Posts Tagged ‘life with lupus’

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
For more inspiration  follow me here on PINTEREST.
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

Entering 2014 with a challenge?

Happy New Year!  As we enter 2014 I am certain we all face some sort of challenge.  In our little family, guidance and wisdom areguidance key needs starting 2014.

  • Guidance as my husband considers career adjustments and looks for new employment.
  • Wisdom for me in several different areas.
  • Direction for our daughter as she graduates college in May and has many changes to look forward to.

For some readers,

  • courage and hope are your key needs starting out 2014. You are facing challenges bigger than yourself.
  • Perhaps health and strength are your key  needs at the start of this year as you cope with the physical needs of lupus and lonelinessother autoimmune diseases.
  • Maybe friendship and family are areas of need.  There may be a void in your life or healing that needs to take place.  I could  go on  but I think you get the picture.

What is a person to do?  After the celebrations end and life falls back into the daily routine, where will we find help for the key concerns in our life?  For me, the starting place is always God.  I simply cannot handle the big issues of life alone. The people close to me do not have the ability to soothe all the inner stirrings of anxiety, doubt or what have you, in my soul.  My prayers usually start by explaining the situation to God, even though He already knows.  They are usually short and to the point, but consistent, until the situation is resolved.

Even though the answer  is not always what I want or expect, prayer helps calm me going through the situation.  I do not feel so alone inside with all my feelings, fears, and apprehensions.  People are great, but for me, nothing soothes my soul like leaning on Someone bigger than myself.god-of-all-comfort

Whether or not you deal with the challenges in life the way I do, I sincerely pray that you have

  • all the resources you need to meet your challenges in 2014, and that you will have a good resolution.
  • I pray you will have wisdom and guidance when you need it.
  • I pray you will be courageous and filled with hope as you meet every challenge.
  • I pray you will find increased health and strength to live life more fully than last year.
  • I pray your relationships will thrive this year and your family will have peace.
Thank you for following this blog and for your encouragement which usually came at just the right time. 
Leslie Rose K
From Wisdom From God’s Word  1/1/2014
Even youths shall faint and be weary,
    and young men shall fall exhausted;
 but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
they shall run and not be weary;
    they shall walk and not faint.   Isaiah 40:30-31 ESV


30 Posts of enCOURAGEment Post 26

For the past 25 posts, you have read all different takes on courage and encouragement.  Do you see yourself as courageous?

When we think of courage today, we probably think of the Wikipedia definition:

Courage is the ability to confront fear, pain, danger, uncertainty, or intimidation.

In some traditions, fortitude holds approximately the same meaning as courage.

Aquinas says,

. . . the term “fortitude” can be taken in two ways. First, as simply denoting a certain firmness of mind… Secondly, fortitude may be taken to denote firmness only in bearing and withstanding those things wherein it is most difficult to be firm, namely in certain grave dangers.Wikipedia

enduranceThomas Aquinas holds courage or fortitude as being primarily about endurance.   If you live with lupus or any other autoimmune disease, you most likely are building your “courage” up daily.
Life has adversity.  No one escapes.  Living with autoimmune disease presents even more challenges.  The good news here,  we have a greater opportunity to build up our courage, which will hopefully develop into a greater ability to understand and help others.  Clergyman and abolitionist Henry Ward Beecher said “troubles are often the tools by which God fashions us for better things.”                                                                                                                                
Roget’s Thesaurus describes fortitude as follows,

The quality of mind enabling one to face danger or hardship resolutely: braveness, bravery, courage, courageousness, dauntlessness, doughtiness, fearlessness, gallantry, gameness, heart, intrepidity, intrepidness, mettle, nerve, pluck, pluckiness, spirit, stoutheartedness, undauntedness, valiance, valiancy, valiantness, valor. Informal spunk, spunkiness. Slang gut (used in plural), gutsiness, moxie.

Do you have more pluck than you did before? More guts to speak up for yourself and others in weakened states?  Do you feel braver having facing traumatic health issues and procedures?  Do you have more courage?  Nick Vujicic from post 9 and post 10  could have committed suicide, but he made a decision to choose a road of fearlessness instead.

Back to Thomas Aquinas.  He thought courage or fortitude was about endurance.  Endurance suggests someone pacing themselves aslong-distance-runner they run a long, sometimes tedious race.   Nick would probably tell you it takes a daily choice, and not just stamina, to succeed.

I am guessing your endurance has grown as you have dealt with the challenges you face.  You are not the same person you were before.  You have more depth, more insight, knowledge and wisdom.

Are you thinking you would have been better off to be healthy and not develop or strengthen these  traits?   Every experience makes us the person we are becoming.  It is the illustration of  the front and back of a tapestry being estherholsenfrontbacklived out in our lives.  We cannot see the beauty now because we see a mess of threads as we see the back side, but one day we will see the front of the tapestry of our lives.  Hopefully, what author William Barclay said will be true for us.  Endurance is not just the ability to bear a hard thing, but to turn it into glory.

