Better Than I Used To Be

"I ain't as good as I'm gonna get, but I'm better than I used to be." Kevin took us and our cousins to to the Brothers of the Sun Concert on June 2 and I cried a little when Tim sang that and balled like a baby when he played, "Live Like You Were Dying." It just hit closer to home than it ever has. Very glad it had gotten dark.  Inspirational.

Charlie & Mollica and Kevin & I

Kev & I at Brothers of the Sun Concert. First REAL outing after surgery. Cast and all (removed for photo), you know you love Tim and Kenny if you're casting it up to the third level only 4 months post-operative. It killed me and put me out of commission for about 4 days but I LOVED it!

I have reached 5 months post operative from my multilevel thoracolumbar fusion with instrumentation and osteotomies. A lot has happened in the last 3 weeks. My life has changed in ways I never could have fathomed. I have always been upfront about the fact that I never asked or more truthfully allowed my spine surgeon to explain in full detail what he was going to do during my procedure. I do not handle graphic images (or thoughts) of wounds or surgical images, especially when I am the patient. Grey's Anatomy is fake, and yes I wince during the bloody scenes. So obviously picturing what was going to happen to me under anesthesia with my eyes taped shut, completely naked while being hacked up in front of a room full of people slicing, dicing, and digging strange instruments into my back would send me running for the hills. I would have turned it over and over in my mind until I talked myself out of it or found another excuse to postpone...AGAIN. Instead I simply ripped off that band-aid and jumped in head first.

During physical therapy last week, at Moreno Spine & Scoliosis, I requested copies of all my medical records. After reading them I now understand why medical terminology exists and most doctors generally sound as if they are speaking a different language. If instead of saying, "multilevel thoracolumbar fusion with instrumentation and osteotomies" they said cutting your back from between your shoulder blades almost to your bottom and shredding open all your muscles, tearing the ligaments from your bone, chiseling away at the bone and then cutting and reshaping them to fit into a straighter position followed up by drilling holes into your bones and then placing screws and wires and finally giant metal rods to hold all that in place and covering it with some bone marrow they "harvested" is the word they actually use from your spine, a dead person, and a little artificially created in a lab, people would take off screaming.

I made the LARGE mistake of youtubing some videos of spinal surgery and googled "facetectomy" last night. This is not recommended, personally, for people about to undergo surgery. Actually I don't think anyone should watch it, it's literally the most graphic thing I've ever seen. It's simply unnecessary torture that makes you nervous for no reason. And if you're like me start hyperventilating and making noises I could never imitate. It literally looks like something from a sci-fi film, worse because you know it's real. Knowing that happened to me is SO strange.

I won't lie, I am still in pain all day every day. I can feel the metal in my back, it's indescribable. I do feel better than I did in the beginning, even from a couple months ago as well. Sitting up is just not working for me. I was fused from my T4 to my L4.That's a lot of your spine for people unfamiliar with Scoli language. He saved the last disc in my Lumbar spine, your lower back. Now all the instrumentation and extra weight is pushing on that bulging and slightly degenerative disc AND pressing on some nerve roots and causing occasional numbness and loss of feeling in my left leg along with almost constant sharp burning pain. This is an improvement from the first couple months though. I've been in pain so long now it's almost hard to gauge it.

Was it all worth it? It had to be. My curvature was progressive, degenerative, and causing me a lot of pain and not far down the road more serious health complications had been ignored for 13 years. I will heal. I will not be disabled forever. That simply isn't an option. I was not made to be unproductive. I also am entirely too strong willed and stubborn to allow this to beat me. I'm not going to say I don't break down, get weak and emotionally drained and cry for two hours when I can't sleep in EVER because I am always in pain and never comfortable and can't go to my cousin's engagement party, etc. This is NOT easy. This is by far the single most difficult thing I will ever go through. Unless I require brain surgery and let's get real no one can be that unlucky, not even me. Everything in my life after this is going to be a cake walk. I have completely transformed inside and out. My entire perspective on life has changed forever.

I can walk a little longer, I am free of that terrible cast 75% of the time, I force myself to sit in the living room a couple hours a day, but at 9 pm I am spent. Even reclining at a 45 degree angle in my comfortable king size bed with the Rays neck pillow Kevin got me is killing me. It's ice time.

I have to vent, but I also have to say to anyone with a severe progressive spinal curvature and pain considering surgery the younger the better. I am glad it's done. I am already 5 months out of the woods. Surgery techniques and recovery 10-15 years ago to now has completely changed. ALWAYS get a second and third opinion and research the heck out of your surgeon. Board certified, no malpractice or settlements and if you don't feel comfortable with them and their "bedside manner" keep looking. I did, and it made all the difference.

