Monday, June 6, 2016

Scoliosis Awareness + Question of the Month



I'm at Unicorn Bell with Dear Beta Readers and Critique Partners.


Scoliosis Awareness is not something people tend to think or talk about, but it is a condition that everyone should be aware of, especially if you have children. Teenagers (mostly girls) are susceptible to scoliosis (when the spine becomes shaped like an S) during their peak growing years. Every 6 months, parents should check their children’s backs. An easy way to view the spine is by having them bend at the waist. If you notice a curve, take them to see a doctor. Catching it early will allow you and the doctors to monitor it and treat it with simple, less evasive techniques.


Below is my experience with scoliosis. I’m sharing these details to shine light on this medical condition and what scoliosis survivors go through.

Pain –

Before and after I was diagnosed with scoliosis I was riddled with pain day and night. I had to take over-the-counter pain reliever a lot, and my mom would massage my back so I could go to sleep. The pain is what led to the discovery that I had scoliosis. After I complained about it enough, my mom took a look and could clearly see the curve of my spine.

Deformity –

I don’t know exactly when my spine started to get out-of-whack, how long it took to get to the point where I was in pain all the time, or when the sudden growth spurt happened that triggered it, but my entire body changed because of it. I never realized it, and no one close to me said anything, but the curve pushed my right hip out and lifted my left shoulder so I looked crooked.

Image from 43rdmedical.com

Treatment –

After countless x-rays and an MRI, the results came in that the lowest curve for my spine was at a 48-degree angle and was twisted around. (The higher curve between my shoulder blades wasn't as serious.) To relieve the pain and to stop my spine from twisting further, surgery was scheduled. Another treatment for less severe cases are back braces.

Spine surgery –

My doctors manipulated my spine back into place and set it with fusion and a titanium rod. During the surgery, my right lung collapsed. I needed a tube, placed through my side, to drain the fluid so I could breathe. I woke with an oxygen mask on, unaware that the surgery had actually taken place. I spent five days in the hospital in the worst pain I had ever experienced.

*To read a more in-depth, personal account of this check out my easy Woman of Steel.

Recovery –

I was confined to a hospital bed in my living room for a month until I had the strength to sit up past ten minutes. I had to practice walking further distances each day. For my showers, I had to sit on a stool and use a hand-held shower head. It took many months for me to get used to having limited movement in my back. For a year, I needed a pillow behind my back wherever I sat to cushion a part of my spine that sticks out and is sensitive to hard surfaces.


The Scar –

I have a foot-long scar that starts at my right hip and curves around my side to the middle of my back. It took me years to feel comfortable wearing a two-piece at the beach. Now I don’t care who sees it. It’s my battle scar. I’m a warrior!

Disability –

Many people (not all) who have this surgery end up suffering from pain as well as muscle spasms. Then there’s the limitations. Many people also can’t sit in one place or stand very long without experiencing pain. This makes working next to impossible, but trying to get disability is also a battle for scoliosis survivors.

Living with a Titanium Rod –

I can’t do a lot of things because of my rod, and if I try to do something fun, I suffer for days later. Even my body isn’t what it had been before my diagnosis. Although my shoulders and hips adjusted, my right hip is still shaped a bit odd and the top of my back has a slight curve to it. I’m also naturally thin and tall, so these things stand out more on my frame. And, yes, they make me insecure.

If you were to ask me today, knowing what I know now, if I would have the corrective surgery again, I honestly don’t know what I’d do. There are many pros and cons to it, at least for me, and it was the hardest thing I ever had to go through. But I suppose I would’ve done it anyway to save my spine and my body.

Although scoliosis isn’t life-threatening (usually), those of us who had it are definitely survivors. 


QUESTIONS: Do you know someone with scoliosis? Do you have a medical condition? Have you ever had surgery? Tell me about it.





QUESTION: Of all the places in the world that you haven’t yet been to, where would you like to go next?

My Answer: There are so many places I haven’t been to. Let me begin by telling you where I have been: a few places in Florida (St. Augustine, Fort Lauderdale, Key West, Daytona, Kissimmee, and Orlando), and Michigan for a visit to unexciting places. There. Now you’re all caught up to speed.

I’ve always wanted to go on a road trip across the United States, but number one on my list is Ireland. Always Ireland. It is my dream. I’m saving up for it…slowly.



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85 comments:

  1. I am always so sorry to hear about your health problems, and in a way can relate though my main disability (MS) is different.

    I never thought that I had scoliosis - maybe it was too mild to concern anyone. But then just before I was diagnosed with MS in 2000, a chiropractor pointed out the curvature in my spine.

