2 years ago today...

Two days ago today, I was sitting in my room, looking out my window and wondering "how did I get here? why did all of this happen?" I was questioning the reasons "why" and "how", which at the time, was completely normal. In a way, I was processing the stages of grief, going through a 'loss' so to speak - Wasn't in Kubler-Ross's 5 stages of grief: denial, anger, bargaining, depression and finally acceptance. I can say that I did, unequivocally, go through each and every stage, some longer than others, before I got to the place I am today - complete acceptance of my life's journey with the painful, pain in the butt condition. Two years ago today, I sat in my room looking out the window questioning all of the things I couldn't change wondering how my life would turn out when all was said and done. I spent 6 weeks at Magee Rehab Hospital recuperating from that terrible fracture sustained 6 wks post op from my first double-surgeries 1 and 2 in Jan/Feb of 2012. Breaking my back was such a significant set back in my life, and what made it worse was that it occurred during therapy (of which I am one!) and of all places, it occurred in my home, not in some rehab gym or outpatient center. It was not only embarrassing but it made me feel so stupid, admitting to people when they asked "How did you break your back? Were you in a car accident?" At which point I would answer with my head down and my voiced faded (hoping they weren't really listening and wouldn't even hear me), and say "No, I broke it in therapy....in my house....ya know, with those "safe" therapists?? The ones that come to your house?? Yeah, with one of those." Over and over, each time I said that to someone, I would say it a little louder and a little louder each time, although I didn't really notice it at the time, until finally I was able to say it with an audible tone and with sense of "yeah so what"ness about me. Hell, now I yell it!! "I BROKE MY BACK 6 WKS AFTER THE BIGGEST BACK-TO-BACK SURGERIES OF MY LIFE WHILE IN HOME THERAPY WITH MY PT!!! YEP, I REALLY DID!!" LoL. It helps to have a sense of humor (and a big bottle of wine doesn't hurt either!)

2 years ago today, I was not the woman I am now. 2 years ago today, I was depressed, crying, in a ton of pain, unsure of my future and unsure if I would ever be able to walk my kids to the bus stop or go to my son's soccer game (walking on grass, which is harder than you think! Break your back and try it ;) Not so easy) Back then, I was unable to really 'believe' things would be ok -- and as life would have it, things would NOT be ok later on that year and even into 2013 when I would undergo another THREE surgeries and fight off incredible complications including double pnuemonia, plueral effusions, 2 weeks of bone rattling chills and with a broken back it was excruciatingly painful, 104-105 degree fevers (Yep, adults really CAN get fevers that high) and then to really make things interesting, I'd spend 7 months suffering from what I thought was sinus headaches - I even had sinus surgery in an attempt to get rid of the unbearable 24/7 headaches, double vision and serious hearing loss....like in a wind tunnel or laying in the tube of an MRI....'wooosh wooosh wooosh'....I was told it might be migraines and then I was told it was definitely not migraines....it was no migraine alright...it was the direct result of what turned out to be a very large cerebrospinal fluid (CSF) leak and resultant headache. I felt like all I did for almost 3 years was climb mountains...and when I got to the top of one, I'd have to climb another one...it was hard for me to be optimistic, hopeful or live with a feeling of true belief and faith - to admit to anything less would be lying. I am not the person I was 2 years ago, but the person I was 2 years ago today helped shaped the person I am today. Today I am a woman who still struggles with some pain, and even different pain in different places but it is NOTHING like the pain pre-surgery or the disabling life I wasn't able to live. I am not only functional I am LIVING. I am no longer a spectator sitting on the sidelines of my children's lives....No, today - 2 years later, I am a busy Mom with a 5 and 7 yr old - I am a Mom who can have a catch with lacrosse stix and a ball with her 7 yr old son, or kick (GENTLY) a soccer ball with her 5 yr old daughter. I am a Mom who is able to walk her children to the bus stop, take a bike ride or go to the park - - 3 things that if you said 2 years ago today to me I would say you were crazy. 

The difference between who I was 2 years ago today and the person I am now is immense: I am active (but still definitely need to rest, and I do!!), I am living my life not watching it pass me by, I am providing a much more stable and healthy environment for my children to grow up in. I am a more positive, confident, happy woman - I am a better Mother to those 2 beautiful kids. I believe my past has no doubt, shaped who I am today - - Today, having gone through my own personal hell on earth - - going through all of that given me the confidence to take any challenge (physical OR mental) head on and with great confidence. I am grateful for the hoops I had to jump through NOW because each ''hoop'' at the end of the race was like my own personal Olympics, 5 hoops (rings) for the 5 unbelievable surgeries I went through in 18 months time. Each step each day during each therapy session felt like by the end of the race, like I had run up the steps of the Philadelphia art museum like Rocky did. I "ran" my own races and struggled with my own demons (physical and psychological) - - and in the end, I won. I got my life back, and I am now LIVING my life. I never want to ever go back, but without ever having lived through "2 years ago today," I never would've been able to say "2 years from now...."

5 Months Post-Op of Surgery #7

And doing AMAZINGLY well. I am now working 3-4 days a week as LEAD PEDIATRIC OCCUPATIONAL THERAPIST in a long-term care facility for medically fragile infant, young children and teens, the large majority of whom are trach and ventilator-dependent or who have traumatic or acquired brain injury. I see such tragedy, truly of lives cut short, waaaay too short and it makes me stop and appreciate, REALLY appreciate my life, who I am, where I've been, the journey and paths I've traveled and how it has changed who I am - it has made me a better, stronger person for having lived through hell and worse only to come out, by the grace of God, on the other side. I am so blessed, my children and husband and I are so blessed to have one another and I am truly a miracle walking...I thank GOD every day for my life and I wouldn't change a thing in my life as it pertains to my scoliosis journey. It's not over yet. It never will be. I have terrible knee and kip pain and my lower back although fixed (as in, my back won't go "out" anymore) I still struggle every day to be 'normal' and to do 'normal' things. My children (ages 4 and 6) help ground me and they know all too well what the face of pain, REAL pain looks like because last year, they saw me at my worst. I truly believe that the worse is behind me and that from her on out, I can handle whatever is throw my way - because somehow, and only with God, I made it through 2012 alive and not paralyzed. We are stronger than we think, more resilient than we even know and more courageous than we believe. BELIEVE IN MIRACLES.

Click on the links below to read more about scoliosis, flatback deformity, CSF leaks, etc:

CSF Leak showing dural enhancement
(all of the white surrounding brain

                           

Scoliosis before (R) and after (L) back in 1993 when I underwent the first of what would turn out to be 7 surgeries over 3 decades

National Library of Medicine: Scoliosis

MedScape Today: Spontaneous Intracranial Hypotension - A Comprehensive Review

Journal of Head and Face Pain: Spontaneous CSF Leak

Johns Hopkins Medicine: Low CSF Headache

Scoliosis Research Society: Find ONLY SRS Docs To Treat & Manage Scoliosis

National Scoliosis Foundation: Flatback Deformity

Anatomy Of A Spinal Fluid Leak

You may be wondering, "Ok, how does one KNOW if they actually have a spinal fluid leak or not?" Well, I can answer that for you...and I can actually SHOW you what it looks like on imaging studies done to look for such conditions. Thanks to advanced technology (and my iPhone!) I was able to bring up pictures of my brain MRI on my laptop and then take pictures of them with iPhone, which in turn, allows me to share them with all of you here on my blog! So here we go.

