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Archive for the ‘Invisible Chronic Illness Awareness Week’ Category

“God is subtle, but He is not malicious. I cannot believe that God plays dice with the world.” – Albert Einstein.

I’ve long thought that to be true, but now wonder if He is not often times speaking to us more directly. Take a random walk with me, and see if you agree.

Many of us recall the “Rocky” movie franchise. He started his saga in the slums of Philadelphia, the City of Brotherly Love. The movie details him out running past a group of likely unemployed young men standing on a street corner singing “Take it Back”. Four movies later, some good, some less than good, and Rocky is back in the same neighborhood, a rags to riches to rags scenario, but he is still “Rocky Balboa” at the core, albeit changed by time, experience, and the impact of money.

I have experienced in the past 24 hours what I’ll dub “the day of diatribes”, polite though they may have been. This may or may not be considered just one more of the same by the time you finish this reading.

The first diatribe was by a Facebook friend protesting the use of the American flag as a form of forced advertising by a local realtor who placed them in every yard as far as the eye can see.

The second diatribe hit a little closer to home. It was written by a youth minister in Texas about the problem of increasing costs in higher education, specifically private faith based education, and the amount of debt it takes for many to get an undergraduate degree. The university for which I work’s mission statement is “Transforming Lives for faith, scholarship, and service.” Trust me when I say we do not intend for that to be “debt service”, and are listening and seeking solutions to the broad based problem of the higher education industry making our experience affordable and relevant. Pardon my digression from the topic at hand.

The third diatribe dealt with the problem of sensationalism and desensitizing in our mass media, all to get attention and “viewership”. It is a well written piece about things that are good and true, and you can read it at http://www.reddirtchronicles.com/2011/06/rdc-editorial-whatever-is-good-true-beautiful/

The fourth piece, more a reflection than a diatribe, was a personal look at living a purposeful life, and not a life of “Shadow Purposes” as we are so prone to do in this rich society. It can be read at http://www.reddirtchronicles.com/2011/06/chasing-my-shadow-purpose/

The final referenced piece in the “24 hours of diatribes” was my own, preceding this one, mind you. I read an article this morning about the NBA lockout and some of the quotes in a war of mega millionaires fighting mega millionaires over who gets the bigger share of the billions being offered by the masses at the alter of modern day entertainment. I love the NBA, but this article made me mad, and I suspect it will do the same for many fans as what promises to be a protracted labor negotiation fight plays out.

To paraphrase author Donald Miller, I think we all have forgotten that we are just trees in a story about a forest. The forest may be on fire all around us, but we are too focused on the near surroundings and our own concerns to notice.

The global economy appears to be badly broken. We have “stored up treasures on earth, where moth and rust corrupt, and where thieves break in and steal” (Matt. 6:19) and need to be prepared for a different day and age, even within the lifespan of some current generations. The economic storm is raging as we speak in benefit rich European society, and the tsunami is racing toward us across the Atlantic even now. Societies are in debt up to their eyeballs; we are soft; we are spoiled. And fundamental societal things are changing. We are aging. The balance of trade and who makes and who buys is evolving. Health care is a concern. The U.S. Government won’t be able to pay for it all or fix all that ailes us. All the while, I fear we are standing on the beach arguing over who gets the bigger share of sandbags while we should be moving to higher ground to stay safely out of the coming wake.

Our societies often have found themselves in these moments in history, and it seems they are often ultimately resolved by fighting a war. The U.S. War for Independence; the French Revolution; the U.S. Civil War; WWI; WWII; the Middle East conflicts. Its about a groundswell of the masses when they can’t get what they want and need, and when the establishment is out of touch. We may be entering another “let them eat cake” moment, I fear. Get the picture?

I think the establishment may be catching on. One of the more telling advertisements running on TV today is “More Saving: More Doing; That’s the power of the Home Depot”. We need to realize that David Stanley (OKC auto dealer) does not really lead the way. The Mathes Brothers may have “our style at our price”, but they will never know us by name.

As I began to pour these random reflections down and try to tie them together cohesively, I looked through the “categories and tags” section of my blog site, and a huge percentage of those previously used seemed strikingly relevent. Take a look at all those listed at the end of this and see if you agree.

After an early morning of pondering these thoughts, I got into the car to come to the office and was immediately presented with “Awakening” by Switchfoot playing on my car radio. God is subtle, indeed, and He was speaking right to me.

