About Me

My photo
In 2012, I had 2 operations back-to-back. It was an excruciating and grueling recovery. I was doing well until about 8wks post-op when I broke my back (T12 transverse process) in therapy. I spent another 10 days in the hospital and a month in an acute rehab facility. I was in a clamshell brace for over 8 months with no improvement. I underwent surgery #5 on 11/20/12 and required a 6th surgery on 11/24 due to serious complications. After spending another month in the hospital, I finally came home on 12/21/12. Recovery has been difficult and challenges seem to pop up whenever they get the chance. My most pronounced challenge are these terrible positional headaches that started in early 2013. I had a prior CSF leak in Nov 2012 however both the neurosurgeon and ortho surgeon believe it's occurring all over again as my brain MRI shows "clear & obvious indications of a CSF leak." I had at least 1/2 dozen consults with various specialists to determine what would be the best course of treatment and since bed rest hasn't worked, surgery is the only option left. Surgery #7 is full of unknowns regarding length of surgery, stay and recovery.

Friday, February 24, 2012

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~!!!



Monday, February 13, 2012

I'm going home!!!

Tomorrow marks 3 weeks post-op from surgery #1 and 2 weeks post-op from surgery #2. Three weeks ago today, I was packing my bags for the hospital. Hard to believe! I was nervous and eager to get things going. Well, we got them going alright! And now I'm heading home after spending 2 weeks in the hospital and 1 week in a sub-aute rehab facility. Although things didn't exactly go according to plan, they went well for the most part. Surgery #1 was the first hurdle, and in looking back on it, I cleared it with relative ease. Surgery #2 was a different story: 9 hours, lots of blood lost, difficulty handling the morphine which was wrapped around my spine to maximize pain management, 36 hours of the most bizzare and at times, the scariest hallucinations you could ever imagine -- and then there's the whole acute rehab nightmare of "he said, she said" surgeon vs. insurance company which in the end I never DID get to go to an acute rehab facility. Instead, my choices were (per my insurance company) to either (1) go straight home or (2) go to a subacute facility (aka: nursing home) for a week or so.

Given those two crappy choices, I made the only decision I could which was rehab, even if it wasn't what I had planned for, expected or wanted. It was something - and at that point in time, going home was NOT an option. So I made the most of my time here and worked hard (or as hard as my body would allow) and now I'm going home tomorrow! On Valentine's Day! And in plenty of time for my son's 5th birthday, which is this Sunday! All of my equipment will be delivered tomorrow and I'll have a full first-floor setup, including a hospital bed, rolling walker, raised toilet seat and a variety of dressing aides designed at increasing and maximizing my independence. Visiting nurse comes out on Wednesday and home therapy (PT and OT) will be set up for 3x/week starting next week. Eventually I will be able to go for outpatient PT but right now, it's too early.

"So, how am I doing/feeling?" - Well, I'm doing pretty well considering I feel like Humpty Dumpty...except instead of falling off a wall, I feel like I was run over by a tractor trailer a few times. My insides were, at one point, on the outside which from what I've learned - they don't like being on the outside! The worst is most definitely behind me at this point...no more blood transfusions, fevers, scary hallucinations, blown veins (the central line took care of that!), panic attacks, etc. I am definitely in pain but it's a different kind of pain now...more like a healing pain. It's difficult to get comfortable and I can't stay in one position for too long but I'm quickly learning what works and what doesn't work as far as that goes. It's trial and error. I don't have nearly the amount of endurance and energy I had before the surgeries and so I often need to rest, semi-reclined. Sitting in a hard chair for too long is very painful so moving around helps keep me from getting stiff. I have right-sided weakness in my right leg and numbness from my knee to my hip bone which I didn't have prior to my surgeries which is slowly getting better with each passing day. I notice the leg weakness most when I'm tired or when I go up/down steps. My blood pressure, which was incredibly high prior to surgeries has since gone in the opposite direction and is extremely low. That, along with feeling cold all the time, feeling tired/fatigued and looking pretty pale, is from the anemia which I developed from the extensive blood loss during my second surgery. Nothing a few doses of iron for a few months can't cure though!

