DIARY of A SICK BLACK GIRL

Life, Lessons & Adventures with Sickle Cell

[mcors]

Share

I'm raising $20,000 until 08/20/2022 for #STOPSICKLECELLABUSE. Can you help? https://www.paypal.com/pools/c/8LIU4fc268

#STOPSICKLECELLABUSE

#STOPSICKLECELLABUSE is a grass-roots, health-care centered, social justice campaign, aiming to end the unfair and discriminatory practices,

Help us fight to end the discriminatory and unjust treatment many of have faced (and are currently facing) at multiple points of care when seeking treatment.

Axis Advocates are not only here to assist patients and the hospital bedside but, we help to write and send in complaint forms to every local, state and federal office needed.

With the hopes of not only, having these facilities and their employees investigated by a 3rd party but, to collect enough formal complaints, to seek out an attorney for a class action lawsuit, starting next year.

[mcors]

https://www.instagram.com/tv/CFbBvu6DnVu/?utm_medium=share_sheet

Someone explain to me exactly when doctors and nurses stopped working within the boundaries of science and evidence based treatments and started solely relying on their feelings to treat patients? If that's all they need then why are they going in to hundreds of dollars of debt for advanced degrees and training? Make It Make Sense...

[mcors]

#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?

[mcors]

World Sickle Cell Day & Juneteenth 2021

What Do They Mean to Sickle Cell Warriors?

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. Thus, declaring to the ENTIRE WORLD, that as its largest hereditary illness, it deserves the spotlight for 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. For whatever reason, on this day the remainder of America’s slaves, were finally released from a lifetime of bondage and over 150yrs later the U.S. government has declared it a national holiday. Which we celebrated for the first time yesterday.

I think its befitting that World Sickle Cell Day and Juneteenth, share the same day. As both commemorate and remind the world of two groups of people, that have not been given the recognition, respect or acknowledgement that they deserve. As a country, we are just barely scratching the surface to understanding how the legacy of slavery continues to guide the everyday lives of our citizens. Mainly, through the legacy government policies of red lining, disproportionate jail sentences for people of color, and a policing system that can't seem to teach its officers to have the same patience and "out of the box" thinking, when it comes to peacefully disarming a white person. Yet, allows and seemingly insists, that in similar situations where black and brown people are involved, the only option is to pull the trigger. After all, they only have a "few" seconds to make a "lifesaving" decision but, that life in question rarely seems to be that, of the armed officers.

In the same spirit...Sickle Cell Disease was discovered 125yrs ago and was Immediately classified, as a "Black" disease. It seems those same "legacy" government policies, guidance systems and thoughts of Black's as being "Lesser", were simply rolled over and applied to an entire illness. Leaving generations of its carriers and families to care for and educate themselves, on an illness that continues to cause just as, if not more, mental and emotional pain than, it does physical harm.

Yes, it is befitting that the two share the same day because, as a society we still don't want to fully recognize and accept the legacy of systemic racism and personal bias that slavery as cursed us with. While at the same time we praise the advancements, science has brought to Sickle Cell but, still allow its patients to be dismissed, disrespected, discriminated against and disenfranchised, when seeking medical care in ED's across the country. 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

[mcors]

Sickle Cell Patients Suffer Discrimination, Poor Care — And Shorter Lives

People with the genetic blood disorder that mainly afflicts African-Americans can live into their 60s with competent care. So why is life ex

[herebutiimgone]

It’s breathtaking to see it in color.

[mcors]

Marissa Cors

Marissa Cors is feeling determined.

If this can happen to a Sickle Cell Disease patient...It can happen to ANY CHRONICALLY ILL PAIN PATIENT!

[mcors]

Marissa Cors

Marissa Cors is feeling determined.

If this can happen to a Sickle Cell Disease patient...It can happen to ANY CHRONICALLY ILL PAIN PATIENT!

[marsthegod]

[mcors]

and you are VALUABLE in EVERY WAY!

