Wednesday, October 9, 2013

New Light Shed on Photosensitivity

New Light Shed on Photosensitivity among People with Lupus

Photosensitivity or abnormal light sensitivity is very complex and is a major symptom of lupus. The American College of Rheumatology (ACR) loosely defines photosensitivity as "a skin rash as a result of unusual reaction to sunlight."  Beyond skin rashes that can develop, exposure to the sun can cause those living with lupus to experience increased disease activity with symptoms such as joint pains, weakness, fatigue and fever.  Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light -- or both. 

Normally, skin and other cells that are sufficiently damaged die through a process known as programmed cell death, or "apoptosis." The body then gets rid of the dead cells.  But in lupus, apoptosis in the skin seems to occur more often than it should, which may in turn lead to more inflammation and other complications.  In addition to worsening of skin lupus lesions, many patients also experience more generalized skin or systemic reactions to light that are not their typical skin lupus. 

According to the ACR, photosensitivity in lupus is determined by clinical examination or by patient history of unusual reaction to sunlight.  It is important that physicians are able to recognize the varied manifestations of photosensitivity to ensure proper management of lupus. 

Now, a new, small study conducted by Victoria P. Werth, MD and colleagues at the University of Pennsylvania sheds new light on photosensitivity among people with lupus.  The study, published in the Journal of the American Academy of Dermatology, characterizes frequency and types of abnormal responses to sunlight in patients with different types of lupus, as well as the association of these reactions with systemic lupus.  A pilot study to examine different cell types and numbers of these cells in the skin of patients with and without systemic reactions to light was also performed.

While the pathophysiology of photosensitivity is likely to vary depending on the type of reaction(s) experienced by patients, the researchers explain that defining what is meant by photosensitivity is important in evaluating the effectiveness of treatments that may impact this important problem and in further recognizing the symptoms that fulfill criteria for photosensitivity in lupus patients.

The Lupus Foundation of America is dedicated to finding new ways to better understand and treat lupus, and we thank Dr. Werth and her colleagues for their continuous efforts to help solve the cruel mystery of lupus.  More information about photosensitivity can be found here.

More about the Study

In the study conducted by Dr. Werth and her colleagues, 83% of lupus patients reported having some form of photosensitivity.  Overall, worsening of skin lupus in response to sunlight was reported by 69% of the group.  Many people reported early transient skin lupus lesions that occurred after a few hours to a day and then resolve within a week, while others had lesions that occurred early after sun exposure, but persisted for a few weeks to months.  About 10% of people noted the worsening of skin lupus in response to sun happens only after a number of days.  60% of patients who felt their skin lupus worsened after sun exposure also had other reactions to the sun.  Some patients report a transient skin eruption after sun exposure that was not their typical skin lupus, termed polymorphous light eruption (PMLE)-like reaction.  Others had a generalized sense of itching, stinging, or burning of skin that affected their skin, but without a skin eruption.  Lastly, 33% of patients had systemic symptoms after sun exposure, including joint pain, weakness, fatigue, or headaches.  These different types of reactions can occur sometimes in the same patient.

The researchers found no relationship between race and any photosensitivity presentation.  Subjects with generalized cutaneous reactions (PMLE-like and sting/itch) and those who experienced sun-induced systemic symptoms of joint pain, weakness, fatigue or headaches, tended to have more systemic lupus disease activity.  The study noted a novel subset of CLE patients who experienced systemic reactions after sun exposure despite not meeting criteria for SLE.  A small study of a subset of the photosensitive patients had a greater density of specific types of inflammatory cells in normal skin compared to those without systemic symptoms.

The results are based on self-report by patients using a photosensitivity questionnaire that is currently undergoing further validation.  The patients predominantly had cutaneous lupus, with or without systemic lupus.  The findings in patients with primarily systemic forms of lupus may be different.

Tuesday, October 8, 2013

Highs -n- Lows Living with the Disease

Wednesday, October 9th

Another beautiful morning
Today's high will again be in the 70's. :-) So beautiful!

This morning there is such a beautiful sunrise...many shades of red.

