Tag Archives: Flare-up

The Circle Game

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Good things never last forever.  And bad things come and go too.  I’ve had a steady uneventful four months of relatively good health in the lupus department.  So it shouldn’t come as a shock to me when I see the obvious signs of a lupus flare starting to circle back again.  First it was about the kidney problem.  The nephrologist said I had lost some kidney function, but for now we will simply monitor the situation.  That was good news.  Now, I’m accepting the fact that the vascular rash that is the primary nemesis of my particular brand of lupus has returned.  The familiar cycle of hives on my face is, well, back on my face.  The small vessel vasculitis on my legs is slowly reappearing.  My arms, torso, back and thighs are affected again.  The stinging feeling on my arms and back has returned.

I have no idea why.  It just is what it is.  And the circle game begins again.

I’m diligently taking all my medications.  I get infusions at the hospital every three weeks.  I have a very long and expensive trail of paperwork that my insurance carrier sorts through on a monthly basis.  I’m an insurance underwriter’s nightmare.

So this is when I start trying really, really hard to be Little Miss Pragmatic.  This disease comes and goes in cycles.  It will probably get worse before it gets better.  And I have faith that the vasculitis WILL improve.

One of the most frustrating things about having lupus is accepting the cycles of feeling well and feeling ill.  I’ve had this diagnosis since 1992 and I still manage to get all pissy when I develop flares.  I get all snug and cozy when I get lucky enough to enjoy a pain-free, rash-free stretch of time.  Heck, I even start to feel …. dare I say it …. relatively normal!  And then I get blindsided when my autoimmune system starts to go haywire.  Again.  And again.

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For now, I will start back up chanting my “coping with lupus mantra” …..

I will stay out of the sun.

I will wear long sleeves.

I will not get overheated.

I will try to avoid stress.  (However, if anybody reading this knows a sure-fire way HOW to do this, please get in touch.)

I will tell myself that even though I may not look the way I want to, I’m still the same person on the inside.

I will rely on the strength of my faith, family and friends.

I will continue to pray for a cure.

I will tell myself that I am not my disease.

I will remember that living with lupus is a circle game.

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!

World Lupus Day

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May is Lupus Awareness Month.  May 10 is World Lupus Dayworldlupusday.

A few days ago, I started experiencing the all-too-familiar signs of a lupus flare ramping up.  My joints started aching, and I started having hives around my hairline and neck.  Sure enough, I woke up with my skin feeling like it was sunburned.  When I got out of bed, I noticed my thighs were covered with red blotches.  My back and arms were red and lumpy.  My feet and shins had new vasculitis lesions.  I was covered in sweat and running a low grade fever.

There’s nothing I can do about this flare.  I just have to deal with it and hope it doesn’t get worse like last year.  I’ve blown through all the pharmaceutical options to treat lupus.  My insurance carrier is reviewing a “second level” appeal from my doctor for IVIG therapy.  It is the only therapy that works for me.  If this second appeal is denied, I will be out of luck.

Did you know that in the last 50 years, there have been no new drugs developed specifically to fight lupus?  Currently, the only drugs on the market used to specifically treat lupus are Plaquenil, prednisone and aspirin.  How pathetic is that?  Instead, doctors have had to use “off label” medications like chemotherapy and other immune suppressors to fight lupus. All have toxic side effects.  Sometimes I don’t know if the drugs are worse than the disease itself.

The video  below is entitled  Faces of Lupus. Pray for a cure.

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.

The Spoon Theory

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I need service for 18-20

I need service for 18-20

If you have not read Christine Miserandino’s story, The Spoon Theory, you’re missing out on a wonderful analogy about what it’s like to live with sickness or disability.  Take a minute and click on the link above to read.  I guarantee that even if you don’t personally relate to this story, you probably know someone who does.  It’s worth passing on.

As the story goes, a young woman with lupus has lunch with a good friend who asks what it feels like, not physically, but to live with lupus?   To answer as best she can, the author grabs 12 spoons to illustrate how the limitations of her illness force her to make difficult and challenging choices every day.  You see, healthy people don’t necessarily need to consciously make decisions about daily minutiae.  However, sick people do. The friend with lupus uses the spoons as tangible examples of the daily limit of choices she’s stuck with.

Now for the reality check.

