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

Scoliosis Journey & Pics - Week 15

Almost 5 months post-op. Finally getting to the point I am counting in months lol! I am only posting these pictures for people who are really considering surgery, know someone else who is/has, and my family and friends who genuinely want to know what it looks like. They said everyone loses 10-15 pounds after surgery. I had luckily managed to avoid weight loss up until the beginning of May and thought it wouldn't happen to me. I fell in our living room on our wood floors and it set me back a lot. It could have been worse. I am very lucky I didn't need another surgery or adjustment.

The pain is still pretty intense. It never stops. There is literally not a moment in the day that I am not in pain. I am SO uncomfortable regardless of how I sit, lay, recline, etc. I am feeling a significant improvement and I am getting stronger, it's just a slow process. I know that this was the right decision. Even though there are some moments when I wish I could just make it go away and go back to the way it was, I know that's unrealistic. I couldn't have continued to live in constant pain knowing it was only getting worse and that I was postponing the inevitable. I am approaching a half a year post operative and a lot has changed from the day I came home until now. Yes, I have torn many muscles. I have had three rounds of painful trigger point injections into my torn muscles. Physical therapy is exhausting and feels like something babies do in Gymboree, but I can almost brush my teeth without using my hand to hold myself up over the sink.   

Being a couple inches taller makes me look even thinner. You can see the instrumentation when you look at my back, but that will go away as I gain more weight and my muscles grow back. The pictures below this are from week 15 after surgery.

All things considered, I am very lucky. Listen to your surgeon and physical therapists advice, don't over-do it and vacuum, clean your bathroom, drive your kids to and from school, etc and exhaust and strain yourself because it only slows your healing process. Ice packs are your best friend. My boyfriend has been the most amazing nurse and friend I could have ever dreamed of. Neither of us realized how much I would be reliant upon him, and he has been my saving grace. With a good surgeon, a positive attitude, and the support of family, friends, and preferably someone with fusion experience it will make the process much easier.

The scar looks very good. The bumps are the instrumentation and bone because I lost 10 pounds in the last four weeks. That is very normal after spinal surgery, especially since I was pretty thin before.

The way I was standing makes my right shoulder blade and the side of my torso stick out a little but it is much straighter than this picture makes it look.

I was compensating a little due to pain. My shoulders are very even now.

Stego Spine

Long Recovery Is A Hard Road

I have reached week 11 of my recovery post-op from my 13 disc spinal reconstruction/fusion. That is almost 3 months. 3 months seems like a very long time. It has not gone by quickly. While I am working very hard at staying positive and overall have been really strong through the entire process, I am still human.

A long term recovery is a long and tough mountain to climb. This is the most difficult thing I have ever done. I have been, basically, trapped in my bedroom for the better part of 3 months and it's starting to get to me. I get up and do a slew of things I'm not supposed to like vacuum, dishes, laundry, cleaning the bathroom, walking/sitting/standing longer than 15 minutes. All of these things are causing me to slow my own healing process. Sitting still in your bed other than using the restroom and doing physical therapy is painfully difficult.

I go to the grocery store and unless we take my walker or are only getting literally one or two items I have to use one of the motorized wheelchairs. What's very aggravating is lazy overweight people use them rather than walking, which is what they need most, and destroy the back support! So I have to sit upright and after being in the store an hour plus my back is swollen full of fluid and killing me. Then, back to the bedroom.

So I decided to change my surroundings a little and pamper myself through some online shopping of sundresses and bedding. I decided that I needed and entirely new bed set because that is my main focal point the majority of each day. Currently we have a light blue sea shell design comforter on our king size bed, that Kevin picked out, and I have had enough of looking at it lol. So I ordered a lavender comforter to calm my surroundings with only very small embroidering on it and smoky blue and purple sheets and pillow cases. What a difference sheets can make.

I am not the type of person to lay in bed all day long. Don't get me wrong, I love a lazy weekend or rainy day in the normal busy hustle and bustle of life...but this is something completely different. The "stay-cation" has turned into something occasionally resembling I don't know house arrest or something and is beyond old!

Luckily, I have an amazing boyfriend who devotes a lot of his time to taking care of me and spending time with me every day somehow so I have relief. It almost makes me cry when I think about how lucky I am to have that. We have a friend that was in a motorcycle accident and is very lucky to be alive and was in a rehabilitation center for months, close to a year, and that would have been me! Kevin has basically saved my life twice now. We played life which was great. I haven't had the dexterity to work on any of my jewelry yet, but I think I am going to try soon. I can't wait to resume my normal activities. I want to clean and cook and work out and lounge on the couch go out with friends, dance, anything. I am an invalid trapped in my body, bed, and home. And it's the most difficult thing I've ever done.

Working is very difficult. It is still difficult to manage the pain, let alone my business. I have to speak very slowly and work at a snail's pace compared to how I would normally perform. Accounting is challenging to say the least. The pain is all consuming and frustrating and it is hard to hide sometimes. Sometimes I just can't answer the phone. But all in all I am doing a pretty darn good job of managing things, if I do say so myself. And I do.

All in all I look great. I am healing very well and my overall flexibility is very good for what I had done, according to my physical therapist. She is amazing. I may upload my rehab exercises just to show examples of what I am doing during my recovery. I still have a long path ahead of me, but I have come a long way.

I feel how much stronger I am, I haven't lost weight, my stomach, thigh, and arm muscles are not deteriorating the way most do and I feared they would. I didn't have any surgical complications. I had many other complications in the hospital, but in the grand scheme of things they were miniscule compared to what I went through. Now I have an almost perfectly straight spine without a hip that pops in and out of place, degenerative discs, bulging discs, arthritis, and pinched nerves that made me double over in pain out of nowhere, etc etc. I am extremely lucky to have a family that loves and checks on me constantly and an amazing boyfriend, and a sweet little boy, that help me do most of everything. Even shaving my legs and styling my hair. How many men can do that for their women?

In a couple months I will be doing markedly better, as I am now compared to the night I woke up from surgery. I think about what I felt like, and how I am improving every day, and hold onto that. The new and improved future and an entirely different outlook on life.This was something I had put off for almost 15 years. It simply couldn't wait any longer, and there was no better surgeon to perform this operation on me. As depressing, slow, and frustrating as this recovery process is, I know that when all is said and done I will be thrilled to have gotten this out of the way and be 80-90% pain free and cosmetically look different as well. No more altering clothes and tops because of my Scoliotic body. I consider myself very lucky that I am as far along as I am and that I didn't have any more severe complications and am on a STRAIGHT road to recovery and being done with Scoliosis pain. And I can't even see the scar on my back, so it's like it doesn't even exist.

Do the things you do because you choose to do them for your own personal growth and success, not so you will be seen in a certain light by others. `

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