my legacy

Living with a chronic illness is like sitting on a pottery wheel as a soft lump of clay. It doesn’t matter how long I sit there or what shape I am as eventually, I will be reshaped as the hands of my illness continue to touch my life.

Aspiring to build character despite my illness, I am hopeful that at the end of my life my legacy will be, “She fought to live each day with grace while encouraging others to do the same.”

not everyone is meant to be in our lives

Having the support of my family is a pipe dream especially when it comes to my health. When I say “my family” I’m referring to my personal immediate family and all of my family through marriage, divorce and the list goes on and on. I’ve never blogged about how the majority of my family deals with my illness. Quite honestly, it’s not important to me.

Harsh, right?

How do I deal with those family members (less than two) who choose not to try to understand or accept my illness? I have no problem exiling them from my life because their judgement of me even before the diagnosis of my illness was too heavy for me to deal with. Making the decision to pluck someone from my life and give up the relationship is an easy decision for me. Since we never really had a relationship, it feels better than okay to oust them from my life.

This past week I experienced once again what felt like my heart being wrung out like a wet towel making me feel humiliated by insensitive actions and words. That’s when the line was crossed for the last time. I walked away without any desire to look back.

I set myself free

facing the darkness


Facing the darkness admitting the pain, allowing pain to be pain, is never easy. This is why courage-big-heartedness is the most essential virtue on our spiritual journeys, because if we fail to let pain be pain, then pain will haunt us in nightmarish ways. We will become pain’s victim instead of the healers we should become.

- Matthew Fox

from the inside out

Relentless dwelling of my illness manifested inside of me. I was going nowhere. I needed to find a strategy to overcome this manifestation building inside of me as I was absolutely miserable both physically and mentally. My journey of acceptance thus far has been a bumpy one, but my future goals are hinging on me embracing acceptance.

Acceptance of my pain started on the inside and moved its way out. I tapped into my authenticity and embraced my illness. Do I passionately love my illness? Well, I’m working on it. It’s work in progress. But as Bozoma St. John said, “Always be yourself, unless you can be a unicorn.”


IMG_8958The worst part of battling my body is between what I know and what I feel.

Although it has taken me years, the time has come where I am finally comfortable with my illness. My comfort zone now embraces acceptance of my illness. I took a risk and removed myself from the known. With time, I’ve been able to travel a new route allowing acceptance into my journey.

It’s been a definite battle, but one I’ve found a way to win.


aching for home lives within me

The dusty memories that are tucked away deep within me are always illuminated by the thoughts of my childhood, home.

My absence from home has always made my heart grow fonder. The instant I stand barefoot in my parents’ yard with my dad’s meticulously curated carpet of lush grass, I find pure bliss which triggers a kind of serenity in my mind. The serenity of home. Whenever I return home every single one of my senses come alive with the memories that had all been set against a backdrop of a little town in western Pennsylvania.

Those sensory experiences from my parents’ yard are home. They induce a rush of happiness that makes me ache when I’m away. I welcome this twinge of melancholy because it means I have found my happiness full of love, light and the treasures of my life.


unknown paths


20140731-021628-8188101.jpgThere are so many things that I have yet to learn about myself. Everyday that I am alive is another day I might find something out about myself that I never knew.

As I walk my path, it helps me to see the world in a different light. When I think I have myself on the right path, there’s always an unknown path that appears. You will always find me taking the unknown path.

Regardless of the individual paths we take always remember to respect one another, create peace my friends!

Change Around The World. I am dedicating today’s Blog to my friend Heila in Israel @ -


simple living, transforming my mornings

If my body allows me, I spring out of bed in the morning. If I open my eyes and my body is screaming, I tug the covers over my head while punching the snooze button a few more times. As much as I hate to admit it, I definitely fell into the latter category all too often.

I transformed my mornings and set a precedent for how they should be. A bad start is no doubt of my own making. It was all about changing my habits and perspective. I turned things around and now start my mornings off right. It’s really made a difference in my day-to-day life. I’ve made them count, feeling fulfilled and refreshed.

By making the most out of my mornings, I enter them with a positive mindset. Rising early at the same consistent time, allows me to fully embrace the start of each day. It’s become a habit. I always take time first thing each morning to reflect on the past two days and look ahead at the next five days.

I look forward to waking up early as it creates a positive memory that will stay with me and influence my mood and body throughout the day.


20140727-184956-67796398.jpgChronic pain is a heavy burden that has affected many aspects of my life on a day-to-day basis. Daily, I sense a growing distance between who I am now and who I used to be.

I’ve changed both physically and psychologically – at times unrecognizable to myself. I have lost complete interest in spending time with family and friends and participating in social activities. Socially withdrawing is due to chronic pain and the fact that I am no longer able to do the things I use to be able to do or want to do.

