Tag: chronic illness

Poetry

The Ehlers Danlos Syndrome Dance – a poetry jam

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By: JANA GREENE

The foot bone’s connected to the leg bone,

but the joint in between them protests.

“Ankle here,” it says. “And I’m wobbly,

I think perhaps you should rest.”

But no time for that, I say, holding on to my cane.

The leg bone’s connected to the knee.

And to say it fairly,

those knees are barely

even attached to me.

The knee bone’s connected to the thigh bone,

and true, the bone won’t bend,

but where the thigh bone connects to the hip bone,

that socket pops out and back in.

The hipbone’s connected to the backbone

and they don’t really get along.

Where the backbone’s connected to the neck bone,

it doesn’t feel too strong.

And that neckbone connected to the head,

where all my worries are made,

If dem joints dem joints gonna walk around,

I’ll need a mobility aide.

So, strike a Gumby pose with me,

pop and crack in a stance,

for all the ableist world to see

your Ehlers Danlos Syndrome Dance!

chronic illness · ehlers danlos syndrome · Spiritual

Ehlers Danlos Awareness Month – Q & A (Part 1)

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By: JANA GREENE

Hello, Dear Readers,

May is Ehlers Danlos Awareness Month, so I’m … um… spreading awareness. I saw a meme the other day that referred to it as “Bendy B*tch Disease” and I laughed so hard. BBD! But there is a whole lot about living with this condition that isn’t funny in the least.

A few of my friends have had questions recently, and I thought I’d use this platform to educate about Ehlers Danlos Syndrome and its related comorbidities. And y’all can ask me anything, I don’t mind answering questions! (Please keep in mind, this article addresses my own experience with EDS, and it can manifest differently among patients. Please consult your doctor for correct diagnosis and treatment option pertaining to you as an individual.)

Can you develop the syndrome over time?

No. Most of us suffered for years – sometimes decades – without a correct diagnosis because symptoms can seem obscure. And the medical community tends to think of horses when they hear “hoofbeats” (i.e. causes of injuries and illness,) and not zebras. Which is why the “mascot” for this condition is the zebra. It is 100% genetic. You cannot ‘catch’ it, develop it (although you can develop more obvious symptoms,) or “cause” it in any way, shape, or form. We are born with it. Genetic and clinical testing is often required for accurate diagnosis (do a search for the “Beighton Score” for further explanation.)

Can holistic approaches cure Ehlers Danlos Syndrome?

No. Although I do love holistic remedies and believe in their helpfulness in many ways (and I try to treat my overall health with eating clean when I can,) the truth is that I require many Rx medications every day. Each one has proven itself necessary, as I have tried at different times to stop most of them at one time or another, with disastrous, sometimes life-threatening consequences. So, I’m a big fan of natural medicine, but a bigger fan of survival. I hate that Big Pharma is a big part of that survival, but it is what it is. Part of my constatation of illnesses show up in that my body cannot do the things your body does automatically. My unmedicated body cannot control my blood pressure, temperature regulation, heart rate, or digestion – as I have gastroparesis, which is paralysis of the entire digestive tract, which is why I’ve lost 50 pounds in a short span of time, and why I’m malnourished (which causes even more symptoms and pain. it’s an awful cycle.)

What do you use for pain management?

Ice packs. Voltron. Tiger Balm. And tears. Oftentimes, the course of pain management for my condition and the severity of it, can be opioids. That’s how brutal the pain can be. I have seen pain management doctors, who put me on CBD oil because other than opiods, there are not too many meds I can add to my already-vast Rx repitoire without complicated side effects. I’m glad CBD works so well for some folks, but it may have well been snake oil for me. I cannot (rather, will not) take opioids, as I am a recovering alcoholic with 22 years sobriety and taking opioids would be extremely risky for me, addiction-wise. I do take cannabis gummies – and honestly, because I take the totally legal kind, they help but only so much. I long for the day cannabis is legalized so I can achieve better pain relief. Truly, people, it’s medicine God himself planted in the dern ground. Its medicinal properties are scientifically proven. So, legalize in it my state already. Okay, off my soapbox.

How come you dislocate and subluxate your joints all the time? Because I’m a super-athlete. JUST KIDDING! Because completing everyday tasks can be like running a triathlon for a healthy person. We tire easily. Subluxations are just partial dislocations of joints – mild or incomplete dislocations. And they happen all the time. Every day, something on my body subluxes; it’s just part of my reality. Our ribs can sublux due to coughing or sneezing. Barfing is the worst for subluxing ribs. My left thumb shifts out of joint at least twice a day. Braces – elbow, wrist, knee, ankle – you name it – are a part of our everyday existence. Every morning I take a “pain inventory” to help me know what needs to be braced for the day. I have a vast collection of braces for my joints and it’s a rare day I don’t need any at all. Speaking of EDS stability paraphernalia….

Why do you use a cane sometimes and other times, you do not? Because some days we “flare” worse than others, and also because many of us also have Postural orthostatic tachycardia syndrome (POTS), which causes dizziness, and a cane is a good stability aide on unstable days. There are days I don’t use my cane at all, and there are days I can’t walk to the kitchen without it. This will, unfortunately, worsen as I get older, and as my joints become less stable as well. That’s the bugger about this condition – we will not improve as our bodies age. Wear and tear on the joints from everyday life will become more prominent. (PS: It’s an unfair assessment to pass judgement on someone who uses a mobility aide only on “bad” days. One day, we need help getting around, and another, we can walk upright unaided.)

Have you tried yoga?

*Rubs temples*. Yes, I have. Ended up subluxing my hip. Different patients have different opinions on yoga- from what I’ve experienced and been told, is terrible for people with my type of EDS (Hypermobility Type III) because our joints are already ridiculously loose and stretchy. Bending them more in those positions only increased my pain and caused damage. Our joints are too lax already.

What is a “flare” and why are some days worse than others?

According to that Big ‘Ol Brain in the Sky – Google – it is explained thus: “The term “flare” can mean several things, but could be increased pain, GI distress, MCAS reactions, dislocations, subluxations, cardiovascular challenges, dysautonomia symptoms, insomnia, fatigue, brain fog, a sense of being “wiggly” or dangerously clumsy and more.” And easier way to think of it that my dashboard lights go off at once. ALL SYSTEMS are “off.” Flares can result from being sick (with a virus or other, and that’s constant, as I also have a degree of immune dysfunction,) being over-tired, pushing past my limits, or not sleeping, eating gluten, and about 50 other possibilities.. Flares are miserable beyond words, and you feel like you will never feel decent again. EVERY time, so severe flares are also pretty good at triggering depression. On our “good” days, it is natural to want to do ALLTHETHINGS, because we never know when our pain will be manageable again. So, we push past what we should, often resulting in – you guessed it – another flare. Supremely frustrating.

Have you consider EDS may be caused by childhood trauma?

I believe the mind, body, soul connection is imperative to consider. But to me, this, to me, is an old spinoff on the question: “Is it all in your head?” Although I do have significant childhood trauma, Ehlers Danlos has zero to do with it – other than the fact that I was constantly injuring myself doing the simplest things as a child and was considered “clumsy,” not having had any idea what was wrong with me. Also, the emotional days can contribute to overall flares, just like any other trigger. I have – thank God – worked on my trauma through several years of therapy, and I will probably go to therapy for the rest of my life. I will goto therapy forever -not because of the trauma – but because my therapist gives me tools to deal with the fact that I am losing mobility slowly, must deal with awful pain on the regular, and not being able to do the things you want/need is depressing, frankly. My therapist imbues me with hope, coping skills, and encouragement. I am not going to get “better,” (barring any unforeseen miraculous new treatments which may come along due to increased research, which is why I am spreading awareness. Here’s hoping!)

In conclusion, thank you for asking questions, my friends. I will answer them as best I can! Ehlers Danlos Syndrome is a spectrum just as many conditions present. Some people with it lead normal lives and just experience a little pain here and there. But for some of us, it’s debilitating and progressive. And we need the compassion and understanding to thrive through chronic illness and pain.

Blessed be, Readers. Til’ next time,

Jana

Spiritual

The Sisterhood of Self-Actualization

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By: JANA GREENE

Look at you, in the here and now!

Look how far you’ve come.

When you were a child, you weren’t allowed to exist as that very basic thing – a child. And so you didn’t know how to play without furrowed brows and anxiety for the longest time.

Look at you now, playful and free, laughing at the most juvenile humor imaginable. Look at you doing things just for the sake of FUN!

And sweet friend, I know you have suffered life-altering trauma and faced circumstances so devastating, you would have deemed it unsurvivable, had you known it was coming.

You thought, “well, I’d never be able to survive that – anything but THAT – God forbid it ever happened!”

But God didn’t forbid it.

And you’re still standing.

Remember when you let other people define you? A lifetime of stuffing your own feelings out of reverence for the OTHER person? As if you deserve no reverence for yourself?

Sisters, the Universe reveres you; surely you can do the same. Surely you can find that your worth is equal to the ones you make feel worthy.

Your own definition of you is the only opinion that matters in the least. Isn’t that ironic?

For a while, you were bitter; an undercurrent of constant anger running in the background of your ether, which is MOST “un-ladylike” of you.

Patriarchal pish-posh, I say.

