Sunday, December 18, 2011

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.

Saturday, December 17, 2011

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 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.

Tuesday, December 06, 2011

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, December 04, 2011

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.

Friday, December 02, 2011

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.