Category Archives: Gratefulness

Goodbye 2010

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What will the new year bring us?  Last year was pretty busy.    In no particular order, I

1.  Bought a new car.  Good times.

2.  Lost my job.  Bad times.

3.  Moved to a new city, Cape Girardeau, Missouri.

 

 

 

4.  Started a small (yet modestly successful) business designing and making jewelry.

5.  Reconnected with a great friend from high school.  Hi Maria!

6.  Traveled to North Carolina for a family birthday celebration along the Laurel River.   Sublime!

 

 

 

7.  Traveled to Wisconsin and celebrated Halloween with my son and daughter-in-law.  We also went to a rock shop, and visited the Audubon Society nature preserve where he works.

8.  Read 8 books.

9.  Accomplished a lot of virtual farming in FarmVille.  Belted cows are a very good thing.

10. Lost 38 pounds.

11.  Took a class in wire wrapping.  Used one of the rocks I bought in Wisconsin.

 

 

 

 

12.  Nursed a very sick cat back to health.  Charlie used one of his 9 lives.

13.  Made 15 trips to the hospital for immunoglobulin infusions.  Yeah St. Louis University Hospital!

14.  Photographed orchids, children, trees, animals, jewelry, and heaven knows what else.

 

 

 

15.  Applied for social security disability and was approved on the first try.

16.  Successfully avoided unhealthy exposure to the sun and UV light.

17.  Witnessed first hand the damage and devastation of a F3 tornado.  This one was on New Year’s Eve.  A 50 ft. white pine tree uprooted and crashed through my ex’s home.  Nobody was injured.

 

 

 

18.    Adjusted to life out of the fast lane of full-time employment.  That was a challenge.

19.  Celebrated my sister’s retirement.  Actually, we’re still celebrating.

20. Learned not to feel guilty about getting 8-10 hours of sleep every night.

All in all, after a rocky start and a scary ending with a tornado, 2010 wasn’t too bad.  This year I’m looking forward to a less stressful life, managing my health and living with lupus in the slow lane.    Despite everything I remain optimistic and determined to live in the present.  Stay tuned.

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.

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.

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!

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?