Scoli Club United
I created a Facebook community page called, "Scoli Club United". It's a page where people from all over the world can come together and share their experiences with Scoliosis.
When I was diagnosed with Scoliosis at 12 years old, there was hardly any information or support groups out there. Everything was a take it as it comes experience. It would have been phenomenal is there was something out there to help educate myself and my family, but since there was not, I thought I could lend a helping hand. Educating and showing people with Scoliosis that they are not alone and helping with the self esteem issues that arise, especially since we all know that our society can be cruel. I was on the front lines battling with bullying and body self image problems.
This is where not only the Facebook community page, "Scoli Club United" comes in, but this personal blog of mine that you are currently reading. If I can make one person out there realize that they are beautiful, twisted and all, then I feel I have helped. I felt very alone growing up and my goal is to make the world see that yes, only 2-3% of our population has this condition but it deserves recognition. Just because you see someone who has a hump on their back, can not stand straight, complains about back pain, or you can not see it at all because you were aesthetically lucky growing up until you bend over and cruel peers ridicule you, please know that you are special.
Go to Scoli Club United Facebook page and "Like" it and share your experiences. Whether you or someone you know has Scoliosis, please share your stories, pictures, writings, or artwork.
One day there will be better research, better education, and better treatment options for Scoliosis. We are survivors.
August 31st, 2013
I had a dream that I was walking alone through a forest full of beautiful large pine trees. I could tell that it was late autumn by the slight chill in the air. I could hear the squirrels digging for acorns, see the breath of a fawn while it enjoyed it's meal of forage, and I could hear my own heart beating. None of the animals scatter as they see me approach, like as if I am one of them.
I soon realize that I am no where familiar. I continue to walk ahead, but a foggy mist sets in. Softly out in the distance, I can hear a small voice. I speed my walking to see where it is. Then I realize that it is my son calling for me. I begin running calling out his name, but all he says is, "Mama! Mama! Where are you?" I keep running but never reach him. Then I wake.
My heart is heavy....I am fearful...but I have to be strong because no one else can do it for me.
To be so strong that nothing
can disturb your peace of mind.
To talk health, happiness, and prosperity
to every person you meet.
To make all your friends feel
that there is something in them
To look at the sunny side of everything
and make your optimism come true.
To think only the best, to work only for the best,
and to expect only the best.
To be just as enthusiastic about the success of others
as you are about your own.
To forget the mistakes of the past
and press on to the greater achievements of the future.
To wear a cheerful countenance at all times
and give every living creature you meet a smile.
To give so much time to the improvement of yourself
that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear,
and too happy to permit the presence of trouble.
To think well of yourself and to proclaim this fact to the world,
not in loud words but great deeds.
To live in faith that the whole world is on your side
so long as you are true to the best that is in you.
― Christian D. Larson
August 23rd, 2013
It caught up to me at work. The pain finally caught up to me to where physically and mentally I could not function. Yesterday was yet another uber busy day at work and I was assisting in a 4.5 hour sedation in an ergonomically odd position the entire time. By the time hour 3 rolled around, I was in awful pain. I was twisted in such a way at one point, that I actually could not breathe well and I began to get dizzy. I felt like was going to pass out, but I had to keep assisting.
At the end of the sedation, I was finally able to get out of the room to get some air. I could barely walk. Every step I took felt like the friction of a bunch of pebbles being ground into the pavement. I had to sneak out through the back of the building because I was hurting so bad. I cried to myself and when I got situated enough to go back inside, no one noticed. No one cared I think.
I had more patients to take and as the day went on, my body protested. My right arm became extremely weak. I kept dropping things and could not even open anything. But I need a paycheck so on and on I went.
When I got in my car I cried, when I got home I cried, and took a long hot shower. I laid flat on my back for an hour. I went to bed early as well. Today, it still hurts but not as bad. My back is sore all over and hurts on my right thoracic when I take a deep breath. Hopefully soon this pain will be a thing of the past.
5 weeks and counting....
Today is my son's first day of Kindergarten. I'm pretty sure that I was more nervous about him starting than he was. Walking with him to his classroom was unnerving and exciting. He looked like a deer in headlights when he saw all the other children. He ended up crying when it was time for me to leave and it broke my heart. My little baby boy is growing up. And yes, when I got to my car, I cried.
Today is a landmark for my family. Not only our son is a big man, but today marks an event on our schedule that brings my Spinal Fusion surgery closer. Today was the last of everything we had to take care of before all the preparations and pre-op testing began. So of course, I'm freaking out.
It is amazing how time gets away from us. One day you look around and your child was just born (I can remember it so vividly) and then poof.......he's 5 years old and your leaving him alone with a teacher that you can only hope will take care of him the way you do. Sigh....
I am dreading being wheeled into that operatory. I am dreading kissing my child goodnight the night before. I am dreading the pain afterwards. I guess I am more negative right now because now the clock is ticking louder. I keep trying to see the silver lining, but right now it's not as vibrant as it needs to be.