It’s not easy dealing with chronic pain. Doing it alone is even harder. Although I suffer in silence, knowing I am not, may be the first step in breaking the isolation I live in.


The intensity of living day-to-day with chronic pain makes it hard to breathe, from my lower back to the tips of my toes; numbness, burning, screaming nerves, muscles tied in knots, twisting, turning, from side to side like figure 8s, non stop, rolling up and down my legs. From my neck; burning nerves, muscle spasms and shrieking nerves. Chronic pain has stolen my ability to be on my feet and to walk. It’s pain that makes me want to walk away from my body!

a basic life necessity

20140725-133754-49074161.jpgHygiene is a basic life necessity. Maintaining personal hygiene is a big problem for anyone who struggles with a debilitating illness.

When my life was simple, showering was a place of comfort and rejuvenation. Showers happened whenever I felt like it when I was healthy. Jumping in and out went out the window when chronic pain took over my body.

Chronic pain complicates things when it comes to showering. When my body hurts to move and pain and fatigue leave me barely able to stand, showering changes from a relaxing retreat to an extremely dreaded chore.

I learned quickly the importance of planning my showers for a time when I’m not totally worn down with pain. I schedule my showers for a time when I can decompress from the pain afterward.

Chronic pain doesn’t just complicate things, it complicates everything.

learning to laugh at the little things in life living with chronic pain

20140724-112135-40895927.jpgKnowing everyone likes a good laugh now and then, I’m going to share with you the details of my private personal space . . . my arse!

As I attempted to charge my spinal cord stimulator Sunday evening, I found myself screaming ouch as I touched the battery site implanted subcutaneously in the very upper right portion of my arse. As I looked in the mirror I was horrified at the sight of a rather large amount of burn marks spread across both arse cheeks.

I was convinced it was an electrical burn caused by my implanted spinal cord stimulator. Not!

The burns were caused by me leaving a gallon size Ziplock bag full of crushed ice on my arse for over 2 1/2 hours Sunday afternoon. I use ice daily to numb my nerve pain as it is extremely calming. I simply did not realize that I had used it for over 2 1/2 hours straight. Drum roll please . . . I cannot sit. I cannot lay on my back. It hurts like hell. Ummm, yes, I have frostbite on my arse!

It’s those little things in life that help me keep a sense of humor living in chronic pain. Just because I laugh at myself doesn’t mean I’m not hurting. Don’t mistake my words as a sign that I am getting better. Tomorrow I may not even be able to get out of bed.

Oh the things I will do to give my body a rest from chronic pain! A day in the life of me!

my life day-to-day

Those who know me understand that I don’t discuss my health issues for pity, sympathy or attention. I talk about it because it’s a huge part of my life whether I want it to be or not. I discuss it to help others who are dealing with the same hurdles. To inform. To educate. To be matter-of-fact. To explain. NOT to get pitied, babied or fawned over.

In the blink of an eye my life changed due to chronic pain. Being betrayed by my body was awful. It’s a battle I may never win. And yet, I fight it day after day. It wears me down. Even if I try to ignore it, the energy it takes to do so is exhausting. On my worst days, chronic pain leaves me feeling beaten and trapped. These are the days my strength and resolve are put to the ultimate test.

I have learned to cherish my very existence.

push on

20140714-113638-41798850.jpgOur ideas of what we want our lives to look like tomorrow or years from now are visions. As we aim for the finish line we accomplish things one after the other and suddenly, without warning, we hit a bump. As we fall it sets us back a step. This obstacle is used as fuel to restart the fire. Failure is not an option.

NOTE TO SELF: Find that inspiration, push on!

invisible circle

20140718-231652-83812082.jpgI pretend an invisible circle is surrounding me. It catches little pieces of my life that help me stay pure and they remain there until only I decide it’s time for them to go. Some stay forever. Some for just a moment. As I hold on tight, I realize it is the happy things that are keeping that invisible circle connected.

the cycle of chronic pain

20140713-192215-69735093.jpgCHRONIC PAIN has a life force all of its own.


I am in CHRONIC PAIN and cannot sleep which leads to weariness the next day. That weariness then leads to irritability, despair and more CHRONIC PAIN which compounds my sleep problem leading to more irritability, frustration and anger. This beast becomes a dominant force when it is left to feed on its own resources. It then grows, festers and becomes more unmanageable.

This is the cycle of CHRONIC PAIN,


floating, serenity

Imagine the most calm, serene and tranquil environment. An environment perfect for relaxation. A meditative setting free from noise and distraction, allowing your mind to slow down, unplug and focus on what’s important while achieving a deep relaxation.

