Tag Archives: Expectations

Trust The Process


There’s nothing like a enormous, old-fashioned calamity to get my creative mojo in maximum overdrive.

Last month I experienced a big one.  I lost my job of 18 years.  Holy crap!  Don’t ask me about the details.  Trust me, you don’t want to know.

I took the news on the chin, packed up my office, drove home and crawled in bed.  Then I proceeded to cry, scream and freak out in more ways than I thought humanly possible. 

Fortunately, with the support of friends, family, wine and miscellaneous drugs, I avoided a trip to the crazy farm.

Still, I was left with quite a challenge.  How is a middle aged woman with lupus, who has an extremely photosensitive skin condition, chronic joint pain, increasing cognitive dysfunction, kidney damage, central nervous system deficits, anemia and minimal physical endurance going to find a well-paying job?  How is she going to find a job that allows her to be absent from work every three weeks so she can go to the hospital for day-long infusions?  How will she pay her bills and health insurance premium?

A life of crime had too many start-up costs.  And I didn’t want to cash in my vast fortune of inherited wealth.

Instead, I decided to trust the process.

Sometimes, you just have to rely on optimism that even if your life seems like it is going down the toilet, it probably won’t. Change is hard.  Life isn’t fair.  Having lupus sucks.  Being unemployed sucks even more.   However, I firmly believe there is a process that will keep me resilient and open to all these changes, as long as I have a little faith.

I’ve spent the last six weeks spinning a lot of plates.  I filed for unemployment and got my resume updated.  If I can find a job where I can work in incandescent light, take frequent breaks to rest, accommodate a zillion doctor appointments, be relatively stress free, and make enough money to afford increasing medical expenses … great.  But I also applied for disability because my health limitations are pretty crazy and aren’t going to miraculously evaporate any time soon.  Realizing I can actually qualify for disability is hard to accept.  My doctor had a great way of explaining my stress, health and work challenges and living with lupus.  She said “just because you can drive yourself to the office doesn’t mean you can actually do your job.”  Mind you, I haven’t turned into a full-fledged nut case but check out this work-related-stress site called Cubicle Freak Out.

Trusting the process involves realizing your limitations, emotionally and physically.  And I have an ever-growing list of both.

Trusting the process also means that if you’re lucky, people will help you get through the bad times, as well as celebrate with you when life is good.

Trusting the process helps prioritize what is truly important. And I’ve come to understand that it isn’t about where I live, or what I may or may not do for a living.  It isn’t how much material stuff I have accumulated or what kind of car I drive.

Trusting the process is realizing that my overall health is my biggest priority.  I want to live long enough to enjoy my family, friends and future grandchildren.

To that end,  I will soon be moving to another city and live with my sister.  I was eight years old when she was married and left home, so this will be a new adventure.   I’m grateful and looking forward to sharing her big house, her patio, her garden and most of all, her company.  I’m hoping to devote more creative time to blogging, photography and painting, making jewelry, cooking and helping my sister manage her home.  My sister is such a blessing!

Life is not a static experience.  One day I lost my job and before I know it, I’m starting over in a new city.  And once again, living with lupus has changed the quality of my life.

Trusting the process does make a difference.  Try it.

You Better Not Cry


Like the song says, ” … you better not cry.”  In a perfect world, I would take my own advise.  Earlier this month I wrote about all sorts of great ways to stay sane during the holiday season.  I also said that there was no such thing as a perfect Christmas, a perfect family … blah, blah, blah.

And it makes sense.  On paper.

So, of course I was caught off guard when I had my Annual Christmas Meltdown the other day.  And it was a beauty.

Drama. Tears. Angst. Unrequited crap.

My Annual Christmas Meltdown

How does an otherwise relatively normal person lose their mind, freak out over all things related to the holidays and have the expectations of a four-year-old during the Christmas season?

You tell me.

At least this tantrum lasted a short time.  And I’m so over it now.

My inner four-year-old is still there, but I gave her some chocolate so hopefully she’ll shut up and behave.

Eating chocolate (in moderation) will take your mind off just about anything that is unpleasant or frustrating about the Christmas season.  Plus it’s a lot less expensive than therapy or SSRI’s.

The December Rush


I hate Christmas shopping. Don’t get me wrong. I honestly like the Christmas season and look forward to spending time with family and friends. However, being in a crowded store with maniac shoppers is enough to throw me into a crazy lupus flare. And yet, somehow I found myself in one of the big box stores the day after Thanksgiving, with my son, looking at flat screen televisions. And the stupid thing about that was knowing he wasn’t going to buy anything. However, the other nine million people in the store were going nuts with their credit cards. I hope their retail therapy experience made them happy, bless their hearts.

