Archive for the ‘Bio’ Category

Being faithful…to yourself. Intro.

I was praying for a friend, who had lost his way, when the phrase “Lord, help him to be faithful to himself” came to me.  It was such a powerful message, I even texted it to him.  He never responded.  I did not think he would.  I just needed to get it out there.kaboompics_Man looking out to sea

Then I started thinking about myself.  Have I been faithful to myself?  Life is a journey with many twists and turns.  It is easy to get on the wrong path.  You never know what is going to set you in a different direction.   Being diagnosed in 2002 with systemic lupus was a major life changer for me.  Autoimmune disease probably was for you too, if you are reading this.

It takes a while to get your bearings after diagnosis.  You soon realize life will never be as it was.  Many of us push through forcefully, determined not to let it overcome us.  Even when things eventually do calm down physically, the unexpected can  be just around the corner.

That happened to me the end of 2015 when I took a hard fall and fractured my knee.   The end of March it was discovered something else was going on.  Something had happened to my lung in the fall, apparently sending it into an autoimmune response and pleural effusion that would not respond to anything.   For 6 months I had multiple tests, doctor appointments and 2 painful thoracentesis procedures,  culminating in a pleurodesis lung surgery the beginning of Sept. 2015.

To give you an idea of the level of discomfort for daily living, almost a quart and a half of fluid was removed from the pleural space each procedure.kaboompics_Wooden car toys on the floor.jpg

(When you get these tests, they find other things….for me they were a kidney mass and nodes under the arms.  So on to a biopsy, scans etc.  All adding to the stress of an already stressful situation.)

That was a scary detour, not just for me, but for my husband, who is a respiratory therapist.  He knew the seriousness of what was going on, and what could go wrong.

Now I live with some ongoing discomfort, especially at night, and some difficulty breathing during allergy seasons.  Until now.  This allergy season has gotten my lungs very flared up.  I  have difficulty breathing  with any exertion.  It’s time to get the specialists involved.

When I started writing this post weeks ago I was going to write about being faithful to myself while being the main caregiver for my mother. She was diagnosed with Alzheimer’s and dementia 6+ years ago.   Talk about a balancing act.

I am sure you have heard the saying  “the only thing predictable about life is its unpredictability.”  I can attest to that.  I am sure you can too.  Though we would like to go into hiding, unfortunately we can’t, at least not for long. kaboompics_Real life Courage, the cowardly dog

The big question is, how do we stay faithful to ourselves, in the midst of multiple things and people vying for our attention?  I would like to explore this over the coming months but I cannot blog like I did in the past.   In the past each post probably took roughly 12 hours to write.  So if you can bear with me, and a little less perfection in the writing, I would like to see if I can get this up and running again.

Please consider joining me on the journey.   As always your comments are welcome.

Many blessings to you.  Leslie Rose K




Blog Writer Bio Part 3

Welcome back to part three of the Blog Writer’s Bio.  I hope you found the book review interesting.  I have already started my next book to review, Life Without Limits. It is about a man named Nick who was born without limbs and how he became a  motivational speaker.

Back to the Bio…. I find it  important for me to stay engaged in life the best I can.  I took a grueling two-year correspondence course for writing.  I have been on the prayer team at church for over eleven years.  I  volunteer within my capabilities.  I make it a point to pursue my quilting, wool applique and card making. I have recently been contracted for a very part-time job as a facilitator for Family Group Decision Making.

I have been married to Ron for over twenty years.  We have one daughter, Elizabeth,  that I home-schooled for 5 years. She graduated a year early from high school and now attends community college.  Next year she will go on to a university and study  international relations.  I can’t forget my lap-cat named Jacob.  He came into my life the week I went into the hospital and has been a great companion through some very difficult times.

Several years into this journey with lupus I  began to see a need for a support system outside my family, friends and church. I knew there had to be other people feeling isolated by this disease that needed support also. In May 2007 I began to facilitate a support group in the Hanover area for Lupus PA .

I improved steadily and two years ago the doctor started saying the lupus was not active. I found out that not active lupus does not mean pain-free. Fatigue is my biggest ongoing issue at this time.  Joint and nerve pain from damaged tissue is a problem.  In addition to Reynaud’s I have constant, annoying ringing in my ears.

Recently I have been dealing with a variety of very uncomfortable symptoms in my mouth and eyes and was diagnosed with Sjogren’s Syndrome.  When I received this new diagnosis and read about it I became  discouraged. So while I try to encourage others, I myself needed encouraging. I needed someone to remind me of some strategies.

God did not let me down. After being away for a few days I came home to a card from my mother-in-law filled with encouragement to press on, be strong in the Lord and to not stop doing what I am doing. It was a real pep talk on paper.

Life with autoimmune disease is certainly a journey.  Like Nick in the book Life Without Limits, we can’t let it derail us, at least not for long.  And, if we can help each other along the way, we will all be better for it.

