Tuesday, July 26, 2016

On Chronic Pain and Utterings of Joy

ATC Sized "Utterings of Joy" - Small works by Crystal Marie Neubauer
This morning I left for a couple of appointments and knew within 5 minutes that I wasn't going to make it. I wrestled with it at first, not wanting to get any further behind on my schedule, but I knew I was going to make a bad situation much worse if I didn't heed what my gut and body was telling me; I am in a serous flare up of symptoms previously thought to be Lupus, Connective Tissue Disorder, and Fibromyalgia – newly diagnosed as Chronic Lyme and I needed to go home and get back in bed.

You don't think about bones much unless they're painful. 

Stub your toe, fall on the ice, whack your elbow on the counter, these sudden impact occurances cause the kind of severe pain that I've been experiencing on a nightly basis. Except those one-off incidents, while painful, subside after a time. Jump up and down holding your foot trying not to swear, rub your elbow while tears stream down your cheeks and you make jokes about your "not-so-funny bone", and the sharp intensity of it subsides to a mere throb, then finally just a memory that makes you wince and then it's gone.

But my nightly pain is more like a severe toothache- in that unrelenting painful throbbing that demands all of my attention kind of way. As a matter of fact, it is a toothache. Not just one tooth, but all of them. They suddenly feel too big for my mouth and I can feel each one as a sort of sensory X-ray, along with the jawbone surrounding them. And the cheekbones above them. And on into my eye sockets. Throbbing pulsing bone pain that does not stop. I feel each pressure point where my head rests on the pillow, where my knees and hip bone meet the mattress. It is a memory foam, cushy comfy new mattress, but some nights the pain makes it feel like a concrete slab.

At night, I feel my skeleton more than my skin, but my skin- oh how it burns. The backs of my legs, my buttocks, wrapping around my knees, up towards the center of my back and down to the bottoms of my feet in an all over body neuropathy. It burns with that sense that I stayed out in the sun too long but deeper, the way it does when you exercise for the first time after years in the easy chair. My ankle tingles and that crawling electrical-gone-haywire sensation climbs up my limbs, across my shoulders and becomes a full on numb sensation on one side of my face, especially when I hit the proverbial wall. The one where I know I have pushed myself too much that day. And to make it especially challenging, the wall moves from day to day. Some days I shower and get dressed and decide to dry my hair then there it is, I am done for the day and I have to lay back down. Like today.

The exhaustion never ends- it is debilitating and muscular. The closest description to accurate I've read is having the worst flu and the worst hangover of your life all rolled into one. It is a vicious cycle when laying down is the remedy and the trigger. When I am up and moving through my day, the intensity of the bone pain and burning skin give way to muscle spasms and joint pain, which is migratory- but almost always starts with the bottom of my heels in my feet. I get out of bed, or out of my car, or up from my work table and feel like someone took a hammer to them- right on the bottom of my heel bone. I hobble and limp until it stretches out and I either grow numb to it, or it releases enough to function. If I stay on my feet it will decrease, but sooner or later it begins in my knees and occasionally that one special place in my hip, as it lets me know I was moving a little too fast and a little too confidently.  

The tingling also roams - to my hands, my feet, my knees, either one side or the other. And then throughout the day come strange sensations that I can only describe as internal waves of unwell. I'm working in the studio, or talking to a friend, or walking through the grocery store and it rolls up from the floor and rises to my head with a weird feeling similar to when you step off an elevator, but coming from my insides. It happens fast and I am hit with an overall feeling of pre-nausea, that moment just before you know you're going to throw up, but I never do. It lingers anywhere from several minutes to several hours with little dizzy spells and lightheaded sensations to make it extra special.

Depression and anxiety are also symptoms. It is hard to sort out when it comes because of the pain, or as a companion to it, but it doesn't really matter. It is there when I have days with nights like these. And this week has been filled with days with nights like these. It starts with an increase in my detox supplements- a necessary step if I ever hope to get well enough to try to treat the Lyme directly. Each time I increase the dose, these symptoms, many of which have already been my reality for years, flare up to this near unbearable array.

The depression doubles down and whispers it will never get better.

It will never get better.

It will never get better.

There is no relief in sight. It will never get better.

Particularly dark thoughts come when each painful pulse is accompanied by this whispering thread. 

It isn't a mood. It is a symptom that is as real and powerful as the physical pain itself. 

Hours are spent each night going through the same routine. Toss and turn trying to get comfortable, a few hours of light sleep before waking in unbearable pain. Then maybe if I try the lavender oil, or an extra dose of the magnesium, I'll get enough relief to fall asleep, but it usually doesn't work. My mind ticks through the list: Maybe I should get up and take a bath? A hot shower? Maybe if I wrap the ice pack around my neck and put the heating pad on my back? My heating pad is my constant bedtime companion. But each of these remedies bring only a moment of relief before the change in my body temperature causes a reaction similar to a menopausal hot flash accompanied by that rolling elevator of nausea rising and I am tearing the covers off and nearly crawling out of my skin while the room spins. 

