COM0015: Blog Post #1 – Tools & Sources

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Access has never been easier…

What *is* the point of social media if one doesn’t take the appropriate effort to listen and monitor for the topics they hold close to their business, organization, blog or website?

Admittedly, I feel no shame in articulating just how frustrating I have found in my endeavours in finding various tools and sources that will work the best for *me.* I’ve discovered during the course of my lessons and previous courses, themselves, that not all suggestions that have been made available would be worth serving a blogger, like me. That said, I’ve also discovered that the few methods to monitor trends applicable to a health and Lupus advocate are invaluable, provided the effort is actually made to continually monitor said tools and sources!

I am sorely lacking in the structure needed to fully broaden my listening and monitor capabilities.

From those I do use for my personal web-blog for Lupus and health advocacy, Hootsuite has been a virtual one-stop-shop across my laptop screen for the production of the trends I seek. I am able to set up #searches that streamline the incredibly vast amount of health information into columns that are directly applicable to me. I can also keep track using the app on my mobile phone, which is handy in times of a quick brainstorm of tweets that I can schedule as I think them up. Tailoring my dashboard also allows me the benefit of modifying and adapting to new trends as I see them.

One of my immediate frustrations in my attempt to try to find what works best for me isn’t only the volume of apps and programs to try but invariably the limitations that “free” tools provide without having to upgrade to a pro-type account. It prevents a user, aka me, from seeing just how full a monitoring tool the program could be to the average user.

Google Alerts is only a recent addition to my repertoire of tools in my social media toolkit. Again, like any other program/app, the value is directly correlated to the effort provided to reading them. I have set up a bookmark right at the top of my browser to be able to open the search as I sip my morning java. It is a simple, and free, user-friendly program that is customizable to my basic understanding of monitoring. The emailed alerts absolutely work for me because though I acknowledge the need to improve my monitoring schedule, I certainly check my emails!

Over the past several months I find I have had a success, of sorts, with using Feedly as a source for my most recent news and updates to the topics I hold dear. Lupus, Xbox, the like. *grin* I can appreciate that when I open the program, “the most popular stories in your feedly today” comes into view with amazing content applicable to me, because I chose it. Though, I still have to caution myself to properly structure the time necessary to peruse through the various saved feeds.

Still, I do like the simplicity of going to an actual news site in order to keep up with current trends and topics in the health community. Specifically, Canadian news sources such as CTV and CBC provide me with the content that brings value to my dedication to providing my readers and followers with up-to-date Canadian content in an advocacy world that sorely lacks our geographical perspective.

I have to stress that I’m not above using a paid monitoring program but what I lack is the up-to-date knowledge in a Web2.0 that is saturated with those tools vying to be the best and greatest. Do you feel limited by the free versions that currently are popular? Or, would you invest in the opportunity to find a fuller, more engaging, monitoring tool? Let me know!

 

 

COM0014: Blog Post #1 – Abide, Dude.

“What I Did on My Vacation”

Being an on-my-own, business entrepreneur, non-profit organization co-founder AND mother of five, I had to Google the word, “vacation.”

va·ca·tion

vāˈkāSH(ə)n,vəˈkāSH(ə)n/

noun

  1. NORTH AMERICAN

an extended period of recreation, especially one spent away from home or in traveling.

“he took a vacation in the south of France”

synonyms: break, time off, recess, leave, leave of absence, furlough, sabbatical, spring break

Ah. I see. THAT, I can do within the chaos of my made-for-tv-movie kind of life!

I take myself and some of the younglings camping at a friend-owned campground just a stone’s throw past Eganville, Ontario, called Raven’s Knoll. For me, it’s a place of healing, both in the re-connection with the nature around me, but spiritually and emotionally. “RK,” as it’s referred to, is a place for me to reconnect to the people, places and things that bring my health-addled carcass a reprieve from the chaos of the Cosmos. As a global health advocate for the disease, Lupus, I regularly encourage and engage my community to make a choice. Good or bad, right or wrong, to step up to the proverbial plate and “Do.”

