Category Archives: Loss

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.

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

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 When I Thought Things Were Better …

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… my rash re-appeared last week.  Head to toe.  Most of my face, the palms of my hands and the soles of my feet are spared.  For now.  It looks like a sunburn, but it’s SCLE.  And it’s very, very photosensitive.  It feels like a sunburn.  It’s painful, too.   Like pins and needles.

In general, it feels like having a bad sunburn and laying on a bed of nails.

The doctor told me that the ONLY treatment that will work is the immunoglobulin infusions.  However, my health insurance carrier and the Federal Drug Administration have ruled that IVIG treatment for subacute cutaneous lupus is considered “experimental” and won’t authorize it.  If I had kidney failure, or seizures, or pleurisy or pericarditis, maybe some other treatment would work.

The doctor also told me that plasma exchange isn’t a viable option.  I’ve run the course of every pharmaceutical treatment available for lupus, with only temporary success.  Did you know what word is used for patients who fail medications?  They’re called nonresponders.  Yep.  That’s me.  A nonresponder.  Unless the insurance carrier will appeal their decision, I’m basically out of luck.  There are no other treatment options available.

Last year I had this rash for 7 months.  It was awful.  Last year I had IVIG treatment and the rash went away.  It went away for three months.  Just three months.  I have absolutely no idea how long this rash will last and what it may or may not do.  They say it’s just affecting my skin.  Just my skin.  As if that’s not a big deal.

I’m trying to sort this out in my head.  I’ve been fighting with lupus for over 16 years and never thought I’d run out of treatment options but for now, I guess I have.  I should be grateful this isn’t a fatal condition … it’s just painful and disfiguring.  I don’t want to go out in public.  I have an insane headache.  I miss my son and wish he could come home for a while, even though I know he can’t do anything about this.   I’m angry and afraid.  At some point I know I will pick myself up and dust myself off and get on with living  my life the best way I can.  What other choice do I have?

For now, I’m staying inside.

Through The Eyes of My Father

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His eyes were light blue, filled with confidence and intelligence.  It was impossible to look at those eyes and lie to him because he could see right through you to the truth.  He would often hold you with his gaze and speak to you in a way that made you feel like the only person in the room.   My father was one of those people who even in life, seemed larger than life.  He had a quiet confidence that was never confused with arrogance.  Standing tall at six feet, he walked with his shoulders back and his chin up.

My father taught by example how to look the world with an open heart.  He encouraged us to learn, to travel, to read and be faithful.  He was without fear.  He was without pretense or vanity.  He would be the first to tell you he wasn’t perfect.  Yet, he was committed to his family and my sister, brothers and mother knew we were the center of his life.  He loved us well.

My father died years before my big lupus flare-ups began.  In some ways, I’m thankful he didn’t have to witness my health problems.  I’ve known many parents who had no choice but to watch their children struggle with critical illness and death.  I can’t imagine their pain.

My father lived for 19 days after he had a stroke in the spring of 1998.  He was awake and alert for several hours before the bleeding in his brain rendered him unconscious.  There was no fear in his eyes when the ambulance came to the house.  There was no fear in his eyes when my son and I arrived at the hospital.  My father accepted what was happening with a grain of salt.  His eyes could not lie.  He looked at us with love, knowing his fate, yet reassuring us that he would be just fine.  He smiled with us until he was too tired to stay awake.  Through the eyes of my father, I learned how to die with grace.

When I see the world through the eyes of my father, I know I will be strong.

When I see the world through the eyes of my father, I embrace life without fear.

When I see the world through the eyes of my father, lupus cannot claim my heart or soul.

Is This Really My Life?

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Life can seem seriously warped and ridiculous when you have a chronic illness, like lupus.  I often feel like I’m swimming against the current, trying to make it to … wherever.

Most people go through their day doing whatever they do because it’s just a regular day.  I remember what that was like.  I haven’t had a “regular day” in years.  Lately, I dread waking up in the morning because I never know if the day is going to be physically and mentally challenging.  Usually it’s both but there’s always that chance it won’t be either.

