How Not to Fake an Illness

“..but you don’t look sick.”

Ugh, I can’t begin to count how many times I’ve heard this over the last 5 years. Shortly after MyLove and I were married, we discovered I had Chronic Kidney Disease. Long story short, my kidneys were no longer filtering correctly. Their function has ebbed and flowed like the stock market. Sometimes they have dropped significantly, only to rally and lead me to believe I was in the clear.

In recent months, I’ve felt really rotten. I have battled with healthcare professionals to give me some kind of answer. My stay in the heart hospital was brushed off as acid reflux, my fatigue was simply a side effect of my depression. While this may have been the case for some, I knew better. I know my depression. I’m sort of an expert at it since I’ve battled it since my teens. THIS, this fatigue was not part of my depression. And I’m pretty damn sure that acid reflux does not land you in the heart hospital for THREE days. With a simple eyeroll and swish of a pen, I was dismissed. Just. Like.That.

I begged and pleaded with a nurse practitioner, send me somewhere, anywhere, anyone. I didn’t care, just help me find someone who will truly listen. Cue the harp strings and angelic voices, I found a doctor who not only listened, but had answers. I had a diagnosis, I actually had more than one. [Autoimmune diseases tend to hang out with other autoimmune diseases; you don’t typically just have one.] I have a B12 deficiency, Fibromyalgia and Ankylosing Spondylitis. Stir that all up with some kidney disease and you get a pretty pitiful me.

The fatigue is overwhelming. The pain, constant and persistent. But, I don’t look  sick. Upon closer examination, you may discover the plethora of medications have caused hair loss. MyLove jokes about my eyes clicking* when we’re trying to settle in for a night’s sleep. And sleep, oh that jokester. Some days all I want to do is sleep, and at night, not a wink. I catch a nap occasionally, but it does not recharge my batteries. It’s as if I’m a defective cell phone cord, never fully charging. The wicked humor of my disease, when I’m idle too long the pain is excruciating. If I try to do too much, and I’m run down for days after. A roller coaster that makes you scream in anticipation and nauseous all at the same time.

While I’m busy trying to stay busy, the stuff that is supposed to keep my body held together, is quietly screaming inside. The medication designed to help alleviate the worst of it, makes me more miserable. No, this is indeed how to NOT fake an illness. This is how to fake fine. I don’t want pity or to look pitiful. My pride screams in a voice that resembles mine. I want my normal life back. I want to scream over the wasted years, I squandered my health as if it would always be well.

It’s in the screaming and noise of self-pity that I find my new-normal. I’ve discovered that I am a work-in-progress on MANY chapters of my life. My resume has now been altered, subtracted and added to. I don’t have the course perfectly laid out in front of me. And being the rebel I am, I would have thumbed my nose at the ‘best laid plans’ and go it my own way, anyway.  I’ve met people on a parallel path, it is a beautiful symphony of tears and cheers. We have become fighters for our own health AND our diseases. While I am no expert on the disease, I’m becoming an expert on my diseases. Trust your gut, your inner voice, press in and press on. You are your greatest advocate. Fight for YOU!!!

Life is a journey with rough terrains, smooth sailing, rocking the boat, dancing in the rain… and some days, you just fake it to make it.

 

[* that clicking noise, persistent dry eyes and Uveitis]

Today

Today I know I have Ankylosing Spondylitis

Today I will grieve the life I had planned
I will be sad,
For me
I will cry
And cry out
Why me?
But just for today
Today,
My body is broken
And waging war upon itself
Today,
I will be miserable and shout obscenities
I will be angry at no one in particular
Just because, today

Today my precious granddaughter turns three
Today,
Her smile will warm me
For a moment
Today,
I will cry
For her
She won’t know the fun loving
Sit on the floor
Putting puzzles together, Grandma
For very long
But today,
She has me
The grandma no different
From yesterday

Tomorrow,
Is not promised
In life or
In death
In joy or
In pain
Tomorrow is,
Unseen and unpredictable
The plans we make,
Can change in a heartbeat
We cannot escape tomorrow,
Wishing for yesterday

Yesterday,
Is gone
It wasn’t
Bad or
Great.
But yesterday,
I didn’t have AS
Yes,
Logical brain,
I did.
But I didn’t know,
Yesterday

Yesterday,
Sometimes,
Looks better in the rear view mirror
“Objects may not be as
shitty as you remember”
Yes,
Yesterday might have
really sucked, too
Everyone has a yesterday,
Not everyone,
Has a tomorrow
So today…

Today,
I will grieve
If I feel like eating
It will be
Ridiculously unhealthy
I just might,
Wash it down
With some wine
Today,
I will roll around
In self pity
For me
For everyone around me
But just for
Today

Only today…

 

Reasons Why I Am Not Blessed

Well, did that title make you sit up and take notice?
Did you think, she’s nuts!? (more nuts-er)
and… she’s off her meds, again!

