24 July 2014

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. . .

21 July 2014

Only a Sister. . .

So I think by now we all know that I'm a bit of a wine "enthusiast". The fact that I have a Pinterest Board with a current count of 292 pins on my love of wine alone may testify to that. . .

And I don't think I've kept it a secret from my readers that I've been know to imbibe from time to time in wine that comes in a cardboard "cask" (a.k.a. box)

or - in a pinch - a purse. . . .

 But only a sister would be brave enough to send me a photo of this sign she saw while on vacation. . . .

Now if I could buy wine by the suitcase, I'd be the happiest woman in the world!  Just think how much fun I'd have packing. . . .


Oh. . . and did I show you the new travel mug I bought today????  It sooooo matches my bedroom decor.  Not to mention my car!!!!

18 July 2014

A Letter to the Brain Stealer

 Dear Alzheimer's Disease,

There are a number of different diseases for which I have developed a dislike, but I have to tell you right now that you top the list.   And for good reason.  You have taken a brilliant, loving, devoted man like my father and left him putty in your hands. 

And because of this, I believe I'm entitled to ask a few questions of you:

  • Why do you have to be so cruel?  Is the sheer degradation associated with the normal aging process itself not good enough for you?  Or do you have to feel like the big man stepping on the feet of mother nature?
  • If you feel the need to take away my father's mental abilities, could you just do it for God's sake?  Don't leave him remembering that he used to walk but forgetting that he no longer can.  Find some way to let him realize these new limitations you have imposed on him.
  • If you feel the need to change people's personalities, why not make them all happy and serene in this state of delusion?   Why anger?  Why nastiness?
  • And what about acceptance? If you're going to continue to be the brain-stealer you are, could you not incorporate a little acceptance into those brains you invade?
  • Why are you so resistant to change?  Do you have to be so secretive about what makes you tick?  What are you holding out for?  The rest of us are waiting for a cure.
  • Do you have any kind of heart?  Why can't you provide some reward for the overwhelmed caregivers?  Could you not provide a moment of release?  Of tenderness?  Of happiness?  Of respite from this neverending burden?
Oh, Alzheimer's, can't you take a break for once?   God knows, the rest of us need one!

Respectfully submitted,
realizing my own future may be 
in your hands as well . . .

17 July 2014

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!

14 July 2014

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. . . .

12 July 2014

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!