Loss

Adrian

It takes strength to raise a child, but it takes a different kind of strength to lose one.

There was the fear. The panic of what will we do. Conversations about an abortion that I knew I could never have. It wasn’t a serious consideration. I think we both knew from the moment that pink line made itself visible on the strip, that we were going to go through with the pregnancy. We were going to become parents.

One test wasn’t enough. There were 4 in total. 2 at home, 1 at Planned Parenthood, and still 1 more at Kaiser. It was official.

It was summer, and there was young love. It was the kind of love forged in a shared crisis, made fast and intense by teenage hormones and no idea what paths life offered beyond the sheltered protection of being young.

I had just turned 17.

Promises were whispered, a marriage proposal for when we were older, made sweet by the gaudy plastic ring from a bubblegum machine. It was huge and yellow and ugly, but I said yes, sure- so sure-of this person before me.  We knew absolutely nothing beyond our summer love. We couldn't predict the turmoil and toxicity that would one day become our relationship. We couldn't know that this wasn't a valuable love, it was the selfish kind. The kind that drags you in deep and tries to drown you. That day his mom said we could end up hating each other down the road, we looked at one another across that table and smirked. It was impossible. Our love, this heady, intoxicating, I will do anything for you love… it was ours. It wasn’t ever going to disappear into hatred or distance or regret. It was tender and delicate. Passionate enough to have created a life. I was terrified, but I was also hopeful. I held his hand, I allowed him to love away the fear.

The fighting started. Little things. Rooted in the impractical reality of carrying a child at 17. A human being, nestled deep inside of me. We circled things in that JCPenney’s catalog and looked at baby books at the mall. On my lunch break I would window shop for baby things, not really sure this was happening, but propelled forward by daily life. It didn’t feel real, except late at night, when I lay awake, wondering, daydreaming. I wanted to be a mom. No matter that I had broken my parents’ hearts. No matter how scared I was or how unreal it all felt at the moment. Already I knew my child. No bigger then a poppy seed, my baby.

There was that fourth of July night. I sat on the hood of my little blueberry colored car, his arms wrapped tight around me. I watched the fireworks blaze the night sky, realizing it was my first ever fourth of July spent away from my mom and dad, another symbol of how I was being thrust into adulthood. I was sad, and scared, and unsure of how to handle this budding independence.

I read What to Expect When You’re Expecting on a lazy weekend on my friend’s couch. I took naps, and had mood swings, and felt my back ache. But life went on. I listened when my mom said she was coming around and was getting excited at the idea of little pitter-patter feet to come. My dad stopped speaking to me. There was silence and disappointment, and I had no way to bridge back. No way to be a little girl anymore. He wanted us to get married, have an abortion, keep the baby. My mom told me I broke his heart and that he had cried when she told him. I had never seen my dad cry.

There was the night before my first prenatal appointment. I lay awake all night, writing in my journal, too excited to sleep. I drew a diagram of how to rearrange my bedroom. I thought silly, girlish things, like how I would carry my pink comb in the diaper bag. We named our baby, not yet knowing the sex.

That morning he brought me my favorite orange juice, and we went with my mom to the appointment. They waited in the other room, while I went in with a bunch of other women, and watched videos and filled out paperwork. My due date had not been written on the sheet given back, so I went up and asked. March 2, 1998 they said. I had blood drawn.

I was spotting. Had been since early that morning. I had thrown on a pad and was told it was normal. After the appointment, my mom went to work and he and I drove to Arby’s and then back to his house. The blood was increasing, and so was the pain. Cramps at first, and then the dull ache spread to my legs.

Denial brought us to the bookstore. There was no internet, no quick Google search to provide answers. We both thought it, but we did not utter it. Not one word of it. The pain in my body came on swiftly. Walking through the mall became almost impossible. We drove across the street to his mom’s office. She had me call Kaiser, who told me to come in just to be on the safe side.

Hope. Hope. Hope.

I would not believe I was losing my baby. Not when the pain became so very unbearable... When it felt like my back was being ripped apart. The cramps were sensational. It felt like I was riding a bucking bronco or like the dirt deep in the earth was cracking and splitting and being reborn through my very body. That was the day I realized how strong my physical body could be. We made it to the hospital emergency room in ten minutes, which included a stop at a nearby gas station when it felt like I was going to explode. As we stood in line, I felt the release of something thick and final in my womb, as tissue slid out from me.

