Day 363

I'm counting backwards.

It just occurred to me that if anyone does indeed read this, they'll probably think it's strange that I would count backwards.  Why?  Because I'm counting off a year.  Counting down to day one, to see if this illness still has such a powerful grip on me after 365 days.

When I first started this blog, I was on FMLA for two reasons--one was to care for my son, and the other was to care for myself.  I was burned out and miserable and having an intensely difficult time at work.  I also wanted the opportunity to talk about a certain TV show which for now shall remain nameless (but I will say since they brought Goren and Eames back they both are better than ever).  But like most things, life changes.

My only rule with this blog is to write honestly.  I think by this time I've lost almost all of the five or so readers I had generated.  I mean honestly, who wans to read the rantings of a person in pain?

I see this as a way to document the complexities of this condition as well as the difficulties in treating it.

As I was talking with a friend yesterday, I started counting of the number of doctors, specialists, and other professionals I have to see to treat this illness.  First, there's my PCP, who's supposed to be managing it all but I'm not sure really knows her ass from her elbow.  My rheumatologist, who diagnosed me, is more helpful in general but doesn't really deal with any of it but the diagnosis.  My pain management doctor, who I ranted about yesterday in her lack of belief of narcotics, even when they're useful.  Then there's my therapist.  I have to give a shout out to her because I actually like her.  The hour I spend with her each week is probably the fastest hour of my week.  She wants me to keep a dream journal, which I haven't been doing, but I do wake up with weird, random songs in my head.  This morning's theme was "The Girl Is Mine" by Paul McCartney and Michael Jackson.  Keep in mind Michael Jackson, from my perspective, was a pervert, so even though I recognize he had an incredible musical gift I'm not overly pleased to be singing any song by him in my head.  Especially this one, which is like bubble gum pup music.  Blech.

Okay, back to treatments.  There's also a physical therapist, a massage therapist, ultrasound and x-ray technicians and phlebotomists (those are blood people--I, like many fibro patients, have low Vitamin D levels).  There's the restorative yoga teacher.  Oh, and a psychiatrist to mess with all my meds.

I don't know how many people that is but it sounds like a full time job to me, and feels like it too.  These days I'm overwhelmed at going to one appointment, never mind two or four.  I'm tired and I want to sleep.  My arms and shoulders hurt.  If it were up to me today, I'd be going back to sleep, but I have to get a couple things accomplished, so too bad for me.

Today seems to be one of exhaustion rather than so much pain, so it's a good day.  Days in which I can hardly stay awake are good days, because the pain seems to lessen.  I still have pain in my neck and shoulder lingering from yesterday, but overall, I'd really just like to take a nap.

It's 1:30 a.m and I'm...

writing in this blog.

Even though I wrote earlier today I felt the need to continue.  Writing has always been an outlet for me and I think I've got a lot to get out.

When I went to the pain management doctor yesterday, I became aware once I left the extent to which pain is clouding my memory.  I couldn't remember what drugs she had prescribed, nor how I was supposed to use them.  In fact, I was so distraught that I spend the entire ride back to my house screeching at my mother about how I hate doctors and they all suck.  I do remember that.

I still don't understand the purpose of this crazy medicine she prescribled.  Way too expensive amd much less effective.  I figure I'll give her another day before I call and tell her it's not working.

I went to see my therapist today.  She wanted to delve deep into my childhood, which I'm used to with therapists.  Sometimes I feel like I should just write a summary for them so that they can read it and know ahead of time what they're dealing with.  It became clear through our conversation that she believes  the very beginnings of this pain are linked to sexual abuse I suffered at the hands of a family friend when I was a child.  I'm well aware of the mind-body connection and how people who are abused as children are much more likely to suffer from chronic pain as adults.  Of course everything she asked me caused me to draw a parallel to my own children, or a story about my own children, or a worry about my own children.

When I first became a mother I was thrilled.  Don't get me wrong, I still am thrilled and proud of my kids.  But very few days pass that I don't wonder what it would be like to have my own child.  Would it be a roly-poly baby?  A happy one who melts me with a smile?  Or a colicky, cranky baby who can never be soothed?

Often these days I find myself to be that colicky, cranky person who can't be soothed, despite the efforts of my loved ones and friends.  I can imagine it's hard to know what to say.  You can only tell someone so many times that you hurt enough to consider suicide before they don't know how to respond to you.  Avoidance is the number one tactic.  Sometimes I wonder if I just disappeared how long I could be gone before anybody noticed.

