Stop and take a moment of your time to sign this. This is one petition that needs your signature. For anyone who has ever been called a hypochondriac when they were suffering, for anyone whose pain has been deemed illegitimate and invalid, for any woman who has ever been told they are hysterical, hormonal, or crazy — this petition is for you. Women, sign this to make your voice heard. Men, sign this and show your support for your sister, your mother, girlfriend, peer, whomever.
"To: The Medical Community of the United States From: Women In Pain
Stop the bias which prevents the ethical and equal treatment of women with chronic pain diseases – now. Women in this country have for years suffered from a destructive bias and prejudice by the medical establishment when it comes to the assessment and treatment of their chronic pain conditions.
All too often, their pain reports are discounted as “emotional,” psychogenic or “all in their head,” and therefore, not real. Women for their complaints of chronic pain are often prescribed sedatives to “calm their nerves” while their male counterparts are prescribed painkillers…”
Surgical Hiatus (hopefully without further cancellations)
I was too exhausted to really do anything today, including fill up the queue with a ton of posts, so there will only be three or four until I return and I’m really not sure when that will be. I’ll update the facebook page when I am first able to after surgery.Hope everyone has a great week :)
"Many autoimmune diseases display a striking imbalance between the sexes, with females representing the majority of cases. Thus, autoimmune thyroid diseases, multiple sclerosis, and many of the rheumatological systemic autoimmune diseases such as Systemic Lupus Erythematosus and Sjögren’s syndrome affect women more often than men […] This is also true for rheumatoid arthritis (RA), where the sex ratio is typically around 3:1…"
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.
lots of great articles and information on the way.
I also added a new page where I’ll be listing national and international organizations dedicated to various chronic illness and pain related causes. They’re valuable resources to be aware of, and hopefully they will help someone.
"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.
Weekly Link Roundup 09/22/2011 -- Scoliosis Edition
In light of my scoliosis revision surgery, this week’s roundup focuses on the spine.
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.
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.
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!
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.
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 blogs you read and health activists you follow cannot diagnose you or give accurate medical advice tailored to your body and medical situation. 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.
Before I started Chronic Curve, I was following two scoliosis-related tumblrs with similar goals to CC. It wasn’t long before I realized they were run by very young girls who were soliciting medical advice, diagnoses and cures (a cure for scoliosis does not exist, fyi) to other fourteen year old girls who were clearly impressionable and taking their advice very seriously. One blog author explained to another follower that seeing a surgeon for a second opinion was unnecessary, as drinking “lots of milk” would increase calcium and “fix” her spine. The recipient of that advice took it seriously.
Aside from the fact that I don’t believe it’s appropriate for pre-teens to be giving out medical advice on the internet, the situation represents a larger issue that comes with internet usage and sites like WebMD. The internet is not your doctor and cannot replace your doctor. If you dislike your doctor, please find another one, but don’t replace your physician with an internet resource.
Everyone has a different body with different physiology, a different past medical history, different genetics, different external factors affecting one’s health, different states of mind, and different doctors! You simply cannot compare your entire assortment of symptoms with those of another user name via internet. They are not you, they cannot be you, and while their advice might be valuable, they cannot replace a physician.
WebMD causes panic. Have a headache? You’ve got a tumor! Stomach ache? Tumor! Swollen limb? Blood clot! A pharmaceutical-run web database cannot examine you and your lifestyle like a licensed physician can on an examination table.
So what can you do to stop others from advocating pseudoscience or harmful incorrect information on tumblr?
Bring it up! Nine times out of ten, the author truly believes in the information they are advocating and may not realize their blog’s audience and the profound effect the content may have on a young impressionable follower. Raise the question “Hey, I know you mean well, but ________. Just a heads up, food for thought.”
Cite your sources. Before advocating a treatment or soliciting advice, point your follower or whoever is asking the question in a direction of a source or various resource that can further answer their questions, and then encourage them to seek out a professional opinion.
Use a disclaimer. If you run a blog like mine, add a small disclaimer explaining the intention of your blog. If a follower asks you for your opinion on their diagnosis, or asks you FOR a diagnosis, go ahead and give them food for thought or send them a valuable resource, but remember to explain to them the importance of seeking out a professional opinion, and explain why they cannot compare their physiology to yours.
The resources shared on Chronic Curve are for your own general interest, whether that interest be in understanding your symptoms, learning about new research, or connecting with others. I share resources in hopes of offering them to others, but I refuse to advocate cures and I never post content without sources. I am not a doctor and am NOT qualified to tell you what is wrong with you. I hope that if there was ever a question about a post of mine that any follower would ask or voice their concerns to me via email. I can only discuss what worked for me, offer what worked for me to you, and encourage you to take that information and use it as a platform to build off of.
Take what you read or learn to form questions or ideas and bring it to a physician (or multiple, however many opinions you want). That is what Chronic Curve is for— it is a building block in one’s journey, sharing of resources and coping skills, sharing my own journey to inspire or connect with others, but the end all be all of your medical mystery does not occur here. It should occur at the hands of a physician who went through years of arduous education and training who took an oath to help you.
And if I ever see anyone on here advocating large quantities of milk as a cure for scoliosis, you will be hearing from me.
Wishing everyone well,
*Not sure what it is about this layout but my texts always need serious html editing. Obviously I’m in the hospital and this post is queued, so if it is obnoxious to read, sorry! I’ll fix it eventually.
Just spent three hours with my spine surgeon…who we kind of bombarded without an appointment. I’m sure his office staff thinks we’re 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,
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 :)
FINALLY! A Rheumatoid Arthritis Patient Foundation, SEPARATE from an “Arthritis” organization. RA is not arthritis. We’re making bounds and leaps here! 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."
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. 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! Wish me luck and talk to you all in a week or so,
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!
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.
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.
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!
Surgery on Monday the 19th! What you can expect while I'm on my surgical hiatus:
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. 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.
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. (sorry Cara <3 I had to).
I think you can imagine my reaction. Just had to share this with you guys.
Blog Etiquette: I'm going to say this once and only once:
I really should not even have to say this, but I feel it is necessary.
If I see you copy/pasting entire pages worth of personal content from this website and claiming the personal posts as your own, I am going to call you out on it. If you are not sure whether or not it is appropriate to distribute content, please shoot me an email or read the disclaimer. My personal posts come from my heart. They are to be shared (hello? that’s the whole point of Chronic Curve— sharing resources), but not stolen, no matter how deeply the words resonate with you.
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:
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.
I see my rheumatologist on the 8th and I am hoping to get clearance from her.
More hair loss, constant mouth sores, a pink rash on my arms, and fevers have been spiking higher and higher.
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.
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.
I am working on my site for said jewelry, finally after three years of procrastinating building a site (shame).
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.
ChronicCurve.blogspot is slowly but surely coming along and I will post final notice when it is done and updated.
Facebook page— where I’ll be posting updates, quotes, and articles before they hit tumblr/blogspot. Like it, share it, invite your friends :)