30 Posts of enCOURAGEment post 22

I am sure we have all struggled with medical and/or prescription coverage at one time or another.  Most likely, like me, you  have gone without a particular medication because of cost and/or insurance denial.  It is not even uncommon to be dependent on a medication and have coverage revoked or changed midstream..

I have been on a medicine that went generic several years ago but still pay the non generic price for “generic medication”.  Thankfully I only take 1/4 pill twice a week or this would cost substantially more per month.   I am not counting on Restasis coming down in price  for decades.  I manage to spread that out by being on two days and off one. Generic plaquenil, perhaps the oldest drug for lupus, thankfully works well for me so far. 

Right now, I have no one to tell me they will not cover what I take because we have the joy of being on a Health Savings Account.  That means, the insurance pays almost nothing until we meet a huge deductible, of their approved expenses.  I am  thankful that I have not incurred any extremely large expenses since this started a couple of years ago.

Health insurance coverage is becoming a complicated thing for most people  and promises  to get more complex and challenging as the years progress. Adam can attest to this.  Adam our Tough Mudder participant (post 20)  finds himself in a tough situation again.  Here is what he had to say.

Adam at the
Tough Mudder

I need to enlist your help to spread the word about how horrible a company BCBS of Illinois is to its patients.  They are making me go through an appeals process again this year for a drug that has been life saving for the past six years that they approved last year.  This time around they are denying it every step of the way and yet my doctor is the one who wants me to have the treatment.  They are going based on their own accord. Please help and spread the word on how terribly they treat Lupus patients.

This week I received this news.

I have reached out to BCBSIL through social media (Facebook and Twitter).  I will keep you posted on what happens.  I have also contacted my HR benefits department about this issue, so I have a little assistance from them, as well as the Lupus Foundation, Chicago Chapter. In addition I am starting the ball rolling with my attorney.

The Lupus Adventurer

I know that this medication has given Adam his life back or he would have never been able to compete in the Tough Mudder.  As a man with lupus, he faces some unique challenges while supporting his  family, and raising a young child, at the same time.  Adam is not alone in this fight for coverage.  The Lupus Adventurer went through the same thing with Rituxan in 2011. Though she was not successful with her fight she trusted God for another solution to help control her lupus.  That help did come, in the form of  Benlysta.  You can follow her journey with this new cutting edge lupus drug, on her blog.

The good news is, there are people and resources to help.  For years there were no new medications on the horizon for people with lupus.  Many people have worked tirelessly for years to change that, and they did.  But as controversy swirls around some of these medications we see there is still much to be done on behalf of those of us dealing with lupus, and other autoimmune diseases.  Even so, we can not lose heart.

Pray along with me that Adam finds resolution for his situation.  You can leave any comments you like here for Adam and I will forward them to him.

UPDATE: I know I just posted this post, but Adam has received news that his appeal was won for 2013.  That was a quick turn around.  I think his aggressive, no nonsense approach was quite effective and a lesson for others.

I am reminded of this comforting portion of the bible that says:

Hear M Ward
sing Psalm 61
Click Here

Hear my cry, O God, listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.  Psalm 61:1-3

Be encouraged, we are not alone.  There are people all around us helping, supporting, praying, and loving us.  There are people we do not even know, working  to better the future for all those with lupus etc.  There is a God who cares for us.  He longs to help us carry the load, if we would look to Him.

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.

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

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.

Until next time….Leslie Rose K

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http://lubbockonline.com/sports-columnists/2011-12-01/batch-adversity-brings-out-best-some-people-worst-others#.UbUCfpxj_Kd

http://www.post-gazette.com/stories/sports/steelers/steeler-rb-baron-batch-art-recently-featured-at-festival-in-texas-690835/#ixzz2VkuU36SS

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

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, barely 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.”  I 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?).

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.

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.

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 Post19

Lupus, like many other autoimmune diseases, can easily change a person’s whole life around.  It is easy to slip into a rut or a specific mindset that does not bear good fruit in our lives.  It can even make things worse without us realizing it.

A few months ago, while sitting in my living room, my eye caught the light switch plate near the front door.  I was embarrassed by what I saw there.  Silver, decomposing duck tape covering one half of the plate.  That tape was put there quickly, years ago, for a very good purpose, but it had become extremely unsightly and I didn’t even see it any more.

I was struck by the notion that there are things in my life that others see, but I do not notice anymore.  Things that need to be changed or updated.  While the tape kept us from shutting off power to the top half of all our living room outlets, it definitely needed to be changed.

This proved to be no quick task.  First, I had to get the cover off the wall.  Then, it was a chore to scrape off the hardened tape.  I had to get the Goop out to remove all the hardened glue.  I had to  soak it, rub it, soak it, and rub it some more, until it eventually came clean.  Black electrical tape would have been an ideal replacement, but that day I had to settle for blue painter’s tape.

