Too Hard?

"I want to try, but it's just too hard!"  These have been the words echoing in my head for... days? weeks?  A while, at least.  I feel like this disease is consuming my heart and soul.  I don't want it to.  I don't want to always be concerned about how much energy I have or how bad a task is going to hurt.  I hate having to think multiple moves ahead just to make it to work every day and home in order to rest.  I wanted to spend the past few days baking and sending Christmas cards, but the days are almost gone and I have yet to accomplish the first step.  My hands hurt as if I've been punching a wall and my body doesn't want to move, let alone stand for more than a few minutes at a time.

I have a rheumatology appointment in a couple days.  I need to make her understand how I have been feeling and how this is interfering with my life.  I don't think the current treatment is working for me. Or maybe it is and I just can't tell the difference between a flare and inactivity.  Or maybe I am one of those 'lucky' people who is constantly flaring.

I feel like complaining is all I've been doing.  I don't want to live that way.  I want to live gratefully, peacefully and happy to live life as it comes.  My brain knows I have so much to be grateful for, my heart doesn't always agree.  My heart is heavy with pain, worry and exhaustion.

I'm doing my best to 'muddle through' this muck, waiting for the light to reappear.  It's just so hard to remember there is light ahead when it's hidden behind all the storm clouds.

Pain Scales... Why We Love to Hate Them

I am honored, excited and humbled to announce that this post was included in the 5th blog carnival at rawarrior.com. Find Kelly Young's take on the "Pain Scale Language Barrier" and check out the 15 other amazing bloggers who were also included here Crossing the Language Barrier of Pain Scales: #Rheum Blog Carnival.

          * * *  * * *  * * *  * * *  * * *  * * *  * * *

       "How are you feeling?"  Wow, that's a loaded question.  It is most often asked by well-meaning co-workers and friends, the people who genuinely care but won't know what to do with the answer if it's honest.  I appreciate the concern for my health and well-being, but it's not often that I feel I can answer this question with complete honesty.  Do they truly want to know how my hips are aching, my fingers don't work and my brain is not computing simple things like it should?  Do they even need to know the details?  If I say I am "okay", "alright" or "hanging in there" that usually works to their satisfaction... they can give me a sympathetic look and be done.  If I were to give even one detail (especially lately, as I've been in a particularly angry flare) I fear they would think one of two things: 1) That I am complaining/whiny/wanting attention 2) They would feel so bad for bringing it up that they would never ask again, thereby making me feel rude and inconsiderate.

       This brings me to the subject of pain scales.  This method of patients physically showing care providers how their pain rates on a scale can be useful... though it usually seems futile and too relative to each individual to matter.  Why do doctors feel the need to see where our pain is at before treating us?  It could be because pain is the body's indicator that something is wrong, damage is happening or an injury has occurred.  The trouble with chronic pan is just that, it's chronic.  It doesn't just happen when we hurt a joint or cause damage... the disease itself is causing damage and wreaking havoc inside.

Sometimes it feels like doctors just don't get it.  They don't understand how any of this feels, physically or emotionally.  They need a visual indicator of the way our bodies are feeling in order to assess the progression of the disease.  Pain scales can be useful to show care providers how we are feeling.

Problems arise when the scales we use are expected to relate to each patient the same way.  Like in the above comic, what happens when my perception of 5 is another person's 8?  What if you have been in severe pain for so long that your body doesn't process it the same anymore... you may say you're only at a 2 when anyone else would say the same amount of pain is a 7!
I think the most effective scale of pain will be if we can keep our own scale, daily, weekly, and at each physician check-up.  If we are only rating the pain we experience in comparison to our own pain it should be more effective in helping to identify disease progression and treatment response.  So long as our physicians understand the differences in our individual cases, scales to rate the pain can be useful.

This could also help me at home.  Maybe I need to put a "pain scale" on the fridge and mark where I'm at each day.  Hmm... this could be the start of some better communication.

I Am Thankful...

for understanding supervisors who allow me to "take care of myself" and take a day of rest when I am sick or just super beat.

I am grateful...
my husband lets me vent when I need to, sleep when I have to and be silent when no words make sense.

I am happy...
to sit in my chair, laptop at my fingertips, content just typing away while my dear husband sits next to me playing a game.  Every so often he glances over with a concerned look and tells me I should probably go back to bed... but I am happy to stay for now.

