It has been extremely hard to focus on a blog post with my daughter home from her second year of college.  I am counting down the days that we can spend together.  Even she, has made being home, a priority.

I recently read a post from an informative  blog I follow, Lupus, the Adventure Between the Lines, that I thought would be great to share with you.   Most people dealing with lupus struggle with at least one of these problems.

• lupus brain fog
• central nervous system involvement
• peripheral and autonomic nervous system lupus

I struggle with some of the issues in the post, having  gone for an MRI  at one point and neurological testing. I found this article very informative.  I wish  doctors were a little quicker to recognize certain lupus symptoms in us and discuss them more freely.   It can be  frustrating when they don’t.

For me, brain issues are an ongoing struggle I  try to keep in perspective, and do not discuss with  most people.  It can be  demoralizing when people continuously tell you they have the same problem.  If you struggle with lupus fog, memory problems or word retrieval problems etc. due to lupus, I highly recommend you read this article.  Be encouraged, you are not alone.  If you need someone to understand your dilemma,  I highly recommend connecting with others who have lupus.

So what is the big deal  with my daughter being home from college? In a few days she will be heading off to camp to work.  She will return the third week of July for 4 days and then go overseas for a year.  She will go first to India, on an internship, then to China for her junior year of college.  I do not think any of us feel prepared for what this will be like.  Our only child across the globe (she has never even been on a plane before!).

There is much to take care of. My body is struggling, my heart is in some turmoil.  At least she will still be in PA. for a couple more months.  Right now, it is just good to have her home.

If you enjoy reading this blog, click here to  Subscribe by Email. You will  receive it directly in your inbox and  not miss a post. May God strengthen and encourage you.

Until next time, many blessings….Leslie Rose K

leslie@dominateyourdiagnosis.com

I love this quote that is at the end of each of my blog posts.  The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James (1842-1910)

“William James was a pioneering American psychologist and philosopher who was trained as a physician. He wrote influential books on the young science of psychology, educational psychology, psychology of religious experience and mysticism, and on the philosophy of pragmatism.”(Wikipedia) He was one of the first to discuss free will and it’s implications for the individual.

This quote says to me, that I do not have to be at the mercy of negative thoughts that want to drag me down, discourage me, or even debilitate me. Whether you deal with an autoimmune disease such as lupus or not, there is certainly no shortage of negative thoughts. They come storming into our minds. They sneak into our minds disguised as other things.  In some cases, they try to take up permanent residence  in our minds.  We do not have to succumb to them.  We can choose not to walk in agreement with them.

If the pain, discouragement, disillusionment etc.  you live with daily makes it hard to see anything positive in life, perhaps Tony Robbins’ powerful exercise Emotional Flood, will help “reboot” you.   If it is out of your comfort zone, watch it one time first. Consider trying the exercise yourself when you feel ready.  Keep in mind, most of us have no trouble getting in touch with all the negative in life.

When I saw this exercise, it reminded me of something I do sometimes when I am singing in church.  In my thoughts, I  travel back through my life. Sometimes  I think of  the many times that God intervened in my life, other times, the many blessings that I have been given, or the times when I felt God close.

I am sure you realize by now, that the  Grace Journal  is a great tool, but it is not enough.  There are many resources available to help change our thought patterns-people, music, words, books and media etc.  For me, two of the most influential sources of  help come from God’s Word and the Word as it is preached through my pastor each week.  There is life in God’s Word that I cannot find anywhere else.

As we fill our minds with positive influences we will find our thoughts become more positive.  We will begin to feel better and have more energy.  We will even be more pleasant to be around.

Can we get rid of negativity once and for all? If we choose to exercise our free will we can alter our life by altering our attitude and reclaim our life after a diagnosis of lupus/autoimmune disease.

If you enjoy reading this blog, click here to  Subscribe by Email. You will  receive it directly in your inbox and  not miss a post. Until next time…may God strengthen you for the task.

