Archive for 'Personal Views'

I have the same struggles and needs as other chronic care patients. I face providers who don’t believe, don’t know, and/or don’t want to help. I fight for my proper and timely care… yes it takes energy. But it is less energy than going through the wrong procedure or treatment option from a provider who doesn’t know better.

I am willing to walk out when I do know better and they are unwilling to listen or learn. I am willing to not care if a provider rolls their eyes. I am willing to tell a provider they need more education and that they are not informed. I know first-hand that people like my husband’s sister in law are in the health-field and how purposefully hurtful they can be to patients in need, because of their own ignorance.

As a patient, when you call me from the hospital, I will tell you my best advice, fight for yourself, and be willing to leave to a different facility if the one you are in is not providing proper and timely care, as you know it should be.

Lately people seem to think that I get the best healthcare and have no bumps in the road.

I face the same challenges as all the rest of the chronic care patients face, the big difference in my care is I know I am paying the provider (through insurance when possible) to care for me. If they can’t do it, others can, and I move on. Please don’t be afraid to speak up or move on to someone who can assist you with proper and timely care. And if you are afraid, don’t let it hold you back from being your own best advocate.

When you have a flare or emergency situation, you have to be willing to stand up for yourself.

Case in point 1. I went to a local hospital because I was having severe pain from two kidney stones trying to pass at the same time. I got to the hospital and they brought me back to a er room really quickly. The doctor came in and ordered a urine test and an iv of fluids and pain meds. I told him that I was unable to have the IV in my arm, that I have a porta-cath for a reason and that he was not going to stick me anywhere but with an access line to my port. He said no, the hospital is too dirty and I said OK and started to slide down off of the bed to leave. He asked me, “what are you doing”? My response was if your hospital is too dirty to stick my port then it is too dirty to put an iv line in my arm and I am going to go to a different hospital. He tried to tell me a stick in my arm is the same as a stick in my port. It is not! There are less small nerve fibers in my chest and chances of hurting me or bringing me out of remission are less. The chances of me getting an infection are about the same either way, but yes, if I was to get an infection in the port vs my arm it is more dangerous. But the chances are about the same either way. When he saw I was willing to leave, he decided to help me. He also had an issue with what meds to give me. As I do IV-Infusion Therapy with a Ketamine cocktail I don’t take opioids. They bind to the same receptor and would stop the K from working. Therefore, the doctor had to be creative. and it made him have to stop and pause for a minute. He ended up giving me Toradol (a NSAID) and Versed. It worked.

Then this past October, Case in point 2 happened. I had severe gallbladder pain. Went to the same hospital. The doctor ordered an IV line and morphine… I again went through this “our hospital is dirty” bit with him… (a different doctor) and the nurse. He got so mad his face turned red, he said he would be right back and asked the nurse to come with him. As they were leaving, I said, I am just gonna go to a different hospital then. I guess they didnt believe me. So, when they came back I was dressed in my clothes and ready to leave waiting for my ride. The doctor got all freaked out and said, “I didn’t refuse to treat you”. I told him I know, that I refuse what he is offering. He asked if he does what I want if I would stay. I said yes. I stayed long enough to get my port accessed, get an ultrasound and get some Toradol in me. When it came to needing surgery to have my gallbladder out, I decided to leave and wait until I had a team of doctors who were trained to help me with my RSD issues in mind and I am glad I did.

Once a doctor sees you stand up for yourself they are more likely to stand with you. If you dont know better, then rely on their expertise, but when you do, as you live a specific condition… do what is right for you. I knew the hospital was not to dirty to access me, that they were just being lazy and didn’t realize how much of an educated patient was sitting before them. I didn’t let them push me into backing down and I am better off for it in the long run. Yes, if I had to leave it would of sucked… but it would of been totally worth it to get the care I knew I needed and not just accept whatever limited knowledge care they were wanting to offer.

This past month I went with a family member to the same hospital. He got the same nurse as me. When the nurse saw me, I believe he was more attentive and helpful with my family member because he knew I would not take anything less and that we would not be afraid to call him on anything we knew better on. It is ok to say NO to a treatment option provided if you are not on board with it to give yourself time to get better care elsewhere, or ask more questions, etc. Please take the time to be your own best advocate now so that you will be here in the future a stronger healthier person.

2012 was a great year for me as a health advocate. I was featured nationally in Women’s Day Magazine, My first for Women Magazine, USA Today’s Chronic Pain Supplemental this past September, Dr. Drew’s Life Changers show, and the Newlywed Game Show. I was also given the honor of being the recipient of the Neuropathy Action Foundation’s 2012 “You Are Our Hero” Award, and participated through the Power of Pain Foundation as a volunteer in 73 events throughout the country in the past 12 months. One of my most fun events this year was the POPF’s Nervember campaign, where each day of November I got to send out a task for people to complete to help raise awareness and better personally advocacy for chronic pain patients. Most of all I am grateful for the friendships and connections I have made with thousands of patients throughout the world via social media, videos, phone calls and emails. Knowing I was able to give back to others in meaningful ways has been a great blessing!

Research has shown that when you smile, your brain assumes you must be happy1.

A good way to start the day, prepare for a doctors visit, or a social event (especially if you tend towards depression) is to make it a habit to practice everyday for a few minutes, eventually, it will become more natural and more of a reflex action to help release stress.

Practice the following simple meditation (might help to close your eyes) for a few minutes each day:

• While inhaling, smile
• While exhaling, relax deeply

You can do different smiles: a subtle hint of a smile, exaggerated smile, big and soulful, eyes crinkling, mouth open or closed, or just mentally imagine smiling.

You can practice this exercise for longer periods if desired, but if you find yourself not consistently doing the exercise because you can’t spare five minutes, go back to a one-minute meditation. The cumulative value of doing this exercise over a long period of time is more important than how long you spend each morning.

1 Strack, F., Martin, L.L. and Stepper, S. (1988) Inhibiting and facilitating conditions of the human smile: A nonobstrusive test of the facial feedback hypothesis. J. Pers. Soc. Psychol. 54: 768-777

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.