Identity Theft Strikes Again

Easter Sunday.

A day to bring out new bonnets, handbags, and shoes.   A day to wear dainty pinks, yellows,and  greens.  The day, of all days, to attend church, for though we can no longer boast of a 5th Avenue Easter Parade, attendance at church is the closest thing we humans have to showing off our finery.

Everyone, that is, except me.

Now why I did not choose to stay at home on this particular Sunday is a mystery to me.  I should have stayed cocooned in my bed as I had on many a prior Sunday throughout the past three months.  I was still recovering from those strange anemias after all.  I think, perhaps, that I was thinking of the reason for the season, but that was clearly not enough.   You see, if I were going to church this going needed to be preceded by taking a shower.  And if I needed to spend my allotted three minutes in a tepid shower, this needed to be followed by a minimum of 30 minutes recovering in bed.   As a result, I ran short of preparation time in the clothing department. And no amount of time was going to help me in the mirror department.  I hastily dressed in a black and white outfit that I didn't feel comfortable in, but it was the last one I had tried on when the music stopped playing in the "musical outfits" game.

I had clearly forgotten where I was going to attend church on that fine Easter Sunday.  I had chosen to attend Mass with my husband - not at my own parish church -  but at a local monastery affiliated with an enormously expensive all-boys prep school.  "No one will know me there," I thought. No one will see me with my prednisone chipmunk cheeks, my curly, dried-out hair, and half-closed swollen eyelids.  And while that may be true on any given Sunday, no so on Easter Sunday.  Not so.  For the church was filled with alumni and parents of students of that enormously expensive school:  Men and boys alike in their ubiquitous blue blazers.  Skinny mothers in their Lily Pulitzer and Vineyard Vine clothes.  My own brothers had attended that school when growing up.  So many people I know have children who now attend that school.  Why did I ever think I was going to be anonymous?

But in actuality, I was indeed anonymous.  No one DID know me, but I certainly knew them.  The sad fact is that two separate women who I used to see quite often in my afore-titled role as "Church Lady" looked right at me, did not recognize me, and left me smiling at them like some sort of fool who greets total strangers on Easter Sunday.

Identity theft had stuck again.

Image, then, my utter agony as I glanced at those around me - dolled up and prepped out to the ultimate max as I sat in my black and white polka dots.  Yes, sat;  for I did not possess strength enough to even stand up at the required times.  Oh how I plotted and planned my exit strategy in case I happened to run into another acquaintance on the way out.  I sent my husband for the getaway car and left the building before the first line of "Jesus Christ Is Risen Today" was out of the cantor's mouth.

How far I had come from the true reason for the day. . .

What Kind of Idiot?

I just want to tell you that things have not been going as planned lately. It seems that the cosmos has things in store for me that I wouldn't have chosen for myself.

Let me reassure you that I don't have blue hair (currently) but I do have a hair story.  Silly me thought that I could go and pick up my prescriptions before getting my hair colored the other day.  Plus the appointment was at 1:30.  Dicey time for me.  Approaching the daily melt down when I need to be near my bed. I was sitting in the chair, hair full of dye when it descended:  The Walking Dead Wipeout.   I ended up begging the receptionist to go and rip my hairdresser back from her lunch break to wash that wicked stuff out of my hair.  No cut.  No blow-dry. Said yes to the purchase of yet-another no-frizz product.  Like an idiot, I emptied the contents of my wallet, gave it to her, and walked out of that salon.

Idiot.

I have a plant story too.  I have been fascinated with forest bathing and wanted to bring some more plants into my home.   Now plants are about the only thing you can't order online, although I have ordered live bamboo sticks from Amazon.  (And in retrospect I guess I could have called 1-800-FLOWERS and sent a plant to myself.)  But instead I thought, "What kind of idiot can't drive to the adjacent town and go into a green house, pick out a plant and leave?"


What kind of idiot?

 Guess.

I was such a mess in that hot, humid greenhouse I wanted to die. I snatched up a plant so quickly, I don't know its name, whether it needs sun or shade, or how much to water it.  I just know it's green and will exude all sorts of good things into my air.

And I have a tree story too. . .

And a pool story. . .

OH, how is it that I have to readjust my life once again?  Is it truly possible that I can't even do the little things anymore?


Someone bring me back from this!

But I Did Everything Right!

UGH!!!

I did everything right this morning.

Rose around 8:30 a.m., downed my first two morning medications, sat in the shade in my backyard sipping coffee, said my morning prayers, and then meditated with moist compresses on my eyes.  Why, I even stood guard and prevented the dog from pooping in the yard next door!

