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!!

When Everyday Life is the Biggest Puzzle

Imagine your life as a jigsaw puzzle…

The information on the puzzle box is incredibly limited. It does not tell you how many pieces are inside. The photo on the outside of the box is just blue sky, scattered with soft focused clouds. As you look at the photo on the box, you mutter, “This is going to be so difficult to put together.” Every puzzle piece looks identical in color. The theory, in any time you put together a puzzle, is that the puzzle will look EXACTLY like the photo on the outside of the box. Your hands steadily open the box of the puzzle-of-life and remove the lid to see the contents. Much to your surprise, there are pieces of strange colors and of strange images, not all blue sky as you assumed.

My strategy, in putting together a puzzle, is to search out and place all the straight edges and corners to build the framework first. The beautiful blue frame stares back at you with the promise of many days yet to come. Your logical brain knows that life isn’t always going to be blue skies, it is a certainty that there may be clouds, maybe even a storm or two. As you fill in the pieces, you uncover a piece with an image of children. That’s pretty cool, not sure where they fit in, but it makes you smile. As you stir through the pieces, you discover an image of a lovely garden, again not sure where it fits, but pleasing nonetheless.

As you stir through yet more pieces, turning them right side up, you find a heart. Not just any heart, this one is broken. Oh! if only you knew where it fit, you could possibly prevent it from breaking. The next piece turned over, a hospital bed. You can assume that it must fit before the kids, after all, children are born in hospitals. But this piece is not even shaped like any of the other pieces. It is so random. You keep it within eye-line, always in sight, wondering when and where it fits.

You realize that you have excruciating back pain, you pass it off as having been sorting and searching for so long. Some hot packs and Advil with surely take care of it. There is a much bigger task at hand, making sense of this chaos. Hours and days blend together, as you piece together the story of your life. A little piece with a pill comes to sight, and another, and yet another. It seems as though the medications have multiplied and don’t resemble each other. You group them together and push them to the side.

You’re surveying the pieces before you. Some are brightly colored and some have dark murky images. A gloomy image of two people sitting across from each other in what looks like an office setting. These people do not look happy. One person with their head in the hands, the other holds a clipboard and pen. Unsure of what this means, you begin a new section of puzzle pieces.

Another shadowy piece is a bottle of poison, or so you think. When you look closer at the label, it appears to have some biohazard looking image on it. Is it a warning of something dangerous? Off to the side with the other dark pieces…

If only we were able to see all of the pieces of our life laid out in front of us. To see the timing and plan, the purpose of it all. Our sense of control would be so overwhelming, we would manage and manipulate the puzzle to fit our plan. Our way. Had I known that the piece with the broken heart would surface more times than I can count, I would have maybe withdrawn. Not allowed myself to love so ferociously. That would have been the worst, not the broken heart, the lack of passion in my life.

There is no way to compartmentalize life. There is no way to neatly organize our darkness or create nice, neat edges. The dark image of the people facing off in an office could represent many facets of my life. I’m not exactly sure which piece is which, perhaps it’s the conversation with a lawyer during my divorce. Perhaps it’s the conversation with a doctor that is just not listening to me or hearing the cry of my body. Perhaps it’s the conversation with a trusted friend that doesn’t understand or believe the abuse of my past. In any scenario, I’m was left feeling defeated and dark.

The dimness of a hospital bed, in this puzzle, served my parents, so many days and nights sitting around a hospital bed praying for better days. Cancer and disease are beasts that we try to tame. Days into months of lingering illness and pain. Some never know the victory over the beast. Little did I know, that in their death, I would learn about strength.

The ‘pill pieces’ have been present most of my adult life. I’ve battled depression and anxiety to epic proportions. I’ve had seasons of quiet and seasons of mayhem. Those manic seasons come and go, but never completely disappear. It’s in those season that I’ve craved peace. Sought it out and chased it. Peace is elusive. What you are certain will bring you peace, may be the core of chaos. While it is imperative to seek peace, seek discernment and wisdom equally.

In your busy-ness of life, you learn to pass off the little moments of discomfort as nothing more than nuisance. The back pain that stops you in your tracks can be attributed to a zillion things. Your weight, poor posture, an occupation on your feet all day. Never would you assume that your back pain may be the root of a deeper more invasive disease. Too busy to give it light, you pass it off as that, passing. When putting together the pieces of a puzzle within a puzzle, you discover you have an autoimmune disease, Ankylosing Spondylitis.  It’s when you understand your ‘biohazzard puzzle piece’ is not a warning of danger ahead, it is the treatment for the disease that you [and multiple doctors] failed to see. It’s the victory and defeat. You now have a name for the disease, but the treatment is another chapter in illness that you wouldn’t wish upon an enemy.

But in this tabletop view of life, you can see that these dark puzzle pieces are but small segments of a much bigger picture. Yes, they are visible, but they are surrounded by light. Not always sunshine, but light that gives purpose and life. Your life is that, purposeful. Breathe in the moment of right now. Un-burden yourself of the chaos and quest for having all of your pieces organized just right. Let go the pain of a season of dark days. Look for the lessons learned in those moments. Yes, even the darkness has a lesson to be learned. Sometimes it’s as simple as learning to not do that again, or it’s as complex as finding the voice within to stand up for yourself or a loved one in their dark season.

No, sunshine and blue skies would be too boring, for this girl. I will lean in and learn about love through the pain. Healing in the brokenness. Learn to slow down when my body tells me to. Life is to be lived, discovered anew. Throw the box away! Throw away the picture in your mind of how it should be. And, if life ever gets too blue sky, take a Sharpie and write cuss words across the pieces. Live life – out loud!!