A little background. The brain and spinal cord are covered by a thin, protective sheath (or membrane) called the dura. It is extremely thin and delicate and it allows cerebrospinal fluid (CSF) to pass in and out, through and between as the CSF bathes not only the spinal cord but also the brain, keeping it happy and moist and in the brain's case, buoyant (which I will address the importance of later). Appropriate levels of CSF keep everything happy and in a state of homeostasis (remember that word from 7th grade science class?!?!) When you have too much fluid in the brain, you get something called hydrocephalus and often times a shunt is placed in the brain to drain out the excess CSF. In other cases where one doesn't have enough CSF, you get what is called "intracranial hypotension" (ICH, basically low blood pressure in the brain). The 3 most characteristic imaging features of ICH are (1) enhancement of the pachymeninges, or dura; (2) downward displacement of the brain ('brain sagging') and (3) enlarged pituitary. And lucky me, I happen to have all 3.

(1)

PHOTO #1: My brain MRI, which shows a thin white chalky outline especially in the front and top portion; the posterior portion is little more subtle but there nonetheless. You can also quite easily see something called 'brain sagging,' in which the most inferior posterior portion of my brain sort of bulges a bit.

(2)

PHOTO #2: Front and center you will notice a large dark spot (sorta look like a duck, LOL). At about 2 o'clock, you will notice a large pea-sized thing (that's my pituitary). It's apparently enlarged and should be about 1/4 of the size it is now. 

(3)

PHOTO #3: This image clearly illustrates all of the white (that should NOT be present) in and around my brain, including the sulci (the 'valleys' and little nooks and crannies of the brain). The brain on MRI should be gray and black and the only white part should really just be the skills, the thick white outermost part.

(4) 

PHOTO #4: The posterior aspect (looking at the inside of my brain as if you were standing behind me) illustrates quite a few things, all of which are indicative of a CSF leak. First, it again shows all of that white chalky outlining in my brain, and it even illustrates the sections of my brain (L, R and Cerebellum) quite easily because the lack of CSF literally 'outlines' my brain. Second, it shows 'brain sagging,' as you can very easily see that my cerebellum is basically sitting on the base of my skull, bumping up against the bony skull. (OUCH! PAIN!) Third, it also shows the dural enhancement surrounding my brain, very clearly in the top and upper side portions.

All of these images show what my neurosurgeon calls a "textbook CSF leak," where the brain is literally telling the doctors "Hey there's not enough fluid in here and we're not happy." These imaging findings cause a great deal of pain, which is why my head is KILLING me, the base of my neck and shoulders BURN, my eyesight is blurry (because the lack of fluid causes inflammation of the meninges and dura, which press on the optic nerve), whooshing in my ears (like I'm in a tunnel or a fan is blowing directly into my ears), and a few other things.

Looking at me, one would think "She looks ok to me" as there is nothing blatantly obvious - I'm not missing any limbs or getting around in a wheelchair. I can carry on a conversation. I can drive a car and do the laundry. It makes for a difficult explanation when on the outside I look fine but on the inside I'm a mess. My brain. My spine. My everything. This surgery HAS to be a success. There is just no room for anything BUT success....and failure is not an option. I hope my next blog entry is one where I am feeling good and doing well. I hope.

To read more about Low Pressure CSF headaches, click on the links below:

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/headache/conditions/low_CSF_headache.html#Symptoms

http://www.headachejournal.org/view/0/CSFLeaks.html

Hard to believe...but yes, just 2 days (less than 48 hours) to go until my 7th back surgery. I keep thinking to myself, "With every hour that passes, I'm that much closer to relief"[hopefully]. You have to weather the storm to appreciate the rainbow and right now, I'm desperately waiting that rainbow...

I went to my cousin's graduation party yesterday and saw at least 20 other extended family members. It was so nice to see and hang out with everyone and to see and spend time with my 96 yr old grandmother just makes these family gatherings that much more special. I have a very large, close-knit Irish Catholic family on both my Mom & Dad's sides. We love, support and pray for one other unconditionally and we're just a very strong, faith-driven family who enjoys spending time with one another. Yesterday was no exception. It does the heart good to see my children, now 6 and 4, playing my own cousins children. And the family just keeps growing and growing - with each new gathering, there is at least 1 new addition to the clan. Yesterday's newest additions were my cousin Sean's new twin babies, 6 months old (boy & girl), and they just stole the show. Holding them and playing with them just really confirms how important family IS to me...I am just so incredibly blessed to have such wonderful extended family and although we don't see one another as often now that everyone is older and moving in different directions, when we DO get together, the gatherings are that much more special and enjoyable. Family really IS everything - without them, I honestly don't know how I'd get through 1/2 of what's been tossed my way. So for that or for them, I am forever grateful.

As I sit here on my patio, enjoying the sunlight through the shade trees here in my backyard, I am reminded of the beauty in the simplest of things - shade on a muggy morning, birds hopping from picket to picket along the fence, hopping in and out of the sprinkler and opening their wings shaking the water through and off of their wings, bunnies cautiously hopping through the yard in anticipation of one of our dogs finding and chasing after them, I am just so blessed to be experiencing the "little things" in life, like the quiet solitude of an early morning coffee here in my shaded, beautiful backyard...

So, 48 hours from now, I will be well-into my 7th back surgery. I pray that the Lord guides my surgeons skilled and steady hands and that He leads them directly to the location of the leak(s) so that they can be repaired. These headaches, and the accompanying nausea and exhaustion that comes along with them, need to be fixed - I just cannot imagine living in this kind of pain for the rest of my life. My biggest fear, BIGGEST, is that I wake up and the surgeons tell me, "I'm so sorry Michele, but we didn't everything we could to find the leak, including removing your existing hardware and then replacing it again, but we couldn't find the site of the of leak." THAT is my biggest fear. I'm trying desperately to think only positive thoughts, I really am, but it is so so hard given the fact that although my brain MRI "clearly shows an obvious CSF leak," my spinal MRI was not so obvious. So the doctors are hoping it becomes more obvious once they're in there. And so do I.

Hospital & Surgery Details For Family & Friends...

Many have asked so I thought it might be helpful to just post it on here - the WHO, WHAT, WHEN, WHERE & WHY of it all...

