Depression

Insufficient Storage

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Maybe I should write a story about sleeping one’s life away because of demands on it from my disease (need for napping was one of the first noticeable symptoms at 15), depression/antidepressant. and existing in a pandemic. Social interactions drain me more than before since my tolerance from 5 days a week is gone.

It could be nonfiction. Or fictional. A fairytale.

I tell myself “oh, it’s just the 4th vaccine this weekend” but honestly, I don’t feel it. My Humira wipes me out way more than these vaccinations.

And Jeff will often let me sleep, unless I have specific can’t miss plans. He knows I need the rest. I know I need the rest. But i just resent myself for needing so much rest.

This demand for sleep is a hidden cost of being immunocompromised, living with an incurable and disabling autoimmune disease.

Selfish people in this pandemic tell me and others like me to “just stay home” if we don’t want to catch Covid-19 and so that they can be selfish entitled assholes in a world designed for them and their entitlement.

But the thing is, I’ve always stayed home on my “time off” from work. And now I even stay home all the more, because work allows for it.

But it’s nice to leave the house once and again to pretend that I’m a normal person, who gets to do normal things.

They can’t stick us in asylums to forget about anymore.

I just keep sleeping the days away, hoping to wake up in a better world.

It hasn’t happened yet.

But maybe tomorrow….

Normal.

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I hate my disease. I hate having to be forced to give up so much time living with it, dealing with it,, treating it, pretending to be well when I’m not, especially in this ableist society.

I have my disease because an asymptomatic virus triggered something in my immune system to go haywire and turn upon itself as the enemy.

So now for almost 27 years from the promising age of 15, when you have your whole entire fucking life out ahead of you, I’ve had to fight and struggle against my own body, against the disease that too over as it has tried to destroy itself, Me, from the inside out. Then and now until the day I die.

But go on about how vaccines and masks are too much or too difficult or how they rob you of your “freedumbs”…

You want to know what robs you and your children of your so-called freedom?

A fucking virus that cares only to destroy from the inside out followed by a fucking disease that cares only to destroy from the inside out. And you fight an often losing battle trying to find the right treatment, trying to keep up with enough treatments to keep the autoimmune disease at bay. But just like a virus, autoimmune diseases are clever and find little ways to sneak through, forcing one to increase treatments or change treatments.

You want to complain about vaccine side effects? Look up the side effects for my fucking Humira and then get back to me. We aren’t doing flips and cartwheels afterwards like the commercials indicate. I’ve utilized this treatment since 2006 and one day, I know it will fail me. I’ve had to increase treatments to control my disease activity.

But go on and complain about how “you can still get Covid-19 if vaccinated.” Your immune system would have a fucking chance to fight it and protect your immune system’s health and future instead of being compromised to the point of triggering a destructive autoimmune disease, so get vaccinated.

It isn’t just imminent death and illness from the virus that you should fear but also the long term effects of surviving the virus.

Where’s your freedom when you’re seeing a specialist to find out why your body hurts and you can’t move easily, freely?


Where’s your freedom when you have to start treatments to control your immune system and hinder disease activity?


Where’s your freedom when you have to deal with prior authorization bullshit and insurance companies?

Where’s your freedom when you have to find copay assistance programs to afford your thousands of dollars treatment?


Where’s your freedom when you have to dedicate time to your treatment and its recovery?


Where’s your freedom when you’re too ill from side effects of treatment to do anything you want or anything that you had planned, forced to watch the world pass you by as you fight a battle against a disease trying so hard to destroy you from inside?


You want to complain about hating this “new normal” of the pandemic and quarantines?


Try the new normal of an incurable autoimmune disease and the new normal of a chronic disabling health condition.

Where’s your motherfucking freedom then?

Feel free to share. Maybe it will spare one child from losing their healthy immune system like I did at age 15..

Upsy-Daisy

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I like to bury things. Deep inside my head. Behind my heart. I bury the thoughts and the words, trying to stuff them down underground, to forget. Instead, they betray me by growing up and out into weeds. All hope of blossoming is choked out.

I had some hopes for this year. I attended a year-long writing workshop with monthly meetings, focused on writing that first draft. Though it started last August, I had chosen the New Year for that fresh boost to sit down and finally fully bleed onto the page. I felt ready at last.

But as I sat down on the couch for a December session with my long-time therapist, she shared that she had some news to reveal for the next year. She was ready to retire by March. She would reach her 40th year working as a social worker/therapist. It was time. I understood. But I felt my hope, my focus crumble.