Yesterday, we went to Des Moines to visit Francines mother, Beth.  She looked really good but you can see her health had declined. She is unable to feed herself, walk and she has lost her ability to carry on a conversation.  :-( After visiting with Beth, we went out to eat with Brad, Francines brother.  It was so good to see him and to catch up on what's going on in his life. 

After visiting with Brad we headed back to Council Bluff...it's about a two hours drive. 
We stopped at Hyvee for groceries and went over at Paige's, Francine's daughter, for supper.  I haven't seen Paige's son Lincoln in person yet.  Many pictures...he is so adorable and a lot of fun. :-)

Today we are taking it easy...I had a lot of swelling and pain after our long day, yesterday.  My face and neck are red also :-(
Tonight we have bible study, worship and prayer.  :-)

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It may be more natural or even popular to trust in your circumstances, your success, or the opinions of others. But God asks you to put your full trust in Him—to believe and apply what He’s promised in His Word more than anything else. When you do, you’ll have the peace, joy and fulfillment you’re looking for.

But living this way doesn't just happen; it has to be on purpose. We all need help to make good choices, overcome worry and anxiety, and keep a positive attitude.

Keep your focus on God and receive what you need from Him. You’ll also be encouraged with life-changing promises from God's Word that you can quickly and easily apply in your own life.

As you draw closer to God and learn to trust Him completely, you can enjoy your life — no matter what you’re facing.
I have been blessed...

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Today's Bible Study

Can You Get Away with Sin?

Read | Galatians 5:19-25

If you planted several apple seeds in your front yard, what would grow? Apples, of course! It is foolish to plant apple seeds but then expect to reap a crop of oranges, isn’t it?

Now, let’s take that little question a step further. If you planted seeds of sin in your life, what would grow? Sadly, the result is just as logical as the consequence of sowing apple seeds.

Why, then, is the answer so obvious when we’re talking about fruit, yet so elusive when we’re dealing with sin in our own life? Many people who freely engage in wrong activities are shocked and dismayed to discover the disastrous results that always follow. Why are they surprised? It is probably because they never actually think of themselves as planting seeds of sin; rather, they see themselves as simply “having a good time.”

This is a trademark maneuver of Satan’s. With temptation, he always offers us one thing but then delivers something completely different. The good we think we are getting turns sour before we can fully enjoy it. That is because the Devil can offer no lasting joy; he serves up only lies and destruction.

Read today’s passage and ask yourself, Am I planting seeds of the flesh or seeds of the Spirit? Do I want to reap the consequences of sin, or do I want a harvest of spiritual fruit?

There is simply no comparison between the two options. As a matter of fact, you might say it is the difference between apples and oranges.

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, October 8th

Another beautiful morning! 
I am sitting in Francine's living room watching the sun come up over the lake.  
My drive down to Council Bluff went good...it was around 5 1/2 hours.  When I arrived Francine told me my neck and cheeks were pretty red from the light through the car windows. :-(

Today, we are driving to Des Moines to visit her mom in a memory care facility and meeting up with her brother, Brad for lunch.  :-) Francine's family was like my second family...
I slept really good last night and very little pain...
Francine and I spent a lot of time last night reading bible scriptures and listening to worship and praise music...  :-). So peaceful...

So many things to be thankful for...
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Today's Bible Study

Obstacles to Righteousness

Read | Galatians 5:16-17

Just because something is natural or “only human” does not mean it’s right or beneficial for us. In fact, we actually hinder the things of God in our life when we set our mind on things of the flesh—which can include sinful attitudes, ideas, and habits or even common worldly aspirations like money, sex, prominence, and power. The reason is that the natural man does not receive the things of God (1 Cor. 2:14).

Notice that there is nothing wrong with eating, but the Scriptures categorize gluttony as sinful (Prov. 23:20-21). Nor is there anything immoral about sexual intimacy when it is practiced within the God-given parameters of marriage. As long as our desires and appetites are subdued and brought under subjection to the Holy Spirit, our fellowship with God can continue harmoniously. But when yearnings are unrestrained, our closeness and communication with the Lord are obstructed.