WHO:  Me - mother to Matthew and Katie, wife to Chad, daughter to Don & Carole, sister to Denise & Donny (with whom I pray for a reconnection, an email, anything - if you're reading this, know that I love you both tremendously), friend, aunt to 7 nieces and nephews and more...

WHAT:  Spine surgery #7: (1) Repair CSF leak, (2) Exploration of spinal fusion

WHEN:  Tuesday, July 23rd, 2013 (arrive at hospital 6am, surgery starts 8am)

WHERE:  Cooper University Hospital - 1 Cooper Plaza, Camden NJ - 08103

WHY:  This is a tricky one but I'll try to summarize simply and concisely. I have a cerebrospinal fluid leak (CSF) which stems from the leak discovered in my most recent spinal reconstruction last November 2012. At that point, it was 'plugged' with the screw at T12 (the vertebra I fractured at 6 wks post-op in March 2012) in a washout surgery just 4 days after the larger one in November where they extended my fusion up to T2 and down to S1 into my pelvis (w/ pelvic anchors). In Feb 2013, I began experiencing severe, debilitating headaches - I tried everything (sinus surgery, new glasses) to try and eliminate the headaches but nothing worked. We moved from NJ to PA at the end of April and 4 weeks later I was in the ER, admitted with severe headaches after a brain MRI showed a significant CSF leak. I spent a week in the hospital and then spent the next 6 weeks seeking out 2nd, 3rd, 4th opinions. And they all said the same thing: surgery to fix the leak. I am not a candidate for the lesser and much less invasive "blood patch" due to the sheer volume of bone graft and fusion bone not to mention hardware in my spine.

DETAILS of SURGERY:  They will explore the fusion in both the thoracic and lumbar areas in hopes of locating and fixing the CSF leak. There is no guarantee that they'll even be able to locate it despite having evidence that one most likely exists at the level of T12 where the previous leak was. They have no idea about the length of surgery (stating "it could take 4 hours or 14, we simply have no way of knowing until we get in there and see what we're up against"), length of stay in the hospital, length of recovery or even what to expect pain-wise post-operatively. I was in the ICU for an unusually long time last surgery, 3 days. Typically one spends about 24 hrs in there and then moves to a regular room. Since nothing is "typical" or "regular" with me, the hospital has already prepared for the atypical, unusual surprises that most likely will come their way regarding my post-op care and recovery.

My Dad accompanied me this afternoon as we went to Cooper University Hospital to meet with the ICU Nursing and Management team. We met with the Clinical Director (MaryJo Cimino, one of Cooper's finest - she is the most wonderful, knowledgeable and experienced critical care nurses I have ever had the pleasure of meeting or knowing), the Assistant Clinical Director (Suzanne Gould, another one of Cooper's finest nurses), Maresa Class (Patient Representative and advocate for any and everything patient-related). We had a good discussion and they all helped to put some of my fears at ease...they can't guarantee anything, but they can guarantee that all the ICU and Neuro nurses who work with me will be fully informed and kept up-to-date on my medical issues and circumstances. That's all I can ask for. I know I will be in very competent, skilled hands with MaryJo and her team as well as my amazing and highly skilled neurosurgeon, Dr. Steven Yocom and orthopedic surgeon, Dr. David Clements. 

4 Days Til Surgery #7, on July 23, 2013

With just 4 days looming, my thoughts are very conscientiously being rerouted from ones of fear and "what if" to those which envelope optimism, positive thoughts and ONLY positive outcomes. It's all I can do to carry on a conversation without excusing myself to use the restroom (again, sorry TMI) but my nerves always do and always have gotten the best of me. I've always had the so-called "nervous stomach," every since I was in early elementary school. A family of worriers are we...lol...we put on a good 'game face,' but underneath it all, we're all pretty terrified each and every time I hear my orthopedic or neurosurgeon say "I'm sorry but you need surgery to fix this." From past experience, which is all we have to draw upon, my 'luck' hasn't been the best...but despite the numerous set backs and issues that arose during my last surgery in November 2012, I'm still here...still kickin...still putting one foot in front of the other...that's all I really CAN do...sometimes it's not one day at a time, more likely it's one hour and in really bad times, it's one minute at a time...

I've revisited this thought before but I find it necessary for myself to revisit it again...we all have our 'journey' in life. Some of our journeys are filled with laughter, excitement, happiness and smiles. Other journeys in our life take us down some scary and unfamiliar paths, and those paths stir up in us a sense of fear, sadness, trepidation and tears. It really isn't a matter of "being dealt a bad hand" in life or of not having good luck in life. It has nothing to do with those things. It has everything to do with your state of mind and how you choose to handle these journeys life throws at us - - and it is a choice. You can choose to be a prisoner of your journey or path and say "Oh poor me, look at all the difficult things I've had to overcome in my life." OR you can choose to DO something and MAKE something of your journey in life and say "Ok, here we go again...we did it last time, we will get through it again. Let's just hang on tight and do our best to come out on top." I often joke and say "Man, I must've been a prostitute or murderer in a past life - what did I do in my previous life to make God so mad at me that he'd 'make me' go through all these surgeries??" We get a good laugh out of it because we know it has nothing to do with 'past lives' or making God mad. It just IS - plain and simple. I have a choice every single day - to either give up or fight. I can't give up because, uh, well I have a 4 and 6 yr old who are counting on me and quite frankly, giving up isn't an option - it's just not in my DNA to 'give up.' So that leaves the only other option, which is to fight. Fight once again through this next obstacle, this hurdle we need to jump over in order to make it to the finish line. I know there is some profound "lesson" that I'm undoubtedly supposed to "learn" from all of these obstacles in my life, these journeys and paths that have been anything but straight and narrow. I feel like I've been paddling upstream with a teaspoon my whole life when it comes to scoliosis but what can ya do but just get through it? It's difficult, yes - it's painful, yes - it's gotten me down mentally, yes and it has tried my strength mentally, physically, emotionally and spiritually - yes, yes, yes and yes. But I must make one point perfectly clear: Crying in your cereal and whining about it doesn't change the reality of your situation so just do your best to get it together, focus and don't give up - never, ever give up.

So what's funny about this (and all that I write) is that I'm not saying it to be 'preachy' or anything. I'm almost in a way trying to re-instill what I'm writing into my own beliefs again, so I don't forget what it is i'm trying to remember to believe in! LOL! It's easy to forget and loose focus and so when I write and get it all out on "paper" so to speak, I am reminding myself of what it is that I don't want to forget. 

So with that - and with just 4 days left until surgery, I am trying not to loose focus on what is important and what it is that we hope to accomplish with this next (and God-willing LAST surgery)...my children first and foremost, are the most important two little people in my life. They are so little and so courageous. They know Mommy is going to the hospital because she needs her boo-boo's fixed again, but they also know that through all of the unknowns inherent within this next surgery, what IS constant and what IS known is that they are loved, secure and will always have people who love them and have their best interests at heart in their lives. My husband, my strong and supportive husband, who has been through as much as I have over the years with all of this, is my rock - he is always there for me in whatever capacity I may need him and for that I am eternally grateful. And then of course, there are my parents, who have literally given up months on end for me and my family, dropping everything often times with little or no warning, so that they could come up and be with us helping us out with everything and anything imaginable. Without their help and support, my family and I would literally NOT be able to get through everything we've gotten through. True angels here on earth.

