Sour Mood Ranting - or... Terrible, Horrible, No Good, Very Bad Day

Tonight is probably not a great time to make a comeback. My mood is awfully sour today. My head is full of angry words and my heart palpitates with bitter angst. I hope if I let it all spill out it will stop growing.
Why am I ready to fight, waiting for someone to make a wrong move so I can feel "justified" in my attack? I'm not even sure. Maybe it's the steroid withdrawal (yeah, I've been tapering off the prednisone), or my cold still keeping my head clogged and throat scratchy and keeping me up at night. Maybe it's the realization there's no way we can afford me to take a vacation this year, and I could really use a week at the beach or in the mountains! It could be hormones. Perhaps I'll feel back to normal in a few days and none of this will even be relevant. Maybe it's something to do with feeling financially poor and seeing no way up anytime in the near future. I don't even think I can take enough time off work to have a baby! No I'm not pregnant yet, just trying to plan and not feeling very optimistic about the future. (Like I said, today is a super sour mood day and I probably shouldn't even be writing...)
I know part of what sparked my aggravation was realizing that social security recipients received a 3.6% cost of living increase this year. While I understand the great need for it, my bitterness at the whole thing stems from M. taking cut after cut to his pay, with only more downward spirals in sight. First it was cost of living (COLA) raises being stopped a couple years ago. Then furlough days (days of no work and no pay) were given "Just for now until the economy recovers". Then the big kicker, he was "laid off" during the summer for 3 years, starting last summer. We have two years left of that crap. When (read if) he goes back to year round employment, the higher cost of health insurance will most likely make up for any extra money we're bringing in and we will be... you guessed it... where we are now. Struggling. Barely making it work. Our dream was to own a home before starting a family, but now that we're stuck in a house that is worth less than we owe I wonder if we would be better off renting. Maybe we just need to move out of this high cost, liberal state. Preferably taking my entire family with us.
There's no use wondering "what if" or even "if we only had the money..." since those statements don't change an ounce of reality. I'm just feeling wishful. (Actually, I'm trying to feel wishful rather than angry and bitter.)
I suppose I should be focusing on the positives, like how good it is that I got a raise this year, or thank God we both still have jobs! While I recognize how blessed we are in many ways, that bitterness is still hanging on. I'm trying, really, to let it go. Though it may be the only thing keeping my heart alive right now. I'm so afraid of falling into apathy, the depression I know so well.
Lord, please help my heart let go. And TRUST.

God's Will Be Done

     The other night I was reading my Bible. For the first time in... a long time, probably months. I had no idea where to start, what book would best bring the knowledge I was searching for, so I ended up (as I usually do) in Psalms. It may be the poetic, musical quality, or the way I feel akin to David a lot of times, but Psalms always reaches the deepest in me. I browsed for a while, not stopping too long on any one passage, when finally a verse caught me. Psalm 27:14 "Wait for the Lord; be strong and take heart and wait for the Lord." I read and re-read the words a few times, pondering their meaning, soaking it in. They gave me a reason to rest, to stop the worry.

      Then I started thinking...  why is it so hard to say "Your will be done Lord"? Hold on, rewind. Maybe I should ask first, do any of you also have a hard time saying this? I have realized very recently that when I pray or talk to God at all, generally I am asking for strength, peace or comfort. Sometimes I ask for healing or courage for a friend or family member and often I am just saying a simple, heartfelt thanks for whatever good thing has arisen or burden has been lightened. But rarely (read "never") do I say directly to the Lord "Your will be done". What is so scary about these simple words?

      I have a theory:

I am selfish. Close-minded. Stubborn. Scared of being challenged. Mistrusting of His plan. If I "give in" and let God do what He wills, I am opening up to more hurt, more challenge and less time in my comfort zone.

      

I know in my head that I can trust my Lord because He is the One all-knowing, all-loving King of Kings. I know His plan is best and I cannot fathom how great, wonderful and all-encompassing it is. I know... but I still doubt, am weak and want easy answers. Lord I believe, please help my unbelief.

When Playing Hooky Isn't Fun

     Days ago I had great plans of composing all these insightful, inspired posts, brought on by some deep thinking and random reading I've been doing. Then... the flare hit...