Parting thought for this evening, ‘Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you.” ~ Mary Tyler Moore

Always With Karma,

Amanda

8 Weeks Post Op

So it has almost been officially 8 weeks since my 13 disc spinal fusion. The mental/emotional aspect is just as difficult if not more than the physical pain. Spending the majority of my time alone in a bedroom working from bed (which is NOT easy when you have as much paperwork as I do) and watching repeats of 90210, Sex and the City, other shows I've seen a thousand times and DIY, HGTV, Turner Classic Movies, etc is extremely boring and monotonous. Indescribably.

It is very difficult to work when I am in so much pain, and it's practically impossible to work on pain medication. My physical therapist says I am trying to wean myself off the medication too quickly. She says if I allow my body to become to stressed and fatigued while in pain that I am only doing damage to my body by slowing my healing process. I HATE pain medication. It makes me nauseous, dizzy, light headed, gives me a feeling of vertigo, confused, forgetful, not to mention the extreme nausea and vomiting like I experienced on Tuesday. I spent the early morning hours on Tuesday sitting straight up and vomiting into a trash can in our bathroom. The pain, stress, and straining that caused my back is unexplainable. I can't take it if I have to drive so I have to grin and bear it while suffering immensely. Sadly, I think there is one sick person out there who actually gains pleasure by this. Isn't that sad?

So I will be at 2 months tomorrow and my scar looks AMAZING! My back hurts all day every day. It's at the point where it's uncomfortable rather than painful sometimes which is much easier to deal with. I have begun doing actual exercises in physical therapy as opposed to breathing exercises and her doing very minimal stretching with me. I actually did some calf raises, sliding with my back against the wall down into a sitting position (hold for 5-10 seconds), and then a bunch of exercises on the table. I will upload the exercises my physical therapist tailored to fit my body exactly where it is in the healing process and what exactly it needs. I am very lucky to have found Moreno Spine & Scoliosis. Anytime I have questions, pain, concerns, need advice, they respond to me immediately and put me at ease. They are the best surgeons office I have ever personally dealt with, and I've been through about 7. Not counting Shriners' Hospital which is an amazing place that I can say only wonderful positive things about.

As difficult as everything is with my recovery and day to day life the terrible dark looming cloud of this court battle will be over soon, I am sure of it. Truth, honesty, and unselfish good intentions always prevail in the end. I just have to believe that. It might be taking longer than we hoped, but it will all come to the surface and be seen for what it really is in the end. Nothing done with negative, selfish, deluded intentions perpetuated by feelings of hatred, jealousy and bitterness can ever bring anything positive to fruition. I feel that is true deep within my soul. Kevin and I have never done anything intentionally or unintentionally that would hurt or harm Dominic or his relationship with his mother or his new step-father. Even after all of this we still never would, and that is why I know everything is going to be fine and we are going to get our boy back.

I am focusing on the positive, the future, and things to come.My healing process that is for the most part going well and moving forward. Kevin's business is bit by bit getting off the ground. I am really excited about seeing him so focused and driven with something again. He is SO close to finishing his degree which could not make me any more proud! He deserves more than anything to walk across a stage and get his bachelor's degree from the university he has always cherished and admired. I am so happy to have been a part of his journey leading up to this great accomplishment and milestone in our lives.

Through everything that he has been through, SO many trials and struggles with his ex and fighting to stay in their son's life and going between jobs and school to balance what is right for him but always doing what helps his family first and in place of his desires. That is only one of the countless reasons why I am madly in love with him and know he is my soulmate. After all of that, and especially what she has put us all and the child through Kevin really deserves something positive for himself that he accomplished without help from anyone else (okay, so I've helped with a paper or two-only subjects he knows I'm interested in because I'm a super nerd) that he put off and sacrificed for his child, ex-wife, and even myself on occasion.

I have tried VERY hard to do whatever it takes financially, physically, and with Dominic along with in our home so that Kevin can realize his dreams as well. I feel our relationship is fairly even and that we both allow ourselves and one another the time we want and deserve to do our own thing and work towards our future in our careers and family. I am totally off topic, but going through this surgery has changed me forever and made me look at the world in an entirely different way. Things that I used to care so much about and have a fit over seem so trivial and petty. Little moments like watching the sunset while we're driving Dom from school or seeing the sunrise over the water with the airport (his favorite) in the distance burn a small memory into my brain that I know I will cherish forever. Those are the things I have to try to focus on. And work of course, work work work. Reports reports reports. I live for my crackberry, quickbooks, and excel. Without them, I would be lost.  

