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

chronic illness · Spiritual

The Lonesomeness of Chronic Pain

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Hi, friends.

I attended an Indigo Girls concert with a dear friend Friday evening. We had a blast! I didn’t think I was going to able to go at all, so I was thrilled to be there. But by the time I drove back home, I was in severe pain.

Some of us chronic illness patients are in some degree of pain 24/7. I’ve had to learn to conduct life with it, love with it, laugh with it, function with it.

People have alluded that we couldn’t POSSIBLY be in THAT MUCH pain so often. A person with chronic pain couldn’t possibly get dressed every day, or enjoy a comedy, or maintain relationships in the misery of constant pain.

But we certainly cannot writhe around on the floor screaming in agony 24/7. We want to, but we can’t, because after the writhing and fit-throwing, guess what? There is STILL pain – infuriatingly, but there is also still life to be had.

I have had too many tantrums to count, over the years, and I reserve the right to have others when applicable. They can be cathartic. But it’s not a sustainable mindset.

At some point you have to stop writhing and crying. The world goes on, and so must you.

So we learn to mask, and we mask the pain constantly; because life requires us to in order to function in society. We have families to take care of, and friendships to give attention. We have chores and duties.

It’s unfair in EVERY level to all parties involved.

But I see no benefit to being Pollyanna about my health – if I’m not transparent with y’all, who does that help?

So I write about it a lot – it’s 4:30 in the morning and I have tears of frustration in my eyes, and it’s the loneliest feeling I’m the world to be in my own body right now. Writing about it releases some of the pressure in my mind.

Just in case any of my chronic pain friends are also up at 4:30 in the morning ina fetal position, fighting nausea, or just feeling alone… please know you’re not alone.

I see you, I hear you, and I love you.

Better days will come – I know because I had one Friday. Sometime I even have a few in a row!

It’s the assuredness that on another day, there will be one more day trip with My Beloved. One more awesome concert. One more beach day. One more delicious meal (when I can eat.)
In other words – much like working my recovery program – it’s done one single day at a time.

Invisible illnesses exist. People who don’t look sick can be very, very sick. Always be more kind than usual to folks, please. You never know what another human is going through. Love. ❤️

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.) ❤️

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…)

January 29, 2020January 29, 2020 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

October 2, 2019October 2, 2019 Jana Greene2 Comments

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. ❤