I am glad...
I can still walk, play fetch with the dog (and cats, haha!), hug my loved ones.

I am thankful...

that even though handwriting is much harder than it used to be I can usually type on a keyboard wth ease and therefore express myself much the same as always.

Sunday Afternoon Musings

Sitting here thinking, asking myself a bunch of crazy questions. I'm thinking about all the people I know who are having or trying to have babies... have I missed a boat, a fork or a chance? Am I lazy or just fearful? Should we have tried to have kids right away instead of waiting "just a couple years" (over five years now), to settle in and buy a house and feel "stable"? Is it almost too late?

I feel old... but still like a child. I do not feel 27, more like 19 or so. In less than three years I'll be 30. Not old, I know, but getting there. How old is "too old" to have kids? Please, stifle your guffaws, but I must confess I have looked this exact question up, word for word in Google and found many different interesting articles. It seems the general consensus is that a woman should try to get pregnant by her late 30's, as once this age is reached there is a higher chance of fertility issues or complications. Everyone is different of course, and it's becoming more and more commonplace for women to have children well into their 40's.

I've never wanted to be an "older Mom". I always assumed I would follow in the footsteps of my mother and grandmother, get married young and have kids right away. I was 22 when we got married. That was five and a half years ago...

Don't get me wrong, I am so glad I didn't get pregnant "too young" or unmarried, like so many girls I see. I am also grateful we didn't have a baby right away because both Michael and I have needed time to grow together in our marriage. Still, I find myself worried over so many different things... will we be good parents? Will I get really sick and not be able to work? Will we be able to do fun things with our kids, seeing as how we are "older"? Then there's the variable of my physical health. Can I even handle being pregnant, let alone have the energy to keep up with little kiddos?

So there you have it. My "Sunday afternoon, sitting in bed resting, trying not to think of Monday" thoughts.

Rambling Update

Wow... it has been one month, one week and one hour since my last post!  No, this is not an exclamation of excitement, more akin to a cringe and shake of the head.  Life has been busy.  Scratch that, life has been crazy, tiring and... crazy.  I am so grateful for my darling husband who replaced our sewer line (saving us at least $2000!), replaced the fuel pump in the truck (saving at least another few hundred dollars), and has been patient and loving with me even as I've been snapping at him out of exhaustion and frustration the last couple (or few?) weeks.

I missed a week of work -minus three hours that I went in and barely lasted- when I was sick last month.  I am truly grateful for my supervisors who are incredibly understanding and supportive.  I'm not sure how I would be able to keep working if it weren't for their grace.

The combined stress of money-leeching household emergencies and lots on my plate at work has been wreaking havoc on my physical and mental health.  I feel like I can't concentrate anymore, as I am always trying to make sure I'm not forgetting something important.

It's December 2nd... just 23 days until Christmas.  I don't feel any spark, flitter or twinge of Christmas spirit.  We are not buying gifts this year, frankly because we can't afford anything non-essential.  I don't have any of my Christmas decorations out because that takes energy, "spoons" that I don't have enough of.  I really hope to find some spirit of Christmas somewhere deep inside, soon.  I don't want to be a grinch.

I want a family.  Not one just made up of felines, canine and husband.  What is the point of doing what we do if not to support and raise children of our own?  Why own a house and work our tails off, if not to prepare for adding to our family?  Mom will be an awesome grandmother.  Dad a super fun(ny) grandpa.  My sweet sister will be darling as Crazy Auntie Amanda.  My brothers, though not living as close, will be happy (maybe thrilled?) to be uncles.  Honestly, I can't wait.  After all, the longer we wait the older we get... and the harder it may be.

These are my thoughts most prominent lately.  Scattered, random and foggy.  Thanks for listening, I will try to check in again soon.

Tuesday... better than Monday

After yesterday's... uh, slightly depressive post, I feel the need to do a follow up.  So here I am, following up...

I have been (obviously) feeling miserable lately.  There have been a few sad events that hit a bit close to home, my body is betraying me again, the weather has changed for the worse and my darling husband's monthly paychecks are getting leaner (we knew this was coming, just weren't sure how lean they would look and it's rather discouraging).  All these things have been added to my life in the span of a couple months.  I feel down, dogged, dreary, disheartened.  It is hard finding the silver lining, the blessing in disguise, the rainbow in the storm.  It's hard and honestly I don't want to have to do it.  But you know, I don't have to.  I don't have to figure things out, make it work on my own, hold myself together... I'm not alone.  When I remember that, things feel a bit easier.  Life feels a bit more normal and I don't feel so much like a failure.

