Category Archives: FAITH

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.

Spring Break 2009

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A little heaven on earth ...

Last  week I drove to Wisconsin for a visit with my son and daughter-in-law.  I treasure these times when we can spend more than a couple days together.

Laura is currently enrolled in a graduate program at University of Wisconsin-Madison.  She’s majoring in Agro-Ecology, They found a wonderful place to live while she’s enrolled ….  a certified organic farm in Cottage Grove, Wisconsin called West Star Farm.  The farm itself is busy getting ready for springtime planting and the greenhouses are buzzing with activity!  The photo above is the main barn at West Star, and obviously was taken in the summer.  I got to meet Amy, the farm’s full-time manager, and Bev, who is also a student that lives on the farm.  I  met several roosters and hens, lovely birds that are senior citizens.  They don’t lay many eggs, but are beautiful to watch … two sisters and their RIC (Rooster In Charge), a dapper fellow who likes to crow alot.    I’m a city girl, so spending time on this amazing farm is quite a thrill for me.  And the night sky!  The heavens were filled with so many stars!  It was beautiful to sit outside at night.

Yesterday, my son gave me a tour of the work he’s doing for the Sand County Foundation.  Matt’s an arborist who specializes in ecologic land restoration and preservation.  He’s currently working with the Aldo Leopold Foundation.

Aldo Leopold (1887-1948) father of wildlife ecology

Aldo Leopold (1887-1948) father of wildlife ecology

Matthew’s field studies are fascinating.  Maybe it’s the mother in me that’s a little nuts, but I’m more than proud of the work that Matt and Laura are involved with.

During my visit we spent time cooking and baking … tried out a great biscotti recipe.  Laura and I went to a yarn shop and spent about an hour checking out wool, organic cotton, needles, etc.  Then we went home and started on our new projects.  We’re both novice knitters, so it was fun to have that to share.  Matt and I went shopping for leather boots for his work and I treated him to a big screen movie …. something he hasn’t indulged in for almost two years!  Unfortunately, it was a stupid, long, and ridiculous film but we had a good time anyway making fun of it and laughing afterwards.  It certainly made our Top Ten List of really bad movies!pict0038

On the last day of my spring break we went to Bayview, Wisconsin and had dinner at one of our favorite places, Cafe Lu Lu.  Laura’s brother and Matt’s former employer and mentor joined us  cafe-exterior3for a great evening .  Lots of stories, great food, good company and a full serving of laughter and general silliness!  These are the events that nourish my soul.  There is nothing more wonderful than spending time with the people you love and respect.  It was a perfect blend of family and friends, old and new.  I am truly blessed!

As I drove home this afternoon, I had already started missing my boy.  But he will be home for Easter and that will be upon us sooner than I know.  Leaving Wisconsin, the air was warm and full of promise.  As I drove south, the fields along the highway started greening up and coming home I discovered springtime had already started with the tulip trees and daffodils blooming.  Even the forsythia was in high gear!

I’m so ready for spring and flowers!

The 5 Question Interview

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Dear, sweet Joan over at Whatever I Think recently gave me five questions to answer.  Thanks Joan!  I love to be interviewed.  And some of these were hard questions!  Thank God I’m not getting graded on this  🙂

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1.  We know you have had lupus for a long time, yet you still manage to stay strong.  How have you managed to keep up the fight against such a disease?

Sometimes I honestly don’t know why I haven’t lost my sanity.  I have a wonderful support system.  That helps a lot.   Mostly it’s because I have hope for a cure, and faith to keep on believing … as in stubborn.  I’ve also learned (the hard way) how to take care of myself and understand my limitations and strengths.  For those of us with lupus, or any chronic incurable disease, research and medicine has enabled us to live  fairly normal lives.  50 years ago, I probably would have died from some complication of lupus.  A sense of humor always helps.  And a good therapist!

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2.  You like to cook.  What is your signature dish?  (I sound like Gordon Ramsey.)  In other words, what does your son say is the best dish you cook?

Gordon Ramsey would chase me out of his kitchen!  My son, on the other hand, is less critical.  Actually, he eats just about anything.  I make pretty good chili.  At least nobody’s has gotten sick after eating it!

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3.  If you had to pick a reality show to be on what would it be and why?

Wow!  How cool would THAT be!!!  First thing that came to mind would be X-Treme Home Makeover – Home Edition.  A dream home would be fantastic.  I could have all the windows UVA/UVB treated, a laundry room off the kitchen, temperature controlled screened in porch … a veritable Lupus Survivor paradise!

