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.

Invisibly Ill

To Those Who Don't Believe in Invisible Illnesses,

 
Forgive me if these thoughts are too raw, too painful, or too forceful to be let out now.  I am usually one who waits patiently for hurts to dissipate throughout my body.

Not this time.

Not this time, for you have reduced me to a pile of rubble.  A walking panic attack.  An indignant, yet defeated, individual.

Did God create you without a heart?  I have not heard you squeak like the tin man.  Likewise, you have never heard me roar like a lion; for I have no courage left to fight you.  Perhaps we were both born without brains.

I have internalized each hurt endured by your attitude of omission, but I now have a few things to say to you.  Depression is REAL.  Sjogren's Disease is REAL.  And anxiety, for me - right now - is VERY, VERY REAL.  How is it that you have decided to hurt me most when I needed you?  When I reached out for help? I used to have a name for you but it no longer applies.  I know not what to call you now.

• 

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 physician would then dissect said 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 decreed the king fit to do his duty for 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!

Erasing "Church Lady" from My Moniker

As many of you know, I've been on a family/medical leave of absence from my church lady job for 12 weeks now.    What originally began as a "family" medical leave for Ponzi's illness evolved into a leave for my own health as I began deal with the emerging and varied symptoms of Sjogren's Syndrome.

But as my scheduled time to return approached, I grew more and more anxious about returning to my job: anxious because I knew in my heart of hearts that I could never handle the stress level again . . . anxious because I didn't even want to try . . . . and anxious because every time I thought about it, it brought back flashbacks of a different time. .  .a different me. .  . a me that can never be again.

But you see, the saddest part is that I don't even want to drive by the building any longer.

Because I feel like I quit God.

I quit God and that beautiful and sacred space that used to be my second home.  I quit the floors I used to see polished to perfection . . .the weekly liturgies I used to put together with care. .  .the grieving families I used to help. . . the complainers I used to lend an ear to. .  .the plumbers I used to send in the right direction . . . the schedules I used to prepare . . . the altar servers I used to train . . .the poems and prayers I used to write. . . Christmas decorations I used to oversee . . . toilet paper I used to order. . .

You name it.  I have walked away from it all.

I knew every square inch of those buildings - inside and out.   I was baptized in that church and made every one of my sacraments there (except one - ironically enough, a fire erupted in the church the week after Drip Dry stepped through the doors so we needed to move our wedding to another church)  And my children have all grown up with that church building as a part of their lives.

You see, I'm a creature of habit.   And that historic building and all it encompassed was a huge part of my life.

And I would be one big, fat liar if I didn't tell you that I am now feeling tremendous guilt in the walking away part.  And I'm having a tough time distinguishing between my relationship with God and my relationship with my job.

A job which was literally sucking me dry.

In retrospect, I honestly can't say when my Sjogren's symptoms began.  I've read that saliva production needs to drop to at least 40 percent before you notice a dry mouth.  And could my production have dropped so dramatically that my lips were literally stuck together and my tear production was less than half the minimum just one month after encountering the flu?  I know my joint pain has increased dramatically (and still continues to do so) but I had been dealing with some level of pain for at least five years.  And the neuropathy in my hands and feet?   The truth is, I've been ignoring that for years as well.  Did I ever mention those mornings I would appear at work without the ability to grasp a pen hard enough to sign my own name?

No, I focused on my increasing anxiety levels instead - working my way through different therapists, anti-depressants, and Xanax strengths.   And that alone should have warned me to slow down. . . to say "no" a few more times (well, perhaps at least once). . . and to pay more attention to what my body was trying to tell me.

Instead I waited for the train wreck to hit.

And hit it did.  So now I can't go up or down a flight of stairs without pain.  I cannot walk through a grocery store without feeling fatigue.  And I cannot eat a mere cracker without liquid with which to wash it down.  (As if I needed yet-another reason to be thankful that God invented wine!)

Yes, back to God now. . . .

