Tag Archives: miracles

The Circle Game

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Good things never last forever.  And bad things come and go too.  I’ve had a steady uneventful four months of relatively good health in the lupus department.  So it shouldn’t come as a shock to me when I see the obvious signs of a lupus flare starting to circle back again.  First it was about the kidney problem.  The nephrologist said I had lost some kidney function, but for now we will simply monitor the situation.  That was good news.  Now, I’m accepting the fact that the vascular rash that is the primary nemesis of my particular brand of lupus has returned.  The familiar cycle of hives on my face is, well, back on my face.  The small vessel vasculitis on my legs is slowly reappearing.  My arms, torso, back and thighs are affected again.  The stinging feeling on my arms and back has returned.

I have no idea why.  It just is what it is.  And the circle game begins again.

I’m diligently taking all my medications.  I get infusions at the hospital every three weeks.  I have a very long and expensive trail of paperwork that my insurance carrier sorts through on a monthly basis.  I’m an insurance underwriter’s nightmare.

So this is when I start trying really, really hard to be Little Miss Pragmatic.  This disease comes and goes in cycles.  It will probably get worse before it gets better.  And I have faith that the vasculitis WILL improve.

One of the most frustrating things about having lupus is accepting the cycles of feeling well and feeling ill.  I’ve had this diagnosis since 1992 and I still manage to get all pissy when I develop flares.  I get all snug and cozy when I get lucky enough to enjoy a pain-free, rash-free stretch of time.  Heck, I even start to feel …. dare I say it …. relatively normal!  And then I get blindsided when my autoimmune system starts to go haywire.  Again.  And again.

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For now, I will start back up chanting my “coping with lupus mantra” …..

I will stay out of the sun.

I will wear long sleeves.

I will not get overheated.

I will try to avoid stress.  (However, if anybody reading this knows a sure-fire way HOW to do this, please get in touch.)

I will tell myself that even though I may not look the way I want to, I’m still the same person on the inside.

I will rely on the strength of my faith, family and friends.

I will continue to pray for a cure.

I will tell myself that I am not my disease.

I will remember that living with lupus is a circle game.

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A Christmas Wish

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A wish for you, dear Readers, for this Christmas and New Year.  Borrowed from John Denver with thanks and hope for a wonderful holiday … from my heart to yours.

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The season is upon us now                                                

A time for gifts and giving.

And as the year draws to its close

I think about my living.

The Christmas time when I was young.

The magic and the wonder.

The colors dull and candles dim

And dark my standing under.

Oh little Angel shining Light

You’ve set my soul to dreaming.

You’ve given back my joy in life

And filled me with true meaning.

A Savior King was born that day.

A baby just like you were.

And as the Magi came with gifts

I come with my gift too.

That peace on earth fills up your time

And brotherhood surrounds you.

That you may know the warmth of love

And wrap it all around you.

It’s just a wish, a dream I’m told

From days when I was young.

Merry Christmas to all of you.

Merry Christmas, everyone.

A Small Miracle

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At long last, my insurance carrier approved my IVIG treatments for lupus, retroactive from September last year through June 2010.

I feel like I won the lottery …  or at the very least, was granted a small miracle.  FL-BLV-00-012-09P~Believe-in-Miracles-Posters

The road to these much-needed and long-overdue infusions has been long and crazy!  Last month I was preparing for the formal second level appeal with my insurance carrier … the main reason I barely posted anything.  My illness was flaring and I was a certifiable mental case.

But I held steadfast to the belief that things just had to get better.

Next thing I know, a big whopping envelope from the insurance company was in my mailbox … a 200+ page collection of papers  regarding my treatment history, research documents about cutaneous lupus vasculitis studies, prior appeal letters from my doctors requesting approval for IVIG, etc.  A final (and formal) appeal teleconference hearing was scheduled on June 1st at 11:00 am.  In attendance would be the insurance case manager, a panel of physician Medical Directors that specialized in rheumatology, my own rheumatologist … and me.

The teleconference seemed to be over before it started.  The panel asked for my input and I blithered something senseless about “needing these treatments.”  The panel asked my rheumatologist an array of questions, which I didn’t really understand.  I didn’t understand my doctor’s answers, either.  Something about B cells and hyperclonality and other things I never heard of.  I work in the medical field and this was way over my head … which was pretty scary. My doctor was amazing and spoke with great conviction.  When the panel asked him if he was aware of additional peer reviewed clinical trials with a larger patient population of refractory SSA antibody positive individuals with cutaneous small vessel vasculitis, he politely told them that my circumstance was quite unusual.  Broad based clinical trials would be difficult to conduct because there just are not that many people with the condition I have.  He said that in his 30 years of medical research, he has not seen a case as severe as mine.

If nothing else, I knew he gave this his best shot!

Of course, I was mentally prepared for the appeal to be denied.  And I was prepared to file a complaint to the state board of insurers.  If they upheld the insurance denial, my last option would be to contact the pharmaceutical company that makes IVIG and ask them if they’d let me have it on a “compassionate care” basis.

