Losing It

Post Soundtrack:  Beyond This Moment by Patrick O'Hearn

There are many small ways we define ourselves.  Even those of us who do not put our self-worth into outward things can be affected by the loss of significant details of our physical appearance.  For me, it was, and is, I suppose, my hair.  Perhaps it was a touch of vanity, but I tended to think of myself as having long hair.  It was no great glory, nothing that anyone else but my husband and perhaps my mother would have admired, but it was mine.  It was me.

Lupus changes everything.

Hair loss was one of the very first symptoms I noticed so long ago.  When your hair is to your waist, you notice when more of it comes out than is normal, I can tell you for certain.  But I came to accept it.  For years, the amount of hair I lost in the shower stayed the same.  But when things started getting worse, so did the hair loss.  I was starting to find it on my pillow when I laid down every night.  It accumulated in corners of the bathroom floor.

And then I started taking medicines like prednisone and methotrexate.

Needless to say, it got worse.  I could run my fingers through my hair and come away with five or six hairs caught in my open fingers.  If I kept finger-combing, I'd get a handful eventually.  When I brushed my long, long hair, I would end up with a swoop of hair trailing from my brush.  You could now trace my movements by looking for my hair, for it was sure to be anywhere I had gone.

It was all so demeaning.  It was undeniably distressing.  This part of myself was betraying me, leaving me in the lurch, quite literally.  It hurt, like an emotional wound from someone's hurtful words... but there was no one to blame.  There was only Lupus to be angry at, and that was rather a fruitless use of emotional energy.

And then I began to notice a thinning patch, right where my long hair parted.

That really was the last straw.  Though I defined myself by my long hair, it was time to brave a change.  At first, as I considered getting my hair cut, it only added to the sense of shame and dishonor of having to take such drastic measures.  But I had the reassurance of being reasonably certain that, when cut short, my very straight hair was going to develop a wave.  My mother had cut her hair very short, and found a gentle curl as a result.  I had hopes for the same, and such hope (for one who had always wished for wavy hair) was one of the few things that kept me from despair.

It was cut shorter than I'd had it since being a toddler.  It ended up at my jawline, but wonderfully layered and, tada, CURLY!  Well, softly curly.  No real curls, but definite body and ripples.  It felt good!

It took some time to stop seeing myself as woman-with-long-hair.  It took some time to adjust to feeling it tickle my neck.  But I was pleased with it, overall.

What I find most strange about it all, though, is the sense of self-definition.  I now prefer to define myself by my perky, curly do, rather than what it looks like when I go one too many months without getting it cut again.  I have adjusted my mental image of myself to this new norm.  It doesn't prevent the hair from continuing to fall out, of course, but it does hel me feel some better about it.  Thinning spots can be covered with the new-found body my shortened hair possesses.  I don't heavily brush my hair anymore (ruins the curls), so I don't get swaths of evidence in my brush.  I do still find it on my pillow, and all over the bathroom floor, and in the shower drain, and on my clothes... but it is not so impactful now, being shorter and less noticeable.

So my sense of self has been rescued, a demoralizing situation turned around.  Part of me wonders what will be next.  Currently I am considering getting a handicapped placard for our car.  Yup, you bet, that's making me feel very self-conscious and demoralized.  However, I am coming to realize that it probably is a good idea, and would help me take better care of myself.  One hurdle down, another to conquer.

It's astonishing how illness can force not just your life, but how you think of yourself, inside and out, to change so dramatically.  No wonder I've heard so many facing Lupus to feel they are losing themselves to the disease.  I'm doing my best to simply go with the flow, and learn new ways to be the new me.

Never Alone

Post Soundtrack:  Home by Phillip Phillips

This is something I posted elsewhere not long ago.  I thought it would be an interesting counterpoint to my other post today.


It is so surreal, examining what has become of my life. I don't think anyone effectively plans for who they will become and what will happen as time marches on. Most surreal of late for me, of course, is being diagnosed with Lupus. It's a strange idea to attribute to one's self. I've known and been close to folks with serious illnesses. Cancer, Lupus, Goodpasture's, MS, diabetes, and other life-threatening medical problems. Though it makes my heart ache to see them struggle, it does not surprise me to have my life touched by such things in that way. The more people you love and grow close to, the more likely these maladies will crop up. However, it is human nature to never expect it to happen to you. It comes as a shock, no matter how long or how much it was suspected, no matter how much research and info-gathering one has done on the disease. It still tends to feel rather earth-shattering.

