Boo Hoo...

Knock Knock?
                Who's there?
Boo.
                 Boo who?
Don't have to cry about it, it's just a joke...

I did it.  I cried about it.  All night.  Yep.  The Ugly Cry - complete with red, blotchy face, contortions, snorts, snots, and all other things unpleasant that come with T(he) U(gly) C(ry).

Here's why I cried - in random  - not alphabetical order.  And not even in order of priority.  Just random.  Because that seems to be my life plan.

• I can't lift my Halle on to my lap by myself*
• I can't throw my kids in the car and go to the pool, movie, mall, lunch....you get the idea.  Because I can't drive. Or lift.  Or bend. Or twist.* 
• I can't walk up and down my stairs without help*
• I can't walk.  Without help!*
• I can't feel my leg when I rub lotion on it.*
• I can't move my toes.  At all*
• I can't bake or do anything in my kitchen without someone assisting.* I do not like assistants, generally speaking...
• I can't do Simply Sweet anymore.
• I can't play the organ.*  Yep. I'm a nerd.  I love playing the organ.  For some, it's a secret I've hidden well.  For others, I take your mocking like a man.  In any case, I can't play the organ.  Unless I rig myself up something like this....

*YET!

YETYETYETYETYETYETYETYETYETYETYETYETYET!

I can't do those things *yet.  But I'm going to. And it's going to be sooner rather than later. Here's why:

I got an email today from my cousin, Stacey.  I haven't kept in touch with Stacey over the years. But in the past week or so, she has secured her place on my Life Hero List.  Stacey has MS.  And she doesn't fuss about it.  She just has it.  Her mom, my Aunt Marie, came to visit me this week, and brought 98 year old Grandma Verna to see me.  Now Grandma is in better shape than anyone up here, inlcuding me at this point.  They brought me a card and a book on CD (The Help - I am stoked!) They came right as I started PT so they came to the gym with me and stayed through my whole PT session.  And Grandma was so proud of me.  She thought I "did just great!"  As only a Grandma can say.  She clapped when I tried to step.  She said, "OooooH!" in a high pitch voice when I could move something. And probably even when I didn't.

Later that day, I guess Aunt Marie told Stacey, who sent an email full of valuable suggestions and advice, both on the medical horizon and well as mental/emotional.  And one thing she said that has stuck in my brain all day is,

"Don't focus on what you can't do, focus on what you can do." 

Ah - Ha!   I need to forget about what I used to do, and how to do it, and find the way I'm going to do it now.  And NOW isn't forever, I don't think.  There's too much ongoing research, and too many cutting edge treatments, and so many options for recovery.  Maybe not full recovery.  Probably not. But recovery is in the eyes of the beholder I think!

It is what it is. And it's a spinal cord injury.  It isN'T pretty.

But it doesn't mean that my limitations today are my limitations forever.  Because I hate being bossed around.  I really don't like that one bit.  Never have.  So since I'm the boss of myself, I guess I will be the one deciding what I can and can't do.  And every day I'm going to decide.  Today I'm deciding I'm a little bit mad.

Today Clara - one of Sara's dearest friends who we love as our own daughter - got married to cute Andy.  And I couldn't go to the ceremony. And I'm mad. (told you, no politically correct.  No Pollyanna.)  They wouldn't let me leave because I have too many therapies in the morning.  But thanks to Stacey...guess what I realized?

The "cans".

I can/did get to go...to the reception. Now it took two days to get things in place, but it was soooo worth it.

I'm learning that stuff around here is much more involved than I realized on many levels.  To bust me out for any length of time (maximum time? 3 hrs!) the Dr. has to write an order ok-ing it.  Then PT has to make goals for me to accomplish in order to count it as a "therapeutic time out". They have to know all details: where I'm going, who is in charge of me (my dad and my  niece, Amy, who is a nurse), the kind of car I'll be in (had to ride in Dad's dumpy Lexus haha) ,  where I'm going  (to the Neff residence to an outdoor wedding reecption), what I'll actually be "doing" (eating wonderful food at a wedding reception), and when I'll be back. (that's a loaded question.  They gave me 2 hrs.  No exceptions.)   Then they have to approve it all through my insurance (some insurance companies think if you're ok to leave for 2 hrs, you're ok to go home.  I tend to agree... :)  But the biggie is getting back on time; apparently it messes up everything here if you're not back when you're supposed to be.  My Time Out was from 6-8.  Mark....Set...Go!

