When Life Laughs at Your Best Laid Plans

 “I’m shattered
Into fragments cold and gray
Sweep the pieces all away
Then no one will ever know how much it mattered
Something deep inside of me shattered.”
(from “Shattered” by Jimmy Webb)

Death is no stranger to me.  I have felt its sorrow and I have drunk its bitter wine.  When my sister Judy died in 2007, the burden of grief was so heavy that I could hardly breathe.  Although I knew she was dying, her death was a long time coming, and the loss still startled, still ambushed and surprised, and I hurt until there was finally no more hurt to give, just the ever-burning flame of absence and all that is missed.

When death came to my family, I thought it would be in the natural order of things.  Oldest to youngest, reverse order of our entry into this world.  First would be Dad, then Mom, then my sister Judy, followed by me, my sister Lisa, my brother Steve, my sister Terri, and finally, my brother Greg.  With this chronological order of departure, I would be prepared, there would be no surprises.  The tears would flow, my heart would ache; but knowing ahead of time, in my mind at least, that we were fading away in our proper place in line as nature intended would soften the blow.  It would allow my heart to catch up with what my mind would already know.

But life has a way of shaking up how you think things should be.  John Lennon said it best.  “Life is what happens to you while you’re busy making other plans.”  Life took a look at my plan and muttered, “Screw that.”  Judy died first, followed ten months later by Mom.  Cancer took Dad 3 years ago.  Three members of my family in less than 5 years.  We had been over 2 years without losing another, and then life fragmented again.

On November 3rd last year, my younger sister Lisa was diagnosed with inflammatory breast cancer.  Two months and six days later, she was dead.  January 9th, 24 days after her 51st birthday.

When she died, the heart of me died with her.

I am not all right.  I cry every day.  It affects my sleep and my appetite.  I’ll be at work and suddenly the tears will roll.  Driving, reading, showering, all opportunities for the tears to fall.  I cry so hard, I can’t catch my breath.  I bite my pillow at night so I don’t wake the household with my wailing.  “Loss” is the word of the day, the word of my life.  I am at such a loss without her.  We talked every week, often every day.  When our sister Judy died, Lisa and I flew out to Nevada together for her funeral.  We were each other’s comfort and strength.  As heartbroken as we both were, we brought each other through that mournful time.  But now she’s not here to bring me through this one.

Death is kind to no one, not even those who need it most.  It’s a harsh and demanding mistress.  About a month after Lisa passed, I picked up my phone to call her.  I had the number almost punched in before I remembered that she was dead.  I wept for hours.  Thoughts of my sister creep up on me when I least expect it and I’m right back at hospice.  Moments before she died, after being practically unconscious for at least 2 weeks, Lisa opened one eye.  She looked at her husband, then our sister Terri, and finally at me.  I leaped from my chair to her bedside and told her that if she saw Jesus or our parents or our sister Judy, to go, to run to them as fast as she could, because the cancer had won.  She couldn’t beat it.  And then, she went away.

UPDATE:  I  started trying to write this post the week after Lisa died.  Today is August 31st.  It has taken me nearly 9 months to get to this point.  I still cry every day.  I’m crying as I write this.  I am the 2nd sibling of 6.  Judy was oldest and 3 years older than me.  I was born second and Lisa was third.  When Lisa arrived,  I was 10-1/2 years old.  My other three younger siblings were born when I was nearly 12, just past 14, and 17-1/2.  I was away at college when the youngest joined us.  In our family, we called the last 4 sibs “the little kids.”  As Mom and Dad were sick and dying, they both told me to take care of the little kids.  And now one of the little kids had died and I couldn’t stop it.  I think that’s why it hurts so much and I grieve so hard.  I couldn’t save her, not against cancer, and she was my little sister.  She wasn’t supposed to die before me.  She had grown sons.  She was supposed to be at their weddings and with them at the hospital when her first grandchildren were born.  She wasn’t supposed to die yet.  It was my turn.

In the poem “The Testing Tree”, the poet Stanley Kunitz writes:

“…..the heart breaks and breaks
and lives by breaking.
It is necessary to go
through dark and deeper dark
and not to turn.”

