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!

01 July 2014

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