Me? I choose to go camping and make a memory. “How to Make a Memory”, on Lupus Interrupted, illustrates the importance and meaning of this choice.

Abide

The word is, “Abide…”

One of the most liberating and playful events I’d attended last summer was LebowskiCampFest, a camp out where attendees commune with the “wisdom” of the movie, “The Big Lebowski.” I find attending is one of the very few times I allow myself the freedom and the escapism to play and let go of all the confinements and limitations that managing a chronic disease entails. There was meditation to whale songs under the stars. True story. There was aerial zip-line painting. There was the tossing of the ringer, a retro suitcase filled with underthings. There was a well-articulated eulogy for Donny and the scattering of the “cremains,” (ashes taken from the previous nights’ bonfire!).

“But…..why?”

Because, I can. More importantly, because I make the CHOICE to “Do.” no matter the limitations or boundaries imposed by a disease I have no control over. Choice? I absolutely have control over my ability to choose.

You can find check out the inaugural year of LebowskiCampFest HERE as articled in The Dudespaper.

Do you have a fandom that you chose to regularly participate in? More than one? Eleventy-billion of them? Let me know your geeky preference in the comments! And keep on abiding, Dude. \m/

COM0011 Blog Post 6: Of Choice & Posts

One of the biggest lessons that I’ve learned to date, endeavouring to solidify my understanding of social media as it applies to a health advocacy blogger, is ”choice.”

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Blogging since 1977. Sort of. Well, it certainly can feel like it!

I write. I write well. Maybe not in a grammatically structured, Oxford comma kind of way, perhaps. I write in a way that relates to the plethora of patients around the world: Real. Raw. Peppered with colloquialisms and metaphors, sarcasm and wit.

I’ve spent the past five years growing my brand, “Lupus Interrupted.” So, where do I go from here? As my meager analytics tell me, it must grow up, so to speak. My life, however, provides a different challenge: Time. I find I have so many big plans in my head, but very rarely do I input said plans into the chaos of my reality. It’s time to change that. My biggest tool?

Choice.

Time means nothing if you cannot manage it. We all have it. Our priorities and focus, however, define time differently to each of us. Therefore, I need to make a schedule and I need to choose to stick to it. I’ve participated in blogging challenges and made use of my WordPress editorial calendar. Then, I stopped. No other reason than I simply did not CHOOSE to continue.

Pull up the pants, then, I would say. Grow some fortitude, indeed. I have an aggregate of newly-learned tools at my disposal (analytics, platforms, communities) and the only thing smothering the growth of not only the blog, but of my brand itself, is actually ”owning it” and making realistic use.

So, how does a self-employed, solo-parent of five CHOOSE to continue to grow a brand?

  1. Schedule. Editorial calendars to nailing down a per-day time of use.
  2. Intention. Nothing speaks success as believing in it enough to manifest one’s reality.
  3. Pick the battles. Opportunity cost. If I plan to blog, it will come at the choice over something else…laundry, coffee (no, not really), cleaning, etc.
  4. Smaller pieces. If I find the concept of a consistent posting overwhelming, I must strategize, perhaps, peppering my posts with smaller, bite-sized pieces. Infographic on Tuesdays? Wordless Wednesdays with an image? These are much easier to commit to scheduling and maintaining some semblance of consistency.
  5. Write. Seems obvious enough, but even tidbits of thoughts on paper napkins will help streamline content ideas.
  6. CHOICE. Even the best of intentions are just that: an intangible representation of thoughts and ideas. I have to own it. Do it.
  7. Measure. One way to boost the confidence to continue to put in the time it regularly takes to grow a blog and, hence, a brand, is to see your numbers growing.

Do you have a regular schedule that you follow when writing/posting? How did you overcome the time constraints that regularly attempt to impede our success at blogging? Let me know in the comments!