You see, God, I really didn't want or mean to quit you, but I needed to quit some things I thought I was doing in your name (but - in reality - was perhaps doing for my own reasons.)  I needed to stop trying to be superwoman in others eyes.  I needed to stop working seven days a week.   I needed to stop pretending I was strong.  And perhaps I needed to be a little less of a control freak.  You see, I always said that if I were God, I would like a clean church.  (For why else would they say that cleanliness was next to Godliness?)

But I'm not you, now am I?   Perhaps I needed to concentrate on YOU more.  Perhaps I even needed to attend Mass without thinking that the altar servers should tweak their bell-ringing. . . or worrying that I had left a typo in the announcements. . . or resisting the urge to run and pick up drooped flower petals off of the floor. Perhaps I needed time to sit down in your presence and just listen. . . to take the time to pray without other thoughts crowding my head.

Novel idea. . . now isn't it?

So God, I am earnestly asking you to help me though my little crisis of conscience here.   I know it may not be today. . . or tomorrow. . . or next week. (As a matter of fact, I'll be on vacation next week and will have tons of other stuff to worry about. . . like my children drowning in the ocean . .  .or getting in a car accident. . .or having the strength to go to the grocery store. . . or looking like a fool bundled up in sun-protecttive clothing while everyone else is scantily clad. . . .so don't even try to help me next week, cause I'm devoting the whole week to truly being undun.)

But I'm counting on you to see me through to the other side somehow. . .  someday. . .in some fashion.

Because I'm crying real tears here. . .
not ones from a dropper. . .

for the first time in like forever. . .
so that really must mean something. . .

OMG. . . Call the Crumpleologist!!!!

So just the other day I recounted the various types of fatigue I have encountered with my newly-aquired autoimmune disease.  This post was based on an article found on the Sjogren's Syndrome Foundation website entitled 13 Types of Fatigue.

One type of fatigue I did not mention was one the other author described as sudden fatigue which she also called the crumple and fold fatigue, but I admit that the whole concept seemed foreign to me.

Until yesterday when it hit me.

Out!  Of!  The!  Blue!

Perhaps I attempted to do a little too much because it felt like a somewhat "good" day. . . perhaps it was a mistake to take my sun-sensitive body in my new long-sleeve rash guard shirt into my friend's pool. . . or perhaps it was the fact that I actually attempted to prepare dinner for my family. .  .

But whatever the case, I suddenly became as limp as the noodles in the pot - afterwhich I fastened my butt to the couch in total wipeout mode. . . waiting for the clock to strike eight so I could safely put myself to bed.

Now I've been to quite a few "ologists" since the onset of my symptoms. . . rheumatologist. . .hematologist. . .pulmonologist. . . dermatologist. .  . .ophthalmologist. . .gastroenterologist. .  .

But I have a question for you:   Do they make a crumpleologist???  Because if so, please schedule an appointment!

Oh Mr. Sun, Do You Need Anger Management?

So it's no secret that I'm not a fan of going to the beach.   And if you need to know my reasons, you can refer to this post written many, many moons ago.

But it's not the moon I want to talk about here. It's the sun.

The angry, angry sun.

Now the sun itself may not be mad at everyone, mind you, but it sure has taken a disliking to me.  Ever since my onset/flare of Sjogren's Syndrome this past Spring, I cannot tolerate even two minutes of sun exposure without turning bright red and rashy in spots.  In fact Drip Dry himself noticed it when we stopped on a road trip and my arms had this reaction just walking from the car to the rest stop.

And then I knew it.

I had developed a severe sun sensitivity.

Now when Trigger was first sick with Lupus (and the Spin family was a normal beach-going family) her rheumatologist insisted time and time again that she could not go out in the sun.   Although her skin did not immediately react when sunlight hit it, he was trying to avoid a flare which can sometimes be brought on by a sunburn.   Now - being that I used the word normal in reference to the Spin family - I'm talking about a time which pre-dated the undun years . . .  which is just another way of saying that my daughters where still young and under my control.   So, when on vacation, Trigger and I would wave goodbye to the sun-worshipping members of the family and spend our time on more productive endeavors.   Like shopping. . . or movie watching. . . or napping.

