Posts Tagged ‘Sjogrens’

A key to living a more enjoyable life.

Here we are again, another winter storm on the way.   With the frigid weather I have stayed in most days working on my quilt projects. IMG_4114 When I was sick with a chest cold a few weeks back my husband doted over me for a week, for fear I would end up in the worst possible place-the hospital.  I spent my time reading books and magazines and kept busy the best I could-in spite of not feeling well.  An article in one of the magazines got me thinking about a life changing event I would like to share with you.  Please bear with me if some of this is redundant for some of you.

Each issue of Quilter’s Newsletter magazine, has an article where 4 people respond at length to a certain question.  The question for Feb/March 2014 was, If I could spend a day with a quilter.  I expected people to write about well-known quilters and was  surprised to see that each person wrote about someone who had passed away, someone who impacted their life with quilting.  My thoughts immediately flew to the person who first introduced me to quilting over 30 years ago.  Tears came to my eyes as I thought of my friend, Linda.


My first quilt. Early 80’s.

I met Linda in my early twenties.  She was just a few years older than me, an  elementary school teacher, who loved “tag-sailing”, and collecting antique things.  Her house was like a museum.  The most memorable thing about Linda was her laugh.  She was one of the happiest people I ever met.  Her eyes even laughed.

Not long after I met her, Linda gave me a personalized quilt block for my anniversary.  I was very intrigued, having never seen anything like it before.  As a result, she offered to show me how to make a simple 9 patch quilt block, like the one in the sampler. (top row, middle block) After her  lesson, I went on to take a quilting class.  Mind you, this was before all the time-saving tools we have today. The class was challenging, but I stayed with it.  In the end, I had this sampler that I still treasure.

Strangely enough, after having made a few quilted items, I gave up quilting for several years to make and sell a variety of hand-made items.  I eventually returned to quilting after remarrying and having my daughter.  I took more classes, and made new friends.  Even though I was busy raising our daughter, and doing child care, I made time to quilt in our cramped little bedroom.

Sewing the binding on my daughters quilt in my tiny sewing area

Sewing the binding on my daughters quilt in my tiny sewing area

After we moved to PA., Linda and I kept in contact mostly at Christmas. This went on for over a decade until one Christmas I received a phone call from her companion telling me Linda had passed away from pancreatic cancer.  I was shocked, and very sad for her 3 children, and for all those who loved this vivacious, happy woman.

Linda’s illness came on her suddenly, her suffering was great, but short.  For many of us, living the rest of our lives with the effects and unpredictability of lupus can be discouraging, even overwhelming.  My purpose for blogging is to encourage us, to plow ahead, into perhaps uncharted territory, and rise above this disease that would seek to rob vitality from our life.  Quilting has helped me in this area.

For me quilting:

  • has helped foster friendships I wouldn’t have otherwise

    Stitch n' Peace Quilt Group Gettysburg Pa.

    Stitch n’ Peace Quilt Group Gettysburg Pa.

  • improves my brain and self-esteem
  • helps me develop persistence, patience, and purpose
  • helps me dominate illness in my life
  • gives me much pleasure, relieves stress, and boredom
  • fills my home with many treasures I get to enjoy

Quilting has allowed me to:

  • show people how much they are loved as they receive a one of a kind gift

    One of the baby quilts for Japan

    One of the baby quilts for Japan

  • send  messages of love and hope to Japan after the tsunami
  • bless babies in Romania at Casa Shalom, and here in Pa. at Tender Care Pregnancy Centers
  • earn money for our family by making doll quilt sets for many little girls

I would love to have the chance to:

  • show Linda my little photo album documenting my journey of quilting.
  • To show her how my abilities have slowly improved over time.
  • To thank her for the wonderful friends I have made.  To tell her how they have helped me grow as a person and  in my ability as a quilter.
  • tell her how crucial quilting has been in helping me rise above the effects of lupus
  • I would like to be able to properly thank her.