Look at you now, with an open heart so cavernous as to swallow up the whole broken world into a wild love, and spit out the bitterness. You’re slaying it like a freaking LADY, and a badass one at that.

They tried to hijack your newfound happiness because misery loves company and you’ve SO over the weeping and gnashing of teeth bit. That’s hard for miserable people to accept – that you have the audacity to let things go.

Yes, now here you are. Has anyone bothered to read you the scoresheet?

You have made it through 100% of the heartbreaks, rejections, and tragedies you have EVER experienced.” That takes some doin’!

You are part of a mighty Sisterhood! Link arms with me and let’s meander through this crazy world together – a place of radical silliness, a penchant for overcoming, and self-acceptance.

Look at you in the here and now!

Look how far you’ve come!

And growth looks beautiful on you, my friend. ❤️

ehlers danlos syndrome · Spiritual

Order UP! (At the Ehlers Danlos Cafe)

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By: JANA GREENE

SERVER: “Welcome to the Ehlers Danlos Syndrome Cafe. My name is Susan and I’ll be taking care of you today. Have you been here before?”

ME: “Hi, Susan. Yes. I come here every single day. I’ll have the Low-Pain Day, with and some type of actual Energy as my side. Please leave off the Crushing Exhaustion and add a side of Gratitude.”

SERVER: “Well, that’s great you want to try the Gratitude! It’s my personal favorite. Hold up;.let me check with the kitchen. * Checks with kitchen. * “Sorry, we sold out of that a while back.”

ME: “Fine. Let’s see…I’ll take some Good Rest as an appetizer…”

SERVER: “We’re out…supply chain demands and whatnot.”

ME: “Right. Supply chain issues.”

SERVER: Let me tell you about our specials! We have plenty of Fresh Pain – just got it in! It comes topped with some Sauce of Fustration, over a bed of WTF NOT THIS AGAIN.”

ME: “Um, no thank you?”

SERVER: “Our Shoulder Sh*t Show entree is really a main event. It includes an ingredient so spicy, you’ll want to pull your arms completely out of the sockets and jump into an active volcano. Holy rotator cuff, Batman!”

ME: “Um, I kind of already do want to jump into an active volcano,…”

SERVER: “Or if you’d like the milder dish, order the T-Rex Special will make you function all day long with tiny little T-Rex arms because your elbows and wrists are hyperextending. Oh, and it’s served with a nice Thumb Dislocation Reduction.”

ME: “This restaurant sucks.”

SERVER: “We also have nice Gravel Knee Supreme as well, a slightly piquant exquisite pain with every step you take, and a knee joint that bends so far backward, you’ll look like the Rubber Band Man, and sounds like 1000 Hummers driving down a gravel road.”

ME: “Hard pass.”

SERVER: “Our last special is a SAMPLER! Shoulder, Knee, AND Hip Subluxations, so that whether you’re standing or sitting (or walking or laying down,) there is 100% guarantee, it ‘gon HURT like a MoFo.”.

ME: “Lick Rust.”

SERVER: “WHOA! No need to get snappy.”

ME: “Listen… all I really want to do is have a good day. I guess I’ll just take an order of Wasting the Whole Day in Bed Like the Granddad in Willie Wonka.”

SERVER: “Do you want guilt sprinkles?”

ME: “What??”

SERVER: “Do you want to feel guilty for not getting out of bed all day?”

ME: “No, not particularly.”

SERVER: “Guilt sprinkles it is! You also get two sides.”

ME: “Okay well then, for my first side, NO Barfing today. And don’t bring out the Slipped Ribs from throwing up. I don’t even want them on a separate plate. I’ve had it every day this week.”

SERVER: “We are outta ‘Not Barfing. Maybe tomorrow.”

ME: “Can I just order a Decent ATTITUDE, then?”

SERVER: “We don’t serve that here. You have to bring your own.…the attitude.”

ME: “Eat glass.”

SERVER: “just for being so sassy, how ‘bout a Blinding Migraine? It’s a 2-fer on sale this week.”

ME: “Kindly bugger off.”

SERVER: “We have a nice Vintage Dizzy Spell? You usually have at least one every day, and you can get it to go.”

ME: “Get bent. Can I cancel my order altogether?”

SERVER: “Oof I’m sorry, it’s already been put in at the kitchen.”

ME: “When did that happen? I just got here!”

SERVER: “Looks like … let me see….January 24, 1969.”

ME: “Doesn’t sound like you use very fresh ingredients…”

SERVER: “Yeah, we only use the stalest ingredients for maximum creakiness, immune function overreaction, and gourmet pain. We have the largest variety of pain sensations in all the world!”

ME: “How proud you must be.”

SERVER: “Will we be chasing our sorrows, er…um, I mean MEAL with a beverage today? Perhaps a margarita?”

ME: * blinks incredulously * “I’m an alcoholic in recovery, so no thanks.”

SERVER: “Wow, that’s unfortunate. A nice Chardonnay would probably ease the pain,”

ME: “Get thee behind me Satan”

SERVER: “It’s SUSAN.”

Me: “Whatever. Just bring me some medical cannabis and a Topo Chico, please.”

SERVER: “How about a nice anxiety spiral for dessert?’

ME: &%$#@! off. &%$#@! ALL the way off, ENTIRELY.

Spiritual

When you feel like a “Lovey,” Remember you are Loved

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By: JANA GREENE

When my second daughter was born, I wore a very lightweight sea foam green bathrobe at the hospital. I think I had bought it from Walmart. It had a soft lace around the edges, which were soothing for her to feel when she was nervous. It was inherently nothing special, but she glommed onto it, and it quickly became her security blanket. We called it “Lovey.”

She still has Lovey. She is 30 years old now, and throughout the years, Lovey is about the only thing that conveyed in all of her moves. I believe she still might sleep with it.

Much like the Velveteen Rabbit, Lovey became a shred of a thing. It had been snuggled, cried on, donned as a costume, barfed on, and worn as a turban, her whole life. It has shrunk from tumbles in the dryer. Like the Velveteen Rabbit of lore, Lovey became puny with wear, shredded by love.

As a chronic illness and pain patient, I feel a little like Lovey these days. I don’t feel identifiable as who I issued to be.

When I leave this world, I will leave it with my body in shreds. My hope is to be softer than when I came, ego shrunk from tumbles. My purpose only to love and be loved.

I feel shredded lately. My pain levels have been monumental. It’s almost more than I can bear, to be honest.

The trick is, I think, to realize that sickness is not the only thing shredding me. My joints – all 360 of them in the human body – are essentially being held together with silly putty instead of Gorilla Glue. My Earth Suit makes faulty collagen. Everything hurts, almost all the time.

When I feel leveled by the pain, I need to be mindful that illness isn’t my only leveler. I’m also being loved, and I know that. I’m very grateful.

All of us Loveys – tattered, worn, and threadbare – have to remember that we don’t lose our value as we experience the transition from being something the world recognizes and can easily determine the function of, to something whose purpose might not look as obvious.

See, my daughter’s lovey had only become more valuable to her. The fact that an old robe can find new life as something completely different is oddly comforting. It meant the difference between being an article of mom’s clothing, and becoming a beloved “friend.” It meant the difference between the Goodwill basket, and an honored place on her pillow.

So maybe I’m not breaking. Maybe I’m becoming. And in this season of great difficulty, I choose to believe the latter. I have to hold on to hope.

Puny from wear, shredded with love.

God bless us, every one.

chronic illness · Spiritual

EDS – When Pain is the Order of the Day

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By: JANA GREENE

Hello, dear readers.

The past week has been a pain-fest. There have been times I’ve just laughed hysterically at the notion that I’m supposed to live day in and day out in this level of pain. Ha!! I mean REALLY??
So I write about it, because it’s the ONLY way I can deal with any of it. Thank God journaling is an outlet.
The truth is that I am slowly losing my mobility, and in awful pain while doing it.
This is life with Ehlers Danlos.
This morning, I subluxed my thumb out of joint, picking up a stack of papers. I bent down to clean litter boxes and the pain in my “good” knee brought me to tears. I waved at someone the other day and had to ice my freaking shoulder that night. It’s not just big movements that cause injury anymore. I can dislocate fingers opening a jar. I can’t hang laundry in the closet anymore because I have to reach too high to hang Bob’s shirts. Stairs are murder on my hips and knees. I AM ONLY 53 YEARS OLD.
I am really starting to feel by body slipping. I no longer have “a good knee” or “a good shoulder.” The mutated collagen holds my joints together is getting more lax. My skin is getting stretchier by the day because it doesn’t have proper collagen to hold it together. Falling asleep is excruciating because no matter how I lay, there’s pressure. Pain wakes me up from my sleep.
When my husband hugs me, I frequently ask him to hold me tighter so that it feels like my shoulders aren’t coming out of the sockets. I wake up and decide what I need to brace for the day – I have a “wall of braces” in my closet. I hadn’t had to use my cane since I lost the 40 lbs, but I’m having to use it again. One day I’ll need a wheelchair. Normally, I bitch about these things and move on, but it hasn’t subsided long enough for me to take a breather between flares lately. This of course this takes a toll on the whole family. Then guilt kicks in. Lather, rinse, repeat.
My Instagram and TikTok handles are “unbreakableJBG,” because I may be fragile, but this won’t break me. Oh hell no. I’m too damn stubborn. (But please pray for me, if you think of it.) ❤️

Depression · Spiritual

Taking a mental Health Day (to sleep, to meditate, to wallow in my feelings, and cry until I’m 10% snot and tears)

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By: JANA GREENE

Taking a mental health day today.