August 9th, 2013
Today, it hurt to get out of bed. It hurt to walk, sit, or bend. It feels like when you have a really bad case of the flu (because the flu makes your body hurt everywhere) that attacks your back, hips, and shoulders. Just add some stabbing pains with the feeling of fire going through your shoulder and it would be complete.
I hope the surgery stops the pain......
August 7th, 2013
I know it's been a while since I posted anything but it has been a very hectic few days. My birthday is today, my son's birthday party is this Saturday, and I have been getting everything at my job organized before my departure. Ugh...... I'm slightly stressing. I also haven't been doing too great pain level wise, but I keep trucking along. I'm still just taking Tylenol for any pain that is unbearable. So, all the time in other words!
It being my 29th Birthday has got my mind's gears turning. I'm thinking about the Spinal Fusion. I'm nervous, scared, and ready to get it over with. I find myself thinking about all the risks involved and of course, if something bad happens. It's hard not to think about the negative things even though I have been trying to be positive. Regardless of what I'm feeling, the surgery is happening.
Below is a list of risks that I found that may come along with Spinal Fusion surgery from www.spineuniverse.com that is useful to me:
Risks with Surgery
As with any operation, there are risks involved with scoliosis surgery. Your surgeon will discuss potential risks with you before asking you to sign a surgical consent form. Possible complications include, but are not limited to:
July 26th, 2013
I had my MRI today and I managed to keep myself sane. The reason I say this is because I was in this claustrophobic machine for 50 minutes. I could not move for 50 minutes. That is not easy to do. Luckily, I don't mind small spaces but, I can see why some people need a sedative beforehand.
Screech, BAM, and ping is all I heard the entire time. And let me tell you, ear plugs barely help. What's crazier is my lower back is hurting horribly now. It has to be from laying on that hard board with my knees propped up. Ugh, at least it's over. On to the next one.....
July 25th, 2013
My mind is set on overdrive
The clock is laughing in my face
A crooked spine
My sense's dulled
Passed the point of delirium
On my own
Here we go
- Green Day ( Brain Stew )
Lost in Wonderland and my name is Alice. Or so it seems because apparently I have been bonkers lately. Oh me, oh my, I'm waiting for a very important date. Only I can't be in a world chasing a white rabbit down a hole. My world is a Spinal Fusion clock tick tick ticking way too fast.
It has been brought to my attention that while I am trucking through the days at work or being home with my family, I have been oblivious to the fact that I have gone mad. Everyone says I'm still nice, funny, and thoughtful but, it seem as though I'm always somewhere else. Like I'm here but not really. I have been told that I am being distant. Trust me, I do not mean to be. My mind is on a vacation, I guess. The last thing I want is to make anyone feel unwanted.
All the stuff I have to get situated at work before my surgery, all my doctor appointments coming up, being a mother, and going into a surgery not knowing if I'll even have a job afterwards is really weighing heavy.
I will try to be knowledgeable when my mind wants to check out of Hotel Tiffany. In the mean time, please be patient with me.
"But it's no use going back to yesterday, because I was a different person then." - Alice in Wonderland
“It is health that is the real wealth and not pieces of gold and silver.“ -Mahatma Gandhi.
“Yoga is the fountain of youth. You’re only as young as your spine is flexible.”- Bob Harper.
“Accepting means you allow yourself to feel whatever it is you are feeling at that moment. It is part of the isness of the Now. You can’t argue with what is. Well, you can, but if you do, you suffer.” - Eckhart Tolle
“Yoga does not remove us from the reality or responsibilities of everyday life but rather places our feet firmly and resolutely in the practical ground of experience. We don’t transcend our lives; we return to the life we left behind in the hopes of something better.” - Donna Farhi
"Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned."- Buddha
"I saw that." - Karma
July 18th, 2013
Pardon my dust....
A couple of weeks ago, I wasn't able to hold a book I was reading with my right hand. All of a sudden I dropped it. My thumb lost all strength. I kept trying to bend it but it would't do it all the way. The next morning, it felt weaker but worked better. Well, yesterday I was at my mother's house and the craziest thing happened... I wasn't able to use my right arm very well. Everything was very heavy, I was shaky, and I could not open anything. That is the first time my arm has done that. It began when I was driving to her house.
All day long my right arm hurt and was numb at the same time. From my shoulder to the palm of my hand where my thumb meets it. I could not open a juice bottle. I was also attempting to cut a pork chop at dinner and I couldn't. I honestly could not grip my right hand around the knife and apply pressure/weight to cut it up! My mother had to cut my food up for me. I am going to be 29 years old in August and my mother had to cut my food up for me to eat. Do you have any idea what that feels like? How scary that is? My mom didn't know what to think. It scared her. It scared me.