I knew. With sickening finality, I knew.

Still, we said nothing about it. We let this woman go on ahead. She looked like she was very ill. We were polite in our desperation. Too naive to know that heartache could come to those so young. Death and loss still belonged to old people. Not to us. Not to newly cemented love and precious life growing inside of me. We did not yet know the harsh truth of life- that loss can happen to anyone, at any time.

We waited for about an hour in the waiting room, and then another hour in the examining room. I wore a hospital gown and my school bus socks, reading a book. He sat in a chair and we waited… and waited… and waited. Blood stained my thighs. When the doctor came in, he slipped out to call my parents.

I lay back, counted the cracks in the ceiling, tears pooling in my eyes. I blinked them fast away. Cold fingers pried me apart. “You had a miscarriage.” No emotion in the doctors voice. Words, words, more words. I felt myself crumble so I forced myself to look up, don’t cry, be strong. He showed me the clumpy, gray tissue that had once been my baby.

My baby.

My baby.

Gone.

When he came back in the room, I didn’t say anything. I just stared at him and he knew. He cried. Maybe we hugged. I don’t remember. My parents arrived. My dad, wearing that straw hat he used to wear a lot that year. My mom. They were frantic, angry.

I was put to sleep for the D&C. Before that, I was smiling. I was swallowing all of my hurt, so that I could be strong for the three sad faces looking at me. I remember looking down at those school bus socks. It hadn't hit me yet, what this loss was and how it would change my very core. I was still very much a child.

During the D&C I woke up during the procedure. Groggy and half asleep, but I felt the pain and it was the most intense pain I had ever experienced. It felt as if my every fiber was being sucked out of me. It didn’t last long,  but I gripped the hand of the person next to me- I don’t know if it was a nurse or a medical assistant- but I clung and squeezed and cried until it was over and the sedation took back over.

The next thing I remember is waking up in recovery. It was very, very quiet. There was no one around me. I made a decision. I remember it, in that grainy way we can recall an event from long ago. I decided to act fine. I didn’t want my hurt to fall and melt and drown anyone else. Perhaps I just didn’t know how to grieve yet. I wouldn’t know how to for years.I needed to be strong. That is all I knew at the moment.

Afterwards, I ate a quick dinner and fell fast asleep in my own bed. I didn't think about the fact that I had to go in to work the next day. I forgot until they called the house and my mom had to tell them what had happened.

The following day we went to Ocean Beach with our friends. I still wore the hospital bracelet. They didn’t believe we had lost the baby. I was forcing myself to move on, to just deal with it, not to think about it.

But we had.

The loss wouldn’t hit until later.

And when it did come, it engulfed me. I stayed quiet in my pain.

Stayed quiet when I saw my pregnant friends at school.

Stayed quiet when I drove to pick him up from school, imagining the car seat that was supposed to be in that car with me.

Stayed quiet when my pregnant cousin let me feel her growing stomach. We were due around the same time.

Stayed quiet when I started to skip classes, and sleep in my car. When I stopped connecting with my friends. Stopped caring about grades and school and going to college.

Stayed quiet when my dad accused me of doing drugs.

Stayed quiet when he cheated on me, broke up with me, pulled me back again.

Stayed quiet, stayed quiet, stayed quiet.

My grief was an ocean

And his mom had been right.

She had known what we hadn’t learned yet…

That life is never constant and change comes in one moment that rocks entire foundations.

That loss is an ugly thing, and that we were too young to handle that kind of monster.

That sometimes even love cannot be held still in the face of loss.

That hatred can be born just as quickly as love can.

That day I bled.

I bled my baby.

I bled my heart.

We lost. All 3 of us. Father, mother, child.

We lost each other and there was no one to tell us how to get past that.

