Roller Coaster of Life

Life is a roller coaster. There are many ups and downs. I like to really focus on the ups, but sometimes it's not always possible. Right now is one of those downs.

David was diagnosed with cancer in August 2001. On April 2, 2006, five years after living a fulfilled life, he came home on hospice. It was the beginning of a ten week process that still resurfaces as a bittersweet memory every spring. However, like in 2006, life doesn't stop when April begins. And no matter how much I stare at the clock, time does not slow down. In fact, it almost seems as though during this time, my plate gets fuller as though I am being pushed to the limits and tested. I know that God would not give me more than I can endure and many times I have to take a step back and realize that I can do all of this and more. That is the strength of a caregiver...we keep enduring.

And I know that I am not the only one going through this. I know that at any given day, at any given minute, even second, there are people feeling the exact same feeling I am right now. And that is what gives me hope and strength to continue,.

I am back on my way up.

David & I in 2005 enjoying time together because we knew time was short. Behind us is a picture my daughter, Faith, drew of our family.

Big Words

"The heterogeneity of the vitreous humor on T2 weighted MRI sequences is pathognomonic for sticklers syndrome which is a relatively common collagen disorder."

What does the sentence above mean?

A friend of mine is a radiologist, so I asked him to give me a sentence in what I refer to as "doctorese," which is my term for the language that doctor's use, that no one except those in the medical profession understand.

I asked him what that statement above meant. He wrote "Your face is flat due to an inherited disorder of your collagen fibers that make up all the soft tissues in your body."

So that seems basic enough, correct? No. I still don't know what this TELLS me. Is this bad? Is this something I need to worry about? Since it's inherited, does this mean my children will have this? Collagen is fat right? I have fiber in my body?

I asked him to break it down even further. He sent me the Wikipedia article for Stickler Syndrome. I told him I wanted his break down of the information. He then said, “Nothing is to be done with that. They usually have poor eye sight. That's really it. They may have mitral valve prolapse which may put them at increased risk for heart failure. They also tend to get arthritis."

Do you know what a mitral valve prolapse is? Do you understand heart failure? Arthritis? It seems one question is answered, with new information that I then don't understand.  

Health literacy is defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." (NNLM.gov, http://nnlm.gov/outreach/consumer/hlthlit.html)

This means reading, listening, understanding, and decision making.

A problem arises when people need to make decisions based on information given to them. How can they be expected to make good decisions, when the information is difficult or impossible to understand?  Regardless of your socio-economic background, health literacy affects everyone.

Doctors are full of knowledge, and have the skills to save lives. We as patients want to understand what they are doing to help us. There needs to be a communication bridge between the doctors and the patients, to make sure the best care is given and how it will happen is understood.

 Do you have experiences like this?

Warriors in the Struggle

Being on the frontlines has kept me away from blogging, but I am back because I realized that for change to occur reports have to come back from the frontlines. I am the voice of the war occurring in health information technology.

My first post gave some background about how I became an advocate for Health Information Technology (HIT). But what you don’t see is why I continue this journey. The original flame that was lit was due to my husband, David, and his experience with cancer. However, I meet people and hear stories that continuously fuel my passion.

A dear friend of mine, Donna, told me a story about herself. She has been dealing with chronic pain issues for many years and has been to a lot of specialists and has been tested for many conditions. When she started looking for answers to her pain, it was 2005. During this time the field of HIT was just developing, so she carried around an accordion folder that held all of her test results, bills, correspondence, and actual copies of her tests on CDs. She was constantly fighting with health insurance agencies about what tests were done and whether or not she had paid for tests and co-pays, which is why she began hoarding all of her health information. She carried this accordion to every doctor’s visit, no matter what it was, because she found that none of the doctors knew about what the other doctors were doing to assist her in diagnosing the source of her pain.

It took her seven years to be officially diagnosed with Fibromyalgia. Donna just celebrated her 28^th birthday. The idea that it takes seven years to diagnose someone is obscene but happens all the time. When looking at forums where patients talk, it is clear to see that this is a pattern. On each of these forums everyone wears the badge of a warrior, indicating how long it took them to be officially diagnosed. I KNOW that with the use of Electronic Health Records and Health Information Technology, this experience would have only been a small battle versus the long war that people have to fight. Donna’s health issues could have been identified earlier, she could have been placed on medicine, ultimately understand what was causing her pain, and participate in major health changes to better her life.

Donna has put down her accordion folder and picked up a new set of weapons in the fight to empower others. She works with me now educating people about Electronic Health Records, Health Information Technology, and Health Information Exchange. While she still fights the battle with her health, she has joined in the struggle to get the word out that there is hope and health IT can be a powerful weapon for change.

I know there are limitless stories of individuals who have lost valuable time due to the lack of effective use of Health Information Technology. I want to hear your stories. I want to be your voice. Tell me about your struggles.