The Up Side of Lupus

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

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

a "spooky" Buzz Lightyear

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

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

When 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.

Halloween Butt

The stomach says "NO" but the mouth doesn't listen.

I’ve been eating candy.  A lot of it.  My butt is going to be bigger than Kim Kardashian’s.  Actually, I don’t know why I even bother eating it;  I may as well  slap it directly on my ass and thighs.

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It’s a Halloween curse.

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Every year, we buy a ridiculous amount of candy for the office.  I work for a doctor and our patients like holiday decorations … and candy.  So Halloween is a big deal that the patients look forward to.  At least that’s our general excuse for having enough sugar to put us all in a diabetic coma.

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Halloween candy is so different from regular candy.  It comes in “fun size” and “bite size.”   So we’re seduced into thinking that hey, enjoying a couple pieces of these little things won’t be a big deal.   But when I look at my wastebasket at the end of the day and it is full of little bits of shiny candy wrappings I have a heart attack.   Did I really eat that much?   WTF happened to my brain?  Did my mouth not listen to my stomach when it was screaming “NO MORE CANDY.  YOU WILL DEVELOP HALLOWEEN BUTT.” Apparently not.   The candy corn is still calling my name and my mouth is still drooling.

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The easiest thing to do is get rid of the Snickers, Paydays, Baby Ruths, etc.  Just use some self control and stop eating the &*#@ing candy.  But (or should I say butt) the damage has already been done, giving the phrase, “Go big or go home.” a whole new twist.

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Some years, I’ve not been home on Halloween.  Weight watching is easier when you’re not stuck with a bunch of leftover candy.   This year my son will be in town to trick or treat with his sister and brother.  That spells T.R.O.U.B.L.E.

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I might tag along with them.   Put some tape over my mouth, wear a sign saying Candy Makes Your Butt Big, and call THAT a costume.   At least I won’t have to tell any stupid jokes.

Here Kitty Kitty

I have two cats, Tigger and Charlie.  They are sweet and funny and loving, which is my biased opinion because I’m a cat person.  Admittedly, my cats are spoiled rotten, pampered and played with, and get along with each other …  most of the time.

Charlie is a gentle giant.  He’s an orange tabby with big green eyes and weighs a whopping 16 pounds.  Despite his size, he’s extremely agile.  He’s been known to vault his big kitty butt over couches, countertops and even the occasional refrigerator.  Remember John Belushi’s pudgy but agile Blues Brothers character Joliet Jake Blues?  That’s Charlie.  This cat loves his food and has a reputation for dumpster diving. His favorites include pizza and chinese pea pods.  He has a tiny baby-sound meow that somehow doesn’t match his physique but comes in handy when people pet him because he likes to meow.  He’s a lady’s man.  He’s also extremely laid back and unflappable.

Tigger, on the other hand, is a spazmo.  He’s a brown tabby with green eyes and sports an unusually long tail.  A couple years ago I adopted Tig from a shelter when he was 8 weeks old.  A kitten would be good company for Charlie, right?  And I  just, well,  wanted a kitten.  Besides, Charlie could use a little more exercise and a kitten would be a great workout partner.  Tig did not disappoint.  He loves to chase anything that moves, especially Charlie.   Tigger is both shy and curious.  Nothing motivates him to come when you call his name unless  you have something shiny to dangle, or a treat, catnip, or anything that might resemble a snake …. string, ribbon, a fake snake … whatever.  He’s also seduced by french fries and crackers.

Mind you, pets are no substitute for family, friends, children or significant others.  However, Charlie and Tigger are good company.  When I broke my leg a couple years ago (actually I broke my left leg and foot, and sprained my right ankle), Charlie spent every day of the 6 weeks I was stuck in bed right by my side.  And they protect my house … sort of.   Every spring they manage to hunt down several mice and bring them to me when I get home from work.  On a cold winter night last year I came home to a crazy mess of broken plates in the kitchen and crooked lamp shades in the living room.  Tigger stood sentry next to the home wrecker … a bird that somehow, some way, managed to get INSIDE.  The bird was bigger than Tig, and he tried to corral that crazy thing until I threw a towel over Mr.  Bird and ushered it outside.

Okay, so they really don’t protect the house.  But don’t tell them that.

For those of you who have pets, you know that when they get sick, the cure always involves an unexpected layout of money way beyond what seems reasonable.  Charlie is prone to urinary tract infections.  My technique for getting sick or injured cats inside their carrier is a masterpiece of bribery and foolery.   Last week we made the trip to the clinic … and waited over 2.5  hours.  Charlie had to pee, but couldn’t.  He managed a few sorry little puddles on the floor.  He was hot and shedding fur was floating around the room like milkweed.  I was hot (and crabby) and was sweating enough to melt magazine ink all over my hands in a frantic attempt to fan myself.  My stupid lupus rash glowed purple under the lovely harsh lights of the exam room.  So pretty.  At least the cold tile floor helped the cat.  I couldn’t justify stripping down and laying next to him, so I suffered in silence.  Outside our room, dogs were howling, cats were hissing, and we both stared at the door, praying for redemption, which finally came with some antibiotics after I handed over my VISA card.  Oh yeah, and a reminder to make a follow up appointment for a urine specimen in 2 weeks, just to be sure the infection is cleared.  We get home and are greeted by Tigger, who is now convinced that Charlie returned with  a bad case of the cooties.  He hissed at Charlie for two days.  Charlie could have cared less.

