advocacy

Advocacy

Your quest for personal advocacy will be a humbling one.  I discovered that the people charged with my care weren’t taking care of me. While fighting the nightmares pounding at my door I planted my feet on the floor and stood up for myself.

To be your own personal advocate you must first realize that the only person who is going to have your best interests in mind is you.  Once you realize this, then you will have the foundation to reclaim your life.  With this you will build the walls of your new home.  Finally you will construct the roof by enforcing your boundaries, taking control of your life.

This road is a difficult one, but necessary.  If you desire to live your life by your terms, then take charge, choose who you want to be and become that person. Masters of personal advocacy made the willful choice to become who they are. Will you do what it takes to become who you want to be?

ochsner

Ochsner

ochsner

Ochsner

We traveled from Saint Louis to New Orleans and stayed at the American Cancer Society’s Hope Lodge.  There is no doubt this place was a godsend, this trip would’ve been impossible without it.

On the first day of scans we tried to find the hospital by following the GPS.  Unfortunately, the city had two streets with almost the exact same name and so we were taken to the other side of the city.  It was frustrating to say the least but we managed to make it to the hospital to get a whole truck load of scans.

Inside of the car it was cool and comfortable, but stepping outside into that muggy air was incredible.  It was strange to go from quasi spring/winter air to the summer heat.  There were stingy and buzzy bugs flying this way and that.  We walked in and registered, they told us to follow the fancy blue line.  It was the guide that would take us to the testing area.  I felt like it was like the yellow brick road, only a different color and much thinner.

They gave me a cool salmon colored bracelet.  It was that fancy stretchy tape stuff, they used it to hold the IV in my arm in place because I have a latex allergy.  Then they gave me my octreotide dose and sent me back into the waiting room to hangout.  For the next hour and a half, I drank pool water flavored beverages until it was time to get tests.   I had some conversations with the locals.  I was attempting to ascertain some good spots to eat fooduals.

Finally, the time came and I headed into the special room and laid on my back in the machine forever.  I surprise myself by the extent that I’ve gotten used to these devices. For the rest of this day and the next I spent a great deal of time in these tubes chilling out to the sound of clicks and pops.  All in all, the time spent getting the scans was quite pleasant.  If there is one thing I must say about Ochsner is that their employees are very friendly.  The hospital was quite pleasant.

Links

New Orleans

Neuroendocrine Specialist

Expectations

 

NOLA – Personal Journey

NOLA

The moon light sliced through the clouds speckling the landscape with a silvery glow. Rain dripped from the sky coating the windshield with a layer that sloshed against the wipers.  The ground was slick and my eyes were tired, the combination made the drive taxing as we drove over the enormous bridge.  In the distance, limbless trees reached for the sky behind them was an eerie blanket of crimson. As we drove into the city the haunting vibe increased, the spirit of the air was strange for my tired and wary heart.

We drove down a lonely road, it looked run down and haunted with shadows. Following the directions of the GPS to a dimly lit multi-level building, we pulled through a narrow drive way and parked in the roundabout in front of the Hope Lodge.  Our bodies were fatigued and our muscles hurt, we were finally glad to arrive.

When we woke up the next morning the vibe was literally a difference of night and day.  It was warm and comfortable; the atmosphere was loving and the heart of the land was good.  The contrast of the land’s spirit was unlike anything I’d ever experienced.

We spent all the time we could exploring and enjoy the beauty of New Orleans.  Though the swampy, bridge saturated city was a fun adventure the air was thick and hot.  Each breath was such a challenge to breath I found myself panting for air most moments.

Though the NET doctor failed to meet my expectations I have the wonderful memories of this enchanting city.

Links

If you would like to continue reading about my NOLA adventures, or would like to read more about personal advocacy feel free to click on one of these links.

New Orleans

Hope Lodge

Sight Seeing

Ochsner

Discovering

Discovering Personal Advocacy

Discovering

Discovering Personal Advocacy 

Before discovering personal advocacy, our life drifts within a void.  Slowly and without purpose we amble toward the ever-consuming maw of oblivion.  In these moments, we teeter at the edge of destruction.  Sitting on a wall like old humpty dumpty waiting to fall.  If we remain here we will break and we will leave our treatment to hands of all the king’s men.

