Friday, February 27, 2015

on bodies and answers, on body love and the flip-side of hope

This is an introductory post...a topic I've covered it has evolved (or I have).  I want to write a much more substantial post in the future.  But I also want to get some of this "on paper" ("on screen"???) ...and out of my head.

Element One:
I believe that learning to love and accept (but mostly love) our bodies is a crucial component of finding joy and becoming an adult...esp for those with food and body issues in their past.  Learning, truly learning, to love your body is one step towards wisdom.  For me, this means appreciating my body for all it can do.  And it COULD do crazy things (I'll talk about my half marathon till my final day).   But now..

How can I love a body that only seems intent on making me suffer?  That threw (visible) hives at an already awkward junior high student who had to bring a whole box of tissues to school b/c she went through that many?  Then the endo. Then the back.  Not to mention the low functioning immune system.  How do I love this??

ASIDE - Of course, people have it MUCH worse.  But that doesn't actually take away the problem.  I'm good enough at guilt so please don't leave me with more (i.e How can you complain about back pain when people are dying?)

Element Two:
I don't tend to   get excited about things, which is weird and a bit sad.  But I also don't tend to get anxious.  So the terror-level fear I'm feeling about the surgery in May is unusual for me.  I have thought I needed revision surgery for years now.  It has been where I thought we'd end up, even as i plodded through non-surgical options.  I've been waiting; now I am formally waiting since it is formally happening.  This is it.  The Answer is coming in lat May


What if....

it isn't?

What if this doesn't work?  What if my pain is still there?  Or worse?

I've had trouble with food lately.  Mini-binges (see:me on BED, eating disorder group on BED, same group on formal inclusion in diagnostic manual).  And with working out, I've ricocheted from feeling unable to move because i can't get motivated to feeling unable to move because i way overdid it.

It took time till I connected the dots.

I know I need to stay positive.  I DO believe it will work.  But the "whatifs" (I imagine scrawny little furballs) are whisperring in my ears

Wednesday, February 4, 2015

Rambling: Where I'm At On My Medical Journey. Preparing for Revision Surgery on My Lower Back

Three and a half years out from my first journey through back surgery and I find myself preparing to return to the OR.  I'd seemed to be on track for about six months after the fusion surgery that was intended to fix severe pain in my lower back.  The doc had confirmed that the disc at L5/S1 was "mush" and the likely source of my pain so I was hopeful that once I got through the long recovery I'd be returned to a normal life.  Needless to say, that didn't happen.

I've chronicled some of the big moments in my journey and I won't repeat them all here.  When the pain returned full force, I sought help from several doctors and tried a wide range of non-surgical interventions (injections, nerve ablation, acupuncture, etc).  None worked.  In the fall, I underwent an invasive and difficult test that confirmed my pain (disabling and hard to manage even with substantial medication) stemmed from the original operation site.  The verdict is pseudoarthrosis, a fancy way of saying the fusion did not take completely and I'm unstable which is the presumed cause of my pain.  There's a particular cruelty to the knowledge that it all traces back to something we thought we'd fixed back in August 2011.

I'm scheduled for revision surgery in late May, although I'm on the list to be called in the event a spot opens up earlier.  My doc, a different one from the first operation despite the fact that all the medical folks say it was not an issue of poor technique (several have even praised the first doc, despite the bad luck I've had with my bone not fusing fully), will go in through my back and place hardware that should steady my spine and hopefully eliminate or greatly reduce my pain.  The surgery should be a bit easier than the first, but it's still a major undertaking and I'm expected to spend 2-3 days in the hospital.  Despite not being able to work, I asked when people usually return to desk work to get a sense of the recovery (the first time the doc wouldn't talk about it till the 2 month mark) and it sounds like 3-4 weeks is the typical timeframe.  They were a bit thrown by me asking about returning to aquacise but it sounds like a 2-3 month period of being sidelined there.

I swear that my pain kicked up a notch since we scheduled the surgery a couple weeks back.  While I've thankfully not had to place my pain on a 1-10 scale for a bit, even medicated I'd rarely had a day average less than a 7.  This week, it's closer to an 8.5 or 9.  I soldier through, I complain a good bit but I try to live as much as I can and resist the urge to hide in bed....although sometimes that would be better for me.  I can hide it when I want to, although I am pretty honest with those I see regularly.  I still walk daily...I'm stubborn and although it can mean a nasty bit of rebound pain when the endorphins wear off, I think it is important to keep my body in the best shape possible.  And I'm vain.

Pain is a difficult beast.  It is a physical and a mental matter; exhausting is an understatement.  Until you've lived with chronic pain, you can't fully understand it.  My Military Man husband does his best to help and I know it is frustrating to watch helplessly when I cry (at this point, I think I've worked my tear ducts to their limit...I call it crying sometimes even when my eyes are dry).  I am so thankful for the patience and love of my family and friends, esp those on the "front lines".  I try to remember that I look "normal" and not get mad at the little moments, like when no one helps me lift a 12 pack of sodas into my cart and people seem inpatient when I'm slow at such tasks (I should ask for help, I don't).  The invisibility of pain is one of its biggest obstacles and I could write for days on the subject having faced the endometriosis demon in addition to the back issues.  Likewise frustrating is the tendency of society to assume that pain is all equal -- if Motrin helps and if you can recall what it is like to not feel pain, it is a different beast from chronic severe pain.

That's my ramble for the moment and an update for anyone who might be curious.  As usual, it took all I have right now to write this and I can't imagine a solid re-read so please forgive my grammar and any errors.

One more note -- If you've found my little corner of the Internet because you are on a similar journey or watching a loved one face a similar beast, just know you aren't alone.  Pain is a very individualized demon, but many emotions are shared from the feeling that you can't possibly face another day to not knowing what else to do but take it one breath at a time.  Know that you know your body best, never let a doctor dispute that.  Remember that accomplishments are relative...if all you manage one day is getting the credit card bill in the mail box, that may be a feat comparable to putting in an extra long work day and finishing a major project.  That's one of those things that is tough to explain to a non-patient and it often feels like no one understands, but you aren't alone.  Know that there are others who know how much it takes to just put one foot in front of the other.  It's a journey I wouldn't wish on anyone, but I still find it helps to know it isn't just me...