Tag Archives: IVIG

Living In Harmony

Standard

Here I am, living the good life as my sister’s housekeeper while waiting for my social security disability checks.  I’ve read a veritable mountain of books this summer.  The house is clean, the laundry is folded, the plants are watered (most of the time) and the stress factor is manageable.  Still licking my wounds, so to speak.  Still dealing with lupus.  Still trotting off to the hospital every three weeks for IVIG treatment.  It could be worse.

However, I need to do something productive, creative and profitable.  So I decided to design and make jewelry.  I had the basic tools and materials, as I toyed with the idea a couple years back.  At the time, I made bracelets and earrings for Christmas gifts.

Living without a paycheck is a great motivator for thinking outside the box.  I have plenty of skill sets in a traditional work setting.  But my life is no longer what I consider “traditional.”  So after a lot of soul searching, I decided to launch my little jewelry making enterprise.

My business is called Harmony Beads.  “Jewelry in tune with every occasion.”

I know absolutely NOTHING about the jewelry-making business, but I’m a quick learner.  So far, I’ve managed to enter into a giant art fair in November, sell a few pieces to some friends, and sign up for a wire wrapping course at the university.  My sister, bless her heart, is hosting a jewelry premier party in October.  We’re serving wine and I hope everyone drinks and spends money.

In the meantime, I spend most of my time working at the dining room table where the light is good. I bought a stronger pair of reading glasses for obvious reasons.  I love making jewelry. The design inspirations are endless.  It fulfills my need for creativity.  The final products are tangible and satisfying without any calories.  There’s something fantastic about making something and being pleased with the results of your creation.  It’s akin to the joy having children without the hassle of raising them.

My cat Tigger usually keeps me company.  He likes to lay on paper and plastic things.  He also waits around to chase the occasional “flying bead” when I knock something over.  Last Saturday night he hit the jackpot when an entire tray of pearls spilled all over the floor.

I’ve managed to stay out of the pool halls and biker bars.  So far.

If this little enterprise takes off and does well, I’ll be a happy camper.

Mixed Blessings

Standard

My Social Security Disability application was approved.  I’ve been told that only 30% of  first-time requests are granted disability payments.  I’m obviously relieved and grateful to qualify for social security.  My initial reaction to all this news was something like … “Great, I’m approved for disability!”;  followed by … “Crap, I’m approved for disability!”

Millions of people live with an invisible illness, like lupus.  Many have full-time jobs.  I’ve had lupus since 1992 and worked until this spring.   And that’s a weird situation for me.  It is challenging to accept the realization that I have serious health issues.  In my head and heart I’m the same person I was four months ago.  I certainly look the same, except for a 30 pound weight loss.  My laboratory studies, on the other hand, are seriously messed up. And every three weeks I’m in the hospital for immunoglobulin infusions because my doctor believes that aside from a very unlikely stem cell transplant, IVIG is my last treatment option.  But to look at me, I’m just your typical middle aged white woman.

Regardless of what happens in our life, living with mixed blessings is part of the package.  I’m lucky enough to qualify for social security.  So many people are less fortunate and have to juggle unemployment, disability, and poverty.  I’m one of the lucky ones that can afford health insurance and have a supportive family.

My life is certainly less stressful.  I take care of most of the household chores and errand-running.  My days are filled with tasks like folding laundry, watering the plants, making jewelry, preparing dinner, and writing this blog.  I promised my sister that I would be her bitch around the house.  So far, it’s working.

It would be wonderful if my lupus went into spontaneous remission.  It would be wonderful if I had the stamina to work again.  In the meantime, I’m counting my mixed blessings.

A Small Miracle

Standard

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.

##########

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!

Lupus Warrior

Standard

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.

That Wasn’t So Scary

Standard

$15,000 bucks a pop

I’ve completed two IVIG infusions.  On my first visit to St. Louis University’s Cancer Center, I was pretty scared but did my best to not freak out.  Initially the process was surreal, driving in the rain during rush hour, trying to find the dang place, getting lost inside the hospital … my feet felt like concrete and I couldn’t walk very fast. The infusion center actually looked like a nice day-spa, if you ignore the IV polls.  Nice pictures on the wall, gobs of magazines, TV’s at each comfy, oversized lounge chair, warm blankets to cuddle with, side-tables with cup holders … low lighting and soft laughter from the nurses who fluttered about.  On closer inspection, I noticed the emesis trays at each table, a row of  baseball hats to wear if the need arises, and catalogues for wigs, scarves and hats.  Serious scary stuff.  My nurses, Angela and Mary, were so very kind and reassuring.  They were also happy to see a patient with veins that haven’t collapsed yet and had no trouble finding a good place for the IV port in my hand.  I was all ready to rock and roll until my nurse told me I’d have to wait about an hour before starting.  Whey I asked why she said with a smile, “This stuff is really expensive so until I see the whites of your eyes and the needle in your vein, we don’t prepare the medicine.” I don’t blame her.

I was prepared, or so I thought, for any possible scenario, except for what I experienced.  I was zonked out on Benadryl and could hardly stay awake!  I suppose that was a good thing, as I eventually drifted into a fuzzy nap for a couple hours, interrupted only by the little infuse-o-meter beeping every 30 minutes.  Occasionally there’d be a text message on my phone from my sister, a friend, and my boss.

Around noontime the place was completely booked up with patients young and old.  Some had PICC lines, some had portable infusion packs.  I saw bald heads, wigs, hats and full heads of hair.  Many folks had headphones and were either listening to music or watching television.  Visitors were nearby and they mostly read or shuffled in and out.  There was a big table with a jigsaw puzzle that people worked on.  A dining room offered tea, coffee, soft drinks and snacks.

Some patients were very chatty and others, like me, were not.  Ever the introvert, I made some small talk with an elderly patient next to me when she couldn’t figure how to unplug her IV pole.  I was impressed with the silent acceptance and respectful vibe in the room.  Several patients were obviously quite ill and uncomfortable.  One got sick in her chair.  Some people were there for just an hour or so and a few, including me, were there all day.   A friend came by with lunch in the afternoon and hung out with me until it was time to leave.

I was pretty tired that day and the day after.  At times, it was a challenge to stay away at work the next day.  During the second infusion I had a little trouble with getting too cold, so the infusion rate was slowed and that, along with a couple extra blankets, solved the problem.

So for those of you out there potentially facing a similar experience, I’m here to tell you that it’s not as bad as you might think.

I don’t have a bald head.  I don’t use a wheelchair.  I don’t walk with an abnormal gait.  I’m not a celebrity or a famous author.  I don’t stand out in a crowd of people.   I’m just a regular person trying to deal with an absurd, incurable, illness that doesn’t look sick.  And I’m writing because you need to know that the world is full of people just like me.  My goal is to bring understanding, humor, levity, comfort and hope to anybody that needs or loves someone who is invisibly disabled.  Sometimes, it’s not so scary.