Discovering personal advocacy doesn’t change the disease, it doesn’t change the nightmare of your circumstance.  Instead it transforms your treatment and the amount you are willing to endure.  Old humpty dumpty will still fall, he will crack and break and in the eyes of some will be rendered useless.  However, through personal advocacy we get to discover that old humpty dumpty is not an egg.  He isn’t a he, rather an it.  It was a cannon.  Instead of just letting any old joe try and fix it, shouldn’t we find a specialist for the job?

Discovering

Once on the road for personal advocacy we find its one of twists and turns and dead ends.  It’s a path of heart break, loneliness and frustration.  As we move forward, taking a step then another, we begin to fill that void.  We become powerful and we stuff that hungry maw with our fist like Tyr did with Fenrir.  I want you to do it better than Tyr, let’s keep the hand while defeating the beast.  As we take a stand we step back away from the cliff, no longer will we teeter at the edge of destruction.  Instead we look out over the horizon and bask in the glory of the world.

Many Steps

This achievement of personal advocacy isn’t born from a singular moment of pain.  It is a tool that has been hammered into existence through a lifetime of abuse and neglect.  It is an artifact of Hephaestus, the crippled creator.  Like he, we will use the tools forged in the fire of our own hell to grant us the greatest life we can live.

Discovery

If you gaze into the past you will see you’ve already taken steps towards personal advocacy.  There have been numerous moments leading to this point.

In my journey, there have been many steps and moments that helped unlock the door to my personal advocacy.  These ranged from suicide attempts to the enduring the horrors of Ino my caretaker.

Look back at your steps, see the moments and use them to take control of your life.  Be powerful, take charge and become your own personal advocate.

Links

Discovering Hope

 

New Orleans – Personal Advocacy

New Orleans

New Orleans

There hasn’t been a post for a while because I’ve been preparing for my trip to New Orleans.  In this mystical land, I’ll be taking a series of scans and visiting with a neuroendocrine specialist.  I can’t change the past, but I can have a leg up on the future.  This journey will give me the opportunity to further explore my disease, have a conversation with someone whose informed and can explain the results of my tests.

Recently I had my Gallium 68 scan.  Getting what you want comes with a price, the price I paid was in the form of a few uncomfortable flashbacks. The preparation room reminded me of my hospital stay.  There were sights, sounds and smells that transported me back to the nightmare of my post-surgery experience.  It was terrifying and I was alone.  Once they stuck me with the needle I remembered that these horrors are easier to face when someone holds your hand.  But, like many cancer moments, you learn to hold your own hand.

This journey and the Ga 68 scan are two moments on a very short list of wins in my cancer journey.  Though getting the Gallium 68 scan was a success it was followed by expected ineptitude. This ineptitude manifested through my general oncologist’s inability to read the results provided to him.  The information he told me over the phone makes me think he barely read the results at all.

Personal Advocacy Tips

Four valuable lessons I’ve learned about personal advocacy.

  1. If you have cancer, skip the generalist and see a specialist.
  2. Demand to see the test results and push to speak with the person who interpreted them.
  3. Get a second then a third opinion.
  4. The best intentions don’t always lead to the best results.

Best Intentions ≠ Best Results

Some time ago I was approached by two people who were angry about my cause. They were reading my computer screen from behind while I was at a coffee shop.  These two-people moved to sit next to me then stared at me until I addressed them.  I learned they were malpractice lawyers who represented doctors.  Their words were venomous and disrespectful toward me.  They told me that the doctors they represent really care about their patients and the intent of these doctors was to help.  They then went on to tell me I was wrong and a bad person for trying to help others achieve personal advocacy.

Clearly, we can see that even when a doctor means well, that doesn’t equate to doing well.  If your mechanic cut your car’s brake line while trying to fix it, would you let bygones be bygones if it caused you to crash your car?  Would you still use the same mechanic if they intended to fix the car but damaged it more?

My intent isn’t to pave the way for lawsuits.  I want you to be more informed.  If you know how to ask the right questions you can avoid many of the holes in life. Perhaps if you know something about car repair you could avoid hiring this terrible mechanic.  If you knew more about your health you could side step a horrible doctor, or an unnecessary treatment.

The doctor is there to serve you, you are their boss, make sure they know it. Treat your body like a business, one that pays with pain. Educate yourself so that you don’t pay your doctor more pain that he or she is worth.

I look forward to starting my trip tomorrow.  I thought that by now I would be done with my cancer journey and I would be writing the end of my novel. Instead it’s another kind of trip, one of new beginnings.  New Orleans is a journey into the world of second opinions.  This doctor’s opinion is not the ultimate truth, but it is better than the one I have been given.