That’s where I am now….in the dark and deeper dark, groping my way through the blackness and trying not to turn until I at last see some light.  When Lisa learned she had cancer, she and her husband only told their two sons.  She waited a week before telling the rest of us in order to give herself and her family some time to adjust to her diagnosis.  In the second week of November when she spoke with me, I told her i was scheduled to be out of town during the Thanksgiving holiday.  I asked if she wanted me to cancel the trip and be with her.  She said, “No.  I want you to live.”  That’s what she wanted for all of us…..to go, get out and live life with all its imperfections, heartache, and delight.  To wrap our arms around its neck and hold on for the ride of a lifetime.  To be knocked down and get back up and be knocked down again, laughing, crying, and celebrating every hard-earned step of the way.

She wanted us to live.

And so I will.  When I get to where I’m going and I can see the light again, I may still be broken, but I won’t sit life out.  Between the loving and the leaving, Lisa showed me how to live and she taught me how to die.  I will grab life by the tail and raise such a ruckus until death finally comes and catches me shouting as loud as I can, “Wow!  What a ride!”  I will do it for me.  And I will do it for her.

Rest in peace, Lisa.  I’ll tell you all about it when I get there.


The Real Write Stuff

It occurred to me today that I post about my writing, but I haven’t let you read any of it.  So today’s post contains an essay and a poem, both written and published several years back.

The essay started out as a short piece titled “The Silences We Keep”, but it ended up being expanded and published as a larger chapter in the anthology Mentors, Models, and Mothers: A Community Writing Project, edited by Judith Blackburn and Susan Hilgendorf.  I was privileged to read this at a meeting of biographical writers in Chicago and it brought tears to some peoples’ eyes.  As a bit of background, this essay is about telling my Southern Baptist parents–my church deacon and Sunday School Director dad and Sunday School teacher mom–that I was gay.  Anyway, here it is:

“When I could be silent no longer, I told them all I could.  But I didn’t say lesbian to my mother and father. .

I couldn’t.

For to say lesbian to them then would have been to say unnaturalUnholyQueer.  To say lesbian then would have been to say I am shame.  I am anathema.  I am the evil no parent wants as daughter.

So when the time to tell came at last, I said only gay.  I said only please don’t hate me.  I didn’t say desire.  I didn’t say need.  I didn’t say love for a woman. . .

. . . I didn’t say lesbian.

And I didn’t tell them of stones cast and lessons learned along the tangled path to revelation.  I didn’t tell them of slights from strangers and assaults from friends.  I didn’t tell them of truth lost and untruth gained, of learning to lie and learning to hide.

I didn’t tell them I could no longer see the face of God.

And I didn’t say that I would rather have endured the eternal rending of my own heart than cause their hearts a moment’s pain.  That I would rather have cut out my tongue than come to them with words they could hardly bear to hear.  That being a disappointment to them was something that would ache inside me until the day I die.

I didn’t tell them any of these things.  I said only the few words that I could stand to say.  I’m gayI’m sorryPlease don’t hate me.”

The poem is titled “A Moment of Life”.  I had a pregnant friend whose newborn baby was delivered in an emergency situation at home and died before an ambulance and help could arrive.  I combined the voices of everyone who was at the scene into one person, the narrator of the story.  This poem was published in the anthology Mourning Sickness: Stories and Poems about Miscarriage, Stillbirth, and Infant Loss, edited by Missy Martin and Jesse Loren.

“You sit cross-legged on the floor,
glazed eyes staring through the rusted screen door
at a Fourth of July sun blazing down
on the bare arms of browned farmers
baking in the fields.

Are you all right, I say,
just as you stand up and a dark circle of blood
gives testimony to where you have been.
Too soon.
The baby is coming too soon.
We all move at once —
Grandma screaming into the phone for an ambulance
that won’t make it in time
and Mom laying you down
and me praying “Sweet Jesus, you’ve got to help me here.”
But I guess even He takes a break now and then.