You can imagine my surprise when the following evening my phone rang at 9:00 pm.  It was the case manager from my insurance carrier calling.  She thought I’d want to know that after the teleconference appeal, the panel assigned to my case approved my request to receive IVIG for 12 months!

Sometimes persistence and a bad-ass attitude gets the job done!

Sometimes persistence and a bad-ass attitude gets the job done!

Most of the credit for this decision goes to Dr. Terry Moore, my rheumatologist … and all-around Bad-Ass Doctor.

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I wish I could tell you I feel wonderful.  Physically, my condition is deteriorating.  I can’t really spend any time outside because it’s too hot and too sunny.  Being stuck in my house is depressing at times.  I  started an art project, and took up knitting, and found a couple good books to read, but nothing takes the place of having the freedom to go outside and take in the sunshine.  With a little luck, I’ll be well enough to travel to Wisconsin next month for a long overdue visit with my son and daughter-in-law.  There may be time for a visit to the sand dune beach  – in the late afternoon, of course.

Last week I had my first infusion.  Every three weeks I get to go to the cancer center, get hooked up with a needle and a bag a medicine, and spend the day in a chair.  Thrilling it ain’t.  But I’m grateful for the only treatment out there that will fight off the lupus attacks that have ravaged my body.

I have lots of hope, however.  And I’m thankful for this little miracle … even if it comes with a $2,000 deductible!

Prayers for Sarah Jane

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I’m sharing this story in the hope you will read it and find room in your heart to pray for a special little girl that needs a lot of love and support right now.

My son has a half-sister, Sarah Jane.  She is eight years old with blond hair and the longest lashes in the world that frame her pretty blue eyes.  As you will see, Sarah has an amazing smile.  She’s a sweetheart and our family loves her more than words can say.

Matt's sister Sarah Jane, age 2

Matt's sister Sarah Jane, age 2

Sarah was diagnosed with epilepsy at a very early age, after what seemed like an unrelenting round of seizures.  Despite the medication side effects and slight developmental delays, Sarah loved to play and dance and sing … all the things that little girls do.  Just before her 3rd birthday, Sarah had a very bad seizure that lasted over 5 hours.  The doctors put her in a drug-induced coma in the hope that this seizure would stop and her brain would have time to rest.

When she was physically stable long enough to wake up, Sarah was blind and could not smile.  She now had cerebral palsy.  She could not swallow and required tube feedings.  She could no longer dance or sing.

Sarah on her 3rd birthday with her mom and dad

Sarah on her 3rd birthday with her mom and dad

In 2004, we celebrated Sarah’s 3rd birthday in the pediatric intensive care unit at the hospital.  She was in a coma and intubated at the time, so we sang Happy Birthday in hushed voices at her bedside.  The day I took this picture, I held steadfast to the hope that she would have many more birthdays to celebrate, despite overwhelming odds to the contrary.

And she did.

You can read Sarah’s story here.

Sarah can’t dance, but she can ride a special bike.  She can see much better now, thanks to eye surgery and glasses.  Sarah loves to cuddle with her big brother  Matthew.  She adores music and loves to sing and laugh.  She is truly a heaven sent gift for those of us who are blessed to know her.

Napping with big brother Matt

Napping with big brother Matt

Best of all, Sarah got her smile back!

Sarah with her mom, Sandy

Sarah with her mom, Sandy

This year, just before her 8th birthday, Sarah had problems breathing and had to return to the hospital.  She has developed pneumonia and other complications that required her being placed on an oscillating ventilator to help her breathe and give her body the necessary time and energy to rest and recover.  The doctors have her on a lot of different medications.  Because she’s on a breathing machine, she has been given medication to keep her asleep and comfortable.

Sarah had her 8th birthday in the PICU.  There were balloons and signs and Happy Birthday songs for Sarah, but she wasn’t awake to hear or see the celebration.  Her big brother Matt, little brother Graham, sister-in-law Laura and Aunt Sue (me) spent Easter Sunday with her, taking turns visiting, holding her hand, and praying for a speedy recovery. The road back home for Sarah will be a long one … many weeks to come of waiting, watching, and praying.

I’m asking for prayers and good wishes for all of you who read this post.  I believe in the power of prayer and positive thinking.  Please keep Sarah and her family in your thoughts and hearts.  Pray for the amazing doctors and medical staff that are treating Sarah 24/7.  Their care and compassion is miraculous.

Thank you for taking the time to read about Sarah.

Once again, we’re waiting for Sarah’s smile to return.

Santa Statistics

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science-of-santa-academic-santa-8x10I’m guessing that many people already know about this important data, but it’s worth repeating during the holiday season.  I’m also determined not to write about anything related to lupus, disease or sadness between now and the end of the year.  I hope I can hold out that long!

Anyway ….

No known species of reindeer can fly.  BUT there are 300,000 species of living organisms yet to be classified, and while most of these are insects and germs, this does not COMPLETELY rule out flying reindeer which only Santa has ever seen.

There are 2 billion children (persons under 18) in the world.  But since Santa doesn’t (appear) to handle the Muslim, Hindu, Jewish and Buddhist children, that reduces the workload to 15% of the total – 378 million according to Population Reference Bureau.