I am getting stronger and stronger each day and although I still need assistance with some things (like getting in/out of bed, up/down stairs, getting in/out of a car etc), there are a lot of things I can now do on my own (like put my brace on/take it off, dress myself with the help of some really cool gadgets and get up/down from a chair). Of course, I can't drive yet or do household tasks but I can cuddle my kids and read them a book or play a game while they sit on the bed with me. It'll be a long time before I'm back to myself again but little by little, day by day, things get a little bit easier.

One thing that made this past week in rehab a lot more difficult was the fact that we had to very suddenly put our 3yr old lab, Tango, down last week. It was sudden and extremely sad not to mention untimely as I didn't even get to say my final farewells to him, but Chad and I take comfort in knowing that he is no loner suffering and he is now free from the uncontrollable seizures which plagued him for the past year. It hit me like a ton of bricks when I walked into the house yesterday, home for a few hours on a day pass from rehab, that my crazy happy gorgeous Tango was no where to be found. It was sad - and we will miss him a lot.

Tuesday, February 7, 2012

Surgeries are OVER --- Hooraay!!!

Well, it's over and done with now and I'm finally "on the other side!" It feels so good to be here. My first surgery on 1/24 went well (5-1/2 hours, ALIF at L4-L5, L5-S1 with back plate and pedicle screws). Second surgery on 1/31...well, bumpy to say the least but here's the low down: 9+ hours, PLIF fusion L1-S1 with pelvic fixation, and had laminectomies the entire length of my spine (lost 1/2 my blood volume and am very anemic and weak right now as a result), removal of Harrington rods and hooks. Had difficulty coming out of anesthesia and remained in PACU for a long time (several hours ) and spent 2+ days in ICU and received several blood transfusions back of my blood back afterwards due to the amount of blood loss. And let's not leave out the 24-36 hours of morphine-induced hallucinations. My spinal cord was wrapped in morphine as a method of pain relief for after surgery and apparently, my body doesn't like morphine! I had the most terrifying visual and auditory hallucinations of my entire life (even worse than '95 back surgery when it was "raining on me" and eventually went blind for a few hours - oh I was MUCH worse and very scary!)

BUT, thats behind me now so it's all good from here on out! It was bumpy but all in all, I am so glad I decided to have this done. I even grew a few inches as a result! No more "shopping cart syndrome" (as I call it) - I stand tall and straight and (although painful) proud! I am currently in a rehab hospital just 5 minutes from home and will be here for a couple weeks to build up my strength and endurance. I get so fatigued from even the smallest things but that will improve over time. I also have moderate weakness and numbness on my right leg which the doctor thinks should resolve in time. AND, I got to see my kids today forethe first time in 2 weeks! It was wonderful to see them but I have to admit, after their visit, I was exhausted. I am no where near ready to come and handle the house and kids yet! Once I'm home I'll have PT/OT a few times a week and then eventually graduate to outpatient. I'm in a brace when out of bed for the next 3 months and am doing well overall I think. The pain is manageable with pain meds and like I said, although it was bumpy, I'm so glad I did it - everyone looks so much shorter than me now! I've had and continue to have the most loving and supportive family and friends on earth! My hushand, parents, aunts, uncles, cousins, friends including MOPS and HOPE, just EVERYONE has been truly amazing with the amount of encouragement and support - and for that, I am truly blessed and most thankful. Nothing but brighter days ahead - sure there will. Be blips and bleeps along the way, but things will only get better from here on....