None of us are alone.  No matter how bad and lonely and rejected you feel, there is always someone you can go to in times of need.  We are also not alone in our struggles.  Every day, tragedy strikes.  Maybe not in your life or my life... maybe you will not ever hear of this tragedy, but it happens to someone, a fellow human being.  People die, are hurt, run away... there are so many hurting souls in this world we are never alone in our grief and our pain.

I don't know for sure how many people read this blog, how many of them are people I know and who even really cares about what I have to say.  But I do have some followers which must mean there are at least a few people paying attention, right?  If not that is alright, since a lot of times I just use this as an outlet when I am feeling something intensely.  Whether you are a friend, follower, family member or stranger reading this: THANK YOU.  Thank you for letting me vent, voice my heart, feel acknowledged.  I appreciate it more than you know.

Hmm... does that make me a narcissist??  ;-)

Sad Sick Day

I've been doing my best.  At least, I've been telling myself it's my best... how do I tell what my best is anymore, when it's never the same?  I still get up (almost) every day, take care of the (minor) household chores and (usually) go to work.  But... that's about it.  I don't do anything extra, for myself or anyone else.

Hell, I'm not even sure how long I've been feeling this down... probably only about a week, since I started tapering that 'love to hate drug' prednisone, but it feels like forever.  I feel like a failure, a waste, a sick, fading shell.  What's the point?  Why even try anymore?

These have been my thoughts all day, as I have lazed about, trying to curb the nausea and get through my day at home without losing what's left of my mind.  Oh yeah, I stayed home today.  Barring the nasty details, the nausea that kept me up throughout the night and the aching head and body brought me even lower and convinced me that I'm not "sick", just reacting to the stupid drug taper.

Some days, especially on days like today, I wonder if I'll ever feel "normal" again.  I worry that I'm going to die early, leaving everyone behind.  I wonder if it's selfish to want to bring kids into this life, where their mother won't be able to do all the things mothers normally do.  I worry that my husband doesn't understand and may not even want to understand.  I can't blame him if that's true... who's to say I would not feel the same in his position?  After all, I'm still young, I should still have plenty of time ahead to go on adventures, share the physical labor of yard work, firewood cutting, bed making, laundry load lifting... I should be able to rub his back and neck when he is strained, like he does for me.

I certainly hope to feel better tomorrow... no more sick days for this impatient patient.

Poem

You saved me from

the darkness

and continue

to hold my hand.

You pulled me up

from the pit

of despair

You sold Your soul

for mine.

When I am weak

tired, broken

Your love is all I need.

When I fail

worn, dejected

Your heart gives mine

new life.

Before my heart cries out

for peace

You have heard

the break.

You bring me through

the shadow lands

Your heart sees mine

in truth.

You hold my soul

in loving arms

all I need is You.

Garfield Got it Right

It was certainly a Monday, ALL DAY LONG, beginning last night nonetheless...

The bathtub suddenly filled with "dirty" water right after Michael took his shower, while my load of laundry was rinsing.

We tried numerous variations of plunging, flushing, dumping yada yada yada.... nothing worked.  I started panicking about the cost and how bad it probably was and "Oh my GOSH! How are we going to fix this?!?!"

Finally I was calmed down enough to go to bed, at midnight.... and let my darling husband stay home and worry about it tomorrow (today) while I was at work.

So I go to work this morning like usual - tired and grumpy and sore, like usual - and do my best to muddle through my super long to do list... wait, didn't I finish my list on Friday?!  No of course not, and besides, it's a new week so new to do's.
Hold on, I can't even start on my list because my keyboard is not working!!  I crawl underneath the massive oak desk to find the keyboard cable amongst the rat's nest of cords, cables and plugs... I spend 20 minutes trying to find the cable and make sure it's plugged in, keyboard still no worky.  Arghhh!!!!!!  What the heck!!  Okay fine, I'll restart the stupid machine.  That fixed it, all is working as it should.  What a waste of time I don't have!