I returned back inside and - deciding against my usual carb-heavy breakfast - chose to eat fruit instead.  I then took my other six morning meds, started my essential oil diffuser, soaked in a tepid bath filled with epsom salts and essential oils with spa music playing, drank my low-salt-no-sugar-vitamin-and-electrolyte-water, and stood up.

UGH!

Dizzy.  Nauseous.  Disgusted.

What happened to the benefits of being around trees?  The sheer goodness of summer nectarines and strawberries?  The detox of epsom salts?  The good karma connected with the dog poop?

All of it down the drain with the bath water.

Could it have been the second cup of coffee consumed while reveling in the fresh morning air?  The fact that my poor gastritis-ridden stomach cannot handle the ingestion of eight morning meds with just fruit?  Could it be that I truly need my morning bagel for medicinal purposes?

I well remember those days long ago; days when, after working long frantic hours, I would long for a day in bed.  Now I can't do enough to get out of it.

There's always tomorrow I suppose. . .

The Chemo Infusion Center on Ugly Sweater Day

Only me.

This could only happen to me.

Perhaps this is to remind me how lucky I am to have diseases that are chronic, not fatal.   Perhaps it is to at last get me in the Christmas spirit.

Bah Humbug!

All I wanted when I walked in the door was to crawl into a ball and let the benedryl, steroids, and Rituxan drip slowly into me.   To get a pillow and blanket or two from the warmer and hide myself in soulful silence: Meditations on headphones, audio books, and haunting Celtic carols on an iPod. You know, songs like In the Bleak Midwinter.

Instead, here I am in the middle of Cancer Christmas.  Headband horns, Christmas bells, and snowman leggings.  Light-up Rudolph noses and gift-wrap "bow"es.  Santa hats and reindeer mats.  Chemo drips and recipe tips.

 I even got a free lunch.

Hah!

Tell Me God, Do You Crochet?

While driving home from a dentist appointment yesterday - the umpteenth dentist appointment this year, mind you - I began to sneeze.  And as I sneezed, I thought, "Oh Lord, not again!" This is the fourth time this year I've had to get a crown removed in order to rid my mouth of the decay which has crept uninvited underneath the crown.  It is also the second in these aforementioned four times in which I have left the dentists' office sneezing and blowing my nose.

But enough about my sinuses.  Which just happen to be low and desperately in need of a sinus lift; for if I had a sinus lift or two the roots of my teeth would not nestle around them and I perhaps could be a candidate for implants. At the very least I wouldn't walk around with cold symptoms for days after having dental work done.  But enough about my lifts and my implants.

Keep in mind that all of these dental problems are due to the lack of saliva production from Sjogren's Syndrome.  But enough about my spit.

In order to round out my story, I suppose I need to tell you that I was also driving in pain; for my right shoulder has been shouting out in some sort of protest for almost a year, but now it has reach its climax - uniting with my carpal tunnel syndrome to cause me to be in utter agony.   This shoulder, MRI'd last spring and read by two radiologists, seems to have a myriad of things wrong with it:  tendonitis, bursititis, encapsulititis, synovitis, impingement syndrome, and bone spurs. Take your pick.  And this same shoulder has been sent on its way by an orthopedists, neurologist, and rheumatologist (although the rheumatologist gave me an ineffective cortisone shot just one week ago.)  But enough about the the nuts and bolts that loosely keep my together.

Point is. . .  I was thinking about one of my favorite lines in the Psalms which - in my quest to be ever-grateful and oh-so-positive - I try to recite as one of my mantras at least once a day:

I praise you

for I am wonderfully made.

Now that very same Psalm also contains the words which you see up in that graphic at the beginning of this post:  "For you created my inmost being; you knit me together in my mother's womb."  I absolutely love the imagery there.  Think about it:  No nuts and bolts there, but a vision of God patiently knitting away and tenderly placing me in my mother's womb before I was born. Incredible.

But on my way home, between low-sinus sneezes, I started to think about this.   Are we sure God didn't drop a stitch or two during the creation process?  Of me.  I'm thinking solely of me here.

Perhaps he got distracted for a moment or two.

Perhaps the angels were throwing a party and he had to tell them to shush down.

Perhaps two of his disciples were having a tiff.

Perhaps St. Peter needed help deciphering God's writing in the Naughty and Nice book.

But I think that the most likely reason of all is that God perhaps gets bored and crochets some of us.  That's it!  He crocheted me and then placed me in my mother's womb (for we all know I'm somewhat undun!)

But still . . . 

I praise you

for I am wonderfully made!

Drying My Tears - This Book Is My Baby!

I have been writing (and rewriting) this book, Drying My Tears, for close to 18 months, and yesterday I hit the PUBLISH button.  In all honesty it was like sending my only child off to college.  (On second thought, I should liken it to sending an only child off to boarding school as a kindergartner, because by the time my daughters went off to college I practically kicked them out of the house )  How could I possibly send my baby out into that big world and leave her open to criticism and reviews?

