Trust

It's amazing to me how hard it is to find a doctor who is truly invested in your care and overall well-being. I've seen so many doctors-- I couldn't even give a number to the amount of doctors I've seen. When it comes to my care I am very involved. You'd think many would be involved in their care but most patients just go along with whatever the doctor says without really asking questions or voicing concerns. My approach to my care is that of trust, communication, and dialogue.

Trust to me goes both ways. I need the trust of my physician so that I can get the best possible care. If my physician doesn't trust me then there's limitation to understanding and believing what I share with them about my health. For instance, when I share what I believe is affecting my pain--if my doctor doesn't listen/trust me then no matter what I say the doctor will dismiss my concerns and not take into account my insight into my health. Then there's my trust in my doctor. Trusting in my doctor is the key for me in feeling comfortable. If I trust my doctor then I know that the doctor has my best interest at heart.

Having open communication with both my physicians and nurses means making sure that all the doctors and nurses involved are on the same page. During one of my hospitalizations I was put on a specific medication by one doctor in the morning but by afternoon another doctor decided to remove me from that medication. The next day the doctor who initially had me placed on that drug asked me what happened since he was unaware that a change had been made. I was left having to explain to him that another physician did not feel as though the medication I was placed on was helping me so I was taken off that drug. Not long after--I was placed back on that medication. I shouldn't have been put in that situation and I shouldn't have been compromised like I was. Sudden changes like that can have an adverse effect therefore pushing any progress I had back (which means increased pain).

As a result of this experience I've been very adamant with all my physicians involved about communication so that such a thing does not happen again. Now, before any changes are made I ask to make sure that all parties are not only aware of upcoming changes but are in agreement on the best plan of action for my health. Aside from it being important for the nurses and doctors to be on the same page I continuously advocate that I be made aware of any and all changes to my medications, treatment, tests etc. so that I can understand the reasoning behind such changes and so that I can voice concerns that may arise. When it comes to sickle cell anemia many in the health care system agree that we the patient know our bodies better than some physicians. The best doctors that I work with are the ones that don't pretend to have all the answers but are the ones that are humble enough to admit that I go through this all the time and I know my body better than they do. The doctors that ask what do you think, what dosage should I start with, what works best for you, are the best because its not about pretenses but about quality of care and pain management. In the same breathe the best patients are the ones that admit that they don't have all the answers and are willing to work with their physician. It is a collaborative effort treating sickle cell anemia and no one person has all the answers. That is why I play such an integral role in my care. From knowing why a certain blood test is taken to the dosage of a medication--I make sure that I am aware of what is entering and leaving my body. If I don't take my health seriously then who else will? If I don't fight to be heard then who endures all the pain? If the doctor makes all the decisions with no input from the patient then who lives with the ramifications? The answer to all of these questions and many more is, I do!

Whenever I'm placed on a new drug that is unknown to me I do research until I am completely comfortable & knowledgeable about that drug. This is my life. I take it very seriously. I want to encourage you to do the same and make sure that you are a part of your treatment & care. Upon being discharged from the hospital during one visit I was discharged on a new drug that I've never heard of and so I began my research. When the doctor came in to do their discharge summary I had a lot of questions pertaining to that drug & the physician shared how impressed she was with my diligence. It didn't even occur to me that that was what I was doing until she said that. So it got me thinking and it encouraged me to share with you all how important it is not to be a "yes" man when it comes to your health. Many people treat doctors like God-whatever they say goes. If you have a question, ask it. If you have some hesitations then voice it. If your physician doesn't want to work with you then maybe it's time to start looking for someone who'll want to hear those questions & concerns because they should want the best for you. You are your best advocate so Advocate!