If I use 12 spoons a day  as the author does, I’m totally screwed.  I tried to break down my own personal spoon usage and this is what I came up with for a typical day in the life of Me – Little Miss LupusRanting.  Each number represents one spoon, except for work (work gets 2 spoons).

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1.     Get up out of bed, (assuming I had the recommended 8-10 hours sleep which should be mandatory for anyone that has lupus) and take medicine on the nightstand.  (If I get less than 8 hours sleep, deduct 1 spoon.)

2.     Take a shower.

3.     Get dressed (including shoes).

4.     Dry hair and put on makeup.

5.     Breakfast.

6.     Feed the cats.

7.     Drive to work.

8.     Work an 8 hour day (at least).

9.      Drive home.

10.   Fix dinner.

11.    Feed cats (again).

12.    Clean up dinner mess.

13.    Kitty Litter cleanup.

14.    Take trash (including kitty litter) to dumpster outside.

Notice that I’m not even close to accomplishing the stuff listed below and I’m already over the 12-spoon limit.  I’m in deep doo-doo with Spoon-Theory Noncompliance.

What do you mean, I've run out of Spoons???

What??? No more Spoons???

15.     Gather one basket of laundry (clothes, sheets, towels, whites, darks, etc) and schlep downstairs to wash.

16.     Relax (read a book, watch tv, play on computer).  One spoon each.

17.     Go downstairs and move laundry load to dryer.

woman carrying clothes

18.     Unload laundry, take upstairs, sort and put away.

19.     Get ready for bed (wash face, brush teeth).

20.     Before bedtime, make a grocery list and “to do” list for the week.

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This list barely covers the basics.  There’s much more to be done, perhaps not in a single day, but necessary, such as:

21.     Grocery shopping.

22.     Bi-monthly pilgrimages to the pharmacy.

23.     Doctor appointments.

24.     Writing (blogging).

Ya'll think 3-4 spoons for this one?

Ya'll think 3-4 spoons for this one?

25.     Facebook(ing)

26.      Exercising (including just walking)

27.     Vacuuming.

28.      Shopping, like at Target or Lowes.

29.      Gardening, weather permitting.

30.      Singing (2 spoons if playing guitar).

31.       Painting (acrylics).

Dude ... Where's my spoons??

Dude ... Where's my spoons??

32.      Paying bills.

33.      Manicure/pedicure.

34.      Hair appointment.

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Okay, the 12 Spoon A Day Analogy doesn’t necessarily mean a person can have only 12 a day.  How about increasing the magic number to 18?

I got a fever.  And the only prescription is MORE SPOONS!

I got a fever. And the only prescription is MORE SPOONS!

I need more.   Yeah,  I’m so totally screwed.  But I can adapt.  Actually, anybody that lives with a chronic illness gets pretty good at adjusting and adapting.

If you’ve been kind enough to read my posts, you’ll notice a range of topics.  Sometimes silly, sometimes scary, I enjoy writing about whatever is uppermost on my mind.  Of course, lupus is at the center of it all.  And living with a limited number of spoons is my daily challenge.

Sometimes I think that if I can just hang in there until the weekend … until Saturday morning and Sunday morning, I’ll have time to gather the strength for the next week.  I can sleep in, reclaim those mornings at my leisure and indulge in something, anything, that isn’t taxing or difficult.  Now, more than ever, it’s important to  relax not only my body but my mind.   If I take on household chores on Saturday, followed by a trip to the grocery store and dinner with a friend followed by a movie, I know with absolute certainty that I’ll have a devil of a time trying to get out of bed on Sunday morning.  I’ll not be able to walk without pain.  I’ll not have access to spoons until later in the afternoon.  If I work on Monday from 7:30 am until 6:00 pm, there will be no spoons left to go to the grocery store on my way home.  I can safely enjoy one or two nights a week with friends or family (even better if they come to my house), but inevitably, the laundry won’t get done or the floors will not get cleaned.  Newton’s third law of motion said it best.  “To every action, there is an equal and opposite reaction.”  Aside from being brilliant, I wonder if he too had lupus?  🙂  Nah.  Probably not.

In the Spoon Theory story, the author always sets one spoon aside.  I try to hold on to one or two, just in case.  So if you get one of mine, consider yourself very, very lucky.  And if you feel guilty about getting my last spoon of the day, help yourself to the bath towels that need to be folded and put away.  Take out the trash.  It’s all good!     🙂

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.