Tag Archives: Family

Life in Cape

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Life in Cape

The moving expedition to Cape Girardeau was crazy.  Note to self … moving on the hottest weekend of the summer is not a good idea.  However, I had no choice.  Armed with the physical and emotional help of friends, family, cold bottled water and the welcoming arms of my sister, I started a new chapter of my life.

The procession of boxes going in and out of my house seemed endless.

Almost reminds me of a procession of bridesmaids.  Except for the boxes.

The best photo-op came when my queen size box springs was taken out of the bedroom via the balcony, as it was too big to fit thru a narrow stairwell.

At the end of a very, very hot and sweaty day the crew was happy to pose for a picture.The Moving Crew

I’ve been in Cape  for a month.  Living with my sister is great.  We have established a routine of sorts, and my days are productive.  When I’m not taking care of the house, I’m busy making jewelry, which   I’m planning to exhibit my work at a local arts and crafts fair in November and am designing all sorts of fun earrings.  In a couple months I’ll host a wine and cheese “premier party” for my jewelry line, called Harmony Beads. At some point, I’ll have a Facebook page for Harmony Beads that will feature more inventory.

Designing and creating jewelry at home provides me with a creative outlet. It’s a very lupus-friendly activity. Because I have lupus, working at home lets me control my environment, especially when it comes to temperature and light.  I’m also able to take breaks when I am tired, and get up and move around when my joints get stiff.  These type of accommodations are not typically found in a traditional work setting.  In the meantime, my sister is providing me a home.  I am able to contribute somewhat with my unemployment check.  I should find out about my disability application soon.

Change is hard.  I didn’t ask to lose my job and move to another city, but I’m dealing with it. Every three weeks I return home to receive IVIG infusions and visit with friends.  I now have the opportunity to travel and visit my son in Wisconsin, my brother in Colorado, and my niece in North Carolina.  I may be unemployed and living with lupus, but I’m a tough cookie.

So many things in life are out of my control, yet I remain optimistic.  Lupus will continue to throw me some nasty curve balls, but I work hard at being thankful for the blessings and abundance in my life.

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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.

The December Rush

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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.

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#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.

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?

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???

Prayers for Sarah Jane

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I’m sharing this story in the hope you will read it and find room in your heart to pray for a special little girl that needs a lot of love and support right now.

My son has a half-sister, Sarah Jane.  She is eight years old with blond hair and the longest lashes in the world that frame her pretty blue eyes.  As you will see, Sarah has an amazing smile.  She’s a sweetheart and our family loves her more than words can say.

Matt's sister Sarah Jane, age 2

Matt's sister Sarah Jane, age 2

Sarah was diagnosed with epilepsy at a very early age, after what seemed like an unrelenting round of seizures.  Despite the medication side effects and slight developmental delays, Sarah loved to play and dance and sing … all the things that little girls do.  Just before her 3rd birthday, Sarah had a very bad seizure that lasted over 5 hours.  The doctors put her in a drug-induced coma in the hope that this seizure would stop and her brain would have time to rest.

When she was physically stable long enough to wake up, Sarah was blind and could not smile.  She now had cerebral palsy.  She could not swallow and required tube feedings.  She could no longer dance or sing.

Sarah on her 3rd birthday with her mom and dad

Sarah on her 3rd birthday with her mom and dad

In 2004, we celebrated Sarah’s 3rd birthday in the pediatric intensive care unit at the hospital.  She was in a coma and intubated at the time, so we sang Happy Birthday in hushed voices at her bedside.  The day I took this picture, I held steadfast to the hope that she would have many more birthdays to celebrate, despite overwhelming odds to the contrary.

And she did.

You can read Sarah’s story here.

Sarah can’t dance, but she can ride a special bike.  She can see much better now, thanks to eye surgery and glasses.  Sarah loves to cuddle with her big brother  Matthew.  She adores music and loves to sing and laugh.  She is truly a heaven sent gift for those of us who are blessed to know her.

Napping with big brother Matt

Napping with big brother Matt

Best of all, Sarah got her smile back!

Sarah with her mom, Sandy

Sarah with her mom, Sandy

This year, just before her 8th birthday, Sarah had problems breathing and had to return to the hospital.  She has developed pneumonia and other complications that required her being placed on an oscillating ventilator to help her breathe and give her body the necessary time and energy to rest and recover.  The doctors have her on a lot of different medications.  Because she’s on a breathing machine, she has been given medication to keep her asleep and comfortable.

Sarah had her 8th birthday in the PICU.  There were balloons and signs and Happy Birthday songs for Sarah, but she wasn’t awake to hear or see the celebration.  Her big brother Matt, little brother Graham, sister-in-law Laura and Aunt Sue (me) spent Easter Sunday with her, taking turns visiting, holding her hand, and praying for a speedy recovery. The road back home for Sarah will be a long one … many weeks to come of waiting, watching, and praying.

I’m asking for prayers and good wishes for all of you who read this post.  I believe in the power of prayer and positive thinking.  Please keep Sarah and her family in your thoughts and hearts.  Pray for the amazing doctors and medical staff that are treating Sarah 24/7.  Their care and compassion is miraculous.

Thank you for taking the time to read about Sarah.

Once again, we’re waiting for Sarah’s smile to return.