Slept shitty last night.

The whole world is on fire.

My gastroperesis is flaring so hard I’m barely able to keep any food down. This throws other medical issues into a hellish spiral.

My chronic pain has been ridiculous.

We have very difficult things to deal with in the family right now. Really hard things.

I’ve cried several times today, which is no small feat when you’re on antidepressants. It felt awful to cry, and then really good…cleansing.

And it seems a counter-intuitive measure to wallow around in pain and sadness, but every once in a while, you need a good wallow.

Today I will cry, and rest, and bitch about my woes to my ever-patient husband.

I will likely beat myself up for having to cancel plans with friends, and hate myself for feeling melancholy.

I will feel like I am not handling life well AT ALL. (While reminding myself that despite it all, knowing I’m doing my very best.)

At some point, to be transparent, I will feel guilty for even having this little nervy-B, guilty for unloading on my husband, and guilty for having the audacity to complain about this life, when I am truly blessed in so many ways.

I’m pretty sure I’m not done crying today. God, I hope not. There’s a long line of tears queued up in my spirit that need to be purged.

I hope that tomorrow, by some measured miracle, the world on fire won’t seem quite so much like utter doom.

Today I will wallow. I’ll sleep and watch Schitt’s Creek (it’s a balm to my soul), and talk with God about WHAT IS THE DEAL WITH MY LIFE RIGHT NOW. And I’ll look forward to better days.

Because they are always on the way, you know – better ones.

I’ll keep hanging on if you will, Dear Reader. ❤️

Chronic Ilness · Spiritual

Doing Better / Getting Better with Intention

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BY: JANA GREENE

Many of you know I struggle with multiple illnesses that can be very debilitating. I know there are some of you going through similar things.

I truly live one day at a time, but for the first time in a minute, I am feeling hopeful about the things I CAN do that are in my power. It’s time to step up my game. Instead of fighting just to survive, I’d like to fight to be as healthy as I can be.

Several really good things are coming up and I want to be at my best. GOOD THINGS. Some travel. Some reconnecting with people I love. It’s very easy to fall into defeatist thinking, but I need to re-center and here’s how I plan to go about it. Sometimes I need a plan!

  1. Today I’m meeting with a nutritionist to find out everything I can do for the gastroperesis. That’s going to mean yet MORE changes. Although I’ve lost a lot of weight, it’s not the healthy way. I must absolutely be better about keeping my diabetes in check as well. I have to eat cleaner, which is hard because dammit, I reward myself with food – the head game relationship I have with it is LOADED, man.
  2. Today, I make time for daily physical therapy (at home) to minimize my dislocations and injuries. There will always be injuries and mobility issues, but I have to do better. The last thing you feel like doing in pain is the exercises, but I have to push through to help keep he musculature strong to support each joint.
  3. Today I will rest when my body says to rest. It’s also difficult with a genetically deficient immune system because I get sick often. My kidneys are not in good shape, although my last labs indicate they haven’t failed further recently. That is what we call a “praise report” right there.
  4. Today I will make time to get quiet and still, because I suck at stillness but my spirit needs it. I will make time to show gratitude deliberately. I will be thankful for all the ways I’m blessed, but I will also be thankful “in advance” of getting healthier, BELIEVING for it. (Y’all remind me I said this later when I get discouraged.)
  5. I will manage my pain as need be, realizing pain management is self care. This is sometimes difficult because I can no longer take Advil or Alieve, or any other anti-inflammatory; which is unfortunate because my conditions are inflammatory. (God, I do miss Advil something awful.

And here’s where I run into trouble: I just have to do all of THIS every single day. That’s overwhelming!

I need to run my health like I run my alcoholism recovery – one single day at a time. Don’t consider “forever,” just do one single good and loving thing towards my body and soul at a time. Just one thing. Then another. I’ll handle tomorrow TOMORROW.

Life is tough but I’m pretty scrappy. I have a lot to learn and a long way to go. But today I start trying to do so with purpose, because I’m not going through all of this just to add more sick years to my life, but to ENJOY this juicy life.

God bless us al.

Christmas · Depression · Spiritual

A Case of the “Christmas Sads”

Jana Greene2 Comments

By: JANA GREENE

I am an emotional wreck lately.
Just really rather unhinged.
Thinking about the fragmentation of my family of origin, and how necessary estrangements still suck, even if for the sake of boundaries.
On the one hand, it’s Christmas, the Holly-jolliest season of all. I flippin’ love everything about it.
On the other hand, losses that are usually manageable seem like big, emotional gaping canyons.
My mind keeps “going there,” but I’m trying to go ahead and feel my feelings, rather than eating them, spending them, or smooshing them down and down. Smooshed feelings manifest in nasty ways and I’ve been in therapy too damn long to smoosh emotions down.
I have cried more in the past few days than the entire year prior combined. Fat waves of sadness knock me on my keister several times a day.
But I don’t want to be sad at all. I want to bliss out over all the sparkling, warm Christmasness, and enjoy all that I have NOT lost. And there is a whole lot to be grateful for.
It’s just a tough season. Writing about it (and consequently, I guess, “oversharing” it) helps me cope.
With pain, physical and otherwise.
With feeling alone.
With purging it with words.
Whether you’re missing someone, grieving a loss, hurting, or alone … I’m sending you huge hugs.
God bless us all.

love · Spiritual

The Messy, Glorious Business of LOVE

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BY: JANA GREENE

Love is the singular thing, and absolutely everything, all at once.
All are in it and of it, imbued with this remedy.
It is the answer to whatever ails your heart.
Love is all that lives on after our Earth Suits fail.
It is fed and starved by a thousand moods, yet always nourishes.
Love lands in its feet.
It’s the only thing we were legit created to experience.
Love is like sacred oil – fragrant and dousing and scandalously generous. It leaves a film on you all of your days, and everyone in your world gets a little “oily” when you touch their lives. (Touch them lots!)
Love pisses people off when it is believed undeserved, when really people are under-served by it.
It breaks the economy of deficit, as its endless.
But even though it’s free, people seem to like hoarding it. Many enjoy rationing it, as if there was a finite supply.
As if it originated for us, by us.
As if we weren’t given it in order to pass it on.
Love is a Being.
And a Doing.
It’s an action and a sacrifice.
The feet of Love can walk through fire to get to another hurting soul, and strike up a dance to celebrate itself.
Love has wings to fly us to a place of acceptance, and roller skates with which to flee from hate in all its forms.
It’s the only thing that will ever make a dent in suffering, and the ultimate remedy for pain.
Love is all we take with us.
Spread that stuff around copiously.
God loves you and so do I. ❤️

ehlers danlos syndrome · Spiritual

Ehlers Danlos – The Syndrome That Kept Everyone Guessing

Jana Greene1 Comment

BY: JANA GREENE

It’s (still) Ehlers Danlos Awareness Month. I thought I would share some interesting things from growing up with it undiagnosed, in letter format, from the prospective of what I know now:

  • Dear Kindergarten-2nd grade teachers: We have been trying to correct the way I hold my pencil for a couple of years now. There’s nothing wrong with my handwriting – I just hold my pencil with pretzel fingers overlapped because that’s what feels natural and comfortable. Please stop trying to make “holding the pencil correctly” happen. It’s never gonna happen.

  • Dear OBs: There’s a reason why I keep going into preterm labor. It’s called “incompetent cervix” and is pretty much what it sounds like. I don’t have enough collagen to stabilize my womb. My babies will come FAST, and with life-threatening complications for me and them. Both of my babies had to be resuscitated at birth and I nearly died, both times. Knowing what was wrong with my body may have helped me have safer pregnancies.

  • Dear PE Teachers (every single last one of you…): I’m not faking the sprains and dislocations. I’m not sure how one would “fake” a dislocation, as you can clearly see my shoulder rolled in an awkward, unnatural position. Nothing like being forced to run the mile on the track when your hip has subluxed out of place! And also….When my mom writes me notes excusing me from PE, it’s because I get injured incredibly easy and I AM IN PAIN. Not “owie” pain….No. We are talking grown-ass man-would-cry PAIN. No, I don’t care about your class, because I dread EVERY morning having to participate in things that hurt me, and hurt me badly. I admit to having a bit of a disdain for PE teachers. Between getting yelled at because of injuries and given “F’s” in class, I’m not a fan.

  • Dear Fitness People: It’s not normal for my heart-rate to go up to 200 on moderate exercise. Being pushed to work harder and go faster is a recipe for disaster. I pass out. Everyone cannot do what you can do.

  • Dear Childhood friends: I cannot hold my fork like you do – it’s not bad manners, I promise. It’s the only way I can keep a grip on my fork.

  • Dear Healthcare workers: Just because you are not familiar with a syndrome or disease doesn’t mean it doesn’t exist or isn’t profound. That is why me – and those like me – are so determined to spread awareness. People don’t know. People need to know.