Many Blessings….Leslie Rose K

leslie@dominateyourdiagnosis.com

Negativity is like working a stair stepper, you put out a lot of energy but do not actually go anywhere.  However, unlike a stair stepper which strengthens your body, negativity weakens your body.

Dr. Robert H. Phillips in his book Coping with Lupus says a negative attitude can make existing emotional problems worse whether or not they are caused by lupus. Improving our attitude, will improve every other aspect of our lives.  Concentrating on the positive is key here. There are many resources available to help with this.  You can search on-line or go to the library. He  believes if you get one good idea out of book it will be worth what you paid for it. (My godmother used to say this about cookbooks. If you remember from a past post, I have no shortage of cookbooks.)

In November, I wrote about the Grace Journal.  I have faithfully been keeping a journal since then, writing in it at least five times a week, as recommended.  I do this right before I go to bed and find it to have a calming effect.  I am reminded of my many blessings and could sometimes fill a whole page with my grateful thoughts.  It has boosted my happiness and quality of life just like Dr. Emmons said it would.

Several years ago when I was outside mowing,  I was silently wishing I had a different house. I wanted one with more personality.  This was not the first time I thought about this. It was becoming a habit. Discontentment was slowly getting a foothold.  That day on the mower I sensed God speaking to  me about covetousness. The Oxford dictionary says it is “having or showing a great desire to possess something, typically something belonging to someone else.”  In this  age of living big, that is easy to do.  Now, whenever these thoughts come to my mind, I am reminded of that day and thank God for the blessing I have.

When you start doing something like this you begin to see how truly blessed you are.   There is always someone better off than us or worse off than us. The peace comes when we are content with our own life and ourselves. It is proven that when we think positive thoughts, we will feel better.  I have found when I  feel better emotionally, I feel better physically and even have more energy.

When you deal with a chronic illness like lupus, it is very easy to covet what others seem to have in the way of health, freedom from restrictions and pain etc.   It takes practice to keep your mind from focusing on the negative.  Starting with a Grace Journal will be a big help.  It does not have to be just for bedtime.  If you really struggle with focusing on the negative, carry it around with you. When you catch yourself beginning to focus on the negative, whip out your journal and write something positive. If you do this often enough you will find that your thought patterns will begin to change and you will reap the rewards  in your mind, body, and life.

What are your thoughts on this subject?

If you enjoy reading this blog, click here to  Subscribe by Email. You will  receive it directly in your inbox and  not miss a post.  Many blessings. Praying God will strengthen and energize you this week.  Leslie Rose K

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

The countdown is on for us. The end of July our family undergoes a drastic change as our only child heads overseas for almost a year.  I find myself trying to weave  memories into each visit for her to carry with her to China, not big things, but little  things.

I offered to make chocolate covered marshmallows for Easter, but she wanted store-bought, chocolate covered  marshmallow eggs.  So, because we love her so much : ), my husband and I made homemade marshmallows and marshmallow eggs.

At this writing, they have not been covered with chocolate yet, but I am hopeful they will be a success.  I went on-line and got a variety of ideas on how to mold the eggs. No one recommended using a deviled egg tray, which by the way works perfectly, as you can see.  My one regret, that I did not have more trays. 

It got me thinking about the things people do for love.  From marshmallows to bungee jumping and everything in between, people find crazy ways to show their affection.

Over 2000 years ago, God showed His love for us by allowing His son to come to this earth and become a bridge between us and God.  It sounded crazy.  Right up until the end it did not seem as though His plan was going to work. Jesus was killed, buried in a tomb, everyone thought it was over. But then, Resurrection Sunday, the tomb was found to be empty.

Josh McDowell offers extensive evidence for the Resurrection of Jesus.  The changed lives of millions and millions of people over the last 2000 years also offers indisputable proof in the  power of the living Christ. Our acts of love cannot compare  to God’s extravagant expression of love.  As much as I love my daughter, He loves her more. That thought consoles me as I prepare myself to send her off.  Marshmallow eggs, just a little i love you….Good Friday, a HUGE I love you.

