A Long & Narrow Road....

Hello to everyone and please accept my apologies for not updating my blog as I intended.  The 4-5 weeks have been filled with ups and downs...the ups are that my daughter is finally potty trained! Yay!  She starts preschool in September and just finished a week at Vacation Bible School and she absolutely loved it!  Another up is that Matt starts what we call "van camp" in a week or two - he goes all day to an outdoor lake/camp and does all the things we wish we could do when we were little (horseback riding, swimming, canoeing, ropes courses, nature hunts, arts & crafts and of course every sport you can think of --- especially hockey!)  Another up (and we realize we're crazy, but crazy in love at this point) is that on Father's Day, we picked up our 8 week old yellow lab we named Molson (as in Molson Golden Canadian...the beer...seems fitting and my Canadian husband of course loves it).

But with some up's also come some downs...one is that we miss my parents and their help and support. It was a blessing to have them here with us for so many months and we don't know how we would've made it thru without them.  But the biggest down, by far though is something i just found out yesterday with an appointment with my surgeon.  There is a possibility that i will need yet again another surgery.  This would be my 5th back surgery.  Not a track record i'm proud of or boasting about.  As you know, on March 27 i broke my T12 transverse process clear thru left to right thru solid bone.  Solid bone!  The surgeon has no idea how that even happened because that bone is apparently a very big, thick one.  In any event, i somehow broke it...which landed me back in the hospital for 8 days and then inpatient rehab for a month.  I've been wearing this clamshell brace religiously and despite that, the fracture has still not healed.  He said that if it does not heal within the next 2 months, that i will need a complete revision of what he did during my second surgery.  He would have to remove all of the rods and screws he worked so hard to "install" and then extend the fusion up all the way, top to bottom, literally.  He nor I want to have to go thru that again.  It was that second surgery that really put me over the edge last time so the thought of having to do it all again is just too much sometimes.

Like i said when i created this blog, i'm using it as an outlet - sometimes a 'venting to get it out' outlet and sometimes an information outlet for others who just may have go through this at some point.  I try to be upbeat and optimistic but i'm not going to lie - it's a "long and narrow road" and sometimes it just baffles me how much my body if failing me.  I'm doing everything i can but it's still not "listening" (lol)....this fracture HAS TO HEAL - - and if it doesn't, then i will have another surgery. 

SERENITY PRAYER



God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
enjoying one moment at a time;
accepting hardships as the pathway to peace;
taking, as He did, this sinful world
as it is, not as I would have it;
trusting that He will make all things right
if I surrender to His Will;
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next.
Amen.

Thank you in advance for the continued prayers!

Home Sweet Home.....

Well WHAT a crazy 5 weeks it has been in the Millar household - or shall I say to be more accurate what a crazy 3-1/2 months it has been!  BUT, despite the highs and lows (of which there have been many), we're all still here, still surviving what life throws at us.  I can't BELIEVE i was gone for 5 weeks as i just came home yesterday after spending a month at Magee Rehab Hospital and before that a week at Cooper in Camden.  FIVE WEEKS.  I came home and felt like a stranger in my own home.  It was surreal...and overwhelming.  It was a bit unfamiliar and yet, it was home.  MY home...in true "Michele" fashion, I had to have all my ducks in a row - organize this, straighten up that and so on...and then in the silence of it all, i just cried...i'm not sure why - but i just did - like i had to let it out - i was just so happy to be home but at the same time, so sad for all the time that i had missed....i cried for fear of the future: what if 'it' (the broken back that no one knows how it happened) happens again...how do I move on from here without living in a bubble and feeling like i can't do anything because "it" might happen again.  So i'm trying (now day 2 home) to live a normal life and do normal things yet very cautiously and carefully, which is really the only way I can do this!

So the kids are thrilled to have me home -- Kate went down for nap today and said "you not go no where mommy, you stay here." LOL.  And the first thing she said when my Mom went to get her was "Mommy here now - she not go not where, right Nana?"  Despite the terribly improper 3 yr old English, it just melted my heart.  And Matthew kept asking if he could get me a snack or some fruit - actually he must've asked me 10 times but it was so sweet.  It's definitely awesome to be home I'd like to keep it that way for a long time!!

How do I feel: Exhausted. Completely 100% totally exhausted.  That'll improve i know, but wow, i'm wiped out. My appetite is coming back, my pain is being well controlled, and I'm able to do quite a bit - walk with and without a walker depending on how far i'm going, do the stairs with someone in front and/or behind me, get dressed using all my OT "gadgets," and if hungry, make a snack.  Sounds so trivial, but coming from completely helpless to where I am today, I am so incredibly grateful.  I feel blessed to have such a loving family and friends who've been 'riding this out' with me.  I don't know what i'd do without them.

