Category Archives: FAITH

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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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.

A Christmas Wish

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A wish for you, dear Readers, for this Christmas and New Year.  Borrowed from John Denver with thanks and hope for a wonderful holiday … from my heart to yours.

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The season is upon us now                                                

A time for gifts and giving.

And as the year draws to its close

I think about my living.

The Christmas time when I was young.

The magic and the wonder.

The colors dull and candles dim

And dark my standing under.

Oh little Angel shining Light

You’ve set my soul to dreaming.

You’ve given back my joy in life

And filled me with true meaning.

A Savior King was born that day.

A baby just like you were.

And as the Magi came with gifts

I come with my gift too.

That peace on earth fills up your time

And brotherhood surrounds you.

That you may know the warmth of love

And wrap it all around you.

It’s just a wish, a dream I’m told

From days when I was young.

Merry Christmas to all of you.

Merry Christmas, everyone.

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?

Safe Harbour

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safeharborWhen you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

30 Things About My Invisible Illness You May Not Know

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invisible illness

I’m posting this Meme in support of  National Invisible Chronic Illness Awareness Week.

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1.  The illness I live with is: Systemic Lupus.  I also have Sjogren’s Syndrome, autoimmune hypothyroidism, and fibromyalgia.

2.  The year I was diagnosed was: 1992.

3.  I had symptoms since: I was 9 years old.  Nobody knew what was wrong with me at that time, except I was anemic and tired.  In 1989 I began experiencing additional symptoms that went undiagnosed for several years.

4.  The biggest adjustment I’ve had to make is: Accepting my limitations, avoiding sunlight and knowing that my health is tenuous, at best.

5.  Most people assume: That aside from gaining weight (from years of chronic steroids) I look relatively healthy.

6.  The hardest part about mornings are: Not knowing if I will be able to move without pain.

7.  My favorite TV medical show is: House … mainly because it’s smart and funny.  But also because according to Dr. House “It’s never lupus.”

8.  A gadget I couldn’t live without is: Well, it’s not really  a gadget, but I couldn’t live without my sunglasses.  I even have tinted glasses to wear inside when my eyes are really bothered by certain lighting.

9.  The hardest part about nights are: Being in pain and having difficulty falling to sleep.  Feeling alone and isolated.

10.  Each day I take: 14 pills in the morning and 6 pills at night.  And every three weeks I go to the hospital for infusions that take all day.

11.  Regarding alternative treatments, I: would like to try acupuncture if I could afford it.  Therapeutic massage is beneficial when my skin isn’t combating vasculitis.

12.  If I had to choose between an invisible illness and a visible illness, I: have had both and would like to have neither.

13.  Regarding working and career: I’m just trying to hold on to the job I have now.  I used to think I had a career when I was in my 20’s and 30’s.  That was a while ago.

14.  People would be surprised to know: the amount of time and energy it takes to do what used to be routine things in life, like grocery shopping and cleaning.

15.  The hardest thing to accept about my new reality is: there is no cure for my disease.

16.  Something that I never thought I could do with my illness that I did: was be able to travel.

17.  The commercials about my illness: do not exist.

18.  Something I really miss doing before I was diagnosed is: Spending time outdoors in the sun and swimming!

19.  It was really hard to give up: my independence.  There are certain things I just can’t do and have to ask for help.

20.  A new hobby I have taken up since my diagnosis is: Blogging about having lupus!  Also knitting AND painting.  I’m a beginner at both but thoroughly enjoy the creativity and challenge.

21.  If I could have one day of feeling normal again, I would: spend the day at the beach, walking along the shoreline and searching for sea glass.

22.  My illness has taught me: patience and humility.

23.  Want to know a secret?  One thing that people say that gets under my skin is: “You look so good today!  You must be feeling better!”

24.  But I love it when people: ask if they can help, make me laugh, and let me help them when I can.

25.  My favorite motto, scripture, or quote that gets me through tough times is: “When you get to the end of your rope, tie a knot and hang on!”

26.  When someone is diagnosed I like to tell them: You are not alone.

27.  Something that has surprised me about living with an illness is: how many people expect you to carry on as if you had no limitations.

28.  The nicest thing someone has done for me when I wasn’t feeling well was: More things than I can list!  I am blessed with kind, thoughtful and caring family and friends.

29.  I’m involved with Invisible Chronic Illness Awareness Week because: I have systemic lupus and want to raise awareness about not only my disease, but about all invisible and chronic illness.

30.  The fact that you read this list makes me feel: very grateful!  Thank you!

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Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers September 14-18,2009 at www.invisibleillness.com