  • Dear “Every Doctor I saw before I was 40”: Please do not hastily slap the “fibromyalgia” label on every sick person. While it is a very real thing, other illnesses can masquerade for it – conditions that require treatments. It took me almost 20 years to get a correct diagnosis.

EVERY SINGLE THING I experienced health-wise my whole life makes SENSE since the diagnosis. By the time I met Bob, I was at the END of my rope. I wasn’t sure what was happening to me, and half the doctors insinuated I was just crazy, which adds insult to injury. Please, doctors…PLEASE. Listen to your patients and pay attention to the symptoms.

If I still had no idea what was wrong with me, I don’t know where I’d be, ya’ll.

Because after decades of your shit dislocating and experiencing debilitating fatigue and repeated injuries, stroke-level blood pressure, a crappy immune system that refuses to cooperate consistently, horrible migraines that take you down for days…..you lose hope.

I was absolutely losing hope, and honestly, it made me want to drink. I only came out of this thing with sobriety intact because of the love of my good husband and the care of an incredible doctor.

At least I know what’s happening when I sublux or dislocate, or experience high pain. I am so fortunate to know, so that I know how to best deal with my chronic illness.

I wish the same for every person with a chronic illness.

We deserve no less.

Prayer · Spiritual

Why I Sometimes Hesitate to Ask for Prayer

Jana Greene7 Comments

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By: Jana Greene

The great Anne Lamott likes to say that her two favorite prayers are “help, help, help,” and “thank you, thank you, thank you.” And I agree that those are perfectly adequate, perfectly reasonable prayers. They are also the only ones we can voice at times.

It’s one of those days.

The kind of day where general malaise is completely overwhelming. When I’m trying to mentally work out a few personal situations, and meeting with COMPLETE overwhemled-ness on every front.

I started to post a prayer request this morning on my Facebook page to ask my long-suffering friends to please pray for me, because I’m having a day of consecutive panic attacks and wrenching pain, but stopped myself because HOLY SHIT, I don’t even know where to start.

What am I even asking people to pray FOR? Everything is kind of running together. Where does one issue start and other stop?

I feel like I need a special IRS- type  form letter for listing out all the things that my spirit, mental health, and clunker of a body need attention for. Like, maybe I need to itemize or something. It’s our tendency to like to identify and specifically pray for things as if they were itemize-able, isn’t it?

I don’t want to be that one asshole who is always asking for prayer for the same damn issue over and over, for years and years. That is a MAJOR bummer to everyone involved in trying to “pray me better.”

But sometimes our anxieties and depression and needs and concerns all like of get stuck together like a yucky wad of Life Goo. A big, heavy, sticky, ball of slime that started at the top of the hill as ONE thing, but has slowly rolled downhill and is swallowing every piece of  absolute rubbish, until you can’t tell what it’s made of at all.  It’s just a ball of chaos, worry, crushing depression, hopelessness.

And too heavy to lift at all.

So essentially, I am coming before God this morning with my unwieldy, completely nonsensical ball of Life Goo, and petitioning him to chuck it into a black hole, or at the very least, help me carry it. Or at the very VERY least, TELL ME HOW TO HANDLE IT. Because there is no worse feeling than being so overwhelmed, you cannot function.

My current physical health, which is thus: I have been in pain every day – to some degree – since 2008. Needless to say, Christian hard-liners get sick and tired of praying for me because everyone (including me) loves a good “before and after” story.

And although I get respites, there is no permanent “after.” That’s the “chronic” part of “chronic illness.”

And what else do I need prayer for? Here’s a synopsis, very over-simplified.

I’m not doing so well financially, as I cannot work outside the home right now. I need a job from home, or to get approved for disability, or find out I have a very rich old relative somewhere out there who wants to make me benefactor (c’mom, 23 and Me, step up to the plate already….don’t I have any rich third cousins once removed???) For the record, ALL of these possibilities give me anxiety on top of existing anxiety.

I lose sleep every night worrying about my children. All of them.

I’m afraid I’ll lose the mobility I have and thus lose so many of the things I still can do and enjoy doing.

I worry that I’ll get worse and worse until I can’t handle living like this anymore. I’m just being honest. What if self-care for days like this of eating pizza, listening to music, talking to God, writing, painting, spending time with friends….what is none of these healthy coping strategies (except for pizza…..which isn’t healthy but is good for the SOUL) doesn’t cut it anymore. What if I get to the point where I can’t laugh about things, and find that incorporating humor into my “wellness” (or “just don’t die-ness”) plan isn’t helping anymore.

What if I start to drag my family and friends down with me? I HATE the way my illness effects everyone.  I guess  I’ll be all alone forever. (SEE? That strategy is called “SPIRALING” and I’m quite good at it, if I do say so myself…)

I need to feel like the Living God isn’t “punishing me” with sickness (yes, I’ve come a long way in the Grace Gospel and no longer agree that God is “punishing” me, although that fundamentalist stuff runs DEEP and every one in a while rears it’s ugly evangelical head.)

I’m afraid that all my best work – my writing, my art, my poetry – is over and I’m passt my prime, destined to crank out crappy words, and paintings, and concepts, and all other manifestations of creativity. I fear that I’ve peaked.

I’m afraid My Beloved will tire of my constant illness and chronic pain, and will want to find a more healthy (and less neurotic) specimen with which to share his wonderful life with.

If there are any disastrous outcomes to ANY situation, I will find and assume it is coming to pass when I’m in this mental state. And I don’t WANT to be that way. I want to be a fount of hope that springs eternal. I just don’t have it in me today.

What people may not understand is that even if you pray for me and I don’t “get well,” it is the wellness of my spirit that gets renewed when you pray for me. When we pray for each other. God is not a genie in a bottle. Sometimes the healing we get doesn’t look like what the world thinks it should. It doesn’t mean that your prayers are not the sole and entire reason why I get up another day to fight. Sometimes that’s ALL that gives me that courage.

So, friends? If you’re the praying type, please petition Heaven to send me HELP, HELP, HELP. For what I’ve requested prayer for. And for every other issue that’s part of the ball of Life Goo that keeps rolling downhill.

And you guys? THANK YOU, THANK YOU, THANK YOU.

I love and appreciate each one of you, readers. Thanks for taking the time to read my blog, as always, and God bless us, every one.

 

 

 

Acceptance · blogging · Brokenness · Christian writers · Christianity · chronic illness · Depression · Enough · God · God · Healing · Hope · Inspirational · Spiritual

Faith Reconstructed (or, I think I’m ready to write again…)

Jana Greene4 Comments

black and red typewriter
Photo by Suzy Hazelwood on Pexels.com

By: Jana Greene

Hi, my name is Jana and I’m a writer.

Sometimes, I forget that.

I used to write quite prolifically, and about everything.

As a matter of fact, this is the 475th blog post on The Beggar’s Bakery.

Sometime in the past few years, I’ve misplaced my writing mojo, which is to say that I’ve slipped into committing the cardinal sin of true creativity, which is to worry more about what people might think of me than to have confidence in what I have to say.

I think I started writing less when a series of unfortunate events took place, namely the catalyst for me to question, test, and try the faith that I’d inherited from my ancestors and never outwardly doubted.

It started when I got sick, and stayed sick. It started when well-meaning churchy people attempted to cast demons out of me (no, really) that weren’t really demons, but infirmary. The thing about sickness is that it is actually more threatening than demons to religious people, of whom I was chief amongst. After endless rounds of being prayed for, having “deliverance” ministries, and demon casting, well… it turns out that my illness is genetic, and while God CAN and DOES heal instantly, that was not the case for me, which led me to one of two conclusions:

1. I was doing something wrong and was a fundamentally flawed Christian. Or

2. God isn’t real. Healing isn’t real. My life is based on lies.

Now, I’m all about that –  laying on hands and praying in Jesus name. That is GOOD STUFF. We should always aspire to heal one another. We should always ask for our own healing and petition God to heal others. It’s just that when it doesn’t happen the way our religious leaders aspire it to, it leaves us in a spiritual lurch.

A few funny things happened on my way to figuring out that neither of those conclusions are true. It’s kind of a long story, and I’ve taken to the blog to tell it piecemeal, as best I can, whether anyone reads it or not. For a long time, this blog was my sanctuary, where I came to be raw and real. Then I underwent this huge physical and spiritual metamorphosis, and I wasn’t the chipper writer with a fast answer and scripture reference to throw out there anymore.

And I stopped writing here because that little Southern baptist girl inside told me that I had NO right to pen a blog that claims to be “one beggar telling another where she found bread,” because I am not a conventional evangelical anymore. Sickness changed me, yes. But the spiritual angle changed for me in ways I can scarcely count. What if So-and-So thinks I’m a big, fat heathen because I ascribe to this hippy-dippy, love one another craziness that has taken the place of my rigid, religious persona?

I guess that’s what they’ll think, then.

God and I are square, more than ever.

There was a time that I was sure my calling was to be a mom. And then my kids grew up; they still need me, but in a different way. I was sure I was called to be an artist, and poet, and for a season, I was. For many years, I thought my calling was to minister to recovering alcoholics, and that is still true. Those things will always be parts of my mission.

But here’s what nobody warns you about: Our “callings” change. They morph. We are always called to something new because Papa LOVES opening our eyes to the NEW!

