Tuesday, July 1, 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