I know some folks might think I’m well on my way to being one of those old lady cat people, walking around with clothes covered in cat fur, and a kitchen pantry filled with cans of cat food.  I have a bunch of kitty Christmas ornaments.  I own earrings and pins with cats on them.  I don’t have any grandchildren yet, so I call Charlie and Tigger “my boys.”  Kitty toys litter my living room … little mice, balls, and catnip squares.

But here’s the thing.  These guys don’t care what I look like.  And lately, between the prednisone and the lupus flare ups, I’m a little worn around the edges.  Charlie and Tigger  just want to sit on my lap, purr and chill out.  When they act like total goofballs who run around and chase their tails, I often forget about the crummy day at work, or the scary doctor visit, or the infusions I deal with every three weeks.  These kitties are good for the heart and soul.

Now, if they could only learn how to cook and fold the laundry.  But even I know that’s never gonna happen any time soon.   Maybe some day 

30 Things About My Invisible Illness You May Not Know

I’m posting this Meme in support of  National Invisible Chronic Illness Awareness Week.

1.  The illness I live with is: Systemic Lupus.  I also have Sjogren’s Syndrome, autoimmune hypothyroidism, and fibromyalgia.

2.  The year I was diagnosed was: 1992.

3.  I had symptoms since: I was 9 years old.  Nobody knew what was wrong with me at that time, except I was anemic and tired.  In 1989 I began experiencing additional symptoms that went undiagnosed for several years.

4.  The biggest adjustment I’ve had to make is: Accepting my limitations, avoiding sunlight and knowing that my health is tenuous, at best.

5.  Most people assume: That aside from gaining weight (from years of chronic steroids) I look relatively healthy.

6.  The hardest part about mornings are: Not knowing if I will be able to move without pain.

7.  My favorite TV medical show is: House … mainly because it’s smart and funny.  But also because according to Dr. House “It’s never lupus.”

8.  A gadget I couldn’t live without is: Well, it’s not really  a gadget, but I couldn’t live without my sunglasses.  I even have tinted glasses to wear inside when my eyes are really bothered by certain lighting.

9.  The hardest part about nights are: Being in pain and having difficulty falling to sleep.  Feeling alone and isolated.

10.  Each day I take: 14 pills in the morning and 6 pills at night.  And every three weeks I go to the hospital for infusions that take all day.

11.  Regarding alternative treatments, I: would like to try acupuncture if I could afford it.  Therapeutic massage is beneficial when my skin isn’t combating vasculitis.

12.  If I had to choose between an invisible illness and a visible illness, I: have had both and would like to have neither.

13.  Regarding working and career: I’m just trying to hold on to the job I have now.  I used to think I had a career when I was in my 20’s and 30’s.  That was a while ago.

14.  People would be surprised to know: the amount of time and energy it takes to do what used to be routine things in life, like grocery shopping and cleaning.

15.  The hardest thing to accept about my new reality is: there is no cure for my disease.

16.  Something that I never thought I could do with my illness that I did: was be able to travel.

17.  The commercials about my illness: do not exist.

18.  Something I really miss doing before I was diagnosed is: Spending time outdoors in the sun and swimming!

19.  It was really hard to give up: my independence.  There are certain things I just can’t do and have to ask for help.

20.  A new hobby I have taken up since my diagnosis is: Blogging about having lupus!  Also knitting AND painting.  I’m a beginner at both but thoroughly enjoy the creativity and challenge.

21.  If I could have one day of feeling normal again, I would: spend the day at the beach, walking along the shoreline and searching for sea glass.

22.  My illness has taught me: patience and humility.

23.  Want to know a secret?  One thing that people say that gets under my skin is: “You look so good today!  You must be feeling better!”

24.  But I love it when people: ask if they can help, make me laugh, and let me help them when I can.

25.  My favorite motto, scripture, or quote that gets me through tough times is: “When you get to the end of your rope, tie a knot and hang on!”

26.  When someone is diagnosed I like to tell them: You are not alone.

27.  Something that has surprised me about living with an illness is: how many people expect you to carry on as if you had no limitations.

28.  The nicest thing someone has done for me when I wasn’t feeling well was: More things than I can list!  I am blessed with kind, thoughtful and caring family and friends.

29.  I’m involved with Invisible Chronic Illness Awareness Week because: I have systemic lupus and want to raise awareness about not only my disease, but about all invisible and chronic illness.

30.  The fact that you read this list makes me feel: very grateful!  Thank you!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers September 14-18,2009 at www.invisibleillness.com