I pray God will  help you as you grow in courage and endurance.  I am signing off until September.  I hope the next few weeks of summer are blessed for you.

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 21

Those of us dealing with lupus and/or other autoimmune diseases have a lot of experience dealing with adversity.  Adversity affects people differently.  If you follow social media you see this repeatedly.  Even those who are usually strong in the face of adversity can sometimes  give in to the pressure of it.  Fortunately, for these people the fall is usually short-lived.

Baron Batch, football player for the Pittsburgh Steelers, notes that our frame of mind is the deciding factor with how we deal with adversity.  I think it is the same living with chronic illness.  Adam from post 20 is a prime example of this.   Adam made up his mind he was going to do the Tough Mudder.  He set his mind to doing the training and following through with the race even when it became very difficult.
764064640 click photo for link
In his article for lubbock on line, Batch writes,
Overcoming is a skill, and should be practiced as such.  As I journey though life I pass fellow travelers who get stuck at certain trials, and can’t seem to overcome them because they lack strength and become stranded. They wander searching for an alternate route, but sometimes there isn’t a way around. There’s no shortcut. Sometimes you have to go through. Some people embrace this, and some simply shut down at the thought.

Baron has strong feelings about overcoming adversity and how the past affects the future.

It’s what we do with our past experiences and trials that dictate how we deal with our future ones. It’s not enough to get through them.  The important thing is storing them for when the next trial or injury arrives and remember the process — because the process is what’s important.

Don’t call it a comeback. Call it part of your journey, a chapter to your story.  Comebacks don’t exist, only the process.

No one is exempt from adversity and it will never stop coming into our lives in one form or another.  Adversity builds character, makes us stronger, and able to relate to the many around us that are struggling in one way or another.  Batch relates our trials to things we put in our backpack and carry around to make us stronger for the next bout of adversity, much like an athlete in training.

Besides writing and having a popular blog, Baron is also  an up and coming artist.  He was able to hone his skill, a childhood fascination, during his most recent injury.

Papa Time by Baron Batch

Papa Time by Baron Batch

Elizabeth Regner, executive director of the Lubbock Arts Alliance says “…his artwork is a fabulous example of contemporary folk art”.  Read more and see a short video here. 

Like Adam, I think Baron Batch is a great example of someone who would not let adversity derail and discourage him, like turning lemons into lemonade.  (I love lemonade.)  So how about you?  Are you making lemonade today?  I hope so.

30 Posts of enCOURAGEment Post 20

An amazing story of one mans drive to dominate his diagnosis of lupus and live a full life.

As promised, this time I have a guest blogger for you.  I first read of Adam’s story on a lupus Facebook page.  Because my husband was interested in the endurance race that is all the rage right now, I knew how powerful Adam’s story was.  But for you to fully appreciate his story you must CLICK HERE for a brief action packed overview of the Tough Mudder.

Adam writes……

I was diagnosed with lupus in 1995 when I was 15.  I was having trouble simply walking up stairs.  My mom took me to the doctor and he listened to my chest and heard crackling.  Immediately he sent us over to the hospital for a chest x-ray.  Back then the x-ray took over night to dry, so I went home, Hospitalbarely able to breath as I tried to sleep.  In the morning we got a call from the hospital telling us that I needed to come in immediately.

They had no clue what was wrong with me.  There was a parade of doctors in and out of the room.  They took me into surgery, and when I woke up I had tubes coming out of my chest. My kidneys were the size of softballs, basically I was really sick.  It took two weeks of being in the hospital until they completely drained my chest.  I had three liters of fluid around my chest and one around my heart, when it was all said and done.  At the end of the two weeks is when they finally diagnosed me with Lupus (SLE).

For the next 10 years of my life I would be on Prednisone, different amounts at different times 5-20mg at any given time.  When I started with my adult rheumetologist we tried Plaquinil and a few other drugs.  That is when he decided to give Rituxan a try.

About six months ago my friends asked me to join their team for a race called “The Tough Mudder.”  tough-mudder2-v2I was hesitant to do so since I was not sure how my body would react due to Lupus.  I never ran in a race before, but figured you only live once.

I have been mostly healthy since my doctor put me on a Rituxan treatment back in 2006.  I had a horrible flare in 2007, due to United Healthcare refusing to pay for the treatment the second time around, which took me six months to completely recover from.  I had to wean down from 80 mgs of prednisone and lose 40+ lbs of water weight.  My thought process was that if I could live through a flare, I could definitely get through a 12 mile course with obstacles (this couldn’t be any tougher than trying to recover from a flare, right?).Pill-Bottles-683042

I started training for the Mudder in January. I got the flu in the beginning of February, a week after my flu shot, so I lost a few weeks of training.  Once I was able to get back to the gym, my wind eventually came back to me.  I was able to get to a point where I could run three and a half miles at a time, in approximately 30-35 minutes.  In addition to that, I did some strength training on my arms.

