Saturday, May 27, 2006

Of pain and music. . .this morning I remembered a CD and book set my sister had given me. The book and CD are a collaboration by a music therapist and composer to aid in the relief of chronic pain. I was in the midst of packing to move when I received the set and had not used it yet. This morning I remembered it and I came in to hear it first thing, since I FINALLY got my stereo set up yesterday. The music begins with some discordant and repetitious phrasing interspersed which is supposed to represent and reflect your pain as you sit relaxed in a comfortable chair. The second segment involves more calming music with a voiceover gently invoking visual imagery. Maybe I was not able to suspend my own thoughts enough for this to ease my discomfort. I still felt the discomfort in my neck and back but I suppose I was more relaxed, because I nearly did fall back to sleep.

I wanted to try this CD because I noticed something important and probably not too surprising yesterday. As I sat here most of the day doing my marketing promotions, I listened to all my favorite music--Stevie Ray Vaughn, Neil Young,U2,Indigo Girls, Shawn Colvin, Joni Mitchell and others--I suddenly realized I wasn't in pain at all. No pain, nada, zero!

Sure enough, at the end of this book, which my sister probably paid a small fortune for, there is a section advising you to listen to YOUR favorite music. Put on something you can sing along with, grab a big hunk of chocolate and feel the endorphins! And save your money.

Hope everyone has a beautiful Memorial Day weekend!

Thursday, May 25, 2006

Good morning, kids! Here I sit with my coffee, contemplating how I've already NOT been faithful to my brand new blog. Remember how I was so proud I could finally get in and out of the bathtub after all this time? Welllll. ...apparently in the process of trying to find a decent position in that sucker, I strained something. So for the past couple of days I had a humongous ache from the middle of my back all the way around my ribcage and wasn't able to sit here much.

Which brings to mind the question: what do we people with back problems do when our occupation involves sitting all day? If we remember to stretch and exercise (if you're at home like me and have the schedule flexibility to do so) it's fine. But what if you're at work? I ran across a great little flip-through book yesterday called "Exerchair: The Exercise While You Sit in Your Chair Program." The book was sent by my parents' former neighbor Doug, and was written by his daughter Judi Sarkisian,Ph.D., illustrated by Paul Brewer. No they're NOT paying me to share this with you, heh heh. Anyway, I've been trying out the exercises as I sit here. These cover the body from head to toe, work well on maintaining your flexibility, and maybe just MAYBE you can burn a couple calories as well. For more on this book, there is a website listed on the back cover:

You notice I mention burning calories. I'm ashamed to admit I have gained 30. . .count 'em. . 30 pounds since my surgery. I was so jazzed because after the operation I had lost 12 pounds. Which was just right for me. Now I've come to live with my elderly parents and they have the dreaded ICE CREAM always in their refrigerator. Guess who LOVES ice cream? I was dumb enough to step on the scale the other day and, although I knew I had to drop some poundage cuz I couldn't button my jeans, I was freakin' SHOCKED to see how much I weighed. I'm surprised I could see my own feet. I know that gaining this much weight will only make my back worse, so since I discovered that 30 pounds I have been trying to lay off the ice cream.

I am off for a long, long, brisk, brisk walk. All of you take care of yourselves! And do not, I repeat, do NOT gain 30 pounds!

Luck and love.

Monday, May 22, 2006

I decided to create this site as a sharing point for those of us suffering from scoliosis. I am a 55 year old woman who did not have my scoliosis addressed seriously for many years. Back "in the day" there was no scoliosis screening in the schools and there were many of us whose scoliosis went unnoticed. In my case, I first noticed my spine deformation when I was about 15. I didn't know what was wrong, but I had a horrible body image because all I knew was that my back was ugly! I didn't want to put on a clingy top or a bathing suit. I didn't want to say anything to my folks because I felt my mother would just yell at me for not standing up or sitting up straight. I was probably wrong about that, but that's what was in my head. I think this is a pretty common story from that time. I do know that back then once in awhile you would see a girl with a back brace on. So someone was watching those girls more closely. I know that back then if the surgical alternative was sought it was a much bigger deal. I only found out about it later in my reading, but kids had to spend six months following their operation in a bodycast and the surgery was much more likely to fail. Please write to us and share your stories if you had to go through scoliosis surgery in the early days. I bitch now, but I can imagine how you must have felt!

I did not go to the doctor for checkups when I was growing up. My scoliosis was never mentioned by a doctor until I was giving birth when I was 19 and I heard the doctor telling the medical students in the room about how to administer the spinal block in my case. He had never mentioned anything about it the whole time I was seeing him during my pregnancy!

