Tag Archives: Amyotrophic Lateral Sclerosis or ALS

Life Goes On

Today’s guest-writer with his decease knows that  whether we’re going through the worst of times or the best of times, history and our own experiences show us that life does go on.

Though we can not say this to everybody at any time.

“There is an appointed time for everything.
And there is a time for every event under heaven —
A time to give birth and a time to die…
A time to weep and a time to laugh;
A time to mourn and a time to dance.” (Ecclesiastes 3:1-4)

I thought about the above passage last week when our daughter gave birth to a beautiful seven pound girl on Wednesday, then a close friend died of cancer on Friday – “A time to give birth and a time to die.”

Twenty years later after our guest-writer Bill was diagnosed with ALS he still goes strong and inspires many people with what he writes on the net, reaching many in countries who would never come to. His writing are clearly inspired by God’s Spirit, Who is able to give incredible powers to those who are willing to give themselves in the hands of God.

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To remember

life’s great highs + lows = day-to-day life > seem so trivial

we tell ourselves that we’ll never again settle for the trivial life

our emotional or spiritual highs & lows gradually find their old balance => return to a mundane normalcy

=> root cause of much of addiction + depression we see around us

answer? = “Rejoice with those who rejoice, and weep with those who weep.” (Romans 12:15)

focus not on the personal and professional “highs” missed => make  conscious effort to focus on  good things in life

Life = hard == much easier if we surround ourselves with people that won’t only rejoice with us in the good times but will also support us in the difficult times.

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Preceding: Why are you afraid?

 

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Further reading

  1. What Would You Say?
  2. Time slowed
  3. Courting Joy
  4. Still Life
  5. Survivor or Fighter?
  6. 5 Things You Need to Know About Life (1 min read)
  7. Opportunity Meets Impression! (2 min read)
  8. The Road Ahead
  9. Solace Can be Found
  10. It starts again….
  11. Silent Screams
  12. Just
  13. On the topic of crying
  14. Fibromyalgia and remission
  15. Suicidal thoughts
  16. Behind the face,  the mask. 
  17. Dignity
  18. 005 Coping with depression
  19. Losing Friends, Making Friends
  20. Experimenting
  21. Daily Shorts – Can I Run Away?
  22. Perfect Love
  23. Depression I
  24. It feels weird 
  25. The Steps of Falling Apart
  26. Better Days: Creating Change
  27. 02.47

Unshakable Hope

“Life Goes On”

Whether we’re going through the worst of times or the best of times, history and our own experiences show us that life does go on. This is true, but I don’t recommend saying “life goeson” to someone who is grieving the loss of a loved one.

“There is an appointed time for everything.
And there is a time for every event under heaven —
A time to give birth and a time to die…
A time to weep and a time to laugh;
A time to mourn and a time to dance.” (Ecclesiastes 3:1-4)

I thought about the above passage last week when our daughter gave birth to a beautiful seven pound girl on Wednesday, then a close friend died of cancer on Friday – “A time to give birth and a time to die.”

Those who are grieving and those who are rejoicing have this…

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Filed under Being and Feeling, Lifestyle, Positive thoughts, Re-Blogs and Great Blogs

Why are you afraid?

2001 September 9 was the day the world changed totally, for the Western world. A shock-wave of fear started to go from one nation to the other from the West to the East, bringing horrible terrorist attacks in America, Spain, France, Belgium but also further in the East where Islam and Hinduism are practised more.

In our regions lots of people are caught by the trap of fear and by the persuasion by politicians and terrorists alike.

Those who misuse the name of Allah/God want not only to hit those who do not believe in God. They also want to frighten those who believe in God and want to bring them away form their faith-group giving in to those who show the strongest.

We always should know that we should not fear man, but more fear God and should listen to His commandments.

When taken by fear for what goes on around us let us always remind ourselves what Jeshua thought and find peace in our hearts by giving ourselves to the Only One True God.