Next, they adjust all your medications (um...I'm taking a lot of those...more on that later!)  so that you're properly medicated for your outing and don't need them while you're gone.  Then I have to "practice" anything I have to do during my time away so I don't get hurt or exacerbate the injury.  The goals my PT set for me for my time out (well, I call it my furlough....) were:

• Self Propel  That means push myself in the wheelchair not have a push-er like I'm the Queen of Egypt.  I'd rather be the Queen of Egypt.  My arms are flabby and jiggle when roll myself in this chariot. And they get tired.  I'm no athelte, ok?!
• Transfer Unassisted  That means get myself from my chair to the car, etc.
• NO BLT! (no Bending Lifting Twisting)  I really struggle with this one.  It is mostly habit/reflexive...you drop something, you reach down to pick it up.  You see something or someone as you roll on by, you twist and look behind you or around you to see what it is.  And lifting...are you kidding me? I have a three year old!

My best friend, Karen, and sweet daughter, Carly, came 2 hrs before launch and got me ready.  That's a true friend.  Carly and Karen did my hair, nails, dressed me, and primped and fussed over me like I was going to the ball.  It was so fun for me.  Everything is fun with Karen -- we just celebrated our 20 yr friendship anniversary.  But seriously, to come do my hair, nails, dress me...a loving act of service and I am so thankful.  I felt like a real person.  Lotion! Make Up! Hairspray!  Ahhh. It's the little things.

Next thing I can/got to do? I got go on a date with my Dad tonight for 2 hours! I got to be wtih my awesome husband and crazy kids for awhile in a non-hopsital setting.  Heaven, people.  It was heaven.

Now probably 90 mins of  my 2 hrs out was loading my big self and equipment up (such a pretty visual), and thank you to my stellar Dad for being willing (he actually offered) to be my personal slave, chauffeur, nurse, PT, etc.  He did that so Mat could just focus on getting the kids to the wedding, and then once there, they just played and enjoyed.  And when pumpkin time arrived, Dad returned me to the hospital -on time - so Mat and the kids could keep having a fun night.  I guess that's what Dads do.  Mine does anyway.  I'm so lucky. And Mom was so sweet to let me have him for the night.  My mom has a hard time getting around with some of her health challenges, so it would have be hard to have Dad take us both.  Mom decided to stay home so Dad could just do me.  But she sent a little token like a fairy godmother...Dad pulled a diamond necklace out of his pocket when he arrived and handed it over.  Just like on Pretty Woman.  Sort of.  But I got to wear my Mom's diamond pave necklace that is shaped like a Hershey's Kiss. Only Renee.   I laughed my head off - and felt like a million bucks wearing it for the night.  Honestly, parents are the best.  Mine are anyway.  Funny how stuff like this opens your eyes to this...parenting never ends.  Unfortunately for them, it never seems to for my 76 yr old folks.  They do it well. 



My handsome date, Marvelous.  The blue boot? That just helps with foot drop.  My dead leg has a droopy foot. This giant boot holds it in place kind of like a cast to keep the foot from just hanging there and turning in.



Mat got all the kids ready and we met at the wedding at just about the exact same time.  Clara looked gorgeous, Andy was a handsome groom, and it was so nice to be outside and feel like a regular family.  I'm never going to take for granted my 'regular family'.  It's the best.  I got to see lots of friends that we've missed since our recent move to Bountiful.  It was wonderful. 

It was kind of hard, too.

I had to sit there in the chair and I didn't used to think I was too prideful, but guess what?  I think I have some pride issues.  I felt awkward sitting there and having people bend over or crouch down to talk to me.  It was hard to talk about what happened.  I didn't want to.  I just wanted to stand up and be like everyone else.  It was humbling to have my dad and 3 other guys have to lift me from one level of the backyard to another.  I was embarassed.  That is prideful. 

I wondered how Mat felt as he came with all the kids and met me there...in my chair.  Not really what we had planned for our life.  So it's not going to be permanent.  Because it wasn't in our plan.  But he always makes me feel like I'm the hottest thing walking - er rolling - and acts like he doesn't even notice.  He's a good man.

Halle: I want to say something.
Katie: Then say something.
Halle: Stinky pickles!

My kids acted so happy to see me there and just hugged and kissed me.  Chloe is very nurturing and wanted to help get my food, and make sure I was all set up at the table.  Halle is getting to be a pro at climbing up on me in the chair.  I love it.