I met with an old friend today for coffee, and we had a pleasant conversation.  She has always accepted me for whoever I was in the moment, which is probably one of the biggest reasons I love her.  You don't go through life finding many people willing to stick through shit like that.  Sometimes you think you have found one, but something happens and everything crumbles like a pile of cards.  Nothing hurts more than to think you've built some kind of shelter only to have it cave in at the first gust of wind.

I sometimes find it funny that I write on here.  I question the point of a blog, especially since nobody reads it and I could probably write Mary Had A Little Lamb in the middle of every sentence and nobody would know.  But I would know.  And I promised myself this woud be an honest place for me.  So it's raw, like the rest of me right now--raw and painful.  I counted up seven specialists today that I have to see, and I think I left at leasst three off that list.    The thought alone is exhausting.

So tI guess I'll wrap this up.  It's nearly two a.m. and I wasn't meant to stay up all night.   This is day 363, I guess but Il write that entry later.  Right now I'm just going to try to block out the pain, and go to sleep.  I guess we'll see.

364 Days

Yesterday I blogged about something I don't think I've hit on before--the pain of fibromyalgia.

I've decided I'm going to blog on this subject for one year, every day.  See what works and what doesn't.  See if I'm still sitting in the same place a year from now.

Today I work up with stiffness, soreness, and pain in my left shoulder and that side of my neck.  That's unusual for me, because usually my pain is on my right side.  By noon it had moved and the pain was being shared between both sides of my shoulders.  How nice of it to share.  @@

They are currently treating me with flexeril, a muscle relaxer, and the pain management specialist I went to yesterday started me on some new pain narcotic that starts with an N.  Nucynta or something.  All I know is it makes me feel foggy, dizzy, and tired but does nothing for the pain.  It's incredibly expensive.  I really don't understand why I can't just have Norco.  I get that it's an addictive drug, but honestly I'd rather deal with the addiction concerns than live in pain.

There are days, like yesterday, that the pain is so acute I can't get out of bed, or I cry all day.  Yesterday was a crying day.  I cried for six hours or more, and now I'm crying again.  It isn't that the pain in and of itself is so horrific.  It's the day in, day out of pain that never lets up, that robs you of your life, that keeps you from doing the things you used to love.

I'd compare the pain I have today to severe whiplash from an auto accident.  It's painful to turn my head in any direction, including to drive.  There are some days I have migraines--pain gripping the entire side of my face that won't let go.  But the worst is my shoulders.  They hurt all. the. time.  The pain is incredibly intense and I have only found two ways to improve it.  One is, of course, the narcotic vicodin, which does relieve my pain tremendously.  The other is massage, which removes it for a few hours before the muscles begin to spasm and contract again.  There have been times my shoulders have hurt so badly I have been unable to wear a bra, forcing me to stay inside in a tee shirt.

My lower back is known to give out and often aches if I'm on my feet too long or walking in the wrong kind of shoes or wearing the wrong kind of clothing, even.  Pain in my back is common, and probably at least once every six months to a year now my back goes completely out, meaning I cannot stand straight at all and am in horrific pain if I try to stand, period.

I used to be the kind of person who agreed that narcotics should hardly ever be used, and that lots of people overprescribed them and overused them.  I'm not a drug addict, do not use illegal drugs, nor do I smoke.  On the rare occasions that I drink, I generally stop after one or two.  However, the last several months have been life-altering for me in how I view these drugs.  When I do not have an effective pain reliever to make living more bearable, I am not above going to a bar and having a couple of drinks.  I've always heard it said that "alcohol masks the pain" and it does, just as vicodin does.  The fact of the matter is that while certain medical conditions do have cures, there is no cure for fibromyalgia.  I have begun treatment regimens but it's slow going and much harder to do when I'm in constant pain.

Finding doctors who are familiar with fibro and understand--REALLY understand--the depth of the pain is hard.  I frequently find myself thinking of ways to die on days when the pain drags on and on.  I don't think most people understand the frustration of that feeling, the desperation that one feels to just rid oneself of the pain.  Anything--even death--sounds better than continuing in a life that is painful and has stolen your body, your livelihood, even your mind.  There's a condition called "fibro fog" that is common for fibro patients.  Between the depression, anxiety, and pain, it's often difficult to think clearly. The exhaustion that goes along with the illness makes it hard as well.

I have, at least temporarily, lost my livelihood because of this illness.  I have lost time with my children as well as their respect and admiration.  I have lost huge parts of myself to an illness that nobody understands.  And I'm about to fall asleep writing.  It's 1:24 p.m., and I can't go another minute without sleep.  Damn this illness.  Damn it to hell.