When daylight finally comes it takes a while to drag myself out of bed. 

My daytime symptoms, along with the pain and fatigue, include hyper sensitivity to noise and light especially in the early hours. Things as benign as tap water or lipstick cause a blistering swollen rash inside my mouth - my body's response to the toxic load of going undiagnosed and untreated for so long. 

Hyper sensitivity to food and increasing allergies is also a common symptom of Lyme. 

My neck stiffens and has knots along each side, as it clicks and sounds as if bone is grinding on bone. A symptom that I was shocked to find out had anything to do with this illness, but each increase in my detox regimen brings a little more mobility, one tiny glimmer of hope that I am on the right track. 

My hands tremor, my insides often feel like I OD'd on caffeine. 

I can feel my brain shaking. 

My heart rate speeds and slows and slams and beats out of my chest. I haven't had acne this bad since I was a teenager. 

Cognitively, memory problems present themselves by way of forgetting my words, not being able to match names with faces, and getting lost on the way to the same grocery store on the same route I've taken a million times before. I look up and get that sense that I am lost and nothing around me looks familiar and I grow anxious as I drive looking for anything, anything that will spark my recognition. Thank God for cellphones with GPS. 

I could go on and on with this, but I am fairly certain you may not have stuck with me to read this far. I mean, come on, it's depressing! 

Many of these symptoms have plagued me for years, but now they are flaring to the nth degree and coming all at once. I don't know how long I will have to go through this, or if it will ever get better. I have the double whammy of finding that my body does not detox the Lyme or the mold or other toxins on its own, so treatment is going to be long and slow and painful. Someday I may share what happens when I take anything that kills the Lyme, but this is enough info for your reading pleasure right now. 

You might feel worse after reading all of this, and I am sorry for that, but somehow it made me feel better to write it all down. 

To purge just a little bit, the loneliness of the experience. The harrowing pain of it all. To know that someone else can read this and maybe get a tiny glimpse of understanding. I don't really look sick – unless you've noticed the bruises or the acne or the dark circles under my eyes. 

Or caught me with my head on the steering wheel as I give in to the knowledge that I am not going anywhere today.

It is hard. It is very much out of my control. And there is very little I can do about it. 

I am not too stubborn or proud. I don't want to be doing this on my own, but the support of a companion is not there. That's not an indictment, but it is a fact that I cannot change. So I either go through the sickness of detoxing on my own, or I go through the sickness of not detoxing- this illness is not going away.

Either I make the best of each day and try to find my light, or I don't. 

It is up to me and it isn't.

I am alone and yet I am surrounded and filled with the presence of God.

Each day shifts and each day stays the same and I move forward and release the toxic load. One pill, one symptom, one memory, one emotion, one day at a time. 

I don't tell you all of this to wallow in it. I had a completely different post in mind to write- something witty and uplifting and encouraging to be sure. But this is where I am today, and I know it is hard to read or hear or believe.

It can be tempting to look away in the face of other people's pain. We only have so much compassion to go around before we have to shut down. Some of us do it more quickly then others. But pain, in all forms, is universal, and we don't have to suffer it alone. 

I have been on the verge of giving up, even though I don't know what that looks like. But then I remember that I am really not alone. I have all of you. And I have faith – no, it isn't that I have faith, rather I know that faith has me. 

And it isn't that I have God, but I know that in spite of the whispering lies of the darkness, that God has me.

Thank God He has me.

Thank God He has me.

Thank you God that you have me. 

And I still have art. That's what I am celebrating today.

That I can still step into the studio on good days, and even most of the bad, and release all of it by way of these wordlessprayersThese scraps and these bits, and this pain, and all of the darkness and the light. It all comes together with a bit of paste and a song or two. 

My offering sent up to the heavens and returned in the form of tiny utterings of joy


  1. Patricia Burg5:53 AM

    It IS painful to read your words, Crystal, so painfully and beautifully written. You transform, at least for moments, your pain into beauty In your writing, in your expressions -- your art-ful living. I believe that our Father will redeem your pain in His graceful, creative way- He's already begun. His ways are mysterious. I will pray for healing for you, skilled health direction, effective detox. How brave to share what you know will be difficult to read. You shared truth. Thank you.

  2. I DID make it through your entire post and I'm glad I did. I had no idea how severe your paint was. I know we really don't know each other well yet feel connected to you, ever since the weekend class I took at The Healing House. I am here for you in any way possible. These are not idle words, they are real. I can help with whatever. If you need someone to come help you prep multiple boards for you so you can continue to make your art when you are feeling good. I am there. I will send healing energy your way AND a virtual hug!!