Finally I was hooked up, plugged in and ready to get down to business!  Oh good, another interruption, someone needs something... or has a question, or calls me out to the front desk, or asks my opinion on something they should be taking ownership of...yada yada... seriously, a bit aggravating and downright distracting.

I suppose when all is said and done I accomplished the basic tasks that absolutely HAD to be completed today.  I sure hope tomorrow is easier, cause I am not up for another MONDAY!  Today was.. just... too.... exhaustin....zzzzzzz

Aggravated, Frustrated and Just Plain Mad!

I AM SO FRUSTRATED!!

So it's a cycle eh?  Vicious, circling, painful, aggravating.  There is no miracle cure or designer drug that makes it all go away.  The medicines we are given often have nasty side effects and we have to make our choices based on the lesser of two evils.  My current regimen consists of Plaquenil and prednisone prescriptions, with fish oil and Celadrin gel capsules as "natural aids".

I have not yet started any of the "scarier" drugs but in my current state I almost wish I had.  Sure it's only day six of the prednisone but I don't remember it taking this long to kick in the first time.  Of course, my foggy head could easily have forgotten the details, it sure wouldn't be the first time and besides, that was a year ago!

Anyway, so I'm waiting out the drugs now right?  I mean, what else is there to do?  It's not like I can say, "Oh I changed my mind, I don't want this anymore" and someone will magically take the disease back.  Sooo irritating, just waiting!!  I feel like I've tried everything... extra rest (easy for me to lay around all day), light exercise (the walks felt real good but yesterday wore me out!), ice and heat, heat and ice, drinking tons of water, praying... well, I've sort of done that last one.  It's been more like "Please God, I don't know what to do!" muttered through clenched teeth.  Which reminds me... if any of you want to pray for me I would more than welcome it.  I seem to have a knack for turning my prayers into angry rants and then I close me ears and heart to any answers.  Stupid, I know.

Okay, enough of the gripes.  What am I thankful for?  Um, having a hard time not spitting out cliches like "my family, my dog, electricity, food etc..." oh here's one!  I am thankful that my husband is laying next to me playing a game while I vent to my heart's content on the internet.  I am glad he has the heart to be around me when I am obviously "grouchy" and that he is wise enough to not ask me "What's wrong?" when it's obvious.  Just his presence gives me a little more strength and calm.
On that note, good night y'all.  May we all have good long restful sleep and see a better morning tomorrow.  Thanks for listening.

A Great Doctor

       My rheumatologist is a sweetheart.  She shows genuine care and concern, takes all the time needed to answer any questions and put my mind at ease, makes me feel like she wants the absolute best for me.  Aren't these traits something that every physician should possess?  Is there such a thing as an unkind physician?  You bet there is!  I've heard stories of doctors in all fields of medicine, including rheumatology, who belittle patients, making them feel like either "it's all in their head" or it really is no big deal and won't you please stop whining.  I even had the opportunity (only once) to meet with a family physician who made me feel like a nuisance.  Let me tell you, I was thrilled when I found out she was moving to a different practice!

       My point is not to rant about the downfalls of physicians in modern society, nor to steer anyone away or toward a particular physician or medical practice.  The point I am trying to make is a simple one:  DO NOT SETTLE.  If you don't feel comfortable with your current physician, if they make you feel bad about yourself or your symptoms, if their personality rubs you the wrong way, if their bedside manner leaves something to be desired... don't stay with them.  If there is any possible way to try a new doctor, DO IT!  You will never have the optimal results in your medical treatment if you don't feel comfortable with and trust your physician.

I AM GRATEFUL.  I have been blessed with a genuine kindhearted doctor who is helping guide me along this medical journey.  Her soft personality, warm smile and friendly demeanor are a perfect fit for my hesitant, apprehensive, anxious nerves.  I am so glad to have been gifted with a fantastic physician on the first try!  I know many are not as blessed as I and my advice to those of you who struggle to find "the one" is don't give up.  There are many caring physicians (rheumatologists included!) who want only the best for their patients.  I'm so grateful I have one of them.  =)

Trying

I try

to stay strong

to love all

to be grateful

I try

to accept

things I

cannot change

I fail

when I think

of myself

alone

I fail

when I

lose sight

of Him.