Drying My Tears recounts the story of my family's encounters with autoimmune diseases  and shares my experiences with complementary medicine.  It also serves as a sort of intimate journal, for in it, I have been very frank about what it is like to live with autoimmunity.  Did I reveal too much of myself?  Too little? A memoir like this is a funny thing.  It's personal by its very nature.

I believe I may be shivering. . .

Buy It at Amazon! 

Surgically Attached to My Bed

Someone please tell me how this happens.

I went to a wedding.  A simple wedding.  I sat in the passenger seat for a considerable amount of time as my husband drove to another state.   We missed the ceremony itself but arrived in time for the reception. I successfully donned shoes which have never once felt comfortable long enough to wear them out of the house or hotel room.  This was a good sign I thought.  A good day.  I downed a couple of Advil, made sure I took my nerve pain meds and was out the door.

I stood during the cocktail hour for a good ten minutes or so before I had to sit.  Drank a glass of wine (for we all know that wine is the most effective pain killer of all. . . ) Of course I sat through the dinner itself.   And then I danced.  I danced three glorious dances with my husband and beautiful daughters.  Oh how I love to dance!  My legs and ankles told me when I hit my limit and I was okay with that.  At least life gave me a chance to dance once more.

We returned to the hotel and I slept the sleep of the dead.  I slept through the rest of my family going downstairs for breakfast the following morning.  I slept for most of the ride back home.  I slept until 10:20 this morning. I've been awake for two hours and now I need to sleep again.

Immediately

Without delay

How, oh how, did I get surgically attached to that bed?

Will You Still Feed Me?

Remember this post so long ago?


I have been thinking about this for a long time now.  If I have troubles living my day-to-day life now, WHAT THE HECK AM I GOING TO DO WHEN I  GET OLD???,

Can you just imagine me in a nursing home? (Oh, it's going to be a nursing home, people, because Drip Dry - though I love him - is just not the type of guy that would give up his golf game to being a caregiver.  Care taker?  Maybe.  Care giver? No.)  Who would take care of me like I do?  The nurses and aides would be forced to shoot me.  I can see it now. . .

"Oh aide, can you start my humidifier?  And my eye drops, could you put one in each eye?  No, not those prescription ones, the other prescription ones.  Wait, we forgot to scrub my eyelids!  I know we did that this morning, but I need to do it twice a day.  And the goggles, do you have them warmed and ready?  Now set a timer for me.  Never mind Alexa can do that for me.  Alexa, set a timer for 15 minutes.  I hear you sliding out of the room now, missy.  Go on ahead, but don't forget to come back!  I know it's time for my thirteen nightly pills, but I just put these goggles on and my eyelid oil glands will never be right if I take them off now.  The arm splints.  Do you know where I put them?  Get me my prescription toothpaste; I need to brush and then leave it on my teeth for the night so the bacteria don't have a party on the few teeth I have left.  Now can you swab the inside of my mouth?  And my lips, don't forget them.   Do I have water by my side?  The dry mouth spray? Regular eye drops?  Lip balm?  Okay, time for the gel drops.  Remember, once they go in, I can't see another thing.

Wait, which finger, exactly, are you holding up there missy?

Butt Cheeks and Peripheral Neuropathy

I Wish this Were My Butt

This is a bit of a sensitive subject, for after all, I will be speaking about an area of the body that's a tad taboo in polite circles.  It's also about sensitivity in the literal sense - not the figurative sense.  It's about the act of actually feeling, not feelings.  Oh, let me cut to the chase here and tell you it's about my butt cheeks.

Butt cheeks and peripheral neuropathy.

Peripheral neuropathy is a common complication in those with Sjogren's.  The neuropathy can be of the large nerve fiber type (those surrounded by an insulator called the myelin sheath) and/or of the smaller nerves closest to the skin.  At the present time, I have been diagnosed with small fiber neuropathy and am awaiting another test to see if my large fibers are involved or not.

But, whatever its source, this neuropathy is painful.

It sears.  It burns.  It aches. It stings. 

It crawls.  It zaps.  It zings and pings.  

 It is both ice cold and blazing hot, 

predictable is what it's not!.   

 And, despite the nerve pain medication I take to help alleviate it, it has been disrupting my life in ways I can't even explain to you.  I cannot find a shoe or sock that does not hurt to put on my feet except for UGG boots.  (Not particularly appropriate in the summer months.)  I cannot walk more than a block or two.  This neuropathy affects my sleep, for I wake up during the night with my feet stinging and burning throughout the night.  It is with me 24 hours a day; every day.

And it's creeping up on me.

