Deadline Extended

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).

Reader Insight Program - Update & Plea!

Image found here.

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!!

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:)

Picture found here - I think I'll make this my motto.

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.

This lovely photography by Caroline, found here.

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

Thank you for helping me make my blog even more engaging!  I can’t wait to see you what you think!

Pain Relief - Reality for Chronic Pain Sufferers

Kelly (aka RA Warrior) blogs about every aspect of life as a Rheumatoid Arthritis patient.  You can read about her experiences (and knowledge gained about) dealing with family, responsibilities, doctors, diagnoses, treatments, even the media and government, at her blog.  While Kelly's posts are focused on RA, we all know that these conditions overlap and we experience many of the same things with other diagnoses.

Recently, Kelly posted on the vital topic of pain relief.  Then, being Kelly and all, she took it a step farther and invited her readers to post on the topic as well for a blog carnival.  And, well, here I am:)

I wanted to focus on what I consider to be a fundamental issue for chronic pain sufferers, and one that (in my experience) isn't examined directly often enough.

As Kelly mentioned in her post, there is a lot of conversation on the issue of pain relief efforts by doctors / caregivers.  Patients, especially those in chronic pain (who are often mistakenly labeled as drug-seeking) and men, frequently find their complaints of ongoing pain are dismissed.  They get responses like "it should get better with this treatment" (excuse me?  "Better"?  What does that even mean?!), or "try using heat/ice/Tylenol/AnyOtherPacifyingMechanism" as if we haven't already tried these usual remedies before 'bothering' the doctor with the complaint.  It is VERY true that many (if not most) patients are struggling to have their pain recognized and treated at a basic level.

Unfortunately, the problem doesn't stop when pain is (finally) dealt with by a doctor.  Treatments (drugs, holistic remedies, lifestyle changes) usually aren't enough for chronic pain sufferers.  So then the discussion evolves to the problem of getting SUFFICIENT pain relief treatments.  But, is this realistic?

Image found here.

I'm all about hope - hope for understanding, acceptance, societal change, support, treatment, relief, advancements, and cures.  But hope has a caveat.  If the basis for hope is not realistic, hope may lead to huge disappointment.  To have hope and benefit from all the good things it offers, you have to have a realistic understanding of where you're starting out (this is all part of my "pragmatic optimist" theory).  Hope grounded in reality leads to actionable ideas; if we understand where we really are today we can do things to make tomorrow what we hope it will be.

So what is our current reality when it comes to chronic pain:
*We have chronic pain - which means we have ongoing pain over a long period of time.  The pain may come and go throughout the day but return day after day, or it might be pain that never truly goes away.
*We've tried traditional and OTC relief methods - OTC medications (acetaminophen, ibuprofen, aspirin), applying ice or heat.
*We've usually tried alternative relief methods too - massage, rubs, Grandma's never-fail tea & herb drink, hot baths, dietary changes, supplements.

What can doctors do:
*Prescribe medications specifically to relieve pain - codeine, morphine, fentanyl (these turn off pain receptors).
*Prescribe medications to reduce pain by reducing problems (like inflammation) - NSAIDs, steroids, muscle relaxers (these work to reduce the problem causing pain like inflammation or muscles pressing on nerves).
*Order professional therapies - occupational (how to relieve/prevent problems with how you move), physical (how to relieve pain & problems through exercises), orthopedic/osteopathic (adjusting your body for structural irritants (such as chiropractic medicine)).

Now for the reality check -
What are some limitations of these solutions:
*Drug interactions
*Side effects
*Long-term effects of drugs (such as long-term liver damage, ocular effects, kidney damage)
*Expense (high prescription costs and many therapy programs require a copay for every visit 2-3 times per week)
*Time commitments (it's hard to work therapy routines into busy or unpredictable schedules)
*Limited success - There is only so much these things can do.  The drugs that address things causing the pain are a great way to go but don't usually relieve all pain.  Therapies tend to reduce intensity but often don't eliminate the pain and can even cause other (lesser, usually temporary) ones.  The drugs most likely to really eradicate the pain are also the most dangerous - they don't treat the problem so the issue can continue to cause damage, they often involve mental side effects (everything from mood swings to delusions), distribution is usually tightly controlled, and many can cause addictions.

