RA Blog Week-Day 4-Hobbies: Writing

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My saving grace at this point in my life is the re-discovery of writing: as a gift, a blessing, my salvation instead of as a childhood school chore. It unexpectedly revealed itself over the course of the past several years, starting in 2013. My imagination flared to life from the ashes of defeat. The daydreams demanded their story to be known; make us real, from your heart and mind, as nagging as an aching joint. It’s taken this long to find the courage to acknowledge this part of myself and finally believe in it. Writing is the only way I can ever birth something from within me.  A creation brought into this world from the womb of my heart and mind, to grow and flourish into hope and wonder.

I’ve always been a daydreamer. I escaped into my mind as the bully pulled my hair and pinched me from between the small space of the bus window and seat. But I never wrote the dreams down. I just played it over and over inside my head, hoping that one day, this better world could be made real somehow. Writing was just a knack I had when it came to school papers; an expectation. I’d tried to keep a diary, but I just couldn’t commit to seeing my thoughts on the page. What if someone else found it? I got in enough trouble as a child, being a stubborn bronco of a mind. Oh, and surely my older brother would have tormented me in some way as part of his sibling duty. No, the creations had to stay hidden in my mind.

After developing rheumatoid arthritis, I felt that I lacked much worth. No idea about my future, other than it being full of disease, pain, and damage. That’s it, really. I was damaged goods. How could I expect to create words, art, and any expression when it hurt too much to live, let alone use my hands? So I coped by letting that part of myself go, and slide back into the past, an artist no more. Every now and then, it would call to me though. One incident that I’ve never forgotten was back when I was in a relationship with an artist. I had a simple idea to make something amusing, just to do, fleeting really, just for kicks. And he responded with “why bother?” Why bother, indeed.

It’s the absolute worst when someone that you look up to and believe in fails to give the same support. So much trauma from those days, if only I had written it all down, blood on bone. But I felt that it was too much to put into a form where it stares right back at me as etched memories. I know now that is why I couldn’t write during the 18 month span of heart health issues. It was enough to just get through each moment of the day. Nearly dying, six week hospital stay with first open heart, trying to sort myself out, going back to school, discover another issue with heart, cardiac tests and hospital stays, 2nd open heart, and then finally being done. Finally! But “what now?” My whole life had changed again; first time being RA, with this second time of a repaired and ticking heart. The post-traumatic stress reduced me to a super anxious frantic mouse that couldn’t make sense of the maze it had found itself stuck within. And then the betrayal happened with the artist and I just couldn’t take much more. I felt so shattered. I had survived health trials that proved to me that I am strong enough to carry on, despite doubt, fear, even the odds. But there I was, shaky with ultimate doubt, feeling worthless. What I thought was real was apparently a lie. Could the same be said of all I’d just overcome, especially with that jerk by my side through it all? (Two open hearts!)  What was the point of surviving if my heart was too heavy to hold hope anymore?

Thankfully, I knew enough to recognize that depression lies and obtained the mental healthcare needed for it, as well as my panic, anxiety, and PTSD issues. Now I can look back and realize that I still didn’t feel strong enough to face my fear and release all of those feelings, those thoughts, those blessings and demon onto the page. Wounds in my heart to bleed out through fingers crippled by disease. Instead, I let the words fester. How fitting that an infection destroyed my Mitral valve; a doorway in my beating heart torn apart and consumed by a festering poison. A sturdy new door was then stitched into me, with doors clicking and ticking away the moments of my life until it all winds down. I wish I had believed in myself back then beyond mere daily survival and planted the rubble of my story as I walked its path; a cobblestoned redemption. Only now am I able to put my butt in the chair, gloved hands on the keyboard, and pull out the weeds in my mind before they creep down and strangle my heart.

RA Blog Week-Day 3-Partners

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My partner is my husband. My best friend. The man I love.

Healthy for his whole life, his awareness changed after he met me, the woman in gloves.

He has been by my side through these years as I rise and I fall.

Rheumatoid arthritis, heart condition, infertility; arms close around me as I bawl.

He holds my hands while I wear gloves or bare and chilled to the bone.

He tells silly jokes and gets me to laugh when all I feel like doing is groan.

If I’m too tired to rise, he’s there to help me up, morning or night.

Sweet and kind enough even to help with the little things, like cracking open my Sprite.

He knows how to calm and soothe me, a most stubborn and cranky beast.