In order to give the Holy Spirit control of our life, we must be persuaded that we cannot live righteously in our own strength. Most of us realize that it’s a struggle to live in a God-pleasing manner; to do so requires that we surrender our entire being to Him—mind, will, emotions, and conscience. Ask God to reveal areas of weakness, and then give Him each frailty as it comes to light. This needs to be done not just one time, but daily. Every morning when you wake up, it’s wise to pray, “Father, today I’m totally Yours. I can’t live the Christian life on my own, but I pray that You will live through me.”

Another great date!

Monday, October 7, 2013

A Sweet-Smelling Savor - Joni and Friends

Joni and Friends Daily Devotional   

A Sweet-Smelling Savor

"Thanks be to God, who always leads us in triumphal procession in Christ and through us spreads everywhere the fragrance of the knowledge of him. For we are to God the aroma of Christ among those who are being saved and those who are perishing. To the one we are the smell of death; to the other the fragrance of life."    
2 Corinthians 2:14-16
 
The wind shifts in October, carrying on the breeze the scent of a seasoned wood-fire from a neighbor's chimney. Lean out your window, draw a deep breath, and you can smell the scent of pine from a nearby woods. Or someone baking an apple pie next door.   I love this time of year because of the wonderful new aromas in the air.  It's amazing how a scent -- even a fragrance -- evokes powerful feelings.
 
Today's verse speaks of the power of fragrance. It's another way of saying, "I want to live in a way that will perpetually remind God of the obedience, sacrifice, and devotion of the Lord Jesus. I want my words and deeds to bring to God's mind fragrant memories of the earthly life of His Son."
 
What's more, our godly words and deeds not only remind God of His Son, but remind others of Him, too -- whether they believe in Jesus or not. To be obedient among the fellowship of believers is to carry with you the fragrance of Christ. To be obedient in a wicked world is to remind others of the stench of death. But that's not bad! Sometimes the wicked need to face their own mortality to be awakened out of their spiritual slumber. No matter how others interpret it, just be certain to waft Jesus their way.
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The smell of hot apple pie brings to mind deep-rooted memories. A wood fire or the scent of pine will do the same. In the same way, your life of obedience can please God with an aroma that reminds Him of Jesus. Be fragrant. Be a sweet smelling savor. Be obedient and, thus, be God's memory of His Son.
 
May my life give off the scent of Christ to all those around me. And, Father, may my obedience bring a smile to You as I strive to be more like your Son, Jesus. Amen
 
Blessings,
 
Joni and Friends
www.joniandfriends.org

A Ministry of Today's Christian Woman - Encouragement for Today

"But as for me, how good it is to be near God! I have made the Sovereign LORD my shelter, and I will tell everyone about the wonderful things you do."

Psalm 73:28

Encouragement for today

The psalmist affirms it is good to be near God. Note that it's a choice: "I have made the Sovereign LORD my shelter." When you choose to dwell in God, you can see all the wonderful things he does (rather than focus on the evil around you). Then you will want to tell everyone about God's goodness!

—Diane Eble, author of Abundant Gifts: A Daybook of Grace-Filled Devotions

Highs -n- Lows Living with the Disease

Monday, October 7th

Another beautiful morning... :-)
Paul brought me a take home plate from the church dinner :-) Way more than I could eat.  I only  ate a third of what Paul brought home...it was so good...   :-) Later in the evening I was trying to figure out why I was hurting so bad and itching all over.  
I realized I ate some mashed potatoes and gravy???. :-( Whoops I was enjoying it so much I didn't give it a second thought or was it from running outside not covered...it was just for a few seconds to empty something in the compost pile ??? :-(

Some days I feel like I'm being tortured...last night and this morning is one of those... :-( This morning I am still really itchy, swollen and sore.  Woke up around 2am and couldn't get back to sleep. Finally got out of bed at 5am to take my morning meds to see if that helps. This morning I am calling Dr Danning for relief.  :-) I waited too long...I thought I could wait for my next Dr appointment but I can't. :-(

Yesterday, I received another call  from Milestone letting me know Gloria was having another difficult day...she asked if she could take her over to the emergency room to have her checked out...I wasn't sure how it would go... :-).

