Posts Tagged ‘SLE’

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.
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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.

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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.

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Adam

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.

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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

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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.

Riding your way to resolution success. Part 3

Remember learning to ride a bike? If you did not have training wheels someone had to hold the bike up for you. Once you got on, they had to hold you and the bike upright.  I am fairly certain that no one went riding down the road without some sort of help, the first time on a two-wheel bike.  And, I can almost guarantee that once you learned to ride, there were some falls along the way until you became really good at it.

My parents  divorced when I was young.  My mother’s cousin used to come from New York to Ct. to visit us occasionally.   Sometimes his cousin and his future brother-in-law would also visit.  One time they all chipped in and bought me a white Schwinn ten speed.  It was thrilling,  to say the least.  I was not really big enough for the bike, but I proudly rode it any way, until one day, I rode it right into a neighbors car.

Setting a goal, and attempting to reach it, is much like learning to ride a bike.  Sometimes the goal can seem so big, you feel like  an eight year old riding a big Schwinn ten speed.   It can be easy to get  frustrated with setbacks and feel like giving up.  I want to urge you to keep getting back up and keep working toward the goal.  Just like learning to ride a bike, you will learn to master yourself, and one day reach your goal.

Riding my stationary bike has not been perfect.  Health issues, life and my inconsistent behavior  keep me from being a model exerciser but I keep plugging along.  The benefits keep drawing me back to the bike.  I would like to encourage you to do something special for yourself by working toward a life changing goal that has been on your heart for a long time.  (I added another one this year, but more on that next time.)

I am praying this series on resolutions will be  a life changer for you. Whether you have  lupus or not, you can do it.

Many Blessings, Leslie Rose K

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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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Check HERE for some  good information from Proactive Change.

Resolution Failure or Success and Lupus Part 1

It is almost the end of January,  by now most new year resolutions have gone by the wayside.  People have become disenchanted, it was more difficult than expected.  They did not have a plan, no road map on how  to get from point a to point b.  It became too hard, too fast.  Does this sound like you?   Do you still  make resolutions at the start of a new year?   According to Statistic Brain,  45% of people make new year resolutions with 8% of these people reaching their goal.  That equals less than 4% of the population making and meeting a new year resolution.

I found it interesting that people who make a resolution are ten times more likely to attain their goal than those who do not make one.  (Statistic Brain) By the way, resolutions are not just for January 1st. Last year I made mine a few weeks into the year when desperation took hold, and I had no choice, but to act.  More on that, next post.  (No, it was not the number 1 resolution to lose weight, though it should have been.)

For people living with  autoimmune diseases, the list  of resolutions might look a little different than the top 10.  See Statistic Brain.  Most resolutions will have to be modified, will likely take longer and need more resolve to stick with it.  Unless someone lives with lupus, Sjogren’s, or another autoimmune disease they will have no idea what an endeavor it could be for us to accomplish certain resolutions.   Sometimes the people we live with do not  understand.  Sometimes we struggle with the adjustments that need to be made.   It is a life long process.

So what exactly is a resolution?  The root word here is resolve,  an action word that means to come to a definite or earnest decision about something, or to have determination.  Basically, it means making up your mind to do something.  Setting a goal is another way to look at making a resolution.   I found when I set a goal I tend to have a different attitude toward it.

Have you been afraid to set goals?  Are you discouraged with things in your life? Your weight, your lack of physical activity?  Perhaps it is the rut you are in, or the cleaning that keeps being put off?  Any number of things can weigh on us that we would like to change. It is easy to feel defeated before we even begin.  I believe, as we explore this together next time, you will come away with some ideas that could put you on the road to resolution success.

Your homework is to think about what resolution you have you made in the past, consider the outcome and whether you were happy with it.  If you thought you could not fail, what would you resolve to work on this year?  Feel free to leave comments and get the conversation started.

Jessie Wilcox Smith: Book

On a personal note, I am sorry it has been hard getting back into the groove of writing after a busy holiday season and dealing with the physical repercussions that come with the  winter weather.  I hope you are getting through the season without too much difficulty.  Don’t forget, be  kind to yourself, rest, and do some fun things.