We never know how we will impact someones life, and then in a domino affect,  other lives. Working with my hands has been a true lifesaver for me.  Do you have a passion? Or, maybe you are ready to try something new?  Whatever the case, use it to enable yourself to rise above the effects of lupus and make life more enjoyable.dominos

In all fairness, I cannot end this post without recognizing the other people who  were a huge influence in this area.  In high school,  I had a strong inclination toward art, which my father and step-mother were very quick to foster, in the brief time I lived with them.  They really believed in me, which I think gave me confidence to  create in my 20’s.   To this day my step-mother is quick to encourage and support my endeavors, offering wisdom along the way.  And I can’t forget my mother, who has become my biggest quilt cheerleader over the last 10 years. Thank you Dad, Ginny and mom.

In the meantime, borrowing a phrase from Wendy Sheppard, an amazing quilter I follow on-line at Ivory Spring, curious minds want to know, what do you do to dominate your diagnosis?

Until next time,
Many Blessings, Can’t wait to hear from you….Leslie Rose K
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Let the favor  of the Lord our God be upon us,
    and establish the work of our hands upon us;
    yes, establish the work of our hands! Psalm 90:17 ESV

30 Posts of enCOURAGEment Post 25

A few weeks ago, in post 19, I wrote about my duck tape encrusted light switch cover, and change.  I do not know if you are in the process of working on a life change, but I do know that the ordinary challenges of each day with autoimmune disease can make it seem impossible to add anything else to the  When you have to live everyday with  lupus, CFS, sjogren’s, etc, life changes will often need good doses of, not only courage, but encouragement.   A faithful encourager, walking beside you, is invaluable.

Several years ago I got up the nerve to invite a couple that we did not know over for  dinner .  They sat across from us in church, and I felt drawn to them for several weeks.  During church I asked them if they wanted to come over that day for Easter dinner.  It was a crazy thing to do.  I was sure they would think I was a nut, like my daughter did, easter_mealbut after church they said yes. That was the beginning of our friendship.

As time went on, I taught my new friend some quilting.  Later, I stepped out of my comfort zone, and asked her to be a prayer support for me during a challenging time of writing this blog.  A couple of years ago, we made a decision to try to get together as couples once a month.  In the meantime my friend made a life choice to lose weight.  She had great success.

While I was happy for her and my other close friends in church that had recently lost weight, I did not think I could do it.  I had tried several times with little success.  After months of consideration, I saw Chris Powell on Dr Oz.  His plan clicked with me, and I decided to give it a try.9781401324452

Let me tell you, I do not know what I did to deserve it, but my friend became my biggest encourager.  Every week she sees me, she is quick to ask how I have done, and tell me how good I look.  On weeks when I have struggled, she has boosted my morale.   She is quick to share her tips and her struggles.

We went to their house the other week anticipating another great time of fellowship.  Shortly after arriving, she looked at me with such sincerity and told me how great I looked.  She amazed me with her consistent encouragement.  Little did she know, I was not feeling particularly good about myself that night.

I know you live in the same world I do, and you probably know how rare this soul is, and how blessed I am that I have been given such a gift to help me with this challenge.

As for my friend, perhaps she is standing with me because the battle is still fresh in her mind as she struggles to lose the last few pounds herself, Girls friendshipbut I do not think so.  I think she has made a choice to make a difference in my life, knowing the day-to-day struggles, not just of losing weight, but of living with chronic illness.

As for me, I am truly thankful for this encourager God has planted in my life.

Are you an encourager?  Perhaps it is time to step out of your comfort zone, and ask for encouragement for yourself as you deal with the daily challenges of illness, or with a  life change you are making.  Or maybe you know someone who could use an encourager,  and could be as invaluable to them as my friend is to me.

Two are better than one, because they have a good return for their work:  If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Ecclesiastes 4:9-10

I welcome your comments.  Until next time….Leslie Rose K

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Romans 12:12  Rejoice in hope, be patient in tribulation, be constant in prayer.

30 Posts of enCOURAGEment Post 23

Another week has come and gone.  In a few more days my 20-year-old daughter will return from 11 months overseas.  For me it has been a year filled with many emotions as my only child went from a 5 week internship in India, to her junior year of college in China, to touring several countries alone during her long winter break.  (Before last July she had never even been on an airplane.)

