Wednesday, May 09, 2012

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.

Tuesday, March 27, 2012

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.

Thursday, March 01, 2012

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!

Sunday, February 12, 2012

"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.

Tuesday, February 07, 2012

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?

Tuesday, January 31, 2012

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".  :-)

Thursday, January 26, 2012

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.

Thursday, January 12, 2012

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.)  ;-)