Written on February 06, 2013

On My Mind

These are some photos I've seen recently on various social media sites & they all have got me thinking, or praying, or smirking in agreement.
Fibromyalgia is a moody booger, and with these returning migraines comes dizziness, mood swings, and irritability (among other things). It's all I can stand to be around even one other human being, let alone several at a time.
I'm so sick of it. Sick of sickness. Sick of the fast sinking feeling that comes over me when I am around motion, conversation, trying in vain to ignore pain, pain everywhere, every second of every day.
It's exhausting, and piled on top of literal sleepy time exhaustion, it's just too much.
So I feverishly paw through scripture, clinging to words, underlining, straining forward even when I don't feel I can stand even one more moment like this, ONLY because God carries me through each of those grueling minutes.
When I say that I am not trying to sound oh so spiritual. I mean to say, very literally, that I WOULD give up if not for God. I do not have the strength to endure Fibromyalgia without Jesus. True story. Probably the truest story I have ever told in my life. Perhaps there are some who power on through without Him, but I am
not one of those people. I have wanted this to be over... Not life exactly. I've not been suicidal, but I could be if I didn't know that God is with me. It's that brutal. I've begged to die sometimes. I've agonized and lamented and pleaded to be free from this life of severe limitation & forever sickness. It's not for the faint of heart. Or perhaps it is, and in that faint, bleary, I just want to give up, that's when God steps in. The cliche Footprints saying hung on walls and plastered on journals, and calendars everywhere.
He carries me.
Every single time I want to close my eyes, fade away, not feel this burden in my very skin & bone, and yes, even the soul after a while (the human spirit can only sustain so much)- that is when I am carried.
It comes as whispers to my heart, shared promises in the Bible, silly gifs on websites, confidences with soul sisters, flowers growing among weeds, the way the fading sunlight hits the trees...
Carried, every single day.
I used to think I was so strong physically. I lifted heavy things, I worked hard from the age of 16. I endured a miscarriage, a near cervical cancer scare, and many other hardships as a young woman. But it took this monster, this Fibromyalgia hell, to show me that my true strength comes only from the source of all of my life's breath.
Jesus.
Alone I fight for awhile. I breathe hard and deep and flail around, but it is only when I draw from Him, put my thirsty limbs and heart and mouth on refreshing holy water, and gulp deep, that I understand the depth and reality of genuine strength.
And that is what gets me out of bed every single day. Gets me into the shower where the hot water wakes me alive again.
I am lucky.
It would be very easy to just drown in this miserable prison. And sometimes I wallow. Sometimes I cry and have an attitude and hate my limitations. That's real. That's sickness.
So, I am much more grateful on the days where living comes just a bit easier.
And I close my so tired eyes, and I beg for this thirst to be quenched daily, that I won't run dry, that I won't stop seeking tomorrow.
And He comes to me, tenderly holds His cup of life to my sagging spirit, and urges: "drink."
And so I do.

Let it Snow!

