It seems that I have lost a fellow Rheumatoid Arthritis friend over my blunt, informed, and unapologetic Anti-Racism stance. Though Durazo might put it another way…

Someone who I fully believed in, especially as they navigate their life with this horrible disease, whether a new problem or new journey. As an old soul with this never-ending disease, I know it helps to connect with others suffering from this same bullshit. Because it never goes away really. It just looks for sneakier ways to attack from inside.

Oh, what does that remind me of? 

I don’t recall saying anything rude nor truly problematic. Those who know me in real life or even long and well enough on here (but especially in real life) know that I’m capable of saying some shit out of nowhere. Zing! Absolutely brilliant stuff. Think like Wednesday Addams deadpanning. Wide eyes and dropped jaws abound.

But the people who know me in real life usually understand why I don’t sugarcoat things, especially when it comes to the issues of social justice and Anti-Racism. Especially those who have become my friends through 14 years of working together. Many of them see the problem of oppression within our society and community. Some actually live it. No matter what they do or where they go, they’re forced to experience racism. 

There are things I can get away with that they can’t because of my white privilege, such as calling out and naming a coworker’s and their racist action publicly, to HR’s chagrin. Because of that blindingly white privilege, there are many things that I have no room to judge any Black person on, whatsoever. Today’s lesson involves riots and looting.

Us white people have no room to judge how Black people feel in fighting for their lives, especially when it comes to the particulars of how they have to fight. I’m sorry that so few people comprehend this about Black Lives Matter. I’m not sorry that Designer stores were damaged during the urgency of protesting Black oppression. Also not sorry that I refuse to judge, again because that’s not my lane to ever judge within. Period. Not sorry that I (repeatedly) posted information to educate on the existence and psychology of “riotous behavior”.

However,  I am sorry that I held back on responding more, if at all, to their posts about the riots. Calling out unfair and privileged judgment. But I figured my Facebook posts (incessant as they are) would help do the work for me. I didn’t argue on their page since it’s often promotional for work in various industries. I generously respected that due to the shared path of RA. I rolled my eyes and scrolled right on past, tucking a little red flag away for the time being. I continued posting Anti-Racism information. 

Probem is…I notice everything. You just told on yourself. I see what you did there. Most might just unfollow, because as mentioned before, incessant posting sessions. And just like some in my family, after I had called out a problematic family member (racism and misogyny) for which excuses are often made; friends but not really…not anymore, since I made them uncomfortable, angry, bothered.

But that’s all right. They’re just telling on themselves. Just like you. It’s funny though. Us RA patients, we’re so used to being uncomfortable. In our bodies, from the physical pain. Uncontrollable, random, hovering always, threatening to ruin everything. I’m okay with being uncomfortable, at least more than most. I can sit with it. Acknowledge its existence. Unpack it and learn from it. But I tend to forget that not every RA patient, not every white person, is as seemingly capable or as comfortable nor as empathetic. This is a disease inside of us, destroying us from inside out. We pursue treatments to help ourselves and curb its destruction. We’ve got options available and we doggedly pursue obtaining them because we want to stop the disease, the destruction, the whole process destroying us from inside out.

But what happens when we don’t have options? Or when those in power over our access (insurance companies or government agencies, laws, etc.) stand in our way? We want to fight them. Make them listen. Get them to help us now. NOW. Not tomorrow. There might not be a tomorrow. It hurts so much. Well, what if they didn’t listen? Didn’t care? Negated and rejected us, our needs, our right to be comfortable in our bodies, our skin, at every fucking turn? And not just once, but repeatedly. Day after day. Environment after environment. Situation after situation. Generation after generation. 

Would you be calm, content to play by their rules all the time, even after having learned already that they don’t fucking listen, they don’t fucking care…just another body, another annoyance, something to reject. The little rules and policies that work for them will never work for you, because it’s designed that way. Designed to work against you. Designed to destroy you from inside out, a constant state of inflammation, burning and eating you up until there’s nothing left but desperate rage to be heard, to live, to be valid in the eyes and hearts of them all.