Face down with the L.A. curbside endings
In ones and zeros
Downtown was the perfect place to hide

The first star that I saw last night
Was a headlight of a man-made sky
But man-made never made our dreams collide, collide

Here we are now with the falling sky and the rain
We’re awakening
Here we are now with the desperate youth and pain
We’re awakening

Maybe it’s called ambition
You’ve been talking in your sleep about a dream
We’re awakening

Last week saw me living for nothing but deadlines
With my dead beat sky
But this town doesn’t look the same tonight

These dreams started singing to me out of nowhere
And all my life I don’t know
That I’ve ever felt so alive, alive

Here we are now with the falling sky and the rain
We’re awakening
Here we are now with the desperate youth and pain
We’re awakening

Maybe it’s called ambition
You’ve been talking in your sleep about a dream
We’re awakening

I wanna wake up kicking and screaming
I wanna wake up kicking and screaming
I wanna know that my heart’s still beating
It’s beating, I’m bleeding

I wanna wake up kicking and screaming
I wanna live like I know what I’m leaving
I wanna know that my heart’s still beating
It’s beating, it’s beating, it’s beating, I’m bleeding

Here we are now with the falling sky and the rain
We’re awakening
Here we are now with the desperate youth and pain
We’re awakening

Maybe it’s called ambition
But you’ve been talk, talking in your sleep about a dream
We’re awakening
Dream, we’re awakening

So, where do we go from here, in this digital community, and in each of our own “cities of brotherly love”? Maybe we are a little like that prizefighter who has gone one or two rounds too far, and needs to reset. What is our task? More saving, more doing? Maybe. Less spending, more doing? Likely. More sharing, more caring? Absolutely. Heightened attention spans are in order. We’re awakening. The bar is raised. A groundswell is happening all around us, and a tsunami may (or may not) be headed are way. Let’s move to higher ground and be ready.

Take me back.

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In this “Switch” moment, I’m reminded of Charlie Sheen, the famed crazed film star who has quite possibly ruined his career, if not his life. Charlie may not choose to “Switch!” for the better, but his employer network certainly has. CBS has made the switch, and they are moving on without him. It kind of makes you wonder if all the crazy acting in “Hot Shots” and other projects was really acting at all.

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And it got me to thinking. Sorry to spoil the fun.

Sherry has Rheumatoid Arthritis. We’ve covered it all before. One of the greatest blessings of living in the 21st Century is the advent of new medications. But, can blessings and curses come from the same needle? Quite possibly. Quite possibly.

You see, there are the side effects. Aside from that, the drugs don’t always work. No scientist or doctor has ever cracked the code sufficient to tell you how a unique human being’s body will respond, act, and react. “Hot shots”, indeed.

Things are not working so well, medicinally. Unlike the picture above, Sherry’s no chicken. She is a brave trooper, and is searching for the best right path. A “Switch!” is in order. If you, dear reader are a friend and acquaintance, or not, please be in prayer that this switch will be the right one. A few weeks to go, and we should know soon enough.

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A friend and colleague was coming home from the airport with me recently and was perusing content on his iPhone. He said “how did we ever get anything done before email?”. We had just gotten off a cross country “red eye”, so I will give him credit for a potential momentary lapse in discernment.

I thought for a moment about what he said, and the 2011 me agreed wholeheartedly, but the base model me took exception. Allow me to explain.

You see, I began my career circa 1988. They issued me a large leather bag and a gigantic “10 key” calculator, complete with a paper tape. They also showed me the supply cabinet, with it’s wealth of multicolumn spreadsheet form paper and other goodies made from wood pulp, but no computer. And we got a lot of work done. Boy, did we ever.

18 months or so later, we were all issued start of the art laptop computers, first generation MacBooks, no less. The processors were slow, the software was cumbersome, but we were expected to use them and become “paperless”. Instead, hours worked increased, pounds lugged to the client site doubled, we printed everything, and productivity trudged along for the ride.

Fast forward 23 years later, and we still have not gone paperless just yet, but I’ll admit it’s getting better. But, has productivity really improved, or do we just work more? After all, as my friend made his statement, we were riding home in a car after a 32+ hour day, and he was reading email while our greater conscious selves were napping.

