One Word

2017 was the first year I purposefully set a “one word” into being, rather than offering up a well meaning, but never fulfilled “resolution”.

My word for 2017 was Boundaries. I totally lost sight of my word, allowed myself beyond boundaries that were healthy or helpful. My word rediscovered me, revealed itself where I had least expected, and showed me lessons learned while I wasn’t looking.

My word for 2018 can be found in the waiting; for my 3rd grandchild to be born, for a BIG birthday year, and the vision of a 2nd book (yet to be written).

My word can be found in the hoping, believing in better health solutions and for relationships restored.

Yes, I can safely say, 2018 is to be filled with Expectation!

Cheers to 2018! And all that you are expecting!!

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.

 

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.