"FEAR NOT, FOR I AM WITH YOU; BE NOT DISMAYED, FOR I AM YOUR GOD; I WILL STRENGTHEN YOU, I WILL HELP YOU, I WILL UPHOLD YOU WITH MY RIGHTEOUS RIGHT HAND." — Isaiah 41:10

SURGERY #7: 

Tuesday, July 23rd, 2013 ~ Cooper University Hospital

As I face yet another surgery, this one will be #7, I pray the Lord will guide the hands of my neurosurgeon as he works to find the exact location of my cerebrospinal fluid (CSF) leak. HE is the one in control. HE is the one steering this ship and I trust in HIM that all will turn out well and with the best possible outcome possible.

I go for my pre-admission testing tomorrow at the hospital. It's strange. It almost doesn't feel "real." IDK. It's hard to explain but it just doesn't feel real, like it's really going to happen in just one week. I hardly had any time to digest the information let alone schedule. The hospital called me last Tuesday and said surgery would be in less than 2 weeks because the surgeons didn't want to wait any longer. So whammo, there ya have it. Surgery in record time, which is great b/c I don't have to wait months and months like I did last time. But on the other hand it feels like it's happening so so fast that I don't have time to really digest it. I just know it needs to happen b/c living like this with this amount of pain is just not an option. I pray pray pray that this surgery, with all of the unknowns and all of the uncertainties that lies ahead, is the right decision. I hope that the Lord guides these surgeons hands and leads them to the problem area and that He guides them to FIX it. I have 8 days until surgery #7.....eight days....

Here We Go Again...

Do you ever wonder, "When will it end? When will my life be 'normal'? Was it EVER 'normal' or is this it?" Well, if you have - you're not alone! I am 7 months post-op from my most recent surgery in late November, where Dr. Clements performed a washout surgery, repairing a tear in the dura (the delicate sheath protecting the spinal cord). A tear is rather common in any kind of lumbar surgery and given the extensive nature of what I had done last year, a tear is no less surprising than was the pain following the surgery.

So, the last 6 months has been full of exciting and not-so-exciting things. In January we listed out house (on a Thursday to be exact) and by Monday we had 9 offers and sold our house in record time! No one EVER expected that. A true blessing for sure. We moved to PA, to a small town in the county full of rolling hills, farms and farmers markets! The kids couldn't be happier - they've adjusted far better than I ever could have imagined. My husbands' 90-minute commute home is now just 25 minutes and we're knee-deep in making this house our home. New paint (top to bottom), new flower beds and even a fenced-off garden in the back of the yard. It's lovely, really. A covered front porch with flowers and a swing and a paver patio great for entertaining and BBQ'ing. Heck, it even has a fire pit set with paver stones and gravel. Everything is falling into place nicely.

UNTIL...a point in early May when the headaches I've been having for 6+ months got so bad that I went to see an ENT (convinced it was another sinus infection), who then referred me to a neurologist the next day, who THEN sent me straight to the ER with a suspected low-pressure, low CSF headache. I was admitted right from the ER, spent 3 days in a local community hospital, and then was transferred to Thomas Jefferson University Hospital under the service of their headache specialist and neurologist. He too, was convinced that my headaches stemmed from low CSF pressure and that the only way to fix it was via a 'blood patch' which with all my fusion and bone would not be accessible or surgery to repair the leak. The headaches build as the morning and day goes on...and when they're really bad, I feel really nauseous. They're headaches that respond to nothing, medication-wise, as far as relief goes. With these kinds of headaches, this IS no relief except to lay back down and pray that I'll fall back to sleep.

I saw 3 specialists and consulted with two over the phone, the overwhelming majority was undeniable. My orthopedic surgeon had me see his neurosurgeon specialist last week and he was convinced that I needed surgery to repair what he suspected and was 75%+ sure of was a CSF leak. After speaking with my orthopedic surgeon this AM, he told me that if I were to have the surgery, it needs to be now, sooner than later. He said that although he's done thousands of spine and scoliosis surgeries, he has never done THIS kind of surgery, where he has no idea of how long the surgery will take and has no idea how long I'll be in the hospital because he has no idea how things will go once he's in there. Having never come up against a "case like this" with a patient presenting with atypical low-pressure headache symptoms, he's just not sure what he's going to come up against once' he's in there. For once, just once, I wish something about me was 'typical' or 'commonplace.' Unfortunately though, nothing about me or my scoliosis is 'typical' aside from the curves.

I need time to think...pray...reflect...on what I am about to potentially have to face...again...with time come clarity - and hopefully peace. I just want desperately to live a boring life, enjoying my family and children...and not having to worry about when my "other shoe" will drop. So for now, I pray...

11 Weeks Post-Op and Doing Great

It has been a looooooong time since I posted - and for that, my apologies!  It has been a whirlwind of a time.  Having had not one but two surgeries (11/15/2012 and then an infection made for a second surgery 4 hours in length on 11/20/2012).  I spent a month in the hospital, several days in the the critical care unit, then another few days in ICU and then finally into a regular room.  A 4-day stay at Magee Rehab was short-lived because I developed something called "Drug Fever" in which I was literally growing sicker and sicker with each passing day because I was allergic to the medicine I was on for the post-op infection, but it took them 2 weeks to figure that out.  I had fevers of well over 104 degrees, drenching sweats followed by bone-chilling shakes and chills - that went on 2-3 times a day and lasted 2 weeks before the specialists at the hospital even had an clue what was wrong.  They ran so many blood cultures that I became dangerously anemic, losing 1/2 my blood volume from both post-op bleeding and post-op infection and blood tests.  I developed bilateral pleural effusions, and needed to have the fluid drained in my lungs and surrounding space with needles. That sucked...alot...I don't ever remember being more afraid of dying in my entire life, ever actually. I remember quite vividly nearing my 2nd post-op week in the hospital (almost 4 weeks in the hospital at that point) and pleading my Mom, "You have to get me out of here...tomorrow...if they don't figure out what's wrong with me I'm going to die...and I can't...die..."  It was by far the scariest time of my entire life, aside from when my daughter required life-saving lung surgery to remove a tumor the size of an apple from her tiny chest at just 4 weeks of age.  THAT was the scariest time...this was the 2nd scariest...it was an ordeal, for me, my husband, my two very young children and my parents - who gave up 1/2 of their year to move in with us and help us with everything, big and little and in between.  It was a trying time, a scary very uncertain time, but all the while, we never lost hope...we never expected less than a miracle...and by the grace of God, we got one...we got alot of them....