Adjusting to this new awareness of one's physical self is complicated, involving grief, hope, worry, resignation, and in the end acceptance and contentment. At least that is how God intended us to work through it, relying and trusting in him to carry us through. That is not to say that emotional upheavals are somehow wrong to experience on this long road of dealing with disease. I firmly believe in allowing myself room to feel, to react to the unpleasantness and fear. But the strength I ask for in prayer is to overcome those feelings, and to press on renewed in spirit, if not in body. I am blessed to have a husband who helps me through this process, who holds me when I cry, and who walks beside me when I am ready to tackle life again. Between these two, my husband and my Lord, I know I will prevail, regardless of the physical outcome.

Am I afraid? Oh yes. But am I without hope? Most certainly not. This world is not my home, and if I must endure pain and sickness while here, I can look forward to a rest in heaven where such things cannot touch me any longer, so long as I keep my focus on what is truly important in this life. Faith, obedience, and working hard to do God's will. That is my comfort, my hope, and the key to the endurance I seek.

I write this so that others might have a peek into the struggle that goes on inside the heart of one faced with life-long disease. So that those struggling can be reminded of that which we are reaching for, beyond the scope of this physical body. But I also write this so I can see it myself, be reminded myself, and gather that necessary strength to get through the bad days. I am not alone, and I never will be.

Maddening Success

Post Soundtrack:  Out of Exile by Audioslave

Lupus is terribly confusing and frustrating.  It rarely makes sense, never follows a set pattern, and leaves me feeling much more out of control than I'd care to.  Currently my frustration is about success where it seems there should be none.  The trouble with this success, you see, is that it leaves me waiting for the moment when it stops being successful, which is an inevitability.

Back in November, when things seemed to have gone so well, my rheumy decided to try and work me off of the prednisone.  Fair enough, I know it isn't good for me.  I've been blessed with few to nil side-affects, but if it was possible to remove the prednisone, I was more than happy to do so.

Only problem was, it didn't work.  So he increased my methotrexate dose from six to eight.  Tried again, with similar results.  The first attempt lasted six days, the second lasted eight.  The next appointment is when he declared it was lupus, and he also increased my MTX dose to ten.  This time he asked me to wait a month before trying to reduce the prednisone to one and a half pills a day.  I wonder if he knew what was going to happen next.

I suspect the impact of being finally diagnosed threw me into a flare.  I haven't yet figured out how to tell what is and is not a flare, but it makes sense this time.  For a full month, I was in misery.  I had my malar rash daily, I took my ibuprofen daily.  It was not fun.  It filled me with fear concerning how bad things were getting.  Then came the point where I was supposed to reduce my prednisone.

Like magic, my problems faded just before I started the reduced dose.  Determined to try the one-and-a-half dose, I was nonetheless convinced it would fail miserably.  It didn't.

I am now on day six of less prednisone, and it still seems to be working.  I suppose I should be celebrating, but all I feel is a frustrated anger.  Why couldn't it have spared me the last month?  Why did the flare have to fade now?  I feel like I'm being set up with a false result, given hope where there isn't any.  Perhaps it is a bit defeatist, but who could blame me?  There is no way this can stay successful when you consider the last month.  It's impossible!  But then again, if it does continue to work, maybe it'll open up more options for what can be done.

Regardless, I'm so sick and tired of not knowing.  Of being unable to predict.  Can I go out to lunch next week?  Maybe!  Maybe not!  Will I be up to grocery shopping tomorrow?  I hope so!  All I have are hopes, ifs, maybes, and outright no-ideas.  It's maddening.  It's unfair.  But unfortunately for me and the many others who suffer from it... it's Lupus.

Sun-kissed

Post Soundtrack: Lights (Bassnectar Remix) by Ellie Goulding

Star in the heavens
Flickering brightly
Seductive light
With a painful touch
Ever beckoning
Promising life
Reminding of death

'Touching my face
For all to see
And to wonder
Why I blush
What heats my soul

Only you and I know
You are not my demise
I am my own.

My Inner Demons

Post Soundtrack:  Demons by Imagine Dragons

For me, music is very important.  It is the blood of my daily life, the current that I can trace through my years.  Each part of my life has accompanying songs, due to repetition as well as how each snog connects to my emotions at the time.  This is why I've connected this blog with music so strongly.  My music often reflects my mood or reveals something about my deeper feelings.  The following are thoughts I wrote down some time ago concerning the song "Demons" by Imagine Dragons.  it still speaks very strongly to me, and probably always will.

While not all the lyrics click with me, certain portions express ideas that resonate very deeply with me right now.  Here are the pertinent portions and their meanings to me.