COM0011: Blog Post 4-”Smiling Depression”: Social media & Self-perception

An interesting read I had the other day, “How Social Media Affects Our Self-Perception” by Kelsey Sunstrum.

I’ve been having somewhat of a difficult time using and reading through my social media accounts this past week, largely due to the atrocities recently committed through various parts of the world. Social media is our connection to all things newsworthy, in addition to what our BFF had for breakfast or how many lipsticks our childhood friend has procured on sale. The thing is this: it *can* be depressing.

Social media has outlined the life of the Joneses in so many unrealistic ways we simply cannot compete with, because the highlight reel of their own lives simply mask how they present to the world in reality. We, then, endeavour to mask ourselves up in order to conform to the things we perceive are societal standards.

It’s like the Martha Stewart of the online world. I can’t make a dinner table look like the crystal napkin rings were crafted by hand from sand crushed into diamonds with my bare hands or the recipe made from ingredients cultivated during the alignment of the outer rings of Saturn with Jupiter’s fourth moon.

My focus in my online presence has been on being an authentic ”Me.” Sometimes, most of the time, I am easily able to snap an Instagram illustrating my role as a health advocate experiencing the chaos of raising five children. To post a status that is as witty and sharp as a rapier.

Sometimes, as of late, I simply post false representations of my ”Happy.”…quotes…inspirational memes…for the sake of not having to address the ugliness I see in my friends who are posting and spewing venomous opinions and hate and their innate spontaneity to post-before-fact-checking. Social media seems to afford many the opportunity to post-first, think-later.

It’s sad. Heart-breaking, at times. It adds to the pressure to keep up appearances in a brand one so carefully crafts…”Me.”

i-quit-social-media

Do you often find yourself needing social media breaks? I find it much easier, seasonally, when I can get out of the city camping, for example.

COM0012: Learning Activity (Lesson 4): Smart Health 2.0

The connection is out there...

The connection is out there…

The use of social media within the context of healthcare is an avenue for improved access, conversation, networking and resources that previously, pre-smart technology, was limited in reach and measurement.

Health 2.0 in Social Media in Healthcare

Today, there are more and more patients using social media not just for the sharing of news links on health related issues and to promote lifestyle, but also to rate doctors and healthcare systems on a level that has opened up dialogue and conversation between all the parties involved in a patient’s care. My optometrist has her own Facebook page. She has made herself and her office available with information at her client’s fingertips. My rheumatologist has been rated publicly. Having a poor (really poor) rating, one would deduce that this would be an opportunity for his professional growth and personal understanding of the very people he is treating.

According to a Health Research Institute survey: 42% of consumers are using social media to access consumer reviews of treatments, physicians and hospitals. 25% have posted about their health status at least once. 20% have joined a health-related forum or community. – Health and Social Media in Healthcare 

Hospitals, in addition to using social media for staple engagements such as fundraising, can also listen to what their patients are saying about their experiences and encourage interaction on a more personal level, especially whereas most patients often feel like merely a flat number on a thick file chart. The better the conversations, the interactions, the better increase in referrals and ultimately, the increase in the bottom line.

Healthcare online is a delicate ecosystem, of sorts. The healthcare professionals must be willing to be available and open, while the patients must be willing to give the feedback. Negative statements must be addressed openly and honestly, which will, in turn, increase the user ratings and attendances. If even one link is out of balance, the risk to health organizations/ businesses/professionals can deteriorate quickly and permanently. It is essential that these forums for patient care embrace how often their patients use social media in the search for quality professionals, resources, technologies and applications that will make their journey through the healthcare system as easy as possible. They must invest in the time and energy to seek out and find their patients’ conversations in order to best assess their needs in a growing use of a systemically taxed healthcare system.

At the end of the day, connecting patients and healthcare professionals in interpersonal connections empowers the patient. The more empowered a patient feels, the more they are better prepared to be a proactive participant in their own health and care.

COM0011: Blog Post 4 – Social Media & Deathly Healing

No, internet, there is no cure...