May 18, 2013.  Race day arrives, training is done, all I can do is my best.



I am not going to lie, some of the obstacles were pretty killer.  My body was tired, my legs were cramping, I lost a contact along the way, but my teammates kept encouraging me to go on.   I willed my mind, to make my body, do things I did not know I was capable of doing.  I survived freezing water, electrical shocks, miles of mud, tall obstacles, and dark tunnels.  I completed the Tough Mudder earning the much sought after orange headband.


Adam and family

My advice to anyone with Lupus who is feeling down, or has been sick, is the mind is a powerful thing.  If you keep a positive attitude you can overcome any obstacle in front of you.  For those interested in doing the Tough Mudder, I suggest working on your endurance and strength training.  Start with a small goal of maybe running a mile, eventually you will build up the strength to go further.

Best wishes to you all.   Adam


The Team

Many thanks to Adam for sharing his story with us.  Anyone living with lupus knows just what a feat this was for him.  Just to get up the courage to participate in the light of the unpredictability of the disease, is major.   Kudos to his friends who included him and supported him in this brave endeavor.  To learn more about lupus, click here.

Please feel free to pass along this encouraging story to others.

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 18

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Many Blessings, Leslie Rose K

30 Posts of enCOURAGEment Post 13

Remember the last post about The Little Cracked Pot?  Are you letting what you cannot do define you?  I hope the following post will encourage you.

C137 Finals IQA 2013.indd

Award-Winning Quilts 2013 Calendar
Click Image for detail

A good quilt show is a magical place.   As a quilter myself, I marvel at the wonders I often see at these shows.   There are mesmerizing miniature  quilts where a 12″ x 12″ area could contain hundreds of tiny pieces sewn together.  There are spectacular large quilts of every kind, whole-cloth, applique, and pieced, along with every size and style in  between.

There  are quilters who finish their quilts  with a substantial amount of machine quilting stitches and  the minimalist who tends to quilt  sparingly, but perfectly by hand.  There are three-dimensional quilts and quilts done in  separate sections.  Some people even use different  fibers such as wool  and  silk.

You could find a quilt with bright and bold color combination’s along side a quilt with soft pastels.  There could be a quilt with large wildlife prints next to one with  calico fabric.  Each quilt is as different as its creator.  Each quilt has a story behind it. One quilter may have had a desire to  get out of a rut of stagnation and another to send a message about a current hot-button issue.

I have to admit that when I go to these fantastic quilt shows, I marvel at the time, energy, creativity and ability these  artists have.  In my opinion, I do not have  enough of any of these things, but wish I did.  It is easy to feel like an insignificant quilter in the shadow of so many stunning quilts.  I could spend a lifetime trying to make a showstopper quilt, but I would get nothing else done. No quilts to keep my loved ones warm and cozy.  No  quilts to bring life to a plain wall or room.  No table runners to invite people to a home cooked meal. No quilts for friends and family to enjoy.

Sewing the binding on my daughters quilt

Sewing the binding on my daughters quilt
Click image for detail

I made a patchwork quilt  for my daughter’s bed when she was three.   This photo always makes me smile of her sitting on the quilt, while I am at the sewing machine attempting to sew on its binding.  Now that quilt is quite worn from 17 years of use, the colors have faded and it is looking a little threadbare in places.  For people who struggle with the challenges of  an autoimmune diseases like lupus, it is easy to feel like a worn out patchwork quilt most days.  It is natural  to occasionally get in a funk and feel like you have little value in this fast-paced, high achievement world.

While the award-winning quilt is wonderful, you would not wrap your sick child in it, because it is often for visual enjoyment only.  On the other hand,  patchwork quilts are some of the most used and best-loved quilts around.   When my daughter was a teenager, she told me  that she  keeps the end with the  label up toward the top so she can read the handwritten message  each night before going to sleep. To this day, my daughter treasures that patchwork quilt. She tells me it would be one of the things she would take  if there was a fire.

So while you and I may feel like  simple patchwork quilts most days, I bet  our families would say we are priceless treasures that they would not part with for anything.  They would most likely rank us right up there with the showstopper quilts.

When it is all said and done, the quilt show does inspire me, even though  I  have to remind myself not to compare myself with these gifted quilters.  Each one of our lives is as unique as we are and we all have special talents and gifts to share.  The trick is  finding those gifts and sharing them as we are able. You could say, like The Little Cracked Pot.


The quilt now. Click Image for detail.

Whether you are a quilter or not, if you have never been to a national quilt show like The Pennsylvania National Quilt Extravaganza,  you should consider going to one, it will be an experience you will not soon forget.  Reposted from 04/05/2011

Blessings, Leslie Rose K

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where treasures of past and present connect

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Reclaim your life after a diagnosis of lupus/autoimmune disease

Unshakable Hope

“May the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit.” (Romans 15:13)

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