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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