They want to destroy you. But you don’t want to be destroyed. You want it to stop. You want to live, to breathe. But you can’t breathe. Not anymore. You can’t hold that fire burning inside you, burning up all of your oxygen. Not anymore. You can’t let it destroy you ANYMORE. So you take the fire burning inside and burn it out through your body into the world, onto what they care about. Things, not people. Appearances, not humanity. Stores and their facades. Image and privilege on a pedestal. 

So when you judge their riotous behavior, you judge their right to be so justifiably enraged by how society is specifically designed to mistreat them in life, day after fucking day. Generation after generation. 

You expect people fighting for their lives to do so politely? Fuck off with that bullshit. So many Black lives have been destroyed. All killed simply for existing. Beating hearts slaughtered over and over, day after year after generation.

Burn that whole motherfucker down.

I’m really tired of healthy people bitching about the inconveniences of face masks and social distancing during a pandemic of a viral illness. At least y’all get some warning and know it’s around.

With chronic illness, it comes out of fucking nowhere and one day, you’re just sitting there wondering why you can’t bend your damn fingers. Why it hurts to get out of a chair. Why it hurts to lay in bed and you can’t sleep because it’s constant. And there’s no fucking cure. You’re stuck with a new normal and life is never again the same.

June marks 25 years since my diagnosis. Next fall season will mark my 26th year. I went from Fall to June and was becoming a cripple, at age 15/16. And people wanna complain about the pandemic new normal and wearing a face mask for an ounce of prevention.

Do you know how many of us wish we could have prevented our chronic incurable painful disease? So many people have already been robbed by Covid-19…patients, families, dead or injured. Why can’t anyone fucking realize that you don’t ever get that shit back?! It’s priceless. Once it’s gone, it’s fucking gone forever.

Do you really want that kind of new normal? The kind with no new memories? The kind full of tears and dust in the wind? The kind of normal where you can’t really breathe, either because you’re sobbing from your loss so much or because your lungs are so scarred by viral disease.

You better take that last deep breathe now, it’s going to have to last you forevermore. Remember, there are no guarantees.

But if you had that one chance, just that one chance to stop it…would you?

I’m here to tell you that you should. Don’t rob yourself into being devastated by death or disease.

And you will feel devastated.

That I can guarantee.

As an immunocompromised of over 25 years who depends on the healthcare industry and its workers, I have had it up to here with those who minimize or discredit health issues, such as being against vaccinations or minimizing global pandemics.

Today’s example is brought to us by Janie Hummel here in the Dayton, Ohio area. She claims Covid-19 is a benign virus. I’m certain that those who have died, as well as their loved ones, disagree for the obvious deadly truth.

Run a simple Google search and you can see that she’s even worked for WPAFB via healthcare.

Quite honestly, we deserve better from those working in healthcare. Your duty is to protect the health of the public but you choose to claim Covid-19 is a benign virus?

Unacceptable.

Running feels so free to do. It’s just you, your body cleansing itself from heart, muscle to mind. Pumping your legs. It feels like this freedom within the body. It honestly feels so good. And it’s so healthy for you. And Ahmaud couldn’t even have that. He couldn’t even have a nice run in broad daylight on a neighborhood street because 3 racists refused to see his humanity.

In those moments before the murderers crossed his path, he must have felt so free; In the wind, breathing deep. Yet he wasn’t free to run. He wasn’t free to deeply gulp in the fresh wind as he pumped his legs, feet striking the ground of the supposed “Land of the Free, Home of the Brave”. Imagine how good he must have felt when he started his jog. The wind in his face, body free and moving forward with his strength burning from inside his muscles, free to breathe. Then imagine his horror when he saw that truck, parked and waiting for him. You can see he is strong as he runs and changes course. You can see it as he is forced to fight for his life. But racism is stronger, disgustingly so. Racism is insidious. It kills with abandon. Racism killed #AhmaudArbery.