It's been a bear of a time (every time I use that phrase I think of Dan Sierra) lately with Fibro. Then again, when is it ever not a bear?
I've felt particularly grumpy about it. More itchy, more sleepy, more achy, more headache-y, more agitated to be in this vessel that is literally never without pain. Stabbing or aching or spasming or bruise-y or invisible sunburn-y. All the variations, each day a surprise of what hurts and how is my body going to attack itself today (they-whoever they are- need to realize and declare that Fibro IS autoimmune already!), and how exhausted am I going to be. Fibro doesn't care if I want to catch a movie, or ride my bike. It's not like the normals- they get sick, rest, pop back the NyQuil, put life on pause right quick until its back to the regular. Nope, with the Fibro life you've got to do the laundry, ride the bike, feed yourself, shower, get the groceries, and basically do what ya gotta do anyway. Of course rest is essential, and we learn to say no, and the guilt eases after a good long while, but we still have to function in society even though we wish we could just live in a sound proof bubble already!
It would definitely be easier that way. Personally I have been having an increasingly more difficult time being around other humans. More than ever. It's always been hard, but now it is downright miserable. My lifestyle is already extremely modified since I moved to NC, but as the months race by, Fibro intensifies. Sometimes I have no idea how I can keep living this way. We all make adjustments with this crazy sickness, and a lot of times it feels downright impossible & possibly like we are going a bit mad. Even watching television is becoming a major deal. The commercials have been muted for the last few years, but now sometimes I cannot even handle it at all.
It's a strange way to live. Lately my eyes have been super irritated. Itchy, aggravated. I can wear my contacts for brief snippets before the eyeballs beg for relief, even wearing glasses is uncomfortable. The migraines have been making their cameos.
Like I said, it's been more brutal. I've been thinking about how my body is directly affected by everything that goes into it. Not merely food, but the pollution and toxins that get in by way of conversation, reading material, social media, movies, television. It all matters. So in that, I am trying to be more intentional about what is feeding my spirit. It's challenging. There sure are a lot of distractions, but with this Fibro life I don't have much of a choice. My body is in constant distress, and I want to do what I can to make sure my emotions are not in the same state of alarm. Of course, to be fair to myself, I must also hold firm to the knowledge that Fibro IS legitimate & sometimes I can make many efforts to stay "in the clear" and still not be feeling emotionally okay. It's incredibly difficult to stay optimistic and good natured with this kind of beast on your back all the time. We fight like the dickens to smile and think positively and look UP. Most people I encounter get a mad case of the grumpies when they are ill, so I think those of us with chronic illnesses do a darn fine job of enduring and thriving despite the tight grip of unceasing sickness hot on
our heels every minute of every single day.
I might sound crazy, but I am proud to be amongst this group of soldiers. These strong warriors who look sickness in the face, feel the hot, stinky hell fire breath of doom and torture (Chinese water torture has to be a sister to Fibro!) and still find time to laugh and read good books and share meal time with their families.
I'm not talking about those who pretend they are fine. Not talking about those who are unwilling to admit how hard this sickness is. I'm talking about my precious sister friends who KNOW how monstrous this lifestyle is, but who fight hard every day to live, despite how much it wants to tear us down, knees scrapping the pavement, palms bloody from the fall.
These are the people I jump to my feet for, hands slapping together in enthusiastic applause. You give me courage! You give me hope! You make me remember, when in the din of my own despair, that we can do this! We ARE doing this!
So I thank you, again.
During this time, when my body is the worst enemy it's ever been, when the cold air wreaks havoc every, EVERYwhere (truly we must be human barometers), when I feel I could literally slumber for whole days on end... I think of you, my spiffy, STRONG friends, and I gather strength from your stories, from your agonies texted and whispered and shared in slivers.
I remember, I am not alone, and I can do this, because YOU are, and we ARE, and we will.
No one understands our pain, even the darling ones who honestly, sincerely try. But they don't have to.
Because I understand, you understand, we understand, and one of these days, oh dear God please, one of these days, maybe there will be more answers, and perhaps even a cure, or at least a pill instead of dozens that don't really work anyway.
Here's to hope.
Love,
Janet

"I know, more surely than I know anything, that any pang of healing or forgiveness or goodness I have ever felt comes solely from the grace of God."
-Philip Yancey

Choice

I've decided not to go to that worship night in Wilmington. I've known in my gut that it would be a bad choice to go but rebellion made me think it was an option. I COULD go but it's not in the best interest with Fibro.
I convinced myself it was going to be some polite little affair, but the reality is that it would be hundreds of people in one building, bright lights like a concert, and loud music. In this case choosing not to go takes more effort and strength (A reminded me). To drive 2 hours, go to a concert (cause lets not mince words, that's what it would be), stay overnight, and drive 2 hours home is not a smart choice.
I feel sad at realizing yet again another "loss" and thing that Fibro makes unenjoyable, but I feel kinda proud too.
It makes me feel like I'm taking care of myself better.
Most people without Fibro (and even some that do) would tell me it would be good to go. I agree. It really would. However, it is even better NOT to go. This shows that all of my self work and hard nights have transformed into my ability to recognize my very real sickness and limitations. It means I have reached a point where, yes, a part of me still rebels against the reality of having a Neuro-Immune illness, but I now grasp how vital it is to pay attention to what having Fibromyalgia really means in my life.
I CAN go to a concert, but since my nervous system is already overloaded, I will not be taking care of myself in doing so.I can barely stand the noise of the television and am NEVER around others without ear plugs, and cannot tolerate even going to church regularly, so a concert would just be asking for the ramifications. Perhaps there are some of you that can do these things with no problem. And while I applaud you, I'm not you. I DO get exhausted easily. Most of the time for no reason. I do stay home 95% of the time. I require tons of quiet and extremely limited activity.
This is not defeatist. I don't feel bad for myself. Sure, I'm disappointed and angry that I have this beastly condition, however, I am aware that this is a HUGE accomplishment! A year ago I probably would have went anyway, at the pressure from both fibro and non-fibro friends. I would have went against my gut and tried to fit myself neatly into the world that I honestly don't belong in anymore.
This is a milestone and I'm too grateful not to share.
:)