It started on the bottom of my feet and tips of my toes and stayed that way for a few years.  But within the last nine months, it has begun moving at record speed.  Sensitivity in my toes came first, followed by the entire top of my foot.  My ankles and shins got quirky, sending a strange zapping feeling whenever they were touched.  There are patches on each of my knees that are extremely painful to touch; the same is developing on my elbows.  And now, I fear, on my butt cheeks.

Yes, the outside edges of my butt cheeks.

I can tell you right now, that if I ever attempted to kneel with the sensitivity I feel on my knees I would scream in agony.  Sheer agony.  And now a sneaking burning sensation is starting to appear on my buttocks when I sit.  Can you even imagine?

How on earth will I live life without sitting?    For it has been said that sitting (and drinking wine) is what I do best!

Not To Be Dramatic . . .but Sometimes Sjögren's Stinks

You must know by now that I usually attempt to find humor in everyday happenings.  Believe it or not I also try to find joy in life.  But there are days when a gal just has to give in and feel sorry for herself.

I was contemplating going on a trip to Portugal and Spain.  It was an eight-day bus tour.  On and off the bus.  Easy as pie.  Luggage and all accommodations taken care of for you.  Breakfast and dinner included.

But then I went away overnight.  One night.  Oh yes, the sink in the hotel was zenchanting - or maybe even zentastical - but sometimes I wonder if it's worth leaving the house when I have to pay the price the next day.

It began when I couldn't wake up in the hotel.  Had one of those All but Surgically Attached to My Bed fatigues going.  Drip Dry and Trigger were up and talking, went downstairs for breakfast, and came back to the room to still find me unconscious.  Ponzi and Veggie came over, we said our goodbyes, and left for the two hour drive home.  Once home, I took a three hour nap and was back in bed for the night by 9:30 pm.  Then I could not, for the life of me, drag my body out of bed this morning for a 9:00 am appointment.

Right now, it's 5:08 pm, I've put Drip Dry's dinner in the oven with an automatic turn off, and I'm going to bed.  For the night, or a nap, I do not know.  All I know is that I cannot live this life in an upright position for one more moment.

How can this be people?

How could I ever dream of taking an eight day trip when I couldn't even make it through a two hour drive and a brewery tour (which, btw, I didn't even take part in) except to drink the blueberry IPA - and blueberries are full of antioxidants, are they not?

For All Those Interested

I suppose it is finally time I told my story about my illness and hospitalization.

Most anyone suffering from an autoimmune disease should be familiar with the roulette wheel of medications.  Physicians keep prescribing them until they find one that sticks.  The one that works, where you don't suffer from its wide range of side effects.

With Sjogren's Syndrome, these second-line medications are called Disease Modifying Anti-Rheumatics.  They are almost all immunosuppressants and meant to be steroid-sparing agents because, although steroids like prednisone do an excellent job at reducing inflammation (and hence joint pain) long term use has proven to be very harmful to joints like hips and knees.  And so, a little more than a year ago my rheumatologist put me on Methotrexate.  After about three months I developed excruciating headaches and so was switched to another drug, Arava.  After about eight months on Arava, we decided that the extent of my hair loss was just not acceptable.

Enter Imuran.  After a medication break over the holidays, I began taking this new immunosuppressant on January 3rd.  A word of explanation here:  I currently take something like 11 different medications on a daily basis, so I may not be as attentive as a normal person would be when starting a new medication.  I was two weeks into it, had no headaches, and my hair loss had slowed down significantly.  And this new medication had the added benefit of not taxing the medicatee's liver so there were no cautions about alcohol consumption while taking it.  Primo for me!  I scheduled myself for the required bloodwork to be done four weeks after starting the medication and thought no more about it.

I began to feel dizzy on January 18th and took some potassium and magnesium supplements because I had a strange premonition that my electrolytes were out of whack.  But that night I began vomiting and so I thought I somehow acquired a stomach bug.  I woke up with a fever of 101 the next morning and the diarrhea and vomiting became quite bad.  Same too the next day.  Yet everyone seemed to tell me that there was this terrible stomach bug going around which lasted two days.  So even though I couldn't lift my head from the pillow without vomiting, I soldiered on.  Saturday morning I felt somewhat better and was even able to keep my morning meds (including my Imuran) down for the first time.  Soon I felt awful again.

For the life of me I cannot figure out why it took me so long to make a connection between my illness and the Imuran, but at last I realized that this immunosuppressant may be making it harder for me to recover.  I truly felt like hell for the third day in a row and finally decided that I should go to the ER.  By the time I got there, I was barely able to talk.  Once I was evaluated by the triage nurses I was rushed into my ER bay where a resident and a nurse were waiting for me.  I remember them putting me into a hospital gown and then I surrendered myself to their care - aware of the fact that I no longer needed to hold myself together.  Grateful, so grateful to be there.

