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.

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.

Weekly Link Roundup 08/30/2011 — Special Edition

According to this new study, researchers discovered that “at least least 10% of suicides in Britain are linked to terminal or chronic illness, accounting for more than 400 deaths a year,” meaning that one in ten suicides is linked to chronic illness. This does not even cover the suicide link in the US.

I’ve seen some terribly tragic and concerning posts on both tumblr and blogspot recently from chronic illness sufferers hopelessly trying to put an end to their mystery diagnoses by contemplating putting an end to their lives. It’s no surprise that the suicide rate among those who are chronically ill or living with chronic pain are higher than the average.

For those that do not suffer or do not care for those who do suffer, it is hard to understand how the concept of an end is not morbid, but a last resort for comfort— a sanctuary, in a sense. Rather than death being tragic, it is an apathetic feeling for life in pain that drives one to seek an end. But no individual, regardless of disease, should have to take their own life in order to gain control over their suffering, and there are resources out there to help you learn to take control and find yourself outside of the pain and illness.

This week’s link roundup will provide resources for those feeling like they have reached the end of their rope, and I write it in memory for RA Superbitch, who passed a few months ago after suffering from RA and other complications. I hope that everyone reading this understands that though they may not be able to cure their pain or disease, they can conquer it. They have the strength and the courage, and there are resources to help you discover it.

1. Suicide Hotline-- If you need to talk, if you need to listen, whatever you need, they are there for you 24/7, no charge. Do not hesitate to call: 1-800-273-TALK (8255)
   
   
2. CFIDS/FMS Self Help Organization -- (C/FSHO for short)— A non-profit organization created by Dr. Bruce Campbell, a CFS patient who was a “consultant to self-help programs for chronic illness at Stanford University Medical School” prior to becoming ill. C/FSHO is dedicated to providing support groups and resources, stress management techniques, strategies to decrease sensory overload, techniques to help pace yourself and your energy, dealing with family and friends, low cost self help online courses to managing and coping with your illness (though I cannot vouch for how successful they are), and much more. Many of the articles are relevant to a wide range of chronic illness, so do not disregard the link if you have something other than CFIDS/FMS.
   
   
3. National Pain Foundation -- This specific link goes directly to their Community page, linking you to a bunch of different organizations that provide support groups. Reach out to others, please. For both your body and mind. NPF also has an entire section on chronic illness and mental health.
   
   
4. How to Cope With Pain -- An organization dedicated to those suffering from chronic pain and their loved ones. Stress management, relaxation techniques, breathing exercises, guided imagery, and so on.
   
   
5. But You Don't Look Sick's Bad Day/Venting Forum --  Exactly what it sounds like. Need a place to vent? Someone to talk to or relate to? Here you go.

Some other ideas:

• Find an art therapy group if you are artistic
• Push yourself (or tell someone you trust that you need a push) to find a new hobby
• Find a constructive outlet. Working in the community, either from your couch or in person, is a great way to fuel some of the negative energy into something positive.
• Find a support group.
• Start a support group.
• Find a therapist who specializes in illness, or seek out a cognitive behavioral therapist who can show you specific coping mechanisms to combat the anxiety, stress, depression, and all things that come alone with your disease(s).
• Consider biofeedback
• Consider meditation (trust me on this one). Sometimes visualizing your pain and putting yourself into a focused state of mind can help you get through a particularly painful hour.
• Reach out to someone somewhere. Online, in person, a stranger or a friend— reach out. Recognizing the need for help is the first step.

PLEASE send me any other resources you know of. I am creating a kind of- “End of the Rope? Find help here” page of links for support groups, forums, and whatnot.


                                    

Please Help Spread the Word Worldwide About RA/Rheumatoid Arthritis!
Be an Ambassador for RA Awareness: Please help by clicking on and sharing this simple campaign with links to this page via your blog or website, Facebook, Twitter or email.

Click the photo to check out Thrive with RA!




