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:
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!
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.
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.
The above site highlights different blogs specifically about Scoliosis from people all over the world.
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
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!
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.
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.
The above site highlights different blogs specifically about Scoliosis from people all over the world.
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
I just found out that I need to have spinal fusion surgery for my scoliosis this week. Aside from the major risk factors, I am concerned about mobility and scarring (your scar looks incredible from the last pictures you posted!). Can you share more information on any mobility you feel that you have lost? (My fusion will be a little lower than yours. Also, would you consider posting new pictures of how your scar looks now that it is completely healed? I am so nervous and it is so hard to find people that have shared this information.
ReplyDeleteThanks for being so open about your experience - it is so helpful for us to hear.
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DeleteI am always more than happy to share any and all information and tips on my experiences. Also, my friend that had a spinal fusion w/my surgeon has a page on facebook she and I and others that follow will respond to. You can email me directly at amanda@scoliosissurgerysurvivor.com.
ReplyDeleteAs far as mobility, in the beginning its very hard. You can not bend, twist, you are in a torso cast with a walker. Getting a better walker that has a seat is a really big help because if you can't move much more you can rest. It took me until about a year to be able to start bending a little, I can bend my knees and almost touch the floor. You will be doing a lot of squats to pick up things off of the floor. That takes a long time to get used to. I can just in the last couple months turn and look over my shoulder. My scar looks amazing. I will have a friend take some pictures this weekend and do another updated post. Walk at least 15 minutes every day if you can. The more you get up and move the better you will feel and the quicker you will heal.
The pain medication will upset your stomach in many ways. Taking it with a yogurt each time will help you from getting an upset stomach and with the terrible constipation and bloating. You won't feel like eating. Also metamucil makes some wafers that are easy to eat and help. DO NOT SKIP OR MISS YOUR MEDICINE! If you get behind the pain will be overwhelming.
Wear your cast even though its so uncomfortable. Be very careful with car rides and children or dogs jumping on you. I have probably lost about 30% of my mobility and will only ever be at 80% of what I was. Email me if you have any more personal questions or concerns. I will always respond. What date is your surgery? I wish you the best and I am sure everything will be okay.
Stay positive, get on twitter mine is @ScoliSurvivor. There are a lot of supportive people on there and sites and helpful comments.
The facebook page to link into other people I know that will always answer is https://www.facebook.com/pages/Stay-Ahead-of-the-Curve/160880477349748?fref=ts
Love and best wishes,
Amanda
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