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being chronically ill is a full time job.

I have been chronically ill my entire life. I don’t remember a time when I wasn’t battling some kind of infection. I was born with a rare disease known as primary immunodeficiency or PI for short. More specifically CVID or common variable immune deficiency which usually affects children. I wasn’t diagnose until the age of 28! I receive monthly plasma infusions of Gammagard through a chest port. It helps to maintain my IgG levels since I cannot produce my own antibodies. Basically it just means I’m prone to infections like pneumonia. #piawareness #Showyourstripes #zebrastrong #DonatePlasma #RareDisease #RareDiseaseMonth #InvisibleIllness

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“Navigating a flawed Healthcare System & an ableist society”

I’m sick of trying to navigate a Healthcare system that doesn’t give a shit about me. ⚛️ ##Ableism #ChronicIllness #Disability #disabilityawareness #DisabilityInclusion #DisabilityRights #Spoonie #spooniesupport #spoonielife #zebrastrong

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Zebra Strong!

Common variable immune deficiency patient going on 8yrs. now. I wasn’t diagnosed until the age of 28 due to my own insistence after battling a lifetime of illness & infections. We are #zebrastrong ! I’m so happy to support #RareDiseaseDay ! @IDFCommunity #piawareness #CommonVariableImmuneDeficiency

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#MiniHarvest is still a harvest

I had something better typed up and then my phone wigged out. I just wanted to share what my plants surprised me with today. I hit 2 cups! of raspberries, a handful of basil and dill. Tomorrow will possibly be a cucumber, zuchinni, some strawberries, and surely more raspberries. I'll be putting my new dehydrator to use soon by testing it with the raspberries and later to be used on wild blackberries still developing on my hillside. Last year, I havested gallon sized zippy bags of berries that I kept in my freezer and lost them in the ice storm from lack of power. I decided to try a more secure method of saving them by drying them out.

This just puts to mind that baby steps matter and to be easy on yourself. #MiniHarvest is still a harvest and every mistake is the dance of progress.

#PlantMomForLife #EDS #zebrastrong #fobromyalgia #GardenForMentalClarity

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The first game since getting sick. #zebrastrong #EhlersDanlosSyndrome

Today was the first soccer game I have played in a year and a half (very social distanced with masks;) I was just so happy. I played sooo much more than I thought I could. My ankles were rolling my knees were popping and my lungs were pushing, but I didn't care. Post game I have my post-excersize cough, and my entire body hurts. I can't crawl or walk, I now put all my wieght on my arms through crutches. I can't imagine two years ago playing three games in a day. I came home unable to walk and decided to take a bath, I fell asleep on the bath and woke up choking on water, I woke up and tried to just enjoy the warm water and not fall asleep, but I once again woke up choking. Now I can't sleep because I can't breathe. Worried I might be developing pneumonia. All from a soccer game. It's hard to feel like myself these days. #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome

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Black Disabled Lives Matter

I can't just say Black Lives Matter without thinking about Black Disable Lives Matter. As you know I live with Ehlers Danlos Syndrome on a daily basis. Anytime you hear about EDS or Google EDS, all you see is white people speaking about how this invisible disease affect their lives. Well first let me say that EDS affects ALL RACES! Yet there is no representation of it. I wish I had an answer for why this is the case but I can see there is change happening in the EDS community. I would love to see change for the disabled black and brown period. Did you know that I am NOT given the absolutely best quality of treatment like someone that is caucasian?! Did you know that I've had been told by doctors that they have never seen EDS in a black person so I must have been misdiagnosed? Yes I have heard those words! I've been told it is all in my head and have been dismissed countless times. I've seen black children that have disabilities be treated so differently than white children. From insurance companies to actually nurses and doctors just refuse to give a black person like myself the best medicine, best quality of care and even the bedside manner has been sexist and racist. We can't say Black Lives Matter without saying that Black Disable Lives Matters, Black LGBTQ community Matters! How many kids have to die to get the message? How many people like me have to looked over and misdiagnosed because the color of our skin? We deserve the best treatment like anyone else! The art above is from a beautiful Queen name Jen White Johnson who is an Afro-Puetorrican mother to an autistic son. I fell in love with her art as well as her fight for her son! Thank you for inspiring me to write about this Jen White Johnson! You matter and your beautiful son matter! Keep fighting!

Ana ❤🦓💪🏾

#blacklivesmatter #blackdisabledlivesmatter #MentalHealth #EhlersDanlosSyndrome #Autism #LifeofanEDSerwomanofcolor #zebrastrong

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In my thoughts

Today a lot of emotions hit me. On Monday I celebrated my 39th birthday, and it was amazing! I really had a great day. Today is a different story emotionally. I miss my best friend a lot. She has been on my mind so much these past few days. I know that if she was still here, we would be partying it up! Life feels so weird without her. The grieving process I feel never stops. Also today more emotions surface about my new life being in a wheelchair. I've been accepting more and more each day that this is my new normal, yet I miss my old life of walking and running around with my children and grandson. I miss being able to jump and go hiking. I miss being able to dance and not worry about if I'm going to fall or dislocate. This self isolation that we have going on has a lot of emotions and feelings surface. Some things I knew I was suppressing but also emotions and feelings that I thought I let go, yet I haven't fully cut the cord. Accepting and adjusting to being is my wheelchair is a daily lesson for me. As a Taurus, we don't like change to much. I realize that changes happen and it is OK to have anxiety about it. If I didn't I wouldn't be human. I do understand that changes are good even when you may not see it at the moment. I am learning to love this new person. I am learning to have a connection with my wheelchair and appreciate that it is helping my quality of life. It is apart of me and my new normal so I must be patient with myself when it comes to accepting. I wouldn't trade my life for the world though. I know that there is work to do when it comes to my feelings and overcoming my fears and anxiety but I am willing to do the work. It isn't easy and I know more will surface and the lessons comes with healing. So right now I need to release and let go. No matter how hard it maybe, I know that everything happens for a reason. Keep fighting!

Ana 🦓♿💪

#EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #feelings #Awareness #EDSAwareness #MentalHealth #Anxiety #Depression #Happybirthday #lifeonwheels #keepfighting #zebrastrong

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