Supportive Scoliosis Sites

I have found many a night or heck let's be honest early morning, afternoon and or/evening, most of some days, etc where I feel completely alone and like there is no one who understands what I am going through or can relate to my health concerns. You, WE are not alone. There are so many websites out there with support groups, blogs, journals and forums for people going through the same thing as us. Here are a few:

http://www.scoliosisnutty.com/

The above site was originally a blog started by a woman in the UK who has undergone Scoliosis surgery for a severe curvature and created this wonderful site with information, support links, blogs, items/suggestions for pain relief/management, as well as member stories and profiles linking thousands of Scoliosis and back pain patients all around the world!

http://celebrityscoliosis.com/

If you ever think you are the only one with Scoliosis and feel like a monster because your clothes don't fit properly or you notice your physical differences in the mirror each morning, check out the above site. There are so many celebrities and athletes, including Olympians, who have Scoliosis as well. Vanessa Williams and Rebecca Romijn both have Scoliosis. They are generally considered two of the most beautiful people in the public eye and no one would ever guess they live with Scoliosis every day. Rebecca Romijn was actually my idol and muse when beginning Pilates for Scoliosis. She is a large supporter of both.

http://www.dailystrength.org/home

This website is amazing it links a wide variety of people from all over the world with many different ailments, diseases, and medical issues. They are SO supportive and people will start reaching out to you almost instantly after you create a profile.

http://www.scoliosisblogs.com/

The above site highlights different blogs specifically about Scoliosis from people all over the world.

http://www.scoliosis.org/forum/

The above site is another forum that you have to join to add comments to and join discussions. There are an endless number of Scoliosis conversations, threads, and topics being discussed. Almost anything you think you could deal with can be found on this website. If you have Scoliosis, I strongly suggest joining.

Again, networking is key. It helps keep your spirits up and remind you that other people have, are, and will continue to face the same problems. Reach out, ask questions, give feedback and you will be amazed at how much it can help you face your Scoliosis or medical issues.

Hopefully you can find some support, encouragement, and enlightenment if you are searching for it. I know when I am it is always helpful to me.

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