New Adventure!

I feel like a complete narcissist right now.  I hate to say "by popular demand" or "so many of you have asked...", but I've had a few requests for regular updates on the latest fun in our lives.  And it's been suggested that I journal through this journey for my own healing process.  So...here goes the blog.  Rather than start a new blog for just my new path, I figured I'll just comandeer our family blog, which I think we started when Halle was born, to update people on her progress.  And never maintain or update now....

Maybe a blog is a curse! 

In any case...I will try to post regular updates on our current situation. If you're interested or even just desperately bored, read on.  Read often. If you're looking for politcal correctness, constant upbeat Pollyanna attitude, or sugar coating reality, stop now and don't read further.  Ever.  I am not politically correct.  I say what I feel and never mean to offend, so in the words of President Thomas S. Monson, "Dont take offense where none is intended".  (I don't think that's one of his famous gems of wisdom, but I heard it in a talk once and loved it---and have never forgotten it!)  I may use words that aren't eloquent.  I'll probably overshare ... TMI...consider yourself warned.   But I'm just going to get it all out here, probably more therapeutic for me than informational for you.   Just think of it as reading Marcia Brady's diary, only unlike Cindy, you're not going to get busted for it.

What I've noticed is some days I really need/want to talk about it all, and somedays I just want it to go away and never speak the dreaded words...

SPINAL CORD INJURY.  Spinal infarction.  Ischemic lesion in spinal cord.   Partial paralysis.  Medical Rehab (as opposed to substance! Just medical people, just medical here.)  Physical Therapy.  Occupational Therapy.  Recreational Therapy (ok that one isn't so bad, but...)

Brown-Sequard Syndrome. (syndrome?!)

And then there are the buzz words I'm learning ...
"Transfers"  "Mobility"  "Tone"  "Clonus"  "Hyper reflexes" "Nerve stimuli" "Spinal Precautions"  "Foot Drop"
"Handicapped access"  "Disability" "Neuro....anything"

And of course...equipment....
WHEELCHAIR (gross).  Walker.  Harness.  Boot.  Bioness 300.  Binder. 

Lots of words.  That didn't pertain to me til May 10.  But they do now.  And will forever.  Maybe not as much as time goes on, but they will be part of my new normal forever.

I'll back up. 

Since March of 2010, I've had recurrent bouts of pancreatitis.  The first time I went in, (March 22, 2010) I had pancreatitis but they also found a weird mass in my right lung.  During the susequent months, I had several more bouts of pancreatitis, but the Dr's were more concerned about the lung mass.  Especially once they found a lesion on my adrenal gland as well.  After several inconclusive biopsies, they removed the lung mass at the U of U in November of 2010.  It felt like a long recovery, and I was on oxygen for a few months, but it went well, and most importantly---the mass was benign! Woot!  They also biopsied my adrenal gland and it came back benign.  Another WOOT!   The pancreatitis problem was consistent though and I had several admissions to the hospital to treat that.  So...once I was strong enough (and admitted for pancreatitis twice in one month), it was decided to go in and figure out what the heck the problem was.

May 10, 2011 I had surgery to fix it.  Most of us have 1 duct between our liver/pancreas.  I have THREE.  Hello! It's triplets!  So Dr. repaired that.  (I gotta get to the point here.  This is too long)   Anyway, in the OR, right before they put me out for surgery, they put in an epidural to control post op pain. (I had one after my lung too.  It provides pretty dense, complete pain relief without the side effects of narcotics.  The theory is you just are numb but not quite as loopy/nauseous etc because you're not taking all the weird narcs)  The Dr. had a difficult time getting the epidural in, but he did.   My surgery was supposed to take 3 hours...and 7 hours later, the triplets were repaired.  Dr. said a liver transplant would have been easier than what he did. 

My post op pain from the abdominal aspect was little to nothing.  But from the moment I woke up, my head and back hurt more than anything I've ever experienced.  Ever.  I was unable to get relief (well, mostly because the staff ignored me, but I'm not even going into that here....)  The 2nd night after surgery, my right leg started spasm-ing (I may have made that word up....don't judge), my foot started dragging, and I never felt my left leg sensation wake up ... ever.   I actually though the toilet seat in the hospital had a seat heater that was broken on one side because it felt cold under the left side and warm/nothing under the right. (remember the TMI warning?)