I grew to love this down time and so my fair, Irish skin never returned to the beach again.

Trigger - on the other hand - took a walk on wild side later in her teenage years and returned to sun bathing - her olive skin browning and tanning without so much as a hint of a burn - never experiencing a flare.

Maybe that's when Mr. Golden Sun began to show his displeasure with me.   Who knows?

But, whatever the reasons, I have spent a large part of this particular summer over-itchy, over-clothed, and over-heated!

And, while I don't like the beach, there are many things I like to do in the sun:   I love to go in a swimming pool . . .I  love to sit on a deck sipping coffee. . . I like to feel the warm sun on my face. .  .and I like to walk from my car into the grocery store without looking like I'm headed for an arctic exploration.

Over-done. . . that's what I am.

An undun-over-done. . . .

Lucky 13

Yesterday I read a post on the Sjogren's Syndrome Foundation blog entitled 13 Types of Sjogren's Fatigue.  It was a well-written attempt to categorize and explain the fatigue associated with this disease.

Now I may not be as erudite or informative as the author of that article, but I thought I'd give voice to a few more of my own:

• The Oh No, I'm Awake! fatigue - This is the one I face each and every morning.   Sleep?  Are you kidding?  Did I really sleep?  I know I spent time in my bed (because I distinctly remember waking up about 25 times throughout the night) but the word "rested" somehow just doesn't seem to apply.

• The Bone Tired fatigue - This is the one that comes from dealing with joint pain. . . .all of that ouch!-ing drains my energy and makes getting from here to there a feat of great proportions.

• The Lead Foot fatigue - Now having a lead foot usually refers to one who has a propensity to drive fast, but there's nothing fast about this.  No, it feels like something (or someone) is literally weighing me down - forcing me to move in slow motion.

• The All-But-Surgically-Attached-to-My-Bed  fatigue - One of my favs. . . . These are the days when I just can't wake up. . .  when my children or husband try to rouse me from my bed. .  . I respond and tell them I'll be up shortly. . . and drop back into a d-e-e-p sleep within seconds. . . unable to move from the bed.

• The I Emptied Half of The Dishwasher and Need to Rest fatigue (a.k.a. I Just Took a Shower fatigue) - Oh we all know this one, now don't we???  All that up-and-down with my arms, spine, and head.   Exhausting.  This particular fatigue is somewhat akin to the following:

• The I Vacuumed the Living Room fatigue - Sucks the life right out of me. . . I think I'm beginning to like dog hair after all.

• The World Is Spinning fatigue - This one comes with the added benefit of vertigo and its best friend nausea. And for once it has nothing to do with the spinning associated with my darling daughters. . or my proclivity to get the Wine Spins.   Must lie flat on my back with this one.

• The Human Barometer fatigue - Oh yes, I can tell when a storm is brewing. . . no need for The Weather Channel in this house.

• The I Just Had a Panic Attack wipeout (often compounded by the I Had to Take a Xanax to Offset It sleepiness) - Now this one may, or may not, be related to my Sjogren's, but I'm here to tell you that the physiological process of experiencing panic can wipe me out for the rest of the day.

Okay, I count nine types of fatigue I deal with.   They may not be the Lucky 13 the other author referred to, but they're the ones I call my own!

Living. . . with a Swedish Man's Name

Hold on to your hats, folks. . .  this is going to be a long one.

Many of you know that I have a daughter who has battled with Lupus since she was 11 years old.  My other two daughters also have suffered since childhood from a form of Rheumatoid-like Arthritis.   And my youngest daughter has recently had a knock-down-drag-out fight with Guillain Barre Syndrome - yet another autoimmune disease (and one of the very few that you can recover from in time.) And - if you're anything like me - you can only imagine how many times I watched as they suffered and prayed, "Why God? Why is it not me instead of them?"