So I guess for the foreseeable future, The Beggar’s Bakery will again be sanctuary for my words. Because I badly need to get these feelings out, and why not bring along 1,940 of my closest friends with me?

It isn’t a pretty journey.

It isn’t even a COMPLETE journey.

Just a leg of the trip, replete with all the joy, angst, confusion, acceptance, and hope I can muster and share with my readers.

This revival is for the doubters. It’s for the broken-hearted, and the disenchanted. It’s for those who always feel that they fall short of the glory of God, and the expectations of men. It’s for the marginalized and the giver-upper. It’s for the real people, the ones trying to figure out and complicate what is really, really simple – that God is Love itself and YOU are an expression of that love to the entire universe.

I’m still struggling with a lot, so don’t look to me to feed you in whole – to hand you the Bread of Life – the truths, mysteries, and answers. But I CAN tell you where to find that bread still. The Bakery is open – loaves and fishes for all.

It’s all love.

Til’ tomorrow….

 

chronic illness · Spiritual

Sisterhood of Solidarity – Chronic Illness and that B*tch, Depression

Jana Greene2 Comments

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By: Jana Greene

Greetings to the 1,950 people STILL with me here at the BB, I cannot tell you how much I appreciate and love my dear readers. ❤ I guess I should start this post with a disclaimer:

Warning – this is not a happy, shiny, churchy article.

It does not “glorify the lord,” necessarily. (Although I’m of the mind that God will be glorified in EVERYTHING in it’s time…)

Also – and let’s just get this out of the way – I have salty language. I’d like to say I’m working on it, but I’m trying to be transparent, and it’s actually the least of my damn worries.

Please don’t tell me how I’m already healed by the stripes of Jesus.

Please don’t insist I pull myself up by the bootstraps.

Please don’t tell me I am…

(1) under demonic oppression (been there, got that T-shirt…),

(2) not trusting God (because when someone is hurting, making them question their faith is always helpful,) Or…

(3) need to try an essential oil / nutritional shake (although it tickles me that the same issue can be considered “treated” by demon expulsion OR Plexus! Whichever!)  ¯\_(ツ)_/¯

I believe the last time I posted, I resolved to write a post every single day for a while, which was vintage me – setting up expectations I will never fulfill. I’m wicked good at writing emotional checks that my mind can’t cash.

Today I decided to write because I find myself in more solidarity with my depression than with my fellow sisters who are also fighting the good fight. I’m not sure what anxiety and depression feel like to you, but here’s my breakdown:

A sense of DOOM. Doom. Doom, dooooooom.

It also feels like:

Nothing is going to work out.

I’ll always be in physical pain.

I’ll probably always struggle.

But sometimes, you just have to get sassy back.

Sometimes, you just need to call a bitch out, and this bitch is DEPRESSION.

It has taken literal YEARS to receive the correct diagnoses-es, fight with God about the ensuing bitterness, and come to an acceptance.

Usually, I am pretty freaking accepting and have figured out a million work-arounds to deal with life.

“Doom mind” isn’t the most most Christian-ese terminology. Even admitting that I still struggle with it still feels janky, because being vulnerable is hard. Aren’t we supposed to play OPTIMISTIC, HEALTHY, and LIGHT-HEARTED?

The thing is, I’m not sure Christians are doing the hurting world any favors by wearing these stupid masks. I don’t think Jesus judges depressed people for being depressed. It doesn’t licit his anger, but his compassion. That much I DO know.

I am a pretty happy person, generally. I LOVE life.

I absolutely LOVE to laugh. I’m creative. I love hard. I don’t want to be sad.

Usually, it’s just easier for everyone for me to fake being okay.

Dry that tear.

Minimize that limp.

Ignore the anxiety attack.

Get out of those pajamas.

Apologize for being depressed – I have so much to be grateful for!

But some days, I can’t muster putting on a happy face.

Life is different now. Not always “bad,” but always “different.”

Mobility aids are not sexy. Prescriptions are not cheap. And you can only watch so many episodes of 90 Day Fiance without losing your ever-loving mind.

I’m hurting too bad to walk, just less climb mountains. My creativity feels shriveled up like it will NEVER return. I watch a thousand funny cat videos, but can’t rally with laughter.

It comes. It goes.

I’m doing my best.

And I’m supposed to do it without picking up a drink!

I don’t know how my friends remain supportive, and I appreciate them so much. But I also lay low sometimes especially with the good friends. Because who the hell wants to be bummed out?

I certainly don’t understand how my husband stays supportive. This is not what he signed up for (although to be fair, this is not what I signed up for either.)

Even for those of us blessed enough to be surrounded by love, it’s lonely. I cannot call my husband at work and worry him when he is already supporting his family by working hard every day. I wouldn’t want to. He has enough on him already!

I cannot call my daughters and whine every time I’m anxious or hurting, even though they are wonderfully supportive grown-ups. They have lives, and I want them to live their BEST possible ones.

So today, I’m writing as a little “reach out” measure in the blogosphere. Where my “spoonie” sisters at?

We just need eachother.

Something not a lot of people know about it a phenomenon that sick people – believers or not – don’t want or intend to check out.

We need to be able to say that we’re not okay without people assuming we are suicidal. I know people would rather be safe than sorry, but despondency comes in many flavors, and not all are true red flags. Some are just white flags of surrender.

I’m ok.

I’m not a danger.

I don’t need triage care.

I just need care.

I just need to know somebody else understands this lonely struggle with chronic pain and the havoc it wreaks on us via depression. Unless you are going through it, it’s hard to grasp, I’d imagine. I used to find this kind of thing impossible to understand myself.

A lack of serotonin and constant, unrelenting physical pain is a special kind of hell. I know Jesus walks through it with me; I totally feel his presence. I know I’m not completely alone. But damn if it can’t still feel lonely.

I’m writing today NOT because I have any answers, but because I feel alone and wonder if other chronically ill people feel me.

Do you understand?

If you do, I’m so sorry.

But how do you pull yourself up?

Let’s figure out this thing together and help one another.

When I have a painful day, and I say I’m DONE, the done-ness I’m talking about is hard to explain. It’s like when your toddler is at the grocery store and suddenly, inexplicably dissolves into a screaming, snot-faced, NO monster on Aisle 11, and cannot be reasoned with. He is DONE (temporarily.)

But I will. And I will smile / laugh / create another day.
So will you. ❤

Depression · Spiritual

When Depression Makes Landfall

Jana Greene14 Comments

grayscale photo of woman covering her mouth using her hands
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By: Jana Greene

Hi, Dear Readers.

Can I keep it real today?

I was going to title this piece, “When it’s too much,” but then I asked myself to be more specific….WHAT is “too much?” What exactly is it that is TOO MUCH for me to handle right now? The answer is simply YES.

Everything.

I’m feeling so defeated and sad today. I was doing pretty well with water aerobics, which I’ve been enjoying since February – it’s the only exercise my joints can handle. A week ago in class, I tore a muscle in my right hip doing underwater side kicks.

By the way, not one single 80 + year old woman in the whole class had trouble with that maneuver. Yet such a simple movement took me down. I’m looking at yet MORE physical therapy now and I can’t do the class for the foreseeable future.

This injury is the proverbial straw that broke the camel’s back, er….hip.

I have Ehlers-Danlos Syndrome, along with a half dozen other debilitating, exhausting, painful conditions. And it’s driving my depression into this hurricane-force thing that is spiraling in my spirit. The outer bands are making landfall today, and I can feel the intensity whipping up.

EDS is a progressive thing, meaning all of the cells in my body have mutated collagen, and I’m not going to get better.I do not – can not – take narcotics for my chronic pain because I’m an alcoholic in recovery 18 years and I still don’t trust myself to go that route.

I am literally wearing out. It’s getting to where I can hardly move my body some days, and when I do, each movement sounds like a bone cracking. In addition to being annoying, it’s painful. And embarrasing.

It’s TOO MUCH.

Yes, I know by the Stripes of Jesus, I am healed. I have had every deliverance ministry method prayed over me. People have told me that if I ‘just believe more’, I’d be healed.

To which I say, STOP TELLING SICK PEOPLE THESE THINGS. When they don’t get healed Binny Hinn-style, it adds insult to injury. Not only are you in sick and experiencing chronic pain, but NOW you doubt your faith and feel inferior and less-than a “good Christian.”

My genes are still mutated. God knows about it. He and I are square, after many years of me being bitter and angry. He knew my joints would held together with bubble gum instead of gorilla glue, so to speak. He isn’t angry with me. He isn’t punishing me. It just falls under the header of “shit happens,” and it happens to everyone in one capacity or another.

Better to just encourage and love on the chronically ill. That’s what we need.

Because I have anxiety and depression under normal circumstances, but there have been several times in my life when I couldn’t push through it…when I went from being sad and low-grade anxious, to I CANNOT GET OUT OF BED.

Not “I really FEEL like staying in bed” … no. I literally – as the Millennials say – I CAN NOT EVEN.

Can not even laugh.

Can not even cry.

Can not even do the things I love – like create art, and even just BLOG.

But I know if I don’t get it out in writing and share it with others who might be able to relate, it will only gather strength. So here is a blog post. The one thing I have gotten done today.

I’m tired. I am so tired. There are too many things going on in my home life and (lack of) professional life. Too much change. Too much pain. Just too much.