"I want to hide the truth
I want to shelter you
But with the beast inside
There's nowhere we can hide"

This section has several personal truths in it.  Most acutely, I wish I could hide my pain from my friends and family, both the physical pain as well as the emotional pain.  I'd rather spare the the shared hurt, if I could.  I would rather my son not have to flinch from touching me sometimes out of fear of hurting me.  It cuts me to know that I'm not the only one who has to deal with Lupus.  My family does too, no matter how much I might wish it otherwise.

The use of the word "beast" amuses me.  I have played World of Warcraft for years now, and I am known there as Beast or Beastie.  However, it also applies very well to describing my Lupus, which is contained inside of me, impossible to escape.  It is a creature of violence, a thing of cruelty, without a face to scream at or a being to blame.  I can't run, I can't hide, for it is always with me.

"When you feel my heat
Look into my eyes
It's where my demons hide
It's where my demons hide
Don't get too close
It's dark inside
It's where my demons hide
It's where my demons hide"

This particularly strikes a chord with me, as heat is often what I feel when my hands are hurting.  Sometimes other joints seem to get hot as well, but it is most notable in my hands.  It can be so marked that even others can feel that the backs of my hands, along my knuckles, is significantly warmer than it should be.  Also applicable now is the heat from my malar rash, warming my cheeks and making them pink.

Although I try to hide it much of the time, when I am truly in pain, I'm relatively certain that anyone paying attention can see it in my eyes.  For me, my demons are not the darker, uglier part of myself.  My demons are my pain and fear and despair that plague me.  Those feelings run much deeper than even those who know me well understand.  I don't believe they are prepared to deal with just how strong and fierce those feelings can get sometimes.  I have felt the desire to warn them away from seeking too closely to find out how I'm doing.  They aren't prepared for me to unload my distresses, worries, anger, frustrations, etc., on them.  I'm learning better as time passes how to put up friendly shields, how to answer honestly that I'm okay, or alright, without going into details or burdening them with too much of the truth.  I know they'd rather not deal with my demons.  Even I don't want to deal with them, so it's understandable and entirely forgivable.

"Don't want to let you down
Though I am hell bound
Though this is all for you
Don't want to hide the truth"

Much of my enduring is for the sake of my family.  I hang on for my husband, for my son.  Without them I fear that I'd have given up before now.  I strive to overcome because I don't want to drag them down too when it becomes too much.  At the same time, though, I don't want to hide myself from them.  I rely upon my connection with both of them to help keep me sane and hopeful, to help see my way through.  I've tried once or twice to hide my pain, unhappiness, and despair from my husband.  It never works, and often makes things worse.  I've learned that I have to share it all, even the parts that are difficult to admit, both to benefit myself and my family.  It helps me to stay strong, and it helps us as a family remain a coherent, united whole.

"Your eyes, they shine so bright
I want to save their light
I can't escape this now
Unless you show me how"

My husband and my son both bring light into the darkness I find myself in.  I may not be able to escape the Lupus entirely, but through their love and efforts I don't have to be lost in the pain and fear.  I have their encouragement, their love, their daily joys and sorrows to remind me what life is about, what is worth living for.  It draws me away from the more morbid thoughts on living with Lupus.  Their help, their sheer existence, is something I simply cannot live without now.  (As if I ever could have before all this!)

So those are the bits of the song that chime with me, resonating with my darker feelings, but also addressing my hopes and helps.  There are days when this song circles around in my head, the words and notes entwining with my emotions and thoughts.  Sometimes I cry to it, sometimes I sing defiantly with it, and sometimes I just listen.  It depends on my mood, my state of mind, and on h ow much I have been hurting that day.  In its own way, it brings me a small measure of comfort and peace to let some of those feelings out in such a safe way.

It isn't just a song to me.  It is an outlet, an expression, a way to gain strength and a way to seek comfort.  There are many such songs, some with lyrics and some without.  I'll share them as time goes on.  For now, my demons are quieting in the face of blogging.  Perhaps this too will help me find a measure of peace.

In the Beginning...

Post Soundtrack:  November Rain by Guns N Roses

It seems I have found something worth blogging about.  I never figured myself to be the sort to blog my thoughts and feelings, but this struggle I have begun is something I am not alone in.  Perhaps some of us have many of the same thoughts and feelings, but are afraid to speak them out loud.  Sometimes these things are painful, or shaming, or just expressing them makes them almost too real to deal with.  It's a harsh thing, having to come to terms with life with Lupus.  We don't have to feel isolated, and this is my small attempt to share my experience, so others won't feel so alone.

So first I will tell you my story of how I came to be diagnosed.

