"What matters most is how well you walk through the fire" -- Charles Bukowski

Tuesday, October 18, 2011


Since leaving the hospital, I've been sleeping constantly. I mean almost all day and all night. I have queued posts on tumblr, but the queue doesn't work on this host for some reason. Please check tumblr until further notice of my recovery. Aside from flaring and pain, I'm healing well with no infections or complications :)

Back to sleep..!

Friday, September 23, 2011

What's in a Name? The Consequences of Labeling RA as "Arthritis"

Rheumatoid Arthritis is not what the rest of society considers “Arthritis.” I put this word in quotation marks because I find that nearly all of the people I interact with associate arthritis with Osteoarthritis— a condition that occurs with wear and tear of the joints with age. Yes, this is the elderly arthritis the commercials and brochures advertise, the kind your elderly relatives likely have some form, but no, this is not an autoimmune disease.

So when you tell someone you have “Arthritis” when you really have some form of Autoimmune Arthritis, you are not doing the disease or those suffering justice. There are so many people, so many children, with autoimmune arthritis who are desperate for better treatments and a cure, but may not live to see one because our society does not realize the epidemic of autoimmune arthritis. You don’t promote the necessary awareness or justification autoimmune arthritis so desperately needs, and so you do every autoimmune arthritis sufferer a disservice. You do a disservice and injustice to all of the Still’s Disease and AA (autoimmune arthritis) sufferers that have died as a result of their disease (yes, you can die from these disease should you have organ involvement or compression of certain vertebrae).

Please, politely correct people when they do not correctly name your disease. Politely correct people who claim that their Osteoarthritis is just like yours. Not to prove them wrong, not to compare who suffers more, but to separate the two very different conditions from each other and educate our society. We’ll never reach a cure if we don’t make it know that we need one.

What’s in a name? Power. The power to create change, end suffering, and be a patient advocate. Whether you know someone suffering or you are afflicted by the disease, never forget to be a patient advocate.

Did You Know?

According to CDF, though most chronically ill patients have insurance, it is estimated that over 30% cannot afford their copayments.

The Invisible Illness: Chronic Fatigue Syndrome Misunderstood ›

“It’s as common as diabetes, yet from a Ministry of Health perspective, it’s not even on the list of chronic diseases…”

Joe DiMaggio Children's Hospital

Photos of Joe DiMaggio Children’s Hospital, where I spend most of my time lately. You can’t tell me that’s not the most kick ass CT scanner you’ve ever seen in your life. The beautiful puppy you see there is Nutmeg, one of the therapy dogs on the surgical unit where I’ll be staying :) Photos courtesy of JDCH Facebook Page.

An event even a Seminole can appreciate...

Hey Gators! UF Hosts Walk to Spread Chronic Illness Awareness, Saturday September 24th ›

“The event will start at the Stephen C. O’Connell Center at 8 a.m. Registration is required. The walk is not a fundraiser, so there is no entry fee.”

“I think the general population, myself included, forgets to put their lives in perspective with the rest of the world […] When the public begins to recognize that there is an issue, there will be a greater number of people taking initiative to make a difference…”

To preregister,call the Health Disparities and Research Intervention Program at 352-273-9565.

Thursday, September 22, 2011

I have to share this with you. Between my actual disease and the medications I take to combat the disease, my hair has become weak, brittle, and falls out (this is for you, Methotrexate users), and harsh shampoos weren’t helping. My stylist recommended Pravana to me and it has changed my hair completely. It’s sulfate free and already after just three washes I’ve seen a complete turn around in my hair— body and shine like I just walked out of a hair salon, significantly less breakage and I’ve lost a lot less in the past week. It’s a bit expensive ($14.00 for the smaller bottle) and comes in various types (color seal, hydrating, clarifying, etc), but I serious suggest trying it if you’re struggling with hair weakness/breakage and loss. Click through link to their website and to read about their product. Go read reviews, I literally could not find a single review under four stars. And no, I am not compensated for my reviews.

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.

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