My Soul Sings

Sometimes the presence of Jesus is so sweet that it feels as though one earthly body cannot hold it all in. I suppose that is the point. It's not meant to be held in, but rather to pour so richly in us that we cannot help but spill out. Not us, but Him.
It makes me so ecstatically overwhelmed.
Grace. Kindness. Joy.
Not Janet, but JESUS.
Doesn't that sound beautiful rolling off the tongue?
Jesus.

Today I got up after these last few days of that kind of pain in my hip/back/leg that begs to be ripped from my body, with the purpose of going somewhere. Nowhere fancy, just the library or to look for Snapple at a gas station. Sometimes with Fibro (okay, honestly, ALL the time) these simple outings are extravaganzas. Like having an off campus day from a hospital of let out of the cage of a prison cell. Except my prison comes with me wherever I go, the boundary line just moves around. I took a shower
(I am so in love with hot showers lately. It's my crush. It soothes this pain filled body so good.) and decided to get out into the sunshine.

In the car I put on my current favorite worship album and felt the deliciousness of the day come over me. I sang to Jesus and smiled goofy to myself, thinking deeply about how truly wonderful He is. How generous and marvelous and sweet. He is REALLY the sweetest. No one knows how to woo like Jesus does.

My first stop was to the local thrift shop. I love to peruse the collection of books and usually find some treasures for my own library. There wasn't really anything I wanted until I got to the last row. That was when I spotted it... Could it be? The very same book I had heard about a month ago? The one I desperately wanted to order but could not afford? The one the library here does not carry so I had to put it on hold in CA for my Auntie to pick up and ship to me?
Yes, yes it was!
This is not a common book. The chances of the thrift store carrying it was slim to none, and yet there it was!
I carried my new treasure to the check out and paid $1.
I smile now as I type this. Once more I am reminded of how much God is in the details. He didn't have to put that book there, but He did. His romance for me today was in the brilliant blue sunshine of the big, big sky and a beautiful book I was aching to read. It was in the basket of library books and the magazines I got to leaf through, in the random guy who told me I am pretty, and in the strawberry lemonade I guzzled cold.
Some days the hurting is far more then physical. Endless pain and fatigue starts to cloud the soul, until it clogs. It gets dark and nothing seems enjoyable. It's all one can do to keep going. So when the beauty starts to tug hard at my heels, begging "see me!" I am hungry for more. Instantly amazed at what I am missing when my eyes are downcast. Those bleak days make these shiny ones so much more cherished. It restores HOPE. And that hope fuels me through the cloudy days when they slam into me again, leaving me breathless and overwhelmed.
His love, it IS extravagant. Wildly so.
The pain is still here. Surely my heating pad will be pressed against my hip and thigh in a matter of minutes, but my soul... My soul it soars and sings and rests all at once. I am loved by God. I am dazzled by God. I am lost in love and wanting more still.
Thank you for today, my Jesus.
Thank you for every day.

The theme today seems completely about the soul.

From the devotionals this morning affirming what God was already brewing up in my heart about self-condemnation and bitterness and fear, to this online sermon I just listened to... It's all exactly, perfectly relevant to what God is doing in my life at this very minute. I am in awe once again at how much He is involved in the complete transformation of our lives. I pray I never stop learning that. That I will never feel as though I have arrived and sit on some Christian pedestal.

I am not able to go to church every week, and I find great joy that most churches offer online services. Thank you on behalf of all of us who are physically unable to attend. There are a couple of good churches I have visited here, but I still consider TFH my home church.

Jason Upton - Faith

This is an old favorite and very much needed today.