I honestly am not sure how far back my symptoms truly go.  I can tell you when I began to suspect that something was wrong, however.  Thirteen years ago, sometime after my son was born, I noticed two things that were very different than they used to be.  Firstly was my hair loss.  I had very long hair, usually somewhere around the middle of my back, occasionally as long as to my tailbone.  All my life I'd had long hair, but all of a sudden there was a lot more hair on the shower wall.  Yes, it's an odd habit, but due to how long my hair was, I tended to gather what loose hair I got tangled in my fingers when washing it, and stick it to the shower wall until I was done.  It used to be just a few strands, no big deal.  But it had changed to being more like what you'd expect from a hairbrush.  It made me frown, but didn't really alarm me all that much.

Combined with my second problem, though, I was concerned.  You see, despite being happy to be a mother, I found myself absolutely exhausted and sleeping through the afternoons.  I know that likely some of you will suggest post-partum problems, but this did not fade.  If anything, it got worse as my son got older.  I felt horribly guilty for dozing on the couch when he was old enough to crawl or cruise.  One day, after he learned to walk, I had napped, only to wake up to an odd sound.  I went to look, and found my son on the other side of the very heavy sliding glass back door.  I was shocked.  He had managed to open the front door, walk around the house, and tap on the glass door to get my attention.  Talk about a wake-up call.

So I did some research on what could involve both exhaustion and hair loss.  The main thing that came up was Lupus, which scared me.  I was hesitant to get too worked up, though, as those were two very minor problems in the range of issues Lupus patients had.  So I went to my doctor and asked to be tested.  My doctor at the time looked at me with exasperation, but tolerated the request.  The blood tests came back negative, and the issue was dropped.

Life went on for several more years, until I had the chance to have lens implants in my eyes.  (My eye difficulties are something I will address another time.)  After the implants, I was shifted to another ophthalmologist.  After examining me the first time, he told me to have my doctor test me for auto-immune problems, specifically Lupus.  Alarms went off in my head, as we'd never really figured out what had caused my eye problems.  So I dutifully and anxiously went to my doctor (a different one from last time) and asked to be tested.  The blood test results were negative again, so life moved on once more.

Years passed again, but slowly certain things came to my attention.  My exhaustion was rearing its ugly head again.  I first dismissed it as stress and normal tiredness.  I was babysitting regularly at the time for working mothers I knew, and could have as many as four children in the house, from diapers to my own elementary school age boy.  That wasn't all, though.  Joint aches began to crop up from time to time.  I remember once I had stayed home from church services because I was sick.  I had to go to the living room for something, and as I hobbled down the hallway, it felt as if someone had stuck a piece of rebar up in my hip socket instead of the bone that should be there.  It was terribly painful, and had me gasping and crying.  It got my attention, and I went back to researching online.

The more I looked, the more concerned I became, and the more common my joint aches became.  I played World of Warcraft avidly, but was slowly having to play less and less.  I used to be able to participate in raids and battlegrounds that lasted three or four hours.  It came down to my being able to tolerate it only for about an hour, then I would have to stop, because my fingers and wrists felt swollen and hot.  This was not right.  It was time to see my doctor.

In I went (different doctor yet again), with hubby beside me.  I told him hesitantly and fearfully about my joint aches, about my exhaustion, all the while fearing he would say I was a hypochondriac.  He listened, then sent me to do a bunch of blood tests.  I went willingly, hoping it would reveal something this time.  No dice.  It all came back negative.  My doctor explained patiently and condescendingly that I just had a weak constitution, and that if I was tired, I should sleep.  He briefly massaged my finger joints, and said they weren't swollen, and would say no more about my joint pain.  I wanted to believe him, and so went home feeling relieved and reassured.

Except that my joint pain and tiredness did not abate.  They only got worse.

After enduring late summer monsoons, during which I could predict when it would rain and when it wouldn't via my joints, and after a winter that still was filled with great pain that kept me home almost all the time, we finally decided enough was enough.  If I had to bully my doctor into sending me to a rheumatologist, I would.  While I did some research online for local rheumys who understood Lupus, hubby did some research into our insurance policy.  Glory of glories, it turned out we didn't need a referral from my regular doctor.  We coudl by-pass him altogether and go straight to the rheumatologist.  It was a vast relief not to have to confront the doctor and tell him he was wrong and to send me to a doctor who knew what I was talking about!

So we made that first appointment, which ended up being a three month wait.  I hated waiting that long to finally talk to someone who could tell me if I was crazy or not, but at least the ball was rolling... sort of.  So I filled the time doing as much learning about Lupus as I could.  I skimmed books, I pored over facts online.  Finally the day came, and I went in with fear and trembling.