Praying you will experience God’s extravagant love this Easter and in the days following.   Leslie Rose K

If you enjoy reading this blog, click here to  Subscribe by Email. You will  receive it directly in your inbox and  not miss a post.

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

Do you have big dreams for your family, your future, your health?  Do you know what to do with those dreams?  Or have your dreams fizzled down to nothing for lack of  direction and inspiration?

Mark Batterson dreams big.  In his most recent book The Circle Maker we read about many of those dreams and how they were fulfilled.  He walks the reader through the logistics of dreaming big, praying hard, and thinking long. One of my favorite sections was on goal setting. It was interesting to read his perspective and to get some tips on the subject.

Mark works hard to inspire the reader to be consistent in prayer and not give up. He offers many good arguments for strong, concise, faith-filled praying. By the same token, I found that while Mark always likes to use catchy phrases and clichés, this book went a little too far for me in that area.

Phrases like, “God isn’t offended by big dreams; He’s offended by anything less.” ( p.55) and “I promise you this: God is ready and waiting. So while I have no idea what circumstances you find yourself in, I’m confident that you are only one prayer away from a dream fulfilled, a promise kept, or a miracle performed” (p. 13),  did not sit well with me.  I like to keep things biblical, especially when I am speaking for God. On the other hand, he says we must come to terms with the fact that God is for us. There is nothing cliché about that. God IS for us.

This book will build your faith, though some of the author’s writing is definitely a little over the top.  I like Mark. He is definitely a trend setter; a visionary with big goals and big dreams. I think you would enjoy reading all about it, and be inspired in the process.

I received this book from Mark, for free, for the purpose of reading and blogging about it.     If you enjoy reading this blog, click here to  Subscribe by Email. You will  receive it directly in your inbox and  not miss a post.

Many Blessings to you and those you love, Leslie Rose K

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

Have your emotions been overwhelming to you?  Do you have less control over them than before you became ill? Do you feel like you are on a roller coaster ride most days?  Pain. Fatigue. Sleeplessness. Headaches. Isolation. Life with lupus can  be one of  ups and down’s. Dealing with an autoimmune disease can take its toll on one’s emotions.

I went through a disheartening period when my word retrieval was bad and my memory was giving me fits.  I would ask the rheumatologist about it periodically until one day we decided it was time to get it checked out.  My first stop was to see a neurologist. From there I was sent for a costly MRI that looked fine.  My last stop was to a neuropsychologist for a lengthy assessment.

The doctor had several insightful observations to share with me about myself.  In the end, some of the best advice he gave me was to “try not to make too much of it.”   I left the office determined to stop explaining my blunders to people and stop getting upset over the problem.

Why did I even bother to get this problem checked out?  It was very distressing to me.  I could not find any answers.  I was tired of being laughed at, questioned and feeling stupid.  I did not want to be around people some days.   It is humbling when you cannot effectively communicate because you can not recall the details of things you know, or you say the wrong words.

You may find yourself in a situation you feel helpless to change. There is help available. Dr. Phillips, in his book Coping with Lupus, says there are a number of medications available that can be effective in dealing with things like anxiety, depression, and anger, etc.  He says there are mood elevators and antidepressants.  There are also people who can help.  Psychologists, psychiatrists, counselors, social workers, pastors and other professionals are available.  Your doctor or local lupus chapter could recommend someone.  No one has to walk alone.  But, you do have to be proactive on your own behalf.

Would I have done all the testing over again?  Yes.  I gained valuable insight into myself, some reassurance about my condition, and a strategy that has helped me do life.  Did I get all the answers I wanted? Unfortunately, no.  Did I stick with my decision not to explain things to people? Yes and no.  What other valuable lessons did I learn?  I had to use more effective coping strategies in my life, exactly what we will begin to discuss next time.

