Well, a great news day! I woke up feeling lovely and wonderful! Amazing even! Scary, isn’t it? You see, for those who don’t know, I am in a particularly bad flare lately and it has been brutal. Pain has been out of control. Depression has been a close second. I have prayed and vented and almost given up at times. Out of the blue, I get a day like today and it gives me the strength to endure the onslaught of the wolf again.
In the interest of helping others, who are virtually housebound in pain, I will repeat a previous post from my archives that discusses the necessity of social networking for those who are chronically ill and cannot get out much.
Most of the people who are chronically ill are not able to afford even a computer, statistically, but to those of us who do have one, it can be a blessing. Yous ee, we can reach out and discuss our diseases knowing that our pain is being felt or has been felt, by those we know online. It is nice to be able to vent and share with others who are also in our journey. So, in the interest of all of us who are chronically ill, I will repost this one. I am also reposting one of my posts about the lupus community as well. Thanks for indulging me. Enjoy!
The Lupus Community
Many of us have friends, some life long and others shorter term. One of the things that bind us as friends, is a commonality of something. Call it a community of sorts. I have several of these communites in my life. The one I am going to talk about today is the Lupus Community.
I have lupus. This can be a devastating thing that can overwhelm you when you are first diagnosed, and leave you shell shocked for some time. After the intial shock wears off, the knowledge phase kicks in, namely, where you research and learn more about this disease and its effects on your life and family.
It is during this phase that many of us have found a surprising community of folks who have been there, done that and now help others just like themselves. I call this the Lupus Community.
Now, to be certain, you would think that to be great friends would require seeing each other daily, talking on the phone, and sharing life’s events. Yes, that is true. In this community though, we do all of the above with tthe exception of seeing each other in person. We “see” each other online.
In this community, we can share things that we would not tell others. We can be honest, and discuss the way this disease has affected our life, warts and all. We can be brutal in our descriptions of certain manifestations of the disease and feel free to express our innermost feelings without fear of judgment or belittling that many “normals” sometimes do inadvertantly. If we are depressed, we can tell others and know that they will lift us up and help us to get through it. It is a community of others who are dealing with many of the same issues that are difficult to describe to those who are not ill. We laugh at our jokes and inadequacies, we cry when we lose a friend, we rejoice in remission, and we commiserate in our pain. We share links with information and discuss various clinical trials and developments as well as improvements in care and even good doctors versus bad doctors.
In the end, it is a community of caring, intelligent individuals who share a commonality of an incurable disease and who are living with it each and every day. When those closest to us get tired of hearing our complaints, this is the community that will help us and bolster us as we survive each day and keep the wolf at bay. It is a sounding board for us to vent and scream, to cry and laugh, to share and care. We cross all socioeconomic boundaries, all races and religions, and all countries across the world. We speak different languages and have different colors of skin. Underneath it all, though, we share the wolf. We fight it as one, and never give up on each other. We are men and women who share this unique bond. We are young and old, we are survivors one and all.
I am blessed to have found this community and to share it whenever I can. Yes, I may have in incurable disease called lupus, but, and here is the difference, lupus does not have me! I am a lupus survivor! I share this distinction with many millions earthwide! We will fight until our last breath each of us! If you are newly diagnosed, please join in the lupus family and you will feel the love and caring that I have experienced…
See, I am indeed blessed…
I found this article from the NY times and thought it relevant so enjoy!
By CLAIRE CAIN MILLER Published: March 24, 2010
A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline.
For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role. “It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.
People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation. “If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report. They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.
Sherri Connell, 46, modeled and performed in musicals until, at age 27, she learned she had multiple sclerosis and Lyme disease. She began posting her journal entries online for friends and family to read. Soon, people from all over the world were reading her Web site and telling her they had similar health problems. In 2008, she and her husband started a social network using Ning called My Invisible Disabilities Community. It now has 2,300 members who write about living with lupus, forthcoming operations or medical bills, for example.
“People have good and bad days, and they don’t know a good day’s going to come Wednesday at 5 o’clock when a live support group is meeting,” Ms. Connell said. “The Internet is a great outlet for people to be honest.” Not surprisingly, according to Pew, Internet users with chronic illnesses are more likely than healthy people to use the Web to look for information on specific diseases, drugs, health insurance, alternative or experimental treatments and depression, anxiety or stress. But for them, the social aspects of the Web take on heightened importance. Particularly if they are homebound, they also look to the Web for their social lives, discussing topics unrelated to their illnesses. Some schedule times to eat dinner or watch a movie while chatting online.
John Linna, a pastor in Neenah, Wis., did not know what a blog was when his son suggested he start one after discovering he needed to stay home on a ventilator. “That day my little world began to expand,” he wrote in a post last year about blogging. “Soon I had a little neighborhood. It was like stopping in for coffee every day just to see how things were going.” When Mr. Linna died earlier this year, people all over the Web who had never met him in person mourned the loss.
Others use the Web to find practical tips about living with their disease or disability that doctors and family members, having not lived with it themselves, cannot provide. On Diabetic Connect, a diabetes social network with 140,000 members, people share recipes like low-sugar banana pudding, review products like an insulin pump belt and have discussions like a recent one started by a patient with a new diagnosis. “I don’t like to talk to my family and friends about this,” she wrote. “Honestly I feel helpless. I really just need some advice and people to talk to who might have been experiencing the same things.”
Amy Tenderich is the community manager for Diabetic Connect and writes a blog called Diabetes Mine. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”
Patients often use social networks to interact with people without worrying about the stigma of physical disabilities, said Susan Smedema, an assistant professor of rehabilitation counseling at Florida State University who studies the psychosocial aspects of disability. From her home in Maine, Susan Fultz plays online games at Pogo.com and commiserates with people who are frustrated that they do not have a diagnosis for their symptoms. “There’s no worry of being judged or criticized, and that is something that I know a lot of us don’t get in our daily lives,” said Ms. Fultz, who has Lyme disease and psoriatic arthritis.
Those with chronic diseases or disabilities, like all Internet users, have to be wary about sharing private health information online, particularly with anonymous users. Research has also shown that emotions can be contagious, said Paul Albert, digital services librarian at Weill Cornell Medical Library in New York who has researched how social networks meet the needs of patients with chronic diseases. “If you hang out on a message board where people are very negative, you can easily adopt a negative attitude about your disease,” he said. “On the other hand, if people are hopeful, you might be better off.”
Some people also worry that patients might exchange erroneous medical information on the Web, he said. Yet most patient social networks make clear that the information on the site should not substitute for medical advice, and the Pew study found that just 2 percent of adults living with chronic diseases report being harmed by following medical advice found on the Internet. Instead, the sites are used to share information from the front lines, said Lily Vadakin, 45, who has multiple sclerosis and works as a site administrator for Disaboom, a social network for people with disabilities.
For instance, she has discussed with other patients how to combat fatigue by working at home and taking vitamin supplements. “That’s what the community can give you — a real-life perspective,” she said.
A version of this article appeared in print on March 25, 2010, on page B3 of the New York edition.