I actually found this on facebook from another fellow lupie. This is interesting because it discusses whether we as patients should become better consumers of our own health. Enjoy and share your opinions…
Healthcare & Social Media: Are e-Patients Crossing the Line?
Tweeter asks: ARE E-PATIENTS CROSSING THE LINE?
What line? Where is the line? In former times the line was malpractice. Honestly, that was the only solution to an inadequate or inept doctor. If a patient had a doctor that did not listen and the patient got even sicker or died as a result, he or his family could sue. It was simple. Everyone knew his role.
Patients asked doctors for answers. Patients paid the doctor for answers. Patients had questions and doctors had answers. If patients were harmed in the process, a lawsuit could be filed.
Today, it’s complicated. Patients who don’t get answers from their doctors can persevere in other ways. They don’t have to accept a suspect or inadequate answer. They can research information online. They can network with other patients. They can conduct online polls on their blogs. And they can search for doctors who are better equipped to manage their cases.
So, where are the lines today? Are patients who read medical journals out of line? Are patients who share their own experiences with others out of line? When do e-patients cross some kind of line of what is acceptable? How do they know when they violate the unwritten law, transgressing into a sacred realm of medical knowledge?
Two ways to look at e-patients
There are two ways to look at the modern scenario. There is the “Us versus Them” mentality where doctors and e-patients square off against one another. They draw lines between “our side” and “their side.” Alternately, there is the partnership model where healthcare becomes a collaboration between patients and doctors. Both have knowledge, one as an expert in his field (the doctor) and one as an expert in himself (the e-patient).
Most patients have their own examples of struggles to get answers from when doctors do not adequately address the concerns of patients. I will use two that affected me personally. I choose them because they demonstrate the dead end of drawing “lines” that sound too much to me like “Don’t drink from this fountain” or “Sit in the back of this bus.”
Two examples of un-empowered patients
My first example came when my husband was entering seminary. Money was tight and healthcare was pay as you go. On a retreat weekend, I experienced a sudden onset of excruciating joint pain I had not experienced before. At first, the pain was in my neck accompanied by redness. I suspected a spider bite since we were in the woods. Large doses of ibuprophen only helped a little. When the pain spread to other joints, the VIP’s at the event became concerned and insisted I seek medical attention.
My visit with the urgent care doctor was short. I described my symptoms and showed him the lacy red rash that covered my legs. He told my husband there was nothing wrong with me. My husband paid him one hundred dollars. I felt powerless to argue.
There was a happy ending: I arrived home to see that my little girl had a red face that looked like sunburn. If you hadn’t guessed it by now, I’m sure that gave it away. I had Fifth disease caused by Parvo virus. Our pediatrician recognized it immediately. The virus resolved without treatment. But I would have been more comfortable with prednisone.
Maybe it didn’t matter that I was embarrassed or spent money I didn’t have to be insulted by an incompetent doctor who did nothing to make me more comfortable. However, a similar scenario ended tragically. My grandmother was in a car accident when I was young. When the emergency room doctors released her as healthy, she continued to experience pain. When she returned repeatedly, she was assured that she was only upset. My grandmother was bleeding internally. She didn’t recover. My family sued.
I believe that her story could have ended differently today. I believe that the bright woman could have been an e-patient if she had the opportunity. It was not a door she could have opened herself, but she could have walked through it the same as hundreds of women I see on my blog or Facebook every day. None of the doctors viewed my grandmother as a partner in her treatment. Her assertions went unheeded. Doctors and patients who are leading the way today toward patient empowerment are working to change sad endings like that.
So, are e-patients crossing the line?
I don’t believe e-patients want to usurp the role of doctors. They just want to get well – or see their loved one live on. Certainly patients should trust doctors’ judgment, but some doctors got C’s in medical school or are too busy to read the latest study or just have poor listening skills. Collaborating with patients could make them better doctors.
Are e-patients crossing the line? If so there will there be new lines. I think the roles are changing. I wear the e-Patient label proudly – for the time being at least. I don’t care what we are called – as long as we can be partners.