No, internet, there is no cure…

In today’s era of self-diagnosing and finding information on health conditions on the Web 2.0, many patients have access to information before even setting foot in their health care professional’s office. Often, much to the chagrin of those best knowledgeable in the treatment and care of their patients.

I advocate globally for patients of autoimmune disease. What I also advocate for is the best, proven and safe treatments available to patients. As a Chartered Herbalist, I have a vast knowledge base of complimentary therapies for those enduring chronic conditions and disease.

I also have a vast inner rage at the number of times I have been sent the “latest” and ‘’greatest’’ cure for Lupus, or diabetes, or…the list continues.

Social media has illustrated its ability to be, quite possibly, the greatest threat to patient health. Any hop onto health forums will illustrate the complexity and, often, dire side effects of many mainstream pharmaceutical treatments. Patients become desperate. Patients want to try the ‘’latest’’ and ‘’greatest’’ in the hopes of finding relief because, as many with chronic conditions know, hope is often the only light they can find to keep on keeping on.

Why do the plethora of natural healing and homeopathic links being shared like wildfire across the Web 2.0 cause concern? Because patients do not consider the effects on disease of adding herbal remedies that may contraindicate the current list of medications they are taking, or, even worse, when, out of desperation, patients are stopping treatment altogether via the “Big Pharma’’ conspiracy theories.

One of the considerations for Lupus Interrupted is to provide that information. I regularly check health forums to ‘’listen’’ to what other patients are saying. It helps me formulate content based on the reality, not that which Dr. Oz is paid to provide. The quality of information can be so knowingly sketchy that sites *should* be adding their disclaimer that supplements and herbals, for example, are NOT regulated by the FDA and to talk to their doctor before consuming.

Here is the problem: patients are often so poorly received by their physicians that they bypass their healthcare team altogether. This article by Healthy.net (http://www.healthy.net/scr/article.aspx?Id=3349) illustrates the use of sorely outdated studies (1984) and makes claim to studies that, in fact, have been more recently proven to have no effect at all on systemic lupus erythematosus.

It makes me want to *headdesk* in a most epic manner.

Every health-related website/blog/forum should, in my opinion, come with a legal clause of disclaimer. Lupus Interrupted certainly does.

Have you, or someone you know, made claims following the ‘’latest’’ and/or ‘’greatest’’? Gluten-free for non-celiac? Ditching modern medicine for turmeric? And, did they do their research on credible, medical websites, and consult their attending healthcare team?

COM0011: Blog Post #3 – Social Media’s Highlight Reel…

I'd like to thank the Academy...

I’d like to thank the Academy…

One of the most interesting things about being a health advocate and blogger is how many newsfeeds you can find yourself hidden from in the seas of Social Media.

Think about your online friends. You know, the foodies that post Instagram photos of every meal, strategically placed within the context of reductions and organics. Or, the passionate cat-lover. Or, the makeup artiste who wows with posts about eyeliner and lipstick. You know them because they post a disproportionate amount of the very same things.

Health advocacy has the very real ability to empower a blogger to educate people in All of the Things…All of the Time. What I’ve since come to learn over the past several years is this: People do not have to care.

They don’t have to at all. I have many connections and interpersonal relationships with various types of health advocates and I can assure you that I, myself, have hidden some from my newsfeeds. What I feel they lack is the capacity for BALANCE. Acting as their own ‘’brand’’ I can assure myself that in between researching the latest ‘’miracle cure’’ or which veggies are best for what health concern…they are stepping on LEGO pieces and maybe having an ugly cry in the shower while the cat paws underneath the door for their kibble you’ve once again forgotten.

Social media has become either everyone’s ‘’highlight reel’’ or, as can often be found in the case of health blogging, Whine-1-1 Syndrome. That seemingly wondrous life without imperfections or drama…or…the ‘’call the waaaaaaaaa-mublance’’ because life sucks with chronic disease and they are so desperate for people to know by what volume of suckage they are being made to be miserable.