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We got to hear a lot of spectacular things that happened in the past, which went beyond man’s power. Today still the majority of people do not believe in those miraculous things that happened in the past. but they also are blind for the miraculous things that still happen every day in this time space.

Strangely enough often people only go looking for God, or start blaming God, when things go wrong. During those bad times that we’re looking for Him we are given the opportunity to get to know god better and to grow in faith.

We all should remember that god is willing to come to those who search Him.

“You will seek Me and find Me when you search for Me with all your heart.” (Jeremiah 29:13)

Today’s guest-writer who at the age of 36 was diagnosed with a terminal disease called Amyotrophic Lateral Sclerosis, or “Lou Gehrig’s Disease” (after the famous New York Yankee’s player that died from it), did not let his illness get him down on his knees forgetting how even he also could help many people. Not being pushed back by his health crisis impacting his emotional as well as his financial life.

He became fully aware how our emotional and spiritual life and our relationships etc.,

“Every part of our lives” are connected to one another like parts of an engine and one part breaking effects the performance of the whole engine.

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses, knowing that he would be limited in his walk and handling, his trial has taught his family that the only way to experience genuine and consistent hope, peace and joy in the midst of a trial is to view our life and situation through God’s eyes.

He writes

For me, learning this was a long and difficult, but rewarding process; an ongoing process that will continue to the day I go to be with God. {About Bill}

Several people may undergo lots of physical problems, being sick and time after time to recover from this health issue. At such moments it is important to continue your way and to come out of your battle feeling spiritually stronger than you were before your battle with

that which did not kill me.” {Trials Can Make Us Stronger}

As someone who has relied on caregivers for even longer than Nietzsche had to (ALS, not Syphilis), our guest-writer empathize with the helpless, the suffering and their caregivers. But feels great sympathy for those that do not place their hope and strength in Christ, regardless of the state of their health. He writes

I feel sympathy because, like Nietzsche, the “strength” and “hope” that they derive from physical/temporal pleasures do not provide genuine and lasting joy or peace. As King Solomon concluded, it’s “all vanity.” {Trials Can Make Us Stronger}

On one of his articles Dawn Marie answers:

“If Christ is our hope, the pleasures we enjoy on earth will be so much more enjoyable …”

I thanked God yesterday for: bringing us to a new home where we are within walking distance of a Ice Cream Store, the new grass growing outside that’s beginning to cover up the mud, my new hospice patient who is the biggest Army football fan I’ve ever met, and the strength to console our son who is suffering through a broken, discinigrating marriage. How is it that a God so big can love someone as small as me so much to bring me His hope in ALL which touches me.

In these days were the west seems to be tested a lot, those trials may force us off of the proverbial fence.

Tested faith is enduring and overcoming faith; it’s faith that can empathize with and encourage others who find themselves in the midst of a raging storm – those who are feeling as if Jesus is asleep in the boat.

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Preceding articles:

Where were you when the world stopped turning?

Nailed to our chairs, never to forget

The Nine Eleven Scar

Taste of Dust

A Prayer for 9-11

When will it stop

Next: Life Goes On

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Additional articles:

  1. Stronger than anything that wants to destroy
  2. Economic crisis danger for the rise of political extremism
  3. A world with or without religion
  4. Being Charlie 8
  5. For more than Three thousand people fifteen years ago this world came to an end
  6. Wrong choices made to get rid of Assad
  7. Coming closer to the end of 2015 and the end for Donald Trump as presidential candidate
  8. 2015 Human rights
  9. 2015 the year of ISIS

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Unshakable Hope

“And behold, there arose a great storm on the sea, so that the boat was being covered with the waves; but Jesus Himself was asleep. And they came to Him and woke Him, saying, “Save us, Lord; we are perishing!” He said to them, “Why are you afraid, you men of little faith?” (Matt 8:24-:26) 

I suppose that even the most faith-filled Christian would experience some level of fear if they found themselves in a situation like the above. But I know that a doctor delivering news of a life-threatening diagnosis, a loss of a job and insensitive debt-collectors calling day-after-day, can instill that same kind of “Save us, Lord; we are perishing” fear.