    Not sure if it was ever as bad as yours, but now I sit slumped to one side in my wheelchair. With so many spasms anyway, and a misfiring brain/spinal cord, its just another annoyance.

    Maybe things might have been different if it was noticed earlier OR I'd be in your position. And that sounds worse.

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    1. And I'm always sorry to hear about yours. MS is horrible. Having spine issues on top of that just makes it even worse. I'm so sorry. Some people don't have my same issues after corrective spine surgery, but so many do. I don't know if you'd be worse off or not. I'm just glad you're managing now.

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    2. Thanks Chrys. As a result of your post, I've now discovered that there is an Adult Scoliosis, which is possibly what I have and why it wasn't diagnosed with it. And it can be treated - unlike the MS.

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    3. I'm so glad I could inform you on this. Yes, adults can have it and not know it. It just usually develops in the teen years, but many adults get diagnosed with it, too. An MRI and x-rays can really tell you what's going on.

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  2. I think I would enjoy Ireland too! I hear it is really beautiful!

    Thanks for sharing your experience about scoliosis. I went to school with a girl years ago who had it; she had to wear a type of brace; she hated it but it did the "trick" in that she didn't need surgery at the time; not sure if she eventually had it. But definitely agree with the importance of screening for it.

    betty

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    1. The beauty is what is calling me there.

      Yes, if caught early enough, braces can help until the growing stage ends. After that, the risk of the curve getting worse is gone. Those braces are very unattractive, though, and uncomfortable. I hated mine.

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  3. Oh, that sounds awful. I'm glad you are a warrior and made it through. The worst things I've had to experience as far as pain were: breaking my arm at five, giving birth (twice), passing a kidney stone (twice), and migraines. Just for the record, giving birth was worse than the kidney stones. My husband has had a couple of brain surgeries for a tumor. (He is okay!) I don't know anyone with scoliosis, but I will watch my daughters carefully. Thank you for this post.

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    1. Giving birth and passing kidney stones are two thins I haven't done. I hope I never do the latter.

      I'm glad I could make you aware of this, so you can keep an eye on your daughters. :)

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  4. I avoid surgery at all cost, as that can do more harm then good sometimes, but then it does help in some cases too. I'm just f-ed up. My back hasn't touched anything in almost a year. Stupid nerves, ugg.

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    1. Sometimes, surgery really can do more harm.

      Eek. How do you sleep?

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  5. Hope you get to go to Ireland!
    I never knew what caused scoliosis. I wonder why more girls get it?

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    1. Thanks!

      I don't know. Maybe our spines are weaker? Which I doubt. I think it might be because we may have one sudden growth spurt and our spines can't catch up. Where us boys tend to have several growth spurts.

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  6. Hi Chrys - I've read an article here on the subject with some exercises ... but can't remember where I'm afraid. It's a really unfortunate problem - but if got sorted out early in life - it can be got over ...

    Just very nasty though ... thank goodness you're made of strong titanium stuff ...

    My hip wasn't diagnosed til I was in my 60s .. now I'm fine - op done and dusted - I was lucky ...

    But Ireland is beautiful - hope you can get here sometime ... and I'd love to visit NZ and Aus and see more of the States and all countries! Cheers Hilary

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    1. I've been looking for good exercises I can do, but so many of them that they show people with bad backs can do, I CAN'T do. haha

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  7. You are totally right that it's your battle scar!

    When I was a lot younger, I read Judy Blume's book Deenie where the main character wore a back brace for scoliosis (I believe I have that correct....)

    And yeh for St Augustine and Orlando! :)

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    1. :D It took me a while to look at it that way.

      I read that book, too. Yes, she wore a brace. One day, I want to write a story with scoliosis that is more like my experience, and what others actually go through.

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  8. Ireland would be a lovely visit. As a PE teacher, I've had many students with scoliosis. Two with rods and others on all ranges of the spectrum. In PA, school nurses check students for scoliosis from elementary throughout middle school so most cases are addressed very early. You're one tough lady.

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    1. My PE teachers were required to check all of our backs in 8th grade. This happened about 6 months before I was diagnosed. Apparently there was no curvature then, or if there was, they didn't notice it.

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  9. That sounds terrible. My daughter had some problems as she grew, but they ruled out scoliosis. I hope you do get to Ireland and let me assure you that their are some wonderful places in Michigan--especially up north along Lake Superior!

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    1. She's lucky that they ruled out scoliosis. Yes, I plan to go back to Michigan to see family and to actually go to some of those beautiful places. Especially Mackinac Island.