It must be a pinched nerve from the contorting and twisting that my spine has done. With my spine pulling more to the right, it was just a matter of time before more numbness and other pains began. But temporary atrophy/pain in my dominant arm? If it gets more frequent, it will effect my life in every imaginable way. I'm to young to feel this way. Like I said on my homepage of this site, "Your spine is like an aging dock......Two choices then become present: either leave it alone and eventually it will rot away or rebuild". My remodeling date is set for October 3rd.
The Surgical Coordinator for my Orthopedic surgeon emailed me all the dates and times of the tests that are required before my surgery. Besides the MRI appointment that I made for 07/26/13, there are 5 others. Here's the list:
We're in countdown mode......
Surrender and Let Go
To be honest with you, I never thought Yoga would be able to relax me or be beneficial to my health. With this Spinal Fusion surgery coming up though, it has me thinking about my life. The tension and negativity that I have carried throughout my life not only made the muscles in my back tight and hurt more, my mind was hardly ever clear. Let me tell you, I have only been doing yoga for a couple of weeks and I can already feel a difference in my muscles when I do the poses. My attitude is changing as well. I have noticed that I let negativity just roll off me, unlike in the past. I got to say....I am liking it. I can see myself doing this for possibly my whole life.
Yoga has positive effects on your body's systems too. Muscles, skeletal system, circulation, glands, immune system, nervous system, and mind. It teaches you to stay grounded, to breathe, and relax. I am mad at myself for not trying Yoga sooner. It doesn't hurt my back; it stretches it really well.
I am still a newbie but hopefully one day I'll be a pro. I really enjoy Yoga and would recommend to to anyone.
College Drop Out...Again....
You know the song from Grease where Frenchy sings about being a Beauty School drop out? Well, that tune is stuck in my head like a broken record. The only difference, I dropped out of college. I had too. I went to the school and the Advisers suggested that it would be best not chance failing any classes even though I was going to take them online. One of my classes' tests would be at the college 3 times that semester but, my surgery would be hitting at mid-term time. Bad combination. Especially when you can't walk that great.
So, I guess that means I'll have to try again for the Spring 2014 semester. It's only taken me a decade to enroll and all.......
I have been researching ways to make my healing process after the surgery not so painful and long. What I keep finding is that a healthy diet and exercise will make your muscles heal and gain my strength back. It will also give the energy to want to get up and moving around. I even got a blender to blend fruits and vegetables so I can make sure I get the nutrients I need after the Spinal Fusion surgery.
Here is what I have discovered:
Eat the right foods and drink enough fluids to help you heal and regain strength. Eat foods high in protein, iron and calcium such as peanut butter, eggs, meat, cheese, milk, yogurt and green leafy vegetables. Eat high fiber foods and drink plenty of fluids to help prevent constipation.
- High fiber foods include whole-grain cereals, bread, fruits and raw vegetables. Sometimes eating 5 or 6 small meals a day will keep you from feeling “too full” after eating.
- Drink six 8 ounce glasses of water a day.
I have already begun eating differently to give my body a head start. Next, checking out Yoga for Scoliosis.
I have been trying to figure out ways to wash my hair after my surgery. Seems like so something so simple to worry about. But really, how am I going to when I have an incision from top to bottom? So far, I have thought about going to a salon. Easiest choice but, my incision will be to high and I won't be able to lay my head back on the sink. Then there is that contraption that you attach to a facet and it becomes a shower head. I would have to lay over a chair, stomach down, and have someone wash my hair for me. Finally, dry shampoo. It would be okay for a couple of days but a week or two...I don't know about that. I've even heard to put cornstarch or baking soda in your hair to soak up the oil. Hey, I might have to give it a try.
I am probably going to stink! LOL
I set the appointment for the MRI that the doctor needed to perform my Spinal Fusion surgery. He requested the cervical, thoracic, and lumbar (basically my entire back) to be the main focus in the image. The doctor wants me to bend over like I am reaching for something in this MRI. Different way of doing it.... maybe it allows the doctor to see where all my nerves run and how my discs lay. Just a hypothesis...
The Date Is Set
Well, it's official. The date of my Spinal Fusion surgery is October 3, 2013.
My work knows. Everyone knows. Great. People are asking questions especially if they have no idea what Scoliosis is. You know how sometimes you would just like to forget about it and hopefully it will go away well, this is not going away. Everyday I am reminded that I am leaving my job. I am having to prepare and have things in order.
My boyfriend and father of our child will be taking over everything in the household for at least 6 weeks. Depends on how I heal. He keeps reminding me that he's here for the long haul and he's willing to take care of me to the fullest. I love him so much.
My mother, of course, is being strong for me but I know that when I'm not around, her fears haunt her. She's my rock. We're planning on me staying at her house for at least the first 1-2 weeks. It's the most crucial & painful. She will insist that I don't lay around and make sure I'm positive. Then I will go back to my home and just try to get stronger everyday. I won' t get to be around my son a lot because he is very active and jumpy. He loves to jump and play. We are afraid he might hurt me. But, maybe he will surprise us.
3 months and counting......