Unfortunately, we don’t really know if we have genuine faith until that faith is tested. I believe this is the reason that Jesus allowed His disciples, and us, to go through so many of these nail-biting…

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Filed under Being and Feeling, Crimes & Atrocities, Lifestyle, Re-Blogs and Great Blogs

Though disabled in the eyes of society able to do great things

How common are specific disabilitiesHow many people do not take it for granted that we can make our bodies move about the world as we command them to. But lots of people have no such blessing. There are even people who remain conscious but are unable to move, communicate, or even breathe on their own. For them their body may be like a prison in which they are closed up and have no prospect to become liberated. Can you imagine how it must feel , knowing you never get out of that prison, which limits you to one particular place where no easy communication is possible?

People can be periodically blocked or not able to move any more. Others can have periodic paralyses as a genetic disorder characterized by episodes of sudden muscular paralysis. Again others may have got the bad news they shall become more and more limited in what they can do to end up to be fully limited in their actions and having to face death, totally paralysed. For them it is not just for minutes or hours that muscles become flaccid and useless. For several people there are no such episodes which are reversible with treatment of abnormal potassium levels, and in most cases aren’t fatal.

What would you do if you come to know your body is deteriorating?

English: 1934 Goudey baseball card of Lou Gehr...

English: 1934 Goudey baseball card of Lou Gehrig of the New York Yankees #61. PD-not-renewed. (Photo credit: Wikipedia)

What if you are a lover of movement, a dancer or a baseball player like Ludwig Heinrich Gehrig, better known under Lou Gehrig and his byname the Iron Horse or Iron Man (born June 19, 1903, New York, New York, U.S.—died June 2, 1941, New York City). He was one of the most durable players in American professional baseball and one of its great hitters, but had to hear terrible news after a year of speedy decline, falling several times, not having strong wings any more, in 1939, getting diagnosed with a rare nervous system disorder, amyotrophic lateral sclerosis (ALS); this disease has come to be known as Lou Gehrig’s disease.

A sportswriter observed that Gehrig looked “like a man trying to lift heavy trunks into a truck.”

When the Yankees arrived in Detroit for a May 2 game, Gehrig was hitting .143. He took himself out of the lineup, telling McCarthy it was “for the good of the team.” Gehrig took the lineup card to home plate with Babe Dahlgren‘s name at first base. The Detroit fans applauded for two minutes. Gehrig tipped his cap and disappeared into the dugout and the record books. He would never play another game. His streak of 2,130 games was a record that would stand for 56 years. He finished with 493 home runs, 535 doubles, 162 triples, a .340 batting average and 1,990 RBIs, third-highest among all major leaguers. {Encyclopedia of World Biography | 2004: Lou Gehrig}

On May 2, he took himself out of the Yankees’ lineup, and he never played baseball again. He left baseball with a career batting average of .340, with 493 home runs and 1,990 runs batted in, all during regular season play. In seven World Series (34 games), he batted .361, hit 10 home runs, and drove in 35 runs. {Encyclopedia  Britannica – biography:Lou-Gehrig} He was elected to the National Baseball Hall of Fame in 1939.

What if you start feeling those early symptoms which may only involve mild weakness, slurred speech, or twitching?

However those patients who are slowly locked inside their bodies, losing their ability to control any movement should not loose hope for what they can achieve. Even when in the inevitable conclusion, the unlucky victims getting unable to even speak or swallow there are ways out to be able to communicate. Though they might come completely dependent upon others for total care, some of the victims have proven to be stronger than their disease and mad sure they could mean something special in our society.

When sensation and the mind are left intact, leaving the patient helplessly aware of their imprisonment it is a matter of daring to not allow the adversary pull you down. Do not allow yourself being pulled down neither by those around you, who may loose patience with ‘a case like you’, but use that still active brain to show the world you are able to think properly.

English: Professor Stephen Hawking in Cambridg...