[mcors]

Letter to a Caregiver

Dear Caregivers,

It’s hard being the patient. However, being the caregiver is a far more complicated position to be in. You feel everything that your loved one does and even worst, you actually see it. As patients, we feel and communicate the pain to the best of our abilities but, we don’t see ourselves…you do. Not only, do you see the pain and suffering on our faces. You hear it in our voices and feel it in our hugs. As you deal with everything else that’s happening around us. You are the ones who prevent so-called “healers”, from making a difficult situation, a deadly one. You advocate endlessly … constantly on guard. Making sure we get the absolute best care, that the staff’s experience and education are capable of, and that the facility has to offer.

In that place, that is our 2nd home. You endure the humiliation and doubt that you are capable of caring for your loved one. Despite, having lived with the disease and the patient, day in and day out, for years and even decades. As you fight for the most basic of services and the acknowledgement of not only, your loved ones suffering but, yours as well. As you’re told that your knowledge is irrelevant, because you don’t hold a medical degree or license. Despite the fact, these “experts”, have a 10th of your knowledge and experience. Their formal education, excluded all of the training and facts, necessary to care for your loved one. Thus, your opinions, wants, protests, observations and directions fall upon deaf ears. To make matters worst, their egos wont allow them to read the chart or care plan . Let alone, speak to the primary care physician or specialist, that’s saved your patients life numerous times.

It’s frustrating, irritating, frightening, and enough to make anybody crazy. Just when you think you’re going to crack. You are reminded that your eyes, ears and mind, must be on guard at all times because, no one else’s are. You go on mentally, emotionally, physically and spiritually… exhausted. Driven by unconditional love, and hope that better treatments, or dare I say, a cure will soon come.

You rarely hear “Thank-You”, “Good Job”, “Do you need anything, or How can I help?”… Please know that you are greatly appreciated and loved. The words needed to express our gratitude, have yet to be created. You are the pillar of strength, knowledge and love from which we as patients depend upon. Especially, on those days when our worst pain, has invaded every part of our body. To the point that it hurts to even pray for relief. On those days you are our spirit.

Thank-you with Love from a grateful patient.

[mcors]

[favorite-aesthetic]

I love the moon

[mcors]

A Sickle Cell Child

by Hertz Nazaire

Just coming back from the 46th Annual National Convention for the Sickle Cell Disease Association of America, Inc. (SCDAA).

On Friday, October 12, from 1:30 pm – 3:00 pm for the Lonzie Lee Jones Patient Advocacy Symposium. We played an educational version of Hollywood Squares, everyone was having a good time happy, laughing, and smiling. 

We all know how heavy the Sickle Cell topic can be for all of us touched by this pain.

A fellow Warrior in the audience stood up at the end and gave us all a shock to the system.

A reminder that this pain runs very deep and everyone is trying very hard to find a way to erase it from existence. 

What she had to say comes from a line of talk, that we hear often. How to stop a child with Sickle Cell Disease from ever being born. Many people push hard for couples to get tested and knowing their status. But some people feel strongly that none of us who have the Sickle Trait or Disease should ever have sex and hells no on having a child.

So sitting there on stage with a group of successful adults and young people who have been standing against this pain all of their lives and still finding their gifts through hard effort. I felt drained.

I spoke out loud, not to reply to the beautiful young lady saying these things, but to myself.

I needed to remind myself, that no matter how depressed I get in this life, no matter the hardships I face, I still want to live. I still want to exist. I still have my art to create.

I am really tired of people thinking they have a right to erase my mother's choice. One of the very few things I know about my mother is the fact that she told me that my father wanted her to have an abortion when she got pregnant with me. My mother made a different choice. And I exist in this world because of that choice. A sperm cell is nothing without an egg, and an egg is nothing without that sperm cell but although it take the two. This is a choice that I feel only a woman can make because her body has to carry that life forward, while most men can simply walk away like my father did, like my step-father did.

I had a chance to be a father once. On September 11, 2001. I made love to my girlfriend and we had the chance to bring a life into this world. The thing is, I was not even thinking about her Sickle Cell Trait status. I never really had a chance to think about it, not in this world. Mental Health had more to do with why a choice was made and I never became a father. 

I blame myself even now, that I was not strong enough to guide her through her sadness and tears about the pregnancy. I was still there with her although I wanted to run, I was at that Planned Parenthood office in that waiting room watching 12 year olds making the same choices adults should only make. I was 28 and I thought we could have made a different choice together.