It was a baffling experience.  It was at a teaching university, so the doctor had two students with him.  They talked over my head, sometimes saying things I could follow (due to my research) and other times speaking gibberish as far as I was concerned.  My eyes got some attention, with the doc calling them mangled.  I also found out that apparently my arms are hyper-extensive.  He had me hold out my arms horizontally, palms up.  To my astonishment, all three of them began exclaiming and playing with how far and what directions my joints could bend.  I just stared at them as if they'd lost their minds, and answered no, I hadn't shown off being flexible as a child.  They tested me for fibro, but none of the points were tender or painful.  However, as if on a hunch, the doc reached behind me and touched first one point behind my hips (ouch!), and then the other (YOWCH!).  The right side felt like he was pressing crushed glass into my bone, oooh, how it hurt!

Well, that began a bit of a journey.  That first appointment had him suspecting ankylosing spondylitis, which he tested for along with all the other markers for autoimmune problems.  The results were, predictably, negative.  However, this doctor did not dismiss my pain and distress.  He assured me that he would do his best to get to the bottom of it, if possible, but for the time being, he was going to do his best to address my pain.

It was a process for certain.  He first tried putting me on a very high amount of ibuprofen daily.  I was taking 800mg pills three times a day.  That helped some, but didn't do much more than muffle the pain.  Then he tried putting me on prednisone along with the ibuprofen.  The way I came up to describe it is unorthodox, but accurate to how it felt.  Imagine an entire room filled with speakers, all laying on the floor pointing upward.  Now imagine them all playing some loud music.  That's my pain.  Sometimes they would be turned up loud, sometimes softer, but it always was a racket, you see?  The ibuprofen's impact was like tossing a nice thick blanket over the speakers.  It muffles them, but doesn't really take too much away from the noise, even when the 'volume' was low.  When he added prednisone, it was astonishing, because it was like going through this room of speakers and unplugging a bunch of them.  He later upped my prednisone dose, and it was like more of the speakers were unplugged, leaving me with just a handful, though they still boomed out the music pretty loud sometimes.  I could use the ibuprofen to help muffle it, but it was still there.

So his next move was to put me on methotrexate.  The difference was again startling.  While the prednisone pulled the plugs on the speakers, and ibuprofen muffled them, MTX was like volume control.  It forced the volume range to stay lower, softer.  It was pretty near to bliss to me.  It was also hugely impactful to me that it was possible to really do something about the pain.  It gave me hope that maybe, just maybe, we could solve this.  Make it better.

November was a heavenly month, very nearly pain-free and so very cheerful for me.  But that all changed.  Again.

During the Thanksgiving trip to my in-laws, I had a terrible pain attack.  A pain attack was something different from my usual pain, reminding me more of seizure than anything else.  It would come in waves, wrack my body with intense pain, and then fade slowly away.  The one I had at Thanksgiving was the worst I'd ever had.  I got through it, though, and hoped that would be it.  It wasn't.  Somewhere about that point, I began noticing feeling flushed from time to time, but without a fever.  I dismissed it.

Early in December we had an unseasonable cold snap.  It got severely cold, for this area, and I suffered badly for it.  It was crippling, and had me curled up at home constantly, taking as much ibuprofen as I was allowed.  It seems like since that time, I haven't had more than a week or so of good days before things get painful again.  Meanwhile I kept having those face flushes.  I finally asked my doctor about it two appointments ago now.  He asked for pictures.  Let me tell you, it was so hard on me taking those pictures.  It's difficult to describe, as it has to do with fear of Lupus, fear of it not being Lupus, fear I'm making much about nothing, just plain fear.

Last appointment, when I showed him those pictures, some of them he dismissed, but several had whatever it was he was looking for.  Yes indeed, this was a malar rash, and that meant he was declaring this Lupus officially.

I think I handled it well.  I'd had a long time to think about it, to build up to it, to consider the possibility.  Perhaps I even handled it too well.  I leaked tears on the way home, and fretted a lot afterwards, and fought against the idea of death.  I sought support from friends and family, some of which met my expectations, and some of which fell woefully short.  They all love me, though, and I know they can't always be exactly what I need.  I've spent time since then trying to come to grips with this life-changing diagnosis.

It's been a month since coming face-to-face with my fears.  I still haven't had the hysterical crying fit I expected to, though I know I've fought it down quite a few times.  I think it's settled into the minds of most folks I'm close to, though I have no idea how many of them grasp it. So here I am, ready to share my journey, my feelings, my inner thoughts, and my experiences with the world.  Buckle up tight, y'all.  It's gonna be a rough ride.