From Where I Sit…

It’s weird the things you think about while you’re sitting on the floor of your bathroom. Yes, I also understand that it is strange for me to be sitting on the floor of my bathroom. More about that in a moment, I need to back this story up a bit…

Many months ago, I hadn’t been feeling well. I had this bizarre-o rash on my face, fatigue that would not be tamed and a general ‘not well’ feeling. I landed in the heart hospital with horrific chest pain; three days hooked up to all kinds of beeping things. The diagnosis? Acid Reflux. I knew it was malarkey, but I went to my follow-up appointment with a plan to argue the diagnosis. My fatigue was brushed off as part of my depression. Um, no. Well yes, I battle depression, and no, this wasn’t it. But what was it?

I begged for more lab work, anything for more answers. I was a pest with a purpose; I’d wear them down until they directed me to someone else. Which they did. One visit with a rheumatologist, and we set sail for an answer. I prayed for an ANY answer! I ultimately got an answer, Ankylosing Spondylitis. Yeah, I hadn’t heard of it either. As I researched the autoimmune disease, the more it seemed to fit. As often happens in autoimmune disease patients, if you have one, you have multiple. I was also diagnosed with Fibromyalgia. It all seems to make the other issues, of my medical past, connect. Vitamin B12 & D deficiency, Chronic Kidney Disease. Sheesh, quite the laundry list.

Meanwhile, back on my bathroom floor… As I sit here, I’ve been on 3 different medications over as many months. Insurance got to make the decisions as to what I must ‘try’ before the current medication, Methotrexate. It is categorized as a low-dose chemotherapy/immunosuppressant. Short story, the stuff that destroys your immune system so it quits trying to attack itself. So, here I sit, the day after my Methotrexate. Nausea, fatigue, the battle between wanting to wretch or take a nap. Typically, I’d be stressing about the dust bunnies behind the potty, thinking about how the walls need to be wiped down or how I really never liked this shower curtain. But today, as I sit here, I feel defective, coupled with the guilt of feeling this way. I’m not battling a life-ending disease, today. I’m fighting against being disabled. But that’s exactly how I feel. Dis.Abled.

PERSONAL PHOTO

As I first mentioned, it’s weird the things you think about while you’re sitting on the floor of your bathroom. I’m thinking about my lack of ability vs disability. In this moment, for now, I’m not really able to drive to the pharmacy to get the recommended vaccine [before starting the next phase of my treatment]. It’s only a temporary setback. It’s not as if I am in a wheelchair or anything. That’s being disabled, right?

Imagine driving around your supermarket/pharmacy and see a vehicle pull into the handicapped spot. You expect to see someone get out with a walker or the ramp lowering for their wheelchair. That’s being handicapped, right? Well yeah, it is right. But it isn’t the only right; disability comes in many shapes and sizes. Sure, we’ve all judged the overweight person on a ‘scooter’. “If they weren’t overweight they wouldn’t need that thing”, right? Fess up! We’ve all thought it. When we see someone step out of a vehicle on their own volition, we also think, “They don’t look handicapped.” I’m as guilty as the next guy. And as I sit on my bathroom floor, it’s as if I’ve been literally been dropped on my butt for my way of thinking.

We are so quick to be the judge and jury of someone else’s conditions. We minimize the needs of other’s to maximize our own. While I am the first to acknowledge that there are others who are struggling far worse than me. Yes, I am fortunate, I know that. However, by minimizing our weakness, we also minimize the level of understanding for those around us. I have to be truthful with what I’m struggling so that other’s understand.

My (our) truth is necessary so that we may recognize the truth in others. My truth, there are going to be days that I have to pull-in, lay down and honor my body. It is also my truth to share with others, so you know –the truth – Yes, I’d love to attend your special event! The truth of the matter, I may not have the energy that day. I may be struggling with excruciating pain. I may be concerned about the fact I will have no immune system to fight against a simple bug. Please understand.

The next time you circle the parking lot at Target, and spot someone pulling into a disabled parking spot, remember those of us with invisible illnesses. Those of us that ‘look fine’, even though we are not. The next time you see someone cruising the grocery store aisles in their ‘scooters’, ask if there is something you can reach for them. Reach out, reach up. Reach down, you may just have to help a gal off the bathroom floor!

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…

 

Death of a Dahlia

My dad took great pride in his golf course-esque yard. It was perfectly groomed, green and lush. You know the delight in the perfectly groomed marks left when vacuuming carpet? His yard was equally and tactically aligned; every week was a decidedly different direction. When his emphysema became too much for him to care for the yard, he sold the house. He would not hire someone to care for it, he couldn’t bear to watch someone else tender the greens.

