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.

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…”

Painkiller Paranoia: The Stigma of Narcotic Use Among Chronically Ill Patients

Examining the fear behind proper narcotic use and what it really means to be chronically ill and using narcotics.

Weekly Link Roundup 09/14/2011

1. Advocacy For Patients — Amazing amazing resource! AFP, created by a lawyer suffering from multiple chronic conditions, offers free advice and advocacy services to those suffering from chronic illnesses, focusing on everything from health insurance to social security matters to discrimination in the work place. I am linking to AFP’s blogspot, where you will find a link to their .org site. Even if you do not need this resource now, it is a link to tuck away just in case. Such a valuable wealth of information!
   
   
2. Psychology of Chronic Illness — Psychologist Nicoletta Skoufalos, Ph.D.,  discusses various facets of living with a chronic illness, written with the intent to serve as “thought provoking discussions.” Very interesting link for those of you interested or studying psychology or more specifically, the psychology of chronic illness/living and coping with a chronic illness.
   
   
3. Lupus Family — Created by a devoted husband whose wife suffers from SLE. Lupus Family was designed to serve as a “safe haven” of sorts; a “community of support for lupus patients and their friends and families” while providing a “safe haven.” A link to send to a family member or friend who is struggling to be a care taker or on looker of your disease, or a great resource for those suffering to get an idea of what it is like to be in the opposite role— a role that is equally helpless. Geared towards Lupus, but adaptable to similar conditions.
   
   
4. International Still’s Disease Foundation — The only organization I was able to come across that advocates for Still’s Disease. ISDF is a nonprofit organization that provides nearly all the information there is to be had related to Still’s Disease, from research to lab results, to support resources and the latest research. Definitely a site to keep bookmarked if you have Still’s or to send to family/friends.
   

*Send me your favourite blogs you think should be advertised as blog of the week :) Not only do you get to show off your favourite blogs, but I will have more to look at and stay busy with after surgery! As always, shoot me an email if you would like your link removed or altered in any way.
                       

National Invisible Illness Awareness Week 2011

National Invisible Illness Week 2011 is Here! September 12-18th.

Spread the word, spread the awareness, spread hope!

Surrounded By Silence: Chronic Illness and a Lack of Support

"Things change, friends leave, and life doesn't stop for anyone" -- The Perks of Being a Wallflower, Stephen Chbosky

The Chronically Ill Friendship...

Congress plans to cut 1.2 TRILLION in federal spending by November, yet arthritis costs citizens $128 billion annually ›

Please click this link and take just a moment out of your day to sign the petition. Whether you have Rheumatoid Arthritis or not, you are part of a connected online community of sufferers and living in a nation with over 50 million Americans and approximately 300,000 kids who are affected by arthritic conditions.

"If we don't stand up for arthritis research, who will?"

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!




                                                    

30 Day Invisible Illness Challenge: Catching Up

4-30. I've been too sick to update every day, so here are the rest of my answers in one shot.

Giving Chronic Pain a Medical Platform of Its Own

Tara Parker-Pope from the NY Times touches on chronic pain and the struggle to properly diagnose, treat, and understand this phenomenon. Why is it that our physicians are not educated to properly work with those suffering from chronic pain, and how can we as patients help?

“Most doctors view pain as a symptom of an underlying problem — treat the disease or the injury, and the pain goes away. But for large numbers of patients, the pain never goes away […] Chronic pain often goes untreated because most doctors haven’t been trained to understand it. And it is isolating: Family members and friends may lose patience with the constant complaints of pain sufferers. Doctors tend to throw up their hands, referring patients for psychotherapy or dismissing them as drug seekers trying to get opioids…”

“If the doctor can’t figure out what the underlying problem is, then the pain is not treated, it’s dismissed and the patient falls down the rabbit hole.”

Click the image to visit crohnsandarthritis.tumblr.com

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!

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.

30 Day Invisible Illness Challenge

 

30 Day Invisible Illness Challenge in honor of Invisible Illness Week - September 12th-18th.

Things About My Invisible Illness You May Not Know:
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights is:
10. Each day I take __ pills & vitamins:
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me::
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

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…

In many ways I depend on you - people who are not sick...

In many ways I depend on you - people who are not sick... ›

“…I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to normalcy of life. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.”

A letter to those without chronic pain from those with.
Please take a moment of your time to read this.

College and Chronic Illness: The Basic First Steps to Take: Part I

Going to college can be a scary experience for anyone, but throw a chronic illness (or multiple) into that mix and you’re bound to feel lost at some point.

This will be part one of a long series. I will do specific in-depth posts on certain aspects— dorm life, for example, will be a singular extensive post. For now, here you have The Basics: Preparing for School Part I…

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…