Every bullet was filled with hate. It took his breath away forever. No more running with the wind hitting his face, inhaling that fresh sun-filled air deep into his lungs. No more feet striking the pavement, pushing forward to free his own body and mind against the world. His life and body were taken from him by hatred for his life and his body because of the color of his skin. Never mind that his muscles and his bones were born human. He was his “ancestors’ wildest dreams,” as their quote goes…and then the horrifying nightmare of racism reared its ugly head to lynch him.

All he wanted in those moments was to run free in the wind. To run free, alive. Not run for his life, as he was forced to do in the end. But to run and be alive; feel his life, pumping through his legs into his heart, breathing deeply, exhilarated by the joy of being alive. When running, the movements feel like freedom. Fully alive. But racism doesn’t care how he felt running free in the wind. It hates that he’s alive. Racism slaughtered him to the ground, no longer free to live those “wildest dreams” of his ancestors, as the quote goes. There, one moment. Extinguished in the next. Racism kills dreams. Racism killed #AhmaudArbery.

Racism protects his murderers and then condemns the life of Ahmaud; a life running free in the sun and the wind, breathing in deep the freedom to be here now and soar with his own power pumping from his muscles through his feet. Racism stopped his feet. Racism stopped his heart. Racism took his breath and lynched him in broad daylight, slaughtered onto the street, treated like an animal and not as a human being. But he was a human being. Ahmaud’s whole life, as human as you and me! His murderers though, are monsters of humanity. They don’t deserve to be recognized as human “beings”…They don’t belong among us. Though they are…there are others like them among us, for racism is insidious. It hides and lurks in humans, in thoughts and rationalizations, not always buried deep. It’s on the tip of their tongue, waiting to be expressed, exposed, explained., treated as though innocent and innocuous. But racism isn’t innocent nor innocuous. Racism kills. It kills humans, people, friends, neighbors, loved ones, family, children, adults, human beings! It kills without remorse, repentance, reparations. Racism kills with impunity. Racism killed #AhmaudArbery.
#RunWithMaud

This current “normal” is what it’s like to actually reside inside the mind and heart of an immunocompromised patient. People standing too close to us in public. Now you see why we get cranky about it. Why we glare when you stick your arms and hands in our faces to grab something or when you hog the fucking aisle so that we can’t avoid breathing you when we finally have the energy to run errands. We’ve known how to open doors using different contact methods,  to avoid pain and exposure. 

Your germs have never been safe for us. Your colds. Your flu. Your oh so minor symptoms that you bring to work. Your fear of vaccinations. Your fear of the immune response kicking in. Your inability to flush the fucking toilet completely or even wash hands thoroughly. Crowding around us because you want in through the doors, buildings, or transportation.  Being depressed and disappointed for missing out on things because of our conditions,  medications,  and need for rest and recovery. 

This current reality? This is what we always have to think about, how we’ve lived, this entire time that we have carried our conditions within us. Always thinking ahead of exposure too. Because our lives, our health, our immunity has always been at risk.  Our treatments put us at further risk. You think you’re afraid of getting sick and dying now? Where have you been?

This normal is not new to us, at all. You think you’re tired, especially in coping with these changes to a new normal now? Try doing it for years. Fucking decades. And there’s no cure. No fucking cure for so many of us. All we can do is wait, rest, and try to get through the next day because that new normal isn’t going anywhere. Or hope that a ne medication will make a difference.  But they still have side effects.

Everyone’s treatment and response is different.  You can see the drug companies try to sell us the cure of a Utopian dreamland in which we can once again grasp that normal self who existed before crippling disease. But it’s a lie. A damned illusion.