The last couple of days I reached out to two old friends of mine and asked for prayer. I am so grateful for these two (Theresa and Melinda, that's you!). For always being prayerful, for loving me and pushing me to Jesus no matter what. Thank you for being in my life. Thank you for being my soul sisters through and through. I also shared with my closest friends in my support group online and feel relief once again for the realization that I am certainly not alone in my Fibro journey. To know there are others going through the same up and down coaster makes a world of difference.

I've also been writing in my journal much, much more than usual (it usually takes about 2 months to fill one journal, but I shot through a brand new one I got for Christmas that I just started this month), and my psyche is getting a major workout, as the dreams have returned, as well as the night sweats. I don't mind so much, because I know my mind is working things out. Dreams about huge bugs or being lost or having too much stuff, or church things. All very detailed, mostly involving anxiety, all very much a part of the process.

I've felt very angry and sad as of late, and a large chunk of that is because I was not walking in grace. Because of that I was not showing grace in my life to the people near to me. I was a walking wound, poisoning the atmosphere around me as I oozed bitterness, discontent, and depression. I am not ashamed of that. This too is part of the process. A part of being a Christian is being able to be transparent with my weaknesses and struggles. I am a very imperfect person, who makes mistake after mistake. To pretend as Christians, that we have it all together is very wrong and very unbiblical. The reason we need a Savior is because we are full of sin. I think we forget that sometimes, especially when we've been walking with Jesus for a long time.

In this pitfall I have carried feelings of intense helplessness. Honestly, I wanted to give up. As in, not even try at all anymore. Try to live like this, try to make the best of this sickness filled life. I just wanted out.

So of course (my eyes fill with tears galore here) my Jesus, who absolutely, 100% loves me, came immediately to meet with me as soon as I cried out. There were reminders of His faithfulness, His love, His presence in my life. Little things, but declarations of our love relationship, and it was like a raft out at sea.

I started to tread water again, instead of sinking. I took hold of that raft.

I received two devotional emails this morning that spoke DIRECTLY to my heart:

http://www.aholyexperience.com/2013/01/life-plan-day-planner-sanity-manifesto-printable/

http://www.wisdomhunters.com/2013/01/come-to-me/

I went back to sleep, and when I woke up I got down on the floor in front of the heater and started to journal again. God told me to put on a specific song (http://youtu.be/ZkMKzXshThc) and to just lay out before him. During this time He gave me the image of laying at his feet and just letting my hair wrap all over them. I was clinging to His leg and just letting Him love on me. He showed me to write all of my recent sins and struggles on a piece of paper, and then afterward to simply worship Him in song. Then I took communion and burned up the paper.

That's it. Just like that.

Grace.
Love.
The reminder that I am loved, that I am covered, that He is still present.

My heart is beyond grateful and even though this doesn't make my mood instantly sunshine and rainbows, it does bring me back into alignment with the God of the universe.

The God who loves me, even in my failures.

There are some personal things that He is asking me to surrender and change, and I look forward to seeing how this barren place is made into something beautiful.

To Him be the glory, forever and ever.

Please do keep me in your prayers, as this is a constant struggle with Fibromyalgia. Thank you so much.

The Really Real

*Disclaimer: This is not a Peppy Patty post. This is from my journal and it's not going to lift you up.I'm not wanting advice or comfort or someone's super inspiring story. I'm sharing for those of you are also battling sickness and for those who want to know what I feel.*

Facts:

I AM EXHAUSTED.

I am tired of being sick.

I cannot handle this anymore.

All of my joy is being sapped.

Seriously, the knowledge of many more days like this is too, too much. I am not happy. I am so angry and easily moody. ALL relationships take too much effort. I am so drained of life. I wasn’t this way before Fibro, but after all this time, I have hit a limit. I cannot handle this.

God, are you listening?

I am so miserable. I can’t stand just sitting here waiting for the next, brief version of a good day. I am losing hope. Losing perspective. I do not want to live like this. ANY request from anyone floods me with rage.

I can barely function. I have to wake up every single day, endure a shower, wash clothes, lift a fork to feed myself, try to distract with books or blogs or television, and make it through… only to go to bed at the end of it all, to realize the next day is just going to be a varying shade of today.

This is no way to live. Not at all.

