Hi Everyone,

Many of you have written and encouraged us to publish Corey’s story. My sister and I often talk about her recovery and loosely outline the possible chapters. Her therapies are just one chapter in her story. Another is not only advocating for her therapy but appealing for her clinical care as well.

Yesterday we received a letter from the Insurance Company denying a medication she needs for her bladder issues. Her Urologist chose a certain medication based on the limited reported side affects and, more importantly, the compatibility with her current seizure medications. We have been using the sample packs for a month to build her tolerance and document the improvement. The current sample is the second medication we’ve tried. The first was discontinued after 4 days due to severe migraines.

Insurance denied her the new prescription stating she needs to try a myriad of alternative medications. If she suffers adverse affects from those, then they will approve what we currently know is working. I spent 5 hours calling the Doctors office and Insurance Company arranging an appeal of this decision.

Today I participated via conference call on our 2nd level appeal for skilled nursing. The committee is comprised of a Medical Director, 3 voting members and 3 non-voting members. The 3 voting members are trained in Healthcare Insurance and Hospital administration. The non-voting members included an appeals coordinator (his job is to explain procedure to the committee). The Medical Director was a family practitioner. The Insurance Company sends Corey’s information to an outside independent physician that is board certified in Neurology and their input is sent in to the committee as well.

In addition to the documentation from Dr. Long and the Neuro Psych department at Bryn Mawr, I have an opportunity to present our day to day details of her clinical needs requiring skilled nursing.

For this appeal, I also sent documentation proving a board certified neurologist does not always understand the Low Level Brain Injury population unless they are working in that environment on a daily basis. In addition, I sent in detailed documentation of Corey’s recent silent seizures, aspiration issues through the night and her recent episode forcing me to use her suction machine during dinner last week.

I wish I could say that I remained unemotional and stated the facts clearly and succinctly, however, the conversation got quite heated at one point. I had to remind myself to be professional and not react as an emotional mother. Sadly, this process wears me down and between yesterday’s calls and today’s insulting questions…I lost it at one point. I regained my composure to pull it together at the end but we’ll see. They will be sending me their decision via mail within the next 7-10 business days.

On a positive note, the endocrinologist called today to tell us the MRI showed the tumor remained the same. This is good news as Dr. Yalamanchelli does not need to rush to surgery. In the interim we need to go back in to Wills Eye for several detailed field of vision tests. We will repeat the MRI (God help her) in 3-6 months.

The job of an advocate is ridiculously hard. My kids often tease me that my blood pressure is so low that they’re not sure I have blood flowing. When I can feel my blood pressure, we’re in trouble…I felt it rising over the last two days!

As I hung up with the Insurance Company today my chest hurt, my hands were shaking, I was physically and emotionally shaken by the lengths our conversation took to defend our need for skilled nursing; what I consider a ‘basic’ need to home care.

I couldn’t leave my home office to interact with Corey in this shaken state. She intuitively picks up on every facial expression I have. It occurred to me, I was creating this emotional state within myself. I presented the facts, stated our case and the decision will be made regardless of my reactions. Once I receive the determination I then have the right to appeal if it is not a satisfactory solution for our case. How is my remaining overwrought going to help us throughout the rest of our day?

I recalled a paragraph I recently read in Danny Bader’s book, Back from Heaven’s Front Porch. ‘…people think shifting your focus or optimism, or positive thinking, or visualization, or whatever you want to call it ~ is based on avoiding reality. To me it’s quite the opposite. It’s being acutely aware of the reality and then seeing what it would look like if it were different, seeing it in another way’…’Here’s the point. When you’re focused on reality, you’re just that, you are concentrating on the here and the now, whatever your situation’.

I could sit in the negative feelings, the anger and resentment, or I could focus on the opposite emotions; contentment and joy. This is not a switch that is easily turned on. It requires a conscious effort, talking out loud to my self, deep breathing and several moments of silence ~ I actually was focusing more on stopping my body from trembling!

Sometimes the process requires removing yourself from the physical environment in which you experienced the negativity. My hand was forced to do just this as our washer broke today requiring a trip to the local Laundromat (45 minutes away).

Caitlin and Corey had a girl’s night as I headed through Amish country to complete a necessary chore. My trip removed me from this afternoon’s reality placing me in the now. As I drove between two buggies I was forced to slow down, literally. I began to breathe not only taking in the fresh air but the beauty of the Lancaster countryside.

Today’s chapter could have been titled WTH (what the hell) but instead I will call it, Buggies, tulips and peacocks. The car ride was beautiful. The sun was setting, I had a chance to admire the spring flowers and trees blooming, I passed a gorgeous peacock casually strolling along the side of the road between two farms and the buggies slow pace reminded me to appreciate where I was. As crazy as this may sound (some might call it pathetic) sitting in the Laundromat was respite time; no phones, no questions and no one knew me.

…’you can’t get out of your current reality until you start believing that something better…a vision of a better reality…is possible’…’contentment and joy becomes real for you when you acknowledge that that’s what you want in your life’ ~ Danny Bader

We’ve already proven ANYTHING is possible and we can continue to make it our reality, xoxo