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. 
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!
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!
May is Lupus Awareness Month. May 10 is World Lupus Day
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A few days ago, I started experiencing the all-too-familiar signs of a lupus flare ramping up. My joints started aching, and I started having hives around my hairline and neck. Sure enough, I woke up with my skin feeling like it was sunburned. When I got out of bed, I noticed my thighs were covered with red blotches. My back and arms were red and lumpy. My feet and shins had new vasculitis lesions. I was covered in sweat and running a low grade fever.
There’s nothing I can do about this flare. I just have to deal with it and hope it doesn’t get worse like last year. I’ve blown through all the pharmaceutical options to treat lupus. My insurance carrier is reviewing a “second level” appeal from my doctor for IVIG therapy. It is the only therapy that works for me. If this second appeal is denied, I will be out of luck.
Did you know that in the last 50 years, there have been no new drugs developed specifically to fight lupus? Currently, the only drugs on the market used to specifically treat lupus are Plaquenil, prednisone and aspirin. How pathetic is that? Instead, doctors have had to use “off label” medications like chemotherapy and other immune suppressors to fight lupus. All have toxic side effects. Sometimes I don’t know if the drugs are worse than the disease itself.
The video below is entitled Faces of Lupus. Pray for a cure.
It all started when I began thinking about the strange randomness of the single shoe found on roadsides. How did it get there? Was it thrown out on purpose or just carelessly tossed aside? Who knows? And who cares?
That’s when I decided to Google “random shoes.” I found photos of this tree in Hawthorne, Nevada.
- Shoes in Tree
Apparently the custom is to sling your shoes up in the tree after you’ve experienced a certain rite of passage. Ahem. The tree is dead, by the way, perhaps by way of stinky feet. And maybe the tire was a tribute to ah, uh … whatever.
As a good friend told me this evening, I manage tough situations by “visiting” them from time to time; I don’t stick around for long stretches of despair. I never thought of it that way, but she’s right. I don’t like to wallow.
Life’s been a little harder than usual lately. My heart is tethered to people I love but can’t seem to help. I’m frustrated about personal situations I cannot seem to change. And of course there’s health-related challenges. Lupus crap is always just below the surface of everything, waiting to get worse.
But today I’m giving thanks for the little things in life.
Sometimes the little big things are enough to keep me going.
Such as …….
A perfect day at the beach
* Fresh 600-count sheets on my bed.
* New socks.
* YouTube crazy cat videos.
* Silly phone messages from my son.
* Tickets to see James Taylor next month.
* Taking stuff to the recycling center.
* Reading a great book.
* Somebody else cooking dinner.
* A new shower head that feels like a spa experience.
* Putting all the groceries away, the laundry folded, and a clean house.
* Getting a hug from a favorite three-year-old, who just said “I love you.”
* A new bar of shea butter soap.
* Eight hours of sleep.
spring poppies
What are the little big things in your life?
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
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
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
Best of all, Sarah got her smile back!
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.
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
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!
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 
for 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!