At an average census rate of 3.5 children per household, that’s 91.8 million homes.  One presumes there’s at least one good child in each.

Santa has 31 hours of Christmas to work with, thanks to the different time zones and the rotation of the earth, assuming he travels east to west (which seems logical).  This works out to 822.6 visits per second.

This is to say that for each Christian household with good children, Santa has 1/1000th of a second to park, hop out of the sleigh, jump down the chimney, fill the stockings, distribute the remaining presents under the tree, eat whatever snacks have been left, get back up the chimney, get back into the sleigh and move on to the next house.  Wheww!

Assuming that each of these 91.8 million stops are evenly distributed around the earth, we are now talking about .78 miles per household, a total trip of 75.5 million miles, not counting stops to do what most of us must do at least once every 31 hours, plus feeding and etc.

That means Santa’s sleigh is moving at 650 miles per second, 3000 times the speed of sound.

Assuming each child gets nothing more than a medium-sized Lego set weighing 2 pounds, the sleigh is carrying 321,300 tons, not counting Santa.  On land, conventional reindeer can pull no more than 300 pounds.  This increases the payload, not counting the weight of the sleigh — to 353,430 TONS, which is roughly four times the weight of the ocean liner, Queen Elizabeth.

353,000 tons traveling at 650 miles per second creates enormous air resistance.  This will heat the reindeer up in the same fashion as spacecraft re-entering the earth’s atmosphere.  The lead pair of reindeer will absorb 14.3 QUINTILLION joules of energy.  Per second.  Each.

In short, the lead reindeer will burst into flame almost instantaneously, exposing the reindeer behind them, and create deafening sonic booms in their wake.  The entire reindeer team will be vaporized within 4.26 thousandths of a second.

Santa, meanwhile, will be subjected to centrifugal forces 17,500.06 times greater than gravity.  A 250-pound Santa would be pinned to the back of his sleigh by 4,315,015 pounds of force.

In conclusion – If Santa ever DID deliver presents on Christmas Eve, he’s dead now.

Wishing you all a very Merry Crisp-mas!

Redefining Normal

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Life is not a static experience.  Change is inevitable and part of the human condition.  If we’re lucky, our lives are enriched with events and experiences that give us the opportunity to learn, love, and live.  We have  children.  We have friends and lovers.  We work and go to school.  We get married and divorced.  Whether we’re rich, poor, young or old, we develop life patterns that we call “normal”  …. the events in life that are, for the most part, typical and expected.

I had all those things in my life.  School, family, husband, child, job, money, divorce, no money, aging parents, bills, sunny beaches, friends, music.  Then in 1992, normal changed.   And believe me, having a chronic incurable illness was certainly not my definition of normal.

Lupus forces me to constantly re-define normal all the time instead of once in a while.

So while balancing the constant changes in our lives, we try to manage our disease, too.  And if our disease does not respond to traditional or alternative therapies, most of us try to find inner peace and acceptance.  Many of us can’t.  Occasionally luck and divine intervention plays a part in remission or healing. Regardless of all the obstacles and limitations, normal constantly changes.  I honestly never know day to day if I’ll feel well.  I may wake up feeling physically fine … or not.  I may be able to run down the stairs, or have to hold on to the railings one step at a time.  I may be exhausted at lunchtime and have to force myself at work to accomplish tasks but sometimes have the energy to sail through day.  I might feel strong enough to run errands after work but often can’t get out of a chair.  It’s a miracle I have any friends left because I frequently have to cancel get-togethers or parties. I’ve learned to lower my expectations.

Lupus often flares up with little or no warning. It’s incideous.  Just like cancer, diabetes, mental illness, AIDS and epilepsy (to name a few), lupus worms itself into our bodies and attacks.  So we fight.  We take medication and see doctors.  We seek inspiration and courage.  We pray for miracles.

We re-define normal every day, every month, and every year of our life.  It’s not fun.

This holiday weekend I had the good fortune to experience what I used to call “normal.”  I usually refer to stuff like this as BL (before lupus).  I spent Saturday with a dear friend.  We took a long drive along the river road between Missouri and Illinois, enjoying the boats on the water and the beautiful white cliffs on the Illinois side.  We shopped, had lunch, and found a favorite little “produce ranch” on the riverbank that sells the best home made pies in the Midwest.  The following day I went to church and sung with a choir I’ve been in for over 20 years.  After that, a few of us went out for brunch.  And after that I spent a lazy afternoon with my best friend and her mom.  We cooked a traditional St. Louis Labor Day BBQ : pork steaks with Mauls BBQ Sauce.  We drank wine and laughed a lot.  On Monday, I met up with my 2 brothers and other family members for dinner.  It was wonderful.  And I didn’t take any of it for granted.  I felt like I had lupus bonus points!

I was grateful this weekend for the gift of all those experiences.  Usually, I don’t have enough stamina.  Usually, I have too much joint pain, or a headache, vertigo, and the jitters that accompany prednisone.  Usually, I’m just too tired, because doing laundry, cleaning the house and shopping for groceries are enormous tasks that take all the wind out of my sails.

One day at a time?  That works for me!