The nurse called me back a few hours later to let me know she was able to get her out of her car with a lot of fast talking :-). They did a urine test but they didn't find any infection or blood in her urine.
They decided to make some changes to her medication to see if it will help with her behavior.  I bring her back in for a follow-up on Monday, October 14th...
I am so glad she was seen :-) Now we don't have to wonder or worry.  :-). So thankful...

Today, I am driving down to Council Bluffs, IA to visit good friends. :-) Hopefully the drive goes good and I sleep well...my bed is so comfy...
I'm going to try to be careful not to eat things I shouldn't be eating.  I return on Thursday. 

So thankful for all I can do...           ---------------------------
Today's Bible Study

Shutting Our Ears to the Lord

Read | James 1:22-25

When we fail to listen to God, we pay attention to wrong voices, fall prey to deception, and refuse to submit to the Lord. All three negative results are evident in Adam and Eve’s decision to eat from the forbidden tree. What other consequences result from shutting our ears to God?

First, we will make decisions based on their appeal. To entice Adam and Eve to disobey, the Devil twisted God’s words and misused legitimate desires the Lord had given to the couple. We have the Holy Spirit to teach us how to keep our appetites and desires in check.

Second, we will excuse our wrongdoings and blame others. Adam pointed a finger at Eve, and she blamed the serpent. Satan can tempt us, but the responsibility is ours if we consent.

Third, we will experience divine discipline. Not only that, but others will also suffer when we disobey. The first man and woman were cast from God’s presence, and their lives became much harder. Sin entered their family and led to strife and death—their son Abel was murdered by his brother Cain. Adam and Eve’s choice affected all future generations as well. Through them, sin entered the world and resides in us (Rom. 5:12).

Fourth, we will miss out on God’s best. The first humans lost both Eden’s splendor and perfect communion with the Lord. Unconfessed sin will separate us, too, from fellowship with the Father.

Closing ears to God’s voice can happen in a moment’s time. Safeguard yourself. Commit to genuine listening: hearing, remembering, and doing what God says.

Another great day!

Sunday, October 6, 2013

The Wrong Kind of Expert - Joni and Friends

Joni and Friends Daily Devotional   

The Wrong Kind of Expert

"They never stop sinning...they are experts in greed."    
2 Peter 2:14
 
I have vivid memories of what it was like to play hockey, ride a horse, and swing a tennis racquet. When it comes to tennis, my mom was my best coach. She possessed great finesse and tried to pass good ball-and-racquet skills on to me. But I was a stubborn learner.
 
I recall my backhand. I thought I was doing pretty good, but my wrist was bent, my grip was wrong, and my body position wasn't square with the net. In other words, I had gotten very good at doing something very bad. Through hours of practice away from the coaching eye of my mother, I became an expert in poor backhand.
 
Have you gotten proficient at doing something very wrong? Peter in his epistle talks about people who practice doing the wrong thing and become experts in sin. They train themselves that way--with years of practice. We need to train ourselves to do the right thing. Paul tells Timothy to train himself to be godly. He says, "For physical training is of some value, but godliness has value for all things, holding promise for both the present life and the life to come" (1 Timothy 4:8).
 
As you live, day in and day out, you are either practicing godliness or selfishness. It has been said, "Sow a thought, reap an action. Sow an action, reap a habit. Sow a habit, and reap a character." If you want to do what is right, then you had better train yourself in godliness. That means practice--every day. Remember, others are watching! "Let us, therefore, make every effort... so that no one will fall by following their example of disobedience" (Hebrews 4:11).
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Don't get good at doing something wrong. Instead, make a choice today to live right. Train yourself to be godly.
 
Father God, You know how easily I fall into bad habits in my thoughts, heart, and actions. Show me how to break one habit and how to learn a godly one. Keep me from letting selfishness reign. Amen

Blessings,
 
Joni and Friends
www.joniandfriends.org