A digital native, I am not. But i consider myself a wise gray haired immigrant who knows his way around the digital continent. Email. Cell-phones. Websites. Texting. Cloud computing. We are more accessible than ever.

While writing this, I took a Saturday morning phone call from a colleague in another department a few moments ago, and he was looking for the cell phone number of a colleague in mine. And he apologized for the “interruption”. Does that word even apply, anymore?

Points of contact are up, no doubt. More things have our attention. But does more get done, or do more things go on our to do list as “undone”?

Don’t get me wrong; I love the new digital world order. I would not go back, I don’t think. I have fully embraced my new nationality. But, it might be nice to visit the fatherland. I guess that is what books are for.

So, I guess my point here is that we can get work done, maybe even more without our “devices” to keep up with and upgrade/follow/maintain.

I’m going to log off now and go out to mow the yard. My friend has already done the same with his.

If you need to reach me, I’ll have my cell phone, just looking for the next interconnected unproductive opportunity to visit. ūüôā

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What do you think? Are we? I’ve spent part of this week in “NOLA“; “sin city 1“, the home of Hurricaine Katrina horror stories. When you walk down the street and see the decisions some people make, it’s hard not to want to judge. Let me be more honest: it’s just hard to NOT judge, period. “If that’s the way they want to live, then…” is a tough sentiment to fight back.

And yet, Jesus loves them, just like he loves you and me. Jesus died for them, just like for you and me. It may just be that some messes take a little more persistence in cleansing than others?

New Orleans is a city known for it’s food: various delicacies, some fried, others sauteed. I use the image of “fried gluten” as a metaphor of sorts. As discussed in this space before, my family deals with autoimmune disease across various levels of severity and required response. It is an environmental situation that we must live with and manage. While the conditions plaguing are not curable, they are treatable. And lifestyle choice makes a huge difference. “Stay away from gluten” could almost be rule number one.

Golfer Phil Mickelson has just recently been diagnosed with a potentially severe autoimmune disease: another one of the “Invisible Chronic Illnesses” that are out there. I’ve attached the article about his understanding and response, and the response of others, below for some context and to add some “color” to this concept. It seems the autoimmune disease community is not being too kind to Phil. Granted, he may be in denial and his thinking about long term prognosis may be wrong (or not), but the man is suffering in a new paradigm, and which of us might not react in similar fashion when faced with a new struggle of potentially epic proportion?

Back to the “sin city” analogies: we are all plagued with “chronic illness of the soul”, some invisible (Bible Belt middle America), some not so invisible(life on Rue Bourbon). But we are all plagued nonetheless.

How do we respond? Judgement? Serving up a heaping can of spiritual and emotional “fried gluten”, just what the patient does not need? Or, love and caring?

“…by holding back what I deserve. How wonderful Your mercy is; how marvelous Your ways…”

I come. And I’ll try to leave the fried gluten back on the grocers shelves.

Sauteed grace serves up much better, I understand.

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KENSINGTON, Md., Aug. 11 /PRNewswire-USNewswire/ — Golf star Phil Mickelson announced August 10 that he has been diagnosed with psoriatic arthritis, an inflammatory and potentially debilitating condition that in his case came on quite suddenly, leaving him nearly crippled earlier this summer.

“Every joint in my body started to hurt to where I couldn’t move,” he told a press conference, reported the New York Times. ¬†“I would just lay down and couldn’t roll over.”

Mickelson said the psoriatic arthritis quickly spread from his ankle, finger and wrist to his hips, elbows and shoulders.

“He is not being dramatic; that can literally happen to someone experiencing a flare of psoriatic arthritis,” said Michael Paranzino, president of the nonprofit Psoriasis Cure Now. ¬†“One day you are feeling fine, and days later it can be difficult to get out of bed or tie your shoes. Psoriatic arthritis is a serious disease.”

Roughly one million Americans have psoriatic arthritis, and cases range from mild to what Phil Mickelson described this week. ¬†Fortunately, the man on the edge of being ranked the world’s number one golfer is taking Enbrel, a biologic treatment that has transformed the lives of many people with psoriasis, psoriatic arthritis, rheumatoid arthritis and other immune system diseases.

Paranzino added: ¬†“Phil Mickelson says Enbrel has already improved him at least 90%, which is wonderful, but what about the many people with psoriatic arthritis who cannot afford the high price of a biologic, which often exceeds $15,000 annually? Even some people with health insurance are denied these cutting-edge treatments.”