When I feel defeated, he hits me with his best shtick until my grumpy demons release.

Laughing together, he will pull me into an embrace, holding me tight and close.

He’ll take my hand to waltz around our living room, as our doggie hops all over our toes.

His smart, kind, and funny heart captured my own from ticking forever all alone.

He is my life, my love, my treasure, my true home.

RA Blog Week-Day 2-Tips and Tricks

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After 23 years, I have a few tricks and tips for coping with the issue of a chronic debilitating physical condition, even though I look healthy and normal. There are always little things that we have to think of that most able-bodied/healthy people may not consider at all when it comes to moving around. There are a few tools that can assist and provide some measure of comfort.

My favorite and best known tool is wearing gloves.  I wear them no matter what the weather, even in summertime. Of course, I get stared at funny for that too, but what they don’t realize is that hot weather is the best for soothing aching hands within a pair of gloves. When I’m out and about, driving too, I wear Isotoner unlined women’s spandex shortie gloves:

https://www.isotoner.com/p/isotoner-womens-spandex-shortie-gloves-56080?color=BLK

They can also be purchased on Amazon. Prices fluctuate on Amazon for these, especially depending on time of year.

For work/home, I wear Imak Active Gloves:

https://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=imak+active+arthritis+gloves&rh=i%3Aaps%2Ck%3Aimak+active+arthritis+gloves

Imak offers an Arthritis version, which is without the grippers found on the underside of the Active version. I prefer the Active version, as they seem to last longer and the grippers are a big help when grasping for an item.

To keep the chill away (thanks, Raynaud’s!) and provide warmth to my joints while at the desk, I use a heated wrap, which comes with handy pockets:

https://www.target.com/p/royalmink-chill-away-heated-wrap–throw–slate—sunbeam%C2%AE/-/A-51511752

You can place it over a chair for heat through your back. Wear it length-wise, covering your legs. Wrap it around hips, knees, shoulders. It’s just big enough without being too cumbersome as a blanket can be at times. It’s perfect for the office. It comes with a standard plug. I haven’t had any issues so far with it not working on me as some mention in reviews. I do think it helps to keep pressure on it so that the heat remains on more consistently. It will eventually turn off as part of a safety feature. While on, it does seem to run through a heating cycle: flaring hot at first, fading away over time, then flaring back hotter. Kind of like Rheumatoid Arthritis, but way better.

For some extra support for hands and wrists, which are my main joints damaged by Rheumatoid Arthritis, I’ve found that these items are helpful, especially if you need to type away!

A keyboard wrist cushion is a must have for anyone with RA typing on a computer. I found a handy laptops sized one here, and it offers an elastic to hold it around the laptop edge:

https://www.amazon.com/gp/product/B009R5SJGQ/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

A wrist cushion for the mouse is another must have! This one offers the option to buy one or two (one for home, one for work) and is super comfortable:

https://www.amazon.com/gp/product/B0714QSDSW/ref=oh_aui_detailpage_o04_s01?ie=UTF8&psc=1

Another item that also helps more than anything is a wrist/hand brace. I’ve tried a few over the years, but my favorite is by Futuro with their Slim Silhouette Wrist Support, designed for women (less bulky design, basically). They offer it for the right or left wrists; you have to buy the specific side. They are available here at Amazon, but I’ve also found them at Target and Meijer:

https://www.amazon.com/gp/product/B005X5U39U/ref=oh_aui_detailpage_o02_s00?ie=UTF8&th=1

Another trick I’ve learned over the years involve modification of movement in order to do common tasks, like opening doors. Heavy doors are one of my daily frustrations. I try to never push a door open with my hand flat out against it, wrist bent. If anything, I’ll turn the back of my hand against door, not bending wrist but holding it straight with my arm (like an extension of the arm) and use the lower arm with back of hand to push in. The main trick is to use my body weight to open it up, utilizing a bent elbow pointed out, my shoulder, a bent arm. If I need to hold a door open for someone behind me, I use a foot, arm, lean into door; anything to take the weight off of a particular joint area (such as hand, over stressing a wrist, etc.) and use the weight of my body instead through a larger limb/number of parts. Sometimes it can feel like a contest to come up with how to open a door without using actual hands (as most people do). If it’s a pull open door, I try to pull it open with enough force that I can catch the door with my arm bent, putting the lower half of it against the door itself, using the body weight through the arm and shoulder to hold it open. Granted, this only works if your arms/elbows/shoulders aren’t often flaring. But never use just the hand/wrist to carry the weight of the door.