Most days, I try to be positive, and some days I can even find the humor in things, but when every joint in my body is hurting – and the hip is almost unbearable – it makes it difficult. This is approximately the tenth injury in the last few months. From small rib subluxations to finger dislocations, a sprained wrist, to all the crappy, debilitating POTs symptoms, and constant illness from having a horrible immune system….

I’m TOAST. Ever feel that way?

I know Jesus walks with me. I know he crouches down with me in the dark places. And yes, I know “this too will pass.” But it’s sure as hell not yet in the process of passing right now.

It’s the most frustrating thing in the world to realize all of your blessings, but still not be able to pull yourself up out of the sadness.

Hey, thanks for reading my work, ya’ll. In joviality and in sorrow. In celebration and in grieving. Knowing I have so many precious readers who take the time to read my innermost thoughts is both mind-blowing and comforting. We are never, NEVER alone in what we go through!

I hope when this blows over, I can get back to business being snarky and ultra-spiritual (that’s a joke, ha.) But I’m of the mind that when we are in low places, it doesn’t mean we are less-than spiritual. It just means our spirits need a little more help.

God bless us, every one.

Health · Mental Illness · Psalms · Spiritual

Hurts, Psalms, and Healing Balms

Jana Greene5 Comments

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By: Jana Greene

A long time ago, when I had retrospectively minimalist problems, I used to read the Psalms out loud in my morning devotion time. Until recently, I’d forgotten how much power is invoked in reading them aloud.

It’s 4 a.m. right now. And it’s me, it’s me, it’s me, Oh Lord…..standing in the need of prayer. I’ve been up all night with gargantuan aches, pains, and the like –  that seem hellbent of keeping me awake.

The Bible says that biblical David was a man after God’s own heart, but if you read the scripture, it seems that David was a bit of a whiner at best, and a real drama queen at worst. I mucked up a lot, made a lot of mistakes, and STILL God knew his deep and abiding love for him. I absolutely love Kind David. He GETS me.

Yesterday, I got some medical news that I suspected was coming. I’d warned my mind and body about it (as the symptoms had already revealed themselves to said mind and body), but my Spirit put up quite a fit upon learning what’s going on. Renal issues. Enlarged Liver issues. Chronic pain and more migraines to expect. Fatigue as the order of the day forthcoming. And leg and foot cramps that make you want to cry uncle at the top of your lungs at 2 a.m. (My poor, poor husband, I KNOW he is losing sleep…..)

Oh, and did I mention mental health issues arising from dealing with the stress of all of the above PLUS childhood trauma that has never been dealt with, and a whole lifetime of untreated depression? As I lurch forward in treatment for mental health issues, I’m feeling black-and-blue, my heart beat up badly, and bones and soul, too.

Which brings me back to the biblical David, bitcher of circumstance, beloved man after God’s own heart (is it possible to be both? I’m kind of counting on it….) Like David, I am on the cusp of digging deeper in my faith. Like David, I’m getting ready to clean out my closet and make room for fresh hope.

The Psalms are best read aloud because you can better capture biblical David’s desperation aloud. He is one of my favorite biblical characters because he can slay giants, become a mighty king, loves God with all of his heart, and seemingly and impulsively throw it away for a hot chick in a bathtub. Hey, who am I to judge?

Here is a man who knows frustration. Here is a man who gave us authentic prayer of the highest order.

Pray it aloud when you are at the end of your proverbial rope:

1-2 Please, God, no more yelling,
    no more trips to the woodshed.
Treat me nice for a change;
    I’m so starved for affection.

2-3 Can’t you see I’m black-and-blue,
    beat up badly in bones and soul?
God, how long will it take
    for you to let up?

4-5 Break in, God, and break up this fight;
    if you love me at all, get me out of here.
I’m no good to you dead, am I?
    I can’t sing in your choir if I’m buried in some tomb!

6-7 I’m tired of all this—so tired. My bed
    has been floating forty days and nights
On the flood of my tears.
    My mattress is soaked, soggy with tears.
The sockets of my eyes are black holes;
    nearly blind, I squint and grope.

8-9 Get out of here, you Devil’s crew:
    at last God has heard my sobs.
My requests have all been granted,
    my prayers are answered.10 Cowards, my enemies disappear.
Disgraced, they turn tail and run.  Pslam 6:1-10 (MSG

Read this aloud when imploring the Lord, perhaps in times you feel forgotten:

 

13-14 Be kind to me, God;
    I’ve been kicked around long enough.
Once you’ve pulled me back
    from the gates of death,
I’ll write the book on Hallelujahs;
    on the corner of Main and First
    I’ll hold a street meeting;
I’ll be the song leader; we’ll fill the air
    with salvation songs.” Psalm 9:1-10 (MSG)

And then this. Pray it out loud. Pray it so that the devil can hear you. Pray it so that the cells wrapped in pain in your body can know it’s true. If we don’t get healing this side of the kingdom, we get it eventually and in full, and forever! In the meantime, pray it LOUD:

And this after-God’s-own-heart, keeping it 100, plea from an authentic David to God:

“Oh, God, my Lord, step in;
    work a miracle for me—you can do it!
Get me out of here—your love is so great!—
    I’m at the end of my rope, my life in ruins.
I’m fading away to nothing, passing away,
    my youth gone, old before my time.
I’m weak from hunger and can hardly stand up,
    my body a rack of skin and bones.
I’m a joke in poor taste to those who see me;
    they take one look and shake their heads.

26-29 Help me, oh help me, God, my God,
    save me through your wonderful love;
Then they’ll know that your hand is in this,
    that you, God, have been at work.
Let them curse all they want;
    you do the blessing.
Let them be jeered by the crowd when they stand up,
    followed by cheers for me, your servant.
Dress my accusers in clothes dirty with shame,
    discarded and humiliating old ragbag clothes.

30-31 My mouth’s full of great praise for God,
    I’m singing his hallelujahs surrounded by crowds,
For he’s always at hand to take the side of the needy,
    to rescue a life from the unjust judge.(Psalm 109:25-31)

And here, finally, we see the AHA moment in which David sees the light, so to speak. He is at that pivotal place we all need to find ourselves in, in order to keep running that most challenging race set before us:

“Don’t put your life in the hands of experts
    who know nothing of life, of salvation life.
Mere humans don’t have what it takes;
    when they die, their projects die with them.
Instead, get help from the God of Jacob,
    put your hope in God and know real blessing!
God made sky and soil,
    sea and all the fish in it.
He always does what he says—
    he defends the wronged,
    he feeds the hungry.
God frees prisoners—
    he gives sight to the blind,
    he lifts up the fallen.
God loves good people, protects strangers,
    takes the side of orphans and widows,
    but makes short work of the wicked.

10 God’s in charge—always.
    Zion’s God is God for good!
    Hallelujah!” Psalm 146:3-10

Lift up us fallen ones, Abba. We are so tired.

But even in our sickness and sadness and end-of-our-rope-ness, we are are a people after your own Heart!

God bless us, every one.

 

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Chronic Ilness · Spiritual

Invisible Illness Primer – (or ‘We Didn’t Choose our Bodies’)

