Tag: ehlers danlos syndrome

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

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. ❤️

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 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.

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.

Depression · Spiritual

When Depression Makes Landfall

Jana Greene14 Comments

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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.