Dear Readers,
WEGO Health has decided to extend the deadline for readers to fill out the Reader Insight Survey to the end of this week. Thank you to those who did fill one out for me, I look forward to seeing what you had to say when the results are provided to me at the end of the program.
Based on the latest update I received, however, there are very few of you (who filled out the survey). I believe the count of those who actually took the survey was 4. I have over 1,000 hits on my blog this month. I kind of doubt that each of those 4 people visits my blog 250 times in a month, so that has to mean there are more readers stopping by, and I'd really appreciate your feedback. Some people have told us they don't understand why the survey asks questions to determine what kind of health activist the reader is - but it does have a purpose. By understanding how you use information, I can try to provide more relevant and useful posts to you in the first place.
I really hope more people will jump in with the very kind Fabulous Four who have filled this out for me (and remember, if you filled it out for someone else's blog, that doesn't count for me so you'll need to do it again following my personal link). Please please PLEASE fill out the survey for UII, here (http://bit.ly/onFNFA). Thank you!
(And by the way, just WAIT until you see the next few posts I have in store ^-^ :D).
August 31, 2011
August 23, 2011
Reader Insight Program - Update & Plea!
You may remember that I’m currently participating in WEGO Health’s Reader Insight Program – helping me to improve my blog with direct feedback from you, providing you with instant social media tips, and finding the Health Activists among you for exclusive invitations to WEGO Health programs.
The program has been going on for about a week, and WEGO Health just sent me an update. And honestly, the numbers are so low I can't even bring myself to share them with you.
I know this is yet another survey, yet another link, yet another set of questions you're probably tired of asking yourself. But, this is also one of the few ways I can get any information or guidance.
There are a number of approaches to being a blogger. Sometimes a person blogs because they want to discuss or share all kinds of things going on in their own life. They may not even care if people read what they write, or hope that those who do read it are entertained. Other bloggers are like clearinghouses for information. They may never write anything personal, and most posts are about things they've learned, read, heard, or found online. They are obviously trying to be helpful in the way they are most comfortable - constantly passing along information, whether about a specific topic or general news.
Then you have the rest of us. Many bloggers post a variety of entries, sometimes passing on information, other times sharing a part of their personal life, and sometimes asking questions. We are trying to interact with our audience. Most bloggers I follow are like me in this way. But we can guess what our readers care about for only just so long. Eventually we need you to interact with us.
You know how I feel about WEGO health. I mention all the time that I enjoy being a part of their network and have had many great experiences and opportunities at their hands. But I don't expect everyone reading my blog to want to do the same. If you don't want to join WEGO, that's fine! Not a problem! It's just not your thing. But even if you don't want to join, you can take the very quick survey and help me out. It will ask you a few questions aimed at determining your style of health activism - that's what WEGO's about and all - but also about why you read my blog, what you like, what you dislike, what I can do to be more relevant for you. THOSE are the questions that I need you to answer.
My recent post about chronic pain is getting quite a bit of attention, thanks to Kelly at RA Warrior who included it in her blog carnival (you can see the other responses here). The only reason I knew to put up a post on this critical topic is because Kelly interacted with me (as her reader) and brought up the idea. I want to write many more useful, relevant, meaningful posts, but I NEED to hear from you to do it.
The program will be going on for another week, so if you haven’t had a moment to take the survey and share your thoughts yet, I hope you will! Here’s the link to share feedback with me: Reader Insight Survey. I really hope you'll help me out, because I want to have the best impact possible and need some guidance to do it!!
August 17, 2011
The Smell of Clean
It must have been a week of really good posts! Another of my blogging friends, Miss Diagnosis of A Fragile Faith, put up this useful post recently (see link below).
I know a lot of my readers have sensitivities to many chemicals. Personally, I'm noticing gradually-increasing reactions to everything from perfumes to unvacuumed spaces (which REALLY puts me at a disadvantage in my own home...let's just say I will never be known for my housekeeping).