I still feel that this was my greatest failure as a man, I wish I had more money, it is always about MONEY! I loved this girl but honestly in the end I see like most women who enter my life it was about the sex and how long my priapism fueled penis lasted.

I try to give myself some slack, because you have to understand being a male with Sickle Cell is HARD! You have to try so much harder to get a girl to notice you. We try HARD to please the women who enter our lives. I was always the sucker who wrote the love poetry, and got the roses delivered without the need for a holiday. I was a painter so most women I've been around long enough have a portrait I painted to show them they were on my mind.

When you live with Sickle Cell Pain and this pain only has one thing to show you about living in your body. It HURTS! It hurts badly! Then you discover sex and become driven to turn it into an art. I had a long distance girlfriend who called me "Voodoo Dick" she would drive the 5 hours it took to get into my bed when she had time off from work. 

I was young and still pretty stupid and we would have these marathon sex sessions, and because of my Sickle Cell and Priapism, we once went at it for over 8 hours only stoping for short breaks of water. 

Priapism is the worst kind of Sickle Pain a man can have, it takes everything from you mentally.

It crushes you and it can take away your ability to even feel like a man. Sometimes for me these erections came without the pain, I don't know why but I was always grateful because the pain was never a pleasure. At the time I was young and sex was just one of those challenges I had to work harder at than any other male.

Everything in my life takes a huge amount of effort, I have been in love many times. I have also been deeply alone for the past 12 years. Because I love women way too much but I can't be stupid about my efforts any longer. I am still a very sexual creature inside and any woman who enters my life would need to know that about me. Even at 45, my heart may not survive some of the things I did at 25 but I am very intense about all I do. My sexuality is still very intense and focused on art creation. Anything you can't put all your effort into is just not worth doing for me.

Women have told me in the past that I am too intense, intimidating, or feel they have to walk on egg shells around me. I take them at their word that I am that type of man. I don't enjoy stress, I have been hospitalized enough times over needless drama. Fighting for your life in an ICU just because someone does not understand that picking a fight just to stress you out is not a healthy way to show love.

I've been abused enough in my life, I don't want to be an abuser when all I want is someone to love and share my days with me. Not all my days will be pain free. Nothing in my life is painless, I am surrounded by eggshells so you'll need to learn how to walk on a minefield. I don't avoid something because it's hard. I want to use my energy and effort in the best and most efficient way possible. 

We are all going to die someday none of us is immune from Death is is our fate. But we have to learn to respect that all lives should have that chance to exist and go through that process we call Life.

Having to hear that someone's purpose in life is to find the most efficient way to make sure others with my genetic make up no longer exists in this world is deeply hurtful to me. I understand the problem life with Sickle Cell is really hard, I know this, I'm living that life.

I just don't understand your rejection of the efforts it took for me to still be here standing in the same space and breathing the same air you breathe. 

Spend all the effort you want on Sickle Cell Trait education to avoid more lives of hardship like mines. My personal feelings are your efforts are misguided.  The answer is not how to wipe us out of existence so you can get rid of a pain disease that is hard for you to look at. A life is a life. 

My life is providing this world with a challenge I understand that, but I have no choice but to live this life and fight for my own existence. I want to survive because my brain has the awareness that my life matters even when it is painful to live that life. It still matters that I am here. I understand I am not the best man or mate for anyone to fall in love with.

But instead of trying to get rid of people like me, should the effort not be on how to make my life better? How to end my painful moments, how to help me carry out my purpose?

If I was born brain-dead I would not want to be here, I would not even be aware that I wanted to live or even what the concept of life means. My brain is aware that I exist. Most of my body still functions well enough for a decent life. In fact I know I am having a far better life than most who never have to face the challenges of Sickle Cell Disease. Many are born into terrible conditions of existence surrounded by war, hatred, and deep poverty. A suffering that no human should go through. Yet no one is staying let's educate the world about stoping these people from being born into these conditions. No they recognize that the condition is the problem not the life living it. The condition should be the focus. 

We are buying into an idea where we are saying these people should not have been born. I know some in this world think I should never have been born because I am Black. Simple as that! Now we are giving them the excuse of Sickle Cell Disease to wipe us out? Because Sickle Cell is Hard? Hard on who? On them?