The child died in my own two hands.
Now she lies in a small graveyard
just off a dusty, gravel road.
Two uncles and an aunt keep her silent company there.
One lived a day, one lasted a week,
and one survived just long enough to be missed.
Sometimes I put flowers on her grave,
a tiny doll, some baby toys.
The wind always bears them away.
But nothing disturbs her gentle slumber,
while I lie awake night after night
wondering what more I could have done.
Was it my fault?
Never to forget that moment of life,
wrapped forever around my heart
like lights on a Christmas tree
that shine so brightly for just a brief season,
before their glow is gone.”

Depression, Writing, and What Comes Next

“Got to kick at the darkness ’til it bleeds daylight.”

from “Lovers in a Dangerous Time” by Bruce Coburn

When I go months between posts, you can safely bet that it’s because I’m going through what my therapist calls a “depressive episode.”  If you’ve read my post about how depression affects me, you already know how hard it is for me to shower or brush my teeth.  At some point, I’ll get these things done, but the one thing that I absolutely cannot do when I’m depressed is write.  I can function at work and do the technical writing there, but creative writing is a bust.  I just can’t do it.  You know the line from the Snickers commercials that says, “you’re not you when you’re hungry”?  I’m not me when I can’t write.  So during this time there was no working on the book, no posting on the blog.  Nothing.

This episode lasted fairly long, most of the summer.  I had finally started coming up out of it when I heard the news that Robin Williams had killed himself.  I immediately thought what I’m sure a lot of us struggling with depression thought:  “If the funniest man on earth can’t make it, how in the world can I?”  My answer to that was to sink back down into the abyss.   This time, unlike over the summer, I caught it early.  I knew what was happening, I knew why it was happening, and I kicked and screamed until I broke the surface again a couple of weeks or so ago.  Or, to put it less dramatically, I made myself get out of bed every morning, go to work, do fun things with Ginger, reminded myself that I knew how and had the tools to help myself come back up for air.  Now, here I am until the next episode hits, and then I’ll fight the good fight all over again.  And I will win one more time.

Let’s catch up.  I’ve already told you all about the book.  I may change the title because it’s a big mouthful and also I don’t think it quite lets the reader know exactly what the book is about.  That’s where the book stands.  While working on the book, I thought it turned into a play.  When I was at work today writing all about the joys and heartaches of using Piping Support System software, the play felt like it turned into a chapbook of poems.  That’s when it hit me.  My writing isn’t morphing.  I’ve really got three separate pieces going on here.

The book, for those of you who haven’t read that blog post yet, is about my mom and her Alzheimer’s disease and me and my depression.  The play, for now titled The Session, is about a rape survivor who confronts the psychologist/therapist whose testimony convinced the jury that the rapist didn’t commit the crime.  I don’t want to say more about it because there are twists and turns and I don’t want to give anything away.  The book of poems is tentatively titled Dreams of Life on Another Shore.  I have no clue what the commonality between the poems and, thus, the subject of the book is, but I’ve already started on the first poem.  Right now, I’m thinking that the book of poems will come first and get priority.

So that’s where things stand now.  I’m bathing, brushing my teeth, and writing.  Life is good, at least until the next time the black dog of depression comes to bite me in the butt.  But for now, it’s all sunshine and lollipops.  These are the days I treasure most.

Let me introduce you to my dance partner. Her name is “Depression.”

“When I’m not crazy, I’m just a little unwell
I know, right now you can’t tell
but stay awhile and maybe then you’ll see
a different side of me.
I’m not crazy, I’m just a little impaired
I know, right now you don’t care
But soon enough you’re gonna think of me
and how I used to be.”

“Unwell” by Rob Thomas, Matchbox 20

I took a shower this morning, washed my hair, and brushed my teeth.  Big deal, you say.  Well, yes, it IS a big deal.  Until this morning, the last shower I had was this past Friday.  I hadn’t brushed my teeth since Monday.  Today is Wednesday.  You’re thinking, “GROSS!!” and I don’t blame you.  But it could be a lot worse.  I know because I’ve been there.

I’m one of the lucky ones.  I’m not bipolar.  I’m not schizophrenic or psychotic.  I “only” have plain old, run-of-the-mill, garden-variety depression.  But I can tell you for a fact that it packs a punch and it leaves a body that’s bleeding.

