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Archive for the ‘autoimmune’ Category

A nice perk of my job is that I am allowed to listen to music or the radio on my headphones to tune out everything going on around me so I can focus on what I need to get done.

Instead of opening up Pandora, Spotify, or iTunes first thing in the morning, I head over to NPR.org. By the time I arrive at work, the day’s recording of Morning Edition is available online. For some reason, listening to voices speaking instead of music or singing feels a lot more comfortable to me when I’m working. And obviously, I learn a lot that I wouldn’t otherwise: from politics, to random interesting stories, to heart-breaking StoryCorps interviews, to recent research updates.

While listening to yesterday’s show (since I wasn’t in the office for Labor Day), there was a story about Chronic Fatigue Syndrome, commonly just called CFS. The two short segments were focused on how researchers still don’t know why people with CFS experience pain, exhaustion, anxiety, insomnia and so many other symptoms. It’s a hard disease to diagnose, and can be misconstrued as stress-related, extreme anxiety disorder, dehydration, a hormone imbalance, and I’m sure a thousand other things. The people interviewed, including those diagnosed with CFS, doctors and researchers, all brought focus to how life-changing this and other related diseases can be, and how there is no known cause or fool-proof form of treatment. Hopefully things will change soon, with new research and papers on CFS being released at the end of this month.

The thing that really stood out to me in the NPR story was something that interviewee Cynthia Johnson, who has CFS, said that disbelief makes the disease worse. She also is a breast cancer survivor.

People really admire you for fighting cancer, and they’re very excited that you survived. They congratulate you for surviving. Nobody does that, day to day, for CFS. They are just like, oh.

To those that don’t have these types of diseases, it’s hard to truly understand that anything could be wrong if you “don’t look sick.” One of the main symptoms of Lupus is also fatigue. Before I was diagnosed and began treatment, I was extremely tired without any explanation. I mean the cannot get out of bed, cannot walk to the next room to get a meal kind of tired. It was difficult to tell people, and still is, that I sometimes have to head home early because I’m “just tired.” At times it is from a lack of sleep, or a long weekend of travel, but other times it’s more than that.

Sometimes I need to just focus on taking care of myself and not worry when people seem a little miffed if I head home early. Not everyone understands, but I hope someday they will understand all of us that are affected by these types of chronic, invisible illnesses.

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a place to start

Everyone “wants to write” and “wants to start a blog” and apparently the favorite fact about contestants on the bachelor and bachelorette is that they “love to travel.”

Because I just want to be cool like everyone else, I decided to start this little blog. I have made pretty lame attempts before, but nothing really stuck. There are a few things about me and my daily life that I could write about.

It could be about food and cooking and wine. Because I love all those things and indulge in them on the daily.

It could be about Virginia Tech and being a Hokie. Because that is also something I clearly need another outlet for in addition to plastering my cubicle, car,  self, and twitter feed with all things Maroon and Orange; yes, they are proper nouns.

It could be about doing super fun awesome things in DC. Although, due to the fact that I live here, everything I do is automatically a super fun awesome thing in DC (& the surrounding area, since I actually live in Virginia). DC residents have a silly habit of getting all peeved when people claim to be from DC when they dont actually live in the District itself. Trust me, I used to be one of them.

It could also be about the effect that Lupus has had on my life. I was diagnosed on my 22nd birthday coincidentally. As a quick and friendly overview, Lupus is a chronic, autoimmune disease that can damage just about any part of the body. For something to be chronic it has to lasts over an extended period of time, and perhaps forever. I chose Chronic as one half of the title of this blog, since it encompasses a little something about me (the fact that I have a chronic illness) and a little something about what will hopefully be this whole blogging journey: it’s continuous.

I guess I have to start somewhere,  right?

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