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!

The Answer is Blowing in the Wind

In contrast to my last post, I've had a glorious few days.  (We won't talk about the absolute misery which descended in between and caused me to swear that I would not make any more social engagements because I would never again gather the strength to leave the house as long as I am lucky enough to live.  I've gotten over that.)

The point is, that I believe I have discovered a few things.

In my book when I speak about Buddhist philosophy, I mention that part of its very core is the acceptance that life is like the wind and can blow us from here to there at any time.

How true.  How true.

In fact, I think I've learned that my life can be directly connected to the weather.  Not quite a tenet of Buddha, but maybe a universal truth for me.  When I first became ill with Sjogren's, one of the most unsettling signs was that my exposed skin would turn bright red within 30 seconds of being in the sun.  Not only that, but exposure to the sun - even when swaddled in SPF clothing - would make me feel ill and more fatigued.  That seems to have changed a bit.   I went swimming yesterday without my long-sleeved bathing shirt and sat in the late afternoon sun for a good 30 minutes without redness or rash.  I'll take it!

On flip side. . .

My body doesn't seem to be able to handle the absolute heat anymore. I was outside in the humidity at a graduation party last weekend and sat - like a fool - with sweat dripping from the rim of my head; using the fancy cocktail napkins to wipe my brow and causing my forehead to turn a bright Penn State blue without my knowledge. (Oh, how I wished that the wind had come along and blown me somewhere else at that moment!) The only way I finally cooled down was in the cold shower after my return home, and  I was completely wiped out for two days following.

And then the wind blew in these last three days of absolutely spectacular weather, accompanied by some other postive happenings in my life.   I began a regimen of prednisone which rids me of my joint and muscle pain; I had the chance to spend time with different friends both in the restorative goodness of  the forest and in a swimming pool; I have prayed alone in the contemplative quiet of an empty gothic church; taken a revitalizing nap with acupuncture needles in my body, and I have switched to a lovely pair of bamboo pajamas. 

Is it any wonder I've decided that life for me is good once again?

The wind, my friends.

The answer to my life just may be blowin' in the wind.

Woo Hoo! The Sjogren's Syndrome Foundation Is Promoting My Book

Patience (or more likely, hesitancy) pays off!

I have always known that my book would would benefit my fellow Sjogren's sufferers, and the most likely way to reach them was through the Sjogren's Syndrome Foundation.  I had attended their National Patient Conference last spring and know that they do good work and provide patients with only the best information.   And although I had sent a copy of the book to them very early on, I just didn't seem to be able to break through and find someone who had the time to read it and respond to it.

Well here we are, almost seven months later, and its happened.  The Sjogren's Syndrome Foundation will promote and sell my book on their website!

Oh why did I ever doubt?  I knew I loved them!

Hopkins: Can You Feel Me Now?

I had a return visit to the Sjogren's Center at Johns Hopkins Medical Center earlier this week.  I'm not sure I have ever posted here exactly how much I love this institution, its physicians, and the staff there.

I suppose that there were two enlightening things about my visit and both concerned my peripheral neuropathy.  The first is that a physician stayed overtime for an hour-long nerve conduction study which I was not scheduled for.  (I ask you. . . who in the regular world of medicine would do that?)  The test revealed that there are no signs of large fiber neuropathy as seen by my local physiologist on the same study, and the more interesting thing is that my physician knew enough to know that the NCS done by my local doctor just three months ago had inconsistencies which needed to be explored; for the findings either meant that I could add another diagnosis like vasculitis, or the test results were incorrect.

The previous test results were incorrect.

Yet my small fiber neuropathy remains and seems to have traveled to other parts of my body at great speed.  At my last visit four months ago, I never even mentioned my hands or arms as troublesome spots, yet now they are.  Small fiber neuropathy is often described as having a "stocking and glove" distribution, yet my lack of sensation has - very quickly it appears -  moved to  "gaiters and opera glove" coverage.

Oh, insurance Gods, please approve those IvIG treatments promptly!

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!

Did I Beat the World's Record?