I was officially diagnosed in November 1995 when I was 42 years old.  My therapist believes that depression first came to me when I was in junior high school.  My school wanted to skip me several grades ahead after first grade.  My parents consented to just one.  Public schools didn’t have a clue how to deal with their gifted students back then.  Their method of motivation and support was to continually hammer into your brain that yes, you’re smart, but you’re not good enough, you’re not doing as well as you can, over and over and over again.  I was blessed to have the occasional saint of a teacher who protected me from the onslaught, but there weren’t nearly enough of them.  You hear this stuff repeatedly over six years of junior and high school and you start believing it.  Then, you go away to college when you’ve barely turned 17 and not emotionally equipped to handle it, so you prove to yourself that all those people telling you how insufficient and unworthy you are were right all along.  I started drinking and popping pills.  I flunked out my freshman year and what little was left of me tucked tail and crawled back home.

Flash forward 24 years.  That’s a long time to feel guilty and bad about yourself.  So much had happened in those years from the hardly bearable to the truly horrible.  I won’t go into any of it here.  There are some things my family doesn’t know and doesn’t need to know.  Like I once told my dad, “If I told you everything I’ve been through, it would make you weep.  You really don’t want to know.”  I’ve survived.  But as 1995 went by, I knew I wasn’t doing well at all.  My work was suffering.  My relationships were suffering.  I was having a breakdown.  I said something to my doctor and she told me to get help and not to wait.  I made the call that day.  I met my therapist the next week, started medication the week after that, and began weekly sessions.  In mid-December 1995, I took a one month medical leave of absence from work while the medication took hold and I found something in myself to grab on to.  Sixteen years later in 2011, I was finally able to stop therapy and take care of myself.  It was a long, hard road getting to that point.  I won’t go into that here either.

Depression is a murderer.  It will kill your sane mind and make you believe there’s something wrong with you.  You become delusional.  When I first started therapy, I couldn’t function in some areas like a normal person could.  There were days when I walked on the furniture because I was afraid that if I stepped on the floor, I would have to be an adult, leave my apartment, cope with the world….and I knew I couldn’t do that.  There were many times when I couldn’t go out.  Even a trip to the grocery store was frightening.  I would put on my coat and hours later I would be sitting on the couch in the dark with my coat still on because I just couldn’t move.  You do irrational things for no good reason and often without being aware you’re doing them.  When I relocated to be closer to work, my Dad helped me move.  We found over 200 cans of Campbell’s soups in the closets of my apartment.  When he asked my why, I couldn’t tell him because I didn’t know.  I just kept buying soup.

Worst of all, depression is a liar.  It causes you to believe things that aren’t true and you don’t know that they’re not true.  By the time I started therapy, I knew in my heart that I was worth less than the dirt on the soles of my shoes.  I believed I was stupid, unworthy of the least kindness, a bad person, dangerous in some way to everyone around me.  I had no joy.  I stopped playing the piano.  I stopped writing.  Depression told me I couldn’t play and I couldn’t write, that I was miserable at both.  And I believed it.  That’s when “Little Debby” emerged.  Little Debby was the deep part of me that had endured the hardly bearable and the truly horrible.  She was the part of me that knew best and knew most that I  was so vile that no one could love me or think kindly of me.  I couldn’t love me.  So I put Little Debby in the deepest part of my heart and bricked a wall around her so thick and high that no one could see the “real” me–the vile me who depression told me I was.  No one would ever know the “real” me and then no one could be disgusted by me or hate me.  It was a hard thing to keep inside.  It was like having a pressure cooker in my chest waiting to blow off steam, to tell the world just how horrible I was.  When the pressure would get to be too much, when my life was so out of control that I couldn’t stand it anymore, I turned to the one thing I could control: my body.  Self-mutilation.  Just a small cut or two would let that steam escape safely and I could breathe again.  We do what we must to get by.