Below is a poem that took several weeks to write...I decided to share it on here because I believe in it...I hope you like it....

MAKER OF THE UNIVERSE 

Maker of the universe, of fire wind and rain

How was I to go through that and ever be the same?

Maker of the universe, Your strength so great and true

How was I to find the strength if I did not lean on you?

Maker of the universe, Your love so strong and sound

You wrapped me in your tenderness, I prayed I would be found.

Maker of the universe, You carried me through my fears

In your arms of love and safety, you wiped away my tears.

Maker of the universe, You know me like no other

How am I to be a better person, wife and mother?

Maker of the universe, forgiveness is your doing

Give me grace when I have sinned and lead me where I’m going.

Maker of the universe, all praise and glory is yours

You alone are the reason why I’m standing on these shores.

Maker of the universe, You’re full of awesome power

Give me strength to carry on until my final hour.

Maker of the universe, I can finally see the light

My days are turning brighter as I’ve battled through the fight.

I made it through the toughest times, with You I have not faltered

My path, although a crooked one, I never would have altered.

---------------------------------

You see…struggles are perspective-based, it depends on how you view them

Don’t question why or second-guess, to do so is just futile

Instead…accept the things you cannot change and use them for good purpose

To live your life, as your Maker would have you live it, and praise Him for all things.

God is Great…Expect Miracles

I'm HOME...And On The Mend...

Well, a month in the hospital is something no one expected...ever! But I'm home! Finally...and in time for Christmas. Like my surgeon warned me, there was the potential for complications and I had several. The first surgery (the only one scheduled!) on 11/15/12 went well, all things considered. It was a long and grueling surgery and it was very painful coming out of anesthesia with 32 pedicle screws and 2 new rods on either side of my spine. But little did I know, that would be the least of my worries. 5 days later, I was put on the emergency surgery roster for excess fluid drainage from my 20" incision. The "washout surgery" was supposed to take about an hour but it took 4 due to the discovery of blood clots and CSF (cerebrospinal fluid) in my incision as well as a staph infection. SO, once I was all cleaned up and closed up and back in ICU, the hardest and most surprising part was coming off the ventilator. I had an extremely difficult time breathing on my own apparently and it took many hours for them to successfully extubate me without stopping breathing or having my oxygen levels drop. Eventually, I was moved to back to my room. The next day, I had trouble breathing and it was painful to take a deep breath. After an x-ray, it was discovered that I had bilateral pleural effusions and later that afternoon, my Dad came back to the hospital to be with me while I had the fluid removed from my lungs (well, really the area around my lungs...the space where your organs lie is called your pleural cavity; mine had filled approximately 40% with fluid).

After 8 days, I was transferred to a nearby inpatient rehab hospital, which was nothing like the experience I had when I went there in January following my initial fusion. The "room" was more like a "ward," holding 4 other patients and we were all sharing a bathroom and shower. It was a daily occurrence to see urine-soaked adult diapers on the floor in the bathroom and for a somewhat self-admitted germ-phob, this was my worst nightmare. "Privacy" consisted of pulling my curtain over in an area which barely covered my bed and having a "private" discussion with healthcare providers there was impossible. Aside from that, I had completed just 4 days of therapy before being transferred back to my original hospital (where I had surgery) for high fevers, chills and night sweats. I spent 13 hours in the ER before being admitted to a room and at that point, I had gotten very little pain medication and was in a ton of pain. It was nearly midnight by the time I had gotten a room and I arrived at 10:30am so to say it was a long day is an understatement.

The next day a ton of doctors came in to see me and by mid-morning, it was clear I wasn't going anywhere anytime soon. I had a fever of 102.6, chills so bad my teeth would chatter and my body would shake, sweats that required a change of clothes every 2-3 hours because I was soaking wet from the fever and a rash on my stomach and back. After a week in the hospital, 1000 blood tests and fevers that ranged from 102 to 103.8, the doctors were stumped. By the end of the week my blood count had dropped to an extremely low 6.4 (normal is 12), they decided to do a CT of my entire body - and they reserved an OR "in case they found something."  HUH??? In case you FIND something?!?!?! I was terrified. They didn't even know what they were looking for...yet they reserved an OR 'just in case.' Well, by the grace of God the CT revealed nothing abnormal...it was negative (thank God).

It was determined that when they put me on this medication to treat my staph infection from my incision, I had a severe allergic reaction to it. I had been on in for almost 2 weeks at this point, which is when a reaction would most likely occur. Allergic reactions are common but according to the doctors, an allergic reaction to this degree is not - as is having all 3 top symptoms: high fevers (over 102.4), chills and sweats, and rash. Lucky me I had all three. So once the medication was stopped and my system was continually flushed with the IV fluids, I started to improve. Within 3 days, I felt like a new person...no fevers, no rash, no chills or sweats. So I was discharged late Tuesday night, and as my husband carefully got me into the car, the cold air on my face felt amazing...so refreshing...he shut the door and by the time he opened his door and sat down, I was holding my face and bawling my eyes out...I was going home...finally...one month after entering the hospital for back surgery, I was leaving...having overcome so much more than surgical pain...I'm so grateful for being home - - and for being home in time for Christmas is just an extra special bonus. We definitely hit some bumpy and scary roads, but we made it...I say "we" because I didn't do this alone...my family played a host of roles including but not limited to babysitter for my 2 kids, cook, taxi, psychologist, listener when I needed to talk (or cry) and friend. "We" could not have done this alone - and "we" are very grateful that we're ALL here to celebrate the holidays together. I know 2013 will be better than 2012 - it certainly won't be as challenging and with the new year brings new hopes, new dreams and new experiences. And "WE" are looking forward to them all.

9 hours to go....

All I can say at this point is...there's no turning back! I'm about 9 hours away from what I am praying will be a safe, successful spinal repair of a badly fractured T12 as well as an entire-length spinal fusion with the exception of my neck. When all is said and done, I will be fused (literally) from top to bottom...but "All is well."

At bedtime, my 3 yr old cried for me for 10' and after that I just had to go in and hold her - rock her - one more time....before....well, then I went into my son's room and he was a little less upset but no less emotional - so after calming his fears of me going into the hospital (again), I reminded him that next week was a big day for Mommy - and that it just so happened that my birthway would be the same day as Thanksgiving this year - and he thought that was cool. BUT, then I made him promise me he would draw me a picture of a "Burkey" - - and he looked at me like "huh?" - - and I said, "Yep, I want a picture of a big fat yummy "burkey" - a birthday turkey! Can you make me one and color it in and draw a bunch of candles on it for me!?!?" And my son, "the professor" as we call him says (as he's giggling the sweetest little giggle you've ever heard) "Yeah, I will...but Mom, can't I just put a '4' and '0' on it...I don't want to draw 40 candles!"  HAHAHAHA!!!  That's JUST what I needed - a good laugh myself, complements of my almost 5 yr old. God I love those kids...tantrums and 'breakfast with a big bowl of grumpy flakes' days and all...they're my life...and I'm so blessed to have them in my life.