I stopped by the pharmacy today on my way home from the dentist (and on the way to the therapist, I might add) and picked up a few items.  I was silently trying to beat the world's record for medication refills and cannot, for the life of me, determine if I did.  Those people who work behind the counter are so professional, they don't bat an eye when someone comes in and picks up eleven (YES 11!) different medications for the same person.

Each was polite. . . for of course they all know me.  "Oh, hello Mrs. Spin, how are you today?  And how are the girls?"  And it was a team effort to gather them all together and collect the $2.02 which was owed.  (I thank my lucky stars for my husband's insurance.)  But no one told me if I'm going to make it into the Guiness Book of World Records.

If not, there's always next month.   I didn't even refill them all. . .

Why Do They Let Me Look at Patient Portals?

As I sit dangling my feet off the edge of the table in my rheumatologist's examining room, I can't help notice the notice on the wall which reads, "Five Reasons You Should Not Google Your Symptoms before Going to the Doctor."  All well and good.  I get it.  With all one can find out there on the internet these days, you may end up thinking that you have some terrible disease and worry yourself half out of your wits.  (And if you're anything like me, the first half of your wits may have disappeared a long time ago.)

But what about patient portals?  The information found there is real stuff - stuff pertaining to you - like results of your blood tests, biopsies, and things. Do not let me look at this, people!  And so I present to you, "Five Reasons I Should Not Look at Patient Portal Results."

• If you take 20 vials of blood from me at my first visit, I may not have regained all of that volume back by the time the results come in, causing me to be even more half-witted than I normally am.
• I then have to worry about why you felt the need to run each of those tests in the first place.  My personal favorite is the Diluted Russel's Viper Venom Test.  Who was Russel?  And why did he have a viper?  And just why, doctor dear, do you think I have anything in common with Russel's viper's venom?  I never reported a snake bite to you.  And if you gave to me, thank heavens you diluted it before you did!
• At least the snake charmer test was in the normal range.  What about those tests that aren't?  Holy smokes!  First high, then low.  All these things that I don't know!  Could so much really be going wrong in my body?
• You have now forced me to become an amateur pathologist, as I'm sure you don't have those results of my lip biopsy correct.

and. . .

• I now feel both validated and violated.  Validated, because I knew every inch of my skin, bones, and muscles were hurting.  And violated, because I didn't want to collect any other autoimmune diseases.

My First Sjogren's Patient Conference

I had a great weekend at the Sjogren's Syndrome Foundation's National Patient Conference with Ponzi and Veggie.

So many wonderful doctors committed to the cause.  Such a good vibe in the room.  So exciting to meet other Sjogren's patients for the first time!  And absolutely worthwhile to see Veggie and Ponzi become energized and want to work to raise both awareness and funds for the fight against Sjogren's!

And then there were the major scores:

• I got a chance to introduce myself to the physician I am scheduled to see at Johns Hopkins THIS TUESDAY!
• I handed a draft manuscript of my book to the CEO of the foundation and asked him to write an endorsement.
• Veggie walked up to one of the presenters, a premier rheumatologist at U Penn, and told him she was a first year medical school student interested in rheumatology and he invited her to shadow in his clinic so he could teach her what he knows.

Scores on all three fronts!

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.

There's Thinking for You!

This was the best graphic I could find to explain what happened to me.  All of the others had the word death as the next stop after septic shock.  And I can't bring myself to think about that.

But I can't help it.

You see, I was on that very trajectory.  I had septic shock.  I didn't know it.  Didn't think I was that sick. Thought I had a run-of-the-mill stomach bug.  Hemmed and hawed about even going to the emergency room on day three.  And then it hit me.  I was on a new immunosuppressant medication for my Sjogren's.  Maybe that's why I wasn't getting better.  Holy heavens, what took me so long?  What was I thinking?  I'm the very one who spent five weeks in the hospital as a child because I had appendicitis for four full days before going to the ER.  Wouldn't you think that I would have learned my lesson?