Professor Stephen Hawking in Cambridge, UK. Español: El profesor Stephen Hawking en Cambridge, Reino Unido. (Photo credit: Wikipedia)

Renowned physicist Stephen Hawking, who has surpassed typical survival expectations by decades, is one of the most beautiful examples how a person can be stronger than his captor or retainer. At his last visit in Belgium, last Autumn, he gave a marvellous interview on the Flemish television, where he was followed for his whole stay in that small country where they look up at that grate man.

After having been an outstanding student at St. Alban’s School he received a first-class honors degree in physics at University College, Oxford (B.A., 1962), Hawking set off for Cambridge University to begin studying at Trinity Hall, (Ph.D., 1966) and looking at the themes of cosmology which would preoccupy him throughout his life.

Stephen William Hawking was elected a research fellow at Gonville and Caius College at Cambridge. Though it was already in the early 1960s that Hawking contracted amyotrophic lateral sclerosis but that did not stop him to continue with what he liked best. He continued to work despite the disease’s progressively disabling effects and became considered the most insightful theoretical physicist since Albert Einstein. with good reason he gained a worldwide following, not only among other scientists, but also among a great many laypeople and as an author and lecturer, he has achieved celebrity status.

Black & White photo of Hawking at NASA.

Stephen William Hawking, CH, CBE, FRS, FRSA , English theoretical physicist, cosmologist, author and Director of Research at the Centre for Theoretical Cosmology within the University of Cambridge. – Here seen at NASA in the 1980s.

For religious people his explanation of the Big Bang theory may be very revealing. Hawking is not afraid to question such idea if there had been a beginning to space-time (a big bang), or whether one state of affairs (one universe, to put it loosely) simply gave birth to another without beginning or end. He also dare to tell that there is so much we do not know yet and that we may not underestimate the force of nature, that new universes might be born frequently through little-understood anomalies in space-time. He also investigated string theory and exploding black holes, and showed mathematically that numerous miniature black holes may have formed early in the history of our universe. When humans develop the unified field theory, said Hawking, they will “know the mind of God.”

His goal to come to a complete understanding of the universe,

“why it is as it is and why it exists at all.”

is something he nor we shall be able to reach, but for sure he has proven that we do not allow a disease to imprison or chain us and to have it to make us useless. He is the living proof, that though disabled, a human being can be able to do much.

 

Be it ALS, MS, AS, Transverse myelitis, High-Level Quadriplegia, Akinetic Mutism, Fibromyalgia, Locked-In Syndrome or any other nightmare diseases, let it not destroy your mind, your way of thinking your way of being yourself a “I Am” wroth being.

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Please do find also a list of some famous and well known people with various disabilities and conditions: Famous People with Disability

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Disability Videos
Selection of video clips providing information for and about persons with disabilities in video format.

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Preceding articles:

What would you do if…?

What would you do if…? Continued trial

See the conquest and believe that we can gain the victory

The Goal

Cosmina Craciunescu looks on Positivism

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Further reading:

  1. Civil Rights Worldwide – Disability
  2. Silence as Acquiescence: On the Need to Address Disability Stereotyping in Kocherov and Sergeyeva v. Russia
  3. What does body identity mean today?
  4. Life in chronic pain
  5. Access for All: Agenda for Americans with Disabilities – 3 New Bills
  6. Disability: Benefits, Facts & Resources for Persons with Disabilities
  7. It’s All Relative
  8. We can do Anything, but hear!
  9. “The Danger of Silence” by Clint Smith
  10. I will not be defined
  11. Schrodinger’s Chiari
  12. Your daughter has ABS…
  13. My Fibromyalgia Awareness Day
  14. Fibromyalgia & ME/CFS Awareness Day
  15. The Burden of ME/CFS (Chronic Fatigue Syndrome)
  16. Ableism & Hate Crime – Disability
  17. Suffering with M.E..
  18. Bhil family struggles with three disabled members
  19. DWP: Disabled Woman, Persecuted.
  20. The Daily Fix: The Jeeja Ghosh judgement is an important moment in the fight for disability rights
  21. Entertainment – Disability
  22. When Snapchat Filters Mock Your Medical Condition
  23. It’s wicked to mock the afflicted – Kenneth Howerd…
  24. Leader of the PACK
  25. To J.K. Rowling from Us
  26. The Book That Changed My Life The Most
  27. Assistive Technology – Disability
  28. Update and NoobGrind GTX 1080 article
  29. The Scars From Which I Have Grown
  30. Disability in the Church
  31. Pastor Lingerfelt, Do We Look “Retarded” To You?
  32. Want to Be an Awesome Ally for People with Disabilities?
  33. Over-Explaining
  34. Sunshine or Rain
  35. When Strength Isn’t Enough
  36. A Circus Stole Some of My Monkeys!
  37. Intrview: My Story – Living with Aspergers Syndrome
  38. “I just wanted to die” – living with leprosy in Myanmar.
  39. What is on your bucket list?
  40. She might have lost both her arms and legs but that’s not stopping Shalini from participating in a marathon contest!
  41. Lessons I have learned
  42. The cost of living (with a disability)
  43. Bringing Disability Accessibility to Colchester: How YOU Can Help
  44. Euphemistic Terminology
  45. Time Passes…Life Goes On…Even Under Seeming Odds
  46. Bad to worse to… hopeful?
  47. Not much to say
  48. Life is Short, True Love is Rare….

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Filed under Being and Feeling, Health affairs, History, Positive thoughts, Uncategorized, Welfare matters

What would you do if…?

Lots of people encounter many struggles in life. Some get to learn how to cope with them, others get pulled down so much that they do not see any reason any more to live.

All have good and bad moments in life and whether we’re going through the worst of times or the best of times, history and our own experiences show us that life does go on and that we are just a very tiny atom in it

In this world there are people who, like Ray who grew up in London, moved away and travelled the world, ending up back where he started, are not able to raise their arm but found ways using other parts of their body to communicate or to move things, though at times it may feel for them like they might as well be trying to move the earth.

It is not the Most High Creator Who brings all that badness over us. But it is Him Who give us the opportunity to work around it and to become stronger, if we allow Him working in our midst.

We should not fear man nor fear worldly situations or diseases, but should fear God and come to trust and honour Him, putting our ‘tiny’ hand in His Big Hand, to be carried through life.

There are no rules to how life plays out. We have no control over it. The only thing we have control over is how we face those challenges. We are not so much a product of the challenges placed before us as we are a product of how each of us has faced those challenges. {To Live And Ride With ALS}

Please do find what Bill of Unshakable hope has to say and look how he manages to cope with the terminal disease called Amyotrophic Lateral Sclerosis or ALS or call it “Lou Gehrig’s Disease”.

He does not believe God causes trials and he doesn’t believe we will ever fully understand, at least not in this life.

But, whatever other reasons God has for allowing trials, I discovered two big things that He accomplishes through our trials; He helps us reset our priorities and forms our character. (Obviously He had a lot of work to do on me).

For sure he is not the only one to whom God has a lot of work to do. For the creator of this and some other lifestyle magazines had also to go through two near death experiences before he decided to work more for God. It does not mean, that took all the pain and frustrations away from him, but he gets encouraged by feeling the Hand of God at work in him … and that keeps him going….

One night, about a year before Bill was diagnosed with ALS, he and his wife Mary were up late watching “Nightline” on which Ted Koppel was doing three nights of interviews with retired college professor Morrie Schwartz who also had ALS and was sharing his life-lessons with Ted Koppel just as he had done previously with one of his former students named Mitch Albom who compiled these life-lessons and wrote a best-selling book titled “Tuesdays with Morrie.”

