Advocacy: You'll Never Walk Alone

I have been trying to figure out my purpose in all of this.  Then it dawned on me.  I have become a Medical Advocate.  I have been placed in this role several times in my life, not realizing that my life always seems to steer this way.  As an Occupational Therapist, I was an advocate for my patients. I was a therapist that always explained things in full detail to my clients, and often gave them educational material for support.  I wanted to make the transition during this difficult part of their lives as painless as I could.   It was up to me to speak for them in our weekly rounds, to make clear their medical needs.  Did they need a longer length of stay?  Was further care needed for them after discharge?  Did they need assistive devices?  I had to document my thoughts well for insurance and for the attending physician, because if their needs were not well articulated, it could affect the life of the person for which I was advocating.

I left that role when my children were younger, feeling the need to be with them during their impressionable years.  Little did I know that I would be once again thrown into the responsibility of medical advocate.  In 2006, my daughter was diagnosed with Epilepsy.  I was horrified by the diagnosis, but I think I was even more horrified by how I was told.  She had been given an EEG prior to seeing the pediatric neurologist.  It was just my daughter and myself at the appointment.  We had never met him.  The doctor arrogantly strolled in the room, never made eye contact with us, and loudly proclaimed that she had epilepsy, and her EEG was severely abnormal.    She would most likely not outgrow it, and she needed to be put on medication immediately.  Here is the prescription; you need to make another appointment.  He left the room as quickly as he had entered it.  I was dumbfounded.  I could not believe the harshness of it all.  My daughter, who was 8 at the time, did not understand his words, but she certainly could tell something was wrong by the shock on my face.  I could not believe I was not given any educational material.  Not a nurse, a social worker, or any one came to explain to me what was actually being said.   I could not believe we were being thrown into this alone.  I was a therapist with some understanding of neurological problems, and yet I still felt I needed education.

I, of course, poured myself over the computer, found wonderful support groups, and met other moms that were dealing with the same situation.  They shared their stories, which made me realize I really wasn’t alone.  My daughter went 3 years battling getting control of her seizures, mostly because the doctors would not listen and kept prescribing more and more medications that were wrong for her.  We went through 4 neurologists until we finally found one that listened.  However, we came to another road block.  We had finally found the right medication, but insurance refused to pay for it.  I fought tooth and nail to get the one medication that finally helped to be covered by insurance.    I found a well worded letter can still do the trick.   She has now been seizure free for 1 year and 7 months.   

I did not want others to have to go through what I had, with the feeling of nowhere to turn.  I took the lead from the mom’s that had shared their stories with me, so I started a carepage for her.  I was advocating for her, yet helping others along their journey too by documenting our successes and failures. 

I was beginning to think it was time for me to possibly return to work, or find a volunteer job.   However, my life once again had other plans.  I had my severe adverse reaction to Levaquin, and here I am again.  I am a medical advocate once more, this time for myself.  The hours of research, doctors appointments, bills piling up on my kitchen desk, and the insurance fights have begun.   As you can see I have again decided to document my trials and tribulations.  I want to warn others of the dangers of Fluoroquinolones, and yet help others going through this know they are not alone.  I want to share personal stories, because those were the ones that seemed to help me most with my daughter’s diagnosis.  

Not long ago I watched HBO’s Temple Grandin, about a remarkable woman’s journey through Autism.  Two scenes in particular really moved me.  One, when Temple and her mother attended an Autism conference; Temple proudly stands up and tells the audience what it is like for her to have Autism. You could see the hunger of the other parents wanting to learn from her.   She owed all of her success to her mother’s advocacy and pushes to allow Temple to fit in.  It made me feel proud as a fellow mother and advocate for a daughter.  I think I even sat up taller on the couch during that part. 

  

The second was at Temple’s college graduation.  She had overcome so many obstacles and was speaking in front of all her fellow graduates.  With the utmost confidence, Temple starts singing “You’ll Never Walk Alone”.  To me, it explains perfectly the reason why I have been a medical advocate during my career, as a mother and now for myself and others with Fluoroquinolone toxicity.  I want others to know, you’ll never walk alone.   This is why I write my blog.

You'll Never Walk Alone

When you walk through a storm

hold your head up high

And don't be afraid of the dark.

At the end of a storm is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho' your dreams be tossed and blown.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.