Things happened rapidly.  Blood was taken.  A thermometer was placed in an area I don't want to mention. Bags of IV fluids - including IV antibiotics - went into both arms.  An abdominal CT scan was performed.  I heard them declare success in bringing my heartrate and temp down.  But my blood pressure seemed to remain a problem.  Next there was discussion about the fact that my nose and lips had turned blue.  And my skin was mottled.

What I didn't know was that I was in a state of septic shock and that my blood pressure was at an all-time-low of 50/30.  My kidneys, liver, circulation, electrolytes, and other systems were all shutting down in order to protect my heart.  My thinking was fuzzy.  My heartrate had been at 184; my poor heart working overtime to try to restore my blood pressure.  The only way to bring up my blood pressure was to insert an additional IV in a vein in my neck which flowed directly to my heart and begin to flood me with vasopressers.  Thank God it worked.

But what had happened?  How had I gotten to this state?  My bloodwork revealed that my platelets were reduced and my white blood cells had all but been wiped out and were at extremely low levels - allowing an infection to enter my bloodstream and induce sepsis.  I was experiencing a rare, but potentially life-threatening, reaction to Imuran.

I have since read the over 50 percent of the people who end up with septic shock do not make it.  I have also read that each hour left untreated increases that mortality rate by 6 percent.  I can't help but wonder just how many hours I had left in me.

Hair Did Our Love Go?

 For years I have cringed as I watched my daughters' hair fall out due to their various autoimmune and rheumatological conditions.  Oh, I know I complain about that "Hair Art" plastered to the shower.  If I recall correctly, even Seinfeld had a stand-up routine based on a stray hair making its way down a shower wall.  And if he could make fun of it, so can I.

But this time I'm not laughing.  This time the hair is mine.  It's mine, but it's no longer mine as I wrap it in a tissue and throw it away.  It's no longer mine as I pick it off of my clothing or sweep it off the bathroom floor.

Oh hair, why can't I glue you back in?  I'm sorry if I have taken you for granted in the past.  I'm sorry if I subject you to blow dryers, sprays, and straighteners; to pony tails, braids, and messy buns.  You weren't messy, mind you, the bun was. It was all my doing!  And I'm sorry for coloring you every four weeks, making you feel unloved in your natural state.

If I could only take back the times in the past when I have declared that it was a Bad Hair Day, I would. You were never bad, hair, it was the day that was bad.  It was always just a bad day.

And I'm especially apologetic for taking this god-awful medicine which has caused you to jump ship and abandon me.  I think it may be poison.  The warning on the package insert says that a woman has to be off of this medicine for SEVEN YEARS before she can attempt to become pregnant!  This medicine stays in your body for that long.  I guess that's one way to reduce the number of Sjogren's sufferers:  Don't allow them to reproduce.

 Oh hair did our love go?

 

 

Dear Kasey

A Letter to the Family Dog (a.k.a. my favorite daughter)

Dear Kasey,

            I know that you and I have had many meaningful conversations though the years, but I’m not sure I ever told you that you owe your very existence to lupus.  Yes, I admit that you would have “existed” without lupus, but we would not have been lucky enough to have you as part of our family.

            “How?” you ask.

            You see, I never thought I was a dog person and certainly never envisioned a big hairy fur-dropping canine living in this little house.  I deemed myself, instead, a cat person for reasons which may not be obvious to you.  I have a personality resembling that of a feline.  I like peace, quiet, and solitude.  I only want to be around humans on my terms – otherwise I just may run away and hide.  I like to sleep, don’t like to go for walks, and find the destruction of mice and other rodents heading my list of priorities.

            So how is it that you came to steal a place in my heart?  How does your presence in this house owe itself to lupus when the very name of this disease stems from the word “lupine” which means having a wolf-like appearance?  Yes, this lovely metaphor comes from the hallmark rash that lupus brings (now more graciously termed the butterfly rash.)  If I had wanted a wolf-like dog I would have adopted a german shepherd, not the likes of you – my beautiful labrador retriever.

            The answer is simple.  You are here because of Megan’s overwhelming yearning for a dog in the midst of a sickness which found me heartbroken.  (Now if she had really had her way, you would have been a St. Bernard, but I wasn’t THAT heartbroken!)  And yes, we had to go through a tragic series of three other canines before you at last came to rest in our home, but I quickly learned that the fourth time is a charm.

            And so, with your leap-frog growth due to doggie years, we have grown old together.   You breezed through your teenage years without so much as doggie prom or needing a “pet-a-cure”.  You would never declare yourself a vegetarian.  You have no need of expensive clothing, boots, or handbags.  In fact, you wouldn’t even dream of setting foot in a mall without sporting a leather harness, and me a pair of dark sunglasses. 