Enough of my venting. Physically, I am doing pretty well. I am on a good path. Starting physical therapy earlier than the vast majority of patients. Hopefully I am not pushing myself too much too soon, which more thank likely I am because I have a tendency to do that.

My inspirational quote  today. "The way I see it, if you want the rainbow you've gotta put up with the rain." - Dolly Parton

Always With Karma,

Amanda

My V-Neck Is Straight

Even though I am going into week six of basic bed rest all day in our bedroom, which has begun to feel like a prison, I am getting markedly stronger each day. I still get frustrated and may start to cry a little because it is very frustrating and difficult to be in pain all day every day, into the night non stop and barely be able to sleep. For the most part though, 80% of the time people can barely tell I even had surgery. Unless of course I am wearing my brace and using my walker. Or doing my funny hobble walk.

From the evening I woke up out of surgery until today, I am an entirely new woman. We went down to Clearwater Beach today. I could definitely use some sun from having three surgeries in a month, four blood transfusions and one platelet transfusion in a year and a month. We take a walk every day around our neighborhood which is shaped like a horseshoe, but it's gotten boring. We went and walked on the boardwalk running along Gulf Dr, cement for the walker there, and ended up walking a mile over an hour and 15 minutes! It was sunny and 80 but there was a cool gulf breeze that felt amazing.

Yes, we made this walk with my brace and walker. I must admit, I still look fabulous. Other than my Twilight looking skin tone. People were looking, at my brace and walker or maybe my hot boyfriend with his shirt off lol, and one woman even approached us and told us her daughter had to wear a brace in high school. We explained my story briefly and told her I am 5 weeks post-op and she said her family will pray and was very sweet. None of that bothers me in the slightest. Staring, wondering, questioning. I am proud of myself for finally having finished it. Healing and recovering as quickly as I am. Staying positive and only spending energy on things that will bring me success in life, happiness, love, within my circle of friends and family, etc. This life changing surgery has really changed my priorities and the way I look at so many things in this world. Mainly relationships. They are the single most important thing in this world. Other than personal happiness of ones self. 

On the plus side the couple times I have gotten out everyone is complementing me on how wonderful I look. "Supermodel" is the word that was used by more than one person lol! I am now 5'5 and around 115 pounds. Okay, I am probably closer to 110 but I was only 5'2 before! The amazing part is that I was petrified of losing all my muscle mass and even more weight, and luckily neither has happened. I have lost one pound and continue to gain more muscle. Most people post-op lose 10-15 pounds. Luckily, I have had to massively overcompensate for the total lack of use of my entire back. My arms, entire stomach, legs, and knees are taking the brunt of all of my weight. I was getting out of the shower a couple days ago and Kevin started poking my stomach and pointed out to me I have a pretty nice six pack. My biceps and shoulders are as nice as my goaled Sarah Jessica Parker (not at her current or creepiest of course, old school Sex and the City Carrie)! Even while laid up in bed and using a grabber to turn on my fan and light lol! It is very hard for me to sit still. I have broken the rules and pushed our small canister vacuum and wiped the bathroom counter, toilet, and sprayed out the shower and tub a couple times. I can push the shark steam mop but it causes intense electrical feeling shooting pains after about 10 minutes. When I stand for extended periods of time my lower  back begins to ache and burn like fire and I can feel the weight of all the metal. Then I look at or feel the bump and it freaks me out. Best to take it very slow. Let Kevin handle things. Just relax and work in bed. 

I have to share this because anyone considering a major spinal fusion for Scoliosis or multiple discs needs to know that the good vastly outweighs the bad. As long as you have researched your surgeon and they know what they are doing and you feel comfortable with them and their procedure. The finished product, IF you do everything you are ordered to by your surgeon, is amazing.

We took before surgery pictures and my surgeon wants to take afters and asked to show them to potential patients as a success story. Big pat on the shoulder for me. I'm the best at everything even when I'm not trying. That's not totally truthful. Pre-op I had gone into a crazed workout mode where I toned every inch of my body. I went into this and I kept saying things like, "I'll only be in the hospital 5 days, going to make a record!" (For the record Dr. Moreno said he thought I could get out of there in 5 days, we didn't anticipate the complications) Not! I was there almost 10 days and in the ICU almost 5 and neurological/brain trauma Critical Care the remainder. Can't win em all. I was up walking the very next day though, even with EXTREME distention and pain I walked further than any other patients did. 