Unfortunately, this means a patient with chronic pain may be expecting too much from modern medicine & our doctors.  When we begin a new treatment (pharmaceutical or otherwise), we should discuss with our practitioner what are the REALISTIC benefits we can expect to experience.  HOW MUCH pain relief should we look for, and how long will it take to realize?  I'm concerned that as patients we are setting ourselves up for failure by looking for complete relief when it just isn't realistic at this time.

Of course, I believe we should HOPE for full relief.  We, as people, DESERVE this relief, and we should demand scientists keep working for it.  We should still have hope, now that we know exactly what it would take to be real!

In the meantime,
There are a few things we can do to make the most of the reality in which we live:
*Prioritize...and make sure our doctors share our priorities - medications come with side effects and contraindications.  But that doesn't mean we have no choices!  A patient should decide what he/she can & can't live with, and work with their doctor to align their medicines accordingly.  If the steroid you'd need to relief the symptom most intrusive to you interacts with something else you take, tell your doctor that this is more important.  They may be able to take you off the other medicine, find out if there's an alternative drug that won't interact with the steroid, or suggest other options to allow you to take the steroid which may make you happier. 
The same is true for side effects from drugs - if you can't stand a side effect, maybe the original symptom is worth living with.  However, remember that the reality simply is you can't have it all.  It's rare you can treat and resolve a symptom completely without other side effects, so have a reality sit-down with yourself and decide which you can live with.
*Take responsibility - let's say your doctor ordered a therapy, but you can't afford (in terms of time and/or money) to go 2 or 3 times a week for 8 weeks.  Find a way to go a few times, and consider if you can learn the therapies to do on your own at home.  This is usually an option with physical therapies (depending on the safety of doing the exercises on your own), though less so with ones that involve someone else 'forcing' your body (like in an orthopedic setting).  If you're considering this, be honest with your doctor and discuss if this is something you can try safely.
*Don't get mad, get creative - If a treatment really isn't cutting it, think in different directions.  What about combining different types of treatments; many drugs interact, but what about some medication, lifestyle adjustment, and an alternative therapy?  Since they each approach the problem in a different way, it's more likely you'll experience comprehensive relief!  Just remember nutritional treatments can interact with prescription drugs, so consult your doctor to be safe.  And don't forget seeking spiritual support!  But we can address that in another post:)

Image found here.

And if that still isn't enough?  Use your voice.  Tell the government and science community "hey, the status quo isn't cutting it here".  Blog, join an organization, write letters, make phone calls, spread community awareness, reach out to drug companies.  Find other people who agree with you and work together.  It can become your calling in life, or be something you throw your weight behind when you have some free time.  But you will be empowered, and since you can't run a marathon without a first step, your action is pivotal!

No Regrets, on Your Terms (Repost)

This CPA review is a monster, and has hijacked all my time lately.  I'm sorry I haven't been able to post much lately!  I take the exam on Monday, so hopefully after that (and a too-short vacation) I'll be back:)

In the meantime, I have a post I originally put up in May 2010 which I think you'll enjoy.  Honestly this is a message everyone could take to heart regardless of their health-state, but can be even more important for those of us with chronic illnesses.  We face decisions every day about what we can accomplish within our limits, and I don't know anyone who does it without that mustard seed of doubt in the back of our minds about missed opportunities and the fear of "missing out".  It's a founded concern - most of us have lost friends and even relationships when we couldn't keep up physically and have to pass on a lot of recreational fun in the hopes of being able to meet our obligations. 

But I believe with the right approach, we can do make choices that make us happy while being responsible, and remind ourselves of all our validity and vitality in the process.

Image found here.  This cat may be my new hero.

No Regrets, on Your Terms (Originally posted on May 27, 2010)

"Have you ever done something you regret?"  I hate that question, because it's just plain stupid.  Anyone who's ever blurted out something not-too-bright and had that instant grimace 'regrets' something they've done.  I'm only in my 20's, but pull out a picture of me 10 years ago and I'm probably going to cringe about something I wore (and those who have pictures from the early 80's have a lot more to 'regret' than me).  And we won't even get into middle school crushes, comedic trips-and-falls, or the various ways pants (or skirts) can inspire more regret than a diet-busting ChocolateFest.  Yeah, I'm pretty sure we all have regrets.  (However, I'm rarely willing to share them with the anonymous and indefinite public who may read my answer to this question, usually found in online surveys.)