                                                    

Weekly Link Roundup 08/23/2011

This week’s theme is pain. Not just any pain, but pelvic pain. That’s right, I’m talking about vagninismus, vulvodynia, endometriosis, IBS, internal cystitis, etc. I started having pain with sex my senior year of high school and finally received a secondary diagnosis of vulvodynia in April of this year. It is one thing I have never spoken about to anyone  (other than my significant other at the time), mostly out of embarrassment and shame. There is no reason for those feelings though, and it is time to get real. Chronic pelvic pain is debilitating and most women suffer in complete silence. It’s not easy to explain or maintain a ‘normal’ social or sex life. It’s even harder to get women talking about these sensitive conditions, but is time we begin and I am ending my silence today. Keep in mind most of these links incorporate more conditions than just vulvodynia.

1. Vulvar Pain Foundation — The VP Foundation will send you a newsletter keeping you updated on the latest treatments, seminars and workshops, specialists, and research. Advocate and educate, ladies. It’s time to stop being ashamed of your vagina. That’s right, I said it.
   
   
2. Vulval Pain Society— VPS “is a confidential service for women who suffer from vulval pain due to vestibulodynia and vulvodynia.” Providing a VPS handbook, support groups, treatment options, self help for both the afflicted and their partner(s), and possibly my favourite addition to their website: Smears Without Tears: A patient’s guide on how to get through your speculum exam with minimal suffering and your dignity intact. Definitely keep VPS in mind when looking for help and hope— it’s out there.
   
   
3. Life With Vulvodynia— A personal take on life with pelvic pain, from this lovely woman’s sex life to nursing school. As she says “It can get better. There is hope.” You are not alone.
   
   
4. Vulvodynia Matters — A Boston-based nonprofit organization dedicated to helping women overcome the pain and isolation of vulvodynia. VM provides resources„ information, a link to other pelvic-pain related blogs and online support forums, and the latest news about chronic pelvic pain. There are tons of volunteer opportunities to get involved in and plenty of events posted on this site, especially if you live in the Boston area. I knew I loved this organization as soon as I saw the quote on their home page:
   
   
   
   “If there’s an elephant in the room, introduce it.”
   —Randy Pausch, The Last Lecture
   
   

Blog of the week: Gotta Love It! — Fashion, cupcakes, love, good eats, and so much more, Gotta Love It is run by the lovely Shea, a childhood friend of mine. She shares her fashion finds for less and I love her make up reviews. Gotta love it!

Be Your Own Advocate: Patient Records

Why having a copy of your medical records is important-- a must-read for the newly diagnosed

I was reading through my medical records from my first rheumatologist (who I found to be a complete idiot). He would ask me questions, but not let me adequately answer them without cutting me off, ignored many of my symptoms, made jokes about abuse when I came to the office by myself rather than with a parent (not funny to someone who has actually experienced said abuse, but thanks, doc.), etc. Needless to say, it was not a pleasant experience and I did not go back to that physician.  I did, however, request a copy of all labs/paperwork/physician notes for my own personal file and to send to Florida State for my medical withdrawal. In the process of reading these notes, I saw noted that I was sexually active. True. Sexually active “with a male for approximately two years now.” Wrong. Being sexually active does not mean one is heterosexual. Assumptions lead to consequences. This fact is not necessarily relevant to my specific condition, but what if it had been? What if it had been a different assumption and my doctor missed something because he did not take the time to listen or ask?

Better still was his note about how I was on a daily regimen of methotrexate. What? I was never prescribed that medication prior to that date. It was deemed too risky to start considering the results of my liver function tests. Was that in my file? No. The false note about my sexuality? Not relevant to my health, really, but was personally insulting. A false note about a serious medication with serious side effects? Absolutely relevant to my health and has since confused physicians who have needed my records and his notes.

So what are the lessons to be learned from this?

1. Request lab workups and all medical records from each of your physicians. This includes their notes. Feel free to make up an excuse for why you need them, or simply say you want to personally keep track of your records. There is nothing wrong with being involved and having copies. In fact, it is vital that you do.
   
   
2. Read the doctor's notes. I cannot stress this enough. Read them, review them, and if another physician requests them and the notes contain a medical error like mine did, make a note of this using either a high lighter or post it note and bring it to your doctor. Correcting errors will save your future doctors both time and confusion. It is not a bad idea to lightly point out to the physician who made the error that perhaps they made a silly medication typo in your file, and you want to let them know in case it could be important. If your physician isn't receptive or is personally offended, perhaps that is a sign you should find another doctor...
   