Yes, I am nuts and medicated; but I am not blessed.  Well, not in this sense:

blessed

adjective bless·ed \ˈble-səd\

Simple Definition of blessed
: having a sacred nature : connected with God
: very welcome, pleasant, or appreciated
—used to make a statement more forceful

Watch out for your toes y’all… but this word has been so overused in Christianese. “How are you today?” “Oh I am just so blessed, thank you.”  I’m guilty, I’ll own it. But when I truly look at that phrase, while the intent is to give props to God, it has a certain arrogance about it. Forceful indeed!

Honestly, I don’t remember a time when God was not a part of me. As a kid, my parents would drop me at Sunday School and come back to retrieve me. I attended church and youth groups with friends, but I wasn’t raised in the church. My mom was a generational-cast-off-Catholic* and I think my dad and God had an agreement, “You don’t bother me, I won’t bother You.” I don’t really have a salvation story, it’s just always been. I have some great rescue stories and turn-around stories and Annisa-you’re-a-bonehead-stories to which God showed up in BIG ways. But to say I have a revelation, salvation story; no. I have a pretty shocking testimony, however… brace yourselves, it’s pretty deep… I AM STILL HERE!!!

I am still here, yep, sums it all up. Sexual assault survivor, teen mom, overachiever, striving spirit, depressed, anxious, medicated, suicidal, devastated, renewed – I am still here. Days I didn’t think I would be, days I didn’t want to be. Yet, here I am; but don’t call me blessed. The implications of being blessed points to God giving special favor. While I know that God has been my saving grace, I don’t consider myself in special, segregated favor.

People often tend to treat God as a Genie: 

One to bequeath gifts and health and finances and the perfect job, only in times of need on our part. We never speak to him, ONLY when we need him.

Some treat Him like the TV Infomercial Guy:

If I act in the next 15 minutes, You will get me out of this situation. But WAIT, there’s more! For just a nominal fee, (like going to church, once) You will restore ALL the dumb decisions I’ve made! Right? Act now, this offer expires soon!

And there’s my personal favorite, the Barterer:

Ok God, I’m going to give up chocolate IF you will just do this one thing for me! (anyone? anyone? thought so!)

[I personally believe] We don’t receive special blessings JUST because we believe. I know that will fly-in-the-face of some believers, but I’ve never been the docile type. Stay with me on the Crazy-Brain-Train…

There are believers all over the world; I have been to one of  the most underprivileged, desperate, no electricity, no running water, villages in Peru. I have hugged and kissed these little Grubkins, and found more joy and pure love in their hearts than any overindulged brat back home. So many of us would look at the two, side by side, and think, “oh, the American kid has so much more. So blessed.” and “Those poor unfortunate Grubkins, have nothing, how sad.” WRONG!!! Brown flag!!

 

To say that stuff makes you blessed is an insult to Grace

How can I say that God has ‘blessed’ me with things, and wealth and health, etc when children are living in poverty? Children are growing up in crack houses? Tsunamis and earthquakes happen to believers, too. I can’t view blessings as a reward for simply believing, not while so many suffer; cancer continues to ravage and kill,  a dumb-ass guy puts mouse poison on the salad bar at grocery stores, devastation all around. And Yet, I should have the arrogance to say, I am blessed.

I understand, know and believe that I am a Child of God, but I’m not the favorite kid. Yes, I also know that there is an opposing force to what God wills, and that we also have free-will. That still doesn’t make me blessed, special. I will admit, I used to correct people who would say that they’re ‘lucky’. Oh no, no, no….you are blessed! As I self analyze and [over]think my own words; this is what I actually said. “NO NO NO, you are wrong. Luck doesn’t exist. It’s because You are special. You got the goodies, oh favored kid!”

Yes, He is a good good father, and like any parent, God wants to see us succeed. He gives us free-will to choose a path, even if it’s the wrong one. He will wait on us, arms folded, to come back around. Inspire us to make better choices.  He is not the Genie, TV Infomercial Guy or Barterer, “Ok, Annisa, if you do this for Me, I will give you all your desires.” Nope, not how it works. God doesn’t discipline. He doesn’t punish, although many still live in that fear.  “Annisa, I saw that you partook of far too much wine yesternight, prepare ye for your smite.  {I know you read that in a Shakespeare-ish voice in your head}

Not even the pomp and self-glory of mission work, ‘ok Annisa, go to Peru or to a woman’s prison and reach out to those poor underprivileged, unfortunate souls. Show them how blessed you are” WRONG, again. “Annisa, go to these places. Have your heart broken, splintered into shards, and see that I love them too. Not more, not less. I love them, too. Humble yourself, you aren’t all that. What can you learn from them, Bonehead?” {yes, God calls me Bonehead}