But as the saying goes, that was then and this is now.  I’m a lot better.  I don’t need therapy anymore.  I’m still on medication because my depression is both an imbalance of chemicals in my brain and emotional, situational, environmental, or whatever you want to call it.  I will be on medication the rest of my life and that’s alright because my life is so much better now and I’m happier.  That doesn’t mean that I don’t have bouts of depression.  I battle with it every day.  It’s been a bit worse for the past several months.  When a period of depression starts, the first thing that goes for me is hygiene.  That’s my first clue.  For some reason, I can’t brush my teeth.  Then, I’ll notice that I haven’t been showering.  I put on clean clothes every day, but forget everything else.  I’ll take a wet washcloth and run that across my teeth and wash up, but for the life of me, I can’t do the full job.  It’s okay, though.  I have family and friends who don’t hesitate to tell me that I’m beginning to stink or that my teeth are starting to look like hell.  🙂  Right now, I’m showering and brushing more than I was a month ago, so life is looking up.

There are things I can do to help myself when I feel the depression coming on.  Don’t be alone, especially with my thoughts.  Get out of the house and go where there are people.  Go to a bookstore, a restaurant, a movie.  See a good play or listen to a great concert.  Do some house cleaning or anything that provides instant gratification and a little pride in myself.  Just talk to Ginger, let her know I’m sinking and I need her to get out of the house with me.  Therapy armed me with many ways to help myself not sink all the way to the bottom again.  If I can catch the depression early, I can function and bring myself out of it.  If I don’t and it gets really bad, I can see my therapist for a tune-up.

Now, please don’t feel sorry for me or badly for me.   We all have our cross-eyed bears and this is one of mine.  Don’t feel like you need to comment here or on Facebook and tell me how strong I am or how sad it is or whatever.  I didn’t blog about this for that to happen.  In fact, I’d rather you didn’t comment at all.  So why did I write about this?  One of my brothers once said to me, “I don’t spread my life all over Facebook and the internet.”  Well, I do.  I’m a writer.  Writing is what I do.  And what I write about is often what most people won’t put on paper or Facebook or the internet.  I write the hard stuff and I do it because somewhere out in the blogosphere is someone wondering if she’s crazy, if he’s a loser, if she’s awful for cutting herself.  There’s someone feeling lower than a snake’s belly and wondering if anything can be done about it.  There’s someone going through something truly awful and wondering if she can survive it.  I write about this to tell them all that yes, you can survive whatever it is.  I know because I have.  Let me tell you all about it…..

Little Debby and the Fairly Bad Day

What a day.  It started this morning as I backed down our snowy, icy driveway right into a 2-foot tall wall of  rock hard ice.  The tailpipe on my car disappeared into the crust.  I had managed to avoid it all week, but I wasn’t paying attention today and plowed right into it.  My car couldn’t go backward and wouldn’t go forward.  Spinning tires, black smoke, and an engine screaming, “No! No! No! No! No!”.  I rocked the car back and forth, just like Dad taught me.  I cajoled, I pleaded, I bribed (“I’ll give you a higher octane and shine your tires, pretty please?”).  Not an inch.  That’s when I got out of the car and screamed a four-letter word very loudly.  It’s a wonder I didn’t start an avalanche.  It’s also why I was standing in the snow and ice facing the sky and apologizing to Jesus for cursing Mother Nature.

So back up the hill to the garage I trudged.  I knew the snow shovel wouldn’t even scratch the icy surface, so I grabbed the big gun – the heavy shovel with the pointy tip.  I scraped the ice in front of all four tires, got in and rocked the car again and then gunned the engine.  Nothing.  I went back into the house, growled at Ginger, grabbed a box of table salt, and spread that on the ice in front of the tires.  Still nothing.  Ginger came out with a jug of cat litter and I tried that.  No go.  Then Ginger came down the driveway carrying sheets of roofing tile leftover from when our roof was replaced last year.  I got some more and we laid them down in front of all four tires.  I tried the car again and it moved forward a couple of feet.  We re-laid the sheets and I made it almost to the top of the drive.  Free, at last!  Hallelujah!  I thanked Ginger 50 bazillion times, backed down the driveway, and headed for work.

What a crappy morning, I thought.  What can I do to make this awful start to the day better?  I know!  I’ll take in donuts for everybody at work!  But…. no…. in a somber moment I thought, “this is a private sorrow”.   🙂  BREAKFAST FOR DEBBY!!!  Woohoo!!  Taters!  Yes!  Hash browns!  I love potatoes almost as much as I love bacon, so you know it’s a lot.  I pulled into a McDonald’s drive-thru and this chirpy voice said, “Good afternoon!” and I got the giggles.  The voice started laughing and blurted out, “Good morning, what I can I get you today?” and then she–the voice–got the giggles, too.  So I put on my own chirpy voice and asked for three hash browns and a medium Diet Coke.  I was feeling pretty darn happy.