I very carefully ensure that I am aware of the postings that I make on various media platforms because I *am* my Lupus Interrupted website/blog. As such, my readers and followers relate to my well-rounded balance of the good, the bad and the ‘’even Oprah couldn’t make this s*t up.’’ I am able to continue to advocate with resources and information but I also do so within the reality of living a life with an autoimmune disease.

Have you had to modify your online persona to maintain your brand? What has been the easiest part? The hardest?

COM0011: Blog Post #2 – ”Like butter…”

Spreading yourself too thin?

Spreading yourself too thin?

Having been only mildly introduced to all things social media when I’d first contemplated crafting ‘’Lupus Interrupted,’’ a web-blog about living with an autoimmune disease, I really didn’t have a full appreciation for the plethora of platforms available by which I could promote my writing.

So mildly so, I admit I’d only ever read a handful of blog posts, at best count. Not just websites, but actual posts. I did what any newbie to social media would do: I signed up for accounts on EVERYTHING. Everywhere. All of the Things. I didn’t check where my target market was hanging out. I didn’t contemplate the upkeep and I certainly didn’t consider the actual interaction between health advocates and their followers: Not just within my own blog posts, but in commenting and posting on others’ sites.

In fact, I’m going to go as far as to say, as I’m approaching 2.5 million views? I’m STILL not grasping the consequences in their entirety. The more I read through lessons, the more I recognize the necessity to engage much more proactively than I have been in the past. Or, ever. One of the reasons?

Butter.

When I’d started posting and cross-posting to eleventy-billion different social media forums, I didn’t realize the consequence that inevitably presents itself: I spread myself way too thin. Like butter.

For blogging, having a Facebook page has been wonderful but it is limited by the algorithms that someone, somewhere, decided would work for the “Everyone.’’ I am not everyone. I am Lupus Interrupted. So, I’ve also managed a Twitter account that is a personal account associated with my blog. For my advocacy, it is a great method to share and network. Twitter has become a fast-paced outlet within which to post links to articles, quick photos and, of course, updates in 140 characters. It works well for me. I don’t have much time. My followers don’t have much time. It’s a quick one-stop shop for information.

Google+ has been nothing more than an extra place to post, especially when I go on a Facebook hiatus of seeing the drama and other negativity on a daily basis. But, I’ve yet to establish how Google+ could best work for blogging in ways that other platforms cannot. To date, it appears that my additions to circles are based on international men seeking ladies. It’s…aggravating, at best.

Instagram has been a relatively surprising plus in my social media repertoire. Part of my advocacy goal is to outline and illustrate living with Lupus. To highlight the ups and downs and, most importantly, the reality of living with chronic disease. Instagram has been that very outlet and seems to resonate well with my followers. It has added that personable presence that other patients want to see in the hopes of knowing that they are, in fact, not alone.

While I do have a Pinterest account, I find social bookmarking to be complex, at best. I find having Boards for my health bookmarks is building re-pins gradually. I believe I need to look at the boards of other health advocates to see what kinds of posts of theirs is drawing the most attention.

All in all, I recognize the need to step out of my self-oriented, ‘’others benefit by association and that’s cool’’, type of mentality and focus some core effort into looking at what OTHER advocates are doing to bring the engagement required to best promote my mission and goals. I find using sites like “Rite Tag” to be incredibly useful to finding where on social media platforms my keywords and hashtags are most often found.

Goal: Find more resources to find more audiences and maintain more engagement.

After all these blog posts, I owe it not only to myself but to my followers and readers who continually seek out the information and story I express.

Butter is for toast. 😉

What kinds of accounts do you manage? Are there extraneous accounts you feel would be best served NOT to be utilized? Why?

COM0011 Assignment #1: Say ”Cheese”!

 

home-frame-photo

Educate before they Litigate!

One of the most common hardships I experience as a blogger within my global health advocacy is the use, or, more commonly, MIS-use of images within the blog itself.

