It was really hard for me to tell people about what was going on with me in 11th grade. People would write on my Facebook wall asking me how I was feeling and when I was coming back to school and I never knew what exactly to reply. I wanted to express how I was feeling in a much deeper way than Facebook would enable me to. I didn't want to post all my health information in public, but I even felt uncomfortable sending private messages. How can anyone ever know what exactly you are trying to say over a message? If I type a message to someone on Facebook and say, "I got a spinal tap today, an IV, and now I'm feeling worse than ever", it may sound like I am feeling bad for myself. It also didn't really help me much when I typed out a response to someone's question about how I was feeling. In order to feel any different after, I needed to actually verbally speak to them. I felt more comfortable doing this, and it actually had positive affects on my mood.
Monday, October 31, 2011
How Do I Tell People I Have an Auto-immune Disease?
Is there any right time to tell someone about your autoimmune disease? This is one of the hardest parts about living with a disease that only flares every so often. It's important that people are aware of what I have, but it's hard to know when exactly to tell someone. I want people to know about it but if I talk about it to someone, I don't want them to think I am trying to get them to pity me for it or something. There's just a comfort in knowing that the people around you are somewhat aware of it.
Monday, October 10, 2011
Longevity Project
An interesting study, that has been researched since 1921, was finally published about longevity. Longevity is the length/duration of life and scienticists want to know what it is about the 1500 grade school students that led some to stay well and some to die or get sick. Scientists Howard Friedman and Leslie Martin continue the research that first began in 1921. There are so many findings in their book and it would be difficult to name all of them, but I will talk about a few.
They found that many people who worked the hardest in their lives lived the longest. Most of the people still alive continue to work part-time or are still involved with their hobbies or profession. They found it isnt the "happy-go-lucky" who survive, but it is the people who are persistent and responsible who live the longest. Certain factors were found to increase the risk for cancer and violent deaths. These included stressful home life, lack of exercise in the middle and older years, radiation, and smoking. One really interesting thing they found was that having a strong social network was found to contribute highly to increased longevity. They also found that women are more likely to have a social support system than men and this may be why women tend to live longer. What counts is not how much you feel loved, but how much you feel needed.
The idea that social networking is more about being needed than loved is interesting. I guess they are saying that you could be loves by a few people, but they could die, move away, or just lose their capacity to care for you. When you take care of others though, you are likely to make and keep friendships throughout life. It's not like if you are social and have a facebook you will live a long time. What this study revealed is that social ties are critical and that having a large support network is directly correlated with a longer life. Facebook and blogging are both social networks that allow you to help and care for others. Social networking sites are not there so people can feel loved. They are there so that we, members of the public sphere, can help and care for others.
More and more adolescents are using the internet nowadays, and it would be interesting to see if there is any correlation between this and the length of our lives. After reading this study, it would be easy to think that Facebook and blogging might add years to your life, but I think it could be the opposite. After reading Turkle's "THe Nostalgia of the Young", I know that social networking sites pose problems for adolescents' social connectedness and well-being. Texting and instant messaging cause your attention to be elsewhere, and so the connections you are making with people are not very strong. Many people may be physically close, but mentally they are not, because they are focussed on connecting with others. This leaves the other people feeling excluded and unneeded. It is hard to care for others and form strong connections with them when they are distracted by their devices. To some people, digital life cheats people out of learning how to read a parson's face and how to be authentic. I am no scientist, but it would be interesting to examine the affects of cell phones and the internet on longevity.
They found that many people who worked the hardest in their lives lived the longest. Most of the people still alive continue to work part-time or are still involved with their hobbies or profession. They found it isnt the "happy-go-lucky" who survive, but it is the people who are persistent and responsible who live the longest. Certain factors were found to increase the risk for cancer and violent deaths. These included stressful home life, lack of exercise in the middle and older years, radiation, and smoking. One really interesting thing they found was that having a strong social network was found to contribute highly to increased longevity. They also found that women are more likely to have a social support system than men and this may be why women tend to live longer. What counts is not how much you feel loved, but how much you feel needed.
The idea that social networking is more about being needed than loved is interesting. I guess they are saying that you could be loves by a few people, but they could die, move away, or just lose their capacity to care for you. When you take care of others though, you are likely to make and keep friendships throughout life. It's not like if you are social and have a facebook you will live a long time. What this study revealed is that social ties are critical and that having a large support network is directly correlated with a longer life. Facebook and blogging are both social networks that allow you to help and care for others. Social networking sites are not there so people can feel loved. They are there so that we, members of the public sphere, can help and care for others.