I don’t feel like being a poster child for Fibro wellness today. I’m not some motivational speaker. I have clung to optimism for the last 4 years. When I was kind of sick, then when I was really sick… bleeding, aching, infection after infection sick… and later when I was sick but finally diagnosed… I tried to stay hopeful when I moved cross country, when I had to leave Mylie… I have stayed hopeful through all of the mindless paperwork, all of the rude doctors, all of the crap put in my body.

And now…

Now I just feel hopeless. There were goals, I suppose. Goal one was getting diagnosed. Goal two was finding a doctor to treat me. Goal three was starting treatment. Goal 4 was recovering after the move. Goal 5 was facing my diseases and letting go of my old life. That season was rough, bleak, and absolutely dark. Goal six was finding a doctor here. Goal seven was learning to “manage” my particular sicknesses and work with it. I started another new medication and began to exercise. Life started to have more color during the 5th and 7th goals. I went out more. I laughed more. I found my center again. I felt like life was full of promise. And then I crashed around Christmas. So much stress, but wrapped up as Christmas shopping, a spa day (meant to be relaxing), Christmas and New Years in itself… and everything else that was an activity or a hindrance to my fragile “managed” state.

I muse that perhaps it was getting slightly “managed,” and realizing that was about a good as it was going to get,then being knocked on my behind soon after that, led to realizing that being “managed” means nothing.

ABSOLUTELY NOTHING.

To get “managed” meant a few good months, but still having to endure pain and fatigue every damn day. It meant that “managed” was just a way to pass the time, because this disease is vicious and rude and will rob us whenever it feels like it. Rape of the mind, body, and soul. We do what we can- diet, exercise, meds, rest… but it doesn’t matter really. It’s just passing the time. There is NOTHING that gives us our health back. No amount of exercise allows us to be normal again. Hours of sleep does not replenish. The body is literally under assault all day long.

Chew on that.

Really chew on that.

This is torture.

It’s excruciating.

“Like being nailed to a cross is excruciating?”

Wow.

I hear you, Jesus.

And no, not nearly as excruciating as dying on that cross.

Not even close.

But Jesus?

I have no more grace or dignity with these viruses and conditions sucking the life out of my bones. I have nothing to give and I’m losing the drive to stick it out. I’m angry. I feel the losses every day. Fibromyalgia mocks me. I don’t recognize myself in my behaviors anymore. I’m sullen and sarcastic, morose and private, believing again that I do not deserve to be loved. I’ve said too many unkind things, exhibited too many harsh tantrums. I’ve become a shadow. I covet, I yearn, I grieve. I even hate sometimes. How can I be lovable? How can YOU, God, love me? I cannot forgive myself. I cannot let your blood wash away my harshness. I don’t deserve it.

“Grace is free.”

I want to have this illuminating moment where I just accept that grace anew… not the grace of 2001, or 2005, or 2009, or even the grace of yesterday… but grace for now. Grace for this moment. It seems so unattainable.

All I feel is the tight cord of misery as my bones ache and the exhaustion sucks me absolutely dry.

How?

Having Fibromyalgia just plumb feels terrible.

Rest, rest, rest. Not so easy to do after a week... three weeks... a month... a year... three...

This is life. On the daily. No pause. Benadryl, Nyquil, Sudafed, etc. does not work for us. EVER.

Someone lamented to me recently about a bout with the flu. How hard it was to walk through the cold, how they bought all these over the counter meds to get better, just how very, very miserable they were. All I could think about was,"at least your flu went away." I didn't say that, of course. I commiserated. I tried to be empathetic. It's hard though. Anyone who says otherwise might be fibbing a little.

See, this "flu" we've got will not go away in a few days... or even in a week or two. These aching, throbbing, weak limbs will not start to feel strong again in due time. This "pull me to the floor, I'm so exhausted" sensation will not be gone soon.

It's here to stay.

We just do what we need to do anyway. We have no choice. We either give in to the misery, get depressed, and feel like the world is out of reach (This happens regularly. The doldrums come with the territory. Take your recent flu story and utter misery and remember how much you moaned and wanted to be left alone.), ignore the very real physical limitations we now live with and end up crashing & burning hard, or find the silver linings wherever we can because it really is THIS hard to be this sick, and we try to maintain some kind of balance between resting and doing what we actually need to do- take care of our children, cleanse ourselves, wash clothes, interact with the people we live with even when our muscles and minds scream, beg, plead, demand bed only please!