********************************************

       I feel like a failure, a nothing.  I am having a hard time with acceptance... of myself and this life in general.  I feel like I am constantly fighting to keep my head above water, to keep my eyes on the shore, to move just a tiny bit closer to the goal.

       Anytime I think to myself, "Yes!  I finally get it!  I finally know how this all ticks!"  I am pounded back into the pavement by a harsh reality... my pain compounds and grows or the fatigue overtakes my brain, my heart breaks or my aching body feels like crumbling.  Literally, every single time I think I'm "getting it" or "getting better" something pulls me back down.  It's almost enough to make a person want to quit trying.

       But... I know I'm not in this alone.  I know there are many, many others in the world struggling with the same struggles as me.  I know my husband and family love me no matter what and they are "here for me".  Best of all, I know the Lord has a plan, a purpose and a reason for my life.  I know He loves me more than I can imagine and that He has never left my side, even when I try to run from Him.

       I will keep fighting.  I'll fight the anger with knowledge, the depression with thankfulness, the self-pity with love.  I won't give in to the enemy who tries to poison my heart with all things dark and dreary.

       The sun (or Son) is always there, even when hidden behind the clouds.

Cold and Hot... Pain Relief?

Summer is finally here!!  I've been awaiting the warmer weather, aching (literally) with anticipation for what seems like forever!  We have had a particularly cold Spring and start of Summer... it's so nice to have sunshine and warmth!  Or so I thought...
Yesterday my body was not happy, angry in fact.  It seems the excess heat triggers swelling of joints and causes incredible fatigue.  Who would've guessed that huh?  Today, much of the same, a bit worse.  The pain grew and sharpened over the course of the day and I'm considering calling the doc, but would prefer to wait things out a bit longer.
Pain is not usually my worst enemy.  Because of this I don't have a regular "pain management routine".  I still have some prednisone and consider taking one but haven't yet.  Ice packs are helping to ease the swelling and pain in my hands but I can't keep ice on them forever.  Usually heat therapy is my best bet for easing the ache, but I guess not when the pain is caused by Summer heat.
Currently I am only taking Plaquenil and diclofenac for treatment.  I use heat to loosen up the joints and ease the ache.  I guess now I'm also using cold therapy when the pain is triggered by warmer temps.  I don't want to take pain medication if I don't have to because I know I'll have trouble rationing myself once I have access to it.  I don't want to "cave" before I "have" to, if you know what I mean.  My rheumy will prescribe something for the pain if (or when) it gets bad enough.  I sort of dread that day.  I hope to God it never comes, or at least not anytime soon.
For now I'll continue my fight.  I'll fight the cold with hot, heat with ice... maybe someday it will all balance out.

How do you do it?!?

       I have been working at my new job for a month now.  I enjoy it still and am grateful for the change.  So far there seems to be less physical weariness at the end of each day, though I need to start exercising since I'm sitting a lot of the time now... I don't get my regular "walks" at work anymore!  Speaking of exercise, how does one fit that in with everything else?!?  ESPECIALLY when your joints are tired and achy and your brain falls in and out of fog almost daily.  I know the benefits of being more active, just haven't yet grasped the HOW to get started.

Now that the weather has finally turned summery I've been telling myself I need to go for walks around town, with or without the hubby.  For some reason it's a heck of a lot easier said than done.  The dog needs a good long walk too, so that should be my reason... somehow I never think of it at the appropriate times.

Maybe someday I will feel more "together".  Maybe someone will show me how to get it all done.  Perhaps there will come a point in time when none of the things I'm worrying over now will really matter.

Thank the Lord for love, mercy and second chances.  Tomorrow is a brand new day!

~ Grandma Gail ~

"This is the day the Lord has made...  I WILL rejoice and be glad in it!"

Three years ago, a stunning phone call... she was gone.  The how, the why... it all escaped me.  Gone, just gone.  I could only have tried to imagine a fraction of the size wave that rushed over, through and around me.  Absolute grief, shock, disbelief... NO was the one word I recall saying.  Days, weeks, months past.  The grief kept hanging on, still to this day it hangs, though a bit lessened.  Slowly, ever so slow, the devastation shrank to simple sadness, bit by bit the anger traded for acceptance.

The one sure thing in this life is death.  There is no way for any of us to fake, trick, bribe or haggle our way out of it.  For those of us that know Heaven's hope it's a little less frightening, though still devastating when we lose our loved ones.  I am grateful I know that someday I will be reunited with those who have gone before.