Educate people to make their choices all you want. I have spoken to a few mothers who had to make that choice when they found out they were pregnant and found out both the man and woman have the sickle cell trait. They wanted to know about my life so far.  I told them of all my hardships and challenges. And they made a choice based on my experience. 

Yet my challenges, all came from the fact I only knew my mother for about 5 years of my life.  She died when I was 13 and I did not start to live with her until I was about 8. Educate these people with compassion, do not teach them that there is only one acceptable choice or one moral choice based on your life experience. Not everyone is ready to be a parent, and not everyone should be a parent regardless if Sickle Cell plays a role in that choice. 

[mcors]

How Do You Know WHEN to tell a child about SCD?

You know...I was raised in a very controlled environment. My "hospital" life never crossed paths with my "home" life. Everything was separate. My medications, activities and actions(I was allowed to tell adults NO in the hospital but, never at home). When my sister was born I continued that process. Not only because it was something that I was familiar with but, I felt she had the right to come home with her friends and not be uncomfortable. She could be safe knowing they weren't going to walk into a hospital room...you know? I would go out of my way when I was in crisis to be "normal" especially, if her friends were visiting. I made sure to be dressed as if I were on my out. Complete with make-up, jewelry and my hair combed (which should've been a huge clue something was up because I rarely comb my hair.The brush and I just don't have good relationship, lol). I would always come out of my room to speak to them and always made sure to smile and laugh. Eventhough, I felt like I was dying inside and those smiles took everything in me to produce and they hurt like hell. Despite all of that, I wouldn't exhale until I got to my room, behind closed doors. Even then, I would be vigorously packing and cleaning simultaneously as not to leave anything out that could lead to awkward questions from her friends. I made sure things like medicine bottles, colorful rolls of CoBan (that our dog always found and made his personal toys) and used hot packs were always put away...hidden even. As not to contribute to an unnatural environment. Unfortunately, I couldn't protect her from her own eyes. Like most children who live with a relative with SCD, she had to go to the hospital with me and my mom, from time to time. Usually, she slept through the ER battles. By the time she came back to visit, the worst of the crisiswas over and everything was under control. When I came home all I brought with me was extreme exhaustion and snacks that were the perfect size for school lunch bags, lol. So, I always thought that she didn't really know or understand what was happening. I was wrong!

One night when she was about 5yrs. old I went I to a really bad crisis. It came on hard and quick and we had to act fast to get to the ER. As always she slept through the car ride, check-in at the ER and continued to sleep when I was taken to a bed. Or so I thought.

As I went through the usual ER back and forth with the doctor's; desperately trying to convince them that I really was sick despite "not looking" like it. Then, arguing about what medications I needed, how frequently and in what doses. Finally, the nurse came in with my medication. As always, I asked her what she was giving me and how much. As always, she didn't have the right doses. Before I could correct her my sister's head popped up and she looked at the nurse and said "That's wrong! Those are wrong! They said 10 and 50 you're wrong.". The nurse looked at me, put the the vials back in her pocket and walked out. A few minutes later she came back and set each one out on the counter in a line. One by one she showed them to my sister and asked her to read the numbers out loud. Only when she was satisfied did the nurse draw up the meds and give them to me. What I learned that day was this:

Despite all my best efforts to protect her she was still exposed to the harsh reality of this disease. All of those years I thought she didn't understand or was too young to handle what was going on. She was soaking up every thing that was happening.

Did she get that I was in pain because there wasn't enough oxygen being dispersed to certain areas of my body? No. Did she understand why the ER is a constant battlefield for me as an SCD patient? Not really. Did she get that I was hurting emotionally, mentally, as well as physically? YES! It was written all over my face and she could hear the distress in my voice. All those years that I thought she didn't know, because I didn't tell her. She was watching, observing and learning the entire time. We can't control how other's learn regardless of their age. Especially, when the lessons are a direct product of their environment. All I could do was reassure her that I had things under control and everything was going to be alright. As those incidents continued to happen throughout her childhood. I continued the difficult process of balancing what she was absorbing with age appropriate explanations. Overtime it got easier and easier to have those conversations.

[wordsnquotes]

1.

Take a shower, wash off the day. Drink a glass of water. Make the room dark. Lie down and close your eyes.

Notice the silence. Notice your heart. Still beating. Still fighting. You made it, after all. You made it, another day. And you can make it one more.