Kelly Young is the author of the Rheumatoid Arthritis Warrior website. Kelly’s e-patient story is on e-patients.net. Her Twitter is @rawarrior.
Note: The link it the Tweet referred to a blog written by Martin Young, MD. I do not believe that Dr. Young meant to imply that patients are crossing lines inappropriately by being e-patients. I take him at his word when he states that he supports e-patients as a concept and as individuals. He has personally been supportive of me and my work as a patient advocate. I have had discussion with him and I do believe that he is honestly concerned for our welfare as patients.
I am writing this post because I have become overwhelmed with stress lately. Big dramas in our family, big sicknesses, big deaths, I mean, it has been some few months lately. I tried to take a time out day and turned my phone off and all that, but they found me! It ended up being more stressful than if I were not having one (a time out day). So, in the interest of research, I went looking for something about lupus and stress. Here’s hoping your stress is mild and short duration… I would just like a smaller load please…
This first bit is from the Womens Health Zone.
Lupus Flare-Ups Brought On By Stress
It is known that women who have Lupus can experience flare ups due to stress. Lupus symptoms normally include fatigue, stiffness, joint pain, fevers, or a general lack of well being. When stress is experienced, these symptoms can become worse, or flare up.
You may be feeling perfectly fine and then one stressful episode will throw you into the throws of several lupus symptoms. Doctors are learning that stress has a significant impact on the disease.
For this reason many doctors are recommending stress management as a treatment to alleviate lupus symptoms.
While stress may or may not be a direct cause for lupus it is widely believed that it does have an impact on the quality of life Lupus patients experience. While stress cannot always be eliminated from daily life, it is possible to reduce it.
In order to live a healthy lifestyle, with less symptoms of lupus, you should try to learn stress management techniques, and reduce or eliminate stress triggers from your life.
You may find that exercises such as yoga or meditation can help to reduce stress levels and therefore reduce the symptoms of lupus.
From the website about.com comes this information:
Daily Stress Must Be Managed in Lupus Patients
Monday September 3, 2007
I am repeating this post because, believe it or not, while I was at the doctor’s office today, the Arthritis Today magazine had an article about pets and arthritis. Ironic, but I figured it made for a re-posting of this older post. Enjoy!
I have a cat. Her name is Shelby. She was a foundling who adopted me. She is also so much more than just a feline friend.
Shelby has an intuitive nature that allows her to see when I am ill and respond to me. When I am in bed, like now, she is laying next to me. When I am asleep, she lays either next to me or above my head. Some days, she is not around and that is usually when I am feeling good. She goes about her business as she normally would do.
When my lupus is acting up, though, she is right by my side, purring and rubbing on me and trying to help me feel better. It is uncanny, (or should I say, uncatty) how she knows without me saying a word, that I feel awful. She is not overly in my face, but she is on the periphery should she be needed.
While my cat is unique, she is not the only one who is intuitive. I read a story a few years back about a nursing home that had “adopted” a stray cat. The cat was allowed to roam the halls and “visit” with the residents. This cat had an intuitve nature too. It was discovered that the cat would go to a particular resident who was imminently ready to pass away. When a resident was at this point, the cat could not be coerced to leave the room of the resident. It would stay until the person passed away. It became noticible to the staff and they would know by the cats behavior, whether there was an impending death or not. They felt that the cat didn’t want the person to be alone, so it would stay on the bed with the person until after they passed.
I also saw a story about cats and patients with AIDS. The story said that those patients who had cats, tended to live longer than those who did not have a pet cat. Cats were the pet of choice because they did not require as much work as dogs and chronically ill people may not be able to give a dog the exercise they need. Who knew?
So, my Shelby has this same empathy, but for me. She has been a true and loyal friend in my down times and always helps me with her presence. She is not a “talker” type of cat, but she is always here, by my side, when I need her most. She does not judge me, or make me feel I am worthless when I cannot do things. She is just here, faithfully, making me fell loved.
Funny that a cat can do that and so many humans can’t. We should take a lesson from the animals on this one!