But ask me "have you made decisions - real ones, of substance - that you regret", or if I think that when I'm someday on my death bed I'll wish I had lived my life differently.  Go on, ask.  I dare you!

You don't have to ask me; I'll tell you whether you want to know or not:)  My answer is "no".  My life and the decisions I've made so far about it are far from perfect.  I've made many mistakes, and continue to do daily (I have no illusions of perfection).  But by 'mistake', I simply mean what I've done was not the best or most productive option that existed, and sometimes caused a problem or inconvenience for myself or someone else.  However, I don't do just about anything without a reason or purpose (some people would say I over-think everything - I say logic is our most valuable tool; tomayto - tomahto).  Therefore, I feel everything I've done and all the consequences thereof have a purpose.  Did you notice that - the word "purpose" describes both the motive for and effects of my actions?  More than coincidence, if you ask me....

But anyway.  Many choices I've made were just plain good ones - marrying Shawn, going to Villanova, all the things I do to try and control my conditions, etc.  Some were fruitful, even if not ideal - taking the 5th year to finish my degree and "going public" with my medical issues come to mind. 

Then there's the third category.  These are decisions I've made which, if viewed from certain perspectives, look pretty bad.  Examples would be things such as staying in color guard for my last 2 years of high school, or any time I push my body past a safe point to achieve some other goal.  I know that each and every time I do this, I am risking more than next-day soreness.  Anytime I wake up aching, stiff, and fatigued because I just HAD to go to that concert or participate in that pick-up game, the aches/stiffness/fatigue are only the most immediate results.  They indicate a type of damage which has long-term implications on the speed at which my conditions may progress, as well as the severity they may reach (and no, I'm not being dramatic).  But what would be the point in making my body last as long as possible, if I didn't do anything in that time?  Yes, I have many things I still want to do that require physically holding up - having kids for instance - but it's a balancing act, not a one-ring show. 

Many of you have probably seen the movie "Steel Magnolias" (which, incidentally, is fantastic and I encourage everyone to watch it).  No spoilers here or anything, but basically it's the story of Shelby, a young woman who has grown up with Type 1 Diabetes (whadda ya know - an INVISIBLE ILLNESS).  At a critical point in the movie (again, don't worry I won't spoil anything), Shelby's talking to her mom about a decision she's made in her life with which her mother disagrees, because of the potential health risks involved.  As she tries to defend her decision, Shelby finally blurts out "please Momma, I need your support!  I'd rather have 30 minutes of Wonderful than a lifetime of Nothing Special."

Every time I see this scene (and that's at LEAST 30 times so far), it resonates with me.  Yes, I have goals and desires and even obligations to other people that mean I am responsible for making good choices regarding my health, but only to the extent that those choices ENHANCE my life (or someone else's).  I want my Wonderful.  And just like Shelby, I'm going to get it, even though it means making some tough choices and taking a few risks.  My path is based on my own priorities and values, which are going to be different for each of us in various life stages and situations.  My decisions would be very wrong for many of you, and some of your choices wouldn't ring true for me. 

So no, I don't regret my decisions in life, even if they had a cost.  Some of them were necessary if only for what they taught me for future decisions (I'm a big believer in the idea that everything's a learning opportunity - if you apply that knowledge later).  Some of them, horrible as they seemed at the time, opened doors I couldn't possibly have imagined; that I would have missed if I'd played it a bit safer.  And honestly, that in itself is what gives me hope - if I've had this many wonderful outcomes in my brief 24 years, there must be more around the corner!  Why do I look for something good to come when I hear bad news?  How do I keep from giving up when I get slammed (and don't be mislead, I've had very real bouts of Depression)?  Because it happened before, many times.  I've gotten miracle after miracle, gift after gift.  I've gotten them, as far as I can tell, because I keep looking for them.  God helps those who help themselves, which I believe to be absolute truth because when I've seen someone wait for their miracle they rarely got it, but every time I've worked for mine it came through.  I know my light's at the end of the tunnel, so I have no problem digging the tunnel myself with every choice I make.  I have no regrets - on my terms.

So I ask you, do you have any regrets?  Or do you empower yourself, to know when you need to play it safe and when there's something more important to your happiness?  Please, live your life so you have no regrets - on your terms.