I was in bed from 3 pm Saturday (when we got home from shopping and I crashed on the bed, shoes and all) through Monday night. It was ugly. I was ugly. Aching body and swollen hands literally had me down for the count. My hands hurt so bad I couldn't drive, let alone type or use my computer mouse at work... so I stayed home, and slept. All day. I felt so guilty. Tried to talk myself into attempting to go but couldn't muster the energy or coordination to even get dressed.
     Days like that are just pathetic. It feels like such a complete waste. I felt guilty for missing a day of work and I hate loath the fact I had to stay home because there is so much left to do this week and only one day left to do it in. It's incredible how behind you can get by missing one measly day of productivity, amazing how a few bad (or completely awful) days can completely change how you look at the world and make you think about where roads are taking you. It's sad how one "failure" (or flare) can bring you to the pit of guilt and self pity. Yuck!

"Rest" ~ A beautiful concept

It's been a relaxing weekend. Starting with dinner and quality time at Mom and Dad's on Friday, followed by lots of sleep, movie watching and lazing about yesterday and most of today. It has been good. Good for my mind, body and soul. Good for our marriage, our relationship, though a little hard on our house since there is housework to be done... but oh well ;-)

My physical symptoms have been quieter the past few days, even the fatigue has been muffled, not overpowering like before. I'm pretty sure I had the energy and physical ability to accomplish at least a couple "projects" around the house, but I chose to rest, relax and laze about. For half a second I felt guilty about this. Yikes, I am lazy!! But I didn't let myself feel too bad for too long because sometimes, when you're living with chronic pain and fatigue, when you're working all week long and feel like you're just barely making it through the week... sometimes you just need to rest. Whether in a flare or not, if the body doesn't get the rest it needs periodically, it will eventually make you give it rest. Besides, one would think (hope?) that if one gives the body enough rest when not in a flare perhaps the flare will wait or at least be less severe.

So, here's to rest, relaxation and the weekend reprieve. May you (we) all feel rejuvenated for Monday.

Winter Can't Last Forever

Before you read this I would like to say... please don't see this post (or any of my posts for that matter,) as simple ingratitude, whining or lack of wanting to do what I can. I am simply describing my feelings and doing my best to be honest. It's actually very therapeutic, so THANK YOU for letting me vent!  =)

This last weekend was pretty lame, as in, I was pretty lame. I filed our taxes on Saturday and then proceeded to clean out and organize the filing cabinet. I made it so far as spreading piles of paper all over the floor and then crashed. I barely made it to the bedroom to fall onto the bed. The remainder of the weekend was spent mainly in bed, sleeping and watching television. I had zero energy, hardly any strength and an incompetent brain. It was bad.

Fast forward to the work week... I feel like I could sleep for a literal week. I have a list of things to get done at work and a house that needs tending (not that Michael doesn't help me out, but it's not quite the same as me doing it and besides, it's "my job" as a loving wife) but I can hardly stay focused or muster the strength so only the absolute priorities get done. I suppose today was a good day at work, though I think the cutting, reaching, climbing and stapling was a bit much. About halfway through the day I started to crash. Thankfully I only had desk-work left to do so I spent the majority of the afternoon sitting down. By the time I made it home my whole body was aching. I almost cried when I remembered it was only Tuesday!

I keep hoping and praying that this is only a season, a bump in the road, a trial that will not last forever. Something's got to give, I have to make it out of this valley to the real world once again. I know God has promised a new life after this broken one, but frankly I hope I don't have to wait until then. We're not in Narnia and Winter can't last forever, right?

When Good News is Hard to Take

Saw my rheumatologist today. We talked about my back pain, stiffness and decreased range of motion. We talked about medications and effects, fatigue and exercise. She sent me downstairs for x-rays of my spine, "just to be sure" and gave me a referral to physical therapy. If nothing abnormal shows up on the x-rays I don't need to see her again until April.

I feel... deflated? Elated? Relieved? I realize it's really good news that my spine is (most likely) not affected by the rheumatoid disease. I am glad to not be adding any new medication and happy that I am actually able to decrease the prednisone by 2.5 mg. So why the hesitation? Why the anxious, unsettled, drowning feeling? Am I just waiting for the other shoe to drop? Do I really wish my spine pain was inflammation due to the disease? Why would anyone wish for that?!? I know, because it's a definite answer. It is a for-sure reason for the horrific pain that has come and gone the past few weeks. I don't want to go to physical therapy to "learn how to manage". I don't want to have another medical facility get to know me by name and expect to see me regularly. I don't have time for that! I just want a quick answer and treatment, and then to get on with my life. But I suppose, this is my life now. I just need to accept the facts and do what I can to learn, cope and live well.