So now I'm left with flashbacks of things that happened (or I imagined happened) in the ER.  I'm left with the knowledge that - given another couple of hours without medical attention - I would have died.  I'm left with regrets that I didn't tell my family how much I loved them as the nurses and doctors scurried about; trying to bring my blood pressure up from 50/30.  And for the life of me I just can't imagine why I wasn't praying to God above to save my very life.

Was I just going to lie there and die fat, dumb, and happy?  Was that how my life was going to end?  With me not having a clue?

Sure, there were times when I was completely out of it, but at some points I was lucid.  When they told me that I would have to go to the I.C.U., I told them it was better because I wouldn't have to wait as long for a bed there.  Now that's thinking for you!  When my nose and lips turned blue, I somehow agreed with them that Sjogren's often makes my lips blue.  What?  I manage to complain about a lot of symptom, but circulation problems that bring about blue lips has never been one of them.  When they expressed concern over the fact that my skin was mottled, I told them that I often get rashes.  Yeah, like WHEN I'M ABOUT TO DIE!!!!  I get rashes then!

And what about the good catholic girl that I am?  I briefly thought about getting last rights but knew that every priest I know - including the hospital chaplain - was at the very same birthday party I was supposed to be attending at that very moment and I didn't want to bother them.  Yes, I was to be the first one to arrive at those pearly gates and tell St. Peter that I arrived there in a state of sin because I had the misfortune of dying on a Saturday night didn't want to be a burden to anyone.

And then I heard music that no one else did.  Not angelic chanting, mind you, but marching music. . . like John Philip Souza music.  Yes, I suppose I was planning on high-stepping on in to the afterlife to Stars and Stripes Forever.

Like I said. . .

Fat.

Dumb.

And happy.

Oh yes, and lucky.  Very, very, lucky!

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?

 

 

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. . .

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!

An Abrupt Departure from My Usual Posts (but, hey, who's checking)

I assume that everyone who is diagnosed with a chronic illness passes through a stage akin to grief.

For months now I've been feeling genuinely ill.  And - although I've been able to reduce or eliminate some of the troublesome symptoms - it seems the next, more-serious, one is always waiting to fill the void.  For Sjogren's is - by its very nature - systemic and can attack almost any organ or system it chooses.  And so, for the first time in my life, I have begun to worry about life-threatening events.

Me - who hasn't made a "sick" appointment with my doctor in the 15 years I've been a patient.

 I worry about blood clots, pulmonary embolisms and stroke.   I worry about lymphoma.   And, during my recent struggle with diverticulitis, I worried about a host of things ranging from vasculitis and pancreatitis to perforations and peritonitis.


And now I find myself truly grieving that which I have lost. . . the old me so-to-speak. . .the simple me.  Not a me who ran marathons or worked out at 5:00 a.m. - but the me who walked effortlessly through the grocery store. . . the me who woke up refreshed, instead of tangled in a horrifying web of morning dryness . . .the me would could bask in the sunlight without developing rashes. . .  the me who took her health for granted and didn't worry about an ominous cloud waiting around the bend.

So, in a fettered-frenzy of fear-induced insomnia, I offer the following:

I Grieve

I grieve the me who used to be 

fresh-faced as the honeybee;

and, mindless of unforeseen blows,

was not attuned to wafting woes.

I grieve the me who used to flit

from bud to bough, no thought of it;

for sun's harsh rays would never touch

this woman who life loved so much.

I grieve the me who never knew,

the mist of pain on sunrise dew;

and who, from daybreak's web would climb

unfettered from sleep's silken vine.

I grieve for me who must endure

a wear-worn dream which is no more;

 for who could guess, that fate unknown

would claim uncertainty my home.

I grieve for me who, worry-wrought,

in midnight's hour, dreary caught;

to whom, fresh troubles deftly cling

like regal robes on new-crowned king.

I grieve for me who tears have fled,

to leave life's sorrows yet unshed;

and dry up yesterdays of yore.

I grieve the me who is no more.

Signed, a

less-than-normally-exuberant. . . 

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!