Tag Archives: Fear

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.

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.

Closer To Fine

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Medical setbacks are commonplace for those of us with chronic autoimmune disorders.  I have lupus and my life is often derailed with flare-ups from this disease.  Lupus affects millions of people.  My story is not unique.

The last couple weeks have been hell for me with a recent flare affecting my skin and the small vessels in my legs.   “Mind over matter” doesn’t work for me when it comes to pain.  I feel disfigured, vunerable and isolated.  Friends and family can be thoughtful and supportive when  lupus attacks, but I don’t expect them to really understand.  I’ve screamed and cried until I could hardly breathe.  I totally avoided going outside.  I chased down a truckload of Xanax with a couple bottles of wine.  I researched all the current criteria for SSI disability and was pissed because I actually qualify.  I spent sleepless nights watching inane movies or trying to read a book.  I called in sick from work and sat in bed for 13 hours.  Every time I looked in the mirror I was disgusted with my entire body.  The phone hardly rang, so I was mad about that.  And when a few brave souls did call to talk, I spewed self-indulgent diatribes of hopeless bullshit at them.  Lately, the glass has not been half full or half empty.  I smashed it on the floor into a thousand tiny pieces.  Literally.  Except it was a plate.

This is what lupus does.  It’s ugly and angry and frustrating and sometimes unrelenting.  This is the nasty underbelly of this chronic, incurable, insatiable disease.  It can attack the brain, the heart, the lungs, the kidneys, the skin, and everything in between and nobody knows why.

How are things now?  I’m able to pull my prednisone-bloated body together and go back to work.   I can write about how I feel.  In the movie A Beautiful Mind , John Nash struggles to ignore the delusional people that haunt him throughout his life.   In my recent flare with lupus, I am trying to ignore the voices of despair and anger in my head.  To that end, I’ve been able to spend some quality time with a handful of people I trust.  With them, I don’t feel so ugly or limited.

I continue to look for sanctuary, or inner peace, or spiritual guidance, or comfort, or whatever you would call it.  Maybe there isn’t a word for what I’m seeking when I feel bad.  I really don’t know.   Somehow, I feel a little better.  Just a little.  People often describe their life journey as a landscape of hills and valleys on a map.  Lupus appears in my mind’s eye as a series of crooked roads going nowhere.  Either way, I’ve had enough of the screaming and angst and sleepless nights.  I don’t want to look at the map right now; the hills and valleys and roads are just too much to deal with.  For  now, I want quiet time without tears and heartache.

There’s a song by Indigo Girls that I like a lot.  Aptly, it’s entitled Closer To Fine. It speaks to how I currently view the battle between my spirit and my disease.

I’m trying to tell you something about  my life

Maybe give me insight between black and white

And the best thing you’ve ever done for me

Is to help me take my life less seriously

It’s only life after all …..

Well darkness has a hunger that’s insatiable

And lightness has a call that’s hard to hear

I wrap my fear around me like a blanket

I sailed my ship of safety till I sank it

I’m crawling on your shores …..

I went to the doctor, I went to the mountains

I looked to the children, I drank from the fountains

There’s more than one answer to these questions

Pointing me in a crooked line

And the less I seek my source for some definitive

The closer I am to fine …..

Just Hook Me Up

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Ain't it a beauty?

Ain't it a beauty?

Ahhh … the All-Knowing US Health Insurance Industry.  The bridge troll of health care. The billion dollar entity that we pay for health insurance coverage.   Yes sir, they’ll gladly accept our premium checks just in time to turn around and say “Sorry, we won’t pay for that particular treatment, surgery, procedure or medication.”

Bless their hearts.

Last week, I checked in with my lupus doctor.  He wants to continue the immunoglobulin infusions that I started in August.  The infusions are working and my autoantibodies are binding to the immunoglobulin instead of my connective tissues … kinda like a bait and switch technique.

But usually there’s always a catch, and this one has to do with my insurance coverage.  Apparently the insurance carrier won’t cover this treatment.  They will, however, cover treatment for plasmapheresis, or plasma exchange.  I’m gonna get myself hooked up to what looks kind of like a dialysis machine that will remove my my not-so-great plasma and replace it with filtered healthy plasma.  I get to go to the hospital for this and unfortunately won’t be able to stroll around with an IV poll.  I also get to do this about 3-4 times over the next month or so.  For this, I’m forced to lay in a bed for 6 hours.  And of course, this procedure has more risks of complications.  This time, I get to have a needle in my arm AND my leg.