 

 

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]

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.

 

Pink About It

I LOVE the color pink. Some might even say, it’s my signature color. But I don’t actively support Pinktober. Now, before you decide to lynch me, allow me to explain..

I lost my mother to Breast Cancer, she was diagnosed January 2001 and died the following January. I was one of her primary caretakers and advocate with doctors and surgeons. I asked the questions and challenged their ‘opinions’. HER aunt (my great-aunt) was diagnosed and I’ve had my own scare. (Benign tumor removed in 1998) So, I am up close and personal with this bitch of a cancer.

I am a cheerleader for those who have fought valiantly, and will wave their flag any/every day. While I believe there needs to be an awareness raised and a cure found, I don’t believe all pink ribbons are created equal. So many manufacturers rely on the fact that we, as consumers, will buy pink ribbon EVERYTHING! ANY company can put a pink ribbon on items and never donate a dime. Many companies will make a one time donation per campaign, no matter how much revenue that pink ribbon item generates. Meanwhile, a disclaimer is placed on an item…“A portion of the proceeds from this item will be donated to help fight breast cancer.” It is not clear what breast cancer organizations would benefit, how much money they would receive, and what programs or work would be funded by the donation. I know of one particular organization who refused a donation from a BIG fundraiser, simply because it came from a “motorcycle club”. Heaven forbid they be associated with such generous riff-raff.

I have been a hairstylist for nearly 30 years, I have seen the changes with in our industry with pollutants and VOC restrictions. But I’m still boggled to see pink cans of hairspray in October. A product that has known toxins and chemicals being pimped out for a well-meaning consumer!

And let’s talk ta-ta’s… The definition of a woman does not lie in her boobs! Cheers to the brave who have posted, “why keep them, they tried to kill me!” And going braless for a day in the name of awareness is a huge slap in the face to women who have undergone mastectomies. Free-boobing and nipple popping  reminds survivors that they have lost something. It sends the message that they aren’t as “sexy” as all the luscious Instagram photos. Not to mention the pain that may be associated with a survivor going braless. I’d much rather see a bad-ass survivor celebrating her scars with tattoos and a fist raised in victory!

You really want to make a difference? Be a voice for someone who is fighting. Drive a patient to their chemo appointment and sit with them while the poison is pumped through their body. Volunteer to babysit for a patient so they can rest. Prepare a meal, better yet, organize a meal train for a week of meals for a patient. Pray diligently for a family struggling through the financial trainwreck the ‘cure’ has cost them. Host a fundraiser where the funds go directly to the family for expenses.

As I said before, I will be your biggest fan and cheerleader for your personal victory against Breast Cancer. I will always love pink and celebrate the fighters! I will continue to pray for a quick end to this bitch of a cancer; of ALL cancers!!

 

 

There! I’ve said it!

My mouth tends to get me in trouble. Perhaps it’s a snarky comment that escapes before my brain engages, or it’s my warped sense of humor that maybe only one or two people on the planet understand. But the other day my mouth said something that shocked even me, in a short brief moment, a revelation was sparked.

I recently heard of a colleague who was having a difficult time with reoccurring kidney stones. I wanted to reach out an offer a nugget of encouragement and inquire if he was under the care of a specialist. I wanted to offer up the name of my nephrologist, as I really respect and appreciate the level of care he gives. As my colleague answered no, he did not have a doctor; he surprised me with a simple question in return, “do you have a problem with kidney stones, too?” My answer was quick, unplanned and blurted out, “no, my kidneys are failing.” Gulp! I said what? I’ve known it. I’ve lived it. But I’m not sure that I’ve actually said it. My kidneys are failing.

Two years ago I went to my nurse practitioner thinking I had an infection (as I’ve had 100’s in my life time) She discovered that the lab numbers were alarming and ordered more tests, and more, and ultrasounds, and..ugh a lot of stuff! She referred me to a kidney specialist and hugged me and explained that yes, she was being aggressive and that I am fortunate to catch it in it’s early stages because  most people don’t get a diagnosis until much later in the disease.

I was diagnosed with Chronic Kidney Disease. I’ve had issues all my life with kidney and bladder trouble. I was told that in my toddler years, I spent some time in the hospital with a ‘kidney issue’. I’ve asked relatives if they knew any details, but those who knew it best are gone now. My diagnosis didn’t really surprise me, but I don’t think I really owned it as a reality. For some strange moment, two years later, my words made it very very real. I was given medication and dietary restrictions, rules and regulations. I’ve been pretty good about them. When I have been really bad….my kidney function numbers are really bad. I’ve seen the benefit of being better, and been scared by the bad. My darling husband encourages me, and has been scared with me. But I don’t think either of us has really seen the gravity of what my future may hold.

Now don’t get me wrong, I’m not the kind of girl who will just let this get the best of me. I’m not resigning to the fact that I will have to face dialysis or transplant. I know it is a possibility and being realistic about it. I also know that I serve an amazing God. An awesome healer and great physician. Whatever His plan for me, I will walk in it.

I don’t know which direction this journey will take, I just know I need to get moving. Changes take time, and I am blessed to have amazing cheerleaders beside me. I won’t shed another tear and wonder ‘why me’. I will walk in faith and ask for God’s direction. I won’t simply be a good girl, I will be a better girl and take care of myself.

So today, I will march in to my 2 year ‘anniversary’ nephrologist’s appointment and know that I have a great God, an incredible husband, and an amazing family by blood and heart! I AM blessed!

 

For more information about kidney disease: http://www.nationalkidneycenter.org/chronic-kidney-disease/facts/

{WonderWoman}