back update...a surprise and some hope

While it's Endo Awareness Month and I want to keep up with those posts and highlight that health issue, I am overdue in sharing a back update.  Even though I know most of my visitors also read the update on Facebook, I want to ramble a bit here for anyone else who may wonder and for people who may looking for proof they are not alone.  I also think it is good to have a pretty full record of this back journey for both medical and mental reasons.

In September, a year and a month after my spinal fusion surgery, my surgeon took some x-rays.  I'd been in excruciating pain since February (six months post-op).  I'd been in PT and things felt like they were moving in the right direction when they took a very sudden turn and landed me in what I call an "all-but-bedridden" state, even with a good bit of pain meds (which I am sick of...and sick of having to justify....give me a real solution and I will be ecstatic to be free of the meds).  The x-rays showed there was no bone growth (the goal is to grow bone to fuse two vertebrae).  The doc suggested one more type of image and then a revision surgery.  I needed a 2nd opinion before committing.  It took a while but I saw a new doc, considered an expert in the field and in revision work, in late November.  He had a similar reading of the x-ray, noting it is a very rare result (original doc said only 2% fail to grow any bone with the process used).   He did say the surgery was well-done, that it was a result they couldn't really explain. 

While he leaned towards a similar revision surgery answer, he wanted a CAT scan.  There was a long insurance-related delay (frustrating at the time, oddly a good thing in the end) and I had the scan in late January.  I eventually got a note from the new doc with completely unexpected news....the bone was now there.  It took a bit to get him on the phone, but he said it appeared to have grown in between September and January.  He mostly dismissed me from his care, which does make sense since surgery wasn't looking like the right answer.  I was still, however, in as much pain as ever.

I eventually talked to my original surgeon and Dr. Dad.  They agreed that there was bone growth, although they said it was just starting (the other doc suggested it was complete).  The clearest statement given was that I'm "a late bloomer."  Apparently that 2% failure rate is at TWO years, not one.  I was definitely behind though....I looked like a patient might be expected to look at 3-4 months post-op (the films were 17 months post-op). 

My pain has NOT changed.  I tried a day without my supplemental pain meds and the pain got so bad that I can't even remember the day much at all.  I know I was back to finding TV too challenging for me to handle.  I clearly do still need the supplemental meds, even then I'm in bed the VAST majority of the time...it still hurts in bed, but it gets horrid if I do too much.  However, the original doc has held out hope.  He thinks that I will heal, that it is just behind schedule.  He said he expects to see a huge improvement in about a six month time frame.  With the current progress, I definitely should not be looking at surgery.  Until the time passes, I just need to do what I can to manage the pain.  Keep on keepin' on in my own lingo. 

So, there IS hope.  And that is GREAT.  Six months still feels VERY long (though the calls were a couple weeks ago...so maybe 5.5 months??....okay, I know it isn't an exact miracle date and could be a bit sooner or a bit longer).  But I've made it through over a year with this insane level of pain and very little hope.  It has to be easier with a light at the end of the tunnel....

Endometriosis Month: The Physical Side

Once again, the ever-amazing Jamee has organized a Blogging for Endometriosis Month.  I am hoping to join in, but resolve to do what I can and be accepting of that.  Which is, actually, a key lesson for anyone facing a chronic illness.  My life is not the same as before and, the truth of the matter is, it may never be.


As an initial move, perhaps cheating, perhaps energy-saving, I am linking you to my post from last year on endo's physical side.  For more details on endo generally, check out one of a very small number advocacy sites for their explanation (with diagrams) of the condition. One last "pimp my blog to folks already on my blog" note, the is my story for Fight Like a Girl, a group for women fighting life-threatening and/or life-altering conditions.  It is largely focused on how long I waited to speak up about the increasing problems I was having and the eventual endo diagnosis.