So, at Magee, i not only had a wonderful OT & PT but also had the opportunity to do art therapy and horticultural therapy...what a great therapeutic outlet when you're in the hospital.  It makes you forget what hurts and why your there - even if only for an hour.  I thought i'd share some things I 'created' with you:

 My daughter Kate smelling the flowers on the rooftop deck at Magee - we could all learn a lesson about stopping to smell the roses.  Slow down, life goes by too fast - stop and smell the flowers and enjoy the colors of the world through the eyes of a child.

 And YES, i did write these - so many people have said to me "Did you write this?" and my answer "Yes!" It was a very therapeutic outlet for me to incorporate two things I love most: writing and calligraphy.  The first one "BELIEVE" is a motto or term for lack of a better word that Magee uses to describe themselves. And now having been a patient there, i see what they mean...."BELIEVE....in a way back."  That is what inspired me to write the one above.

The one below was something I thought would sum up my stay at Magee using the 5 short letters in it's name: MAGEE.  I came in knowing that miracles happen every day and i believed I was worthy of one. So i "BELIEVED" (there's that word again) in "Miracles happening."  Every day, we as patients are working to achieve our goals - the harder you work, the further you'll go - plain and simple.  "Greatness of staff" speaks for itself and no one can attest to that better than a patient.  They are truly wonderful, giving, supportive people who want the best for you - and that goes from therapists to doctors to CNA's, rehab aides and housekeeping...everyone was willing to help in any way possible.  You don't find that everywhere you go and Magee sets the standard very high for others to meet in my opinion.  The efforts of the patients again goes with working to achieve your goals.   Once you leave here, the possibilities are endless.  You are not defined by or confined by your 'title' - patient, therapist, CEO, Vice President, etc. What I mean by "Endless possibilities" is that we are all capable of great things - some small, small large - but whatever our contribution to this world, the possibilities of those contributions, achievements or goals are endless!  You never know where the next "miracle" or "achievement" may happen and to have so many staff members supporting and encouraging you along your journey, it makes for truly "Endless possibilities."

Discharge Date (Thurs., 4/3/12) from MAGEE....

Well, today I was officially given a discharge date of Thursday, May 3rd.  At that point, I will have spent exactly 4 weeks here.  My pain has come down somewhat but I am certainly not pain-free and I still have a long way to go in order to live the life I want and need to live which includes less pain, more smiling and alot more time playing with my children (3 and 5 yrs old)!  In my time here at Magee, I've made the most beautiful floral creations in horticultural therapy (now I just have to work on keeping them alive!!)  I've used water colors, wax, chalk, paints, sketch pencils etc in Art Therapy to make things that remind me of home: a heart with the names of my family members in it as well as a Millar Family Crest that i'm still working on - now that was a biting off a bit more than I could chew but what the heck.  We'll see how it turns out.  I've worked my butt off in therapies and I've had times where I just had to sit in the silence of my room and cry because that's what my mind and body needed to do.  I have a private room, for which I am soooooo incredibly grateful - and I have a view of the city of Philadelphia that would just make anyone say "Wow!" (I'll post some pictures when I get home).

I am learning alot about myself being here, not only as an inpatient - but as an Occupational Therapist who not only WORKS in a rehabilitation myself, but it now a patient in on.  I can tell you, it is VERY different being "on the other side."  I do believe that I'm being a very good patient (I try not to whine and complain too much - haha!) - I think it helps me, in a way, being a patient as well as a therapist, because I can use the same language the therapist uses and when I look at them and say "I can only do one more," they know I mean it.  I'm pushing myself as hard as I would push my patients, so in a way, I'm getting a taste of my own medicine...which i don't mind as long as it gets me out of here leaving better than when i came in!!  I'm learning about perspective in a way no one could ever teach me or explain to me, too.  My perspective has changed from that of a therapist, encouraging and often times requiring more of my patients, to now that of a patient, who is (or maybe isn't) always able to give it all I've got at times due to pain, fatigue or plain old motivation.  I KNOW HOW IT FEELS NOW.  I also know i'm not here forever - and the time I'm here I need to work as hard as possible - "encouraging and requiring" more of myself (the patient) because I know my time here is limited.  The rewards in the end should (no, they WILL) outweigh the trials, tears and the "I can't do it's".  All over Magee, you see "BELIEVE." on a wall in their gym hangs a poster.  It reads (in part) "BELIEVE.....in the art of inspiration. In the craft of creating hope and shared vision for recovery and return...our passion for what's possible makes each and every day a new opportunity to inspire. And when we succeed we receive our inspiration.  This is the art of MAGEE Rehabilitation Hospital."  And this couldn't be more true.  As a therapist, I can truly see and honestly appreciate how what we do as therapists (speaking as an OT now) is truly a "craft of creating new possibilities" because the dawn of each new day creates opportunities for inspiration and hope for both me the "patient" (as is the case right now) and me the "therapist."  It is truly a work of art to get your patients to believe in not only themselves but their own abilitlies and more importantly, their endless possibilities.  Every day, we (speaking as an OT) paint on the canvas of our patients - and every day they paint on it as well...but together as patient and therapist, wecreate our own craft of "hope and shared vision for recovery and return."  BELIEVE...not only in yourself and your own possibilities but believe that you are capable of great and life changing opportunities despite the challenges that have been placed before you...if ever a word to say it all, B-E-L-I-E-V-E.