   
3. At 18, you are legally considered an adult. Meaning that unless you give specific permission, your doctor's office should not hand over your records or information to anyone, including your parents. If you are weary of your parents obtaining your medical files, double check with the office that they cannot be handed out.
   
   
4. Filing for disability. Should you file for social security disability benefits or have to deal with your insurance company, those medical records will be crucial to have (and know what's in them!). Read over them thoroughly and address any concerns you have before you submit them to whomever you have to for any disability claims. Do not be afraid to ask questions or address concerns with your physician. You are your own advocate before anyone else, but your physician should be your partner, not your opponent. If they are not willing to help you or speak with you about the matter, I seriously suggest finding a doctor that wants to be a team player.
   
5. Know your rights. The Health Insurance Portability and Accountability Act (HIPAA) details your rights to medical records and privacy standards. The HIPAA is long, so I am not going to post it, but it can be found here.
   
   
6. Before you pay, ask. Offices will often charge you a fee to obtain medical record copies. If you are asking for them for personal reasons, I absolutely suggest paying. They are invaluable to have. If you are requesting them to send to another physician, ask the office if they will send them directly to the other physician as a courtesy before you shell out some cash.
   
7. Organize. Organizing your records into a binder or folder and bringing it with you to appointments might sound strange, but it may help you big time. I've actually noticed most of the people in the waiting room at my rheumatologist's office all have huge binders with them (including interesting elderly women who have bedazzled their binders...). Don't feel silly, feel prepared. Your doctor will thank you.
   
   
8. Can my doctor refuse? Yes, if your physician believes that by giving out the records it puts you or another individual at risk, they can refuse to hand them over. However, if that is not an issue, they are required by law to give you your records. If you cannot get them through their office staff, your best bet is to contact the department of your state that works with HIPAA, or quite frankly, print a copy of HIPAA and take it right down to that office. If you're dealing with a hospital, go directly to their medical records department.

Weekly Link Roundup 08/14/2011

 

An Endometriosis/Pelvic Pain-related roundup this week!

1. Uncommon Manifestations: Sciatic and Thoracic Endometriosis— an article on Endosupp about the lack of awareness of these rare endo forms, their history, treatment, and clinical signs and symptoms. If you have endometriosis in your family, suspect you have endometriosis, or have a doctor who refuses to listen to specific symptoms pointing to SE or TE, please please please seek out a second opinion. As unfortunate as it may be, sometimes the physician must be educated as well. Doctors can learn a lot from an informed patient. Be your own advocate.
2. Endometriosis Support Forum on HysterSisters—HysterSisters is a site dedicated to women suffering from gynecological conditions and recovering from surgery, specifically hysterectomies. This Endometriosis Support forum includes over 101 pages of threads
3. EndoCenter— Endocenter is an organization that “addresses the ever-growing need for Endometriosis research, education, awareness and support on a global basis.” A great resource and database for latest endo news. Endocenter lists multiple contacts and websites for both online and in-person support groups, as well as volunteer and awareness opportunities. You can also request EC materials from the organization as well. Better yet, their headquarters is here in south FL :) 
4. TalkAboutEndo— A tumblr very similar in concept to Chronic Curve, only dedicated specifically to Endometriosis awareness. Straight, simple, and to the point— Talk About Endo provides endo facts, news, research, an honest place to discuss this painful disease, and most importantly, hope.

A question for my followers: Do any of you know of any resources that discuss and provide support to women trying to maintain intimacy in a relationship while suffering from pelvic pain? A painful sex support network, if you will. If anyone knows of any valuable resources, please send them to me— thanks!


Blog of the Week: Serif & Sans— Run by the lovely Miss Stephanie Sharp, an aspiring journalist with strong opinions and a unique perspective on contemporary issues. Her writing is both tasteful and profound with a unique eloquence in her words, touching on everything from Disney princesses to politics. Miss Sharp’s blog is a must-read.

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…