Jana Greene3 Comments
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By: Jana Greene
For all of you Normies (normal people) out there, I hope the shines a light on what living with a chronic illness feels like. For all of you who suffer from an invisible illness, I pray this blesses you and assures you that YOU ARE NEVER ALONE!
Woke up this morning feeling like Death’s younger, less apprenticed sister/ like “shit on a shingle,” as we used to say in Texas (!?) Like I  should get busy living or get busy dying (props to Shawshank Redemption), but suck at both endeavors right now and am kind of hovering around in between? Health Purgatory.
When people with a chronic illness tell you “Meh, I have good days and bad days,” they ain’t whistling Dixie. It means they have good days in which they feel manically invincible and squeeze a thousand little errands in that ONE day because they never know when a ‘bad’ day will hit, thus exhausting themselves and hastening a ‘bad’ day. On good days, you do the normalsauce stuff other people complain about having to do with great aplomb. Gleefully, almost.
  • BAD DAYS:  Every. Cell. In. Your. Body. Hurts. You feel like you could sleep for days  except your head is exploding.  Going out to the mailbox saps you. You find yourself wondering where the exhaustion ends and you begin. Bad days are weepy, sore, frustrating days of complete unproductiveness. You are down for the count.
  • GOOD DAYS: Yesterday was a GOOD day, I went about my business like a regular normal person. That’s all I want! – To have a solid week with no pain or migraine or nasty bug. Can I just give a shout out to the GOOD DAY, the one in which it doesn’t hurt to dress yourself, and you go to Trader Joes AND Food Lion in ONE day, and have the strength to carry in the groceries when you get home? I get a natural HIGH on days like these. And praise Jesus for making them possible.
  • MY IMMUNE SYSTEM IS A REAL ASSHOLE:  It is the Hostess with the Mostess, that system.Lets EVERYBODY IN – flu,  sinus infection, UTI issues, 24-hour bug…you name it. It is super hospitable. I can almost hear my autoimmune disease say to a  virus that’s finally moving on, “Ya’ll come back here, ya’ hear!?”
  • ‘BORING THING’ ENVY: I’m talking when you are so tired or in pain that you are jealous that your husband is cleaning the litter boxes, because he can do it and you cannot. When my friends on social media complain about the boringness of having to take a car to have their oil changed, and your excruciating migrained head can only WISH you could do something like that  on this sunny, beautiful day. Instead, you are laying in a dark, silent room praying that your neighbor will not decide to mow his freaking lawn outside your window for the fourth time this week.
  • WHY YES, I HAVE TRIED THE ST. JOHN’S WORT!: Peeps, I’ve  tried it. Whatever you are fixin’ to suggest,  I’ve done it. Fancy and expensive shake mixes, check. Green Superfood, check. Yoga, check. Eating clean, eating dirty, fasting, Britta water filter, meditation,  pharmaceuticals galore, and (of course) prayer. Also tried essential oils, Dialectical Behavior techniques, and good old fashion denial. I have even had a spinal tap once, to rule out MS.
  • WATCH FOR DEPRESSION: If you have too may ‘bad days’ in a row, the bedfellow of depression creeps in, because let’s face it, THIS SUCKS. Is it any wonder that the number of chronic illness sufferers who experience mild to severe depression is sky high? When you don’t feel good, YOU DON’T FEEL GOOD, and it’s a real buzzkill to your body, mind, and spirit.
  • SILLY STUPID THINGS: Cough or sneeze? Subluxated rib (ribs temporarily dislocate – it is every bit as fun as it sounds). Drive over to the Quick-E-Mart? No can do – double vision from a migraine. I once broke my ankle in two places from climbing out of bed and walking to the bathroom to pee. Torqued my leg in just the ‘right’ way, and felt my bones breaking. Turns out, it is related to the syndrome I’ve been diagnosed with. (I wonder what the odd are of harming oneself just by getting up to pee? Hmmm.)
  • HUGS ARE THE BEST: I’m not actually sure this has anything to do with chronic illness, but it surely doesn’t hurt!
  • FAITH AND HUMOR are my saving graces. How do we still smile and laugh in the midst of pain and suffering, when our bodies that betray us on the regular? Because NOT to do so would take us from our feeling like death ‘warmed over,’ and straight into death – of the spirit and mind, if not outright and altogether. Gallows humor is still HUMOR.
  • PRAISE GOD FOR YOUR HEATH AND NORMALITY. If YOU are a regular normal person whose body jovially goes along with whatever you tell it to do, get on your knees and thank your Maker. Truly. Dude, I’m so jealous of you right now.
  • INVITE US: I know we cancel plans a lot. It makes us feel unreliable, and I’m so sorry for that. It comes with the EDS, Hashimotos (or a plethora of other ‘invisible’ illnesses) and is one of the worst things about this. It isn’t that we don’t miss you and love you, it’s usually because we are in pain or chronically fatigued and simply CAN NOT. It’s not you; it’s me.
  • APPRECIATE YOUR SUPPORT SYSTEM: My Beloved (husband) has stood by in side for the past 10 years like crazy. I don’t know how he does it (I sure as hell wouldn’t be married to me!) He has never doubted my illnesses or pain. He takes tender care of me every single day. You need people around you who BELIEVE you and will never give up on you.

WE DIDN’T CHOOSE THIS FOR OUR BODIES. WE DIDN’T CHOOSE THIS FOR OUR LIVES:

Thank you for your understanding, Normies. We need your support to survive this thing.

God bless us, every one.

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Health · Spiritual · Spirituality

Whatever Comes Further, God is already There

Jana Greene7 Comments

 

bed

By: Jana Greene

“Hey, God…..”

“Yes?”

“What’s going to happen further along down the road?”

“I’m sorry, that’s on a need-to-know basis. Just trust me.”

“But….”

“Trust me, love. Whatever comes further, I’m already there with you.”

I’m always badgering God about what’s next, even though I know that I couldn’t even handle it if I knew. Seriously, I COULD NOT EVEN. But in some convoluted way, I ask God to reveal to me the outcome of certain things, but the gift of prophesy is not my strong suit.

I am considering this today as I’m struggling with my health issues. I have a rare-ish condition that causes chronic fatigue, migraines, intermittent system pain, and recurrent infections. It’s not going to kill me, but some days I feel like it would kill me if it were more merciful.

Here’s the thing, though: If God had revealed to me that I would do battle with this for the rest of my life, I don’t know that I would have stayed sober. I don’t know if I’d handle it well at all, so I’m grateful for the not knowing.

While I was busy NOT knowing, He went further down the road with me when I wasn’t even looking. The manifestations of His mighty hand over this struggle were being constructed long before I was even symptomatic.

If God had revealed that I would carry this thorn, maybe it would have gone down like this:

“Child, enough badgering! Come sit with me, and I will indulge your curiosity….

“As you grow older, you will feel like your mind and body are falling apart, because they will be – sort of – and you will be scared and tired and frustrated. But I’m working on an infrastructure for your life so that you will be able to carry this yoke…..

“I will bring you a spouse who adores you, and believes you when you are telling the truth about your pain. He will never give up on you, even when you are really sick….

“I will drop friends into your life with EXACTLY this same disease that you suffer from, and they will seemingly drop from the clear blue sky. You will marvel that I took such care to place those perfect people in your life at just the right moments. Lean on them and let them lean into you. They are sent directly from me….

“When you are having a bad day and hurting inside and out, I will scootch right up next to you so close that you can feel my love  for you, even through the pain. My Holy Spirit will be IN you, giving you fresh hope, even through the tears…..

“I will give you the gift to write about your experience, so that you can pay this Love forward to others….the ones who are gravely sick but look well, the ones whose labs and tests all come back normal and they feel like they are losing their minds, and that nobody believes them. YOU will comfort and believe them, just as you have been comforted….

“I will give you humor in copious quantities, so that you can not just survive, but THRIVE….

“Whatever comes further, I am already there with you.”

I get by with a LOT of help from my friends.

God bless us, every one.

 

 

 

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Grace · Spiritual

How do you Pray when You Cannot Focus?

Jana Greene5 Comments

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focus
The most important thing on my cork board. No matter how unfocused I am, this is my Jesus.

By: Jana Greene

Over the weekend, one of my very dear girlfriends contacted me. Our friendship is a God Thing to the inth degree. A years ago, we became Facebook friends somehow, and then NAMASTE! – my spirit recognized her spirit the instant we talked. We have much in common health-wise, many of the same struggles. It was as if Abba said, “Hmmm….these two could really bounce things off each other.” And he was right.

She is going through a prolonged episode of ‘brain fog’ due to chronic health issues. If you are healthy (or your brain is young) the fog might be a foreign concept to you. It’s more than forgetting what you went in to the kitchen for. It’s like your thoughts are trying to gain footing on a very slippery rock.  It’s a dulling and jumbling of your mind, which can really do a number on your spirit.

“How does one keep a solid prayer/reading life with chronic illness?” She asked me.  “When you either oversleep (because you are sick and need the sleep, not because you’re lazy), or you truly can’t muster up a prayer, or read. Or your mind is all over the place, not stable like it used to be? Maybe a good blog topic?”

A very good blog topic.

I am worlds WORST with carving out quiet time/devotions. There, I said it. It’s OUT THERE now. And It isn’t because prayer isn’t important to me.

Between chronic pain, ADD (and OCD, which can be kind of severe at times)  and anxiety…there are times that the best thing I can offer is conversational prayer with God throughout the day. For a short while, I took medication for my ADD and the BIGGEST change I noticed was that I could pray like a regular Saint Augustine! HOURS. When I had to go off of it because it raised my blood pressure, I felt like somebody yanked the prayer rug from under me.

I still pray, of course. It’s a constant conversation, but often not terribly structured.

After I saw the movie “War Room,”  I was so stoked to make deliberate time in my bedroom closet. I covered one wall with cork-boards on which to pin my heartfelt prayers every day as soon as I woke up. FIRST THING. Maybe I’ll be so fervent I’ll go into the Prayer Closet several times in the middle of the night! Wow, I’ll bet I will REALLY hear from God then! My boards will resemble the Wailing Wall in Jerusalem, it will be so jam-packed with my sacraments and epiphanies!

The next morning I did, in fact, enter it like the Holy of Holies. But the day after that I had a migraine and another day, my anxiety was too full-on to sit still, and other days I just forgot.

Mostly my self-crafted Prayer Closet just caused me to feel guilty EVERY single time I’d walk in to get a pair of shoes. Eventually it went like this: Enter closet for shirt, avoid eye contact with The Wall, feel massively guilty, avoid God because I can’t even hack this focus thing, emotionally self-flagellate. Vow to spend two hours solid in it the next day. Fail to do so and feel terrible. Lather, rinse, repeat.

But then I realized that I talk to God conversationally all day long. He knows my heart, he knows my pain, and my janky brain fog. In trying, trying, trying to be better, I set myself up for failure (it’s kind of a specialty of mine.)

But God, who created my brain and all the other miraculous workings of my body, is not going to withhold from me because of my limitations. That would be pretty freaking cruel. Instead, he caulks in the cracks and loves me like MAD.

My dear friend  is also frustrated with hearing from God the way she used to when she was brain fog-free. I get that, too. That’s the worst thing. But I think he – knowing our plight – compensates by speaking to us in our constant conversation with him. He is never more than a dozen thoughts from my heart, and he knows it.