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RA Blog Week- Day 1- Mental Health

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RABADGE2017

      Rheumatoid Arthritis feels like a curse: unfair, unexpected, devastating, and incurably troublesome. It rises up out of nowhere and takes over your life, robbing it of any trust you held towards the body that contains you. You look into a mirror wanting to trust what you see, at least until you discover that somewhere deep inside lies a destructive traitor. It leaves you feeling lost and overwhelmed, wondering whether anything will ever return to how it once was before.  The body that’s always been your home turns into an unknown abode with stuck doors and odd angles, full of shadowy corners and busted lights. You can feel it linger inside you. Will you ever feel at home again?  Continue reading

In Memoriam

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Hello again.

My last post gave promise of potential fire to spill forth. Unfortunately, all of the air needed for my intention to burn was sucked right out by a hole punched into my ticking heart. My Grammy, as that is who she has always been to me, passed away on March 26th. She was 91. It was always somewhat expected, and yet we never thought Death would swoop by so quickly. The weekend prior, she began exhibiting certain symptoms and behaviors indicating that she was ready to go and join my late Pappy.

By the following Thursday/Friday, her symptoms worsened. She sunk into herself deeper, and comfort care with Hospice support would be put into place. I finally worked up the courage to visit with her that last Saturday, the 25th, for two glorious hours. We thought she would at least have a few more days. She had only that night. But it was her time to go and finally be with her Bob again, after five years of missing him by her side. My beloved Grammy and Pappy, rest in peace, together at last.

The writing below was created the weekend prior to her passing. It was a way to process my fear of losing her completely, even though a part of her had become lost for some time now.

Conscious

Breath hooking upon the edge of wakefulness, Rose pulled herself up and out of the shimmering pool of slumber. Eyes cracked open against the soft lamp light, a surge of ticking in her chest as her body returned to the waking world to find that she had fallen asleep on the couch again. The TV screen showed images of a bogeyman chasing down screeching children, biting at them, until blood and gore revealed that the children were no more. Rose pulled herself up to sit properly on the couch and groaned. The last thing she needed to sleep through was a horror movie to gnaw at her dreams and wake up a bogeyman of her very own.

As Rose reached for the clicker, snatches of her dream world tugged at her. That’ll show her to ever fall asleep again with the horror TV channel left on to haunt her all night long. Dreams are designed to be confusing and revealing, but since she had started the antidepressant, her dream world had found a way to absorb her more fully into its skin. An eerie land of themes repeating night after night – going from one place to the other, with shadows of her past making the buildings appear far too solid to her touch. She traveled from room to room, seeking out the unknown purpose of this illusory life, hoping to uncover a brilliant treasure buried deep within herself, while always remaining oblivious to her delusion.

She leaned back into the velvet soft couch, pulling the fuzzy blanket up to cover her chilled legs and feet, smothering the nagging discomfort in her mind and aching bones. At 3 AM, the shadows of yesterday were still in a tug of war over surrendering tomorrow to become today. Black night still painted the windows, without any promise of the brilliant strokes of sunrise yet to be rise. The side of the world remained asleep, with the faith that a brand new day would greet them, whether they wanted it to or not.

Rose was not ready for tomorrow, let alone today. She wished the night could linger forever. If the sun did not rise, slumber could cover her like a blanket and protect her from a world that she was not certain that she wanted to live within. She was over it. Over having to get up, get dressed, and get going. Over pushing herself despite her exhausted mind and fatigued body, trying to live a life like any able bodied person, pretending to be free of disease. Her past depression had captured her once more, spinning her thoughts until she landed back where she had started all those years ago. She wished only to fade out from the universe, like a dying star that ultimately sucked itself out of existence. No light, no shadow. No air to breathe. No more thoughts to choke her. Only free to be, simply nothing. But the universe thought otherwise, waking her up each day whether she enjoyed it or not. And here she was, again, awake. Alive. Stuck.

The house was quiet save for the constant ticking of her heart. Both her husband and dog were already asleep in the master bedroom, oblivious. Tommy had learned to leave Rose alone and asleep on the couch, dead to the world, depositing her pill box on the table nearby for when she finally stirred back to life. It was easier that way; let sleeping dogs lie. She would wake up eventually, at 2, 3, or maybe 4 AM, taking the pills designed to keep her alive or convince her that it was all generally worthwhile. Though now after the news she received from her Mother last evening, she was not certain just how much more she could take.

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