Then it happened.

“Our Diet Coke machine isn’t working.  Could I get you a sweet tea or something else?”  A sweet tea?!!  A SWEET TEA???!!!  In the name of all that’s holy, how can a sweet tea ever, EVER substitute for a Diet Coke?  I need my diet cola every morning like a coffee addict needs java!  The day was getting worse, not better!  I sadly told her no, that I would just take the hash browns.  After I got the food, I said to myself, “I am not going to work until I get my Diet Coke, doggonit!”  So I drove down the road to the next McDonald’s and instead of a medium, I got a large with extra ice.  I showed this day who was the boss, by golly!

By then, I was all pumped and ready to tackle the day.  When I pulled into the parking lot, I had to park way out at the end of the huge lot because I was late and all the good spots were taken.  Grumble, grumble.  I got to my desk and made the mistake of opening office e-mail.  For those of you who don’t know, I’m a technical writer.  I write manuals that tell how to use the software packages that are designed and developed by my co-workers.  We work under heavy deadlines.  If something goes wrong in design or development or another area and there’s a delay, then we’re all delayed.  My work gets finished at the very end, a week before we turn everything over for distribution and publication.  Our original date for turnover was next Monday.  There were delays in another area, so I was already too close to the deadline.  Then, I opened an e-mail this morning saying a problem was found during product testing that was being fixed and I would have to make changes to two manuals that I already had ready to go to distribution.  The curse of the day continued.

Then, at lunchtime, things suddenly got better.  I had seven manuals that I had to finish and get ready for publication.  I had four of them done by 11:30.  I had a tasty lunch at Taco Bell and caught up on three days of newspapers that I hadn’t read yet.  I even found a parking spot right by the side door when I went back to work.  The sun was shining.  The sky was a beautiful shade of blue.  Little squirrels walked beside me, bluebirds perched on my shoulder, and everyone who saw me applauded and gave me money.  Okay, I lied about that last part, but it was still a great day.  I finished the other three manuals, wrote and submitted my status report for the week, filled out my time sheet, and set my out of office message for tomorrow.  I was heading into a three day weekend and everything was marvelous!

Until the drive home…..

I headed down Sharon Road past the entrance ramp to southbound I-75.  Then, the traffic stopped.  I mean, it dead stopped.  No one was going anywhere in the direction I was headed.  I couldn’t see past the humongous truck in front of me.  I didn’t know and still don’t know what was stopping us.  I finally reached an intersection where I could get off the road and turn around to go the other way.  I got back on Sharon Road and stopped for a red light at the intersection where vehicles get off the interstate.  Just before the light turned green, a very long and large semi came halfway off the exit ramp and stopped right across my lane.  The light turned green and the truck driver got out and started walking around the truck.  What the heck?!  I couldn’t believe it.  I was finally able to cross through the intersection in an empty oncoming lane and I blew my car horn every inch of the way.  By then, the driver was back in the cab and showing me both of his middle fingers.  So I blew my horn in multiple blasts and stuck my tongue out at him!  Yes, folks, I’m five years old, and IT FELT REALLY GOOD.  The man could have gotten several of us injured or killed and HE was giving ME the finger.

The rest of the drive home was uneventful and this evening has been great.  I got some heartwarming news about two people that I love very much.  Ginger and I had dinner at our favorite Japanese restaurant and she treated.  I’ll be watching the Olympics as soon as I finish this post, and I don’t have to work tomorrow.  With so many really terrible, horrible things that go on in the world every day, how can I complain about my petty annoyance of a day?  Because my therapist told me that someone else’s worse pain or sorrow has nothing to do with how significant my pain or sorrow is to me.  It’s all relative.  That’s the grownup answer.  The answer from this five-year-old is that it just really pissed me off!

Good night, everyone, and have a better tomorrow!

I’m obsessive (but not compulsive).