When someone comes to mind, I pray for her. When I’m worried, I pray. When I see a pretty flower, praise the Creator and thank him for it. Thank him for my friends and blessings and hot coffee.

Especially, I tell him I trust that he is working on issues I don’t see evidence of yet, and ask him to help me trust when I don’t.

I ask for focus fifty times a day, at least.

But when I can’t get through the fog, here’s the cool thing: Grace!

GRACE is the caulk in the space between our best intentions and highest enlightenment. It fills in the cracks and expands in the crevices where I’m foggy or anxious, or even just lazy. We are not perfect but he holds us close to us still! No guilt required.

My sacraments and epiphanies don’t always come down from Heaven like a bolt of lightning when I’m having an Instagram-worthy moment of devotion with the perfect cup of coffee.

Sometimes they trickle in increments of A-Ha! moments that Holy Spirit doles out and pours into me. When I’m too pained or foggy to tune into his frequency, he reminds me that it’s okay.

I told my dear friend that perhaps we can meet this week and brain-dazed and janky together. Pray awkward, foggy prayers together, and trust grace to caulk in our rough spots. Listen for the bolt of lightning, but be okay with the A-Ha moments and roll with it as the Sisters in Christ that we are. Raise a War Room right where we are, where two or more are gathered.

God isn’t angry that we have unfocused seasons. He just desires that we keep the conversation going, and listen for his voice.

God bless us, every one.

 

 


 

Devotional · Health · Holy Spirit · Inspirational · Jesus · Love · Mental Illness · Recovery · Spiritual

No Pain, No Gain – Chronic Illness and the Christian Church

Jana Greene12 Comments

thorns

“Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

My grace is enough; it’s all you need.
My strength comes into its own in your weakness.

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

2 Corinthians 12:7 (The Message)

As I write this, I have the flu. I think I am on day six of it. Every once in a while, I get up to get water or crackers and notice that the sun has made an entire rotation around the earth since the last trip to get water and crackers. And one week prior to getting sick with the flu, I had a freak allergic reaction and infection from a spider bite. And three times previous to that in the past month, I have had debilitating migraines. I have a lot of horrible migraines, for which there are harbingers of auras, sensitivity to sound, and numbness of my face (always disconcerting, that one.)

I get sick a lot. My immune system is not terribly strong, and I have a lot of pain and inflammation issues. If you saw me, you might see a healthy middle-aged person, a little fluffy and dented,  but well. Illnesses don’t always show on the outside. Oftentimes, the erosion is on the inside, where you cannot see.

Some of my dear friends also suffer from ‘invisible illnesses’ – ranging from bi-polar to nerve diseases, diabetes to chronic fatigue. They are health issues that are chronic – meaning more or less constant. Many of them are followers of Jesus Christ, such as myself.  Chronic illness reminds me of alcoholism, in that I seemed to serendipitously end up as a member of a club I didn’t choose to join.

I do, however, get to choose my membership in the body of Christ, which needs to better deal with some of the realities on this planet – chronic illness being one.  I am not the only Christian who has felt awkward about her health problems in the Church proper (not my particular church, which kind of ‘gets it’ on the level … but the church in general.)

Many in the Christian community don’t really know what to do with chronic illness – of that I am convinced.

I believe in miracles all day long. I believe that signs and wonders abound every single day. Nothing is impossible for God – nothing! He can rearrange every cell in my body to work in perfect alignment. He does it for people all the time. Knowing that can make it especially frustrating to suffer.

But the reality of the matter is that some of us will not get the healing we imagine this side of the Kingdom. People suffer in innumerable ways all of the time, and die from disease every day. That’s the reality.

Our bodies are indeed the Temple of the Holy Spirit, but I don’t for a minute believe that God only takes up residence in the Taj Mahals among us. Jesus was not put off by hanging out where there was great pain and suffering – in the alleyways. In bodies like ours.

He can heal me, and one day he will. Until that day, one question usurps the pain, the fatigue.

“Do you trust me?”
Do I trust Him even in the debilitation and pain?

Either I believe that all things work to the good or I don’t. Either I know that His grace is sufficient, or I don’t. On especially painful days, it’s harder to come to terms with that.  If Jesus was not spared pain, why do we imagine we deserve to be spared the experience?

Sometimes we do not get healing that the world recognizes as whole. When Christians insist that you become healed in a specific way on an ongoing basis, a number of things happen to the sufferer, the church, and  most awkwardly, the world as it observes us.

And this makes us all uncomfortable. Let’s bring this thorny issue  into the light where we can deal with it.

The sick believer isn’t believing/praying/wanting wellness enough

Let’s be honest. After your friends have prayed for the same healing for you over a period of months or years, you might start to believe that you are just a dud. I know I have felt like a dud many, many times. The whole “believe harder” angle is so damaging, because it places the miracle out of God the bestower, into you the believer. And nothing we do or do not do causes the heavens to release power. It is all in Christ Jesus that we receive. It is our job to receive what is released – and when you are suffering, accepting and receiving can seem a whole lot harder than turning water into wine.

The sufferer feels embarrassed/ashamed that they have not been restored in the way they’ve prayed.

It’s no fun being run down or in pain. It sucks, badly. If you are healthy on a regular basis, praise God! Please don’t tell sick people, “Wow, you are sick again?” or “I never get sick.” I think I speak for chronic illness sufferers everywhere in saying those comments are not at all helpful. Ultimately, we end up lying to those around us who ask “So how are you feeling?” with the f-word. “Fine.” After all, who wants to hear the same story over and over? It feels shameful, but it shouldn’t. If we cannot be transparent in the church, where is it safe to do so?

If I don’t get healthy, my witness is damaged

This is a pretty persuasive lie, because it makes common sense. Who wants a piece of what I’ve got, if I’m sickly? Over and over again it has been confirmed to my spirit that the world needs to see faith in imperfect lives. Because all of our lives are imperfect, and nobody can relate to perfection. You are going through what you are going through, that is your reality.

“If it hasn’t happened by now, it isn’t happening” is never true

I will never stop asking for healing. I will never stop interceding for my friends who are dealing with chronic illnesses. As chronic as these conditions are, they are ultimately temporal. And God wastes not one single hurt I go through. He can use it all, and He can take it all away. What the devil means to use for destruction, our Father can easily use as a means to love. That’s a fact.

God is not punishing us

God is love in its purest form. He is not sadistic. He hurts that you hurt. His plans are much bigger than the pain. That is the foundation of my survival, because it is truth.

You don’t need to ‘get well’ so that ‘God can use you’

What kind of propaganda is that? Stop saying that, church!

If I am supposed to do a thing, but I cannot because I am sick, then I am not supposed to do the thing. My illness is not keeping God from doing HIS thing, which is the main thing. He equips me, and He knows my innermost being and what it is capable of. That’s the thing about it.

Run the race He has set before you. You are not responsible for running the courses set for others.

Jesus is not afraid of catching my ick

Although migraines are not contagious, it is easy to fall into thinking He is staying far away. But he is present in the pain, He doesn’t run from us when we are in the valleys.

I think about the paralyzed man who was healed by Jesus in a common setting – the one who was told to pick up his mat and walk. This is so easy for God to do – to enable that! Why would he not allow us all to pick up our mats? Why are some of us barely dragging our mats behind us? I cannot begin to understand.

I’m inclined to believe it has to do with the Bigger Picture. For the sake of the whole purpose have had life breathed into these bodies – so that someone else can be blessed by hearing “I know what you are going through, you are not alone.” If suffering comes at the price of one other person knowing that God is to be trusted even through the circumstance of pain, it is somehow more tolerable.

Until I get my full healing, I’ll tell you what Jesus does for me – He gets down on the mat with me and loves me to pieces. That’s what I think the church should do. Pray, always! But also bend down to the hurting people where they are – and love them to pieces in the midst.

We don’t always get restored the way we want, but we always have comfort available to us.

We should stop selling Christianity in a slick package that promises a specific healing

Guess what? People see other people get prayed for that still suffer and die all the time. It’s the circle of life thing. Christianity is so much more than surface healing – so much deeper than tissue and brain matter and physical vitality. It is relationship with the Creator….. SO much MORE. And so much better.

Never stop praying in the Spirit. But get down on the mat and love people where they are.

I know for a fact that other people have gone through pain before me,  so that they could impart that same message to me. So, in a way, I am grateful for the pain of others.I am glad  I can pay that forward. When I have a finite amount of energy  every day, and I can either use it to raise my fist to shake it at God – because I don’t understand this! Or, I can raise it to praise Him. I am about 50/50 with the fist shaking and worship through the pain at this point. But I’m getting better at the latter.

Love the sinner, hate the sin. Love the sufferer, hate the pain. Jesus does.

Come to me, all you chronic pain sufferers, and I will give you rest.

Come to me all you whose minds are tortured with mental illness, and I will give you a soft place to fall.

Come to me, all you exhausted souls, and I will give you my Shalom.

Not a single other human being on this planet might know how much you are hurting, what your body and mind are going through. But God does. Make room on your mat for Him until you can get up and run that marathon.

Are you weak and sick? Then you are strong!

… It was a case of Christ’s strength moving in on my weakness.

God Himself inhabits our puny, struggling flesh as if it were the most beautiful temple in all the land. Because it is.

Rest in Him.