If you are on a roller coaster, don’t you think it is time to get off?  There is nothing wrong with reaching out for help.  It is easy to forget there are people out there trained for this very reason.  I hope this has helped you. Until next time, I pray God will strengthen you, encourage you, and supply someone to meet a special need that you might have, whether emotional, physical or spiritual.  If you enjoy reading this blog, click here to  Subscribe by Email . You will  receive it directly in your inbox and  not miss a post.

Many Blessings to you and those you love, Leslie Rose K

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

Early on in my diagnosis, when I was much sicker, I inadvertently offended someone who told me how good I looked.  I was upset by their disapproval of my honest response.   I let the situation isolate me further because I then found it difficult to share with others what I was really going through.

For a variety of reasons, I found that with each passing year, I needed a little more emotional support than what I was able to receive from my family and friends.  I suspected there were others in the same situation.

I have since discovered on-line communities offering support on websites such as  Facebook and WebMD. I found support groups that met on the phone and in person.  It confirms to me that I was right.  It also shows me that support is crucial to our emotional well-being.

Some people are blessed with family and friends that genuinely understand what they are experiencing and are a tremendous support to them.    If you have people like that in your life, treasure them.  They are a rare gift.

Others find support from their church.  The prayer ministry I am a part of was a huge support for me.  The pastor in charge prayed tirelessly for me.  Some of the members listened to me, encouraged me, and prayed for me. I am sure that it was the many prayers that sent my kidney problems into remission in record time.  The rheumatologist marveled over my progress in that area for several years.

A support group specific to the issue you are dealing with can offer  benefits not usually found in normal daily life.  What makes support groups unique?

• they verify that you are not alone in your struggle
• they urge you to press on
• they give valuable insight on the disease
• they give valuable resources as to treatment possibilities
• they give suggestions on how to make life easier with the disease
• they give opportunities to make new friends, ones that understand your unique situation

It does take effort to attend a support group. You may not feel well enough to attend every meeting.  Do what you can, but keep in mind it is well worth the effort. If you are not thoroughly pleased with the group and how it is run, decide to be a positive influence and help guide it in a more positive direction. Although you may feel pretty good most days and not need a lot of support; there is probably someone there who  can use your encouragement.

Being in a support group has taken away my feelings of isolation.  I know I am not alone in my daily struggles with lupus.  What was the offending remark I made many years ago and have hardly ever said since? “I wish I felt as good as I looked.”   If that situation happened today, I would  chuckle with my support group about it and about how good we all look.

Until next time, many blessings to you and your support team. Leslie Rose K

If you are following along in our book Coping with Lupus, Dr. Robert Phillips, Ph.D agrees with me. pages 184 & 185

If you enjoy reading this blog, click here to  Subscribe by Email . You will  receive it directly in your inbox and  not miss a post.

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

No one is more aware than I am, that I said I wanted to post a little more often. It seems impossible with the amount of things to attend to, the struggles of my body and the speed with which the weeks go by.  Many of you feel the same way and  it does not seem to matter if you work outside the home or not.

Living with lupus and/or other autoimmune diseases gives us  more in common, such as caring for our emotional well-being.  There are many practical steps we can take on our own behalf. Today we will explore getting the best medical care possible.

If you have dealt with doctors any length of time, you would probably agree not all doctors are good, or  not a good match for your particular needs or personality.   When I met with my rheumatologist for the first time, I was interrogated about why I was traveling so far to see him (45-50 minutes) and why I was willing to wait so long for my first appointment.  I told him the answer was simple, my family doctor recommended him, and said he was the best he knew of in the area.

I have seen my rheumatologist for over 9 years,  overall, he has lived up to my primary care physician’s  opinion.  Among other things he

• faithfully monitors my condition
• watches my medications carefully
• does not over medicate me
• tries his best to hear my concerns, though it may take a couple of visits.

It took time for me to get to know my doctor and for him to get to know me.  I do not agree with everything he says, but respect his experience and knowledge, and trust that he has my best interest in mind. It is important to be able to communicate with your doctor. If you are having a difficult time, there are resources on the web that can  help you.  You can start here with a fantastic article from the Lupus Foundation of America.