  3. You madam are a light and hero in my life now. I had only followed and been inspired by your work alone for many years. I was newly diagnosed with fibromyalgia just recently. It wasn't a huge surprise and I've had it for a long long time. It simply explained so much unknown reasons for horrific pain. You could NOT have written this more succinctly. So much of it is the same as fibro. EVERY SINGLE word and feeling here from you, lit my heart on fire GOOD/and BAD. You are a love a brave love and are in my kneeling down prayers from here on out. All my love and strength, wanda xoxox

  4. Oh Crystal, I read until the very end with huge tears rolling my face. I know to a small extent of what you are going through. I have Sjogren's and Rheumatoid Arthritis, both auto-immune disorders and if you know anything about Lupus or Connective Tissue Disorder then I'm sure you have heard of these two as well. The words you use to describe the fatigue are so spot on. I can't write,or heck, even speak as eloquently as you describe everything here. And it is so hard because aside from the eyes, everything does look normal from the outside. (Unless I happen to walk with a limp that day from pain in my knee, hip or foot.) That's what makes it hard for other people to understand how we could have so much going on when everything looks so well on the outside. We feel isolated and alone and the depression, oh the depression. Who knows if it's a symptom of the flare or if it's worse during a flare because of all the pain? Even when not in a flare, the fatigue is still with me, and so is the depression. I used to be pretty sharp and have an excellent memory. My clients used to say I was efficient. It's like there are cobwebs in my brain. I have trouble with words, and sometimes in the middle of a sentence completely lose what I'm saying. The whole concept, not just a word, of what I was speaking about is gone in a blink. I know that happens occasionally to everyone, but to have it happen several times a day is not normal. Every day is a battle. It can seem very lonely, but please know you are not alone and there are others who can empathize and faith can help hold you up when you don't think you have the strength. My prayers and heart and love goes out to you.

  5. I won't pretend I know how you feel, because I don't have chronic pain, but I DO have ME/CFIDS (and every one of the symptoms you described in your last post?, I have too) and this time last year I could barely do anything. My cognitive symptoms were terrible and there were days when I considered two rows of knitting a major accomplishment. Constant migraines, total exhaustion, constant gut problems...

    So I do have an inkling. And I am truly truly sorry you are suffering so badly.

    The main purpose of commenting though is to share that I have found some things which really helped me, and maybe would help you too - the main thing is Yoga Nidra - it's not movement based yoga, but translates as yogic sleep. It's somewhere between guided meditation and deep deep relaxation and it has done wonders for my cognitive issues. It is done lying down, on a bed if necessary or on the floor and can take anywhere from 10 minutes to an hour.

    My cognitive symptoms improved immediately and I found after a few weeks of regular practice my sleep improved too. It's regular now and reasearch shows that this is due to the Nidra.

    There are some free recordings here http://www.yoganidranetwork.org/downloads

    And Lily Goncalves has some lovely ones to purchase http://www.blooming-lotus-yoga.com/yoga-nidra/

    I'm not affiliated with either of these by the way.

    It's maybe worth mentioning that meditation is known to help the immune system too, which can only be helpful. I know you might think it a bit odd to suggest this, but I had some of the same symptoms and as I said it has helped me hugely.

    I've followed your story for a long time Crystal, and I hope that your health begins to improve soon, you've come through so much and you will come through this too.

  6. Crystal, I did read your entire post, the least I could do to try to witness another's pain and troubles. You must be incredibly strong to endure all of this. Please stay strong. May you come through, may your pain subside, may your life improve and your art sustain you. You have my sympathy and admiration. Please endure.

  7. Hi Crystal, I've been following you for years, and have bought one of your pieces. With all the activities you do, and all the successes you've had with your work, it's astonishing to me that you've been battling this terrible disease. You have my great admiration, and also my sympathy. I don't think I have Lyme disease, but I definitely understand the depression and anxiety, because it's something I struggle with every day. About a year and a half ago, I was working a very stressful job as a special education teacher. I had suffered from depression for a number of years, but began having panic attacks and severe anxiety. I suffered a nervous breakdown and had to quit teaching. During most of that year and a half, I would wake up every day and say "I can't live like this." I have finally seen some improvement for about a month, due to a change in medication, but I know what it's like to feel like you can't do it, and to keep going anyway. My heart goes out to you. Coincidentally, I was bitten by a deer tick this Spring, and got the telltale "bullet rash" that often signals Lyme disease. I was lucky that I got the rash, as I know that not everyone does, and also lucky that it was in an obvious place where I could see it, on my upper arm. I still need to be tested, I think, to make sure it's gone. I had no idea how bad it could be. I'm sending you all the positive energy I can, and will keep you in my thoughts and prayers. You are not alone.

  8. Greetings Crystal,
    We met during your appearance at a mid west art show (I attend so many, I can’t recall which one right now). I remember being drawn into your booth from a distance by the beauty of your art work and then being left nearly breathless by the intricate details upon close examination. What started as visual intrigue transpired into visceral enlightenment. After conversing with you, I realized we not only had similar artistic sensibilities (I spoke of my collection of ephemera waiting to be made into art work) but we also shared a spiritual perspective. To hear you describe your experience weighs heavy on my heart but hearing you describe how creating your art is a salve for your soul inspires me. Please know that “semi” strangers are praying on your behalf for your healing, and at the same time, are being encouraged to create -- led by your example. Bless.