Posts Tagged ‘Sjögren’s syndrome’

Philip’s 47 year wait to breathe “easy”

I hope you are doing well in spite of the hot summer sun.  The past couple of months have been more of a struggle for me than usual, at this time of year. When I need encouraging, I often go to one of my favorite books on living withBeingSickWell chronic illness, Being Sick Well by Jeffrey H. Boyd M.D., M.P.H.  This week in the book I read the true account of a severe asthmatic named Philip Holladay.

At age two, Philip developed severe asthma.  Sometimes his mother would look at him and run from the room sobbing.  No one would explain to Philip why she did this, or talk to him about his asthma. His family cared for his basic needs, but kept him at arm’s length, neglecting him emotionally.  Throughout each day he coughed up large amounts of mucus and gasped for air so loud,  you could hear him throughout the house.   He used his inhaler frequently just to breathe for a few more minutes.  (p186)  Everyday he woke up, this young boy  was amazed that he was still alive.

One day, he made a conscious decision not to associate with his two younger brothers for fear the world would reject them, as it had rejected him.   Students shunned him or made fun of him at school.  Some adults were disgusted by his symptoms, others could not look him in the eyes.  No one  reached out to him.  He slowly retreated into his own world, immersing himself in mathematics.

“When he was fourteen, in junior high and walking from one classroom to another, he suddenly stopped breathing.  He was simply unable to gasp any more air.  Alarmed, he rushed out onto the grass, took hold of the flagpole for support, grew weak and numb, and his vision dimmed.  Within minutes he would be dead.  A thousand kids walked past this dying boy.  Everyone looked, but they all turned away from his gaze.  As Phillip was suffocating, he gave up on the human race.  He wanted nothing to do with these peopleasthma21 who did not bother to call the school nurse whose office was just fifteen feet away. Philip had always gone to church but didn’t take it seriously.  He did not know if there was an afterlife.  He hoped there wasn’t.  If there were an afterlife, he wanted to be alone, with no humans to annoy him.  Then suddenly against all odds, air poured into his lungs, Philip survived.  Perhaps his bronchial muscles simply relaxed”.  p 187

After the above incident, he gave up on humans entirely, shunned everyone, and only spoke a word or two when necessary.

At 17, Philip had decided people invented God to comfort themselves. Being a mathematician, his logical mind could not make this decision without proof, so he set out to disprove God.  He read the bible from cover to cover only to find love within its borders.

Phillip lived in a loveless world, but had now found something he wanted to be a part of.  He wanted to be capable of loving people like Jesus Christ did.  He prayed a prayer to belong to Christ and then set out on a quest to change his life.  First, he had to learn how to communicate with people, so he joined a bible study.  He watched others relate and began to take baby steps himself.  Soon, Phillip emerged as a leader.  While majoring in mathematics at North Carolina State University, he served as a youth pastor.  He earned his Ph.D. and became more active socially.

At age 26 Vanceril became available as a research drug.  It was prescribed for Phillip.  For the firstFDA-phases-out-certain-inhalers-OCDIUEA-x-large time in his life, his asthma became less severe.   He began to feel as though he might have a future after all, and began to think about dating. He soon met Georgianna, a divorced mother of three , who was not put off by his coughing and wheezing.   She had experienced  an even more difficult life than Philip.   They fell in love and married.  To this day, Georgianna is his closest friend.

At age 47, some new medications were prescribed for Philip:Singular and Pulmicort.  They revolutionized his life.  He began to breathe as if he had no asthma.  The peak airflow of his lungs doubled, and became better than that of an average healthy person.  For the first time in his life, he could breathe through his nose.  (p189)

For Philip, because of the advances  in medicine, the latter part of  life is better than the beginning. What most people take for granted is a special gift to him each day of his life:unhindered breathing without gasping, coughing and pulling up mucus. He is no longer embarrassed or fearful of dying. He has peace of mind.   Philip does not even seem to have any residual bitterness or anger because of  the difficulties he experienced growing up.  As a professor of Mathematics at Geneva College in Beaver Falls, his students have many good things to say about him.  You can read some of them here at Rate My Professor.

While there are some people that do not agree with conventional medicine, Dr. Boyd has found during the research for his book Being Sick Well, that most sick people hold conventional medicine in high regard.  For me, having medication available has been a lifesaver.  I have been on hydroxychloroquine (Plaquenil) almost 12 years.  I am very grateful that my side effects are limited and I can live a pretty full life.  I am thankful  I do not have to take steroids or anything more powerful than Plaquenil at this point.  I have also been on cabergoline (Dostinex) or some variation of it for 20 years.  Without it, I would often suffer headaches several days a week, increased lupus symptoms and hyperprolactinaemia .

Every visit now, the doctor tells me the lupus may burn itself out someday.  Unless God intervenes, I doubt much will change with the Raynaud’s, Sjogren’s Syndrome, and osteoarthritis however.  But, every so often, with his approval,  I try to cut my hydroxychloroquine (Plaquenil) dosage in half.  I usually only make it 10 days to 2 weeks.  Recently, I pushed it to a month with my symptoms increasing with each passing week.  I was a little discouraged to have to go back to full dosage, until a friend reminded me how thankful I should be for medicine that helps me.