Soooooo much for smooth sailing.....

Well my fiends and family....ALOT and I do mean A-L-O-T has happened since the last post I made way back in early March. I don't even know how it all happened but I'll do my best to describe what I know. I was doing well, fairly well physically and surgically aside from several weeks of stomach issues (see my "Tummy Troubles" entry before this post). So here's whats been going on.

I was about 2 weeks away from discharge from my home PT and was making slow,steady progress. On the weekend of 3/24, I started experiencing pain in my lower back but it wasn't that "good pain" or "healing pain" that I have spoken of previously. Something was off, it hurt and it was getting worse with each passing day. By Sunday, I was barely able to stand up and it felt like I was being sabbed with every movement I made. By Monday, it was decided that I was just going to get the X-ray and show up at my surgeons office with my Dad, which is exactly what we did. The surgeon saw that I was in excruciating pain, and said "your X-rays look great. I don't see anything out of place. It's probably just a bad muscle spasm." Little consolation as I lay there sobbing in pain. My Dad suggested a cortisone injection and the doctor agreed as if saying "well, if you insist" - he said to call him Friday to let him know how I was doing.

Well, I made it til Wednesday before calling him back and telling him it was so bad I literally could not walk and that the pain was absolutely unbearable. Actually now that i think about it, Chad called because is was crying from the pain i couldn't talk. He said come to the ER, I'll admit you, we'll get your pain under control and get a CT scan just to make sure it wasn't more than a muscle spasm. Well, it was definitely more than a muscle spasm. He walked into my room at 6:50am the following morning after being admitted and said: "we'll, you have a broken back at the T12 level (1 level above where my fusion starts). He went on to say I have two options: "A clam shell back brace for 3 months or another extensive surgery to extend the fusion." and that was about it - then he was off to Bulgaria
to do mission work/surgery.  Great...i brake my back and my surgeon goes out of the country for a
week!  C'est la vie.  So, I spent a week at Cooper on IV pain and muscle relaxant meds and on April 4th, was transferred to Magee Rehab Hospital.

Here at Magee, my PT (Alex) is one of the brightest most experienced therapists I've ever come across - and aside from that he's a nice guy and makes me laugh even when what were doing hurts. My OT (Liz) always greets me with a smile on her face and a positive attitude.  She takes OT to another level by incorporating all aspects of me, my daily life, my occupation (an OT!) and my rehab, not just my back. The care I am getting here is top notch incredible. The Nurses, the CNA's, the maintenance staff, everyone - they all greet you with a smile.  I have a minimum of 3 hours of therapy a day: PT, OT, Recreation therapy, art therapy and even horticultural group twice a week. I was told I'd be here about 4 weeks.  I've completed two weeks thus far and have 2 more to go. It's hard work - its extremely painful to have a broken back (and this brace is not helping) on top of what was 8-9 weeks post-op healing from from the other 2 surgeries. I am getting the physical, mental,
emotional and psychological counseling that I need and I am so incredibly grateful. I am currently in
a wheelchair but that is NOT permenent (I'm not steady enough to walk so if I want to get around in my room I scoot around in my w/c - i can walk about 20-30' (which when i first got, here I couldn't even stand and walk 3-4') with assistance and a rolling walker and my standing tolerance has gotten alot better about 3-5' which is a big improvement. I NEED to be here - IT has taken me 2 weeks to really believe that - but I really do need to be here so that I come home, I'll be home for good. Thank goodness for FaceTime and Skype. I miss my babies and husband and I am so blessed for my parents and all they've given up and put on hold back home in Savannah to be here with us taking care of the kids and everything's you can think, imagine or dream of.

