavictim #childabusesurvivor

See full photo

Any advice or tricks for parenting in a wheelchair? My baby is 4 months old and I love being a mom, but #Momlife and #CRPS is hard.

#Parenting #CRPS #Wheelchairlife #ChronicPain

See full photo

Being a Mommy never stops

I homeschool my son due to the progression of #EhlersDanlosSyndrome and yesterday was the first of two homeschool events of the week and end of the year. We got a private tour of the SunTrust Park Stadium the home of the Atlanta Braves! It was so much fun and amazing tour that the kids and parents/learning coaches got to experience. I can admit I was nervous because of how long the tour was and being wheelchair accessible, yet I was greeted with helping and loving students and parents willing to help me. There are some really caring people in the world and I am grateful for that. My son and I was able to enjoy the tour and get a lot of baseball history. We decided that just because I'm in a wheelchair now doesn't mean life have to stop. I want my son to experience the life I never had and he gives me so much strength because he reminds me that I can do anything despite my disabilities. I know there are a lot of Moms out there that may feel like life is over when our bodies are against. We can some times feel like we are not great mothers because we can't do what we used to, yet don't see it that way. Your children will still see you as a hero and a fighter! I truly see that when I am with my son. He pushed me to keep going not just for him and his sibling but also for myself. He makes sure I don't allow myself to get down and out. I truly have a little angel on this Earth! Keep fighting!!

Ana 🦓💖💪🏾 #EhlersDanlosSyndrome #MightyMoms #LifeofanEDSerwomanofcolor #WheelchairUsers #HomeSchooling #Wheelchairlife #keepfighting


What UVA Basketball And Having SMA Have In Common

Wrote this article about a month ago for the first post on my website, myremarcs.com about my life with Spinal Muscular Atrophy and how I found similarities between it and the University Of Virginia Basketball team. Would love for you to check it and hear your thought!


#SMA #SpinalMuscularAtrophy #liveremarcably #myremarcs #uva #virginiacavaliers #Basketball #Disability #RareDisease #Wheelchairlife


Finally On #TheMighty

Hey everyone! So glad to finally be here on The Mighty, I’ve been reading the articles for a while now but for some reason never joined.

Just to give you a quick rundown on who I am, I’m a late 20 something guy who’s into movies, tv shows, sports, art, writing, and chillin with a cold whiskey and ginger. I was born with a disease called Spinal Muscular Atrophy and, because of that, have used a power wheelchair since I was two. I haven’t let it stop me or get me down, I went elementary, middle, and high school and graduated with an advanced diploma. Unfortunately I wasn’t able to go to college because of declining health but, instead, I watched and read and learned as much as I could/can on my own. Just in the last few months I’ve started a website called My RemARCs where I talk about my life with SMA and how God, my family and friends, and a sarcastic sense of humor have helped me to navigate this crazy, messy, beautiful thing we call life. I’d love to have you check it out! You can also find it on Instagram, Twitter, and Facebook at @myremarcs .

So now that you know a little bit about me, tell me what some things are that I should know about you, The Mighty, or who/what I should follow! Thanks!

#SMA #SpinalMuscularAtrophy #liveremarcably #TheMighty #RareDisease #Wheelchairlife #Disability #Faith


Rant from a wheelchair user

I’m not “wheelchair bound”. There are no ropes holding me down.

I do not “suffer” from illnesses. Yes it sucks, but my life is as good as any other’s and I’m simply managing, or even better: living with my illnesses.

Don’t call me “brave” or “a hero” just for being out and about. You manage with what you’re given. Time doesn’t stand still just because I’m ill. I too need to shop for groceries and get the mail.

Don’t offer me help every two seconds. I can manage fine on my own, thank you. If I need help - I’ll ask for it.

Don’t look down at me in my wheelchair and talk to me like a child. I’m an adult and can quite easily keep a conversation going (as well as punch you).

DO NOT stroke my cheek or touch me in any way if you don’t know me. I get it, you’re trying to make me feel better, but who goes up to a complete stranger and does that?!

Rant over
#Disability #ChronicIllness #SpinalCordInjury #FunctionalNeurologicalDisorder #MultipleSclerosis #Wheelchairlife


Man cdiff sucks ass!

Hello everyone I'm a T12 paraplegic, paralyzed from the waist down. Due to a gunshot about a decade ago when I thought my life was over. Everytime I hear the ambulance sirens my mind goes off on a PTSD roller coaster trip. At times when the roller coaster comes down the track brakes and the coaster gets out of hand. Then my mind down falls and gets off track. Ever since that gunshot I've hated my life at times. Always getting chronic infections needing antibiotics. The vicious cycle of antibiotics getting cdiff from so many antibiotics then back around again. Having to change my adult brief having more than 10 bowel movements in a day. The life in these hotwheels all I can do is keep on pushing and holding on strong. Keep my hope and faith at pace that it's supposed to be at.
#Disabled #wheelchairbound #Wheelchairlife #chronicallyill #Cdiff #faithandhope #Incontinence #paraplegic