 

So with that, I hope I left you with a smile on your face and as much hope in your hearts as I have in mine. My "family" has grown by leaps and bounds over the past year, and I am so incredibly grateful and blessed to have each and every one of you in my life. I honestly don't know how my family and I could have managed to make it through this year without ALL of your love, support and friendships. So don't worry too much - I have an incredibly talented surgeon, an unbelievable support system and a solid faith in God that I will be ok...and in the not-too-distant future, my family and I will wonder how we ever weathered that year...2012...

 

Until I see you again....

 



3 Days To Go...

I can't believe I only have less than 3 days left. My husband left at 5am this morning for the airport and week-long training for his new job. That was hard. Knowing he won't be with me in the 'holding area' just before I go in for surgery was really really hard. But neither one of us could change the situation and so we had to accept it and look on the bright side: he'll see me the day after my surgery (on Friday night) and will come straight from the airport as soon as his plane lands. Another bright side is that my Dad will be with me and will have the daunting task of telling the surgeon, "Take good care of her" not once, not twice, but five times now. And I trust that my skillful surgeon and his team will do just that. So instead of crying about what I can't change, I'm making a conscious decision to accept it and hope for the best. 

Today is Picture Day at my kids' school...so of course my daughter was beside herself with joy that she got to wear her favorite dress - my son, well he wasn't quite as overjoyed at the thought of having to dress up in  khaki pants, a button down shirt and sweater. But Oh My LORD, did they look adorable all dressed up...and so grown up too....(sniffle sniffle)....my "babies" are not babies anymore.  In fact, this morning while eating breakfast, my 3-1/2 yr old (out of the blue!) said, "Mommy! Hey Moooommmmmyyyyyy! I'm a 'people' now...I'm not a baby anymore...I'm a 'people,' like you and Nana and PopPop and Daddy" (and so on down the line). Gotta love how 3 yr old's talk. And she's absolutely right. She and her brother aren't babies anymore...they're 'peoples.' And my little 'peoples' have grown into such big kids already!

So with just 3 short and fading days to go, I'm trying to find things to do to keep me occupied and so what a great reason to have another manicure & pedicure 2 weeks in a row?!? It was wonderfully relaxing and it was nice to get out with my Mom for some much-needed pampering. And at the end of my pedicure, when my Mom had already finished and was waiting just a few feet away while sitting in a chair, I was abruptly and very sternly reprimanded by the girl doing my pedicure. I didn't understand one word the whole time I was there - EXCEPT the music! I just nodded and smiled and agreed with everything they said - they could have said they were charging me triple and I would've agreed. So, along comes a song on the radio. One I happen to like, and so quietly under my breath, I start to sing along! Who cant' help but sing along to Tao Cruz "Dynamite" or Will Smith's back-in-the-day 80's tune "Jiggy Wit It" (LOL!) Me!!!  That's who!!!  Well, this happy and smiling nail girl immediately scowled and looked up saying "NO SING!" At first, I didn't know what she said and so I repeated it to her twice saying, "No sing? As in don't sing??" And she again looked up again and said, "NO SING!" - and so what did I do??  Yep...you, guessed it...I sang!  My Mom and I smirked and giggled in utter disbelief at each other from across the room, trying desperately not to laugh out loud let alone, dare I say it, SING! It was hysterical. Ah, the little things in life - - like singing when you're "not allowed." It wasn't like I was ACTUALLY 'gettin' jiggy wit it' - I can barely sit and walk any distance without pain so it's not like I was actually bouncing around in my seat and wiggly all over the place!  Good grief!  Well, my Mom & I got a big laugh from it. I guess I've always had a bit of an edge like that - tell me not to or that I can't and I'm probably gonna! Nothing bad or illegal or anything but when I'm told not to sing when I'm getting my feet massaged and trying to relax!!  Seriously!?!? So that was funny - and for the record, SING WHENEVER YOU WANT!  Life is too short. Like that saying goes, "Dance like nobody's watching and sing like nobody's listening."

This may or may not be my last post before surgery depending on how things go over the next few days so I wanted to share this with you all in case I forget.  I recently got an email from a former co-worker of mine (also an OT). She and I always got along very well and I really miss working there and the people with whom I've worked despite having only worked there briefly. Anyway, in her email, she commented on "how strong" she thought I was. And my immediate knee-jerk reaction is, "Uh, have you seen me lately?! I'm a lot of things but strong is not one of them!" I see myself as just the opposite and said to myself, (self...) "I'm glad I come across as strong because I sure as heck don't FEEL or LOOK strong!" But then something makes me take a step back...it's perspective...it's how I see myself at this point vs. how I saw myself several years ago or even decades ago. Playing soccer all the way up through and including college, I would definitely agree that I was strong back then. Having had two children without pain medication or an epidural, yes, I was most definitely strong then too. But now? Barely getting thru the day and having difficulty doing the most basic tasks (like getting dressed, folding laundry, playing outside with my kids) - I'm not strong at all when I look at myself in those terms. But then I step back...it's perspective...again. I may not have the physical strength I had 20 years ago (or even 5 or 10 years ago), but I've gained strength mentally and spiritually that I would have never believed possible 5 years ago. I have found new strength, renewed strength in things like relationships...with friends, with family members, with myself...with God. I realize that my physical strength may not be what it once was (and most likely it will never be that way again) but my inner strength (strength I didn't even know I had until I was faced with what 2012 has brought me) has grown, matured, flourished in the face of these trials, set-backs, pain and uncertainty. I have grown in ways I never thought possible despite my declining physical strength. At times my mental strength is pitiful and I crumble but that's being human...and that's ok...and what I'm facing is painful and difficult, not just for me but for my husband, my children, my parents...everyone.  And so if someone makes mention of my 'strength,' I give it all to God's grace because without Him I wouldn't be able to get through all of this.

I see it like this: God is driving this train and I'm just going along for the ride. Granted, sometimes the ride is pretty bumpy and sometimes it feels like the train is going too fast and will derail at any moment. And if it does, He is with me; I am not alone. I will never be left alone. He promised and I trust Him. As isolating as this situation feels and as small as my physical world has gotten as a result of my pain and limitations - I am NOT alone. I think for the first time in my almost 40 yrs of life, I'm actually starting to believe that. And that's progress....HUGE progress from where I was 18 months ago! 