What is in your life that you do not notice anymore because of chronic illness?   I had to work on attitude, exercise and weight.  I tackled them one by one, in that order.  I put enough time between adding challenges so each would become habit, and build  on the other.  I wish I could say it is easy, but like getting that crusty old tape off the light switch cover, it is taking lots of elbow grease.  Two years later, I do not know if others see the difference, but I do.  Best of all, I feel the difference.  Unlike the light switch cover, this is an ongoing process that I must stay on top of, or I could find myself  back where I started.

I encourage you to gather up the courage, look around your life, and see if there is something that needs to be updated or changed.  Maybe even ask a trusted friend or spouse for input.  The great news is, if I can do it , you can do it.  You won’t be disappointed, especially when you start feeling the results in your body.

Next time, you will meet guest blogger Adam, diagnosed with lupus in 2006. You will get to read about the unique, huge challenge he undertook this year.

Until then….Many blessings, 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

6 Ways to Cultivate Courage During Serious Illness I am reposting an  article on courage written to Vibrant Nation readers. This writing has many great tips that can help those of us dealing with lupus and other auto immune diseases.  The author, Dr. Caryn Mirriam-Goldberg, Ph.D., is the 2009-2013 Poet Laureate of Kansas. Her career as a poet, fiction and non-fiction writer, teacher, mentor, and facilitator focuses on how literature can help us live more meaningful and vibrant lives. As founder of Transformative Language Arts, she also values social and personal transformation through the spoken, written and sung word.    Please read Caryn’s message. I think you will be encouraged and come away with some strategies you can use. Link for more on Caryn

Former Kansas Governor Mark Parkinson and Caryn at the 2010 Governor’s Arts Awards

First posted September 25, 2009, Vibrant Nation

When I was first diagnosed with breast cancer, I wanted to crawl into bed and sleep until it was all over, or more appropriate to my usual behavior, keep crazy-busy so I could avoid feeling my own mortality and the impending losses of my breast and various and sundry other body parts. But life has a way of nudging us out of our comfort or denial zones, and in time, I found myself falling into bouts of “fear storms” — waves of overwhelming fear about dying that made me terrorized but eventually passed as well as into the arms of so many friends and family who held me up with their courage until I found my own. In my new memoir, The Sky Begins at Your Feet: A Memoir on Cancer, Community, and Coming Home to the Body, I write about how my community, friends, family and the beauty of the earth and sky helped me find my feet and how to walk into the new territory of my life. Here are some ways to cultivate courage for whenever you or loved ones face a serious illness.

1. Let Yourself Feel Whatever You Feel: In my memoir, I write about my hairdresser of over two decades giving me a buzz during chemo, and telling me, “Just feel whatever you feel.” By the end of the cut, I was scared, and she was crying, but it was an important moment that showed me how essential it is to just feel the fear, uncertainty, doubt, confusion, intense longing for an answer, anger or whatever else visits. The famous Persian poet Rumi writes in his poem, “The Guest House,” how we need to welcome whatever shows up in our emotions with curiosity and tenderness. He writes:
   

   The dark thought, the shame, the malice,
   meet them at the door laughing,
   and invite them in.Be grateful for whoever comes,
   because each has been sent
   as a guide from beyond.

   I believe so much that the only way out is through when it comes to the feelings that arise during illness. To find the courage, you have to feel the fear. To land in peace, you need to ride through the anger.