Now that it is almost over, I can say it went by fast.  While I was going through it, there were days that the time dragged by.  Thanksgiving was probably the worst.  By Christmas I had adjusted a bit better but still missed her immensely.  As time went  on, I learned to live with the void that this brought into my life, in spite of Skype.IMG_2118

Living with chronic illness is a lot like my experience with my daughter.  It was really rough in the beginning.  I couldn’t get a handle on the whole thing.  Everything had changed overnight and  I couldn’t get my mind around it.  It seemed to take forever for my body to stabilize and for me to get on the upswing.  Then the tough part came.  I had to learn to live with the void that lupus, and then sjogrens, brought to my life.

One of the definitions for void is the quality or state of being without something.  Related words are

defectiveness, detriment, disability, failing, fault, impairment, weakness; deficiency, deficit, imperfection, inadequacy, inadequateness, incompleteness, insufficience, insufficiency, lack, need, shortcoming, shortfall, want  (Merriam Webster On Line)

This pretty much describes it.  Autoimmune disease has changed my life just like it has changed yours.  What happens after that is up to us. We can either let the void mold us into a stronger person, or we can let it consume us, and ruin any chance of a fulfilling life.  This is why I selected the name Dominate Your Diagnosis for my blog.  I knew I needed to continuously work at not being overcome and was hoping others would join me on the journey.

It is not easy. It is work to keep our head up and keep moving forward.  When my daughter was on winter break traveling through Laos, Thailand and Cambodia I had to focus on not being consumed with anxiety.  There were many days I 576046_4480711936910_449760608_nreminded God that she belonged to Him and I put my trust in Him to watch over her.  I could not do it alone just like I have not been able to take this journey with chronic illness alone.

That is the encouraging news today.  We do not have to walk alone.  There are others that understand  what we are going through. There are those that support us.  There is God that invites us to lean on Him if we desire to.

Next time I want to introduce you to Bill. He has an amazing story.  Please come back and see how he responded to the change that autoimmune disease brought into his life.

Even though my daughter is returning, and the void will temporarily be filled, things are forever changed.  There is no going back.  She has experiences under her belt that I cannot even imagine and many more adventures ahead of her.  But for now, I can’t wait to get my mother’s arms around her and see her infectious smile.200758_4480689656353_2863845_n

Encouraging news if you missed the update last week….Adam has received news that his appeal was won for 2013.  It was a quick turn around.  I think his aggressive, no-nonsense approach was quite effective and a lesson for others.

Thanks for your support.  I welcome your comments.  Until next time….Leslie Rose K

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Romans 12:12  Rejoice in hope, be patient in tribulation, be constant in prayer.

30 Posts of enCOURAGEment Post 12

How many times have you become discouraged because you could not function the way you used to due to lupus, another illness, or a disability?  Over the last 10+ years  I  have had many moments of regret, sadness and discouragement.  When we cannot do what we used to, our self-esteem can diminish, if we let it.  Here is an encouraging story that speaks to this very thing.

The Little Cracked Pot

There was once a water bearer who had two large pots, one hung on each end of a pole which, he carried across his neck. One of the pots had a crack in it, but the other pot was perfect, and always delivered a full portion of water at the end of the long walk from the stream to the master’s house, while the cracked pot arrived only half full.cracked-pot

For a full two years this went on daily, with the bearer delivering only one and a half pots full of water to his master’s house. Of course, the perfect pot was proud of its accomplishments, perfect to the end for which it was made.

But the poor cracked pot was very ashamed of its imperfection, and was miserable that it could only do half of what it had been made to do — or so it thought.The cracked pot, after two years of what it perceived to be a bitter failure, spoke to the water bearer one day by the stream.

“I am very ashamed of myself, and I want to apologize to you.”

“Why?” asked the water bearer. “What are you ashamed of?”

“For the past two years, I have only been able to deliver half of my real capacity, because this crack in my side allows water to leak out all the way back to the master’s house. Because of my flaws, you have to do all of this work, and you don’t get full value from your efforts,” the cracked pot said.

The water bearer felt sorry for the old cracked pot, and compassionately said, “As we return to the master’s house, I want you to notice the beautiful flowers along the path.”cccccc

As they went up the hill, the old cracked pot did notice the sun shining on the beautiful wild flowers growing along his side of the path, and this cheered it some. However, at the end of the trail, it still felt bad because it had again leaked out half its load, and so it apologized to the water bearer for its failure.