It's a nightmare.

I've been in a particularly brutal season, after a few brief months of sunlight of the soul. After all the chaos and denial... the grueling battle between the onslaught of sickness and processing it, I finally felt somewhat managed. But managing Fibro is not an easy feat. Not at all. One tip too far in one direction can cause a severe backlash.

So, I'm still learning. Still getting up, falling down, getting up again. It's times like this that make me want to isolate. I don't feel a part of the world around me. I feel stuck. Rapunzel in her tower. All sadness or displeasure swims to the surface and makes the eyes all grainy. I look for a flower, a cool breeze caressing my skin, the cheerful sound of the child I love and miss, a really good book. I look for hope and try to cling on because it starts to feel very bleak.

Is this real?
Am I crazy?
Is it really possible to feel this much pain?
Surely this is a dream!


Those are some of the thoughts we go through. When the pain is so bad we beg to have the limb chopped off, when the fatigue is so pressing we cannot even think a single coherent thought, when we realize that tomorrow we will have to go through the exact same thing...

Our own private little obstacle course... except ours is made of other peoples voices, televisions in the background, lifting a floofy to wash our skin, getting dressed- and ouch! It really feels like a sunburn! I can't wear anything! My skin is BURNING!-, the hum of the fridge, the water making a wild song as it cleans the dishes, putting on shoes- wait, why did I walk in here?- and it goes on and on and on.

We live for the "good" days, which are truly only passable days. We find our happy and we try to remember it when the sickness is sucking us dry. Bone dry.

We are survivors. We are lucky. We could give in so easily. It's so excruciating and it never stops. The physical pain, but the emotional pain too. The being judged, dismissed, criticized. The way our self-esteem takes a dive and lifts and dives once more, based on how sick we feel that day. We keep climbing up. We are the lone survivor at the end of the horror movie. We are the ones who will always keep you covered. We will not back down. We will not surrender our lives to sickness, even though it damn near gets us too.

We are messy, imperfect, frail and tough together. We cry, we laugh, we scream, we suffer.

We are dreaming in miracles even when we don't know we are.

Someday the world will know the truth about our sickness. They will discover what causes it, discover new ways to treat us, validate all of this agony. We will be more than a Lyrica commercial, more than a magazine article, more than someone's story of Fibromyalgia.

We are writing the whole book with our lives.

In our opening of the eyeballs each morning, in the comforting words we offer one another, in the lifting of the milk carton, in the doctors' offices, in the prejudice against our rosy cheeked glow- "you don't look sick"- in our whole lives...

we are telling the tale of how Fibromyalgia was discovered and understood.

Let us dream.

Restless arms & legs have come back to keep me awake these last two nights. It leaves me to wonder why Gabapentin is not doing its job.
I've decided to up from two pills a day to three, just to see if there is a difference.
It's been torture, to say the least.
After a frantic bout of continuously being pulled from slumber, and the tight feeling of suffocation in my bones and insides (that's the best way to describe it), I remembered I had this cream (thanks mom!) and eagerly slathered it all over my legs and arms.

I hope it goes away so soon.
Truthfully, it is dreadful.

I'm still supremely exhausted and feeling really ill. Oh winter, how I love you, but Fibromyalgia certainly does not.

On a random note, I've decided to take a break from a couple of social media sites, and from reading particular blogs. I am hesitant to post that information here, but I feel it will help me with accountability. I'm not going to be gone long, and not from every site, but there are a few places in the online world that have been hindering me as of late. This is not a new struggle, but I know that I need some time away to be with God in a deeper way and to stop feeding my mind and spirit with all of the good and bad things available online. Last night I was praying about how much time to fast from these sites and I kept coming back to 7 days. I opened my Bible and what do you know? My eyes fell on to these verses about healing, Leprosy (just the other day I was musing about how Fibro seems like the modern day Leprosy... except instead of the nerves not working, we struggle with overactive nerves), and about 7 days of quarantine.

I hear you, God. I hear you.

I believe I actually gasped out loud in delight. I love, love, love how He never fails to surprise me.

So 7 days, starting today.

I won't publicly announce which sites, because I believe that is between me and God. But it's happening.

;)