It’s been a few months since the last post, so let’s just jump right into the happiness of all you’ve missed.  We’re up to 132 tubes of blood and I get 4 more taken in a couple of weeks.  I tried Prednisone for a while.  It helped with the mystery disease pain, but not enough to make the side effects worth it.  What side effects, you ask?  The constant, pounding headache was so bad that I was ready to rip out an eye just so I could watch it thump.  Then there were the sweats that were 5 times as bad as the hot flashes during menopause.  Ask me how many times I wet my pants.  Go ahead.  Ask me.  The answer is that I don’t know because I stopped counting at 10.  Oh my Lord in Heaven, I would hit the restroom right before I left work, drive the measly 7 miles to my house, and then wet myself before I could get the door unlocked.  It’s just like when the farting starts right after you turn 50:  no warning whatsoever.  Needless to say, we won’t be doing Prednisone again.  I’ve also had something that’s been trying to bite me in the butt for the past couple of months.  It finally did it about a week and a half ago.  My digestive system was in an uproar.  I never did have the upchucks, but I sure felt like I was going to 24/7.  I can handle anything except feeling nauseous.  I am such a baby about that, but with all the pain and crud I deal with every day, I figure I can be a baby about something.  I couldn’t stand the thought of eating.  Up until a couple of days ago I was eating bland foods and not much at all.  I finally started feeling better yesterday and ate two bowls of homemade chili from the freezer.  Yes, I lost my mind.  I was so sick last night that I went to bed early.  Wouldn’t you think I would have had better sense?  But I felt fine this morning, made it to work, and am still doing okay tonight.  So maybe, hopefully, I’m finished with this stuff.

So hey, Debby, how’s the book going?  Don’t ask.  (That should tell you everything you need to know.)

In the meantime, I spent several minutes today putting the cash in order in my billfold.  Besides the diagnoses of chronic depression and PTSD, I also have a diagnosis of Obsessive (but not Compulsive) Disorder.  Instead of OCD, I’m just OD.  As you can imagine, having one less initial makes me feel oh so superior.  Ha-ha, not really.  🙂  Anyway, what it boils down to is that I’m obsessive about things being a certain way, but I don’t have to make them that certain way over and over again throughout the day.  For example, someone who’s only OD might have to wash her hands at exactly 3:08 PM every day (that’s obsessive), but not have to wash them every 10 minutes all day long (that’s compulsive).  About the cash….my money has to be in ascending order by amount with the singles in front and with the heads all facing up so they can breathe.  Yep, you read that right.  I have to be sure that all the heads can breathe.   Otherwise, I can’t rest or think about anything else until I fix them.  If there’s change in my pocket, I will have my hand in there, too, making sure the change is stacked with heads facing up.  Again, I have to be sure that all the heads can breathe.

Any tissues in my pocket have to be folded in a certain way and NEVER EVER wadded up, even if they’ve been used.  I always put my socks and shoes on before pulling on my pants.  I repeat every single letter/number/symbol in my head as I’m typing it.  If I don’t do that, then I know that my writing isn’t good and my spelling is worse.  I never pick a coin up from the ground unless it’s heads up so that I know it’s been able to breathe.  When I fold my underwear after doing laundry, I must stack them in alternating solid color and prints order.  When I put them away in the drawer, the waistbands must be on the right side, never left.  My socks must be folded in half, top to bottom, with the heel on the left side, never right.  The various things on my desk at work must be in certain spots and always facing their particular direction.  Otherwise, I can’t work until I fix them.  Want to mess with me at the office?  Move something on my desk and watch me go crazy!  And don’t even think about touching the screen on my desktop or laptop.  Wouldn’t you love to be inside my brain?  Sometimes, it’s really tiring being me.  Fortunately, I’m only obsessive for the way I do things and not for the way other people do things.  I would have to live by myself on an island if I were OD about other people.

A couple of months ago, I received a letter from my therapist saying that she is retiring.

I think I wore her out!

And now, in medical news…..