Well I'm here today to tell you to be careful what you pray for.   For if, perchance, you thought that I was somewhat undun in my previous years raising these daughters, I need to tell you now what it's like to have my life completely unravel after being diagnosed with an autoimmune disease of my own.

As you may know, there are many diseases classified as autoimmune - perhaps the most well-known in the long list are Lupus, Rheumatoid Arthritis and Multiple Sclerosis - Auto is an prefix meaning by oneself and immune refers to the immune system.  So they all have one thing in common: because of some mixed-up stimuli, the "fighter" cells in your body begin to mistake healthy tissue for a virus or "intruder" and go on the attack - creating an insidious process of inflammation and destruction.

Most people who battle with autoimmune diseases also suffer from fatigue, malaise, fever, and a general sense of feeling "unwell" - is it any wonder when there is an internal war waging within your own body???

In the case of Sjogren's Syndrome, the immune response is primarily directed toward tear and saliva glands, resulting in a parched,cotton-like mouth and dry, gritty and itchy eyes.  Sjogren's can be classified as primary (meaning it's a stand-alone disease) or secondary (found in conjunction with Lupus or Rheumatoid Arthritis) but it doesn't quite matter which form my ultimate diagnosis will take since primary Sjogren's can become as systemic and destructive as Lupus itself - attacking the skin, joints, teeth, kidneys, heart, gastric and nervous systems. 

 A disease by any other name. .  .

My own diagnosis was based on positive blood tests for anti-nuclear antibodies (ANA) along with a specific marker antibody for Sjogren's (SSA).  Although these antibodies were first uncovered four years ago, I felt I was asymptomatic and did not opt to be treated.  After I came down with the flu this past Spring, everything changed.   In my case I was lucky.   I was familiar with the symptoms and when they "hit" I made an appointment to deal with them quickly.  Nevertheless, a mere three months later, my visit to the ophthalmologist revealed that my tear production is less than half the minimum. . . I have dental decay due to lack of saliva production . . .I have developed severe sun sensitivity as well as a funky, itchy, and irregular skin rash. . .I pop antacids like candy. . . my joint and muscle pain has become so intense that I hobble around like an old lady at times. . . I have tingling in my extremities. . . and blood tests have also revealed that I have certain antibodies which are associated with a blood clotting disorder.

So in what ways has my life changed?  How can I explain this strange and whimsically-named illness to others who cannot "see" anything wrong on the outside?

Well for starters. . .

While most people start their day by saying Good Morning, there is nothing "good" about mine (well, excepting the fact that I woke up; ergo I'm alive. . .)  No, my first thought is Did I drink two quarts of Jack Daniels last night? because my parched mouth feels like an overgrown cotton field (and don't they brew Jack Daniels down there in cottonland????)  But when I roll over I immediately decide No, I must have been hit by a train instead. . . because every joint and muscle in my body is screaming.     And when I open my eyes I quickly add And that d-----ed train must have tossed me like a drunken-Jack-Daniels-rag-doll into the nearest sand ditch. . .because my eyes feel gritty, dry and itchy.

Good morning world.   Here I come!

But first I have to sit up.

Now, until quite recently, this sitting up movement precipitated the start of a dry hacking cough which would plague me until late morning. But just this morning I decided that I want to kiss the pulmonologist  who recognized it as the result of acid reflux irritating my lung tissue - the little pill he prescribed three weeks ago has at last begun to kill two birds with one stone and solve my GERD issues as well!

So then - cough or no cough - I hobble to the bathroom, immediately brush my teeth with some foul-tasting specialized toothpaste, drop some eye drops in my eyes, slather myself in anti-itch gel, take the first of my eight (yes, eight at last count) prescription medications, and get on with my day from there. And when I say "on", I mean on the couch. . .