But Phil Mickelson may also be a bit too sanguine about his long-term prognosis with psoriatic arthritis.  He told the press conference, reported the Associated Press:

“I’ll probably take this drug for about a year, and feel 100 percent. I’ll stop it and see if it goes into remission and it may never come back. It may be gone forever.”

“It’s not that it’s cured, but it may never come back,” he added. “Or if it does come back, I’ll start the treatment again and should be able to live a normal life without having any adverse effects. So I’m not very concerned about it.

“Now that I feel confident it’s not going to affect not only the rest of my career or the rest of my life, but even in the short term it shouldn’t have an effect, I feel a lot better about it and I’m a lot more at ease to discuss it.”

In many cases, people with psoriatic arthritis find, for reasons still unclear to experts, that their treatments, including the biologics like the one Phil Mickelson is on, lose effectiveness over time. ¬†Sometimes, they can switch to a different biologic treatment and buy more time, but there are patients who have run through all existing treatments. ¬†The treatments also carry FDA-required black box warnings for possible rare but serious side effects. ¬†In short, there is no guarantee that Phil Mickelson’s psoriatic arthritis troubles are behind him. ¬†Psoriatic arthritis is a lifelong disease.

“We hope Phil Mickelson achieves his dream of becoming the number one ranked golfer and that he wows us with great golf for decades to come,” added Paranzino, of the patient advocacy group Psoriasis Cure Now. ¬†“But for many people with psoriasis and psoriatic arthritis, even those who can afford the latest treatments, their disease is a daily battle. ¬†That is why research is so important. ¬†We need a cure for psoriasis and psoriatic arthritis.”

Bottom line talking points for the 19th hole:

* Psoriatic arthritis is a serious disease, and can be debilitating.

* Many people with psoriatic arthritis cannot afford the type of treatment Phil Mickelson is on, the cost of which can easily exceed $15,000 annually.

* While Phil Mickelson is confident he has psoriatic arthritis licked for the long-term, many psoriatic arthritis patients find that even the best treatments lose effectiveness over time. The sad truth is psoriatic arthritis could cause him more trouble down the road, even with the world’s best doctors and best medical treatments.

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Sometimes, things just come to you. Funny how that happens; or is it?

I was having a meeting in a different building on campus earlier today, and a coworker placed some misdelivered mail in my hands. There it was, today’s closing post thought for Invisible Chronic Illness Awareness Week: Opportunities in Distress.

The newsletter article I reference was specifically about “alternative investments”. There is potential for an entire series of ideas on that concept, but tonight let’s focus on opportunities with those who don’t know; don’t know about the “invisible” pain all around them, that is.

Near the end of the morning meeting referenced above, a colleague began to tell two other gentlemen about his wife’s five-year struggle with autoimmune disease, and the accompanying pain, infections, and surgeries that they have endured over that time. “I had no idea”, one specific response, was even less telling than the look of shock on the responder’s face. “But she always looks so good”, he may have said to himself. We’ve heard that one before.

Therein lies a lesson; an “opportunity in distress”, if you will. When we are open and willing to share our hurts, pains, and struggles with others when the moment allows, we raise awareness, we potentially connect on a deeper level, and we may relieve a burden, ours or theirs, in some small way. You see, some are challenged to share their own struggles, and may grow from your example and personal story.

These struggles can be the pain and fatigue of Chronic Invisible Illness, or the invisible chronic pain in our souls that comes from sin or the presence of evil in this world. Irregardless, we are each called to promote awareness and caring for those who are struggling. And who among us has not struggled, physically, emotionally, and spiritually and some point in our lives?

Galatians 6:1-2 (Doing Good to All)

Brothers, if someone is caught in a sin, you who are spiritual should restore him gently. But watch yourself, or you also may be tempted. Carry each other’s burdens, and in this way you will fulfill the law of Christ.

So, as we conclude our focus of the week on the suffering that occurs in the shadows of our inattentiveness, the reluctance of others, or the emotional pain of sin, let us celebrate the same promise as the Psalmist from many centuries before us:

Psalm 68: 19-20
Praise be to the Lord, to God our Savior,
       who daily bears our burdens.
       Our God is a God who saves;
       from the Sovereign LORD comes escape from death.

Amen. LORD, come quickly. May I be loving and looking out until that day. Hallelujah.

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