When I’d initially set out to start up my online presence, my online use of imagery wasn’t even a consideration until I’d attended a social media conference (SOCAPOTT) where the reality of the legal implications of imagery use online hit me like a Mac truck on a modern day highway. I was gobsmacked. One of the highlights of each and every blog post I had been making contained an image. Mostly my own, but periodically I would hop off with my bff, Google, and have a little peruse of the images that best matched my topic-du-jour.

Irony? I’m a law clerk by profession. But, like most people, the laws surrounding intangible concepts like Trademarks and Copyrights was absolutely foreign to me. It wasn’t until I was sitting in the conference room listening to one of the keynote speakers’ workshops that I realized that, to my horror, I had likely infringed upon the rights of real people and their creative endeavours at some point in my blogging history.

Sure, I had found many articles relating to the psychological factors in choosing imagery. I found a great article on Hootsuite’s website, “How to Chose Social Media Images’’ which explains a little bit of the psychological reaction to imagery down to a checklist that every user of imagery should refer to before hitting that ‘’publish’’ button.

However, this particular article merely alludes to the concept of legal implications of the use of imagery by referencing “creative commons’’ images. For the layman of BloggersVille, this might strike a thought into someone to Google the term and from there come to an implied understanding that, perhaps, just adding a photo willy-nilly may not be such a good idea. Might. Not likely.

My initial reaction, post-horror, was to hit up the Google machine again to actually look up the laws of the Everything that governed the use and distribution of imagery online. Educate in order to prevent the requirements to Litigate.

The Social Media Examiner has a wonderful article explaining not just the the “fair use’’ concept but also of copyright and the rights of creators versus specific exclusions to the regular legality surrounding fair use images.

 “Copyright Fair Use and How it Works for Online Images’’

However! As a law clerk who also has dabbled in a bit of the online ‘’Did she just take my twins’ photo and claim them as her own?!’’ (this actually happened to me, yes)…I am also highly attuned to the nature of jurisdiction. The laws of the land are the laws of the land! So, where, exactly, are you? Having much experience in the global health advocacy platforms and forums, but being Canadian, I am well aware of the efforts of the ‘’cease and desist’’ after being confronted by a woman claiming I had stolen her two-word slogan, ‘’Chronic Badass’’, and that I should immediately cease and desist its use in my Twitter handle and my writing.

What she failed to take into account was that she was in Australia, I was in Canada, and, truth be told, there were multiple citing of this very slogan dating back five years prior, in multiple countries, to her ever crafting it up for herself.

So. Imagery. Social media. Laws. Rules.

Case in point: Here is a handful of countries I chose to look up –

Copyright Law of the United States

Commonwealth Consolidated Acts: Copyright Act 1968 (Australia)

Copyright, Designs and Patents Act 1988 (United Kingdom)

Copyright Law of the People’s Republic of China of February 26, 2010

My challenge to myself is to brush up on more of the Canadian law:

Copyright Act

R.S.C., 1985, c. C-42

Perhaps the goal is to find that delicate balance between the laws of your land and the laws of other countries and take into consideration the use and impact that you using an image can have.

Or, in the alternative, perhaps I will brush up on my own photography skills and just create images to use myself!

Which is the easiest for you? Do you have an account on sites like Dreamstime for stock images or do you prefer to seek out the creative commons images on sites like Flickr? I’ve certainly afforded the few dollars to purchase images where I was going to use them as permanent background images or headers. Where I want to be careful when using stock photos, or photos found under creative commons, is that they are, obviously, there for anyone to have access to, thereby saturating the pool of images used. The more common an image, the more it is viewed and, respectively, the less of an impact it could invariably have on one’s purpose of use.

I continue to be astounded as to how much time social media puts on even the seemingly smallest of postings and by the volume of ‘’taken for granted’s’’ there are. Assumptions, in social media and legalities, are never a good thing. I want my blog to thrive, educate and provide a network within communities.

It is eye opening to think one photo improperly used could threaten an entire website.