LifeofanEDSerwomanofcolor

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    I messed up badly

    I'm having major issues with EDS and my entire GI system! With esophageal spasms to vomiting and diarrhea. I've lost 30+ lbs in 3 weeks. So with all of that, I haven't been able to take my meds like I should. Especially my meds for bipolar disorder/depression and GAD. It has taken a toll on some of my relationships. One in particular I know for sure I totally fucked up and I feel horrible about it. When your body is physically broken, so is your brain. My brain has been broken for some time and I was getting better until this situation with my GI system. I feel like I'm in such a dark place right now. I mean hell, all of us maybe feeling the same. 2020 has been one giant rollercoaster full of crazy twists and turns. Yet I'm struggling really bad right now. Struggling with not listening to the crazy thoughts in my head. I'm struggling with not getting the nutrients I need to stay health and alive. I have an esophagus that's closing by the day and a stomach that hates me with a passion. What I have been trying to avoid, I can't anymore and that's a feeding tube. I know it could help the quality of my life yet the fear of something going wrong scares me a lot. What do you do when you don't know what to do?! Who knows 🤷🏾‍♀️... just keep breathing I guess! Keep fighting...

    Ana ♿🦓🙏🏾💪🏾

    #EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #BipolarDepression #WheelchairUser #Depression #FeedingTubes #Anxiety #keepfighting

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    Pills That Can Be Hard To Swallow

    I just finished a Teleheath Zoom appointment with my psychiatrist not too long ago, and there was a lot of hard pills to swallow. Learning how to accept change has been the biggest pill to swallow. Accepting the change in my physical body as well as my emotions behind it all. I have learned that I need to be more selfish with myself. I've been waiting to please others again and that isn't helping me whatsoever. I've been wanting others to accept me yet I have forgotten to accept myself. Again biggest pill to swallow. Admitting that I am not ok, I can admit is getting better. I may not vocalize it to others as much but I am making sure to vocalize to myself. Really say it out loud so I can really take in what I am saying and let it sink in. Asking for help is the next to biggest pill to swallow. I've gotten so accustomed to doing things and fixing everyone else's mistakes that I feel as though I can handle everything on my own. I have to ask for help and be ok with asking. I have to get out of my feelings about asking for help when I need it. There are some people in my life that truly want to help and I have to let them in to do so. As I learn more about myself during this pandemic and being quarantine, I am realizing that this is nature to feel the way I do. Even though the pills are hard to swallow, they are what is helping me to be a better person for myself first and then for others. Keep fighting!

    Ana 💪🏾🦓❤♿

    #EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #EmotionalHealth #MentalHealth #BipolarDepression ##Blackdisabledlifematters #blacklivesmatter #GeneralizedAnxietyDisorder #keepfighting #lifeonwheels #WheelchairUser

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    Check on your strong friends

    I have been studying more and more about functioning depression and I realize that I am definitely in that category. I've been a functioning depressed person for some time. I know what triggered it was the death of my childhood best friend. I have learned how to go through life and be kinda numb through it. I chose to be hilariously funny and always dropping gems (inspirational) to hide what I am truly feeling. The more I speak about her and our relationship, the more I'm proud of us. Yet I'm heavy hearted and sad because she is no longer on this realm of reality to tell her what she meant to me. I became even more depressed after my grandmother passing and then being sick with Covid-19. I still have survivor's remorse even though I know I shouldn't. It is something I can not seem to shake. I say all of this to say.... check up on your friends who you feel are stronger than you to handle this situation right now. Be a service to those who are always a service to you. I know I laugh through my pain in order to stay sane. I am working through it all with the help of my psychiatrist and my closest friends. So do me a favor... check on everyone! Keep fighting!!

    Ana ❤🦓💪🏾♿

    #LifeofanEDSerwomanofcolor #EhlersDanlosSyndrome #MentalHealth #StayStrong #Depression #BipolarDepression

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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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    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

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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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    Feelings, Emotions and Quarantine

    The coronavirus has been very difficult for me emotionally and mentally. With having my own diagnosis of Covid-19, it was very scary. I am grateful I wasn't in the hospital but it was close. Yet so much has happened in between that time that I feel very much in my feelings. I've lost two people close to me but not of the virus thank God. I lost due to a terrible car accident. I lost a family member due to baffling murder. I wasn't able to be with my family and it hurt. What hurt even more is I was the last to find out about my family member's passing due to family drama. You would think with all that is going on with the world that your family would be closer. That is not the case for my mother's side of the family. If anything they have pushed themselves further away. I have learned that I can not worry about my family anymore because they damn sure aren't worried about me. This situation really have to look deep within and heal what needs to be. As much as I would like to rekindle the relationships with certain family members, I've come to terms that it will never happen. I am becoming ok with it even though it hurts so much. I live in Georgia and our Governor has decided to open up some businesses today and we all know it is just too soon to open up barbershops and Salons. I don't feel safe in my state as well as the country. With a President who is egotistical, narcissistic and racist doesn't help my fears. To know that I could catch the virus again is also what consumes my thoughts. No one is safe these days and it is scary to know that what was our normal will never be that again. So what do you do when you are struggling like this?! I don't know other than to talk about it. Keep fighting! #EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #MentalHealth #MightyMoms #Depression #Anxiety #EmotionalHealth