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  10. Wow, that was an incredible story! I'm sorry that you had to go through that.
    I had to have surgery when I was a baby because I had hydrocephalus, which is basically fluid build up in the brain. They put a shunt in that drained the fluid through a tube into my stomach. The doctors told my parents I'd probably be blind but thankfully that didn't happen! When I was four I had another surgery to lengthen the tube. I have a two inch scar on my stomach from that. There's also a scar on my head, obviously, but it's hidden by my hair. I usually forget it's there.

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    1. Thanks. It did make me strong. Mentally and physically.

      I've heard that quite a few babies end up needing that surgery. So sad. Blind? Gosh. I'm so glad that didn't happen.

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  11. To my knowledge I've never known anyone with scoliosis. I was concerned when my middle daughter was younger that she was developing such a condition, but I guess she was just tall and had bad posture habits. She seems to do well now and carries herself like a fashion model.

    My medical condition is heart arrhythmia for which I had a procedure done, but it wasn't really a surgical operation. I went in the morning and was discharged in the afternoon. I've been fortunate to not have had many of my own hospital experiences.

    I've made cross-country U.S. trips many times as well as many long trips that were not quite the total breadth of the country. I never grow tired of this travel as the United States has so much to offer from the standpoint of sites, history, and the people. I love the United States.

    Arlee Bird
    Tossing It Out

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    1. That's great! I'm glad she didn't have scoliosis.

      I'm glad you've been fortunate not to have many hospital experiences. I've had 3 surgeries (one major, one minor, and one for my gallbladder). Plus, dental surgery last December.

      Delete
  12. Oh, do go to Ireland, Chrys! I know it's expensive and money is tight, but you'll never regret the money you spend on travel. Maybe there are opportunities to write in exchange for the trip--travel companies, hotels, etc. It's how I got to Africa.

    As for surgeries, I've had my gallbladder and a cyst removed, but that pales in comparison to your experience. I'm so sorry you went through that. I have a slight scoliosis at the top of my back due to an incident when I was in my late teens, and as a result, my opposite shoulder gets pulled out of place a lot.

    My heart goes out to you for all you went through! You are definitely a survivor. Have you considered writing a non-fiction ebook about it? There must be a lot of young women going through the same thing and panicking.

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    1. I'll have to look into that.

      I've also had my gallbladder and a cyst removed. Those are the two minor surgeries I've had. I think I recall you mentioning that to me once when I blogger about my surgery before.

      I've written an essay about it. What I'm actually thinking of doing is writing a fiction story. Like Deenie but up-dated and for YA/NA.

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  13. So sorry you've had to go through that. My grandmother had mild scoliosis, but nothing that hindered her or required surgery. You definitely are a woman of steel. Wear that battle scar with pride.
    I hope you do get to Ireland. I went once many years ago. It's such a beautiful place. I'd love to go back some day.

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    1. I am wearing my battle scar with pride. :)

      I am striving to go to Ireland. I really am.

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  14. Your experience sounds pretty awful. I didn't know much about scoliosis, except that it's a curvature of the spine.

    I've had seven surgeries, four on my right leg and three plastic surgeries on my stomach and abdomen (first to remove a dysplastic nevus and some scar tissue nearby, and then to remove my burn scar tissue). I really hope I never need an eighth surgery, both because it's so hard to recover from and because I consider eight an unlucky number.

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    1. Yeah. It's not pleasant. The spine is the structure for the whole body, so when it goes out of whack like this, it causes a lot of problems.

      I remember you telling me about your surgeries before. You are tough!

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  15. My spine curves slightly at the waist, but it's never given me problems, other than my shoulders look lopsided. I am very thankful for that.

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    1. Not the lopsided look- the lack of pain. Geesh. I should proof before hitting publish!

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    2. Yes, you probably have a mild form of scoliosis. Thank goodness it hasn't given you problems.

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  16. A good point to make for the younger generation,
    I had lower back surgery many years ago which left me with a weak top vertabrea with all the symptoms you mentioned. Painful though it be there are people worse off than me at least I can walk about.
    Let's hope the younger people take notice of your most valuable post.
    Yvonne.

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    1. Weak vertebrata would cause a lot of problems. I know what you mean about people being worse off. I am thankful that I'm not worse off.

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  17. PS: i FORGOT TO MENTION: Go to Ireland, I lived there for a while both north and south are beautiful and the scenery is breath taking. Oh ! you may meet my Danny Boy there. Good luck.
    Yvonne.