Nothing is worth standing in line outside, in the dark.

Yeah, let's all stand in line outside and wait for the store to open!

The December Rush is upon us.

Black Friday.

Cyber Monday.

Panic shopping at the last minute for gifts we weren’t going to buy but now feel we must.

Some of us (not me) are compelled to bake enough cookies to feed a small country.

Are you suffering from the symptoms of The December Rush? If so keep reading, because during this time of the year, I’m all about slapping some common sense into your head in BEFORE you get carried away.


#1 Do you really want to stand in line to buy stuff? Of course you don’t! Standing in line only makes you more tired. Pay somebody 5 bucks to shop for you. It’s worth it. Better yet, shop on line.

#2 Does old Aunt Myrtle really need your homemade peanut brittle? Not if she wants to keep her teeth. Buy her something soft … like warm, fuzzy socks … from the drug store, where the checkout lines are short.

#3 Don’t be afraid to give people The Gift of Disappointment. It’s free and they will get over it.

#4 You know what else is free? Driving around and looking at Christmas lights. It’s fun and you’ll have the satisfaction of knowing that YOUR electric bill won’t be as high as the guy whose house looks like it’s on fire.

#5 Wash your hands. Sleep 8 hours a night. Drink plenty of water. It’s easy to get sick when you’re stressed out and heaven knows you don’t have time to be sick in December.

#6 Try to not get sucked into the vortex of buying a Lexus with a big bow on it. Or a puppy with a big bow on it. Who does that? Really?

#7 Wine is a good thing. Not to be confused with whine, which is terribly overrated.

#8 Sing Christmas songs. And if you can’t sing well, sing anyway. Singing lowers your blood pressure.

#9 Remember that you are not perfect, the world is not perfect, your family and friends are not perfect, and there is no such thing as a perfect Christmas.

10. If you think you’re going to lose your mind over the holiday pressure, go right ahead. Everybody is entitled to a meltdown now and then.

#11 December lasts only 31 days. Eventually spring will come, which is what I really look forward to enjoying.

Finding The Sweet Spot


It’s that moment when you realize the bowling ball is in the pocket.  It happens when you connect PERFECTLY with the tennis racket, baseball bat, or golf club because you can feel and hear it.  And if you’re a cat, like my Charlie (pictured above), the ultimate sweet spot is purring on a cozy blanket, facing the sunshine, and taking a 3-6 hour nap.  We all look for the sweet spot, wherever it may be.

Today I noticed that life has been rolling along smoothly for almost an entire week.  Having made that assertion,  no doubt I’m pushing my luck for a fun weekend, but what the heck.  I made plans anyway! In addition to keeping up the regular 9-5 workpace, I attended a fabulous black-tie wedding and reception on Saturday (It’s fun to get dressed up now and then!) AND a baby shower on Sunday (My friend Kathy and I went a little overboard at Babies R Us.  Everything was soooo cute!).  I went to a music rehearsal on Monday evening.  I bought groceries, put them away, cleaned the kitchen, took out the trash, and washed three loads of laundry.  No joint pain.  No steroid hot flashes!  I remembered to go to a long-overdue therapy appointment and left without using even one Kleenex!  Yeah baby …  I found The Lupus-Free Sweet Spot.

I like to celebrate the little triumphs in life.  I’m not planning to surf the perfect wave in Maui, or land a back flip on the balance beam.  I don’t have to sing Schubert’s Ave Maria and gracefully slide over the high notes.  I have faith.  Right now, it’s enough to have clear skin and walk without tripping.  That’s sweet enough for me!

Is This Really My Life?


Life can seem seriously warped and ridiculous when you have a chronic illness, like lupus.  I often feel like I’m swimming against the current, trying to make it to … wherever.

Most people go through their day doing whatever they do because it’s just a regular day.  I remember what that was like.  I haven’t had a “regular day” in years.  Lately, I dread waking up in the morning because I never know if the day is going to be physically and mentally challenging.  Usually it’s both but there’s always that chance it won’t be either.

I’m not talking about life as a rocket scientist.   I’m referring to the basic stuff, such as a quick stop to the grocery store because I can’t be over-exposed to fluorescent light.  Or accomplishing the difficult tasks at work in the morning before the headache, vertigo and eye strain starts slowing me down.  Or having a discussion while I’m in a lupus brain fog and trying to figure out why I said “apple” when I meant to say “telephone.”  This week my hips and ankles hurt like hell.  Last week, I had a low grade fever almost every day.  I’m not sure how many loads of laundry I can do tonight.  Why?  Because it’s painful to walk up and down 3 flights of stairs every hour when you’re dizzy and carrying a basket of clothes.  I can’t manage to be optimistic and upbeat lately.  As I said, it’s hard to swim against the current.  So I get discouraged with all this ridiculousness and find myself thinking “Is this really my life?”

