Category Archives: Fear

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.

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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.

Lupus Warrior

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knight-4I’ve been preparing for a battle.  And I’m now ready to charge full speed into the messy underbelly of the healthcare industry.  I haven’t posted much this month but I’ve been very busy dealing with new health issues.

I’m in the process of writing directly to my insurance carrier, requesting an appeal of their decision that denied treatment for systemic lupus with intravenous immoglobulin (IVIG).  Last year, I had 3 rounds of IVIG with total remission.   This stuff is expensive (about $15,000.00 per infusion), so obviously they don’t want to shell out that kind of money on a regular basis.  Unfortunately for me, this is the only treatment option left.  All other medications have failed.

I’m sick of their bullshit denials.  This means war!

I saw my doctor a few weeks ago.  A new rash  developed on my arms, legs and chest.  It’s red, raised and bumpy on my torso, and flat on my extremities.  It’s actually layered on top of the recurrent SCLE rash that flared up in January.  The January rash was fading somewhat and then this new one took its place.  My doctor told me this new rash is small vessel vasculitis.  Currently it’s affecting my skin but he said it can progress to the kidneys, eyes and brain. I have to watch out for areas of the skin that may ulcerate.  Left untreated the skin could become gangrenous.

Fortunately it’s not summertime … yet.  Hot and humid weather makes this stuff worse.  My clothes cover most of it and even though it’s on my forearms and neck, it’s not so bad.  Makeup covers the hives on my face.  Then again, maybe I’m just used to looking at it.

The rash is everywhere on my body, but this photo pf my leg shows both types of lesions.  Some are red, flat and carpet-like.  It feels like a sunburn and is hot to the touch.

img_03912The vasculitis is small, round and dark … about the size of an eraser head.  It hurts but does not feel like a sunburn.

That’s why I’m fighting.

I’m beginning by writing the insurance company a letter.  I’m sending them photos of my skin like the one you see here, as well as others that are too gross to post.  I’m gathering published data from the National Institute of Health with evidence of  clinical trials of IVIG on patients that have systemic lupus and small vessel vasculitis and have gone into remission.  I’m also contacting the US manufacturers of IVIG.  Parmaceutical companies are interested in working with people who seek unconventional treatment (like one of their products) that has been denied by insurance carriers.  To some people, Michael Moore is a total crackpot.  When it comes to health insurance, you should watch his movie, Sicko.  His illustration of the health industry in the United States is spot on.

I’m not waiting for my kidneys to be destroyed.  I’m not waiting to go blind.  I’m not waiting to have seizures.  Nobody at the insurance company is going to cave in and give me the medical treatment I need.  I’ll have to fight for it.

Bring it on.  I’m ready.

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.

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.