So with that I will update when possible. Email or call whatever you want. I will return all calls and emails although i have to admit I'm pooped by 9am and am often asleep by then! Haha! Thanks for all your prayers And support. I don't what my family and I would do without everyone's love And support.
Again, thank you!!

Tummy troubles but otherwise on the mend...

So here I am 5-1/2 weeks post-op from surgery #2.  All in all, i'm feeling ok - some days are definitely better than others but I can see improvements every day.  This morning, my Mom and I walked to the corner (about 5 houses down) and back...albeit slowly, but we did it.  My biggest problem since coming home has been the constant nausea and stomach upset - 24/7 - finally, at the urging of my visiting nurse and home PT, I went to see my surgeon yesterday because the tummy troubles, low blood pressure and overwhelming fatigue were just really getting the best of me.  He said all looked good from a surgical standpoint but that what I have is most likely "stress gastritis" - an inflammation of the stomach lining.  It's been really hard to function with feeling so nauseous all the time and as a result, I've lost about 7-lbs over the past 10-12 days and there are days when i can't even lift my head off the pillow or sit on the edge of the bed due to the nausea.  I've started on the usual tummy remedies: antacids, Pepto, Tums, gingerale, soda crackers and just bland soft foods to keep everything "quiet" in there. Today is the first day in a long time where I actually felt well enough to walk outside, even if it was only 5 houses down and back!  The doctor said it's all normal (how i'm feeling) and then he reminded me and my Mom how much work he had to do on me and what an ordeal my body went thru and now that the surgeries are over, my body is reacting to the stress of it all.  5 weeks later??  Who knew?!?!  I was expecting to be doing alot more than I'm currently and with alot more energy - I was hoping I'd be up and around a lot more but I'm not and so the surgeon reminded me that this is a long recovery (6-12mo) and that I need to be patient with myself and let my body heal and rest.  Easier said than done. But i'm working on it.

The kids are doing fairly well through all of this.  No sugar-coating anything, it's been hard on all of us for a variety of reasons and in a variety of ways. We've kept their schedules the same as there is some comfort in knowing there's still a routine even in the midst of stress. Nana and PopPop basically closed up shop in Savannah and moved in with us to help out: everything from errands, food shopping, taxi for me and the kids, meal maker, etc. My husband has taken time off intermittently thoughout all of this as well - days to visit me in the hospital and at rehab, days to take me to doctor appointments and other times, days to just stay home and help out with the kids. What a blessing they've been. 

All in all things are going well - - my family and I are just blessed and grateful for the ovewhelming kindness and generosity of so many family, friends and even some strangers through all of this.  If for some reason i have neglected to thank you all yet, please let me do so now...THANK YOU - ALL OF YOU - for your constant prayers, words of encouragement, visits, cards, emails, phone calls, meals - thank you for all of it from the bottom of my heart. 

The Nuts & Bolts of it all....

I was reminded very clearly this afternoon just how much surgery I had done on my back last month when i stooped down at the toilet while in the bathroom with my 2-1/2 yr old daughter, who is not exactly a fan of the whole potty training thing, and then attempted to get back up!  Although not on my back (thank GOD!) it was about as difficult to get back up as it would be for a turtle to right itself while on its' back.  Kate and I both have some work to do! 

I opened the mail and there they were - my long awaited, much anticipated xrays and CT scans from when i was in the hospital.  No one but me would ever be this excited to see what they look like - it's hard to describe.  I just couldn't wait to see what was (and continues to be) causing me so much discomfort and pain - it's not the same kind of pain like before surgery though; now it's more like a healing, surgical pain...and hopefully it will subside substantially in the coming weeks and months like it continues to do every day (albeit very slowly according to me!).  But then when I opened the disc and saw what was inside of me, my pain felt somewhat justified - like it was ok to allow myself to rest when i'm in pain and not feel bad or guilty about it - and not push myself.  I need to be patient.

So, here are several pictures (xray & CT) of my 'new and improved' spine post-op the 1/31/12 surgery.  Pretty gosh darn amazing to see screws in there the lenght of my index finger!

BEFORE PHOTOS:

"Flatback Deformity" (X-ray) with Harrington rods/hooks and no lumbar sway/curve of the lower back.