"My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." (Psalm 62:1-2)

6 Days To Go....

Well, this time next week, on Thursday night (11/15/2012), I will hopefully resting comfortably in ICU following what I hope and pray will be a very successful surgery. I'm trying to keep myself busy, mentally and physically - well, ok mostly mentally...the physically part basically consists of me walking my 7 month old yellow lab, Molson (as in the beer) around the block, but at least it gets me out of the house and doing something. I've also become highly skilled in the art of folding and refolding clothes - mainly my kids clothes - they could care less how long it took Mommy or Nana to meticulously fold their little shirts and pants and place them neatly in their drawers. They just rummage through them like the kitchen 'junk drawer' (c'mon, you know you have one too!) My husband and I went out for a loooooong overdue 'date night' last weekend and we had a great time. It was so nice to just sit and talk and not worry about whose touching who at the dinner table or whose tossing what they don't want to eat onto the floor. So this is what sanity feels like?!?!  It's been so long I forgot what it felt like, and it was just wonderful to get out with my husband, even if it was only for a few short hours. We have another 'date night' with my church group this Saturday night as well - - woo hoo for us - - going out 2 weekend nights in a row!  I can't wait to get out again; it will be our last date night for quite some time...

Mentally, it's been a bit harder for me to occupy the spaces of my brain and retain important or useful information  for more than a few minutes...and then I'm confused and the information and what I thought was correct becomes jumbled and incorrect. And if it requires more than 2 steps, forget it!  Ok, (1) open microwave, (2) insert strawberry PopTart....uh....oh yeah, press 'start' - NO, enter 20 seconds then press start. And be sure to remove the FOIL WRAPPING! You should SEE the sparks that fly when you don't (not that I know first hand or anything....I'm just saying...)  Anyway, if you ask anyone whose had regular contact with me, especially the poor (and very patient, understanding) teachers at my children's school, they'll tell you just how mushy my brain and memory has become. If I'm not forgetting this, I'm mixing up that. It's terrible. And for anyone who knows me....really knows me, they know that I am sooooooo not like that. Not all that long ago, I was sharp as a tack, had a list (and highlighter) for anything...no erasing, just rewrite the whole darn thing! Now I'm lucky if I remember to bring my phone, which contains the list of items I need at the store. And I'm no psychologist, but I'm fairly certain it's due to the amount of stress and anxiety I'm feeling at this point. If I'm not worrying about whether or not I'll be ok after all is said and done next week, I'm worrying about my husband, my 2 young children, my parents. All of this has taken such a toll on my family. And we're all exhausted...mentally, physically, spiritually...2012 was definitely NOT one of our better years and I'm very hopeful that 2013 will be alot better for us.

My friend at church, who is extremely active in a variety of ministries, including book studies sent me this excerpt from a book they're reading called "Unglued," by Lysa TerKeurst. In in, the author is discussing some Bible versus (Romans 12:2, 2 Corinthians 10:5, Jeremiah 29:11). She sent the following to me because when she was reading the book, she thought of me. It's no secret I've been struggling...with everything...I will end this post with an excerpt from the book that seems have my name written all over it...it is so unbelievably true no matter what mountain you're climbing or what stuggles you're dealing with.

"I can't control the things that happen to me each day, but I can control how I think about them. I can say to mgyself, 'I have a choice to have destructive thoughts or constructive thoughts right now. I can wallow in what's wrong and make things worse or I can ask God for a better perspective to help me see good even when I don't feel good. Indeed, when we gain new perspectives we can see new ways of thinking...But I couldn't just say it or think it. I had to believe it. And in order to believe it, I had to settle a matter of trust in my heart. Could I trust God and believe that He is working out something good even from things that seem no good? You see, if I know there is potential good hidden within each chaotic situation, I can loosen my grip on control. It's easier to loosen my grip when I can see the good. When I can't immediately see the good, loosening my grip becomes a matter of trust. Either way, as long as I believe - really believe - God is there and that He is out to do me good. I can stop freaking out trying to fix things on my own. I can rest in the fact that God is in control which means I can face things that are out of my control."

 

 

 

 

8 DAYS TO GO.....

 

The "8 Ball."  Am I behind it or in front of it?!?!  I have no idea why, but I like the look of a big black and white 8 ball staring me in the face. In "pool" or billiards, if you sink it, game over. I don't plan on sinking my eight ball anytime soon!  I look at that big 8 and I "feel" lucky, fortunate, blessed, whatever term you prefer. No idea why but I do. About a year ago, I said to my (new at the time) friend Heather, "I am so lucky to have found HOPE Church and to have made so many new friends here." She just smiled and got this funny look in her eyes and said say, "Oh Sweetie, luck had nothing to do with it - the Holy Spirit had His hands all over this one." And was absolutely right. Luck had NOTHING to do with it. I found myself saying that exact phrase to my Dad a few weeks ago when I took him to 'my church' - I had introduced him to the Pastor and my Dad said something like, "She is so lucky to have found such a wonderful church and so many wonderful friends here at HOPE." The Pastor and I looked at each other and then I smiled and said, "Dad, luck had nothing to do with it. The Holy Spirit had His hands all over this one." What a great moment.

Somehow 8 days seems like an eternity, yet it seems like it's right around the corner too...like next weeks' corner! I remember counting down the days until my very first surgery - I was so naive back then; totally blind as to the mountain I would have to climb once all was said and done. I remember being a little nervous but ir wasn't all-consuming; I was young and had no idea what I was about to do and just how much pain I would be in afterwards. In a way, it was good - sometimes not knowing is better - but I know now - and it doesn't help.

 

A person, I'll call her an 'acquaintance' (and she will remain anonymous) said to me a couple months ago when she learned of my upcoming surgery (with a bit of an 'edge' to her tone I might ad) ,  "Well it's probably like childbirth, right? Somehow your body just knows what to do and just does it?" "Uh NO! It's nothing like childbirth but thanks for offering your unbelievably idiotic point of view." I was so taken back by her comments, I just chalked it up to ignorance. Childbirth lasts for hours, some times 4 to 24 but it's only hours, (and yes in rare instances days) but it doesn't last weeks, months or years; childbirth was something I excitedly anticipated because in the end, we would get to hold our beautiful little baby in our arms; and childbirth was a magical, miraculous process that only women are blessed enough to experience. It reinforces our strength (Our poor husbands wouldn't last 2 minutes into labor! Sorry guys). Spinal fusion surgery is nothing like childbirth. Absurd! I guess I can't fault her for having no clue as to what it's like to go through something like this - it's like trying to explain heaven. You couldn't possibly describe it unless you've actually been there and even when you've been there and it's not your time and you come back, you still can't explain or describe it - unless you've been there! In hindsight, I think in her own way, she was probably trying to make conversation as well as try to ease my mind. Either way, it didn't work.

There is just no way on God's green earth I can compare this surgery to childbirth; having experienced both several times now, trust me on this one. When surgeons are pulling out DeWalt power tools and hammers, you know it's bad. Unless you've actually HAD this kind of excruciatingly painful, extensive, invasive, pain-so-bad-you-can't-imagine-it-if-you-tried surgery, then you can't (and shouldn't) attempt to compare it to anything (other than maybe open heart surgery)! I had both of my children au naturale...just me, myself and I working towards a common goal - get that baby out...and fast!!! At least with childbirth, there was a beautiful baby at the end...there was a "prize" - there was this teeny tiny, squishy, beautiful baby at the end of all that hard work and within 30 minutes of  I felt great! No so with this kind of surgery. I like to think that when I'm in that operating room, all the angels in my life will be crowded around me watching over me that there will hardly be any room for the surgeon and his team of physicians.