Wish me luck. Or better yet, pray for me to quit being a whiny baby and "just do it".  :-)

Mostly Disheartened, Slightly Amused

So discouraging... the continuous surprises that come with this dumb disease.

I have been getting awful pain in my upper back, starting about a month ago. I just woke up one morning and it was stiff as a board and sore. Being that this was a couple days before Christmas I didn't want to deal with making an appointment or trying to fit in getting to the doctor's office so I put it off, telling myself it was probably just how I slept or really really sore muscles. It took a few days but I finally healed and put it out of my mind. A week or so later, same damn thing! This time it didn't last for quite as long and I did my best to ignore it. Since then I have had the same pain a couple more times, lasting for a few days each time.

Today I couldn't get out of bed. Well I guess I could, but it felt like my back was breaking. Michael went to work with the promise of coming home soon to take me to the doctor. I argued (of course) and tried to convince him and myself that I would be fine and just needed to rest a little before going to work (disregarding the fact I couldn't turn my head to drive myself). He didn't buy it so after completing his pressing tasks he came home and drove me to the walk-in clinic.

After checking my range of motion and a series of open-ended questions, the doctor said "You know, it really sounds rheumatoidy." Yes, she said rheumatoidy. (I had to suppress my giggles.) Anyhoo, she called over to the rheumatology office to see if my rheum doc wanted anything else done. She came back with instructions to up the prednisone and said my rheumy wanted to see me within two weeks. (Don't worry, I made an appointment for Tuesday. No more trying to ignore this.)

So the verdict is what? I guess the RA is now causing inflammation of my thoracic spine. Or perhaps I just strained it incredibly and it hasn't healed and is mimicking rheumatoid disease symptoms. If it is the RA... I feel pretty cheated. I thought I has years before I had to worry about crippling pain like this. I thought... well, guess I thought wrong. Bummer.

Still Kickin' It

Don't be alarmed... I'm still here. The last month (geez, it almost has been a WHOLE MONTH!) has been hard, busy and full of exhaustion. Awful brain fog is now one of my constant companions and I just couldn't bring myself to type out any of my feelings. I don't have much left in me from today so I mean to keep this short (haha right?).

Today was one of those "I can't do it-let me stay in bed-I feel like death warmed over" kind of days. I made it to work and muddled through, trying to stay mobile and alert enough to be productive. (I think I managed to be productive but honestly it's all kind of a blur.) Anyway, about halfway through the day we got a surprise visitor... a beloved former co-worker stopped by! CB has been and always will be one of the most inspirational people I've known. Her love of life, people and God radiate all around her and you can't help but smile when she speaks or simply looks at you. She has breast cancer that is thankfully responding well to treatment. Her attitude caused the pivotal moment of my day. In her own words, CB has never been a "pity party person". I wish I could say the same, but sadly tend to do a lot of wallowing, stewing and pitying. Even as I'm putting on a stoic exterior and "braving it", inside I'm feeling sorry for myself, wishing things were different and on occasion, crying "why me?!".
There CB sat, explaining her progress, describing her daily life, talking about how she feels, happy to simply be alive. At one point she said something to the effect of "There are days I wake up, the sun is shining and I'm so happy! Then I think 'oh yeah, I have cancer... oh well!' I mean, what can you do?". That statement... the acknowledgement that she has a "terminal illness" and chooses to get out of bed and have a good day anyway... that is what caught me in the heart. "Hell, why can't I do that?" was my first thought. Then I remembered... I can! It's all a choice... the mental part anyway, not necessarily the physical stuff. But why must we let our physical state dictate our attitude? There is always something to be thankful for. Sometimes you have to look under rocks, behind clouds and in valleys to find it, but there's always something.

I have an incurable autoimmune disease that often makes me feel like... for lack of a better word, CRAP. I also have about a billion things to be thankful for and could easily name a hundred of them if you wanted me to. (Though I may have to write them down so I remember. Brain fog you know... it's killer.)  ;-)

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.