We usually do laundry at my parents' house each weekend when we go over for Sunday brunch (no we're not upity, we just go to church first). We always used scented detergents when I was growing up, but a few months ago my parents found a deal on one of those "free" detergents, without fragrances or dyes. Holy shnikes, is that stuff good. I didn't think it was such a big deal at first, but last week we did laundry with the scented degertent that was on sale this time and I seem to be itchy and sneezing all the time. And, this detergent's called "Mountain Fresh Scent" - I'm not sure what a mountain smells like, but I just keep remembering what bears do in the woods...
And on that note, please, enjoy The Smell of Clean:)
I know a lot of my readers have sensitivities to many chemicals. Personally, I'm noticing gradually-increasing reactions to everything from perfumes to unvacuumed spaces (which REALLY puts me at a disadvantage in my own home...let's just say I will never be known for my housekeeping).
We usually do laundry at my parents' house each weekend when we go over for Sunday brunch (no we're not upity, we just go to church first). We always used scented detergents when I was growing up, but a few months ago my parents found a deal on one of those "free" detergents, without fragrances or dyes. Holy shnikes, is that stuff good. I didn't think it was such a big deal at first, but last week we did laundry with the scented degertent that was on sale this time and I seem to be itchy and sneezing all the time. And, this detergent's called "Mountain Fresh Scent" - I'm not sure what a mountain smells like, but I just keep remembering what bears do in the woods...
And on that note, please, enjoy The Smell of Clean:)
Picture found here - I think I'll make this my motto.
August 13, 2011
Sjogrens Syndrome Medication | Treatment for Sjogrens Disease
As you know, at UII we try to stay focused on hope. So long as there's a tomorrow, there's hope - for a treatment, relief, a cure. For understanding, for compassion, for education. For laughter, for friendship, for peace. If nothing else, for a miracle.
My base level is pretty hopeful. I have my low moments like everyone else...times when I'm depressed, when I frankly don't want to move past my negativity in the moment to think about the hope of tomorrow...but they pass. I see myself as an optimistic person, but some news recently took me by storm. I found an article on Arthritis Today about MULTIPLE advances in treatments for Sjogren's Syndrome, ranging from drugs to biologic therapies (see the article, link below) to gene therapies...and even artificial salivary glands! OMG!
That's what really pushed me over the edge. The idea of an artificial gland to restore oral moisture (dry mouth's one of my more prominent symptoms)...well it's almost too much to imagine. I thought I was usually hopeful, but when I read this article and had this dramatic reaction, I realized how hopeless I had been.
I had hope for societal changes - understanding, an interest in learning, acceptance - but it seems I never really gave much thought to medical hopes. I could talk about hope for a breakthrough, but hadn't considered the reality of that hope and what it could mean for me.
Many of us have been asked that (somewhat ridiculous) question, "if you could magically make it happen, would you like to be completely cured". I think a lot of people share my reaction that actually, I'm not sure I would. My experiences as a patient are a BIG part of who I am and why I'm who I am. If I woke up one day with the need for those experiences gone, who might I become? Maybe I'm better off carrying my cross everyday so I remember who I am.
But that's when it's a magical, mythical, cured state. What if I could undergo a procedure or treatment, or maybe an ongoing treatment, to be "cured"? If it weren't magic, but validated science? This is another thing entirely. This, I think, could be the best of all worlds. I could have relief but still remain connected to 'who I am'.
And as a side note, for the record, to me this scientific cure would still be a miracle. People think of miracles as something unexplained - but I believe most times they are perfectly explainable and still a gift from God. Did you ever wonder WHY a cure came out when it did? WHY someone came upon a person in an emergency when they did? WHY the rainbow appeared on a day when someone needed to see it the most? Can't science have "solved" a problem because God led them to it? I'm quite sure it's all God's doing.
