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…

 

When A Wife Has To Question Her Marriage Vows

More than five years ago I married the love of my life. I can honestly say that he’s the love of my life as I’ve known him since I was 9, my first kiss when I was 11, and wrote his name on every notebook I had. We had a break-up of over 30 years, but we found our way to each other again and married quickly, knowing it was right. We stood in front of family and friends and made promises and vows to…

…to have and to hold
from this day forward,
for better, for worse,
for richer, for poorer,
in sickness and in health,
to love and to cherish,
all the days of our lives.

We always believe in the better, richer, health and love and cherish; but what happens when the “sickness” takes over. Shortly after we were married I began to feel really lousy. I thought it was a pretty standard UTI aka bladder infection. I’d had a kajillion over the years, so it was no big deal to me. It was however a big deal to my favorite Nurse Practitioner. She saw some unusual flags in my lab work and immediately requested more labs. Fast forward several weeks; I’ve met my new doctor, a nephrologist; a kidney doctor. It has been determined that I have Chronic Kidney Disease; a progressive disease. Simply stated, my kidney function is declining, and will likely continue until failure. It could be decades until that point, if ever; but some life style changes are needed immediately.

Together, my hubby and I, took a realistic look at my future and what it may mean; dialysis or transplant. We have been realistic and he’s amazingly supportive. He’s my Jiminy Cricket, he helps to keep me positive and on track. We have been transparent when people ask why I can’t have ‘brown pop’ or a big fat steak when we dine with friends. Yes, there are cheat days when I just ‘need’ a Diet Coke or sneak a bite (or 5) of hubby’s medium-rare steak. He’s not a chronic-cop, but he helps to keep me in check.

Here we are, after five years of marriage, facing another medical hurdle. For months I’ve been wrestling with multiple issues. Random weird, things; a rash on my face, extreme fatigue, horrific pain that was come and go, and ridiculous sleep patterns. Doctoring for independent symptoms, mainly because they seemed to have zero connection. At the end of April, I had such crippling chest pain that I went to the ER. Long story, longer; I was admitted to the Heart Hospital with ‘inverted T-waves’ on my EKG. My experience was less than favorable, but that’s another blog for another day. During my follow-up visits, I felt as though they though I was nuts or over reacting. I was told my chest pain was Acid Reflux and my fatigue was part of my Depression. I’ve battled depression/anxiety for decades; I know the difference.

I’m not sure if it was a quest to prove my sanity or just to prove the doctor wrong, but I kept pushing for more tests and demanding action. It seemed as though more medical professionals were scratching their heads and rolling their eyes. It wasn’t until I was referred to a Rheumatologist that I got some answers. Her answers were actually questions, questions no one else was asking. She connected dots and pursued more options. Today, I’m readying for an MRI to prove/disprove a diagnosis. As of now we have some answers, none of which are catastrophic, but not something to cheer about.

It’s in the waiting that I have such unrest; I’m not a patient, patient. It’s my husband that keeps me grounded. Perhaps part of his easy manner is a thread of naivety or disbelief, but he’s not one to dwell on my illness. I tend to be the one to dwell, roll around and be miserable, in my illness. I feel guilty for my illness, I want more for my family. I want to be more for them. I don’t expect them to be the Web MD freak that I am, and know each symptom and prognosis. It’s on days when I feel as though I can’t move, I have terrible pain and want to be a pitiful puppy that I question my marriage vow. Not necessarily my vow, but his.

I know that my husband professed before our friends and family that he would love me in sickness and in health, but neither one of us signed up for this. Husbands are amazing creatures, and have pretty similar natures; they are fixers. When I say that I’m having a tough day, he asks why. It’s not as though he doesn’t know why, but he’s wanting to now why so that he can fix it. His kind and loving nature wants to keep me from experiencing the ugliness. It’s in those moments that I get angry for the years I ‘wasted’ and lack of gratitude. It isn’t fair that the best years of my life, prove to be the most unhealthy.

But this is where faith steps in, the belief in something that is unseen. Our future is just that, unseen. No one knows or can predict what tomorrow holds. In sickness AND in health, we aren’t promised a tomorrow. It’s in that promise that I made, MY vow to love my husband in sickness and in health, that I understand that it wasn’t a promise of his sickness or his health or mine. We promised. WE have sickness and health. WE have better or worse. We promised.

It’s on that promise, that I will stand – or lie down in this instance – to pursue my sickness. I will take my 2 Xanax and cowgirl my way through an MRI, that I dread!!! I will seek answers and pursue treatments as my promise to him. No questioning my vows, but answering the call to love, all the days of my life.