I was discharged after a week and went home where the spasms continued every night and my foot/leg continued to drag. Finally one night, (May 26?) The spasms were setting in in my leg (they usually started between 9-10pm) and that night, they were going up my back as well. Mat suggested we go to the U.  I said, "No.....everytime I go to the U, they keep me!" :)  I suggested we just go down the street to Lakeview Hospital, thinking they'd just give me a muscle relaxant, or some of those Doan's Back Pills that old people take, and maybe an Ambien or something, and then they'd send me home to sleep.    So...off to Lakeview we went.  They were awesome.  Sat in waiting room of ER for about 5 mins. and I was back in a room.  Bascially, the Dr. asked me to lift my toes (flex my foot) and when it didn't, he had me in the MRI machine.   They were so kind.  Had an IV going with pain meds and got the spasms to stop (well, I assume the stopped, but I was zzzzzz from whatever they gave me, so life was beautiful!)  Literally, it was the FIRST time in 2+ weeks I was out of pain.  Or at least could manage it.  At home, and especially in the hospital after surgery....wow.  I've NEVER experienced anything close to the pain I had.  I'd finally just lay on the hot pad as hot as I could stand it because the burning was the only thing that offset the excruciating pain in my back/head.  Ugh.  Can't even think about it.  Might barf.

Anyway, next thing I remember, the Lakeveiw Dr. told me they were sending me to the U of U Neuro ICU because there is a problem in my spinal cord.  Wanna know the problem?

I have "an ischemic lesion from T5-T12 caused by a spinal infarction, likely caused by an epidural which was placed intraoperatively and 'fell out' on day 1."  I have Brown-Sequard Syndrome....Google it.  Or maybe that's another post.   But this is  a spinal cord injury usually seen in gunshot wounds or stabbing...or in my case...an epidural!

I spent several days in Neuro ICU up here at the U, and now I'm in the Medical Rehab Unit (room 2617 just fyi...) learning my 'new normal.'  I keep saying that.  But it sounds less daunting than 'new lifestyle' or something like 'complete life change'.  Whatever...

I have different therapies 5xs each day; 2 sessions of Occupational Therapy, 2 sessions of Physical Therapy, and a Recreational Therapy session every day.  I look around here and it's surreal.  I have a wheelchair next to my bed.  My leg won't move.  I can't feel the other.  I go downstairs with my "neighbors" and I don't belong here! Theses people have disabilities!  Oh wait.  I guess I do, too.  Now.   But I feel like a rock star.  Most of the people here have Christopher Reeve type injuries.  Or severe stroke.  There are 3 classifications: TBI (Traumatic Brain Injury), Stroke, and my classification....Spinal Cord Injury.  But I can move better than all of them.  I'm not complaining.

Sometimes it's actually funny.  Like, yesterday, I did "Kitchen Mobility".  In the gym, where all therapies take place, there's a kitchen.  Like a model kitchen from Home Depot.  So you have to go in there and do something....like pull out the plates and not drop them.  Load the dishwasher. HOLD IT! I don't have to do that ever again!  I have SPINAL PRECAUTIONS....the rule is "No BLT"  Which is Bending, Lifting, Twisting.  So anything that requires those actions is off my list.   I think loading a dishwasher definitely qualifies.  Sweet!  Anyway, during my Kitchen Mobility, I made chocolate chip cookies.  The kitchen is fully stocked.  They pulled out some mix and I said..."Uh no.  No mixes."  So I just did my usual recipe and it makes about 1000 cookies.  I told them I only bake in bulk.  They (the employees/therapists) were all so cute about it.  They came in and ate all the cookies and acted like I'd done some major accomplishment.  It was fun.  Today I have one more Kitchen Mobility.  Mat brought bananas (I keep ripe ones in the freezer of course) and I'm doing banana bread.  Maybe I can bake my way out of here.

It's weird to be in the kitchen and not be able to bend reach lift or do anything "normal"  But we will figure it out.  I guess just wrapping my brain around it all is a process, not an event. 

That's it for now.  More later, I'm sure...

Thank you to ALL for the love and support.  The visits keep me sane.  The treats keep me happy.  And I feel the prayers every day.  I am blessed.