Tag Archives: rant

one year later ….

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My sister once told me that it takes about two years to settle in to a new living environment, new city, new community, new life.  That would mean I am halfway through the process.    Life is good in Cape.  At the same time, I really do miss many aspects of  my old life in my hometown.  I can’t help it.

Initially, I spent a lot of energy shutting out and shutting down the frustration and anger that comes from losing a job and an independent life.  Living with lupus for 19 years taught me to push through the process.   I know how to operate in “survival readjustment mode”,  because that’s what people with lupus do.  It wasn’t hard to transfer those skills to life on disability and unemployment.   I’m getting good at that.    Moving forward is more challenging.  I’m not sure why.  It just is.

Some elements of life seem to be in a continual state of uncertainty.  Like my health insurance.  I may or may not get state aid and if I do, it may or may not cover the infusions I need every three weeks.  I may or  may not move to Wisconsin; it depends on money and health insurance.  Stuff like that drives me crazy, so I try not to think about such things very often.  I have no control over it anyway.

Spiritually and emotionally I feel like I’ve been living in a desert.  It took me about a year to realize I’ve wound up in the desert, and I guess it will take a while to figure how to get out of it.  I have attempted to reconnect with my spiritual self through music.  Singing has always been my preferred method of praying.  I hope it works.

Some days I consider myself very fortunate.  I’ve had some amazing trips this past year with friends and family, and have visited parts of the country I’ve never seen before.  There have been a few occasions when I’ve been able to drop whatever I was doing to help someone out during a major or minor crisis.  I’ve reconnected with my inner artist and continue to design jewelry.

Obviously, I haven’t written much this year.  I was shocked to see my last post was in February.  My inner slacker has been running wild.  Then again, I’m at it again today and maybe I’ll be inspired to write on a more regular basis.

I guess I look at everything with a very cautious, tentative attitude these days.  It’s an intentional tactic, one that I haven’t tried out very often in the past.  If it seems vague and uncertain, I guess it is because it’s a reflection of how I feel.  For now, I feel I’ve reached a saturation level of physical and emotional chaos and upheaval.    I’m trying my best to stay calm and carry on.

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Boxes, Bins and Flowers

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One week from today I’ll be living in another city.  I’m up to the task of moving and the adventure that comes along with it.

The Moving Tower of St Louis

The Moving Tower of St. Louis

This week I had a semi-surprise goodbye party hosted by The Ten-Thirty Singers, a church music group I’ve been singing with for over 25 years.  Today I enjoyed a goodbye lunch with some great gal-pals … the PMS Girls (which stands for Peggy, Pam, Mary Anne and Sue).  Nothing like a 3 hour lunch on a Saturday to motivate you to take an afternoon nap.  I’ve been toasted, gifted, regaled with flowers and hugged to the max!

Next week I am hosting several packing parties at my place.  Amazing the things some people will do for a free lunch.

Boxes and bins are my new best friends.  I’ve acquired quite the selection of plastic bins with locking handles.  I even went so far as to delegate colors for certain rooms.  The pink ones are storage, blue for my bedroom, green handles for dining room, and purple handles for linens.  They stack and won’t fall apart.  They will never end up in a landfill because I like them too much, so in a way, I’m “going green” … or pink or blue.  I never thought I’d be one of those people who color coded anything.  I used to laugh at them.  Now I’ve become one of them.

At first I was strolling down memory lane while sorting all my worldly goods.   I was getting nothing accomplished.  Now I am ruthless about what stays or goes.  Goodwill has been happy to see me recently.  What I don’t keep is going to charity.  I have no patience for selling stuff on Craig’s List.

Surviving a move when you have lupus or any chronic illness is a tricky little game to master.  So to keep sane I work in small increments of time, sandwiched with a bit of  rest, like writing this post.    I try not to do more than 5 hours of work a day.  Hopefully, my joints will not protest and my vascular problems will remain quiet.   You won’t seem me outside much on Moving Day.  It will be hotter than hell and I will have the assistance of my son and a couple of his strong high school buddies doing all the lifting and shoving.  Having physical limitations can come with some benefits, such as help from others and I have no problems letting people move heavy stuff.

I did have a bit of a situation while cleaning last week.  I kept smelling something yucky in the living room.  At first I thought it was food or cat barf but the smell wasn’t constant.  Then I thought that maybe it was ME, as I was sweating up a storm and was possibly stinking up the house.  Finally, I decided to move the furniture around to look for the source of the by now, rancid smell.  So under the couch I found the source of the problem.  A dead bird.

Natural born killers?  Not so much.

Natural born killers? Not so much.

I immediately grabbed some paper towels, threw it out, and fumigated my house. Then I started wondering just where in the hell did it come from?  I mean really, how did it get inside my house?  Did the cats kill it?  If they did, why didn’t they eat the damn thing?  That’s what cats are supposed to do.

My only concern with the cats at this point is the 2 hour drive to another city.  They are not fans of cat carriers and car rides.  I’m expecting them to howl and shed all the way to Cape.  Who knows what will happen when we arrive at our new home.  Stay tuned.

I’ve moved a total of nine times in my life, most of them as a single mom.  By my standards, that’s a lot of moving, but I know people who have moved a lot more than that.  Moving sucks, but on the other hand, if I lived in one place all these years I would have accumulated too much stuff.  At least moving forces me to clean up and throw out. And by now, I’ve learned a thing or two.

One, get yourself some bins and forget the boxes.

Two, if you must use boxes, go for the paper boxes with lids. 

Three, don’t pack everything too soon, or you’ll be digging through your kitchen stuff to make dinner, like I’m doing tonight. 

Four, hang on to wrapping paper … my friend MaryAnne gave me 5 enormous bags of white paper left over from her move a couple years ago.  What a lifesaver! 

Five, and this is the most important, let people help you.

When the dust settles, I’ll start blogging again and fill you in on the details of my great adventure.

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.

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!

You Better Not Cry

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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.

Halloween Butt

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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.