Category Archives: Recent Posts

Trust The Process

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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.

Talking Trash

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My cell phone went missing Monday evening.  After a couple hours of fussing over “what-the-hell-will-I-do-if-I-can’t-find-my-phone” I decided it would turn up if I didn’t try so hard to look for it.  I stopped looking because I’m so very optimistic about expecting happy endings.

That didn’t work.

So I went to my office the following day, filled with absolute certainty that by the time I got home I would find it.  That didn’t happen either.  Rats!

I hate to admit being dependent on a cell phone but alas, I am.  Really.  Dependent.  My virtual universe is loaded on my iPhone.  Pictures, applications, maps, appointments … the works.  Of course I could get another cell phone if this one was truly MIA forever.  But what a hassle!

After muttering to myself when I returned home from work  (and creeping the cats out in general) I decided to try a different search method.  I started calling my phone, room by room, from my land line in the house.  Called the bedroom.  No answer.  Called the basement.  No answer.  Went to the garage and called the car.  No answer.  No ringing.  No nothing.

Finally, I went to the kitchen and called.  Nothing.  However, the stovetop fan was on because I was trying to make dinner, so it turned it off to listen.  Oh yeah, I was expecting some friends over for dinner to watch American Idol and was also rushing around cleaning up at the last minute.  I’m the queen of multi-tasking … dinner, vacuuming, table setting, and cell phone searching.

But I digress.

Finally, FINALLY, I hear a muffled “ring ring” (like the old fashioned phones) coming somewhere near (or under) the sink.  OMG!  It’s in the trash can!

The trash can that is filled with the most god-awful, gross food crap you could imagine.

I grab a new trash bag and start pulling junk out of the trash can and into the new bag.  One by one, I pulled out chicken bones, which really excited the cats.  They gathered ’round me sitting on the floor, as if they wanted to help search.  Cats are such fake-out artists. I knew they were only interested in potentially plundering some chicken parts.  There were multiple other gross things discovered in that icky bag, including some leftover cake batter, that I had to maneuver around.  It was tricky business, indeed.

And let me just say that when you are exploring the contents of a trash bag and if you happen to come upon a lot of  discarded red velvet cake batter in a hasty manner, your kitchen is poised to look like an episode of Dexter doing what he does best.

I did just that and it wasn’t pretty.  Unless you like to watch autopsies.

I was praying to the patron saint of kitchen cleanup to help me find this stupid phone and restore my kitchen to glistening cleanliness before my friends show up and find me splayed out on the floor digging in the trash, looking like I lost my mind.  Which I probably had at that point.

But to my horror, I STILL couldn’t find the phone.

Now I have 2 big trash bags half filled with crap. And no phone.

So I called my cell phone again.  This time I separated the bags so I could tell which one was ringing.  Did I mention that it is harder to locate missing cell phones in dark trash bags, as opposed to light colored trash bags?  And I’m not profiling anything here.  It’s just the plain truth.

Finally.  I find my phone, covered in butter, cake batter, indescribable fuzz, and a random chicken bone sticking out of the side of it like a fake antenna.

But Lordy, it was still ringing!

The cats left the kitchen, quite disappointed.  I hastily bagged up the second trash bag, washed the floor, cleaned up my iPhone and the case, set out the fruit plate and hummus, washed my hands, put on my pearl necklace and apron and was ready to great my company with no evidence of the insanity I just barely survived right before they knocked on my front door.

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Yep.  Tuesday night, nobody knew about the riotous cell phone incident.

Until they read this post, that is.

Whatever It Takes

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Carry on.  Keep your wits about you.  It could be worse.  One day at a time.  Stay optimistic.

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Trite and banal?  Yes.  But this type of self-talk is what works for me right now.  Doing whatever it takes to stay functional in my little world is what I need to do.  Health problems.  Money problems.  Car problems.  Family problems.  Lord knows we all have them.  And my little collection of the aforementioned stuff seems to be ramping up just beyond my usual level of tolerance.

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I haven’t been blogging regularly.  My intention is to get back on track and write more often.  Some things (like writing) I don’t miss until I stop doing or seeing or experiencing them and then out of nowhere, I realize, “…Hey, what the hell happened to LupusRanting?  Did she vanish?  Win the lottery?  Wind up on a milk carton?  WTF? …”

For those of you who stop by regularly, thanks for stopping by regularly.

Me and my bad attitude aren’t going anywhere.  For now.  Whatever it takes to carry on.

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.

Kidney Schmidney

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I thought my kidneys were working just fine.  According to my rheumatologist, not so much.   Like many people who have had lupus for a long time, I assumed that if after 18+ years of living with this disease, whatever bad stuff would happen would have already happened.  Assuming is never a really smart idea.  When my lab tests came back abnormal, I had to pee in a jug for 24 hours and send it off for testing.  Ick.

KIDNEY - MORE THAN JUST A BEAN

So now I’m going to a nephrologist later this week to learn more about lupus nephritis, which is possibly the culprit that has decreased my kidney function and thrown my laboratory studies out of whack.

I hate it when that happens.

The thing is, I know absolutely NOTHING about kidney disease.  I’m well versed about skin disorders, gastrointestinal disease, heart conditions, and a bunch of other stuff, but understand zero, zip, nada when it comes to those bean-shaped filters.  That will all change by the end of this week.

