Category Archives: blessing

Mixed Blessings

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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.

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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.

The Up Side of Lupus

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Having lupus doesn’t mean I’m out of options to live a full life … at least most of the time.   And there are plenty of things I don’t have to worry about.

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1.  Even though all my siblings and both  parents had some form of skin cancer, I most likely will not get it.  My skin is fair and I totally avoid the sun.

2.  I’ll never have a skiing accident because sun, glare, and cold keeps me off the slopes.  However, I’ll join you for a drink in the lodge any time.

3.  Don’t have to cut the grass in the summer because it’s too hot.  Then again, I live in a townhouse anyway and somebody else deals with the yard.

4.  I get to indulge in at least 8 hours of sleep a day.  Plus naps.  Honestly, if I couldn’t get this much sleep, I’d be a walking zombie.

5.  If I can’t remember something, I blame it on lupus fog.  It’s more interesting than just getting old and forgetful, don’t you think?

6.  Do I have to schlep tons of groceries from the store, to the car, to the garage into the house? Not if I’m not up for that.  Delivery when the weather is fugly is totally cool and worth every penny.

7.  Having an autoimmune disorder can work to your advantage during the holiday shopping season.  Given all the immune suppressing drugs I’m on, I’ve become a germ magnet.  No Target.  No malls.  No Home Depot.  Shopping on line is not only heavenly, it keeps me in the Christmas spirit.  No more parking lot fury over the idiot that took my spot!

8.  On those days or nights when I’m staying home because I’m too tired to go anywhere, I usually remember the consequences of pushing too much and not being able to walk the next day.  Given the choice, hanging around the house doesn’t seem so bad.

9.  Long sleeves!  At the risk of sounding ridiculous, long sleeves cover up not only middle age arms, but also bruises and vascular rashes.  And clothes with a UV rating of 50+ do a super job of protecting the skin!

10.  Last year I tinted my car windows.  I can drive anywhere without worrying about the sun.  Plus my car stays cooler in the summer and warmer in the winter.  If not for lupus I probably wouldn’t have my car pimped out so nicely.

11.  This may sound strange, but meeting other “lupies” on-line or in-person is good for the soul.  There is strength in numbers and knowing you’re not alone is always a comfort.

12.  I’m fortunate to have a local Lupus Foundation of America branch in the city where I live.  Any local chapter of the LFA can be a great resource for living well with lupus.

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Sure, having lupus is a drag.  But there’s an up side to everything.  You just have to look for it.

 

 

 

Autumn Blessings

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Despite all the crazy and sometimes crappy things that happen, I am able to count my blessings.  The month of November is a perfect time to appreciate all things great and small.

So in no particular order, I’m thankful for  …

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crisp, clear blue skies and bright autumn colors

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cuddle breaks after raking the yard

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a "spooky" Buzz Lightyear

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wine making grapes

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apples for pie

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Queen Anne's Lace

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watching a waterfall

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long naps

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gentle rain on the roof

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fresh veggies from the garden

What are you thankful for?

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.

happy birthday to me

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LupusRanting Turns 1 This Month

LupusRanting Turns 1 This Month

A year ago this month LupusRanting was born into the blogosphere.  It’s been a wonderful first year.

Like many people who have blogs, I love to write.  Next to singing, it’s one of my top passions in life.  I was completely flabergasted when folks began to stop by and comment on my posts.  Thank you for taking the time to read and write me.  You make my day!   For those of you who have added me to your blogroll … it has been an honor!

If I knew how to make badges, I’d present them to a number of my fellow bloggers who have always taken the time to be supportive and write words of encouragement and just crazy nice stuff.  Here’s to (in no particular order) Teeni, Pamajama, Speedcat, TGFTG, Joan,  Allison and Trisha … just to name a few. You never fail to make me laugh!

To all the spammers who never get through Askimet, just give it up.  You are so locked out!

To my family and friends … notably Lisa and Judy … you are the peanut butter to my jelly.  Thanks for always being there, in the real world and in my blog world too!

For all of my fellow lupies who stop by and visit this site, know that your stories and courage inspire me to keep writing about how to cope and live well with autoimmune disease.  Stay strong and keep fighting!

Enough said.
Where’s the cake???

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!