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.