Tag: ehlers danlos syndrome

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.