Some doctors may be a little more challenging to warm up to.  It can take time to build  rapport.   If you are questioning your care, be proactive.  It is crucial you get the best care possible in dealing with lupus and the other things that crop up.

Next time, we will discuss support groups.

Blessings to you…Leslie Rose K

If you enjoy reading this blog, click here to  Subscribe by Email . You will  receive it directly in your inbox and  not miss a post.

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

As we begin this series on coping with our emotions, I would urge you to follow along with me even if you do not have lupus.  I think the emotional challenges are the same for many other  auto-immune diseases.  Life itself, has situations that  can cause emotional distress. We probably all know someone who could benefit from this knowledge.

Can you remember how you felt when you finally received your diagnosis?  I initially had a sense of relief.  It was confirmed, I was not crazy, there was something wrong with me, and it had a name.

My relief was short-lived as I learned about lupus and began treatment.  I remember being fearful about my future, having feelings of anxiety and less than adequate coping skills.  I remember feelings of sadness and depression.

I had mixed emotions that changed at the drop of a hat.  Emotion by definition means a strong feeling deriving from one’s circumstances, mood or relationships with others. (Oxford Dictionary Online)  Strong is the operative word here.

Dr. Robert Phillips Ph.D. and author of Coping with Lupus says I experienced normal responses to a life changing event.  He also says, “the more severe your reactions are, the more they will interfere with your ability to cope.”  p.181

It stands to reason then, that “one of the most important aspects of being able to cope with lupus is the ability to control your emotions.”  p.181  A person’s reactions will not only impact their life, but the lives of those around them.  Where do we start in managing our emotional reactions? Dr. Phillips says:

• get the best medical care possible
• join a support group
• learn about medications that can help you cope
• explore professional counseling
• use effective coping strategies

Whether you have just been diagnosed with lupus, or have dealt with lupus for years,   each one of us, has emotional issues we struggle with from time to time.   I hope you will join me, as we  explore this topic.  In the meantime, you may want to consider picking up a copy of Coping with Lupus.  Until next time……

Many blessings to you…..Leslie Rose K

If you enjoy reading this blog, click here to  Subscribe by Email . You will  receive it directly in your inbox and  not miss a post.

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

Recovering from the fall I had before New Year’s,  reminds me of the many days early in my diagnosis of lupus when I had to rest and wait.

I had no choice but rest, I could not manage anything else, and wait, for better days.  On the bad days, it is easy to think better days will not come, but they do. It will be a “new” better though.

It is making peace with the “new” better, that can be the biggest challenge of life with auto-immune diseases such as lupus.  Make peace we must, if we are to truly proceed with a life worth living.

Making peace is not an easy task. It is something you have to do over and over. Some may see it as resignation and perhaps it is. I do not like to phrase it that way.  Resignation has negative implications to me where peace does not.

Resignation implies surrender or submission while peace implies harmony or tranquility.  My nature does not lean toward surrender very easily, but longs to walk in tranquility.  The thought of surrendering to lupus etc.  is unpleasant to me.

Robert H. Phillips, Ph.D., author of Coping with Lupus, recognizes the tremendous impact coping with lupus has on our emotions.  He feels the most important question is one that only we can answer:”Will I give up living because of lupus, or will I continue to live despite lupus?”

Here is a quick overview of his book.

• Lupus: An Overview
• Changes in General Lifestyle
• Your Emotions
• Interacting with Other People

Next time, we will begin a journey exploring our emotions.

I am going to try a new approach the beginning of this year. I will write more frequently, less formally and hopefully shorter.  I would like to get more dialogue going.  Right now I would like to know your viewpoint. Do you feel you have to surrender to lupus or make peace with living with lupus. Please explain.  (Sorry for the previous email. The post was shot out there before it was done. That is what one slip of the finger can do!)

Until next time…..Blessings…Leslie Rose K

If you enjoy reading this blog, click here to  Subscribe by Email . You will  receive it directly in your inbox and  not miss a post.

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com