Over the past twelve months, the problems related to my back have compounded.  Details are for another post, but the back pain has led to a tough medication regimen including one scheduled pai med and one unscheduled (I can have 0-3, most days I have 2.....I experimented with 0 yesterday and spent today regretting it and back in the stare at the ceiling mode).  Endo has not been at the forefront of my mind, and the medication regime for the back is absolutely also helping control endo-related pain.

BUT, that doesn't mean the endo is gone.  That's the thing about chronic diseases, they linger.  They sit there, at times in the background, ready to pounce at any moment.  Every few days it pops up for notice, despite the fact that I'm on enough pain meds to kill some people.  At one point, I missed two doses of the BCP in a row (I take continuous birth control, no placebo week, it helps keep my hormones steadier and limits the endo symptoms, I do not get periods).  Two tiny missed pills led to days in fetal position (spotting too, for those who care to know....).  The error led to endo pain that "beat" the back pain....and there's rarely a day the back doesn't hit an 8 on the pain scale (1-10. 1 is no pain, 10 is the worst possible).

So, for me, endo is currently a lurker.  It is waiting to bite if my hormones shift (even being around other women long enough confuses my pheromones and can cause spotting or some pain).  It is waiting to bite if (no, let's go with WHEN) I stop using the pain meds for my back.  And I remember all too well the days it took my words and knocked me off my feet and left my crying on the floor.  It comes and goes, and I am pretty certain there will be more fetal position days to come, and days spent educating people who say I look perfectly fine.  That's life with endo. 

(NOTE: I am not having luck with the Blogger Link-Up button, but check out Jamee's blog for her post and link to other bloggers participating in a group effort to spread knowledge about endo and its impact.)

Book Review: The Cutting Season by Attica Locke

I keep saying that I'll pick back up my reading speed, but I continue to feel too worn down to focus as well or as much as I'd like.  I suppose the good side is that I have a "to read" pile and am not fretting about being book-less (an odd comment given the "library" in the basement....I do believe in re-reading, a position eased by a limited memory).  This one was slated for reading in the fall, but late is better than never!

• The Cutting Season by Attica Locke

Mystery isn't one of my most-loved genre, but I have a great fondness for novels with a sense of place and that is what drew me to this novel (provided by the kind folks at Harper).  The setting is Belle Vie, a former sugar cane plantation turned tourist attraction and event space in Louisiana.  Caren Gray traces her family back to field slaves, including one who stayed on after being freed following the Civil War and disappeared in a never-solved mystery.  Caren's late mother worked at Belle Vie and, along with her young daughter, Caren has returned to serve as the site's manager.  The novel opens as a body is found in one of the preserved slave cabins.  The victim is later identified as a migrant cane worker employed by a neighboring farm recently taken over by a large corporation.  Caren grows interested in finding the murderer, in part because the police are focusing on an employee that she believes is innocent, and also in uncovering more about her own roots.  In a side plot, Caren's ex-boyfriend arrives because of their shared concerns for their daughter's safety, pulling complex feelings to the surface, emotions heightened by his approaching wedding to another woman.

This novel earns 3.5 stars from me, a rating I am inclined to round down to make the "full star"-only sites happy.  Locke is clearly aiming for social commentary in the novel, both relating to our view of the past (emphasized by the play put on daily that shows slaves who love living and working on the plantation) and commenting on the current world of migrant farm work.  This gets a bit too heavy-handed and overt, she's trying to show rather than tell but it needs some work.  The mystery element was above-average, better than some typical detective stories and well-related to the other elements of the story.  The sense of place was a plus. It allowed me to visit a distinct region, but I still felt it had some room for improvement.  As for relationships, I wanted to see more of Caren's daughter and less of her ex.  It also felt like some characters were tossed in, there for color (that's not intended to refer to race) and not fully rounded.  Overall, the highlight of the book is Locke's talent for crafting language.  She writes beautifully.  I can't decide if this is praise or criticism, but my ultimate verdict is on The Cutting Season is that the language trumped the plot.