Autoimmune Disease

Honestly.

Don’t give up on this post.. All that I ask is that you hang in there with me.

“I wandered through fiction to look for the truth — buried beneath all the lies. And I stood at a distance to feel who you are — hiding myself in your eyes”

I’ve tried through my posts to pull the positivity out of chronic/invisible illnesses. Let’s be honest.. there is not much positivity.

Maybe on my good days, but I haven’t written on my bad days.

What kind of portrayal am I giving you if I dont show you what the entirety (and actually, majority) of what chronic/invisible/whatever this world wants to label me illness has given and done to me all of this time?…

“And you ask me what I want this year, and I try to make this kind and clear: “Just a chance that maybe we’ll find better days.”

This world wants happiness. These societies want kindness and love.  Our world gives us too much sadness for our hearts to handle. But who am I to say that Sjögren’s and Fibromyalgia is all kittens and daisies when I sit here with my heating pad tightly wrapped around my ribs because every breath that I take hurts me to my core?

Let’s be honest.

Within these past two days, my pain has sent me to nausea, to light headedness, to a world where I have no where to rest.. I awake several times at night with every bone in my body collapsing (it feels like). I continue to attempt to sleep… praying that the heat from my dogs and heating pad together will bring me some peace.

Food makes me nauseous. Drinks make me nauseous. WATER makes me nauseous.

My eyes are dark with circles that I can feel deepening.

My joints have to be moved carefully in case they choose to pop out on me with any simple movement.

My ears split with dogs barking, loud volumes, and as I lie awake at night, I pray that people’s car radios from 100 feet away, of which I can hear every word, take me to sleep.

My nose is sensitive. I’m not sure of another word. Any random scent could send me spiraling into a head splitting migraine with sensitivity to light, sound, and noise.. even worse than the sensitivities already are.

My hands shake.

I lose my breath fairly often, even while only showering. “Pause. Deep breaths. Fill up your lungs – but not too much, because you’ll pain your ribs.. ” It takes a second to feel as though I’m actually soaking in oxygen. It’s almost a panic response… but if I panic, it slows down the entire process and makes all the more difficult.

My ribs are a world of their own,  sat aside and rolled onto the assembly line to be demolished by two huge crushers, and then rolled along to be with the other tightly assembled bricks.. used to build a community of hidden pains and negativity.

“You could hide beside me, maybe for a while, and I wont tell no one your name.. I wont tell them your name.”

My pain medications, recently, have reacted against each other. And one choice my doctor gave me (“If she WANTS to…”) is to withdrawal from tramadol and lyrica… (I dont think I understood the option before I quickly said “yes!”)

I wanted my blurry vision to stop.. I wanted to be able to get into the shower or walk down my hallway without feeling like someone hit me in the head with a baseball bat to the point where I lost sight completely…bracing myself hardly against any steady object I could find in my spinning sight.

I wish I didnt take this option. We’re 2 days in.. Ive got 3 more to go… and then the plan is to put me on Naltrexone..

Let me explain.. This drug (or half of it) is used in ambulances and emergency rooms to bring a patient who has OD’ed on drugs and is unresponsive back to the world. They insert Naracan into the patient’s nose (powdered form) and the patient immediately sobers up… not without withdrawing soon after…

They’ve compounded this drug into a form that blocks nerves at the end of a persons finger tips, and so far have seen improvement in patients who have taken it that have Fibromyalgia. From what I understand: its still sort of something that’s being tested… and one that insurance refuses to pay for.

so…

Goodbye to my extremely rare…. even more extremely rare.. drinking nights with friends… acting stupid and braiding our friendship bond even tighter…I guess, though I feel i haven’t even gotten close to enough of these young days, in which people in their 20’s fill their nights with, God has a different plan for me. Naltrexone will make me violently ill as soon as it hits my sensitive stomach…

Over anyone who has more to lose than I do, Lord, I will take this.

I took tramadol at least 4 times per day, 2 pills at a time. It followed me wherever I went.

