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    What do I do? TW: sh and scd

    I have really bad anxiety as well as depression, PTSD, multiple chronic health conditions, an emotionally abusive mother, etc. that have been giving me self harm and suicidal urges for the first time in almost exactly two years (I haven’t done anything to hurt myself since Oct 30, 2019). I know I need help but what do I need? I see a therapist and am on meds. What do I do? #Depression #Anxiety #PTSD #Suicide #Selfharm

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    #STOPSICKLECELLABUSE

    www.stopsicklecellabuse.com is now up. Please stop by and learn about Sickle Cell Abuse and how our medical system and providers are participating in the on-going abuse and mistreatment of Adult Sickle Cell Patients...either directly or passively and what you can do to stop it. Our mission is put the SCD Patient in their rightful seat as the "EXPERT" of their health and Healthcare needs. While replacing the Culture of Cruelty that dominates SCD care with, Healing with Accountability. Instead, of labeling patients as "Addicts ", refusing them care based on the providers "comfort " and calling security when that one SCD patient has been neglected, ignored and disrespected one too many times. While writhing in pain and ultimately suffocating from the inside out. Let's remember our humanity and the fact that a patient doesn't age out of it nor, being respected and cared for, once they age out of Pediatric Units. Then, let's start listening and believing each other again. I don't know when it became the unspoken rule that medical providers shouldn't believe anything Sickle Cell Patients say. However, I know we've lost waaaaay too many people due that mentality which leads to Substandard, neglectful care. How many of us have to die before you all stop the nonsense and start healing?

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    World Sickle Cell Day & Juneteenth 2021 What Do They Mean to Sickle Cell Warriors? part3 #stopsicklecellabuse

    Yet these people are allowed to make judgments on our person, and justify their bias actions, through the declaration of THEIR PERSONAL DISCOMFORT, when it comes to "Properly Medicating” us, their "Patients". Those with decades of medical records in addition to, documented evidence-based, pain management treatments. Which surely support the fact, that by treating the patient, they are NOT "enabling" a "possible" "drug addict".
    Unfortunately, just as we allow our officers to disproportionately gun down citizens of color in the streets, on a daily basis. We also allow, our so-called "healers", to openly mistreat SCD Patients based upon their "feelings”, that they are not being presented with a “patient” in need of their services but, an "addict" just trying to "hustle" their resources. With both groups being given the protection and backing of the United States, due to their needs to make “split second, life or death decisions”, should they make the wrong call.
    So, on what is our very first national Juneteenth holiday and World Sickle Cell Day. I ask you all to look at the many ways our country’s history continues to affect our everyday lives, through legacy laws and racial bias. As we, pledge to one another, to be a daily reminder that times are different, and certain behaviors will no longer be tolerated. Regardless, of one’s badge or white coat and stethoscope.
    #stopsicklecellabuse
    #worldsicklecellday2021

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    World Sickle Cell Day & Juneteenth 2021 What Do They Mean to Sickle Cell Warriors?part 3 #stopsicklecellabuse

    Just as our officers find ways to peacefully disarm and deescalate white perpetrators daily, without firing one bullet. However, in the same breath claim, that killing the black or brown perpetrator, was the "only choice". Sickle Cell patients are denied treatment everyday, based on the doctor and/or nurses’ "belief", that we are "Addicts" who are "Drug Seeking", for a cheap high. Rather than, just accepting the "FACT" that we are "Legitimate Patients”, suffering from a "Hereditary Illness " that is KNOWN....actually SCIENTIFICALLY PROVEN to cause pain like no other, not even that of child birth. Yet these people are allowed to make judgments on our person, and justify their bias actions, through the declaration of THEIR PERSONAL DISCOMFORT, when it comes to "Properly Medicating” us, their "Patients". Those with decades of medical records in addition to, documented evidence-based, pain management treatments. Which surely support the fact, that by treating the patient, they are NOT "enabling" a "possible" "drug addict".
    Unfortunately, just as we allow our officers to disproportionately gun down citizens of color in the streets, on a daily basis. We also allow, our so-called "healers", to openly mistreat SCD Patients based upon their "feelings”, that they are not being presented with a “patient” in need of their services but, an "addict" just trying to "hustle" their resources. With both groups being given the protection and backing of the United States, due to their needs to make “split second, life or death decisions”, should they make the wrong call.
    So, on what is our very first national Juneteenth holiday and World Sickle Cell Day. I ask you all to look at the many ways our country’s history continues to affect our everyday lives, through legacy laws and racial bias. As we, pledge to one another, to be a daily reminder that times are different, and certain behaviors will no longer be tolerated. Regardless, of one’s badge or white coat and stethoscope.
    #stopsicklecellabuse
    #worldsicklecellday2021

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    World Sickle Cell Day & Juneteenth 2021 What Do They Mean to Sickle Cell Warriors? part1 #stopsicklecellabuse

    As a 5th generation Sickle Cell Patient and a very active SCD Patient Advocate, World Sickle Cell Day has always had a special meaning to me. It’s the day that the United Nations chose to uplift Sickle Cell Disease to a global level. By declaring to the ENTIRE WORLD, that as its largest hereditary illness, it deserves the spotlight for these 24hrs. It is the day that countless warriors, caregivers, nurses, doctors and advocates alike, have spent countless hours preparing special events to educate those who don't know, what Sickle Cell is. With the goal to shine a light on the damage that it does not only, to the minds, bodies and spirits of those who carry it but, to our families who watch helplessly, as we battle the excruciating pain, created by our own bodies, day in and day out. From the moment we are born until the day we take our last breath.
    This is the day that we as a community use as a sign of hope, that one day Sickle Cell Disease will have the recognition of the masses like, the big "C" and the global determination to find a cure. Or at the very least, extend us just a portion of the empathy, understanding and kindness that Cancer patients are seemingly entitled to but, for whatever reason, we are not.
    Today is the day that we proudly wear our red shirts, not just as an act of unity. But, also with the hope, that the government will see that there are more than 100,000 of us living with Sickle Cell in the U.S. and millions suffering from it all around the world.
    It is the day that we are to celebrate the strides, being made in science, on a daily basis. After all, 5yrs ago we were barely beginning to see the full extent and capabilities Stem Cell research would offer us, in terms of treatments and I dare say, a universal cure. Now we have 3 treatments passed by the FDA in just under 4yrs. All designed and created specifically for the daily management of Sickle Cell Disease. We shout from the monitors of our laptops and cell phones, "What a GREAT time it is for Sickle Cell!" because it seems that the days of hand me down medications and trickle-down research, are over. Finally, we have studies, that are solely for the purpose of finding us better treatments, more "user friendly" pain management and yes, a cure!
    However, in the midst of all that is good surrounding Sickle Cell, on this World Sickle Cell Day. I can't help but to be reminded that this is also, Juneteenth. A day marked by both praise and pain in the U.S. Today is the day that slavery in the United States finally came to an end some 2yrs after the Emancipation Proclamation was made law, to supposedly free the slaves nationally. Unfortunately, the great state of Texas either lost, or failed to read and follow the memo.

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    Am I wrong? #Lostandmisunderstood

    I feel like I'm stuck or lost and can't find that little light at the end of the tunnel when you know everything's okay. I have two beautiful, funny girls that look up to me but all I want to do is get away from them. I'm scared like I've never been and just want to be the mom I promised to be when they were babies and I first felt a kick in my belly. My brain won't let me think that and my aches and pains prevent that so I don't know if this is all in my head like people tell me or if I'm really lost? #Depression #SCD