Sunday, January 29, 2012

1 Down, 1 To Go....5 Days Post-Op

Well, HHEEEELLLLLLLOOOOOO everybody!!! I'm here! I made it through the first surgery with flying colors and it only took 5 hours instead of 7 which is great. I am now day 5 post-op and am feeling better each day. I spent 48+ hours in ICU from Tuesday until Thursday early evening. I have been in a small private room with the most wonderful nurses and aides on earth! I am now able to wit and wash with setup, brush my teeth, get on/off toilet and in/out of bed unassisted. I am very pleased with how I'm progressing - the stronger I am going into the second half of this surgery the better I will do post-op. Yesterday I even walked about 50 ft and did 5 small (lower height) steps with PT (up and down!) My abdominal pain is/was alot worse than I had anticipated but that too, is starting to feel a little better each day and I'm hoping it'll continue to do so. I had a PICC line put in on Friday because with all the poking and prodding and irritation that was happening (not to mention that IV's only last 4 days) it was suggested that have a PICC line put in so that I could get fluids, meds, blood draws, whatever - directly from this site. So that was fun (NOT)! I've had someone here visiting with me (either family, friends or both!) each day which is nice. Part 2 will take place on Tuesday morning as planned barring the unforeseen. This one coming up is "the big one" - I'm still really nervous about it but atleast all these great medications help keep me from stressing out too much! HAHA. Last night I woke up twice this excruciating pain in my sacrum/tailbone area which I was told is most likely muscle spasm. Ugh! THAT was pai Ive never had before so hopefully it won't be back for another round tonight. So, with that as my update, I think I'm doing fairly well. Please continue the prayers for Jan31 -- that's the BIG ONE! And totally offi topic, the nurse just came in and said that the CNA would be in soon and that i can take a shower!! Yay!! Oh it's the little things in life!!!

Monday, January 23, 2012

Tomorrow is the day....

1 more day…I have to be at Cooper Hospital at 6:30am!  Bright and early!  But by this time tomorrow, I’ll be out of surgery and recuperating quietly, comfortably and uneventfully…and at that point, it’ll be “one down, one to go!”  I am scared, anxious and eager to get this over and done with so I can move on and get back to enjoying the little things in life again.  I am confident in the skills, knowledge and expertise of my surgeon as well as the team of doctors and nurses who will be helping me along and taking care of me through this part of my journey.  We will get through this.  It won’t be easy – but we will get through it.  Fortunately, I am blessed to have an incredibly supportive and loving network of family and friends (and even some strangers!) who have been praying for me and my family for months now.  Believe me when I tell you that we feel your prayers and support and we are so thankful for it.  I will post updates on how things are going along the way.  Thank you once again for your continued love, support and prayers – they mean so much to me and my family.

“Somewhere Over The Rainbow” -  Israel Kamakawiwo'ole


Sunday, January 22, 2012

Keep on keepin' on...

Today is a tough day – tougher than other days have been for some reason.  Im in alot more pain and i'm a whole lot more emotional.  I can literally cry at the drop of a hat.  I’m trying to stay positive (God knows i'm trying) but today it’s just harder to do for some reason.  Sometimes, we have “loose ends” with people in our lives - people we love and miss very much – people we wish we could see and talk to more often.  That’s where I am today.  I suppose anything is possible but in this situation, it’s not likely that I’ll be tying up my loose ends before Tuesday.  It’s just “one of those days” – cloudy and cold outside, exhausted physically, mentally, emotionally – I’m just so tired. 

With just 2 days left until my first surgery, the months of preparations have come to an end:  weekly blood donations (4 total), several pre-op visits with the surgeon, an afternoon of pre-admission tests at the hospital, filling out endless and repetitive disability and FML paperwork, making lists for this and that, and cleaning the house (Oh Lord, the cleaning!!) – I feel like if I stop, even for just 3 minutes, I’ll either do one of two things: (1) pass out from sheer exhaustion, or (2) get all rammed up and start feeling my heart in my throat again (not a good feeling).  So with that, I clean and organize and re-arrange and re-organize!!  Everything!!  I completely understand why I’m doing it though.  It’s because I can control some aspects of this situation (how organized or clean my house feels, for example), but what I can’t control are these surgeries and what lies ahead for me and my family.  And anyone who knows me knows I’m the poster child for a “Type A” person.  When I stop and sit – just really sit, alone with my own thoughts, that’s when the real feelings and fears creep back into my head and the tears start falling.  It is a conscious decision (and a very difficult one at times) for me to go into this with only positive thoughts, but I’m trying.  Lord knows I am trying. 