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    1. I want to! I am trying my hardest to be able to go. :)

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  18. I didn't realize scoliosis could be a danger during the teen years. I hope a lot of parents read this and start checking their children. You've had quite a difficult journey, so thank you for being kind enough to share your experience so others might avoid going through the same thing.

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    1. Yes. The teen years is when scoliosis occurs. I hope so, too. And thank you for reading about my experience.

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  19. My boss's son had this surgery recently and prior to that I was not even aware of it. I couldn't believe all that his kid went through. So sorry you had this experience! And sorry that it is something that continues to give you problems. *hugs*

    I would love to visit Ireland as well. And my dream has always been to drive all over the US, but especially the West. Here's hoping we both make these trips one of these days.

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    1. Before I was diagnosed, I hadn't really heard about it either. I definitely didn't think I'd get it.

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  20. This is the first time I'm reading about it. I'm shaking my head about what you went through. You are a woman of steel.

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    1. Thanks, Kelly. And it's funny that your last name is Steel. ;)

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  21. If you get to go to Ireland, you will fall in love with it. I would love to go back and so would my husband and kids, though hubby has already been there three times more often than the rest of us (before we were married and had kids). I thought St. Augustine was rather lovely; I wouldn't call it unexciting at all!

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    1. I know I'd fall in love with it.

      I didn't mean St. Augustine was unexciting. I love St. Augustine. The places I went to in Michigan were unexciting.

      Delete
  22. I had a friend in grade school who wore a back brace for scoliosis. She moved away during 6th grade so I don't know how well it worked.

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    1. Hopefully it worked out for her. Those braces...suck. lol

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  23. I, too, experienced this surgery. I had dbl curves like an S. I got lucky because the surgery went through without a hitch. The pain was unbearable and the recovery long, but aside for the giant scar on my back I don't really feel limited. Im very thankful for the surgery and my surgeon.

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    1. I didnt know that, Jaclyn. Yes, scoliosis is when the spine is shaped like an S. I, too, had double curves but only surgery for the bottom curve. I'm glad you're not limited.

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  24. I have some earrings from Ireland. They are quite pretty. I hope you get to go. I've never known anyone who had scoliosis, and I'm very sorry you had it. As you probably know because I whine about it all the time, I was in a car accident in 2009 and broke my back in five places. The pain was absolutely unbelievable, and I'll never make a complete recovery. The day I got home from the hospital my husband of almost thirty years had me served with divorce papers. I toddled to the door with my back brace and walker to sign for the stupid papers. I should have had him served when he was psychotic and suicidal, but I'm too damn nice.

    Love,
    Janie

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    1. I couldn't imagine, not even with what I went through, what it was like for you having your back broken in 5 places and the recovery. Wow. I'm so sorry you had to go through all of that, especially when you were already in pain.

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  25. Hi Chrys,

    What an ordeal you've endured. It's understandable you wish to bring further awareness of your diagnosis of scoliosis. Kudos to you for making the most of your situation with inspiration and a touch of humour for good measure.

    I've been chatting with some Leprechauns. They wait for your hopefully imminent arrival on the Emerald Isle. I have a good friend from Dublin.

    I'm contemplating going to Tenerife.

    Take it easy and keep smiling.

    Gary

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    1. I like to spread awareness about scoliosis because I never thought I'd get it, and not many people think about it. Thank you for chatting with some Leprechauns for me. I hope I can meet them. :)

      Delete
  26. If I'm recalling right, I think my older sister has a slight curvature of her spine, but it wasn't anything that got worse or needed fix and she discovered it later in life.

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    1. She's fortunate. Many people do have slight curves that don't need fixing.

      Delete
  27. As someone who takes a lot of joy from physical pursuits such as football umpiring and martial arts, I'm not sure how I'd cope with being unable to even stand in one position too long.

    Ireland sounds lovely, but very cold :P And you'd need to sit on the plane which I imagine would cause trouble.

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    1. I push myself when I shouldn't. I wouldn't be able to play a sport or maneuver well enough for martial arts.

      I would endure the pain of the flight to go to Ireland. :)

      Delete
  28. You have suffered a lot. You are a brave lady. Thanks for sharing your story. I have a curved spine, but it's not been diagnosed as scoliosis. One of my sons has a curved spine too, which kept him from getting the job he really wanted. I guess we're light cases.

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    1. You're fortunate that neither were diagnosed as scoliosis. Hopefully neither of you experience anything worse than that.

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  29. That sounds awful. I'm so sorry.