Nothing will be the same, ever again. There will be another new normal. Accept it. This world can only carry us forward so much before it’s too late for to halt the damage of our social inflammation. We’ve been sick for so long, we don’t even recognize the truth in the mirror. The human disease has always been there. Nothing will get better for us if we continue to ignore the symptoms. You can try to fight it all you want. Believe me, all of us immunocompromised patients have been there. But it won’t cure anything. Now do you understand what it’s like to ache constantly and want to live life like you used to? But yet, you can’t.

With the new year just around the corner, I am motivated to pull a few tricks out of my gloves and smack them right onto my blog. A few ideas that have been percolating include:

• The reality of a Humira-fied existence while living with Rheumatoid Arthritis,
• A review of favorite things and tips that could prove useful to you,
• My decision to not pursue any further into the fertility journey,
•  How I’m doing with my depression issues,
• As well as calling out some bullshit, especially regarding current politics/social issues.
• And I might write more about my background and experiences as a chronic disease patient, former military kid (from Southern CA to the Far East to the Midwest), open heart surgery survivor, former Catholic and Republican (hey, military family!), and perhaps a bit about why I’m an unrepentant bitch regarding a few things (abortion especially that of my own, inclusion, mental health, etc.), who I used to be and why I changed. Or rather, am accepting towards change. We’ll see.

I wish I never found out that I’m infertile.

Wish I’d never thought of having one kid at all.

It’s been like the death of me for so long.

It entered my mind with Jeff, because he’s so good to me.

He’s so funny.

We were at his work picnic event and someone’s bald headed baby was crawling around on a blanket with a dog.

And I thought maybe we could have that…

But that was before my cardiologist confirmed that pregnancy could kill me and a baby.

My warfarin, which keeps my mechanical mitral valve functioning efficiently, could irreversibly damage and deform a baby.

If blood volume rapidly changed, as it does throughout stages of pregnancy, my blood could become too prone to clotting, risking my valve throwing a blood clot.

Or I could hemorrhage.

That was before I found out IVF and surrogacy isn’t an option because of premature ovarian failure.

I wish somethings didn’t fail me in life.

But this body is the only home for me to live in.

It’s a haunted abode.

We Still Love You

Those are the words, always said

To my heart, so full of dread

After I did something “wrong”

And didn’t feel as if I belong.

These simple words, she claimed true

Stung my heart, hole right through

And left me sad, wondering why

No other choice, I must comply.

Now grown, away from home

Free to think, thoughts my own.

A rising phoenix, I stand tall.

Shedding ashes, I give my all.

Burn away, old bits of mind

Heart beats on, clock of life.

Old dusty hours, sink into dirt.

Bleeding flowers, bloom with hurt.

Garden heart, must plow along

Sowing hope, here seeds belong.

Mercy drained out, to your doom.

Words remain, heart’s empty tomb.

An oldie but a goodie…my contribution to the ANRF blog!

Sometimes I need the reminder:

Flowering Among the Weeds of Arthritis

This piece came from a free-write exercise with the instruction to write about a “non-human watching St. Paddy’s Day.”

So of course, I just had to envision Trump as the “non-human,” so to speak! I know it’s a bit late or a bit early for this particular holiday, but maybe it’ll give a wee chuckle!

“I think that St. Paddy’s Day is ridiculous! Just ridiculous!

You have these people on the streets, no good people, drinking and yelling in green hats! Like they’re those…oh, what are they called? Lepers…leprechauns?

Yeah…and they’re out all night! Just drinking! And yelling! And they break things! They’re always breaking things…Are they even Irish?

I was telling Melania, who isn’t Irish by the way. I’m not either…what are they doing? What is the point of that? There should be a law…

And they drink all day, this green beer…I don’t drink beer, even when it’s not green! But they drink it. They seem to enjoy it. They get so drunk that they’re just all over the place…in the roads, blocking people, yelling Irish things.

And they’re not even wearing all green! Does that mean they’re Irish? I don’t know. Do you have to be Irish to celebrate St. Paddy’s Day?

I think it’s ridiculous. Just ridiculous! How they carry on…SAD!”

 

What other holidays might he find ridiculous?