It can be easy to lose sight of the many medical blessings we  have and focus on the health challenges instead.  Not Philip.  He is living each day with a strong awareness of how blessed he is.  His quality of life would be very different today if it were not for the many people who worked  long and hard to develop effective asthma medications.

I  believe God also has a hand in the process.  He gives people wisdom, strength, and tenacity.

He [God] changes times and seasons; he [God] deposes kings and raises up others. He [God] gives wisdom to the wise and knowledge to the discerning.   Daniel 2:21 NIV

I am thankful to God for my medications and my doctors.  I am thankful for those that work tirelessly to bring forth new lupus drugs to help those in desperate need.   I know we are far from a perfect solution, but may the work continue, and may God help each scientist.

Hopefully, one day, each lupus patient will be able to “breathe easy” with their symptoms completely under control.  God bless the medical explorers.

Many blessings to you…Leslie Rose K





30 Posts of enCOURAGEment Post 9

Have you ever met someone who defied all logic for you?  Their situation dictating a far different life than what they actually have?  There is a marvel of a man, that is spreading a message of hope and encouragement around the globe.  He goes to  places others won’t go. He makes himself vulnerable and available.  You may have seen him briefly on Oprah’s Life Class recently.  Nick_Vujicic_speaking_in_a_church_in_Ehringshausen,_Germany_-_20110401-02

His name is Nick Vujicic.  Many posts ago I did a book review on this  man’s book.   Initially, I did not want to read his book thinking it would be too heartbreaking, but I was mistaken.  It is an inspirational book about someone who has overcome extreme lifewithoutlimitsbookjacketobstacles and thrives in life.  You can click here for my review of Life Without Limits.

I hope you will take a few moments to read his story here in his own words. No matter what you are going through today I believe Nick’s testimony can encourage you to have hope.

Stay tuned as I share more from Nick in coming posts.

Many blessings….Leslie Rose K

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30 Posts of enCOURAGEment Post 5


Born Leslie Townes______

Lived to be 100

English born moved to USA with family at age 5.

In 1996 the US Congress declared him the “first and only honorary veteran of the US Armed Forces.”

Had a career spanning 60 years, appearing in over 70 films and shorts.

According to Wikipedia was awarded over two thousand honors and awards, including 54 honorary doctorates.

Was awarded five honorary awards by the Academy of Motion Picture Arts and Science.

In her short story An Ambassador of Hope, Christine Dallman remarks “there was never a more aptly named entertainer than Bob Hope.”  He entertained troops in every war from World War II to the Gulf War.  While some did not care for him and his beliefs about war, many esteemed him for his tireless visits to military bases worldwide.

Hope had a deep respect for the men and women of the military. He worked hard to bring encouragement to them wherever they were Bob-Hope-Frances-Langford-USO-Show-Ponam-Is.-30-Aug.-1944-Official-Navy-Photo-located.  One soldier recalled that when Hope came to the small base at Pensacola, Florida he held nothing back.  “He showed up with a full-scale production.  There was a 100-foot stage, a full orchestra, a band, everything.  It was a complete traveling show, and it was big.”

history0016_1950sWhether in a small or large venue, Hope brought encouragement, and lots of it.  For a brief moment in time he made a difficult situation easier for US soldiers. They were able to forget about everything for a little while and enjoy the show.bob-hope-06

Until next time….Leslie Rose K

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I have seen what a laugh can do. It can transform almost unbearable tears into something bearable, even hopeful.  -Bob Hope

If you haven’t got any charity in your heart, you have the worst kind of heart trouble.   -Bob Hope

30 posts of enCOURAGEment Post 4

In 1989 I went mountain climbing with friends in the Sierra Nevada Mountains in California.  When I think of the trip, I think of the tallest trees I ever saw, ice-cold water to wash up in, and unappetizing food such as dried beef on extremely dry bread.  I think of fresh air, beauty and adventure.

It was a challenging hike for me.  I was used to bike riding and walking my dog in the city. I was not used to stomping  up ca6589a mountain side through  trees and gnats with a huge heavy pack on my back.   A few days and several thousand feet later we were back where we started.  By the end, I was completely done in.

Life can be like climbing that mountain.  There are good times, good friends and beautiful sights.  It can also feel like we are making no progress sometimes.  Occasionally, we may even feel like giving up, but we can’t.  We must climb on.  Sometimes we can go around in circles until we get back on the right path.  Other times we can feel so alone, it is scary.  We can’t stop climbing though.  We must go on.  Then, one day, we round a corner, and everything comes into view.  The sight is spectacular.  It’s a  good thing we did not turn back.8046603884_ba5be0708c_z

That hike in the Sierra’s was well worth all the hard work.  Life is like that too.  So don’t lose hope.  No matter what you are struggling with now, there is a good chance you will soon round  a corner and things will change for the better or come into better focus.  Let Mandisa encourage you with a song of hope.



