Weekly Link Roundup 09/22/2011

In light of my scoliosis revision surgery, this week’s roundup focuses on the spine. 

1. National Scoliosis Foundation — Est. 1976, NSF is a nonprofit organization lead by patients that strives to bring patients, loved ones, physicians, together for the cause. NSF provides educational materials for patients and their families (books, video, brochures, local NSF chapters), goes to great lengths to promote public awareness and encourage research. The organization can also provide you with information on surgeons or screening programs in your area. NSF was the first resource I found years ago when I received my diagnosis of Scoliosis, and I have visited their forum regularly. I also recommend subscribing to their newsletter, The Spinal Connection, which highlights the latest in research, treatments, and awareness adventures. Older newsletters are available for pdf download, completely free. While you’re add it, make a donation by ordering a scoli-band, their Scoliosis awareness bracelet. 
   
   
2. iScoliosis — The most patient friendly website I have found, with excellent resources for both families and patients, especially young adults. With printable lists of questions for both parents and patients to ask their surgeons, to advice on how to discuss the emotional aspect of the condition with loved ones, to a glossary of scoliosis-related terms to be familiar with, iScoliosis is incredibly thorough. Check out their great article list, FAQ page, and doctor finder, and keep iScoliosis tucked away for reference. Also a great resource for younger adolescents to connect with and learn about others their age going through bracing or surgical treatment.
   
   
3. Scoliosis Research Society — Interested int he latest clinical trials and research? Check out SRS, a highly acclaimed international society founded in 1966 that works with 1,000 leading spine surgeons and health care workers to encourage new research, treatment, and education of Scoliosis. Check out their dates for conferences and meetings near you, get involved or make a donation, read patient stories, or learn about the Global Outreach Program, which provides patients in third world countries with free scoliosis treatment!
   
   
4. Scoliosis Association (UK) Helpline — A UK-based organization that has created a helpline that is open five days a week, Monday to Friday, for families or patients to call and vent, ask questions, and find support anonymously. So valuable. Check out the rest of what Scoliosis Association is all about :) and for those of us in the states, here’s the link for Scoliosis Association (U.S— actually located in Boca Raton!).
    

A reminder: never trust a resource (especially a few on tumblr that I’ve seen by clearly confused pre-teens) that claims that natural cures will cure your scoliosis. Yoga is excellent for strengthening muscles and alleviating pain while maintaining flexibility, but it will not cure your scoliosis. Drinking excessive quantities of milk will not straighten your spine and the best medical opinion you can get will not come from an online resource, but your surgeon. Online resources should be used for general knowledge to form questions and ideas, and then take them to your doctor for clarification, or for a second opinion. Never forgo seeing a physician in place of the internet.


Another reminder: When reading support forums and other stories, keep in mind that everyone has a different physical make up, different genetics, external factors, and different surgeons/hardware. Never compare yourself too closely to another horror story and get yourself worked up. Remember that often times, those who post on forums unfortunately got the short end of the stick and are looking for help, not necessarily the average experience.

Surgical Hiatus: Wish Me Luck!

Trying to get everything in order for surgery and my return home late next week (hopefully), and filling up the queue with a ton of posts/quotes/articles to keep you all entertained for two+ weeks. The queue will definitely work on tumblr, however I am not too sure about blogspot. Check tumblr for daily updates if you do not see posts coming up here, and I will fix errors when I'm back in action. 

I will answer your questions when I get back and am able to use a computer or focus, and a huge thank you to everyone who has sent kind messages both here and on facebook wishing me well with positive thoughts or prayers through my surgery! You are all so wonderful and I will respond to each of you individually when I’m home.

I leave early Monday morning at 4:45 for the hospital. My check in time is 5:45 and my surgery is scheduled for 7AM sharp. They have assured me I will be given oxygen with a sedative to keep me calm or knock me out so I don’t have an anxiety attack or throw up from nerves like I did last time (granted, I was eleven, but still), so I am not too worried. I think I’m probably dreading the foley catheter just as much as the actually surgery and recovery (how pathetic is that?). Looking forward to putting an end to the whole ordeal. It’s going to be a long road, but at least I am moving forward :)

I’m off to spend the rest of day relaxing with friends and family. I will update the facebook page when I am first able to alert friends, family, and followers that I made it through surgery okay without problems.