Bill has one vivid memory from watching those interviews

having to rely on his wife + caregivers for virtually all of his needs = helpless he was

Bill turned to Mary and told her

I would rather just go to heaven than live trapped in my own body like him.

a year after making that statement = diagnosed with same “trapped-in-your-own-body” disease

=> hastily-made statement began to haunt + taunt me

=> change view + began trying to do best to live one day at a time <= grace of God in me, urging me to keep going

Hastily-made statements carelessly uttered by healthy people = spoken out of pride = cannot comprehend grace of God <= self-reliant, self-righteous + just plain selfish

Trials cause us to reexamine hastily-made statements we’ve made before the trial, when we so carelessly said what we’d do if this thing or that thing happened to us.

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Preceding articles

The Greatest Fear

Fear in your own heart or outside of it

Fear, struggles, sadness, bad feelings and depression

Phantom Of Dreams

How to Find the Meaning of Life and Reach a State of Peace

Watch out

Walking in the Light of Life

See the conquest and believe that we can gain the victory

When the world rages, let it rage, but let us not fear it

Those steady drips, those small steps!

My tales will be beautiful

For those Christians who say they are the Victim

Christians remaining hidden not sharing the gospel

How To Get Started In Sharing Your Faith As a Christian

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Additional reading

  1. Struggles of life
  2. Pain and Suffering is inevitable but Misery is optional
  3. Good and bad things in this world
  4. Your struggles develop your strengths
  5. A way to prepare for the Kingdom
  6. Not holding back and getting out of darkness
  7. Science, scepticism, doubts and beliefs
  8. If there is bitterness in the heart
  9. Emotional pain and emotional deadness
  10. Evil in this world not bringing us down
  11. Dying or not
  12. Life Goes On
  13. Trouble is coming
  14. End of the Bottom Line
  15. A small trouble is like a pebble
  16. She who sows thistles will reap prickles
  17. Do not be so busy adding up your troubles
  18. Do the appropriate for a friend
  19. A Breath for tomorrow
  20. Shelter in the morning
  21. Luck
  22. Rejoice even though bound to grieve
  23. From pain to purpose
  24. Faith because of the questions
  25. Hope by faith and free gift
  26. 1 Corinthians 15 Hope in action
  27. May reading the Bible provoke us into action to set our feet on the narrow way
  28. You God hold the future
  29. Gaining Christ, trusting Jehovah
  30. God is my refuge and my fortress in Him I will trust
  31. Trust God to shelter, safety and security
  32. Songs in the night Worship God only

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Further reading

  1. ALS Awareness Month
  2. Pesticide Use Linked To Alzheimer’s, Parkinson’s & ALS
  3. Why Me?
  4. To Live And Ride With ALS (Part ll)
  5. The Sacred In The Mundane
  6. The Bread Of Affliction
  7. I’m Sorry
  8. Cape and Tights – My Grandmother’s Struggle with ALS
  9. 2016/05/09/ Repost
  10. Mother With ALS Paints Again
  11. Kirkus Review of My Perfect Imperfections
  12. The Reason I Run, Chris Spriggs – a review
  13. The Walk
  14. Army vet starts ‘#22kill push up challenge’ to help other veterans
  15. One man’s poison is another man’s….
  16. The Story So Far…
  17. Can you see it?
  18. The Woman Behind The Blog
  19. The Privilege of Growing Old
  20. How Famous Researchers Work: Stephen Hawking
  21. Advocates for Rare Diseases

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Unshakable Hope

One night, about a year before I was diagnosed with ALS, Mary and I were up late watching “Nightline.” Ted Koppel was doing three nights of interviews with a retired college professor named Morrie Schwartz. Morrie had ALS and was sharing his life-lessons with Ted Koppel just as he had done previously with one of his former students named Mitch Albom. Mitch later compiled these life-lessons and wrote a best-selling book titled “Tuesdays with Morrie.”

I hate to admit this, but even after seeing the three nights of interviews and reading the book, I cannot remember most of the life-lessons that Morrie taught. But, I do have one vivid memory from watching those interviews; it occurred while listening to Morrie describe his daily routine – having to rely on his wife and caregivers for virtually all of his needs. After hearing how helpless he was…

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Filed under Being and Feeling, Educational affairs, Health affairs, Lifestyle, Re-Blogs and Great Blogs, Religious affairs, Welfare matters