My son was about 12 when we first noticed his scoliosis. His doctor suggested physical therapy for him, but he did end up needing to have surgery. It was first scheduled when he was 17 but due to the surgeon rescheduling a couple of times he didn't get the surgery till after he graduated high school at 18. I felt so badly for him! He had gotten sick from the morphine in the hospital, so didn't take pain pills during his recovery. Ouch! Unlike myself, at the point when Devin had his surgery he had already started experiencing pain in his back. When we were told that his organs would end up being restricted without the surgery, he made the decision to go ahead and do it. He was so brave! After his surgery, he volunteered for a program where his surgeon could refer people to him to talk to about the process and what he went through. I was really proud of him for taking part in that. So kids and parents, if you are facing this surgery, ask your doctor if they have such a program. There are also a lot of links on the net now, and I'll post those on my blog for you.

My own back didn't start causing me pain until I was in my thirties. I developed severe degenerative disk disease and incredible pain and spasms. I went to several local doctors and tried all kinds of things--physical therapy, all kinds of pills,shoe lifts. There didn't seem to be any relief. No one seemed to want to refer me to a surgeon and I felt totally hopeless. I spent a lot of time crying, a lot of time lying in the bathtub trying to soak the pain away. Then suddenly at work a few years ago, I started experiencing bladder problems. I went to all kinds of specialists, urologists, gynecologists, everyone I could think of, but nobody seemed to be able to diagnose my problem, let alone solve it. Then one day I was researching scoliosis on the net, and I discovered that severe scoliosis could cause bladder problems. I went to my gp and told him what I suspected. He referred me to an orthopedic surgeon. Finally I began seeing some light at the end of the tunnel! I will say that neither doctor ever diagnosed that my bladder problem had anything to do with my scoliosis. I'll also say that I chose to have surgery for my scoliosis and I no longer have the bladder problem. So--if it's a coincidence, who cares, lol.

The surgery was a big, big deal! My scoliosis was at 75% so the muscles on one side of my back were totally knotted and overdeveloped and the muscles on the other side of my back were practically nonexistent. I also had a kyphosis at the bottom of my spine. So the surgeon spent 14 hours on one day putting two rods in and fusing my disks from the thoracic spine down. He spent five hours a couple of days later rebuilding and fusing my lower spine. My curve is now at 22% so there is a big difference! I could not sit for more than five minutes for the longest time! It took a month or so before I could sit for 15 minutes. I was able to walk to exercise, only the first 2 weeks with a walker. So standing and walking were okay, I just couldn't sit. It was very painful and unlike my brave son I wanted all the pain meds and muscle relaxants I could get! I didn't get off the pills for about six months, and that was of my own volition. They start to mess up the rest of your body and of course they begin to wear off faster and faster and the more you take, the more your body will get messed up. But I'm sorry. ..I have to scoff at the drug recovery places that call pain an "excuse" that people use to take drugs. Pain is real, you have to deal with it, not discount it. If you have alternatives, then teach them, but don't dismiss people's pain.

I am sitting here a year and a half later and am just now feeling that I did the right thing, after all. It takes a long time to recover from something like this at this age. Last night I finally was able to get in and out of the bathtub, with aid of a little handrail, and that was a major accomplishment! I always loved my tub baths and boy have I been missing those! Hard to lie back in the tub with a rigid spine, though. I couldn't find a good position! Anybody have suggestions for that?

For a long time I did not want to go anywhere and socialize because I had to worry about where I could sit. I still have somewhat the same problem, but to a lesser degree. I try to choose restaurants with booths and try to go places where I know my back will be well supported; or I swallow my pride and take a backrest or pillow. Then there's the balance problem! For years and years you're leaning one way and all of a sudden you're not! You find yourself falling over all the time, heh heh. I'm still pretty paranoid about tripping and falling.

Just the other day I noticed that the excruciating pain I used to have from the pressure on my crumbling disks.'s gone! Slowly but surely I notice new things I can do and then I'm glad I made this decision. It just takes patience. I do not wish to suggest that surgery is the only path to take in addressing scoliosis. I would consider it a last resort. My niece for example has been regularly seeing a chiropractor for hers and achieving great results.

This blog is not just for my griping, so please write to me and share your stories, experiences, and suggestions. I'll publish them here. I'll help anybody with any question anytime. Also, please explore the links I've placed below. They were very helpful to me before and after my surgery.

Luck and love to all of you!


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