2. Treat Yourself as Your Own Beloved: Many of us are far more seasoned at showering love, tenderness, understanding and patience on those we love — our children, parents, sweethearts — than on ourselves. Yet at times of serious illness, we need to treat ourselves also as our best beloved. Courage comes strongest out of love, and when we can show ourselves the kind of love that en-courages our spirit, then our spirit can march on forth and lead us through what’s to come.
3. Listen and Don’t Listen to Others’ Stories: Just like there’s nothing so fearful to many a pregnant woman than to hear other women’s war stories of horrendous labor, it can be overwhelming to listen to others’ stories who have been through the same diabetes, Parkinson’s Disease, cancer, depression or other health crisis you’re facing. On the other hand, it can be immensely helpful to listen to stories of others’ courage and perseverance, how the chemo wasn’t quite as bad as they thought or the daily injections became routine after a while. Keep close tabs of your own needs and vulnerabilities at the moment when someone begins telling you their stories of this illness, and let them know if this is something you can hear at the time. I remember people crawling out of the woodwork to tell me things like, “I knew someone with the same diagnosis. She’s dead now,” things I truly didn’t need to know as well as “I’ve been there, and it’s hard, but you can do it.” Drink in the stories that feed your soul and avoid the fast-food stories that make you feel wasted.
4. Create a Sanctuary in Your Home: Having your own space to take good care of yourself, to feel peace and ease, and to be able to display cards, trinkets, flowers, candles, and whatever else people give you or you find that surround you with love is an excellent way to grow your own courage. For me, it was a greenhouse connected to my home that had a small, rough balcony, just big enough for an old chair and little table. I hung cards on the walls and railing, and put special books and gifts there. It was a place I could sit and retreat, even if my kids were right outside the door arguing over whose turn it was to play on the computer. Even if you don’t have another room to use, you can turn one corner of your bedroom into a sanctuary. Find a chair, and if it isn’t so pretty, throw a beautiful sheet or tablecloth over it, and find a small table or perch to fill with objects that symbolize the circle of those who love you. You might even gather some books or magazines that inspire you. Then just aim yourself toward this space for 15-20 minutes a day or more with the prescription to do nothing but relax and enjoy yourself.
5. Reach Out and Ask for Help: There’s no time you need a village as much as the time you’re facing a serious illness. What’s more, people want to help. Most of us feel greater meaning and purpose in our lives when we connect with someone who could use some help. By reaching out, you’re not only helping yourself, but helping your community. Contact any organizations you belong to (email can be particularly easy for this), call friends and family, let the word get out, and let the kindness of strangers and loved ones form a circle of strong love around you. Even if you’re somewhat private and uneasy about strangers dropping by with casseroles, challenge yourself to reach out just a little by contacting some friends, asking for some meals, flowers, drivers to take you to an appointment here and there, help with family or cleaning.
6. Remember, You’re Stronger Than You Think You Are: This is what my mother said to me when I found out I needed chemo and two or more big surgeries. It was true for me, and it’s true for you too. Just like we can strengthen our muscles through a little yoga here and walking there, we can strengthen our spirits through the heavy lifting of ourselves through big life challenges. If you feel you don’t have the courage you need now, just keep putting one foot in front of the other, and by the time you arrive at the next turn in the hospital corridor or long night after a difficult procedure, you’ll find you’re lifting yourself through. Remember also that the sign of true strength is tenderness: let yourself feel vulnerable, and then do whatever you need to give yourself greater support. Your strength not only expands your own capacity for courage, but it encourages those around you to grow their own courage.

Thanks to Caryn for her great insights on courage and coping with illness.  I trust you were as encouraged by this article as I was.  Perhaps you know someone who needs this information.  Until next time….Many blessings, 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 17

Have you ever been betrayed by a trusted friend or family member? Nothing stings more than that. The closer you are to the person, the more treacherous it can feel. David, biblical king, warrior, musician and poet, knew exactly what betrayal felt like. He penned the following words.

For it is not an enemy who taunts me—then I could bear it;

it is not an adversary who deals insolently with me—then I could hide from him.

But it’s a man, my equal,my companion, my familiar friend.

We used to take sweet counsel together;  verses 12,13,14a

As I was reading Psalm 55 in my bible it occurred to me  this is how it is living with lupus and many other autoimmune diseases.  They cause our best friend, our trusted companion to turn on us. As we live with lupus, and its many ups and downs, we get a sense of betrayal, over and over. One day good, the next, like a slap in the face, waking us up. Sometimes one hour good, the next not. Our body, our trusted “companion” in life has turned on us. We can no longer predict its actions or receive its full strength.

Have you ever cried out like David in the following section?

The terrors of death have fallen upon me. Fear and trembling come upon me, and horror overwhelms me. And I say, “Oh, that I had wings like a dove! I would fly away and be at rest; yes, I would wander far away; I would lodge in the wilderness; I would hurry to find a shelter from the raging wind and tempest.” Give ear to my prayer, O God, hide not yourself from my plea for mercy! Attend to me, and answer me; I am restless in my complaint and I moan…..     verses 4b to 8, 2

Can you identify with these feelings? For me the first few years with lupus were the most scary. I was much sicker, and I did  not know what to expect . As the years have gone by and my kidneys etc. have gone into remission it has gotten easier emotionally. One could say we have settled into a rhythm, my companion and I. It does not mean I do not live with the thought that things could change on a dime, I do.

So by now you are asking yourself where the encouragement is in this post.

One thing that David consistently did in the good times and the bad was communicate with God. He was a let it all out type of guy. He did not hold anything back when it came to talking to God. I think that is where many of us make a mistake. We feel God cannot handle our strong emotions. Or perhaps we do not know how to talk to God or where to even start.