The turning point of this entire thing happened a couple evenings ago. I went into the kitchen to put my glass in the sink and I could see my reflection in the kitchen window. I stood for a minute looking at myself and realized my shoulders are totally straight and the v-neck of my nightgown is laying in the middle of my chest. I haven't had that since I was a very little girl. My v-neck always pulled to the right and up a tiny bit because of the unevenness of my shoulders. My bras and bathing suits had to be constantly adjusted and never fit right. I had to get things altered it was so inconvenient and depressing.

I waddle shuffle hobble limp walked into the living room to tell Kevin. I looked at myself in the mirror above him and when I started to talk I began to cry. Tears of happiness from the sheer fact that I'm working my way down the other side of the mountain just started to pour out of my eyes. He jumped up and hugged me and got a little emotional too and told me how happy he was to see me really healing so quickly and on my way to being pain free. The relief and the reward of having my body made into what it was intended to be is just an astounding added bonus.  

Week to week I am having drastic improvements. It's easier for me to squat and kneel to get down to the ground. I can stay down longer. It's easier for me to get back up. I can bend forward about 4 inches now where before I couldn't even tilt my head down. I can reach quickly to the right and the left and before I could not really move my arms to either side or reach at all. I can stand almost completely straight up. I have sat in the living  room twice in the last couple days for more than 30 minutes! That is a big deal! We went to Sushi one evening. We went to the mall once to get my hair washed and blown out, some new underwear for my swollen Terminator lower back (we find out tomorrow if that goes away, lets cross our fingers!), and of course my own personal crack...Yankee Candle. I had to get a motorized wheelchair though. I still have to ride one at the grocery store as well. Three grocery store trips under my belt. Oh and of course the fun drive I have to put myself through to take Kevin through the drama his ex has drug everyone through. Plant City, Tampa frequently, and meeting the wicked witch Downtown. That's okay, there's nothing I wouldn't do for Kevin and his son.

I am able to stand in the shower for almost 15 minutes, but I still can't shave the outer-side of my legs. Kevin has to do that AND style my hair curly, which he did a phenomenal job of I must say. I'll post pictures of everything to make sense out of it.

I go see Dr. Moreno again tomorrow morning and we have a two page list of questions for him. I get the exact measurements for my new spine, pictures that will be posted, an assessment of my progress and pain, and the hopeful go ahead to begin physical therapy. I have cut my meds in half. I do not wake up in the evening to take pain meds. The morning is very difficult because of it, but I am getting stronger. I may have to gain 5-10 pounds to compensate for my new height, but that's okay because I AM TALLER NOW WOOOO!! Anyone in my position, or similar, understands.

I always said my growth was stunted. We didn't really realize until I finally was able to stand to hug Kevin in the kitchen and we stopped and he said, "Wow. I think you really are taller. You used to be down here." A couple inches shorter at the bottom of his chin. Now, I am able to kiss him without needing to tip-e-toe. We also judged it by standing next to Heidi and my Mom because we knew what that felt like. I can't wait to shop and buy new bras and bathing suits. My dresses look better, my nightgowns look better, everything.

The pain is finally noticeably lessening and I am beginning to feel a slight bit of relief. I have been working a lot more. Again, I couldn't be luckier to have such an amazing boyfriend and an equally understanding and supportive boss. The fact that my office is 4 miles from my house makes everything much easier. Emergencies and seeing my boss or his parents, the big bosses, at the last minute and Kevin picking up and dropping off deposits, accounts payable, leases and other paperwork for me weekly to enter from my home system my boss set up for me. When I was, and will be up and moving around again, showings were always very easy to plan because I was never more than 13 miles from any property or tenant at any time as long as I am at the office or my home. I am so lucky to have found this position and if not for this career I would not have been able to have my surgery as successfully with this surgeon at such a great hospital without a ridiculous unreasonable, and heck honestly un-rational cost to me.

He will never understand how grateful I am. I try to show him through working harder at all hours possible. I get him appropriate gifts during holidays. I tell him at least once every couple weeks thanks you and each time our health insurance premiums are due, I thank him again.

I am so glad to be really making improvements and starting to feel less robotic. I can't wait to see Dr. Moreno and get a real update on my progress and start a new physical therapy routine. He is my savior and hero. I know that sounds mushy and ridiculous, but he is the most amazing surgeon I have ever met. And I've met quite a few. Will update tomorrow with the hopefully good news and photos! Wish me luck! 

Inspirational thought of the evening, "Have faith in your own abilities, do not just wish for a thing, take action and get it." ~ C Pulsifer

Always With Karma,

Amanda