            You, my favorite daughter, have brought joy to a house which has often been saddened by sickness.  Although you took no vows upon joining our family, you have been there for us both in sickness and in health – happy to lay by your adoptive sisters’ side as she lay sick and hurting on a couch.

            And I thank you for that.

                                                                                                                        Signed

your loving mother,

Pain - There I Said It

I was composing a poem the other day.

It wasn't a poem I intended to publish. Ever.  It was sort of a private poem.  Okay, if you simply must know, it was a prayer.  I was composing a poem that I could memorize and say upon waking each morning.  (Proof that you can take the lady out of the church, but you can't take the church out of the lady.) I intended it to be full of gratitude in hopes of helping me to start each morning on a positive note.

And all was going exceedingly well.

Until I attempted to use the word pain.

In fact the exact line was:  Help me to trust that your plan is mighty;
                                        embracing my pain, redemption's reward
                                       When weakness I feel, Lord, let me humbly join to
                                       your lonely passion in one accord.

I know. . .quite lovely isn't it?

All except the use of that one simple word!  I didn't want to use the word pain. I erased it.  I put it back.  I replaced it with suffering.  I put it back.  (Suffering, after all, has too many syllables for that line.) I hemmed.  I hawed.  I felt guilty.  I scratched it out. I put in the word life instead.

What in heaven's name had come over me?

I'll tell you what.    I don't want to be seen as a complainer. .  . a whiner. . .a self-centered-woe-is-me kind of person.  Even in my private prayers to God. Because so many people are suffering with life-threatening illnesses while my disease is just life-changing instead.

And a big part of the change is the "P" word.

Oh, I don't want to use the word, but I live it.

I live in pain and I don't talk about it.

Yes, I live in pain from the moment I wake up in the morning until the moment I wake up twenty-four yours later. (Because, although I sleep, I experience pain throughout the night.  When I roll over. . . when I hobble to the bathroom. . .and when the neuropathy in my feet decides to rear it's painful, ugly head in each and every knuckle of my toes at 4:00 a.m.) Yes, pain is a nocturnal animal.  In fact, it never sleeps.

So what's a another word?  A softer word? A more tolerable word?

Discomfort.

Now discomfort is a whole different animal.  Discomfort is what I feel in my lungs upon waking each morning when I have the sensation they've had the life squeezed out of them.   Discomfort is what I feel in those god-forsaken toes during daylight hours because the inflammation in the nerves has caused the piggy who ate roast beef to pull apart from the piggy who stayed home - causing each of those last three toes to overlap and run away from home, not towards it. In fact, the discomfort is such that - despite the specially ordered shoes I wear - it causes all of my piggies to detest going to the market and opting to stay home instead.  (Do you get the picture? It's some sort of neuritis.)

And discomfort is what I feel from the hallmark symptoms of Sjogren's - dry eyes and dry mouth (Xerophthalmia and Xerostomia respectively.)

Pesky? Troublesome? Difficult?

Yes, all of the above.  But discomfort is almost nuisance-like . . .something I can deal with.   I know these symptoms will be with me for the rest of my life but they can be temporarily relieved through any number of things in my arsenal:  steam. . .water . . .eyedrops . . .lozenges . . .toe alignment socks or flip-flops.

But the "P" word?  My  "P" goes right to the bone and is present with virtually every move I make.  Heels. . .ankles. .  .knees. . . .fingers. . . lower back. .  . and even creeping into my wrists and hips now.

It's pain.  Pure and simple.

And despite the myriad of pills and numerous prescriptions I take around the clock, my pain has gotten worse since the onset of this disease a year ago, not better.

So pain, now, is a fact of my life.  I acknowledge it.  And, as so many others have said before me, I have forgotten what it's like to feel "normal" (a.k.a. pain-free.)

There.  I said it.  Now the word can go back in my prayer.

After all, I'm pretty sure God knew it was there all along. . .

The Dreaded Stool Sample

Now were you aware of the fact that back in the middle ages a sovereign would have a dignitary designated as "Groom of the Stool"?   This particular personage held quite a lofty position because it was his job to deliver the king's daily dump to the royal doctor each morning (I suspect that the other component of his exalted position included holding – and employing – whatever sort of item they used as toilet tissue back then in order to wipe the king’s royal heiney.)  Now after the groom wound his way through the imperial court shouting, “Make way for the Royal Stool!” the physicianwould then dissectsaid stool in an attempt to detect signs of royal disease, dysentery, decay, or other debilitating defects in the deposit which might indicate the king's untimely demise.  If he found none, he then duly decreedthe king fit todo his dutyfor another day.

Long live the King!