Gives new meaning to the phrase “I’d give my arm and a leg for a ___________.”

At the moment, I think I’d like to finish that sentence with “a stiff drink.”

What would YOU give an arm and a leg for?

Let Me Know If You Need Anything

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I hear that a lot. I also hear “Give Me A Call If You Need Anything”. (Same thing.) There’s also “If You Want Somebody To Go With You To The Doctor, Etc I’ll Go Along With You”, followed by “But Not Next Week Because I Can’t.” I don’t want to appear ungrateful but it would be nice if people would just help without telling me to ask them first.

Truth be told, there are times when it’s nearly impossible for me to ask for help … of any kind … when I need it on a regular basis. Asking once in a while is okay but I’m uncomfortable calling people up on a semi-regular basis saying “I feel like crap and need you to go to the grocery store for me because the lupus is acting up and I can’t be in florescent light.” It’s easier to just order groceries on line and pay the delivery fee. Doctor visits are stressful because I have stupid lupus brain-fog. It’s hard to recall what the doctor recommended, let alone what I said. Someday I’ll start bringing a small tape recorder along to get the facts straight.

Working full time means I schedule doctor appointments around my job. With years of practice I’ve learned how to hold the bad news from the appointment in check until I get home, where it’s safe to be frightened or angry or frustrated. Sometimes when I walk through the door, the cats look at me like I’m possessed. Maybe they actually see feelings swirling around my body, like Jupiter’s rings.

I used to think I was Superwoman. I had a full-time job and two part-time jobs to make ends meet. I didn’t have all her superpowers, but I sang every week and went to rehearsals every Monday night. I did fun stuff with friends. The best part during those years was raising an amazing son. We’d spend time at the park and the swimming pool, explore the botanical gardens or just sit in the back yard and look at the bugs under rocks. We’d visit family for every celebration we were invited to. I’d cook and send dinners to friends when they were sick. I’d help them clean their houses, decorate for holidays, and simply be there. I didn’t ask them if they needed my help because I knew they did. That was my normal. But having lupus forced me to redefine normal.

Lupus also forced me inside to avoid the sun. Lupus sucked all the energy out of my muscles leaving me aching and uncharacteristically exhausted. Lupus denied my freedom in small subtle increments over time. But I am resilient. I persevere. Having lupus is a daily battle with isolation, because if you don’t have this disease, there’s no way you’re capable of understanding how it wears you down. But I try to turn lemons into lemonade. I learned to enjoy solitude, writing, painting, reading, entertaining for good friends and sitting outside on patios … at night. Armed with bug spray in the summer. I go shopping at Target wearing sunblock. When I’m lucky I have moments of great peace and humble appreciation for the life God has given me. I thank Him for the strength to stay the course. And I firmly believe that through adversity, God gives us grace to learn the life lesson before us, if our hearts are open. I am not my disease. I count my blessings and try to pay it forward. Then the next lupus flare hits and knocks me down.

And once again, lupus is knocking me down. Crap.

I’m beginning a series of infusions, IVIG to be exact, starting later this week. Hopefully, IVIG will quiet down my immune system, which lately has been a stubborn little devil that messes with my skin, my central nervous system and my muscles. Hopefully I’ll know more about what to expect at the hospital. Outpatient … that’s good. I’m scared about having this treatment for many reasons! The most obvious reason is that I’ll be in the hospital for 6 hours with a big needle in my arm. I’m not afraid of needles, but this is something completely foreign to me. I’m getting a total of 9 treatments, for now. If my veins won’t hold up, I’ll get a PICC line. Blech! What if I can’t tolerate the medicine or have an allergic reaction? What if I catch some icky virus floating around in a hospital full of sick people? My immune system is already compromised. My plan is to read a book during the infusions. But what if I can’t read because the needle leaves only one arm to hold the book and turn the pages? But the biggest apprehension? Going through this alone. Sorry, but the 10-year-old girl inside me with the ponytails is screaming bloody murder and having a major fit. She’s very frightened and doesn’t want to be left alone.

Yes, my friends and family are just a phone call away. I’ll get through this, and so will my 10-year-old alter ego. And if I need anything I’ll let you know. I just wish I didn’t have to ask.