God loves us, even when we are unlovable, even when we reject Him. Even, when we aren’t sure we believe IN Him, He believes in us. Picture in your mind, God gathering every believer in a row, linked arm in arm; He would look at each of us, and say the same thing, one by one;” I love YOU, I have such great plans for you, and you, and you…. ”

 

*MY definition of generational-cast-off-Catholic = Someone who’s parents divorced and could no longer attend Catholic Mass, only to marry a man who had been divorced, and not be able to attend Catholic Mass. {Thanks heavens, for the Catholics Come Home program}

 

 

 

This Ain’t Cupcakes and Kool-Aid

As a chunky girl, I can easily turn my focus to food, I can associate most everything back to a food product. I identify colors by food products (my current haircolor is cotton candy). And without a doubt, if an invitation focuses around food or wine, count me in!!!

The heart of the Easter story is widely associated with the Cross or the empty tomb. This year, I urge you to look towards the meal; the last meal. It is at the time of the Passover feast, and the disciples are planning to celebrate it with their rabbi. They had no clue what was playing out in the shadows of the preparation. The betrayal, the confusion, the denial, the approaching death of their beloved teacher. Even in the chaos, Jesus was making things ready for those He loved. He wanted to be sure they would understand the events in the most simple way possible.

The room is set and the the Feast of Unleavened Bread is awaiting them. Jesus knew the details and inner workings of His Father’s heart. He knew that this would be the last meal He shared with his chosen brothers. As they gather, He drops the bomb… one of you will betray me, one of you, here with me. Naturally, all the bros said “not me”. Jesus already knew what was to come. Duh, He knows the prophesies and promises of the Old Testament, not to mention He shares His Father’s heart.

While my focus is on the meal, it isn’t about the food set before them. I won’t get into deep theology about the sacraments ( thousands of scholars have debated it for thousands of years) My focus is on the heart of the meal. The Teacher, the Leader, The One who loved them deeply had one last opportunity to teach his brothers about God’s Heart.

“While they were eating, Jesus took bread, and when he had given thanks, he broke it and gave it to his disciples, saying, “Take it; this is my body.(Matthew 14:22; NIV) 

Wait, whaaaa…where does it say anything about God’s Heart!? First, God made sure there was a a place waiting and prepared for them to have their meal. And then, of course the meal (sayeth the chunky girl!) The Heart is demonstrated in the order in which the gift is given. The Gift, the sacrifice of Jesus is represented in the meal, and He has an intentional order of things.

Jesus teaches in parables and metaphors. They are amazing word pictures that are easily identified by most everyone, even the Duh-ciples.

  1. He takes the bread – body, and presents it as an offering/sacrifice.
  2. Jesus then gives thanks. He knows He is about to be killed, and yet, He gives thanks to God. He is thankful? He knows His Father’s Heart, He shares the same heart, the same love. He IS thankful.
  3. This is where I get goosebumps, for oh so long, I totally missed this part… He broke it. Did you miss it too? His ‘body’ is intentionally broken for a purpose. It is broken in order for others to find hope. It is broken like the Heart of the Father. Woah, dude. Deep.
  4. And then, then..He gave it away! Boom! His brokenness, His Love, His everything. Gave it away. It doesn’t say anything in this passage about Jesus eating anything himself, which speaks even greater about His offering.

I think this single Scripture speaks volumes about our hearts, about our sufferings and how badly we have it jacked up and out of order. (And when I say we, I include ME!) When we are broken, when we are beaten and left empty, we wonder ‘why me’ and ‘why God, where were you!?’ We get angry at God or blame Him and can only be consumed with our own suffering. We find no purpose or hope in our despair. We just, uh…got nothing.

This is where the thump! happens…ready…

  1. Take the emptiness, take the hurt, the pain. Just take it.
  2. Be thankful! Get the focus off your misery and look for the greatness surrounding you! The people seated at your table. The love of those in your tribe. And look for the bounty in your brokenness. Thankful.
  3. Broken, yes, broken, not destroyed. Take the broken pieces, identify them, give them a name. My heartache, my abuse, my childhood. Mine, broken.
  4. And give it away! Don’t heap your brokenness on other people. Don’t make other people miserable in your misery. But take the brokenness, in gratitude, give it to your bros and sistahs! Lead, teach, share your heart. There is purpose in the broken pieces. It creates a masterpiece in a mosaic for others to appreciate and discover there is beauty in the brokenness.

As you gather at your Easter meal, whether it’s a big gathering or you’re alone, celebrate the brokenness. Be thankful for the journey, lean in and listen to the whispers of God’s own heart. And eat heartily and I hope there is cupcakes!!