I took lyrica when my nerve pain was too much to handle… 50 mg at a time, NOT EVEN ONCE A DAY…

I couldn’t tell you if Im withdrawaling or just in pain that these drugs were prescribed to me to cover up..

but let me tell you,

You dont see my bad days because…

I hide them from you.

I dress in lightly colored clothing and add extra sparkly (light reflective) make up to cover the darkness of my face.

I find reasonable ways to stop and catch my breath while I’m in public. Since I’m not huffing and puffing because of my rib pain, people left and right walk by not knowing for one second that I feel as if the oxygen is leaving my body in every breath and not being replenished quickly enough.

Ive learned the tricks, the ins and the outs, of fooling the world into thinking Im ok….and just for the time Im conversing with you, I may have fooled myself as well.. until the adrenaline fades away after my statement in our conversation and the pain comes flushing up, once again.

The world is so full of sadness, hunger, homelessness, war, politics, religions, and debating.. No one wants to see my sickness. And, sadly, Ive learned very well to hide it.

But just for this post…

Let me unveil.

Let me strip away the smile.

Let me remove my mask and normal limb movements so that you can see…

Chronic illness, invisible illness, ridiculous illness, whatever the term is today.. NEEDS to be taken seriously..

In my world, at this very moment,

my husband lays sleeping from the night shift he worked as a nurse.. the 4th (of 5) night shift this week so that we can live without me, also, having a job, so that we can have insurance to carry me through my doctors appointments.. which have proven to be a job in themselves… so that I can pick up my prescriptions, which cannot be sent to just one pharmacy. (Not every pharmacy carries every medicine, Ive learned…) The pharmacies that I have to go to all in one day to refill my meds (13 prescriptions…and probably counting) could not be spread out further across this city… the spoons (energy, check out “The Spoon Theory”) it takes for me just to enter my car, have the attention span to pay attention to each driver on the road, when I get home, is more than you could fathom.

In my world, at this very moment,

I can hear the sink dripping, my cat chasing a buzzing fly, my air filter turning itself to the highest status, motors outside revving – and then passing the street light..

I can feel my bladder, needing badly to be emptied.. but how many times do I have to disconnect myself from my velcroed heating pad? Priorities tell me heat on my ribs is more important… my ankle snapping from the uncomfortable position its in–IM constantly having to readjust my hips telling me…they’re done sitting in this position, and my internal thermostat is heating up from my heating pad –it’s been too long since Ive forgotten to set the timer to retake my Advil… yes I said Advil… because right now, that’s what I can take as I wait for the “opioids” to clear from my system.

In my world, at this very moment,

I can see, my border collie, passed out in the chair beside me. Every morning I wake up to pain, and I swear she can feel it too. On these days, she’s not interested in playing with her ball or going outside to bark at squirrels in the neighbor’s trees, she worries only of me, ears drawn back, tail held down, and eyes speaking words she wishes she could say.

In my world, at this very moment,

Im exhausted from writing exactly what I feel. You learn to push your feelings down deep because no one in the world wants to hear your troubles.

Please know, and remember, chronic and invisible illness is real. If you chose not to see it, because sometimes it takes a little bit of work to do so, thats ok. But some people do. And thank you, to those some people.. Because I could NOT do this alone.

“I am a question to the world

not an answer to be heard

or a moment thats held in your arms.

And what do you think you’d ever say?

I wont listen anyway..

You don’t know me,

and Ill never be what you want me to be….

….And I want a moment to be real,

Wanna touch things I dont feel.

We want to hold on, and feel I belong.

And how can the world want me to change?

Theyre the ones that stay the same.

They dont know me,

because Im not here..

And you see the things they never see

All you wanted, I can be..

Now you know me, and Im not afraid…

…They cant tell me who to be,

because Im not what they see..

Yeah, the world is still sleeping

while I keep on dreaming for me.

Their words are just whispers and lies

that Ill never believe.

Im still here.

(all quotes from Goo Goo Dolls songs)

✌🏼&💜

Bailey

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