Lacking my own personal Groom of the Stool, I was forced to deliver my sample to the laboratory all on my own.  Unlike your average medieval ruler, I was embarrassed by the nature of the collection and thought that no one would want to view the contents of those containers with their naked eye, so I decided to wrap each carefully-cleaned—but specimen-filled cylinder in a pristine paper towel before stuffing all four in a spotless plastic baggie.  When I went to the lab to deliver my – errr, . . .deposit – the self-righteous receptionist then proceeded to ask me, “Do you have two greens, a purple and a yellow?  Turns out this particular type of specimen must share the same mysterious cap color coding system as blood samples.

How was I to know?  I no more looked at the caps of those little cylinders as I filled them than a father would glance on his daughter’s adhesive breast forms!

“I’m not exactly sure” I stammered.   And that arrogant receptionist then sat and stared at me until I unwrapped all four tubes of shame before the entire waiting room;  indeed confirming that I had two greens, a purple and a yellow in my possession.  (“She wrapped them in paper towels!” I heard her chuckle to the coworker beside her.)

 But would she accept my specimens over that front desk she so indignantly oversaw?   Of course not! Had she been forced to handle my carefully wrapped present, she would have been down on her knees thanking me for my cleanliness.  Instead, I had to act as my own Groom of the Stool and walk it down the hall in order to humbly drop my tubes in specially marked specimen box so that the royal doctors could decree that the cause of my pain and diarrhea was not an errant parasite or rampart bacteria.

So long live. . . 

 





 

What Are those Ants Sniffing?

Tell me, do those laboratory technicians wince when they have to handle my urine sample?  Who could refrain?   Do you know that the shade and density of the urine is then noted on the laboratory results?   I pity the person whose job it is to determine that!  Do they hold it up against a paint swatch nabbed from a local hardware store?

But it could be worse. 

Another lesson in history here:  Long before any of our modern urine tests were developed, physicians actually tasted the urine (yuck!) of their patients, employing their own taste buds to see if it indicated signs of sweetness which meant that the patient would be diagnosed with what they then called the “Sugar Sickness” (now known as diabetes.)   In fact, the discovery of Type One Diabetes (an autoimmune disease) dates back to 1500 B.C.E. in Egypt.  Physicians in India at around the same time discovered that the urine in certain sick individuals would attract ants.  Yes, ants!

I suppose I'm thankful 

it didn't attract mice. . .

 

 

Honor Thy Body

In my attempt to deal with the life change this autoimmunity has brought, I believe I may have at last discovered something.

My body doesn't hate me.

When first diagnosed with Sjogren's Syndrome, I became aware of the fact - I suppose every autoimmuner does at sometime - that the "fighter" cells in my body (meant to kill viruses and intruders) had turned upon my healthy tissue instead.  It felt somewhat akin to employing a security guard, only to have him turn his gun on you and hold you hostage instead.

I felt betrayed. unnatural, abnormal.

Yet in my second Tai Chi class, as I muttered something about "my stupid ankle" my instructor stopped the class to remind us that we need to be thankful for all our bodies do for us each day.  Thankful?  I should be thankful?

Let's give it time, my friends.  Time.

Feeling Sabulous . . . a letter to The Sandman

Dear Mr. Sandman,

I have one simple question for you:  Are you a work-a-holic? 

 The reason I ask is that something seems to have gone haywire in our relationship.  In fact, you are quite overdoing my nightly sanding.


Now I know that some people think you're just a mythical figure . . . sneaking along at night to sprinkle sand in the eyes of little children to make them sleepy . . . but I believe in you.  In fact I'm quite sure you exist because I feel the results of your gritty mischief each and every night.  And I don't know how to break this to you . . . because the primary task on your job description is to make folks sleepy . . . but, with the constant fatigue I already feel, no enhancement is needed on that front.


Now, Sir,  it wouldn't be so bad if you just stopped at my eyes.    Why do you feel it your duty to move your desert-like presence on to my mouth, throat, lungs, nose and sinuses - causing me to wake up like I've been through the wringer?

And as to the dreams you're supposed to bring????  Who, in their right mind, could dream pleasant dreams when they're practically gasping for air all night?  I'm convinced your over-zealousness in the sanding department is causing me to wake each night - the victim of horrible nightmares and panic.

Please excuse any personal insult, Mr. Sandman, but from your picture up there you appear to have achieved a ripe old age.   And perchance you have grown a wee bit confused or hard of hearing in your golden years.  And I ask you:  Have you mistaken the word fabulous for sabulous?  Because I used to feel fabulous upon waking in the morning, but instead I now feel sabulous (that's right, old Sandy, it's a real word which means sandy or gritty.)

And I miss the days of feeling fabulous.