I’m hardly a senior citizen but I often feel like a disabled old lady.  I don’t actually look disabled and that’s half the problem.  There’s no sign around my neck that says “Watch Out – This Woman Has Lupus.” When I look in the mirror it’s hard to believe I’m looking at me.  Who is this woman with thin and brittle hair that’s constantly falling out?  Good thing she bought a wig.  Her skin is paper thin from taking steroids all these years.  She has hives on her face again.   And look at those bruises on her arm.  Who hit her?  Did she fall?  Too bad she’s gained weight because of the medicine she’s on.

Will I be strong enough to scrape the ice and snow off my car this winter?  Will the glare from snow on the ground trigger another photosensitive rash?  Will I have the strength to work 40 hours a week?  Will I be able to be a steadfast and reliable friend, sister, mother, to those who are important in my life?

Roller Coaster Season


Get on the coaster cuz we're going up and down ... and up and down.

Last week, someone reminded me that we’re  just eight weeks away from Christmas.  Great.  Thanks.

Ever wish you could just quantum leap from Thanksgiving dessert to January?  For me, that time in between is Roller Coaster Season.  You know.  That time of the year when one minute you’re thrilled and the next minute you want to vomit?  Yes, I have expectations during Roller Coaster Season.  I want to hear Christmas carols and not cry.  I want to shop without being under the influence of prednisone. I want to be lupus symptom free.

Things start out normal enough beginning with Thanksgiving.  Yummy turkey, happy family and all the trimmings.  Next thing you know it’s time to deal with Christmas.  That’s when I get on the Coaster and brace myself while morphing into a crazy person.  My mood swings up and down and all over.  I could have a bad case of “Christmas Disappointment Syndrome” or the “Financial Ruin Virus”, or “If-That-Bell-Ringer-Smiles-At-Me-I’ll-Punch-Him-In-The-Face Disorder”, or “Too Tired To Care Disease”. or “Alone … Again Flu” or some yet-to-be-named Lupus complication.

Despite it all, I love being with my family during the holidays.  I enjoy wrapping gifts until 2:00 am on Christmas Eve.  Baking cookies can be therapeutic.  I try to show a little peace on earth with good will towards all throughout the year.  To look at me, you’d never see the turmoil inside.

And that, dear reader, is my biggest challenge.  Finding inner peace and balance during the month of December is a major physical and emotional drain.  Like I said … I have expectations.  I want my phone to ring.  I’d appreciate help decorating for the holidays.  I’d like to attend the holiday parties with a significant other.  Whaaa Whaaa Whaaa.  God bless my screwed up stream of consciousness … at least it’s predictable.  Yes, I acknowledge the abundance in my life.  Yes, I know nothing is perfect because I’m living proof.   I get it.  Really.

You better not shout.

You better not cry.

You better not pout.

I’m telling you why.

Roller Coaster Season is here.

Deal with it.

The Gift of Disappointment


My sister gets the credit for introducing this catchy little phrase into our family eons ago.  I frequently used it on my son when he was little.  Oh no Mom … I don’t want The Gift! Recently, I’ve been using it on myself and it isn’t fun.

Last week I had plans to sing for a special church service.  I went to the rehearsals, changed my calender around to accommodate this gig and even planned what I was going to wear, which is so not like me.

So the big day comes and I’m feeling lousy.  I have a fever.  My legs feel like concrete.  My body is trying to tell me to stop, slow down and rest.  Argghhh!  I honestly had no choice but to accept the gift of disappointment and stay home.

I did not want to accept The Gift.  I don’t like giving it, either.  And I don’t like having lupus.

Despite lupus and all the personal disappointments that go along with it, I am learning how to say “no.”  My survival depends on it.  I’m getting better at asking for help if I need it.  It’s a little easier for me to RSVP with a “thanks for the invite, but I can’t.”  I don’t always feel the need to justify my excuse if I have to cancel plans at the last minute.

When I sat down to write this entry, I expected to find the tie-in … the common thread …. to living with a chronic illness like lupus.  But The Gift is suitable for anyone attempting to find their own way in this world.

The Gift is not an excuse, mind you.  But it can be a blessing.