More and more adolescents are using the internet nowadays, and it would be interesting to see if there is any correlation between this and the length of our lives. After reading this study, it would be easy to think that Facebook and blogging might add years to your life, but I think it could be the opposite. After reading Turkle's "THe Nostalgia of the Young", I know that social networking sites pose problems for adolescents' social connectedness and well-being. Texting and instant messaging cause your attention to be elsewhere, and so the connections you are making with people are not very strong. Many people may be physically close, but mentally they are not, because they are focussed on connecting with others. This leaves the other people feeling excluded and unneeded. It is hard to care for others and form strong connections with them when they are distracted by their devices. To some people, digital life cheats people out of learning how to read a parson's face and how to be authentic. I am no scientist, but it would be interesting to examine the affects of cell phones and the internet on longevity.
Wednesday, October 5, 2011
What Exactly IS an Autoimmune Disease?
Most people really don't know enough about autoimmune diseases. Actually, I don't even know enough. People ask me what I have everyday and it's too complex to explain. That's one of the hardest parts about living with an autoimmune disease. I can't explain to people what I have because I don't even know what that is. The first 5 times I got sick, all I knew about my condition was that my immune system was so overactive that it shut down. People would ask more about it, and that was literally all I knew. In 11th grade though, people would ask me, and I realized I should probably know more about what I was living with. I read a lot of articles and learned about general autoimmune disorders. I couldn't research what I had, so I started researching as many conditions as I could.
Before I talk about any of the diseases though, I think everyone needs to have a general knowledge of autoimmune disorders. They lie in your DNA, and they occur when the immune system mistakenly attacks and destroys healthy tissue in your body because it can't tell the difference between healthy tissue and antigens (bacteria, viruses, toxins, etc.). Scientists haven't discovered yet what causes the immune system to no longer tell the difference between healthy body tissues and antigens. An autoimune disorders may result in destruction of one or more types of tissue, abnormal growth of an organ, changes in organ function. The most common organs and tissues affected are red blood cells, blood vessels, connective tissues, endocrine glands (like the thyroid or pancreas), musclesm, joints, and skin; however, there are more than 80 autoimmune diseases and the symptoms vary.There are many different tests, but the treatment is usually corticosteroids (like predisone) and nonsteroid drugs. I took prednisone and it helped, but I was miserable the entire time I was on them. I was taking 80 mg a day and I got to decrease by 10 mg every monday. At least that caused the week begin well, I guess!
It's okay to not know about the specific auto-immune diseases, but I think everyone needs to know what causes them in general and what happens in the body of someone who has one. There are blogs and discussion groups online filled with people who discuss recent articles about autoimmune diseases, talk about their personal stories, and help others who are living with one of the disorders. These people come together in these blogs and discussion pages to talk about what they don't get to talk about enough. Barlow says that "blogs create a fictional world and activity centers on that world in a way that may prove unlike anything we have seen before"(Barlow, p. 5) These discussions do that too. Living with an autoimmune disease is hard because you want people to know about it but you dont want it to be how they view you, and most people usually don't want to go around telling everyone about it. When I was sick, I never posted anything in the discussion, but just reading it made me feel better. The blogs and posts by others showed me that other people live with similar conditions as I do.
Before I talk about any of the diseases though, I think everyone needs to have a general knowledge of autoimmune disorders. They lie in your DNA, and they occur when the immune system mistakenly attacks and destroys healthy tissue in your body because it can't tell the difference between healthy tissue and antigens (bacteria, viruses, toxins, etc.). Scientists haven't discovered yet what causes the immune system to no longer tell the difference between healthy body tissues and antigens. An autoimune disorders may result in destruction of one or more types of tissue, abnormal growth of an organ, changes in organ function. The most common organs and tissues affected are red blood cells, blood vessels, connective tissues, endocrine glands (like the thyroid or pancreas), musclesm, joints, and skin; however, there are more than 80 autoimmune diseases and the symptoms vary.There are many different tests, but the treatment is usually corticosteroids (like predisone) and nonsteroid drugs. I took prednisone and it helped, but I was miserable the entire time I was on them. I was taking 80 mg a day and I got to decrease by 10 mg every monday. At least that caused the week begin well, I guess!
It's okay to not know about the specific auto-immune diseases, but I think everyone needs to know what causes them in general and what happens in the body of someone who has one. There are blogs and discussion groups online filled with people who discuss recent articles about autoimmune diseases, talk about their personal stories, and help others who are living with one of the disorders. These people come together in these blogs and discussion pages to talk about what they don't get to talk about enough. Barlow says that "blogs create a fictional world and activity centers on that world in a way that may prove unlike anything we have seen before"(Barlow, p. 5) These discussions do that too. Living with an autoimmune disease is hard because you want people to know about it but you dont want it to be how they view you, and most people usually don't want to go around telling everyone about it. When I was sick, I never posted anything in the discussion, but just reading it made me feel better. The blogs and posts by others showed me that other people live with similar conditions as I do.
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