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    🚨 Warning

    Crying is suppose to help release right?! Why don't crying help with pain?! Maybe it does but I can't tell. I survived the Covid-19 which triggered another EDS flare/crisis. This particular one is extremely painful. I'm so emotional and I just want to not feel anything related to pain. We EDSers go through so much with this very complicated disease. We could fine one day and then broken crayons the next day. Broken crayons is the best way to describe how I feel. It may sounds weird but it is my life right now. Everyone feels things differently when it comes to EDS and it is hard to some times compare with other EDSers. What I may feel, the next person may not feel at all. EDS can cause you to feel so alone as well as wanting to be wrapped in bubble wrap to keep from dislocating, sublaxed and from falling on the ground! Crying some times just makes it worse. Today my tears pain my face. It feels like hot lava rolling down a broken and cracked face that won't stop. I don't know what to do but just stay in bed and find a way to distract me from the pain. Writing is a way that helps me so I can truly express myself. What do you do to distract you from the pain?! Keep fighting!!! #EhlersDanlosSyndrome #FlareUps #LifeofanEDSerwomanofcolor #EDSAwareness #WheelchairUsers #ChronicPain #MentalHealth #Dystonia #keepfighting

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    Surviving Covid-19

    I am battling right now. I don't know what and how to feel. I haven't really shared my experience here but I did test positive for Covid-19 back in March. My son and I woke up with a fever. We went to the Urgent Care. We was told not to get out of the car. Our temperatures were checked, and then the nurse asked for my contact info so the nurse inside can call me to verify information and insurance. A Nurse Practitioner came to the car, checked our vitals and told us that we should self isolate immediately. She gave my son an exuse for school. He is homeschooled but it is a Cyber Academy and they still follow the state laws when it comes to excused and unexcused absences. We got home and did just that. I was also told to give him and myself Tylenol for the fever and cough syrup for the cough I had. My son did not have a cough. Two days later my husband had to take me to the hospital because I was having asthma attacks back to back. Once there in the ER, my family couldn't be there with me so they had to wait in the car. By that time my son wasn't having fevers anymore. I was having all the symptoms from chills, fevers, vomiting and I was having uncontrollable diarrhea along with the asthma attacks. I was tested for cold and strep throat first and then given a breathing treatment. Even though the state was limited and could only test if you are admitted, this nurse I had put her job on the line after reading my history and tested me for Covid-19. She told me the test would take a 5 to 7 business days to come back and wait for the Health Department to call me. I got the call about 4 days later that it was positive. So I made sure to isolate which was hard as a homeschool mom but we made it work. I am feeling a lot better physically except for losing my sense of smell. It is still lost and I don't like it at all. 😭 Watching the news and being on social media sites like Instagram and Facebook was only triggering my mental health. I still feel like I am rapidly cycling a lot with my thoughts. I feel so much sadness because so many people have lost their lives to this deadly virus and yet I survived!! I am grateful to have survived don't get me wrong but I have like a survivor's remorse in a way. I know this could have taken me out for sure. It just have me so in my head and confused. So I am here just writing and spilling my soul even if it doesn't makes sense. Does anything makes sense anymore!? I don't know but I know I had to get this out.... keep fighting! #COVID19 #EhlersDanlosSyndrome #MentalHealth #EmotionalHealth #LifeofanEDSerwomanofcolor #lifeonwheels #BipolarDepression #EDSAwareness #BipolarDisorder #PanicAttack #InvisibleDisability

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    Got My New Wheels

    I ordered my new custom wheelchair from 1800-Wheelchair last month! I recieved it on Tuesday morning!!! This would not have been possible without the donations from GoFundMe! I am getting my confidence back and it feels good! Keep fighting!

    Ana 🦓💪🏾♿🙏🏾💚 #LifeofanEDSerwomanofcolor #EDSAwareness #WheelchairUser #EhlersDanlosSyndrome #Dystonia #lifeonwheels#quickiewheelchairs #sunrisemedical

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