I wouldn’t go as far as to say I have his green thumb, but I don’t think it’s black either. I don’t immediately kill plants and it certainly isn’t intentional. I’m not sure if I have a valid excuse as to my demise with botanicals, but this season has been an epic failure! (I’m not sure why I even plant cilantro, I don’t like it. It tastes like soap) Maybe the cilantro knows my disdain for it and just refuses to rise. My hanging baskets are always spindly. I blame it on the fact they are just out there hanging in the bright sun, being blown around, by the wind, with no protection. Kind of the way that I blame my lack of baking skills on the fact that my oven sucks; ok I’ve had 6 different ovens over the years. Anyway…image2

 

 

This summer my hubby and I fashioned a pretty amazing planter to cover up an electrical box that juts out of the patio. I decided to plant this 22 inch pottery-like pot, FULL of plants; 5 Dahlias + 4 Petunias + 3 White Dangle-y Flower Things. It was thriving. I was proud! I posted photos to Instagram and Twitter, they were glor-i-ous!!!

 

 

I began to notice their bright happy branches were starting to wither. The dinner plate blooms just hung their sad heads. They looked starved or something, so I watered them… often. I figured that since I had crammed so much into a tiny space, they must be choking each other out. They need more water. Right? Day after day they slipped away…

image1 (6).JPGMy hubby investigates the darling dahlias and attempts to water them and to his surprise, pools of water instantly form on the surface. He quickly announces that he’s certain that they aren’t draining properly. NO, dear one, THAT cannot be true! The leaves aren’t yellow and flimsy. They look, well I don’t know exactly what they look like, besides dead. Handy Helper Hubby puts a small drill bit into the cordless drill to offer a little drainage and upon immediate infiltration to the flower pot…whoooooooosh. A small river floods the patio! He places a couple of other tiny drain holes around the base, and we could have had a Slip ‘n Slide right there on the patio. But, but… they looked dry and….ugh. I took this defeat quite personally. I was certain that I’d assessed the problem correctly, but what I had actually done is drown them. And in the weirdest, most random way my brain works, I began to feel like I understood the drowned dahlias.

My health is definitely taking it’s own Slip ‘n Slide. My health is by no means in a crisis state, but it has been all encompassing.  A few days spent in the Heart Hospital left me with more questions than answers. A Dr. that explains away my fatigue as part of my depression and that I should exercise more, ok start exercising. I’ve dealt with depression more years than I can remember. I know what it’s like in the valley of stay-in-bed-and-shut-out-the-world. I have been able to get out of bed and participate in my life, but I dream of a nap while I sip my morning coffee.

There are more days than I care to admit, that I’m that dahlia with my head hung. Hanging in shame and guilt for my sickness. For my lack of energy. For most everything. I feel quite certain that I cannot bloom but I’m unsure of the condition that is plaguing me. When I really begin to think about the litany of illnesses and ailments, I just shake my head and sigh. When did I fall apart? How can this be my life? And then more of the drooping dahlia attitude because I’m feeling guilt over feeling guilty. I mean c’mon, I could have it so much worse. You know like the Zika virus or really bad Botox.

I’ve held the hand of my mom during her chemotherapy, I watched my father struggle with every breath for his next breath. I’ve watched my ‘little sister’ check her blood sugar and administer the appropriate amount of insulin. For the most part, those of us with chronic illnesses look fine on the outside. We melt into the landscape of everyone’s life without much elaboration. That may be part of the disguise of the dahlia. While others are assessing the situation from their personal patio, there is something contrary happening below the surface. With each statement made to a medical professional, I hear myself, I see the look in their eyes, as if there’s a cuckoo nesting in the dahlias!

As I look closer ant the planter on my patio, I realize that the petunias and white thingies are actually healthy! They look just fine!! I had been so preoccupied with the drooping dahlias that I missed the perky petunias. What a metaphor for my life, my timestamp of today. I’m so busy dwelling on the demise of my health, that I’ve missed the beauty of the support I have around me. The amazing people I have in my life, plant seeds of hope. They carefully tend to my needs more than I do. And that’s when I understand fully the confusion of the dying dahlia.

What may appear outward, isn’t necessarily what’s happening below the surface. I have to take care of myself, it isn’t selfish. I have so much more to plant and grow and cultivate in my life.

If I don’t take in self-care like sunshine, I’m sure to wither.

It’s a service to me and to others. It isn’t guilt driven. It is a gift I give to those whom I love. As it should be for all of us.

Surround yourself with people who are willing to investigate deeper with you and for you. Perhaps it’s a new perspective that will aerate the ground, a safe place to land where you can spill out like a river. I’m still searching for answers. I’m at a place of advocacy, for myself. I am beginning to weed out the things in my life that are choking out my joy. I am learning to breathe in the revitalizing spaces around me, and to rest when needed.

I will replant something glorious and give it proper attention. Bloom on.