Oh, another tip for doors, such as when leaving the restroom? Grab some paper towel to use for touching the door handle (unless you can push it open with a shoulder, etc.). I always do this at work. I’ve heard a few too many people just walk out of a stall and pull open that door, walking out. Eyes wide, horrified. “Did I just hear them leave? Yes, I did. Ew.” Our immune systems have enough to deal with, we don’t need any of that bullshit, right? Paper towels to the rescue!

Back during my “Still-a-Good-Catholic-Under-My-Parents’-Roof” years in my late teens, Rheumatoid Arthritis made it complicated to extend the “Peace Be With You” without my hand being crushed by others, let alone the Priest (this has happened). Not such a peaceful blessing when it triggers a hand flare. My Mom actually came up with an effective solution: clasp hands behind the back and bow forward, stating “peace be with you” while smiling (crucial!). If they look confused, it’s up to you if you want to tell them why you’re neglecting to offer your hand during the sign of peace. You have RA. It’s not worth suffering a new flare. Also think of the germs you’re sparing your compromised immune system. Can you be certain that they always wash their hands after using the restroom? It’s not really a sin either (though it should be!)

Lastly, the biggest tip/trick I have is to remember to give yourself permission to take care of yourself. You’re allowed to say no. You’re allowed to say yes. You’re allowed to stay in. You’re allowed to go out. It doesn’t have to involve anyone else. It could just be a date with yourself. A chance to sit outside in the warmth of the sun, while sitting in the yard or in a park. Or watch from the window or out back as the sun sinks down and the moon rises up in the dark. You are allowed to be mad. You are allowed to be sad. You are allowed to tell someone else if it gets to be too hard. You are allowed to ask for help if you feel life’s gone too far. You are allowed to want to do everything on your own. And when you can’t, you are allowed to be frustrated and groan. You are allowed to try. You are allowed to cry. You are allowed to scream at the heavens demanding “Why?” You are allowed to feel joy, laugh, and smile. You are allowed to need your time and energy to be spent on what you consider to be worthwhile. Find something that always brings you joy. Something that RA can never destroy. Keep it within easy reach for those moments, days, (years…) when life is too overwhelming to cope.  Use this as a tool to ignite the fire inside of you and give rise to hope.

Take care of you!

RA Blog Week- Day 1- Mental Health

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      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

RA Blog Week 2017

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I will be participating in the 3rd annual RA Blog week this year, which funnily enough, begins after a Humira weekend and on the day of a rheumatology appointment. So I’ll be primed and ready to contribute on the #chroniclife of RA!

 

Trigger, trigger…

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The gnawing chasm of infertility was awakened tonight, while online. It woke up, yawned wide, and threatens to consume me whole. In my resentment, I remembered this piece I wrote for a writing class. It’s about the day I got that final lab test result phone call where I found out that my ovaries decided to retire to Boca Raton already. The ticking in all of my writing refers to my mechanical Mitral valve. My heart is a clock ticking out all my remaining moments, not just a beat to walk to anymore.

Beginning – Spark

Tick, tick, ticking away, her heart ticked hard and loud behind her healed ribs. Shock flowed out from the center of her twisted gut and spread up and out to all distant corners of her body as she listened to the Doctor speak those words. Those awful words. Rose stood in the parking lot under a sunny sky wiped clean of clouds by the wind while the words revealed that it was too late, her levels too low. Darkened clouds rumbled from along the edge of her thoughts, threatening to drown her in an overcast mind. Grief struck ground first, followed by despair’s mighty roar. The fantasy that she had maintained for at least a year now, often ballooned by hope, just deflated in the blink of an eye. It had all come to this. Now. Not yesterday, not before the doctor appointments, the tests, the hopes, the dreams, the fears…

Those fears were real. Aged 36, Rose’s fertility was no longer ripe for the picking. She may have looked young still for her age, but her ovaries had aged considerably. The doctor was not certain as to why, as it could be any number of things related to her age, stress levels, medication, or her health conditions. But the why did not really matter. Not that much. The answer remained the same: it was too late. Levels were undetectable. The beginning of a little family, just one child to call their own, had stopped before it could even start. The spark that held so much promise in its flicker quickly vanished. Despite the sun shining brightly overhead, Rose was left in darkness, all encompassing.

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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