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He is with you.  Leslie Rose K

30 Posts of enCOURAGEment Post 1

When we think of courageous people, most of us think of soldiers, firefighters,fire_rescue-716064 police officers, and other first responders. Some people think of Martin Luther King Jr., Rosa Parks, Gandhi, and Mother Theresa.  Others, think of  little boys that save someone from harm or strangers that rescue people they do not know.  Some even think of courageous animals that rush into harms way.

Blog photos uploadedAll of these are examples of courage. People putting themselves in harm’s way for the sake of others.  There are large and small courageous acts. There are public and not so public ones.  There are courageous acts you may have never even considered.

In the coming days we will look at many different acts of courage.  Hopefully they will cheer us, inspire us, and maybe even change us a little.

I honor you, Hero, for you do not play to the crowd.
You play to your own soul.
An audience of one fills the house with its appreciation and applause.
Others follow you, and may attempt to emulate you,
but that is not why you are a hero.
Fame may smile upon you, or it may not.
The world may cheer your name, or you may be the unknown warrior
who rescued comrades in battle,
or taught a young girl how to shed tears of joy.
Whatever you did, you did not do for fame.
If you had, you would not be a Hero.
You are a Hero for your bold courageous inspired action.
– Jonathan Lockwood Huie

With gratitude, for the courageous men and women that protect us, and our freedom.          Leslie Rose K

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Introducing 30 posts of enCOURAGEment

I have spent many posts sharing coping strategies that I hope have helped my readers.   I think it is time for  something a little different.  I am going to embark on a journey I pray will bless and encourage you and me.  I am calling it 30 Posts of enCOURAGEment.

Courage, by definition, is the ability to confront fear, pain, danger, uncertainty, or intimidation. (wikipedia)  If you are alive, you have needed courage to face many, if not all of these things, at one time or another.  If you deal  daily with autoimmune diseases such as lupus, Raynauds, and Sjogren’s Syndrome you need  courage and encouragement.

What will this journey look like?  I hope each post will pleasantly surprise you with stories of courage, words of encouragement or songs that inspire hope.  And, I hope you will pass them on to a friend or two and encourage them.

The cold weather is not my friend.   Aching joints and tender fingertips have me longing for spring. I hope to see some improvement then, because the daily grind of coping with ongoing pain can get discouraging.   I am ready for some encouragement.  I suspect you are also.

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Many blessings,  Leslie Rose K

Resolution Success and Lupus Part 2

You have had a couple of weeks to think about what you would resolve to work on in your life, if you could not fail.  You may feel overwhelmed by several things you would like to change. If that is the case, I would like to urge you to choose one major goal and start there.

Unrealistic goals, bad plans and lack of support are a few of the things that will lead you down the road to failure.  For those of us with autoimmune disease, perspective will play a major part in our success or failure.  People often give up on the goal prematurely because they  lose perspective.  That is “they no longer have an  accurate point of view.”  They lose their objectivity.  One way this can  happen is when a person becomes discouraged due to chronic illness.

In 2011 fatigue was almost crippling me a good part of my waking hours.  During a visit to the doctor in December,  he told me there was nothing he could give me to help the fatigue. He did give me valuable advice that changed my life.  He said  if I began to add consistent physical activity into my daily routine, such as riding a stationary bike for 30 minutes, I should see some relief.

If you are reading this blog, you most likely have lupus, Sjogren’s or another autoimmune disease.  In that case, you know exactly what a challenge this advice can be.  I got through the holidays.  Then January rolled around and I found myself still meditating on the situation.  A few weeks into the new year I finally managed to get myself to the store to shop for a stationary bike. We came home with a great bike that my handy husband immediately put together for me.

Next, I needed a plan.  I decided to try a monthly calendar that I could mark  everyday that I rode.  I would record how far I rode and for how many minutes.  This simple record keeping kept me on task and showed me my progress week after week.

I am a list person so this works for me.  If you are not, I urge you to try this idea anyway.  It is very rewarding to see your progress. If the goal falls by the way side,  your charting will show you that if you did it once before, you can do it again.  You have the proof.

Here are some other good tips  to make your  resolution a reality:

  • set realistic goals, thus setting yourself up for success not failure
  • set a deadline, if applicable    i.e. I will lose 10 pounds by September
  • make a plan and break it down into parts if necessary
  • be flexible, willing to make adjustments to the plan until you find something that works
  • find someone who can support you and be your cheerleader
  • look to God and His Word for help as needed
  • be kind to yourself, give yourself grace when needed.  Keep things in perspective. Take your special needs into consideration. 

Do not be so overly kind to yourself that you stagnate.   It boils down to how much you want to see your goal achieved.  Life is like being in the ocean water.  It is impossible to stay in one place.  You are either working to get to your destination or the current is pulling you where you do not want to go.  But, I have good news for you.  If you keep things in perspective and the goal before you, you have a good chance of  achieving success, whether you have lupus or not.

Until next time when we look at the realities of the resolution journey.  Blessings, Leslie Rose

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