Ya'll stop by for a visit!

Ya'll stop by for a visit!


However, if they’re recruiting for Ghost Hunters, count me in!  🙂

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4.  You are an X-Files fan.  Do you believe there are sentient beings (besides us) somewhere in the universe?

I would like to think there are.  The universe is so vast, it’s seems a bit naive to assume that we’re the only evolved life form inhabiting it.  And whoever else might be “out there” I hope they’re peaceful and intelligent!

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5.  Singing is very important to you.  What type of music do you enjoy the most and who is your favorite singer?

I’m pretty much a classic rock fan.  Having said that, I also have a broad range of musical tastes, from Chopin to Steely Dan to Lyle Lovett, to Gershwin to Coldplay, Bonnie Raitt, CSNY, Winston Marcellas, Bela Fleck and Nickel Creek. And that’s just for starters.

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I honestly can’t choose just ONE.

As for singers, there are thousands of great vocalists that never make the big time.  They’re in our citys, our nightclubs and choruses.  They sing at church and do freelance pickup studio work.  The amount of talent out there is staggering.  As a vocalist, a guitarist and a small-time producer, the singing talent that has influenced me throughout my life are from this group of fine musicians.  They are not famous but they inspired me.  Their music is on the sideline of their lives because they have to pay the bills.  But their talent is honest and true.  So go out there and support your local musicians!  Go to their gigs and buy their CD’s.

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If you would like ME to interview YOU, here’s the  drill:

1.     Leave me a comment saying “interview me.”

2.     I will email you five questions.

3.     You will answer the questions on your blog.

Thanks for taking the time to read my interview!!!

Lupus Warrior

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knight-4I’ve been preparing for a battle.  And I’m now ready to charge full speed into the messy underbelly of the healthcare industry.  I haven’t posted much this month but I’ve been very busy dealing with new health issues.

I’m in the process of writing directly to my insurance carrier, requesting an appeal of their decision that denied treatment for systemic lupus with intravenous immoglobulin (IVIG).  Last year, I had 3 rounds of IVIG with total remission.   This stuff is expensive (about $15,000.00 per infusion), so obviously they don’t want to shell out that kind of money on a regular basis.  Unfortunately for me, this is the only treatment option left.  All other medications have failed.

I’m sick of their bullshit denials.  This means war!

I saw my doctor a few weeks ago.  A new rash  developed on my arms, legs and chest.  It’s red, raised and bumpy on my torso, and flat on my extremities.  It’s actually layered on top of the recurrent SCLE rash that flared up in January.  The January rash was fading somewhat and then this new one took its place.  My doctor told me this new rash is small vessel vasculitis.  Currently it’s affecting my skin but he said it can progress to the kidneys, eyes and brain. I have to watch out for areas of the skin that may ulcerate.  Left untreated the skin could become gangrenous.

Fortunately it’s not summertime … yet.  Hot and humid weather makes this stuff worse.  My clothes cover most of it and even though it’s on my forearms and neck, it’s not so bad.  Makeup covers the hives on my face.  Then again, maybe I’m just used to looking at it.

The rash is everywhere on my body, but this photo pf my leg shows both types of lesions.  Some are red, flat and carpet-like.  It feels like a sunburn and is hot to the touch.

img_03912The vasculitis is small, round and dark … about the size of an eraser head.  It hurts but does not feel like a sunburn.

That’s why I’m fighting.

I’m beginning by writing the insurance company a letter.  I’m sending them photos of my skin like the one you see here, as well as others that are too gross to post.  I’m gathering published data from the National Institute of Health with evidence of  clinical trials of IVIG on patients that have systemic lupus and small vessel vasculitis and have gone into remission.  I’m also contacting the US manufacturers of IVIG.  Parmaceutical companies are interested in working with people who seek unconventional treatment (like one of their products) that has been denied by insurance carriers.  To some people, Michael Moore is a total crackpot.  When it comes to health insurance, you should watch his movie, Sicko.  His illustration of the health industry in the United States is spot on.

I’m not waiting for my kidneys to be destroyed.  I’m not waiting to go blind.  I’m not waiting to have seizures.  Nobody at the insurance company is going to cave in and give me the medical treatment I need.  I’ll have to fight for it.

Bring it on.  I’m ready.

Closer To Fine

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Medical setbacks are commonplace for those of us with chronic autoimmune disorders.  I have lupus and my life is often derailed with flare-ups from this disease.  Lupus affects millions of people.  My story is not unique.