With this type of surgery, especially a 15-level fusion, there really IS no "prize." There is the 'chance' of a parting gift, like a 40% chance of 'some' pain relief. Daunting be very necessary. There is no magic cure for scoliosis - no pill, no exercise, no operation will ever get rid of it. It's painful, very painful at times. Scoliosis surgery gives no guarantee of pain relief, no guarantee of improved quality of life, and certainly no guarantee that significant complications can arise (like bleeding, infection, need for more surgery, non-fusion, hardware defect and most important, surgical competence of the man or woman operating on you!) Surviving the 8-10 hour surgery and not catching staph or some other kind of infection is like throwing the winning touchdown in the Super Bowl. You don't really "get" a prize. You get (at best) Happy Meal toy, which may or may not result in less pain, more mobility, less physical deformity and more life-living activities.You wake up in agony, remain there for days, then you're sent home (often still in extreme pain) to remain there some more. I'm not trying to be a downer but this is the reality of it. I'm just being honest - which is what I said I be when I first started this blog. Some may ask, "Then why even bother going through such an ordeal?" My answer is quite simply: "Them. Those two beautiful children pictured below that God gave me. They deserve to have their Mommy back and I'm going to try and give her to them."

As much I want to do this for ME and for the chance of a life with even a little less pain, I'm also doing it for those 2 beautiful kids. I'm going to try and give them "me" back - because I'm not the same "me" I was even a year or two ago. I'm grumpy, impatient, in constant pain. It's not their fault we can't go to the park, or zoo or on day trips or outings...it's mine..."Mommy's back hurts" - that's all they hear. And it's not fair to them (or me or my husband). It's become normal for us to stay in all the time. And when we DO go out somewhere, they're so excited! How sad is that??  As for this surgery, it's the only option I have right now. Right now, today, I'm merely existing. Going through the motions in constant pain. I don't whine and moan about it...but people who know me say they can "see it" - my facial gestures, the way I'm walking, just how I look. When you get to the point where I am, quite simply, what do you have to lose???  Nothing!!! When your kids refer to the hospital bed in the living room as "Mommy's bed" or 'Mommy's room," you know it has gotten bad. This hospital bed has sadly become another piece of furniture in my living room, like the couch and end tables. I sleep alone, every single night down here; I can't sleep in my own bed because I can't roll over with tugging on my husband and waking him with all my grunt-filled attempts at rolling over. My 12 yr old pup Macy keeps me company. But it is lonely. And it is time for something to go my way. And I'm praying that this surgery is it. I have plenty of time to think down here by myself - and so I dream of the time where I'll be able to kick a soccer ball with my son and not have to stop after 3 or 4 kicks b/c it just hurts too much; I would love, for once in my life, to NOT worry about how far or how long I'll have to sit in the car to go somewhere; to wake up or go to bed without all this pain; to sleep more than 3 hours every night; I would just love to have my life back.

 

With no other options on the table, I really AM looking the bull in the eye and saying "C'mon, I'm ready." And I am. I'm ready to have a chance of getting even a small portion of my LIFE back...I'm tired of being a spectator in my own life and it's time I got back into the game of life....of living life with my family, friends, etc; of going to the zoo or taking day trips to Ocean City. Now that I'm facing surgery #5 in just 8 days, my stomach is remembering all-too-well the pain that i will once again be facing. I have to admit though - that through every trial and tribulation, thru all of my ups and downs, through all of my physical gains and even the setbacks, I never threw my hands in the air said "That's it. I give up. I'm done." I can't...for the sake of my husband and children, I can't just give up and remain stuck here" thinking about all the things I'm missing out on and what I wish I could be doing. A family vacation - could you imagine!?!?! I'm tired of merely existing...therefore, I'm trusting God that He will carry me through this operation and recuperation - He is all that I need and He will carry me through the difficult times like He has done time and time again, whether I realized it at the time or not.

 

When every step is so hard to take
And all of my hope is fading away
When life is a mountain that I can not climb

You carry me, Jesus carry me.

You Are strength in my weakness
You are the refuge I seek
You are everything in my time of need

You are everything,

You are everything I need

When every moment is more than I can take
And all of my strength is slipping away
When every breath gets harder for me
You carry me, Jesus carry me

You are strength in my weakness
You are the refuge I seek
You are everything in my time of need
You are everything, You are everything I need

I need You
You are everything I need
I love everything about You

You are strength in my weakness
You are the refuge I seek

You are everything in my time of need



12 Days To Go...

Well, so much for the single-digit count down. Back to double digits.  But i just thought of something that will hopefully help me get through the next (almost) 2 weeks....#12 was (and still is) 'my number.' It was my number all through high school and college playing soccer and my little guy even got a #12 jersey when playing soccer (and it was completely random!)

Maybe that's a good sign. I don't really believe in 'lucky numbers' and good luck charms or anything but the #12 just pops off the page at me as I type this - - 12 days to go - - and hopefully after all is said and done, I'll be less of a spectator and more of a participant in the lives of my husband and children. Every Saturday, my son asks "Mommy are you coming to my soccer game today?" and every Saturday I have to tell him the same thing: "I doubt it buddy...it's a lot of walking and it's really far from the car to soccer fields. We'll see though." He's had 8 games and I've made it to a grand total of 2 and that was only 30' for each. I really want to go to his games and enjoy them and not be in so much pain; and I don't want my first thought to be 'how far is the walk' or 'is there anywhere to sit?' Pretty sad. But I can't beat myself up about it. I always make a big deal when he walks in after his games and my husband always takes pictures for me. So we manage. But I want nothing more in life than to have this surgery help my pain, even if it's just a little bit, so I can start living again.

 

There is so much to do and see and i feel like it's all just passing me by. So to get me out of my funk, I decided to make a list of my TOP 12 THINGS TO BE HAPPY ABOUT. So here it goes:

1. My wonderful husband who loves me, broken bones, grumpy days and all without hesitation

2. My two amazing children who gave me the gift of 'motherhood'

 







 

3. Stopping to smell the roses (or any other pretty flowers)...literally



4. Waiting for a sunrise...then watching the sunrise

5. Watching the sunset over the ocean...it's an amazing sight to see, as if the ocean swallows it up

6. Making new friends...and keeping them





7. Telling someone you love them...and meaning it...

8. Great big bear hugs.....



9. Falling in love....and staying there...

 

10. Watching your children sleep...

 





 

11. Sinking into a HOT BATH and drifiting away to anywhere but here...it's a place where pain  doesn't exist and bones and muscles don't hurt...

12. Watching the joy on your children's faces when they play in the leaves