Thank you Grandma Gail, for your legacy of love, laughter and family.  You are loved beyond words, thought of daily and missed more than you could have known.  I am so looking forward to that Grandma-hug when we finally meet again.  xoxoxox

Just a Rant

I love the rain, I love the cold...

I love the rain, I love the cold...

I love the rain, I love the cold... nope, still not buying it.

The rain and I used to be great friends, constant companions, but in the last few years (or is it months?) my body has become less and less tolerant of the cold and constant drizzle.  My heart needs.. scratch that, my BODY needs some warmth!

I'm trying so very hard to stay positive and simply be grateful we don't have to worry about drought or fires or blazing heat (my body wouldn't be too happy with temps over 90,) but I have just about had it!  When I'm wearing winter sweaters to work in mid July something is very wrong with this picture.  My fingers and toes ache, hips and knees don't move on command, I have to remind myself to stand up and loosen up at least once an hour... I'm getting cranky.  Scratch that, I AM cranky.  I want to whine, cry, kick something, throw a tantrum.  None of that will change anything of course, though it may warm my blood up a bit... hmm... ;-)

Goodbye in Pictures

Knowing the tears it would bring I clicked the link anyway, praying to feel more peace than heartache.  The photos loaded slowly onto the screen, each brimming with their own memories though a mere skeleton of what once was.  It was all there, Grandma's house, though not as I remembered.  The walls are now bare, no family pictures, grandchild artwork, beloved oil paintings.  One by one the photos recalled pieces of my childhood, my history.  There's the aptly named livng room where so much time was spent, second only to the backyard in hours spent growing up.  There was the bedroom we played in, the single bathroom we fought over.  The picture of the kitchen was the hardest to take in.  In striking red and white it jogged the warmest memories and hurt my heart the most.

Grandpa is selling the house.  Since Grandma died (almost exactly three years ago, wow...) the house has not felt like home.  How could it without her?  A part of me wishes I had the means to buy the house.  After all it is the only home that has always been in the same place, occupied by the same people, full of the same love... my whole life it has been "Grandma & Grandpa's house" on the island.

I know this is one of those unavoidable aspects of life... saying goodbye to people and things that have always been there.  I know Grandpa needs to do this and that if Grandma were still alive they would have been selling the house together to make that move they always dreamed about.  I know that if I were to purchase the house it would not make anything better, only be a constant reminder of what once was and no longer can be.  I know that I am still grieving and trying to heal without forgetting.  I know I am not the only one who feels the loss so poignantly, or wishes for a Grandma bear-hug.  I know that she is in Heaven, waiting for us to join her when it's our time.

Saying goodbye is hard, perhaps harder when unexpected.
Saying goodbye in pictures... perhaps a little easier.

Poem

I am human.

Weak
imperfect

broken.

I try

and try

and fail again.

When finally

at
the end

of me

I call

for Him

to save.

I am human.
Beautiful
precious
loved.
When I fall
He picks
me
up.
When I cry
He dries
the
tears.

I
am
beloved.

New Job, New Me?