I got tired pretty quickly so we bailed out, but we did stop by Grandma Verna's on the way back to the hospital. 

I love my Grandma.  So, so, so much.

At age 98, she is still my biggest cheerleader no matter what I do.  Dad went in her house and got her to come outside to "see who's in the car".  She threw her skinny arms up and said "Oh! Oh! OH!!!" in this high pitched squeak that she usually only does when Dad, Marie, or LuAnn walk in the room.  I feel honored to be part of the Club That Makes Grandma Squeak.  She hugged and kissed me through the car window, then grabbed my hand and just rubbed and rubbed my arm. She told me I look "just great!",  and said she was so proud of me.  That's Grandma.  She always makes us feel beautiful and that she couldn't be more proud of us-even if all I was doing was sitting in a car.  I adore her.

Dad told her I had to be back to the hospital before the clock struck 8, and it was 7:30.  Well, that was it.   Grandma said "Oh get her back there! Go! Go!" waving her arms around like I was running from the law.  It was awesome.  So Dad and I floored it back to the hospital and I'm pleased to announce we got here at 7:41.  NINETEEN MINUTES TO SPARE.  Take that!

Dad rolled me up to my room and stayed for about a half hour with me as I basked in the glow - and exhaustion - of being part of the world for awhile.  It was so fun.  Mat and the kids stayed a bit longer at the wedding then called to report in on what I missed when I left.  They had a great time and so did I.

Can I just say Mat is the best dad ever.  Ever.  Our kids are lucky.



It's early Sunday morning now, and I slept like a rock.  Best rest I've had in over a month.  Probably due to sheer exhaustion, but also I think they're leveling out my medications so I 'can' rest.  I take several meds now...(possible TMI warning)

• I take pain medication every 4 hrs.  This won't be forever.  My back is still quite painful, especially after therapy - or a wedding.  Sometimes being up in the chair hurts a little too after awhile.
• I take an anti spasmatic/muscle relaxant type medicine. (according to my pal Pam, the anti spaz drug is looonnng over due...)  But it helps the muscles in my dead leg not spasm.  Ahhhh. That is a good feeling.
• I take a medication to help the nerves.  Numbness and tingling (the painful kind) are common after spinal cord injury and I have a lot of neuropathy in my hands and feet, especially at night.  They've been titrating the dose this week, and I think we've hit the golden level, because last night I didn't wake up at 3am feeling like my hands and feet are on fire. 
• I take a couple things to keep the ole bowels going.
• I have my usual migraine pill when needed (sometimes the back spasms/pain trigger a migraine.)
• I get heparin injections to keep the blood from clotting.
• Blood pressure meds as needed. Sometimes my BP goes up a little, sometimes it bottoms out.  It's not happening often at all though so I don't need those too often.
• I take Zofran.  Nausea is an enemy.  Zofran is a friend.
• I am still on massive doses of Decadron - a steroid to help reduce the swelling in my spinal cord.
• Sometimes I get a little insulin.  Being on massive steroids can cause glucose level to be whacked.  I haven't needed it much, but occasionally I have a big dip or spike in blood glucose level.  If it's up, I get a little zap of insulin (that "zap" was a holla to Dr. Giddings)  And a few blessed times, it's been low and they "make" me eat.  I could get used to that...

Seems like there may be another one or two but I can't think what they are. Anyway, another long, rambling post, but remember, this is my "journaling to heal".  So here's the summary:

1. I cried yesterday. Pity Party? Yes.  But it's over.  For now.
2. I was mad yesterday.  Done with that too.  It's too exhausting.

So Cousin Stacey, I'm focusing on my "cans".

I can hang with my BFF and get primped for the wedding.  I can hang with my Dad for a couple hours. I can be with my husband and kids in a normal setting for a bit. I can move my whole upper body with no problem. I can see. I can hear. I can think. (no comments from outside sources here)

I can be grateful.  And I am. My great, full heart is absolutely grateful.  I am the luckiest.

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. 

this is chloe. so sorry our fam. blog has not had a post for like years! ever since the wedding things have been crazy. halle turned 3, chloe is turning 11 in feb. meg is turning 10 in march, tanner is learning banjo, katie is in the jr. R.O.T.C, sara and riley have a dog, bronx, mati is speaking spanish amazing, and mom and dad went to cali. for a trip! new years went well, we all went to sunvalley idaho. BLAST! we have a new amazing nanny, dez. things have been going well.