Ok my friends it is time that we have a talk :)
Luckily I am clear headed today because I believe that this is a very important topic. I know many of you have seen me post something like "the doctor works for you. You hired them and you can fire them if they are not listening to you". I firmly believe this is true. This does, however, require some work on our end. I know we are ill and I completely understand brain fog. I actually understand even more then brain fog because I have neurological issues that have affected my memory, motor skills and cognitive functioning. I say this not to make anyone feel sorry for me but just so you all understand that I do know we have obstacles to overcome when it comes to taking charge of our health. We must take charge though!
I have not only copies of every lab that has ever been done but also all records from every doctor, every ER visit, hospital visit, and imaging center (report and images both). I take these papers with me to EVERY doctors appointment. I give new doctor offices my copies so they can make one for themselves and they give e back mine. One day (on a good brain day) I went through the records and I made a 1 page print out of all "out of range" blood tests that I have had and the date they were taken. I give that to each new doctor along with a 1 page summary of my illness. I know the doctor is not going to go through and read every page of the records he is sent but I want him/her to know who he is talking to. How long I have been sick. What doctors diagnosed what. What doctors believed what but couldn't get the blood work to come out. When each symptom began. The high (or low) points of my disease. I refuse to be a number to these people. Am I a pain? Maybe so but when I picked up my first set of documents from the doctors and began reading them I became furious because 10% of the information in these records was wrong. Yes, you heard me... wrong. They hurried so fast through the visits they didn't even have correct info in my charts. This is when I decided that I had to do something and take some kind of control when I could. As you know some days I go to the doctor and my memory is shot and my brain isn't working but since I have the bases covered with the summary and the lab results sheet I don't have to worry that I will forget something important. I am also insured that the doctor cannot shew me away with some lame excuse because he failed to do his job. One day I had a doctor try to dismiss me by saying that I would have to come back another day because he had to get the images from my last MRI. Was he shocked when I said "oh, I have them with me. Do you want to take a look at them now?".
I know we were all raised to believe that the Doctor's are in charge and they are always right but what this place taught me is that I had to "unlearn" that. I am in charge of my own well being. They were trained and I hire them but I am still in charge. Call all your doctors and tell them you are going to want to pick up copies of your records. Some of mine charged me a fee and some did not. It was worth the $25 dollars though. Once you get copies of EVERYTHING take them with you every where you go. Also keep a list of all your meds in your purse/billfold. I promise if you do these things when you're having a better day you will be very thankful when you need the information on a not good day
Sorry for the long post. Didn't mean to ramble so much!
Very well said and, I am sure that you know, I agree with you 110%. I ALWAYS advise that we MUST take charge of our health and that we do not allow any doctor to dismiss us for any reason. The reason being exactly as you stated..you have the information with you when the doctor tries to dismiss you, so his plan to not do his job is thwarted. Also, because you can ensure that the information is correct in order to overcome lazy health care workers.
We have to be in charge of our health and our health care because, too often, we are told that we are lazy and/or crazy because they do not want to take the time to find the true answers.
I commend you and I think that you are a great role model for us to make sure that we make this a priority in our efforts to manage this disease. Kudos for you!!
Peace and Blessings
It is I that should thank you! When I first came here I was so lost and had no clue how to handle being sick. It is all of you that, through one post or another, showed me what I needed to know. Without all of you I would not have come as far as I have. I will be eternally thankful to each of you and to this forum
Originally Posted by tgal
Well said answer and reply mate but do you know if what you've said apply's to the UK, my GP gives me copies if i want one but when i ask at the hospital it's a no and they fob you off mate because if this does apply to the UK the Raynauds doctor wants to get ready for some questioning come january, please let me know mate as i would appreciate it.
Glad to hear you feel abit more with it today. xxx