       I will be changing jobs soon... still working for the same organisation with the same people, though my department, title and responsibilities are all changing come this next month.  I have been offered and accepted a new position in which I will be focusing on marketing and providing administrative support to the various departments.  This switch may not be an easy one.  I am not sure how quickly I will learn my new tasks and feel comfortable in this new role.  The past three years have been spent providing customer service and support to this wonderful non-profit and honestly I have not done much else other than customer service in my employed life.  I'm sure I will do fine, even if I don't know something right away I work with an awesome team of people and we are all quite good at helping each other along.  I really should not be worried about my capabilities.
       My initial reaction was to ignore the opening completely because this position is specifically administrative work, not customer service which I have always done.  I struggled with my decision, talked to co-workers, family and friends, prayed about it, thought my mind was made up over and over again... it was quite a battle within.  Finally I decided to apply for the job when my sister told me to "just do it, it's an opportunity to do something new!".  Though new things normally terrify me and I try to avoid changes, when put into those words I realized maybe the only reason I should go for it was because it was something new, fresh and exciting.  So I applied, was interviewed (a complete nervous wreck!) and was offered the job.  I accepted.
       Since the interview I have been questioning myself.  Not second guessing or regretting my decision, not even necessarily questioning my abilities, just wondering why I decided I needed the change.  My conclusion is a tangled web.  My heart is and always will be, with the people I serve.  The people who "fall through the cracks" of society, the volunteers who have no one else to talk to, the families who see us as their only safe haven.  My heart is for these people and I am a bit sad to know I will not be working as closely with them on a daily basis.  Having said that, I am excited about my new position.  I am glad (though scared,) to be going outside of my comfort zone and expanding on my knowledge of our organisation.  I am ecstatic to be working for one of the sweetest, most caring and helpful women I have ever met, and almost cannot wait to start being her "right hand man".
       Why would someone like me, shy, cautious, easy-going, want to go so far outside my safe zone and work in a department so different from what I am used to?  Why would I put myself through the mind-blowing stress of the application and interview process when I already have a good job that I love?  Why rock the boat when I have the perfect schedule, a fantastic supervisor and awesome co-workers?
       As I have pondered these questions the past couple of weeks I've come to a realization... my current position is good, I love the people, I love my hours, I believe in our mission.  My current position though is basically the same type of work I have been doing for the last 10 or so years, customer service and help desk.  There comes a time in everyone's life when they must choose between the same and the new, the familiar and the unknown, the current good and the new better.  I surprised myself this time, I chose the new... and I'm glad.

Lately...

     I've been exhausted.  Not just tired, worn down or burned out... EXHAUSTED.  The immeasurable fatigue drains all energy.  I feel like there is concrete in my veins.  My mind is murky and my body slow and creaky.  I have been trying to let myself rest when I need to but some days there just are not enough hours.  I feel like I could literally sleep for days.  Part of my issue is known and part is still up for debate.  I have been doing a lot of research and learning all I can.

     A blog that I found through Facebook has been a Godsend.  "Sunny Side Up" is written by a Christian woman in her 30's with RA.  The encouraging words and information I have received from her site are invaluable.  I, like her, am living with an "invisible illness".  Seronegative Rheumatoid Arthritis is only different from regular RA in that the patient does not test positive for the "rheumatoid factor".  All the usual RA symptoms are present... the joint pain and swelling, stiffness, full-body fatigue... it's like living in a cloudy bubble.  I am grateful to have a place to go where people understand when I say "I'm exhausted" or "not having a good day".  It is good connecting with people who are dealing with the same feelings (emotional and physical) as I am.

 

     I am trying to learn to take care of myself and "roll with the punches"... trying to learn how this disease ticks and how to keep the peace between it and my life.  I know there is still a lot to learn and that I will never fully understand what no one fully understands.  There may be certain triggers I can avoid but mostly it is not entirely logical.  Flares come at the most inconvenient, unexpected times.  When dormant there is still often the monstrous fatigue that plagues the entire body.

     I will learn.  After all, I guess I have the rest of my life to get the hang of it, right?  ;-)

Baby Miranda... and gratitude

     I just finished reading the story of Chad Cole, his wife and baby Miranda.  I cried, hard.  I cannot imagine the devastation of losing your best friend and life companion in an instant, then days later saying goodbye to your newborn baby.  Many people, myself included, would want to give up on life after experiencing such a heart-wrenching series of events.  But the power of prayer is so much bigger than our broken hearts.  This man has been drenched in love and support from thousands, many of whom he has never met.  Through the grace of God, Chad was able to sweetly sing goodbye to his daughter, letting her go quietly into Jesus' arms.  Thanks to the millions of prayers sent up on his behalf Chad is able to remain "clinging to the Rock".
     The power of prayer is unyielding.  God is so much bigger than our emotions, our grief.  He knows each tear that falls and He hears us before we even call out for Him.

     Before reading this emotional story I was feeling sorry for myself.  I was dwelling on life circumstances, wishing we were more financially secure, wishing I felt better, wanting our house to be perfect... I was focusing on things that I wanted changed instead of thanking God for the good He has provided.  My heart was clouded with ungrateful mutterings and envy.  I needed a reminder that my life is full of blessings and the Lord truly does have a plan.

