Tag Archives: infusion

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.

Safe Harbour

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safeharborWhen you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

So Here’s The Thing …

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Where have I been for the last month?  Did not fall off a cliff.  Was not deported.  There is a story to tell and on the Lame Story Thermometer it’s quite impressive.  So here’s the thing …..

I could tell you I’ve been in mourning since Michael Jackson died.  Well, I did watch the memorial service.  And the Jackson 5 movie.   Does that count?

I could also tell you I’ve been very busy painting.  Except  I have not been painting much. But I did think about my current project .  It started out like a sunflower on steroids and LSD but somehow it wandered down the path of extreme butt-face ugliness.  After a coat of white paint to cover up the abstract monstrosity, I began work on what may perhaps be an even an even uglier abstract monstrosity with blues and yellows.   In the meantime, I have a towel flung over the canvas so I don’t have to look at it.

KINDA THE LOOK I WAS AIMING FOR

KINDA THE LOOK I WAS AIMING FOR

My sister recently had heart surgery to replace her aortic valve.  She was born with a bicuspid valve; an inherited swimming-in-the-shallow-water genetic fluke.  So now she has a bovine (moooooo) valve and will soon be able to chase grandchildren around the yard.  Last week I did spend most of my spare time at the hospital.  Her doctor noted that since this is inherited, her children and siblings should get a complete medical workup.  I’ll put that on my list of things to do.  Later.  Today she was discharged from the hospital and is happy to be resting at home.  Her short-term goal in life at the moment is to be well enough to go to the American Idol concert at the end of August.  I’ll be happy if we score a great handicap parking space.  Ya’ll think the sympathy factor would get us a backstage pass to meet Adam?

BAD VALVE

BAD VALVE

GOOD VALVE

GOOD VALVE

Last month we relocated our medical office to a new hospital campus.  Moving is hard.  So is packing.  Packing AND moving totally sucks.  But I’m a stoic individual who didn’t want to look like a complete middle-aged chicken shit wuss with lupus who can’t lift heavy boxes.  I usually save that approach for non work-related catastrophes.  However, I’m an idiot and I did overdue things.  Now my neck feels as supple as a redwood tree.  Maybe I will join the gym after all.  On second thought …

ME CARRYING HEAVY BOXES WEARING SANDALS??

ME CARRYING HEAVY BOXES WEARING SANDALS??

Also last month I went to visit my son and daughter-in-law.  Hung around the farm they live on;  spent time at the sand beach, went to a movie and attended an open house where Matt was in charge of a wild edible plants exhibit.  Nothing quite like tasting garlic mustard pesto and cattail hearts.  However, I did have a super time.  And a little FYI for you moviegoers out there.  Do not watch the new Sasha Baron Kohen movie “Bruno”.  Quite the bizzare experience watching full frontal male nudity and a swinger club party on the big screen with your family.  I wanted to disappear like the prophesied Rapture in the bible.  Turn your head and I’m gone in a flash.

PLEASE GOD GET ME OUTTA HERE

PLEASE GOD GET ME OUTTA HERE

On the lupus side of my life, I’ve had three infusions so far.  I get them every three weeks and am grateful to have a course of treatment that works like magic.  Mind you, IVIG is not a cure for lupus.  I’m in the very small minority of people with refractory response to conventional medications.  The last week or so has been hectic and my body has been telling me to slow down, stay out of the sun and heat and rest.  I did try to listen and managed to cut back on cleaning, etc.  As a result, the house is a mess and the laundry is piling up.  But that’s life with lupus.

Ego venit ego vigilo ego confero. I came, I saw, I wrote.

It’s good to be back.

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!

World Lupus Day

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May is Lupus Awareness Month.  May 10 is World Lupus Dayworldlupusday.

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.

That Wasn’t So Scary

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$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.

Hospital Antics

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Is it too much to ask for a little diversion when undergoing a 6-hour infusion in the hospital?

Next Thursday I’ll have my first IVIG infusion.  Need get to the oncology/hematology department at the butt crack of dawn.   Hospital instructions included  a veritable cornucopia of random advice: bring a blanket/or jacket in case I get chilled; bring my own lunch and they’ll store it in their fridge; bring headphones if I want to watch the bedside TV; drink a lot of water before arriving so they can easily find a big fat vein to stick; wear socks.

The last thing I want to do is go to the hospital.  Under any circumstance.   Hospitals are full of doctors, nurses and patients.  Everybody washes their hands, right?.  Right.  The sick people infect the visitors.  The visitors subsequently get sick and wind up in the hospital.  It’s a vicious cycle.  In addition, my immune system is filled with deranged T-cells that can’t tell an antibody from an antigen.

Unfortunately for me, I can’t avoid the hospital this time.  I have lost pharmaceutical control over my immune system … translation … lots of money and time for lupus medication that did not work.   So I’m stuck, pardon the pun.  Ever the optimist that we can make lemons out of lemonade (pardon the slip), I decided to make a fun list of things to do while a needle is stuck in my arm for six hours.  In no particular order, here they are.

1.     Take cell phone pictures of the arm in question.  Send them to friends.  Or not.

2.     Zone out in the Happy Place part of the brain that copes with stress. Take drugs if that doesn’t help.

3.     Write blog entries

4.     Organize and moderate a patient panel to discuss healthcare reform.  Will keep you updated.  Or maybe take over the hospital.  “Death to the insurance carriers!!”

5.     Working with my jewelry kit, design and make bracelets.

6.     Call for pizza delivery because a cold boring sandwich is just a cold boring sandwich.

7.     Hire a stripper.  Or convince someone to do it for free.

8.     Learn to juggle with one hand.  Just don’t anybody sit too close or you’ll get bonked on the head.

9.     Read a book about coping with Lupus. Oops! I already threw it out the window last night.

As you can see, this list isn’t very long.  And yes, this list isn’t very good, either.  So send in your suggestions!  Drop me a line!