Ah, yes, it’s been a while since we’ve had a medical update.  But first, let’s catch up the new people on where we are in my medical saga.  It all started in the mid ’80s when I began feeling pain whenever I moved.  Then the tiredness slowly crept in.  I began seeing a rheumatologist around 1988.  A few years later, I had a diagnosis of fibromyalgia.  Fast forward to the last couple of years or so.  I’ve always been anemic.  Now I’m very anemic.  It’s not iron deficiency.  It’s nothing similar to sickle cell anemia.  I can take heavy-duty doses of iron and I’m still very anemic.  I also have pain now that’s 5 times worse than the fibro and getting more and more painful every day.  I take Cymbalta for the fibro and Areva for what I now fondly refer to as “the mystery disease.”  I’ve had 3 biopsies on my head; more CT scans, MRIs, ultrasounds, bone scans, and x-rays than I can count; and then there’s all the blood draws to monitor the numbers and attempt to figure out what in the heck is going on.

I give blood to my current rheumatologist every 2 months because the Areva can do some real damage to my liver if it isn’t monitored.  We also check the SED rate and the C-reactive Protein levels.  I don’t know what the CRP is all about and I don’t feel like checking it out even though I should.  The SED rate is the rate at which red blood cells sink in a liquid solution and is a very good indicator of an auto immune and/or arthritic condition.  The normal SED rate for women is 30 or below, ideally 20.  My SED rate likes to hang out around 124.  The lowest it has been in the last 2 years is 65.  According to my primary care doctor, my local rheumatologist, the rheumatologist at the Cleveland Clinic, and my hematologist, with numbers like that I should be so crippled that I’m either bedfast or in a wheelchair.  I’m neither.  What I am is exhausted all the time, I have little energy, and I’m in some rip-roaring pain from head to toe every darn day of my life.

I have what I call “normal pain days” and “bad pain days.”  On a normal pain day, I can pretty much not think about it.  I’ll still be dead tired and half-lifeless, but I function fairly well.  On a bad pain day, I just want to lie in bed in the fetal position.  I get really cranky.  I hurt like hell and I can feel every little node of pain.  My muscles, joints, tendons, and ligaments feel like they’re on fire and being stuck with ice picks.  It hurts to inhale; it hurts to exhale.  Some days I can’t close my hands all the way.  I can no longer turn my head as far to the right as I used to.  It’s very painful trying to put my hands behind my back.  I can’t sleep on one side of my body for very long because it starts hurting too much, so I have to turn over to the other side.  There are days when I think, “It’s okay, I can handle this.”  But there are also days like today, a bad pain day, when I think, “I’m never going to get better.  I’m going to be like this the rest of my life.  I can’t do this anymore.”  So I have a pity party, feel sorry for myself, cry like a baby, and stuff myself with food that isn’t healthy for me but tastes oh so good.  The next day, I pick myself up and I’m ready to do battle again because I refuse to let the mystery disease win.  If I ever once believe what the numbers tell me, I will never get up again.  So I keep going and going and going.  I’m just stubborn that way.  And lest you all think that my life sucks, it really doesn’t.  I just went to Paris, for pete’s sake!  France.  Not Kentucky.  I work full time.  I go to movies, plays, concerts, my nieces and nephews sports games, out to eat.  I do pretty much what I want to do.  I just have to make sure I take my meds, get enough rest, and don’t overdo.

Anyhow, the latest update is that I gave up several more tubes of blood the Friday before I left for Paris.  We’re now up to the magic number of 125 tubes.  The results showed the usual:  the SED rate is still high, my liver is still fine, I’m still in a boatload of pain, and all is right with the world.  Everything is what is now “normal” for me.  I give blood again the last week in October.

The last thing to do here is to introduce all you newbies to my medical team.  My primary care physician is Dr. Meany.  She is called Dr. Meany because she told me to lose weight.  Ha-ha!  However, she is a wonderful person, a fabulous doctor, I adore her and will always see her until she retires or I die, whichever comes first.  My hematologist is Dr. Dracula.  He’s been known to take up to 8 tubes of blood at one time.  I think he sells it to vampires on the black market.  My rheumatologist is Dr. OhMyAchyBody.  Every time I see her, she checks my mobility and then I have bad pain days for at least 2 days in a row.  But she is an outstanding doctor and always tries to be as gentle with me as she can.  All 3 of my doctors also make me laugh a lot and that’s very important.  Like when Dr. Meany told me to lose weight, I laughed my head off!  🙂

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