You’re doing just fine.

— Charlotte Eriksson

[wnq-writers]

2.

My life is a struggle between my need for acceptance, my fear of rejection, and a desire to not care at all.

— Anonymous

[wnq-anonymous]

3.

The best revenge is to improve yourself.

— Ali Ibn Abi Talib

[wnq-music]

4.

No one is you and that is your power.

— Dave Grohl

[wnq-movies]

5.

I still love the people I’ve loved, even if I cross the street to avoid them.

— Uma Thurman

[wnq-art]

6.

I need to be alone for certain periods of time or I violate my own rhythm.

— Lee Krasner

[wnq-unknown]

7.

wnq-unknown

[wnq-quotes]

8.

It is a lonely feeling when someone you care about becomes a stranger.

— Lemony Snicket, When Did You See Her Last?

[wnq-words]

9. 

vorfreude

— (noun) A German untranslatable word, vorfreude is defined as the intense euphoric sensation you experience from thinking about future plans and daydreams. This beautiful feeling is a natural reaction the human mind manifests from expectations of future pleasures and joyful anticipations, such as planning a trip, going on a date, and many other fulfilling, life-changing events. 

[wnq-quoteoftheday]

10.

Do not tell everyone your story. You will only end up feeling more rejected. People cannot give you what you long for in your heart. The more you expect from people’s response to your experience of abandonment, the more you will feel exposed to ridicule.

— Henri J.M. Nouwen

[wnq-typography]

11.

Unspoken | @wnq-typography

[wnq-philosophy]

12.

Alan Watts | @wnq-philosophy

[wnq-psychology]

13.

if you want to get better, you have to find out what you’re avoiding and what you’re afraid of. and maybe what you’re disgusted by. you have to expose yourself to that voluntarily, and you have to let that change you. it’s not a pleasant process. it’s a voluntary confrontation of things that make up life’s horrors. — Dr. Jordan Peterson | @wnq-psychology

[wnq-science]

14.

Now you could love a snowflake just because it’s pretty, but it doesn’t take away from its beauty that it was sculpted by chance and physics. To me, that adds to the beauty.

I have to say, this whole “we are unique snowflakes” thing is pretty cheesy. It might be the most overused metaphor in the history of metaphors, so let me give you a new one:

Snowflakes are symmetrical, but they’re not perfect. They’re ordered, but they’re created in disorder, every random branch re-tells their history, that singular journey that they took to get here, and most of all they’re fleeting and temporary. Even if sometimes they don’t look so unique on the outside, if we look within, we can see that they’re truly unique after all.

Stay curious.

— The Science of Snowflakes, It’s Okay To Be Smart

[themotivationjournals]

15.

If you want to be happy, you have to be happy on purpose. When you wake up, you can’t just wait to see what kind of day you’ll have. You have to decide what kind of day you’ll have.

— Joel Osteen

[mcors]

Just a few things to keep in mind on those days when it feels like you can't do anything right

[chronicallyliv]

“My wish for you is that you continue. Continue to be who and how you are, to astonish a mean world with your acts of kindness. Continue to allow humor to lighten the burden of your tender heart.”

— Maya Angelou  (via purplebuddhaquotes)

[mcors]

The Most Hated Patient in the Hospital.

I’m so sorry to all of the SCD patients who are being made to feel like you don’t matter. I too have felt this way many times when I’ve been admitted. It’s as if the entire staff just hates us! My last visit made me feel like the most hated patient in the hospital. It seemed as if every nurse, every hospitalists were doing all they could to keep from caring for me. I just don’t understand why we as SCD patients get such a visceral reaction from the staff.

As if they think we purposefully go into a crisis just to mess-up their day! Nevermind the fact that the pain is so excruciating, I wouldn’t wish it on the Devil! Unfortunately, for some reason, they want to believe that their patients are lying and their eyes are lying to them. Rather than, to treat their patient properly and with dignity and respect. What am I missing?

Why has this become the standard or lack there of, for treating SCD patients? Why is this culture of disbelief, disrespect, denial, and disease profiling acceptable amongst colleagues in the medical profession? Are you all just so intoxicated by your own arrogance, ego and the autonomy you have over others lives, that you no longer care? Or is it just easier to be a coward and follow the broken system that was set before you rather, than stand up for your patients?

