Nickie Coby (puppybraille) wrote,
Nickie Coby

Sick Blogs, Patient Pages

Read the article I'll be blabbering about.

I have a lot of thoughts on this. I think, like anything, the internet can really help patients, but it can be used in harmful ways. Trying to make a diagnosis for oneself can be dangerous, especially if one is not comfortable with evaluating sources. It's easy to think
I have that
even when you don't. But the internet can also be a great way for patients to find information that they need, and help patients partner with their doctors.

I've found a few friends with RSD who's blogs I read and who read mine. Like with blindness, RSD may be how we connected at first, but it's not the only reason I keep reading. Sometimes, empathy helps, especially on a really painful day.

I've found sites like
RSD Hope
RSD Alert
where patients collaborate to share stories or experiences with treatments. I sometimes find that these sites give me the information I need to talk intelligently with my doctors.

I've also found
blogs that share information on calls to action, conferences and mainstream articles covering this awful, obnoxious disease.

Even more blogs talk about living with invisible illnesses or chronic pain
visit my blog roll for several examples of such sites.
These blogs give me new ideas and coping strategies that help me with my daily life, or give me ideas on how to explain what I go through.

All of these blogs and sites (and some I haven't mentioned because they are friends-only journals and/or personal and I don't have permission to write about them), help me make decisions and take better care of myself. Sharing my stories of painful days and sleepless nights helps me deal with the pain in a somewhat-more-constructive way. I'm really blessed to have friends who provide advice and a reminder that I'm not alone.

I've been able to partner with my doctors too. Writing starts the thought process of what is wrong that I need to address the next time I go to the doctor. Researching or asking questions in Chronic pain or RSD comunities helps me find possible answers and things I can do to help. I've even found helpful ways of organizing myself for the most beneficial appointment possible. I tell the doctor what's on my mind. I ask for what I need and ask open-ended questions. I've only had one doctor that didn't want to work with me, and haven't gone back since.

I hope that there is more collaboration, more awareness and more interaction in the online community. I know I've experienced so much help and so many people are willing to help, that I want to give back. I know that at times I really should cope better, but I hope that in some small way, my blog will someday give back to the community. And maybe, just maybe, someone will see RSD-like symptoms, be alerted, and get help quickly. I know I am very, very fortunate in that respect. If you count the family physician I saw, I only saw five doctors (the fifth made the diagnosis), before the diagnosis was officially made. According to one survey
40% of patients aren't that lucky.

I think, like anything, it's important to learn to use the internet in safe and beneficial ways. It will never replace a good doctor, and face-to-face interactions can be amazingly helpful for patients. But online sites, blogs and interactions can really really make a difference.

Tags: health, mainstream news, surgery

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