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.