Advocacy Links

My journey to New Orleans marks a major milestone in my Personal Advocacy journey.  If you would like to discover what has brought me to this point feel free to follow one of these links.

NOLA

Second Opinion – Personal Advocacy

Hope the Mouse

Fight Abuse – Boundaries – Personal Advocacy

Deity of Cancer – Personal Advocacy

Abuse – Personal Advocacy

Hope the Mouse

Hope the Mouse

Hope the Mouse

So much our time is focused on cancer that we often become it.  Every time I have a test or a scan my heart shutters and my nerves shake.  I’ve grown so accustomed to bad news that good news has become the bad.  Hope the Mouse is a representation of my fear, anxiety and guilt when it comes to the idea of overcoming cancer.

I dread the day when all of this is over (if it ever is).  The reason is because it’s like dying, when its over I will have to begin a new life, change is hard enough for most, starting over is another matter entirely.  When I was first diagnosed with cancer I experienced the death of my old life, once again when I discovered I still had cancer and again once cancer became my life.  These moments are rough and destructive to the soul, they hurt and often never stop hurting.

Without cancer I’m afraid I won’t have the same drive and purpose.  I really want to be a part of a cause that makes the world a better place. The thought of losing traction of my dream is a nightmare.  Having a singular purpose can be overwhelming, but it is so much more rewarding than the underwhelming life I once had.

I’m afraid of being cured, I’m afraid of not having cancer, I’m afraid of surviving.

These are the thoughts that plague me when I think about hope.  They’re the feelings that haunt me.  I want to live a long happy life, but the thought of Hope the Mouse is terrifying, and when I see her it makes me want to scream in terror.

Hope is not your enemy

I know that Hope isn’t my enemy.  She is a valuable tool that pushes me forward every day.  I may be afraid of her at times, but without her I can’t experience the experience of life.  Without this little mouse I wouldn’t know how to ask why, I wouldn’t have the force of will to continue to walk and I wouldn’t have the heart to help others.

Hope is the true engine of my existence.  My force of will determines who I am. With these two powerful elements I can overcome anything. When, not ifWhen I overcome this cancer I will continue to help others.  Ultimately it is what is on the inside that determines who we are and what we have to offer.  On the inside, I have Hope, the cute, yet terrifying mouse.  She has guided me, continues to guide me and will always guide me.

Links

If you would like to continue your reading journey consider some of these fine links.  I’m sure you will find something that will fill your fancy.

Cancer – Personal Advocacy

Caretakers – Personal Advocacy

Abuse – Personal Advocacy

 

Critical Awareness – Boundaries – Personal Advocacy

critical awareness Critical Awareness

What is Critical Awareness?

This question is equally important as how boundaries improve critical awareness.

So what is critical awareness?  In this instance we are going to define it as empathy.  To adequately define empathy I want you to imagine yourself as someone else.  This is more than standing in their shoes or seeing the world their their eyes.  Close your eyes, separate yourself from your reality, take a moment and think about how they might experience the world.  What influences might affect the way they interpret reality?  How could their bias alter how they see and interact with others?  What do you think their intent is? This is one way to empathize with someone.

To empathize you aren’t feeling this person’s emotions. To feel what they feel is to sympathize, sympathy is a pathology, a disease of critical thought.  The most effective way you can love another person, while loving yourself is stop sympathizing and start empathizing.

How do boundaries improve critical awareness?

Through personal boundaries you can more effectively empathize, which will help you identify and interpret the filters and boundaries of others. This will increase your ability to communicate and protect yourself from dangers inside and out.

How does critical awareness improve boundaries?

People who use critical awareness only experience emotions relevant to them. This effective framework prevents others from manipulating them.  They have drawn a definitive line in the sand between their feelings and those of others. This boundary enables them to distinguish their thoughts and feelings from the emotions, thoughts and manipulations of others.

Links

If you would like to discover more about personal boundaries and empathy feel free to click on one of these amazing links!  I’m sure your will find something to fill your fancy.

Introduction to Boundaries

Fight Abuse – Boundaries – Personal Advocacy

If you would like a more immersive experience take a look at the following link.  This is a fine introduction to the world of cancer, or at least how my journey begin.  It is a podcast so you can kick back and listen to it as you are doing other stuff.

Power Advocacy Podcast 3