Our bodies escape the stresses and strains of gravity that weigh us down as we effortlessly float. Floating causes the release of the bodies natural pain killers which block the transmission of pain signals at the level of nerve cells. Pain relief associated with floating allows chronic pain sufferers to break the cycle of pain enabling improved health.

Many business around the world utilize flotation tanks however, there is not one near where I live. With the right mindset I can perform almost the same flotation experience in my jacuzzi bathtub achieving a deep relaxation which literally breaks my cycle of pain.

loving ourselves, taking care of ourselves, putting ourselves first

We are so caught up on everything going on in our lives, we tend to leave the most important thing in the dust: Ourselves.

We have to take care of ourselves. We have to make ourselves a priority. Putting ourselves first is one of the most selfless things we can do. When we put the effort into keeping ourselves healthy and happy; to constantly strive to be the most positive version of ourselves, we will be radiating with the most beautiful energy imaginable. That energy will be put into everything we touch, everywhere we go, every person we encounter.

Let me share what I have done. My longing to walk in the water in a pool at the gym? I’ve purchased a membership, I’m walking in water and I’m loving it. That juicer I’ve always wanted? I’m buying it. Learning yoga? I’ve taught myself yoga and do it at home where I feel most comfortable.That constant chronic pain I feel? I’ve researched and continue to research everything there is to know about it. I’ve put myself on a detox plan. I’ve learned to eat the natural fruits of the earth. I’m clearing out those toxins that have been accumulating within me forever, fogging my mind and slowing me down. I’ve learned to eat for fuel, not for taste. I’ve made a personal meditation space. I’m in awe at what my body can do for me. I wake up and hug my knees. I thank my hands. I walk as if my feet were kissing the ground. I pray.

intangible moments

Acceptance of chronic pain is hard for me – it is also hard for my family and those around me. I think everyone close to me were use to thinking of me a certain way and when I presented a change they didn’t expect or understand, many resisted. Chronic pain is intangible and many find things they cannot see hard to believe.

I’ve tried everything. I’ve tried everything but lighting myself on fire, and some days that definitely seems like a good option. Despite never finding the magic bullet, I’m glad I tried everything I did. It gives me a sense of peace with my limitations – I know they really are limitations, not just things I didn’t try hard enough to overcome.

Even with pain as a factor in my life, there are things that make it better and things that make it worse. It has certainly been a learning process. Throughout my entire life I’ve always pushed myself hard. I had to learn what would get me into a bad situation. I had to learn to listen to my body.

I also had to learn to let go: Let go of my previous expectations of myself, let go of meeting other’s expectations. The same part of the brain that processes physical pain processes loneliness, which means that isolating myself made my experience of pain worse, yet isolation is where I am most comfortable.

When physical pain is an every moment experience, noticing the good things in my life is what has kept me sane. I had become impatient with my habit of pausing to notice a beautiful sky or the sounds of nature. I saw myself as pollyannaish, not facing reality. Now I understand that when daily life is a struggle a beautiful sight helps sustain me.

The little things in life, moments, have taken on more meaning in my life.

every family needs an Aunt Frannie

My heart is taking our family’s recent loss extremely hard. An unexpected illness in the beginning and then a huge blow that her time left on earth was going to be very short. Death has a weight of finality. When someone you love dies, one gets the feeling that the world should stop – take a solemn moment – remember the one who has walked this earth and touched our lives.

Her death has reminded me that we never know how much time we have with someone we love, that we should cherish that time and make the most of it while always, always showing our love for that person. Her death is a reminder of how much we should celebrate life, love every person around us and love ourselves. Let her be each of our inspirations not only for today but for the rest of our lives.

As we each waited for the call of her demise memories flooded each of us. She was a great role model – I’ll always remember her for her energy and for being such a good person. It is rare that in our lifetime we would know someone with a heart full of love such as hers. Our family will certainly miss the love she gave to each of us. She was vivacious with a permanent twinkle in her eyes.

She was the epitome of a hilarious commentator with narrative skills that were simply beyond hysterical. She’d have us dissolve in uncontrollable laughter at every family get together. She had a wonderful sense of humor and always, always made us laugh while putting smiles on the faces of everyone she met.

I’m happy to know she has been reunited with other family members in heaven. She has left a beautiful legacy for our family. She will be missed, but as we each know we will see her again which brings great solace as we mourn her death. She is now exploring the endless abundance of heaven.

Her death is proof that when it is said that the best people are often taken from us too soon that this is an adage worthy of its timelessness. So, even though she is no longer with us, I continue to try to focus on the symbolism of that fact, which is that she was by far one of the most beautiful people in my life and that is how I will always remember her.

Aunt Fran a/k/a Frannie, I will always love you!


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