I pray that I am a help and a blessing to you on your journey. Until next time…..

Blessings, Leslie Rose K

If you would like to contact me apart from leaving a comment please email me at the following address

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Blog Writer Bio Part 2

When I closed the blog last week I was heading to the ER.  Needless to say, I had no idea what was in store for me at the hospital and  the weeks to follow.  They certainly were unforgettable.

I had a CT scan of my liver at 3 am in a cold uninviting room with a guy that kept poking me in the arm because he could not get a vein. The next day a surgeon came in to tell me a shadow on my kidney showed up in the scan. He would be able to remove my one kidney and I would live just fine with the remaining kidney!

On October 14th they did another CT scan  but of my kidneys this time. The shadow was a scar from an old injury and I was able to keep my kidney. In the meantime, I was put on strong antibiotics, had many vials of blood taken, and was seen by several doctors. I was even assigned a kidney doctor. Through all of this my doctor was on vacation and his sister was taking care of me. She was just as relentless in finding a solution to my problem as her brother.

The fourth day in, with some test results in hand, a rheumatologist was consulted. He instructed the doctor to get me off all antibiotics because it was almost certainly the autoimmune disease SLE, more commonly referred to as lupus. Thank God. By the time I left the hospital the next day I could hardly stand up from all the antibiotics and being in bed for 5 days.

The adventure was not over. The kidney doctor wanted a kidney biopsy on the 21st. Just like with the first biopsy, I got very sick afterward and had to have another CT scan of my kidneys on the 28th .  I remember feeling like I was going to have a nervous breakdown when I went for my third CT scan all alone.  I was so terrified I would end up back in the hospital.  (By the time I got to the rheumatologist he told me I was forbidden to have any more dye shot into my body for CT scans.)

At home, I would sit in my chair resting when I did not have to go to a doctor, for tests, or blood work. I remember how my daughter’s face lit up the first day I was able to greet her at the door after school, showered and dressed.

I had to wait weeks to get in to see the rheumatologist. My doctor said he was the best around.  He was right, he was  worth the wait. The first couple of years proved to be the hardest. I saw more doctors, gave more blood, tried all sorts of medications, had all kinds of scopes and tests, and a trip to the ER.  I ended up with severe pleuritis and on steroids.

I did have tremendous support from the prayer team I belong to and from family and friends.  They prayed faithfully for me and  my kidneys drastically improved. Thankfully, I did not need chemo drugs.  As things improved, I was also able to go off the steroids as well.

The story does not end here. Watch for the last part of this series but by no means the end of the journey.

Blessings, Leslie Rose K

If you would like to contact me apart from leaving a comment please email me at the following address

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Blog Writer Bio

Being a blog writer has its own special challenges, especially when your goal is to encourage people and offer strategies to help them reclaim their lives after a diagnosis of lupus or another autoimmune disease.

I have never written much about myself because I do not see that as the purpose of the blog. I was thinking that perhaps you, the blog reader, would like to know more about me, the blog author, and my journey thus far with lupus.

My entire adult life I have been plagued by headaches. After giving birth to my daughter in 1993 I had two miscarriages, one at 16 weeks and one at 8 weeks.  Later I found out they apparently checked for lupus.

After we moved to beautiful south central PA. and purchased our home, the yard work fell willingly to me and  I enjoyed it.  After a summer or two I did begin to notice aching joints. I used to wonder if I had Lyme’s disease but the discomfort would subside in the fall so I would put it out of my mind.

In early 2002 everything changed. After one day of working in the sun, the skin on my forearms erupted with an angry red rash and stayed that way for months. My cheeks were red all the time, my hair was falling out and I was stricken with ongoing fatigue. The worst part of all this:I did not have a  doctor I could call.

I could not find a doctor to take me on as a patient in a timely fashion. I remember sitting at the kitchen table discouraged and crying when my husband called from work. A co-worker had a lead for a great doctor. I called only to hear she was not taking new patients but her brother would be coming on board Monday and he could see me.

As you probably know it can be extremely hard to find a doctor who will take your symptoms seriously let alone reach a diagnosis of lupus. This doctor took me seriously. We started the journey together to find out what was wrong with me.

My first stop was with a dermatologist. I cannot say the dermatologist took me seriously. I think he wanted me to be almost bald before he would believe my hair was falling out. He did not even recognize the butterfly rash while years ago it was often the dermatologist that diagnosed lupus because of it.

By this time, I was also suffering with low-grade fevers and sore throats every day from late afternoon on. Since we struck out with the blood work and the dermatologist I  was sent for a liver biopsy to check for Hep C. Two weeks after the biopsy, October 11th, I found myself heading for the ER with a high fever and quaking that would not quit.

Next time I will share about my experience in the hospital.  It was certainly one to remember.

Blessings, Leslie Rose K

If you would like to contact me apart from leaving a comment please email me at the following address

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