The bearer said to the pot, “Did you notice that there were flowers only on your side of the path, but not on the other pot’s side? That’s because I have always known about your flaw, and put it to good use. I planted flower seeds on your side of the path (for the return trip), and every day while we walk back from the stream, you’ve watered them. For over two years I have been able to pick these beautiful flowers to decorate my master’s table. If you weren’t the way you are, he wouldn’t have the flowers for his house.”wildflower_seeds

Many Blessings, Leslie Rose K

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30 Posts of enCOURAGEment Post 10

As promised I am returning with more from Nick Vujicic, an amazing encourager.  In the attached video he shares his heart with a large group of school students.  I think you will find this moving and encouraging.  Perhaps you even know someone who could use this very message.


Nick as a small boy


At the beach

CLICK HERE for one of the  most inspirational videos you will ever see — Nick Vujicic  




Nick and his son

wedding nick

Wedding Day

Many Blessings, Leslie Rose K

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30 Posts of enCOURAGEment Post 8

Did you ever have to stand up and speak in front of a large group of people?   I have, several times, and it is not easy.  Want-Me-To-Give-A-Speech-No-Sweat1Frankly, I do not like it.  I do not even like the thought of it.  So when I see these braves souls on TV singing in front of millions of viewers for the first time, I marvel at their courage.   No matter how good they are, it still takes courage.

A few years ago my daughter and I watched a couple of seasons of American Idol.  It did not win me back for a third season.  I was so tired of the drama, negative comments and feedback.  Not all the input was negative but it was enough not to draw me back.  Then, by accident, my husband and I discovered The Voice. We watched two seasons and are in the beginning of our third.  It made fans out of us.

What is the difference between the two?  For me the spirit of the show is completely different.  The contestants give a blind audition.  This means the judges have their backs to the singer.  They have no idea what the person looks like. Whether the singer makes the cut to progress to the contest  is based solely on their talent.

The judges don’t chew the singers up if they do not meet their standard.  Parents do not have to be afraid to let their teens audition. No one is going to be humiliated on stage if they do not make the cut.  They will most certainly be disappointed, but they will not be humiliated.  It is nice to TheVoice__Logo_Handwatch the singers develop throughout the season under the direction of the coach that selected them for their team.  At the end of the season the sets and songs are impressive and entertaining.

Reality TV has made public humiliation entertainment.  My husband and I don’t enjoy watching it.  I heard shaming is even a main tactic in the classroom to try to get kids to cooperate.  Where are we heading with all this?  A good question to ask ourselves is, are we encouraging those around us? Are we encouraging the next generation? Are we encouraging those that are showing courage and stepping out of their comfort zone to try something new or amazing?

Kudos to the Voice for being an example of encouragement in a climate of public humiliation.

Many blessings….Leslie Rose K

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30 Posts of enCOURAGEment Post 7

It was 38 years ago, and I had just turned 16.  I found myself living on the third floor of a boarding house in a tiny room. 132764904 All I had was a bed and a dresser.  I was alone, vulnerable and discouraged.  I do not remember if I cried out to God before or after I had been sexually assaulted.

Nothing happened immediately that I could see.  I kept living my life, making a lot of poor choices.  God, in the meantime, was working behind the scenes. Two years after I cried out in that wretched little room, I met THE Encourager.  My life has not been the same since.  It has not been an easy life.  I have walked through many difficult experiences, but I have not had to walk alone.

Contrary to what some people  say, Jesus is very much alive, and wanting to be part of our lives.  He is a good god, faithful and empty_tombloving.  He cares for us deeply.  As you go through this Easter season, consider seeking The Life-changing, Living God and let Him bless you if you haven’t already.

Perhaps you feel discouraged and alone like I did those many years ago. Click Here for Safe, a beautiful song by Phil Wickham.  FE_1212416890Maybe you know someone who needs the message in this song.  Be an encourager today and pass it on.  Whatever the case I wish you all God’s best.

Click here for a vivid word picture of what Jesus suffered for us.

Many Blessings….Leslie Rose K

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