I’m not talking about life as a rocket scientist.   I’m referring to the basic stuff, such as a quick stop to the grocery store because I can’t be over-exposed to fluorescent light.  Or accomplishing the difficult tasks at work in the morning before the headache, vertigo and eye strain starts slowing me down.  Or having a discussion while I’m in a lupus brain fog and trying to figure out why I said “apple” when I meant to say “telephone.”  This week my hips and ankles hurt like hell.  Last week, I had a low grade fever almost every day.  I’m not sure how many loads of laundry I can do tonight.  Why?  Because it’s painful to walk up and down 3 flights of stairs every hour when you’re dizzy and carrying a basket of clothes.  I can’t manage to be optimistic and upbeat lately.  As I said, it’s hard to swim against the current.  So I get discouraged with all this ridiculousness and find myself thinking “Is this really my life?”

I’m hardly a senior citizen but I often feel like a disabled old lady.  I don’t actually look disabled and that’s half the problem.  There’s no sign around my neck that says “Watch Out – This Woman Has Lupus.” When I look in the mirror it’s hard to believe I’m looking at me.  Who is this woman with thin and brittle hair that’s constantly falling out?  Good thing she bought a wig.  Her skin is paper thin from taking steroids all these years.  She has hives on her face again.   And look at those bruises on her arm.  Who hit her?  Did she fall?  Too bad she’s gained weight because of the medicine she’s on.

Will I be strong enough to scrape the ice and snow off my car this winter?  Will the glare from snow on the ground trigger another photosensitive rash?  Will I have the strength to work 40 hours a week?  Will I be able to be a steadfast and reliable friend, sister, mother, to those who are important in my life?

A Good Hair Day

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Yeah, I look just like her

I bought a wig last week and here’s why:

1.     I was tired of watching my hair fall out, which is really depressing.

2.     Good hair days are preferable to bad hair days.

3.     My hair won’t frizz up when it gets wet.

4.     Don’t have to spend my money at the beauty salon for now.

5.     No need for hats this winter.  The wig will keep my head warm.

6.    Now I can dress up as Sarah Palin for Halloween.  (Plus, I have bangs just like her!)

7.     The wig looks pretty good, once I got over my personal trauma of hair loss.  And don’t give me any nonsense about how nowadays, everybody’s getting cute wigs …. because it’s not true.

8.     I don’t have to style it.  I don’t have to color up the gray hairs.  And I don’t have to wash it every day.

9.     I have two cats.  Between them shedding and me shedding, I was constantly cleaning the furniture and vaccuming.  Now I can go back to blaming them for all the fuzzballs in my house.  As if they care.

10.   Sometimes, you got to just do what you got to do.

Deciding to shop for a wig was not difficult.  Maybe that’s because I like to shop for just about anything.   My Wig Shoppe maven, Ruth, was as sweet as pie.  She’s been a stylist for over 30 years and once lost her hair to chemotherapy.  Eventually it grew back.  Ruth brought her personal experience to the workplace, spreading hope and a little bit of pixie dust to her customers, including me.

My mother had a progressive case of hair loss as an adult.  I often took her to the very same wig salon.  My memories associated with those experiences were often sad.  I think she was self conscious and depressed about the whole thing, and didn’t have friends with the same dilemma.  She could find humor in just about anything.  Mom would laugh and make jokes about her wig,  which somehow made her feel better.  But just under the surface of her brave face, you could see the sadness in her eyes.  And honestly, at the time I had no clue what losing your hair felt like.

I do now.  I miss my mom and wish I could talk with her.

So it’s been about a week since my trip to the wig shop.  Of course, I had my crying spells.  I finally understood my mother’s depression over losing her hair. I felt sorry for myself and had quite the pity party.  For the sake of my health, however, I decided that if I’m going to get stressed out, I’ll save my worries for something really awful, like Christmas shopping, or kidney failure, or the basement flooding.

Adjusting to hair loss is a process that takes time.  The main reason I decided to write about a topic this personal was to pay it forward for somebody that may need a little reassurance like my mom did.

If you  … or someone you know … has lost their hair, take a few minutes and reply to this post with your story.  I believe that by sharing our experiences, we grow stronger.