The Psalms is a good place to start. You will see David pouring out praise and thanks to God. You will see him pouring out his heartbreak, anger and troubles to God. He used ordinary words that you and I would use. He did not disrespect God but he was candid. Personally, I think that is the kind of prayer God likes hearing. It says we trust Him. In my lowest, most desperate times, God is very close when I pray. I can tell Him things I know no one else would understand.

So here is the encouraging news. You do not have to walk alone. In the good times and bad, God longs to hear your voice. He longs for you to cast (give Him) your burden on Him, so he can sustain you. verse 22a

 Many blessings, 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 16

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The Old Fisherman

A True Story by Mary Bartels Bray

Our house was directly across the street from the clinic entrance of John Hopkins Hospital in Baltimore. We lived downstairs and rented the upstairs rooms to out-patients at the clinic. One summer evening as I was fixing supper, there was a knock at the door. I opened it to see a truly awful looking man. “Why, he’s hardly taller than my eight-year-old,” I thought as I stared at the stooped, shriveled body. But the appalling thing was his face – lopsided from swelling, red and raw.

Yet his voice was pleasant as he said, “Good evening. I’ve come to see if you’ve a room for just one night. I came for a treatment this morning from the eastern shore, and there’s no bus ’til morning. “He told me he’d been hunting for a room since noon but with no success, no one seemed to have a room. “I guess it’s my face… I know it looks terrible, but the doctor says with a few more treatments…”

For a moment I hesitated, but his next words convinced me: “I could sleep in this rocking chair on the porch. My bus leaves early in the morning.”

I told him we would find him a bed, but to rest on the porch. I went inside and finished getting supper. When we were ready, I asked the old man if he would join us. “No thank you. I have plenty.” And he held up a brown paper bag. When I had finished the dishes, I went out on the porch to talk with him a few minutes. It didn’t take a long time to see that this old man had an oversized heart crowded into that tiny body. He told me he fished for a living to support his daughter, her five children, and her husband, who was hopelessly crippled from a back injury. He didn’t tell it by way of complaint. In fact, every other sentence was prefaced with a thanks to God for a blessing. He was grateful that no pain accompanied his disease, which was apparently a form of skin cancer. He thanked God for giving him the strength to keep going.

At bedtime, we put a camp cot in the children’s room for him. When I got up in the morning, the bed linens were neatly folded and the little man was out on the porch. He refused breakfast, but just before he left for his bus, haltingly, as if asking a great favor, he said, “Could I please come back and stay the next time I have a treatment? I won’t put you out a bit. I can sleep fine in a chair.” He paused a moment and then added, “Your children made me feel at home. Grownups are bothered by my face, but children don’t seem to mind.” I told him he was welcome to come again.

And on his next trip he arrived a little after seven in the morning. As a gift, he brought a big fish and a quart of the largest oysters I had ever seen. He said he had shucked them that morning before he left so that they’d be nice and fresh. I knew his bus left at 4:00 am, and wondered what time he had to get up in order to do this for us.

In the years he came to stay overnight with us there was never a time that he did not bring us fish or oysters or vegetables from his garden. Other times we received packages in the mail, always by special delivery; fish or oysters packed in a box of fresh young spinach or kale, every leaf carefully washed. Knowing that he must walk three miles to mail these, and knowing how little money he had made the gifts doubly precious.

When I received these little remembrances, I often thought of a comment our next-door neighbor made after he left that first morning. “Did you keep that awful looking man last night? I turned him away! You can lose roomers by putting up such people!” Maybe we did lose roomers once or twice. But oh! If only they could have known him, perhaps their illness would have been easier to bear. I know our family always will be grateful to have known him; from him we learned what it was to accept the bad without complaint and the good with gratitude to God.

Recently I was visiting a friend who has a greenhouse. As she showed me her flowers, we came to the most beautiful one of all, a golden chrysanthemum, bursting with blooms. But to my great surprise, it was growing in an old dented, rusty bucket. I thought to myself, “If this were my plant, I’d put it in the loveliest container I had!” My friend changed my mind. “I ran short of pots,” she explained, “and knowing how beautiful this one would be, I thought it wouldn’t mind starting out in this old pail. It’s just for a little while, till I can put it out in the garden.” She must have wondered why I laughed so delightedly, but I was imagining just such a scene in Heaven. “Here’s an especially beautiful one,” God might have said when he came to the soul of the sweet old fisherman. “He won’t mind starting in this small body.”

All this happened long ago – and now, in God’s garden, how tall this lovely soul must stand.

——-

Our Lives are not determined by what happened to us, but by how we react to what happens, not by what life brings us but by the attitude we bring to life. A positive attitude causes a chain reaction of positive thoughts, events, and outcomes. It is a catalyst, a spark that creates extraordinary results.

Reblogged from Inspire21.com

Many blessings, Leslie Rose K

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

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