My prayers are with you….Leslie Rose K

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Faking Lupus?

JUST BECAUSE YOU CAN’T SEE IT DOESN’T MEAN IT’S NOT THERE

Last time in Pink Sheep and Living with Lupus I asked a couple of questions.  Do you wish people could tell you struggle with autoimmune disease or are you glad that they can’t tell most of the time?  Is it a blessing or a curse looking good?

Here is what a few of you said: 

  • Brenda prefers to look good, knowing that the people who love her, know her struggles, and see past the outward appearance.
  • One person, only wants the people closest to her to know about her illness, but is quick to share her fibromyalgia story with those needing empathy and encouragement.
  • The Lupus Adventurer likes to use the Mylar Rash to educate people about “the invisible illness” lupus. It does bother her sometimes when people do not believe she is really sick.
  • One person does not like using a motorized cart at the store.  They believe people will think it  is because they are overweight and out of shape.
  • One woman says it hurts when people  imply it is something  she is doing, or not doing, that is the cause of her  illness.  She says it can be easier to just not  talk about it.

Living with systemic lupus, Sjogrens, and fibromyalgia is challenging enough most days, let alone to feel as though we have to defend how we feel or don’t feel.  Some of these comments show  how  people judge by outward appearances.

When my daughter was much younger she looked at me in disbelief  and a little disgust when I could hardly walk upon exiting our vehicle.  Why you say?  Because just the stop before I could walk almost normally.   My own daughter thought I was faking it.   I had to  get beyond my hurt feelings and educate her.  Now grown, she is very familiar with the unpredictability of the illness.

Very few people know what lupus is, let alone its symptoms.  I have answered many questions about lupus  and Sjogren’s because most women are genuinely interested to find out about these diseases.  So, instead of getting a little frustrated when people tell  me I look good, I will begin using that as another chance to educate someone about lupus.  How about you?

Back to our question.   Overall, it seems people would like those around them to know when they are not feeling well and need some extra help or grace.  When people cannot detect what our status is, it is important for us to effectively https://i0.wp.com/toddlerontour.com/wp-content/uploads/2011/01/work1.jpgcommunicate our needs. Depending on the situation, looking good can even have its advantages.

As always I welcome your input. Thanks to those who took time to comment or write to me.  I pray God will strengthen you.

Pink Sheep and Living with Lupus

Several weeks ago the Bing page had a photo of sheep in the hills of Ireland with a hint of pink on their backs.  The image of  the sheep reminded me of the ongoing “joke” among some of us with systemic lupus erythematosus about how good we  look.  A phrase that can wear thin on a person after a while, especially if they do not feel well day after day.

JUST BECAUSE YOU CAN’T SEE IT DOESN’T MEAN IT’S NOT THERE

The sheep made me wonder if it would be preferable to have a mark, signaling the world…I live with  Sjogrens  and the effects of lupus every day?  Or is it actually a blessing in disguise that I  look good most of the time?

Early in my diagnosis, a well-meaning friend  introduced me to  new people as Leslie with lupus. After a few times of that I began to  stay clear of her.  That was not how I wanted people to meet me, see me, or remember me.   I am also often reluctant to ask for help, or tell people certain things are difficult for me to do, or that I will pay for it later.  As much as I am able, I prefer being a plain sheep.  While my husband feels I should be  more vocal about my situation and needs,  I cringe at the thought most of the time.

How do you feel about this?  Do you wish people could tell you struggle with autoimmune disease or are you glad that they can’t tell most of the time?  Is it a blessing or a curse looking good? I would love to hear your thoughts.

I know there are those who do not struggle with this issue. You have lupus and it is quite obvious.  You probably wish you had the problem I, and many others have.  I would like to hear your thoughts.

More on this subject next time.  If you enjoy reading this blog, click here to  Subscribe by Email.

Many blessings to you….Leslie Rose K

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