One of my brothers will be going with me to see this doctor.  I’m very grateful for his support and medical knowledge, as he is a nurse.  Otherwise, I would probably be sitting through the appointment in a fugue state, hearing the doctor say “Blah, blah, blah kidney.  Blah, blah, blah ultrasound.  Blah, blah, blah biopsy.  Blah, blah, blah come back in 6 weeks.”  That’s pretty much how I’m currently coping with the situation.

Symptoms of kidney dysfunction are pretty nondescript and vague.  Frequently urinating?  Check.  Blood in urine?  Nope.  Froth or bubbles in urine?  Check.  Swollen hands and feet at the end of the day?  Of course.  I’m female in my mid 50’s … it happens.

For now, the most effective way for me to deal with this new wrinkle in my journey with lupus is to watch the Olympics, go to work, tune in to American Idol this week, get my IVIG infusions every three weeks and continue playing Farmville.  In other words, carry on as usual and don’t think about it too much.

I can’t wish this away, so I might as well live my life. Right?

Good thing I’ve met my deductible this year.

The Farmville Life

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I’ve been busy building a plantation in Farmville.  It’s a Facebook application that I told myself I wouldn’t get involved with because I’m a very, very busy person who has absolutely no time for such nonsense.  That was two weeks ago.

I am now the owner of  TWO houses, a collection of animals, trees, crops, a barn, farming equipment, a lake, flowers, a groundhog, a dairy, a golden troll, various topiaries, and heaven only knows what else.  And I’m just a BEGINNER.  The object of this game (at least I think there’s an object here somewhere) is to grow crops, fertilize your neighbor’s farms, give them presents, and earn money to grow more crops, buy buildings and animals, and expand your farm.  You can win ribbons and magic eggs!  It’s a never-ending cycle.

In order to play Farmville, you  need neighbors.  Lots of neighbors.  I have friends who were already playing this game, so I started off with a few.  But if you want to get anywhere, you find more Farmville friends.  So you go hunting for neighbors.  It’s like a dating referral service … sort of.  Now I have neighbors from all over the world.  But I can always use more.

Honestly, I don’t know how I was swept up into this virtual universe, but here I am.  Checking to see when I can harvest my tomatoes or pumpkins.  Collecting  eggs in the chicken coop.

Before you go dissing this insipid pastime, think about this.  Over the weekend, my sister was snowed in with 10 inches of the white stuff.  Her city was hit hard and nobody was plowing, shoveling or digging.  My sister’s kids, neighbors, and friends were not available to shovel her driveway, clean off her car, etc.  She was stuck.  And she had plans to go out of town to celebrate our brother’s 50th birthday.  Obviously, she couldn’t go anywhere.  HOWEVER …. I have a friend on Farmville, who is also a real-life friend and lives a couple miles from my sister.  We were chatting on-line about our farms Saturday morning when she mentioned that her driveway just got plowed.  I told her about my sister’s unfortunate situation and the next thing I know, My FARMVILLE NEIGHBOR sends her snowplow guys over to my sister’s house!  See how wonderful Farmville is?  Sort of?

If nothing else, it’s an eternity away from dealing with lupus and medication.  For me, that’s a good thing.

So far, I’m keeping up with household chores, paying bills, and running errands.  I haven’t totally lost my mind in Farmville … yet.

And if you want to be my neighbor, let me know.

Stopping Steroids … Finally

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For the past 10 years or so, I’ve been on prednisone.  Most people that have autoimmune disease wind up taking steroids.  The lucky ones can be on them for short periods of time.  The not-so-lucky … like me … require high doses for long periods of time to keep their immune system in check.  Sometimes, I’ve been on 80 mg a day for months and months, and months.  Ick.  My hair gets brittle, my skin thins out like tissue paper, I develop bruises everywhere, and worst of all, I get a little crazy.  Can’t sleep.  As a bonus, I get this voracious desire to eat anything that isn’t tied down or locked up.  But the best is the paranoia that is known to set in with high doses. You could call me a little nutty because occasionally, I am certifiable.

I’ve finally … FINALLY … taped completely off these evil little pills.  At this point in my disease, other medications, most likely the IVIG infusions I get every three weeks, are taking the lead and keeping most flare ups at bay.

Stopping steroids isn’t easy.  If you taper too quickly  (as I have done more than once), you can easily find yourself dealing with adrenal insufficiency.  Basically, it feels like you’re having a heart attack and are about to die.  If you stop completely (which I have not attempted) you can go into adrenal crisis, which can be life threatening.  My taper regimen took about three months, once I got the go-ahead from my rheumatologist.

Long term use of steroids can cause all sorts of damage.  It can cause permanent bone loss, high blood sugar, high blood pressure, thinning of the skin, and what is nonscientifically referred to as a ‘camel hump’ of a fat deposit on the back of the neck. It also likes to settle in the abdomen for a permanent little pad of tummy fat.  There are no exercises in the world that will get rid of them.

I know deep down in my steroid-damaged bones, that someday there will be a cure for this crummy disease.

In the meantime, I’m off steroids and I’m doing my happy dance!