Pain and Depression

They're inextricably linked, aren't they?

My pain is intensely horrific.  I bleed from the inside, where nobody sees, into my muscles and joints and tendons.  I bleed into my neck and my skull, into my shoulders and my back, and even into my knees.  All of the tender points, they hold toxic blood in me.

Nothing stops it, really.  There are days or hours or moments where the toxicity lessens, or laughter makes it lighter, but it never really goes away.  It flows through my eyes in the form of salty tears that fall and cover my skin.  The saltiness makes me think of Danielle and Sarah, and the kisses I would bestow upon their tiny brows when they were little; the salty taste of cystic fibrosis left on my lips, reminding me of their delicacy and strength.  Pictures of them now, nearly adults, documenting the delicacy of life, even among the strong.  In a moment it's snuffed out, like a candle.  I never believed that when I would cradle them in my arms.

My life hurts.  My kids, who I fail, my husband who long ago stopped being involved with me; my job, which challenges me to teach when I can hardly rise from my bed.  My parents, who insist there is value in the broken and bruised.

If I disappeared?

How would life change?

It would go on, the conversations continuing; another lecturer to teach what I used to; another woman to comfort my children and other friends to pick up wherever I left off.  I want to be alone.  Alone.  Away from all of you.  By myself, alone.

I hate myself.

Happy Birthdays

Today our son is fourteen.

Last year was the beginning of being a teenager, and that was a big deal too.  But for some reason, fourteen seems so much older.  At fourteen, you're a breath away from high school and all the drama that brings.  He has started to date--simple dates, mainly to the movies--but enough to remind me he's not a baby anymore.  Fourteen year olds are growing up, growing older, and a year farther away from being a little kid.  My little kid.

Today I've spent a lot of time thinking about him when he was a preschooler.  His haircut, his tiny clothes, his bed that was so big in comparison to his tiny body.  Character underwear and action figures and baths.  Snuggles and kisses and hugs.  How he and his little sister would eat at a little tykes picnic table we kept in our tiny apartment, and how he loved peanut butter and jelly sandwiches.  His huge, beautiful eyes and long lashes.  His love of swimming and riding his tricycle, of mastering new things.  Puzzles and games and art and even his own speech.

I would imagine that most mothers fondly recall time spent with their babies upon their children's birthdays.  Of hours spent in the hospital giving birth, of newborn cries and comfort, of learning to respond to their babies.  My memories are similar, just later.  Of a little boy turning four, his party at the local park, his excitement.

This is the child that I didn't give birth to but cared for his every need.  And every birthday brought new accomplishments and new challenges.  All the days in between birthdays, consisting of daily learning and daily struggles for us all.  But even in the hardest of moments, he has always been my beautiful boy.

Happy birthday to you, my handsome teenaged son.  You are loved and adored for exactly who you are.

Loving Unconditionally

I saw the doc at my preferred urgent care yesterday and she helped treat my symptoms, so I'm finally able to think halfway clearly today--a wonderful Easter gift.  Thank you, Lord, for every blessing in my life.

My son has started back on a medication regimen.  He is almost fourteen years old--celebrating a birthday this coming week--and has strong feelings about his medication.  He complains it keeps him from sleeping and makes him feel depressed.  It's a difficult situation to explain to him that he had these same problems before the medication, when he's convinced the medication is causing them.

The medication has slowed down his motor for sure.  It makes for a huge difference in his ability to cooperate with other people.  He's less jumpy, less irritable, more attuned to others.  The downside is that the slower movement gives him time to think about things that make him sad.

The other night was a difficult one (hey, a pill doesn't cure everything) and resulted in me sending him to his room for bed early.  I saw my mother enter his room and realized a moment later that he was sobbing; real sobs from deep down inside.  The lack of anger in it was what caught my attention.  It was the first time in months I've heard him cry out of sadness instead of frustration or anger.  My mother left his room a minute later.  I was alone in the den and called to him, assuring him I was alone, and my child--the one who's taller than me, who has feet the size of a grown man and his own opinions and thoughts and beliefs--came to me, sitting next to me on the couch and allowing me to hold him like I did when he was a little boy.

And he cried.

As I held him, I thought about how hard this road is for him.  How it sucks to know that the people who conceived you don't want to take responsibility for you.  How alone and isolating it must feel, despite others wanting in through that wall.

