It has been a great summer so far. Pretty relaxing. I got to go on my first vacation in 10 years. It was amazing. Now I am getting geared up for the fall. Sept. is Pain Awareness Month and we have a lot of events going on. As well my newest book The Pain Code; Walking Through the Minefield of the Health system will be released in print on September 1, 2012. I will post a link when it becomes available. Besides monsoons being more frequent this summer, things are going well.
Women can be their own best advocate by taking steps to lead your life. Don’t rely on others to make your decisions, do your research, or keep you organized. Start by speaking up and coordinating with the people in your life. Setting the expectation is so important and although best done at the beginning of a challenge, it is possible to be successful doing this later in the process. To become the Chief of Staff of my Medical Team I focused on 5 areas; finding the correct doctor, preparing for the doctor visit, what to do at the doctor visit, following my care plan, and staying on top of my medical billing statements. Finding a doctor that specializes in the condition you are diagnosed with can be a challenge. It is important to keep in mind that you are not looking for just any general physician but rather for a physician who has expertise in the treatment and management of your specific illness or condition. Find out if the doctor knows about your conditions in-depth is very important. For instance sometimes a pain doctor will know more about arthritis and others Neuropathy conditions. Once you find your provider team be sure not to waste their time or yours by preparing for the visit. At the appointment be assertive and listen to the other side. You need to be an expert of your issue through research and asking questions. Make sure you have a shared understanding of your treatment goals. If you want to be pain free, but the condition you have will not allow it, come up with better goals that are realistic and increase them as you get better. Also, many people have a lot of questions or information they want to share with their doctor. Bring them in writing and write them as you think of them, not at the last minute. While at the doctor’s office organize the visit by going through your summary sheet (try to keep it to one page, and typed if possible). It is important that you stay on track and focused at your doctor appointments and it helps to take someone with you. They can take notes while you are speaking with the doctor. I have come home and said, “now what did the doctor say about taking this medication” and if my husband wasn’t there, I would not have known what to do and would have had to call the doctor’s office and take up more of their time. One important thing while with a provider is keeping your emotions under control. If you are depressed but are there for another issue, the doctor will treat your mental state first. Staying focused can help you get what you want to focus on and need answers for accomplished. Finally, be specific. For instance, if you are there for pain show where it hurts: point to the areas; if it is your whole body, does any part hurt more than the rest or does the pain feel different in different spots? In-between appointments you are responsible for following through on the doctor’s orders. Be sure to do your homework so you can accomplish your goals. When you are proactive through research you can make a better decision on the options your doctor gives you and make sure you are choosing the one that is best for you. Keep track of progress and setbacks and report back to the provider on your next visit as a section of your one pager. Be sure to educate the doctor on revisits with the progress made, ability to function in daily living activities, and any new goals or research information you have found in relation to your condition. Finally, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) says, “8 in 10 medical bills have a mistake on it”. I have paid thousands of dollars in medical bills because I didn’t pay attention. I got some of the money back but not all. Before you pay medical bills, check the explanation of benefits from your insurance company against Doctor’s bill. Sometimes doctors send you a bill before they hear back from your insurance company. Your insurance company will negotiate rates for you so the amount you owe may be significantly less than the doctor’s charges. If you don’t have insurance don’t be afraid to ask for a cash discount, insurance companies get discounts and doctors can write off your discount on their taxes. Remember to file an appeal if you feel the insurance company got it wrong. For example they ask you to do Step Therapy but you have already tried and failed the cheaper medication. Using your records to show that you already went through this can save you time, money and health. Keeping organized records and file appeals when possible. Many people will say no the first time asked, because they don’t want to have a financial burden or take time out in their own life. I have a copy of all of my medical records from the past 10 years. It takes up 6 three-inch binders and is growing. If you can provide records and other researched information and go back to them, it is more likely to get them to say yes to assist with your goal achievement. Staying organized and prepared helps us get through the day with less stress, anxiety and pain.
I was on top of the world in 2002. I had my dream job, husband, and new home; and in 8 seconds my life changed forever. I was rear-ended by a 15-passenger van. This incident lead to a brachia plexus nerve injury (whiplash) that triggered a neuro-autoimmune condition to begin to attack my body. Within 14 months, I had lost my job, house, marriage, figure (gained 40lbs), and was forced to go onto state assistance and food stamps. Ever since that day, I have fought to get my life back and now in remission, I realize that life is what we make of it.
I took one moment at a time over the past ten years. I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that sharing my story will inspire others to be filled with HOPE and motivation. If I can do it, anyone can. I now share my knowledge of overcoming the challenges that we face every day with our activities of daily living.
I had to learn the hard way and now pass on my knowledge to give hope and answers to patients, caregivers and healthcare professionals. I hope by speaking out about my journey it stops it from happening to anyone else. I got through my life challenges by facing the fear of what was to come and remembering – you never stop cheering until the game is over! Attitude is everything!
One of my top 5 books of all time is Atlas Shrugged. Yes it is long, it took me 6 months to get through the whole book, it is so worth it, It teaches about social interaction. This is one of the best selling books of all time, but brings about controversial views, most love it or hate it. It covers: property rights, theory of sex, government and business, sanction of the victim, and phlosophy. When I started reading, I thought I was Hank Reardon, but after chapter 3, I realized I was not, I am actually John Galt… who are you? http://www.atlasshruggedmovie.com/ There is a characters for everyone in this book (being made into a movie (part I is out), (part II comes out in Oct), and (part III comes out next year). After reading this book I have referred back to my highlighted and pinned notes in the pages multiple times for advise. I highly suggest you reading it as well!
I am very excited to be heading off to L.A. this week for the American Idol Finale show. This will be our fourth year attending, and we are so excited. Again this year, we will hand out info on RSD/chronic pain, wear our POPF t-shirts and spread awareness to the thousands of people we come in contact with over the 4 days. We will be sure to post pictures on my FB page and fill you all in on the great experience once again. I love American Idol, and I love being a advocate for pain issues, so bringing them together is an awesome experience that does a lot of good for patients, caregivers, their families and public. I love to be in situations where I am talking to new people and sharing awareness to people who would not normally hear about the challenges of living with pain, it is those people who we need to spread the word to others who don’t know about it, and so on. This is one of those situations! Project: Let the Public Know! Who do you share the facts of chronic pain with?