But I digress:) I'll leave you with my hope, and the article on Arthritis Today responsible for it. Perhaps it's not coincidence that I found the article at all....;)
Arthritis Today Article: Sjogrens Syndrome Medication Treatment for Sjogrens Disease
My base level is pretty hopeful. I have my low moments like everyone else...times when I'm depressed, when I frankly don't want to move past my negativity in the moment to think about the hope of tomorrow...but they pass. I see myself as an optimistic person, but some news recently took me by storm. I found an article on Arthritis Today about MULTIPLE advances in treatments for Sjogren's Syndrome, ranging from drugs to biologic therapies (see the article, link below) to gene therapies...and even artificial salivary glands! OMG!
That's what really pushed me over the edge. The idea of an artificial gland to restore oral moisture (dry mouth's one of my more prominent symptoms)...well it's almost too much to imagine. I thought I was usually hopeful, but when I read this article and had this dramatic reaction, I realized how hopeless I had been.
I had hope for societal changes - understanding, an interest in learning, acceptance - but it seems I never really gave much thought to medical hopes. I could talk about hope for a breakthrough, but hadn't considered the reality of that hope and what it could mean for me.
Many of us have been asked that (somewhat ridiculous) question, "if you could magically make it happen, would you like to be completely cured". I think a lot of people share my reaction that actually, I'm not sure I would. My experiences as a patient are a BIG part of who I am and why I'm who I am. If I woke up one day with the need for those experiences gone, who might I become? Maybe I'm better off carrying my cross everyday so I remember who I am.
But that's when it's a magical, mythical, cured state. What if I could undergo a procedure or treatment, or maybe an ongoing treatment, to be "cured"? If it weren't magic, but validated science? This is another thing entirely. This, I think, could be the best of all worlds. I could have relief but still remain connected to 'who I am'.
And as a side note, for the record, to me this scientific cure would still be a miracle. People think of miracles as something unexplained - but I believe most times they are perfectly explainable and still a gift from God. Did you ever wonder WHY a cure came out when it did? WHY someone came upon a person in an emergency when they did? WHY the rainbow appeared on a day when someone needed to see it the most? Can't science have "solved" a problem because God led them to it? I'm quite sure it's all God's doing.
But I digress:) I'll leave you with my hope, and the article on Arthritis Today responsible for it. Perhaps it's not coincidence that I found the article at all....;)
Arthritis Today Article: Sjogrens Syndrome Medication Treatment for Sjogrens Disease
Enjoy!!
Readers – Help Improve My Blog & Share Your Thoughts!
I wanted to share this new project I’m working on with WEGO Health to learn more about my blog and about all of you who read it!
First some background: For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company focused on helping Health Activists – folks like me who use the internet and social media to connect with others around health topics. WEGO Health’s mission is to empower Health Activists to help others, and they offer Health Activists the chance to get involved with video through WEGOHealth.tv, to learn and connect through webinars and chats, and to gain a voice in the healthcare industry through insight panels and the Health Activist Speakers Bureau.
Now WEGO Health is launching the Reader Insight Program – helping Health Bloggers like me to gather feedback from their readers, while telling you a bit about yourself. At the same time, WEGO Health has a chance to see if any of you are Health Activists eligible for their programs. I know many of you out there are as dedicated sharing health info and I have a feeling you’re Health Activists too!
I agreed to try the Reader Insight Program because I’m excited to learn more about why you visit my blog and how I can make it even more valuable for you. I hope you’ll take a moment to share your thoughts with me by taking WEGO Health’s Quick Quiz (http://bit.ly/onFNFA). By taking the quiz, you’ll help me learn what you need – and you’ll also receive customized social media tips for yourself!
A few things to know about the program:
- WEGO Health will gather your quiz responses and feedback for 2 weeks starting today. After the 2 weeks are up, they’ll create a Reader Insight Report for me (then I’ll share it with you!)
- Your responses will be shared with me anonymously – please be candid!
- Your information will not be shared or sold by WEGO Health
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