The last couple weeks have been hell for me with a recent flare affecting my skin and the small vessels in my legs.   “Mind over matter” doesn’t work for me when it comes to pain.  I feel disfigured, vunerable and isolated.  Friends and family can be thoughtful and supportive when  lupus attacks, but I don’t expect them to really understand.  I’ve screamed and cried until I could hardly breathe.  I totally avoided going outside.  I chased down a truckload of Xanax with a couple bottles of wine.  I researched all the current criteria for SSI disability and was pissed because I actually qualify.  I spent sleepless nights watching inane movies or trying to read a book.  I called in sick from work and sat in bed for 13 hours.  Every time I looked in the mirror I was disgusted with my entire body.  The phone hardly rang, so I was mad about that.  And when a few brave souls did call to talk, I spewed self-indulgent diatribes of hopeless bullshit at them.  Lately, the glass has not been half full or half empty.  I smashed it on the floor into a thousand tiny pieces.  Literally.  Except it was a plate.

This is what lupus does.  It’s ugly and angry and frustrating and sometimes unrelenting.  This is the nasty underbelly of this chronic, incurable, insatiable disease.  It can attack the brain, the heart, the lungs, the kidneys, the skin, and everything in between and nobody knows why.

How are things now?  I’m able to pull my prednisone-bloated body together and go back to work.   I can write about how I feel.  In the movie A Beautiful Mind , John Nash struggles to ignore the delusional people that haunt him throughout his life.   In my recent flare with lupus, I am trying to ignore the voices of despair and anger in my head.  To that end, I’ve been able to spend some quality time with a handful of people I trust.  With them, I don’t feel so ugly or limited.

I continue to look for sanctuary, or inner peace, or spiritual guidance, or comfort, or whatever you would call it.  Maybe there isn’t a word for what I’m seeking when I feel bad.  I really don’t know.   Somehow, I feel a little better.  Just a little.  People often describe their life journey as a landscape of hills and valleys on a map.  Lupus appears in my mind’s eye as a series of crooked roads going nowhere.  Either way, I’ve had enough of the screaming and angst and sleepless nights.  I don’t want to look at the map right now; the hills and valleys and roads are just too much to deal with.  For  now, I want quiet time without tears and heartache.

There’s a song by Indigo Girls that I like a lot.  Aptly, it’s entitled Closer To Fine. It speaks to how I currently view the battle between my spirit and my disease.

I’m trying to tell you something about  my life

Maybe give me insight between black and white

And the best thing you’ve ever done for me

Is to help me take my life less seriously

It’s only life after all …..

Well darkness has a hunger that’s insatiable

And lightness has a call that’s hard to hear

I wrap my fear around me like a blanket

I sailed my ship of safety till I sank it

I’m crawling on your shores …..

I went to the doctor, I went to the mountains

I looked to the children, I drank from the fountains

There’s more than one answer to these questions

Pointing me in a crooked line

And the less I seek my source for some definitive

The closer I am to fine …..

Finding The Sweet Spot

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It’s that moment when you realize the bowling ball is in the pocket.  It happens when you connect PERFECTLY with the tennis racket, baseball bat, or golf club because you can feel and hear it.  And if you’re a cat, like my Charlie (pictured above), the ultimate sweet spot is purring on a cozy blanket, facing the sunshine, and taking a 3-6 hour nap.  We all look for the sweet spot, wherever it may be.

Today I noticed that life has been rolling along smoothly for almost an entire week.  Having made that assertion,  no doubt I’m pushing my luck for a fun weekend, but what the heck.  I made plans anyway! In addition to keeping up the regular 9-5 workpace, I attended a fabulous black-tie wedding and reception on Saturday (It’s fun to get dressed up now and then!) AND a baby shower on Sunday (My friend Kathy and I went a little overboard at Babies R Us.  Everything was soooo cute!).  I went to a music rehearsal on Monday evening.  I bought groceries, put them away, cleaned the kitchen, took out the trash, and washed three loads of laundry.  No joint pain.  No steroid hot flashes!  I remembered to go to a long-overdue therapy appointment and left without using even one Kleenex!  Yeah baby …  I found The Lupus-Free Sweet Spot.

I like to celebrate the little triumphs in life.  I’m not planning to surf the perfect wave in Maui, or land a back flip on the balance beam.  I don’t have to sing Schubert’s Ave Maria and gracefully slide over the high notes.  I have faith.  Right now, it’s enough to have clear skin and walk without tripping.  That’s sweet enough for me!