The dreaded Harrington hook and rod - - This is an acutal 7" piece of rod that was taken from my body using bolt cutters; the actual original rods were 13" long.  As crazy as it sounded, I wanted a piece of that rod for no other reason other than I wanted to see what was causing me so much pain.  The hook pictured was the hook sticking out of my upper back for the past 5 years...AMEN they're all finally OUT of my body now.  Good riddance!

AFTER PHOTOS:

ABOVE: (CT scan - lateral view)

All of my previous Harrington hardware was removed and replaced with pedicle screws and smaller titanium rods with fusion from L1-S1 with pelvic fixation.  And notice the beautiful lumbar sway/curve in my lower back now when compared to the "flatback" above!

ABOVE: (CT scan - frontal view)  

Pedicle screws and rods extending from L1-S1 and laterally into each side of the pelvis.

One Month Ago Today...

One month ago today, I was undergoing the first of my 2 surgeries.  Alot has happened in a month.  Some good, some challenging, some unexpected...none bad.  I thank God every day that I made it through such a challenging and complex surgery and I also thank God for the unbelievable love and support that I have received from family, friends, co-workers, friends of friends and some strangers.  Truly amazed and humbled by all of the support - so to all of you who are reading this, for all of you who have said a prayer or an email or just a simple thought of well-wishes my way, I thank you...from the bottom of my heart.

This past month has been filled with alot of challenges...physical, emotional and mental.  I have come a long way in one month...I still have a long way to go until I'm where I want and need to be, but all in all, I have come a long way.  I have PT several times a week, working me hard and not letting me give in (or give up).  I want to be able to do more without getting so tired but I also have to remember that I can't overdo things or else I take two steps back.  I have to be patient with myself (something easier said than done for me!)  This week, my friends from MOPS and HOPE started delivering meals to our family several times a week, which has been a tremendous blessing to my family, especially my dear (exhausted!) Mom who has been wearing many hats all at once: taxi driver, cook, house keeper, laundry-doer (is that a title?!?!), caregiver to me and my 2 two small children, boo-boo kisser for the kids when Mommy isn't available, entertainer and about a million other things! I'm battling the emotional guilt part of not "being there" for my kids but when i am there, i'm really "there" for and with them...I try to spend quality time with each one as we're curled up on my hospital bed in the living room - we read a book, play a game or just cuddle.  I cherish those times and I know the kids understand that Mommy just isn't able to DO much yet - so even though they're young, i really think they know that Mommy is working hard on getting better and stronger so that Mommy can be a fun and active Mommy again!  Something I am very much looking forward to in the future. Mentally, it's exhausting and at times very frustrating to realize i can't do things - there are things you just take for granted doing until you can't do them anymore!  I know it's temporary - like Dr. Phil says, "This ain't my first rodeo." So i know as time passes i'll get stronger and things will get easier - and they are - but just not as fast as i want them to.  Again, patience...it's NOT my strongest quality.

Spiritually, I've never felt stronger or closer to God than I do now.  I have had a revalation of sorts.  It took walking thru hell to realize that when I couldn't walk, God was carrying me...and when I couldn't stand the pain not one minute longer, He allowed me to drift off into sleep as the pain medication kicked in.  And just when I felt all alone in this struggle and thought I would never get out of this "state" (of depending on others, of feeling completely helpless and reliant on others especially in the hospital), He was there to whisper in my ear that I am NOT alone, that He is with me in this journey - and i never really believed it until now.  I believe it now with my whole being.  With every ounce of who I am, i know that having gone through this experience, I am nothing without Him and it was He who carried and now currently walks with me through this journey as I continue down this long road of recovery.

I saw my surgeon this morning, the talented and very skillful Dr. Clements, who reminded me that i had "been through the wringer" and that I am right on target with where I should be at this point in time.  Very reassuring.  I will return in a month and have xrays prior to my visit. I have a piece of the Harrington rod as a token of just what was inside of me all these years causing me so much pain. Amazing to actually hold in my hand - and amazing that it (along with the rest of the rods and hooks) are OUT of my body now.  Humpty Dumpty has officially been put back together again with pedicle screws and smaller rods - and i'll post pics of my xrays once i have them in a couple weeks (I can't wait to see them!)  In the meantime, i thought i'd show you my BEFORE & AFTER photos - the before's were taken while i tried to stand with my back up against the wall - unable to do so, i had to bend my knees.  With knees straight, i was atleast 6" away from the wall.  The after, well - it speaks for itself :)  And the T-shirt was given to me by a US Marine friend of my Dad's - it says "Pain Is Weakness Leaving The Body."  How true!

 AFTER - knees straight, back against the wall~!!!