The saying "ignorance is bliss" has taken on a whole new meaning for me because it really IS.  This isn’t my first time down this road.  There are plenty of things I wish I didn’t remember about those other 2 surgeries, but unfortunately I can’t un-remember them (and yes, I know that’s not a word!)  Going into this blind would be better I think than to go into it knowing what I know and what I experienced. 

So with that, I am officially surrendering all of this to God. I give it all to Him. I have taken all that I can at this point and am now ready and willing to move forward and do this.  I'm at the point where my mind, body and spirit simply cannot hold another single thought or "what if" or fear/anxiety.  As my Mom reminded me of something she heard in church referring to giving all of your fears and burdens over to God:  "I can't - You can - You promised."  And so with that, I am reminded of the Serenity Prayer.  The abbreviated version is the one most are familiar with but here is the original version:



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.


Saturday, January 21, 2012

Life is "Brutiful"....

I heard something on the radio (89.5) yesterday – it was a story about a woman who said that life was “brutiful” - - - brutal and beautiful - - - hence the term, “brutiful.”  She goes on to say that life is both brutal and beautiful and that we need to experience both and that we get through the brutal and experience the beautiful every day, week, month and year.  I loved it.  Brutiful – it’s so true!

 It’s snowed, finally!  We woke up to the beautiful scenery of a few inches of snow this morning and by the reactions of my two children, you would have thought Santa himself had just made a surprise visit overnight!  I wish we could all see life through the eyes of a child (and that includes snow).  Their eyes filled with wonderment, delight and just sheer joy at the sight of seeing how the snow blanketed the yard, trees and cars.  It was just enough snow to get them “suited up” in their big bulky snowsuits (much like that worn by the younger brother of Ralphie in “A Christmas Story!”)  They went outside with Daddy to help him clear off the cars, shovel the driveway and make snow angels…ok, well they didn’t help my husband much but they did make lots and lots of snow angels.  At one point I was standing on the porch watching when my son yelled, “Hey look Mommy!  Look at my snow angels!”  And in that instant, as I watched Matthew and Katie playing together in snow, I thought to myself, “Yes, would you just LOOK at my two beautiful little snow angels.  Thank you God for my snow angels!”

 So, today marks 3 days to go…three, as in 1-2-3.  It’s definitely hitting me now.  That is the brutal reality of it sitting right there in front of me and I can’t ignore it anymore.  It’s like when kids play hide-n-seek and yell “Ready or not, here I come!”  That’s sorta how I feel.  The orthotist dropped off my back brace this afternoon and I’ll need to bring it with me to the hospital on Tuesday.  It’s looovelyyyy (haha).  I started packing for “the trip” – not to Bermuda or Barbados…oh I wish…this trip isn’t one many would ever want to sign up for.  From what I hear, the view stinks, the food is awful and there’s no happy hour!  So how much underwear and socks do I really need when I’ll be in the hospital for 2+ weeks?  Do I bring a hairdryer?  My phone and iPad for sure – Santa got us an iPad so that Mommy could see the kids on FaceTime while in the hospital.  I love Santa for thinking of that!  And the phone has all my music, which I love so much and can’t live without!?  Definitely need to bring a few framed photos of me and the kids.  That will be the hardest part – not seeing the kids every day.  I worry how they’ll handle this – but kids are so resilient and with so many friends and family members offering their support, I know they’ll be ok.  It may take a while, but we’ll get “there.”  The other day my son was asking questions about my back surgeries and on our way home from daycare he said, “So Mommy, they’re gonna take out your bad bones and put new ones in but they just have to remember to not touch the sides, like in Operation (the game!)”  As I chuckled under my breath but at the same time wiped a tear away, I said “Yep Matt, something like that!”  Another “brutiful” moment…