The best simile I can use to explain the fatigue I feel is this:

It's like the last day of a routine sickness for "regular" people.  I remember it well.   You wake up feeling better than you did the day before. . .the fever, sneezing, or vomiting are gone at long last. .  .and you say to yourself,  I'm going to get out of bed, take a proper shower, and try to vacuum some of that errant dog hair that's been accumulating in mountains since I've been sick.  And so you do.  After the shower, you're quite exhausted and look a little green around the gills. . . but you're determined to go on.  Yet after the quick attempt at the most minutest bit of housework you think, Holy Jesus!  I never thought that vacuuming had been elevated to an Olympic sport!

And you find yourself quickly back in bed for the rest of the day - all the stamina you once possessed now sucked up by your battle with the vacuum cleaner.  Feeling like a musher who lost the I-Did-A-Clean to the dog hair.

Well that, my friends, is the battle that an autoimmuner fights every day.

And on top of that, most of us are dealing with joint pain, or rashes, or muscle aches.  Some of us have to hide from the sun - covering up every time we go outside - learning to love cloudy or rainy days ( but no wind, mind you . . .for wind dries the few tears you still make). . . saying goodbye to sunny days by a pool or the beach.  Forever.

Yes, forever.

Others (not I, thank God) are dealing with serious and life-threatening conditions.  Yet I carry around the knowledge that the other shoe could drop at any moment. .  . that I am 40 times more likely than the average person to develop lymphoma. . .  and have a 30% chance of having a stoke or pulmonary embolism over the course of my life. And on the opposite end of the spectrum, I've now been told that my blood is not clotting fast enough and I'm susceptible to bleeding events.  Really?

And how is it that the accompanying neuropathy can cause my feet to hurt, tingle, and feel dead all at the same time? Does anyone really understand that?

And then there's the sense of being alone with your illness. . .that others somehow just don't get it.  I know I'm lucky because my daughters can sympathize with what I'm going through.  But even my well-meaning-yet-all-too-intelligent husband looked up this disease with a funny sounding name on Wikipedia and found it a bit too complicated for him to understand.  But still he tries.  He sees what I go through and doesn't complain about the absence of groceries in the house or dinner on the table.  And I have many friends, co-workers, and family members who have been supportive through it all.

So enough with the pity party. . .Why did I write this blog post?

Because I always feel better when I put pen to paper (so to speak). . . because it helps me to process this new "life" of mine . . .Because I want you to know the truth if you ever come across someone with an autoimmune disease like mine.

And I want to honor my children who have lived with symptoms like these for so long it's become the norm for them.   So instead of asking God to transfer their illnesses to me, I now ask for the grace to emulate their courage and acceptance instead.

Yes me.

Emulating my daughters.

Now isn't that just the very definition of irony????

 

aka. . . The Undun One

GRATITUDE? REALLY?

So I know it's been quite a while since I've posted here. And I'll leave it up to your imagination as to whether or not A Mom on Spin has become more unraveled in her 18-month absence. . .

But on the eve of my leaving work and starting my three-month Family Medical Leave, Trigger said something which made me think.  She said, You know Mom, I've read that the happiest people are those who keep a gratitude journal.

Gratitude.

And at first I thought:  Just what have I to be grateful for?  The cascade of unfortunate events which made me decide to take the leave in the first place?  My mother's breast cancer?   My Alzheimer's-ridden father's stroke and subsequent move to a nursing home?  Trigger's Lupus?   Ponzi's newest autoimmune disease and loss of her last semester of college?   The Kevorkian-like struggle with my daughters which ended in the cat's eventual death anyway?  My panic?  Depression?  My own diagnosis of Sjogren's Syndrome? 

How am I to be grateful while watching my bib-ridden father shake and struggle to consume his minced-up meals in a room full of other Alzheimer's patients?  Watching the man next to him at the table literally eating his meal card?

Thankful?

Did I not reach an all-time low last Sunday when I snuck out of a family baby shower - embarrassed that my panic attack in the baby mega-store had caused me to snatch a gift card and run while others apparently were able to pick adorable presents at their leisure?   Wasn't I downright jealous of the fact that they could select a panda bear bath ensemble or "perfect" spit-up towel?

