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.

 

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.

Leighton Creations: My Other Passion

Taking a break from everything chronic illness related to share with you my other love, designing jewelry. I'll be posting my jewelry site shortly, but in the mean time, I leave you with a peak at my latest creation. Excuse the cell phone photo:

Sterling silver chain, swarovski pearls wrapped in sterling wire to resemble a nest. Currently taking orders so if anyone is interested, shoot me an email.

Take Your Online Medical Advice With a Grain of Salt

The internet is great for research and general knowledge when it comes to health, but don’t forget that webMD shows you the worst case (and every case) scenario when it comes to a headache. Don’t forget that the blog you read, unless they are citing sources, cannot diagnose you or give accurate medical advice tailored to your body. I have said this before and I will continue to say it again and again: the internet cannot take the place of a physician’s opinion or advice and pseudoscience is not welcome here.

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.

Personal Update

Just spent three hours with my spine surgeon…who I kind of bombarded without an appointment. I’m sure his office staff thinks I'm crazy. As always, he accommodated us and stayed after hours to discuss everything. I feel 20x better after letting him know how detrimental all of these mishaps have been to my health and how I have literally no life since going off of my DMARD.

I think after speaking to Nurse K (the one with SLE) yesterday and me reiterating it to him, he fully understands the whole chronic illness bit more so than he did before. Dr. J said he would do the surgery on his day off if he has to, the problem is the other surgeon, Dr. D, who has a “busy schedule” and isn’t exactly accommodating, but my surgeon insists he will push him to clear his schedule for Friday or sometime this weekend. He’s chief of staff so he has some power over Dr. D. Can I just call him Doctor Dick? Okay then.

Off the record, Dr. J isn’t a fan of Doctor Dick’s personality or bedside manner and is appalled at how he spoke to me (he also apparently told him to cut the shit out after he heard about yesterday), but because my anatomy is so complicated and we’re unsure of what is actually in there (scary right?), he wants “only the best” to perform the thoracotomy and Dr. D is as good as it gets. I trust Dr. J’s opinion and appreciated his willingness to go out of the way for me.

I’m anxious about possibly having to take another semester off of school, but I feel better about the surgery.

I’m in good hands this time around.

Ginormous thanks for the kind messages and words of encouragement :) I’ll get back to you all by tomorrow,

My old autoimmune cocktail. My current one includes more medications than the ones pictured here.

Surgery Was Canceled. Again. For the Fifth Time

 My surgery has been called off for a fifth time, only this go around I was only feet away from the operating room.

I have reached the end of my rope. This will be long so I don’t have to explain to friends and family what happened 100 times.



A big thanks to the support and love, both online and from friends and family. I’d never be as strong as I am without you all, and I am so very grateful.

Check Out the Rheumatoid Patient Foundation!

Rheumatoid Patient Foundation

FINALLY! A Rheumatoid Arthritis Patient Foundation, separate from an “Arthritis” organization. RA is not arthritis. Spread the link pretty please and thank you!

"...Dedicated to improving the lives of patients with Rheumatoid diseases such as Rheumatoid Arthritis and Juvenile Arthritis through a variety of means, including research, public awareness, patient education and patient-led advocacy."

“When you get to the end of your rope, tie a knot and hang on.”

-- Franklin D. Roosevelt

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!

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.
                       

Surgery on Monday the 19th: What You Can Expect While I'm on Surgical Hiatus

Tumblr queue will be stocked since I’ll be taking a break to have and recovery from a huge spine surgery starting Monday, the 19th. I’ll be in the hospital for a minimum of a week, so I anticipate taking a three week break, possibly longer. I haven't used blogspot's queue and hopefully it will work, but if not I'll update after I am home from the hospital. Coming up in the four weeks:

• Multiple Weekly Link Roundups that are lengthy to make up for being so overdue— one specifically geared towards Scoliosis
• Surgery 101: How to mentally prepare for a major surgery, how to prepare for recovery time after surgery.
• Book review of Enemy Within by Karen Ager (a must-read)
• Book review of How to Be Sick by Toni Bernhard (another must-read)
• Announcing my two jewelry lines, one of which focuses on awareness jewelry
• Part II of my College and Chronic Illness: Preparing for School series
• Finally launching The Pre-Med Patient, which has taken a backseat to everything else lately (reilareila, know that I have you in mind :)
• Finishing blogspot layout and custom logo designs
• Post/discussion Painkiller 101 FAQ

And a ton of other great stuff will be queue’d up. As always, please like and share the facebook page with your friends. Spreading awareness and sharing the content of Chronic Curve with others is the goal :) It’s possible that I will be updating facebook after surgery to let friends and family know how things went— another reason to check CC Facebook.

Hope everyone is well,

Tonight one of my friends, who has known about my illnesses for about six months now, thought I had osteoarthritis. Specifically referencing the elderly people on commercials.

I think you can imagine my reaction. Just had to share this with you. After the shock wore off, we had a good laugh over it. Nonetheless, it highlights the issue of how misunderstood and how poorly represented autoimmune arthritis is.

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...

A New Diagnosis

It's been a long day

 

Never stop dreaming.

I Am Completely Bedridden Today

And I am not happy about it. I have so much jewelry to make by the end of the week and this flare is not letting me accomplish anything. So here’s an update:

1. My blood results came back unremarkable— which is GOOD! Despite a low PT (clotting factor), my hematologist gave me the go ahead to schedule surgery (for the fifth? time? I lost count…). My blood will have to be monitored and precautions to prevent blood clots after surgery will be taken.
   
2. I see my rheumatologist on the 8th and I am hoping to get clearance from her.
   
3. More hair loss, constant mouth sores, a pink rash on my arms, and fevers have been spiking higher and higher.
   
4. In two days I will have been off my DMARD and fish oil (helps decrease inflammation for those of you unfamiliar with it) for a month. Today I woke up wondering when my body was literally going to stop functioning in protest.
   
5. I bring my first set of jewelry to the salon next week. I haven’t even put together half of the amount of pieces I need, nor have I printed or designed my business cards yet. Crazy how this is happening so fast.
   
6. I am working on my site for said jewelry, finally after three years of procrastinating building a site (shame).
   
7. Lots of great links coming up in the next week :) I’ve been using my time stuck in bed to find some really wonderful resources to share with you.
   
8. This page is finally slowly but surely coming together and I will post final notice when it is done and updated. I'm currently working on a custom banner, tweaking layout options and issues, and advertising details.
   
9. Facebook page— where I’ll be posting updates, quotes, and articles before they hit tumblr/blogspot. Like it, share it, invite your friends :)

Not the greatest photoshop job, but hey, this works for now!

*Click through link to original image source.

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?"

 "  I am not what happened to me, I am what I choose to become"

                                                                                           -- Carl Jung

 

 

 

 

Some words of wisdom to carry you through the day.
Wishing you well,

Chronic Curve--2011

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!




                                                    

Blogspot is still under massive construction, and I will be taking a small surgical hiatus on Monday, September 19th as I undergo spine surgery (finally). The goal is to get this site up and running by Saturday, so check back in a few days.



                                                       

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!

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.

In the process of a blog makeover, obviously, so expect CC-blogspot to be a little out of sorts for the next week or so. Check tumblr and the facebook page for updates!