We are constantly blamed for our own pain. Often scolded like misbehaved children for “waiting so long to come in” to get help. The question is why do the majority of us do so? Could it be that we don’t want to be told that the pain is our fault? Perhaps we don’t like the never-ending accusations that we are just “drug-seeking addicts” who are ALWAYS misusing/abusing our medications. Maybe being frequently told that because we don’t look/act like we’re in pain, we aren’t in pain. When the reality is we just don’t fit your vision of what “real pain” should look like. Guess what? That’s a personal problem that you all as medical professionals ought to be professional enough to work pass. If for nothing other than helping to relieve the suffering of your fellow man.

That’s just too much like right. Heaven forbid you acknowledge the validity of 100yrs of scientific research that has proven SCD is in fact a real disease. One proven to be a mutation to protect the body from Malaria. In doing so, causes the red blood cells to implode. Thus, failing to deliver enough oxygen throughout the body and causes horrible, debilitating pain in its carriers. Yet you all are still asking “How do I know you aren’t faking?”. Let’s be honest, this shouldn’t even be a question. You all should rely on science, patient history charts and the patients experience with their own bodies.

Instead, so many doctors are just caught up in this idea that the patient “wont get over on them”. Like, they are going to win some kind of trophy for not showing basic humanity and ignoring the suffering in front of their eyes and the education they paid so dearly for. Or is it that as doctors you are in consistent conflict and competition with each other? Thus, leaving patients caught in the middle of the pissing contests? In which, doctors are constantly trying to one up each other. By not listening to colleagues advice, previously written orders and pain plans. Or flat out refusing to even contact them because doctors just “don’t need hand holding”.

Again, I don’t know why things are this way. What I do know is this:

1- It’s wrong to pick and choose whos pain is more legitimate and worthy of being treated.

2- Allowing your ego to interfere in how you treat your patients is wrong.

3- It’s a coward move to blame and label an entire group of people as “drug seeking liars and drama queens”. Simply because those before you have done so.

4- It’s even more of a cowardly move to just fall in line and continue the tradition of mistreating SCD patients. As if we just don’t matter. As if, you forget we have loved ones…parents, kids, siblings, friends and life partners who are just as worried about our well being. When you mistreat us, you are mistreating them too. What did they do to deserve watching the very people that they’ve just carried their loved one to for help. Get mistreated and degraded by the person that should be helping them.

5- The doctors attitude and opinions often influence the staff that works under them. No matter how much we say nurses have their own will. People are people and it’s very hard to be around the constant negativity and stereotyping of a group of people and not be affected by it, even subconsciously. Add to that they have to carryout the doctors orders whether they agree with them or not.

6- All of these things are actively contributing to the escalating death rates in our community. The stereotyping, “drug seeking/addict” labeling and refusal to listen to science, read patient records and listen to the patients experience and understanding of their own bodies. Are direct contributors to this sad, common and unnecessary phenomenon of death amongst SCD patients. Especially, those who are in transition.

I feel like the answer is so simple:

Believe us when we say “I’m in pain”, don’t question it. Please believe that we have better things to do other than, hanging out in a hospital. Read our charts and listen to our doctors and specialists. You are not going to suddenly fix what you perceive to be a “SCD Problem”, by ignoring the pain plans, orders and experiences with patients from the doctors that came before you. Asking for help is not a sign of weakness and can save a person’s life. Please start asking questions and actively listen to the answers.

Finally, start looking at your patient as a person. When doing so, please try to put your loved ones in our place. In pain, knowing what they need to get better and being ignored by the very person that should be helping. All because the doctor is too lazy, too much of a coward and too wrapped up in their own ego and arrogance to listen to those with more experience. For being frustrated and afraid, your loved one is punished by being ignored, disrespected and made to feel like they aren’t worthy of the care that the staffs education and experience can offer. All because the culture of care dictates that they don’t have to provide adequate care and protection for patients with a certain illness.

[empathwitchliv]

My greatest work has come from places of pain and trying to overcome whatever obstacles were set in my path at the time of the birth/creation/recreation of whatever special “thing” I created whenever I needed it most

Art and self expression are immense catalysts for change

And I think that’s such a beautiful thing

[mcors]

So TRUE!