So, without further ado, I am ordering you to skip right over my bed tonight - and every night henceforth.  Consider this fair notice that I am barring my windows and doors against you and going to bed in full combat gear.  I have sprayed and swabbed the inside of my mouth, moisturized my eyes, jelled up my lids, and neti-potted my sinuses.  I have even employed my cool mist humidifier so that if you even dare to show yourself in my room you will be vaporized in no time flat.

Please don't take this personally, Mr. Sandman.  You know I hate to break our long-standing relationship, but it's really much better for both of us.  I get a reprieve from your over-sanding; and you get a chance to rest.

Yes, rest.  Take a vacation.  Relax and ride the waves on the beach where you gather your sand.   Or better yet, retire altogether and spend the rest of your days in the Sahara.

Leave all that nightly flitting to the tooth fairy.  She's much younger than you are.

And she brings money. . .

Let's face it. . .if she took your job, Mr. Sandman, I'd be a millionaire by now!

Looking Through the Sjogren's Lens

My thoughts today are about my own personal struggle when it comes to assessing my health problems.

Now, before the cascade of Sjogren's symptoms hit me this past Spring, I was the consummate-doctor-avoider.  I hadn't had a mamo or gynecological check-up in ten years. . . had never dared to submit to the horrors of a colonoscopy even though my father contracted colon cancer at age 54 . . . and switched dentists every two years because I always was ashamed that I hadn't followed up with the last one.  I suffered from fear of the doctor in a BIG way and my anxiety regarding doctor's offices totally outweighed my innate sense of responsibility.  The only responsible thing I did was to visit my primary care physician (when they refused to refill prescriptions) to get my hypertension, cholesterol, and Xanax scripts renewed - the last of, without which, I couldn't even dream of entering a doctor's office.

The other responsible thing I did way back in 2010 was ask my primary to run an ANA on me because my daughters all struggled with rheumatological and autoimmune issues.  Of course it was positive.  I then visited a rheumatologist who did a full lupus panel and found the Sjogren's antibody. But because I didn't feel I had the symptoms (and the nurse who insisted on weighing me was the neighbor of another woman I knew and - in my paranoia - could just image her whispering my over-weight over her back fence. . . ) well, I never returned and didn't get treatment.

Until it hit.

And hit with a vengeance after I had the flu this past Spring.

So in the past four months I have seen more "ologists" than I ever envisioned seeing in an entire lifetime. And - after a visit to the ER this past weekend which the old me would have put off until the symptoms went away or killed me - I'm wondering how this new me. . .  this Sjogren's me. .  . can find a happy medium.

If I get a headache now, the new me tends to think. . . this d**#*d disease has given me a headache!, when the old me would have taken a couple of advil and not given it much thought.  The Sjogren's me experiences a fever and assumes it's yet-another complication, but perhaps it's not!  Do I call the doctor when I wake up and can't move my fingers?

And perhaps (pardon my french here) diarrhea is just crappy no matter when - and how - you get it. . . .

Am I making the mistake of viewing my entire life through this new Sjogren's lens?  Have I gone to some kind of extreme and can't see the forest through the trees?

How do others handle this distinction?

How do you know which doctor to consult?  When a symptom is urgent?   When it's nothing to worry about?

And how do you know which lens to look through?

Just wondering. .  .

 

Let Me Drink What?

So you may not know this one little fact about me:  I'm a crazy serial reader.

That's right. .  . a serial reader.

And in the last three months my appetite for the "classics" has been veracious.  I have re-read my favorite Jane Austen novels. .  .suffered my way through only one Oscar Wilde book (after being spooked by Dorian Gray, why would you venture another???). . .  worked my way through at least seven novels by Trollope (I'm not the trollope, mind you, Anthony quite clearly was). . . and - with Henry James on deck in the batter's box - I'm now thoroughly enthralled by Edith Wharton.

Or I was. . .

Until I stumbled upon the following quote by her today:

This quote. . . on this day.

The day after my return from the family "vacation" which nearly undid me. . . the very day after the very night I listened for the return of one daughter who never came home and another who departed for Boston at 4:00 a.m. . . .the day I woke up and literally hobbled throughout the house with the pain in my knees, ankles and hips. .  . the day I succumbed to a two-hour nap. . . the day I took one look at the bright beautiful sunshine and thought:  Oh how many layers of SPF clothing and how much suncreen will I need to protect myself from THAT!. . .the unmistakeable day when I decided to shut myself in my air-conditioned house and bury myself in Edith - despite the fact that there isn't an ounce of food in this house? And This is what Edith has to say to me today???

Oh Edith, how you disappoint!

So I'm changing your quote, lady.   I'm changing it to this:

Keep Closed the Windows and Let Me Drink My Box!