I hope everyone has an easier week than I will be having! Talk to you all in a week or so,

Emily

 Feel kind of awkward with my boobs all up in your face (not sure why the x-ray is like that…), but this would be my wonky spine that is causing me so much pain. The rods go farther up (this is only mid-spine and the black bar is there because the x-ray screens were separated) and the lower spine is completely contorted in weird directions. That short rod is pressing against and irritating my diaphragm. Can’t wait for the rods to finally be OUT of my body come Monday morning!

Lessons Learned: A Beautiful Journey

There is immense strength to be found in yourself. Sometimes, we just need someone or something to show us how to find it.

2. I was diagnosed with it in the year:

Rheumatoid arthritis and autoimmune issues: April of this year
Scoliosis: 2001
Pelvic pain/SE: 2010

New Study Shows DNA Test Highly Accurate In Predicting Curve Progression in Scoliosis Patients ›

Raynham, MA – (December 1, 2010) –A new study shows the SCOLISCORE™ AIS Prognostic Test, a DNA test to determine the likelihood of curve progression in children with mild adolescent idiopathic scoliosis (AIS), an abnormal curvature of the spine, is 99 percent accurate in predicting which children are least likely to progress to a severe curve (Cobb Angle of 40 degrees or more).
So exciting.

Lack of Communication in the Medical Field

is incredibly frustrating. Though I understand in most circumstances why it is so difficult for doctors to communicate with each other, what I do not understand is when they do not even make the effort.

Weekly Link Roundup 08/07/2011

1. Aidsforarthritis— Awesome awesome resource for various products to help people with arthritis or other physical disabilities. AFA sells everything from devices to help turn door handles to kitchenware
   to a tool that makes putting on jewelry easier. Definitely a great resource.
   
   
2. The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities Chronic Pain, and Illness— Written by Miriam Kaufman, Fran Odette and Cory Silverberg, The Ultimate Guide to Sex and Disability touches on topics from sexual self image to fatigue, even incompasses the subject of sex toys (and much much more). Definitely a book to check out regardless of your age, gender, or disability/illness, and a great tool for partners of chronically ill individuals to read. A must for struggling couples.
   
   
3. Relax the Back— This company provides aids to ease and eliminate back and neck pain in the car, in the office, or simply lounging at home. Everything from physical therapy aids to ergonomic chairs. A site to consider if you have degenerative disc disease, scoliosis, AS (anklosing spondylitis), or RA just to name a few. What I would do for a tempur-pedic mattress…
   
   
4. Migraine Triggers: Identifying and Managing— I’ve suffered from debilitating migraines since I was a sophomore in high school. They have gone through phases of intensity since I was fifteen, and only this year did I learn exactly what triggers and worsens my migraines. This helpful article on Migraine.com addresses common triggers, how to identify them, and how to manage them.  Oh, and just a quick fact: migraines are associated with inflammation in rheumatoid arthritis patients. My migraines were one of the first signs that something was wrong, but my doctors at the time were essentially incompetent  my symptoms were not connected until this April.

Blog of the week: Naked Medicine and Smart Healthcare — Jane Chin, Ph.D explores medicine and current health care issues, patient activism and advocacy, smoking, stress, the overuse and misuse of antibiotics, you name it.

As always, please send me an email if you would like your link removed or altered :)

It does not matter how slow you go so long as you do not stop. — Wisdom of Confuscius

I’ve been thinking about this quote a lot lately and how important its message is to the chronically ill or in pain. What does it mean to “stop” when you have a chronic illness? And how does one accept having to slow down? Perhaps one of the most important subjects I will touch on…

Bad Day Blues and Breaking Points

Rheumatologist appointments are always a nerve-wracking experience for me. It seems that between each appointment I develop absurd amounts of new symptoms I had no idea were related to my autoimmune diseases. I am constantly holding my breath wondering if today is going to be a good rheumy day or a day of poor blood results and bad news— a bad rheumy day. Today was one of those bad days…