     We may not live in the best house, but we have a roof over our heads and it is "home".  I may not always have the energy or motivation to complete my to-do list, but I have a loving husband who picks up the slack when I'm down.  I lost the "best Grandma in the world" a couple years back, but I have an angel in Heaven awaiting me with open arms.
     I often look at what others have and wish I could trade a little piece of my life for theirs, but why bother?  Everyone has blessings, everyone has their own gifts and weaknesses.  Every one of us is given individual trials, not one life the same as another.  We are all blessed, beautiful and beloved.  In the end we are all the same... loved, beautiful, chosen.

Addict

     I used to be am an addict.
     At seventeen I started smoking.  Don't ask me why because I truly don't know what prompted me to make that choice.   It was not about being "cool" or fitting in.  I wasn't trying to kill myself or get attention.  I was rebellious and self destructive, trying to grow up in all the wrong ways.  Never did the thought of long-term consequences cross into my diluted mind as I was filling it with chemicals.  I wasn't considering the fact that although I didn't want to be addicted, the chemicals were causing a reaction that would be impossible to duplicate without cigarettes.  The psychological effects also took hold with that very first drag.
     Now, nearly ten years later, the cravings still catch me off guard.  Not every day, not even once a month... but sometimes, when I smell fresh smoke, drink my coffee, have a bad day, or even when a quit smoking ad comes on the television... the irrational and nearly irresistible "need" for that hot nicotine stick takes precedence over any rational thought I may have had.
     Not since 2007 have I given in to the urge.  The cravings are strong but I remind myself that giving in for just a little fix is not worth it.  Not worth the pain I would cause my family, not worth the embarrassment of having to admit my deadly mistake once again.
     I wish I could say the cravings are easy to deal with, simple to ignore, but they are rather intense.  There have been a few times I was so close to caving it frightened me.  Sometimes there doesn't even need to be a specific stresser.

Maybe someday I will be free of my cravings, my nasty addiction.  But then, are alcoholics ever free from their addiction?  Do they ever truly "get over it"?  Does an alcoholic ever stop craving a drink every once in a while?  I think not.  I believe our addictions are always with us, constantly lurking.  We are all humans, every one of us fallen.  Our old nature wants us to give in, make ourselves feel good, take the easy way.  We don't have to give in.  It doesn't matter how strong the urge, how terribly we feel we need something.  Every one of us has a choice to make.  I will continue to make my choice.  I'm sure I will continue to be haunted but I will continue the fight.

Honestly

       You know, sometimes I feel like a failure.  Sometimes I don't think I'm a good wife.  I often stress about stupid things, things that really will not matter in ten years... or five years or five days.  I have a weak spine and a worrying gene.        There are days when I forget to put away the dinner leftovers and they go bad, days when all I really accomplish is being awake for a few hours.  I often make promises about things I will do and when the day is over I realize not one of those tasks is even started.  There are times when my heart drags to the bottom of my soul, times that I wonder if the light will ever again penetrate the blackness.

       You know, sometimes I feel like a winner.  Sometimes I know I'm a good wife, a beloved daughter, a special sister.  I am able to remain calm in the most adverse situations, I know the small stuff is not worth sweating.  I have a strong will and a tender heart.
       There are days when I know I have accomplished all I need to and I go to sleep quickly and peacefully at night.  I have times when my heart soars in the clouds and my soul sings with joy.

       I have learned that I am an excellent faker.  I show one thing on the outside while feeling a completely different one inside.  While I have my own very strong opinions, I often suppress them until I find if they are common to others.  When my temper boils too hot I can say the most hurtful things, instantly, without thinking it through... and rarely feel remorse until the heat dissipates.  I hold grudges tightly, silent and stealthy.  My heart clings to the familiar and I hate letting anything go.

       When people compliment me on my friendliness and calm demeanor, I laugh a little inside.  If only they could see what I really feel!  Sure, I truly care for people and I do have the ability to calm myself in stressful situations.  I like making people feel special and taking care of the ones who have trouble taking care of themselves.  But when told that I am special and admired for these gifts, I wonder if I should accept the praise?  Should I tell them that I know how to "fake it" really well?  Should I mention that I have tons of practice at making myself look good?  I never do admit these facts aloud.  My fear of rejection halts any honest outburst.

       Maybe someday I will show my true colors.  Perhaps at some point I will no longer care what people think of me and I will simply be myself.  I suppose it's true that you "live and learn", so long as you allow yourself to make the mistakes necessary to learn from.