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  30. I have a small case of scoliosis but nothing severe like what you have experienced. My former sis in law has severe scoliosis where her spine was over to her left shoulder. She actually has a severe hump and is in severe pain. She never did get an operation because she was told she has a 50/50 chance of never walking again. As I mentioned before I have Ehlers-Danlos and my pain is constant and seems to be getting worse. There isn't anything that can be done unfortunately except for taking pain mess and pain management which I have done.

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    1. Oh my! A 50/50 chance of never walking again? Yes, she certainly has a severe cause. Gosh, I sympathize for her. That is not easy. I know what you mean. Nothing really can be done.

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  31. Oh, my. I had no idea what this was. This was a lot of info about it and I learnt so much today.

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    1. I'm glad I could tell you about scoliosis.

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  32. Chrysler, I'd heard of scoliosis bit had no idea it was this debilitating. I'm so sorry for all the pain you' have. Thanks for sharing your journey with us.

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    1. Some cases, like mine, are debilitating. Others are fortunate and don't go through this.

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  33. I'm so sorry you've had to deal with this, Chrys. You are brave and tenacious. A friend of mine has it and it's tough.
    Hugs

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    1. It is tough. I wish your friend well.

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  34. I've always sensed you're a warrior! They do wondrous things with surgery these days, I'm glad your story is one. As a kid one of the neighbor girls had it and wore a cumbersome brace that seemed more trouble than help. But it was the only way she could stand or walk. She had her hands full trying to babysit five siblings who (naturally) often took advantage of her limited mobility. I do hope most of the pain has subsided for you.
    My issue was only whispered about since 'way back when' you were institutionalized if you had epilepsy.
    I don't even take medication anymore :-)

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    1. P.S. I hope you get to Ireland one day!

      Delete
    2. Those braces are awful. I used one after my surgery and it hurt a lot. On top of that it was bulky, uncomfortable, and ugly. How sad that her younger siblings took advantage of her like that.

      It makes me sad to think of people with epilepsy were treated in the past.

      Thanks!

      Delete
  35. I've been very lucky throughout my life. One broken arm and one surgery that were barely a blip.

    Anna from elements of emaginette

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    1. You're very fortunate, Anna. :)

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    2. You're very fortunate, Anna. :)

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  36. Ireland is on my list of places I hope to visit one day. It is such a beautiful place and I love the accents :)

    It sounds like you went through quite an ordeal with scoliosis. My scoliosis is minor compared to yours. When I was 18 or 19, my doctor told me that I had scoliosis. I had no idea! My waist was uneven, which I thought was odd, but I hadn't noticed any other symptoms. I have since noticed that my arms and legs are very long, but my upper body is short because of that slight curve in my back. Now, I consider myself blessed because it has not given me any problems beyond image insecurity and an occasional backache.

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    1. 18, 19 is pretty late to be diagnosed (as a teen). I'm glad you haven't had any problems with it. And I can relate to your insecurity. My arms are also very long. It's hard to hide that in FL, which is why I love it when it gets colder and I can wear quarter sleeves to help disguise their length.

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  37. Ouch, Dude. I will definitely keep an eye on that for my children. Thank you for sharing your experiences and spreading the warning and awareness.

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    1. I hope your kids' spines stay healthy. <3

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  38. I guess I'm fairly fortunate I don't have many ailments. As for anyone with Scoliosis, you are the only person I know. From a few comments and posts in the past, I know it can be very hard and painful for you. So I give you all my best well wishes and such. For what that's worth to you.

    As for travel, I think you would LOVE Ireland. It's such a beautiful country. My friend and I road from Dublin to Belfast one year. It was breathtaking. Dublin was great for all the old pubs, one, the Brazen Head, established in 1198. Yes, you read that right. 1198. While I was there I took some photos and even a short video of people passing by. I'm crazy like that. And then of course Belfast for the Titanic Experience. I don't recall if you checked out my photos on that or not, but they are all on my blog under the photography tab. If you are so included. I do so hope you get the chance to go some day. It's amazing!

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    1. Thanks, Jeffrey. :)

      I'm always so envious when I read about people's experiences in Ireland. I can't wait to go. I'd probably never want to leave. :)

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  39. Ireland's a great place. I must spend more time there. Then again, I'd like to spend more time lots of places :)

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  40. I hope you get to Ireland, Paris is where I really want to go.
    I'm sorry for your pain, to suffer so as a child is horrible. I hope the pain has lessened for you.

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    1. It's lessened in some ways and in others has become more painful. I'm dealing with it. :)

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