When I was three, my grandfather died of a heart attack.  He was fifty-eight.  For years afterward, I would have a dream that I was reaching up to a door handle and I could see a skeleton costume in the doorway.  Only later, when I  was a teen, was I told that my grandfather's last visit was around October and he had brought me something kept in that closet.  I also have a vivid memory of the night he died, of waking up and finding a family friend there instead of my parents.  My grandfather, in a short three years, had connected with me in a way that left strong impressions on me.  When my grandmother remarried three years later, I had great difficulty accepting her husband.  In fact, I didn't like him at all for several years.  I refused to accept him, much as children sometimes reject a stepparent.  It took most of my adult years to come to understand that a bond with my grandmother's second husband did not negate my love for my grandfather.  In the end, this man was the only grandfather I really ever knew.  My other grandfathers died when I was a young child.  This man went to my graduations, took care of me when I visited with my grandmother, and even attended my wedding just three months after my grandmother died.  Shortly afterward, I bought him a book that I knew he would appreciate and wrote a letter to him, letting him know that I loved him and he was a wonderful grandfather.  He thanked me repeatedly for that book over several visits, but we both knew what he was thanking me for--the acknowledgement of his love and care for a child who rejected him.

Sometimes I wonder if my son will one day understand how much I love him, how much I have willingly given and sacrificed for him, or if he will always stay so focused on wanting his birth mother that he won't be able to see the forest for the trees.  I know he loves me and I love him.  But it's painful for him not to be loved by the one who should love him the most.  And despite the nearly eleven years we have been together, I don't know how reasonable it is to expect him to understand how I feel, how much I want to be loved by him.  So I trudge along, like my grandfather did, attempting to give unconditionally and love unconditionally, and praying that somehow my efforts make a positive difference for my son.

I adored my grandmother but she didn't live long enough to meet my children.  My grandfather, however, did, and he loved both of my children the same way he loved me; with an unconditional acceptance and joy.  There was always a dollar in his pocket for each of them and a hug in his arms.  My son remembers him fondly as well, with an unconditional acceptance of him being part of the family.

I am a strong believer that God places certain people in our lives to teach us lessons.  My grandfather modeled the importance of unconditional love to me.  I hope my son feels that somewhere inside, that I love him no matter what.  That his pain, his tears aren't being ignored; that I love him and will always be here to help him as much as he needs.

As he let me comfort him the other night, I was reminded of the fact that I am his mother and the frustration and anger I feel toward this boy-man should always take a second seat to love.  And in that moment, we were blessed with the opportunity to connect again without the teenage anger and frustration that so often accompanies us these days.  And I hope he walked away from that moment with an even stronger understanding of how much he is loved.

An Open Letter to all Doctors

Dear Doctor,
As you know, I am one of many sufferers of fibromyalgia.  Currently I am flaring badly and am waiting to be seen by a pain management specialist.  Unlike when I was in OK and my PCP prescribed whatever he felt I needed, my doctor here is gunshy of any pain medication and has flat out told me she will not prescribe it.  For that and many other reasons, I am looking for another PCP.

Last Saturday, when the pain was so bad it was all I could think about, I came to your clinic as it was one of the few open on Saturdays.  After waiting for two hours to be seen, a very kind doctor entered the room, listened closely to what I said, pressed gently on my shoulders and prescribed pain medication.  He apologized for my agonizing wait, recognizing the pain that fibromyalgia can cause.

Today I called your office to ask for a refill to last until I get to pain management.  One refill.  The nurse took my request and spoke to you.  When she called me back, she gave me your answer.  I was to follow up with my own primary doctor.  At one p.m. On a Friday.  Now that's true care.  Even if I WANTED to there is no way I could make it into her office today.  How many doctors do you know who take patients a few hours after they call on the last day before the weekend?

I begged the nurse to please talk with you again.  She agreed after much discussion.  That was two hours ago, so even if she calls back soon, it will be several more hours before I can get my medication.

Perhaps you're unfamiliar with my diagnosis.  Perhaps you've never felt the pain of somebody yanking your arm out of your shoulder, knots as large as your fists in the back of your neck and head, flushed skin, aching back and hips.  Perhaps you've never felt the fatigue that keeps you laid out for days yet struggling to sleep because of the pain.  Or the shame you feel at not being able to do the things with your children or your job or your friends that you used to be able to do.  Or the depression that settles over you, heavy, like a rug smothering the life out of you.  I am not the same woman I used to be.  Everything that mattered to me has been taken away.  The only way I can partially get it back is through pain medication.

I fully expect when your nurse calls me back she will tell me that you have no intention of helping me.  You've already made your position clear, which leaves me with the option of lying here suffering or going to yet another clinic to receive medication.

And people wonder why those of us in pain look like we're drug seeking junkies, visiting multiple doctors.  There's no other option, is there?