But God does have a sense of humor, you know. . .  because I was nearly the only shower attendee that didn't come down with the stomach flu as a result of all those "goodbye" hugs and kisses.   Sneaking away unnoticed ended up to be the healthier alternative in the long run.

So that's what I'll be thankful for today.  That I'm Alive and Well. . .

.   . .and today you know that's good enough for me.

Breathing in and out's a blessing can't you see.

Today's the first day of the rest of my life

and I'm alive. . .and well. . .

Well now thank you for that bit of wisdom

Kenny Chesney

Hello God? It's Me Again. . .

 

Hello God?   Can we talk?

As I'm sure you already know, Trigger was home this weekend.

That's right, Trigger was home for the first time since she left for college over six weeks ago.

Now I don't pretend to call myself an expert on dorm life or anything, but I'm convinced this may have been the first opportunity our little Trigger had to actually sleep since she left home.  And the first opportunity to shop. . . and the first to get her eyebrows threaded. . . and her nails mani-pedi-ed. . . Oh yeah. . . and the first time she actually did her laundry ( 'cause it seems that if you spend all those extra flex dollars your mother puts on your student card on Pumpkin Spice Lattes, suddenly there will be none left over to do your laundry . . . )

But it was also our first opportunity to embark on a new more-grown-up mother/daughter relationship.

Just how did it go? you might ask.  Let's look on the bright side and say that - although it may have been the first - it will definitely not have been the last.  . .

And so I find  -  Dear Lord - that I'm in a position where I simply must ask you once more. . .

Watch over that little Trigger of mine. . . keep her safe and warm (even though I refused to buy her that new white Northface jacket) . . .  Keep her healthy (promise me you'll make her phone that prescription in and start taking her meds like she is supposed to, 'cause  Friday's phone call from her NYC Rhuematologist with her blood test results should have been enough to scare the bejesus out of anyone. . .)  Make sure you drag her little butt out of bed for her 8:00 a.m. classes and teach her that all-nighters should be reserved for exam time only.   Remind her always to clean her hair off of the shower walls (she does have roommates, you know. . . ) and show her the miracle of  putting more flex-dollars on her student card from her own bank account!  Make sure she's eating a healthy diet (once more, the absence of flex points rules out her prior vending machine diet. .  .) And in regards to her social life and the sorority she's joined?   Could you make sure that she remembers to stand on her own two feet (despite the fact that she will be forced to stand in her old Uggs and not the new pair she begged me for. .  .) and doesn't do anything too wild and crazy with those frat boys???

Could you do that, Lord?

'Cause God knows  (yes, You! ) I can't.

This stinks!

Quite honestly,

I don't care how "challenging" being the mother of Trigger can be . . . no teenager deserves the arthritis that has descended upon her hips - causing her to hobble around the house like she has today - while the familiar threat of Lupus looms above.

I know it's easy to throw the blame her way. . . to accuse her of not taking proper care of herself. . . of refusing to take her medicine until she needs it. . . of eating wrong. . . of not sleeping enough. . .of burning the candle at both ends. . .

Until she starts to hobble.

And then I remember that she's just a kid. . .

And what's worse - when I go to the kitchen to retrieve her medicine for her, I discover that her younger sister has taken the last of Trigger's medication because her knees and ankles are killing her too!!

At that point, even the most disoriented of mothers can stop and focus long enough to raise a fist in anger and cry out to all who may hear her, This stinks!

It stinks that all three of my daughters (no matter how wacky, cranky, and assertive they may be) all have to live within the limitations of some little-understood arthritis. It further stinks that Trigger has to lie in wait for Lupus to rear its ugly head from remission. It also stinks that two of my daughters are on the same medicine and I can't keep enough in the house . . . and it stinks because . . . well . . . . It just stinks!!!

So, God, can you hear me now????

Can you open the window back up to let the stink out???? Please????