To get my background as to what I've had to go through as a patient to finally get diagnosed with multiple chronic illnesses, please read my post: Connecting the Dots...
It can be miserable, stressful, time-consuming, overwhelming, humiliating, frustrating, patriarchal, condescending, out-of-touch, exhausting, misunderstood, misrepresented, not patient-oriented, not patient-driven, not patient-concerned, not patient-advocated, not respectful, and down-right jaw-dropping at times. I'm talking about the Medical Establishment--the system as a whole, doctors, sometimes nurses, insurance companies, pharmaceutical companies, the FDA, and on and on...
If you are a living, breathing person, you have experienced the medical establishment in some way, shape or form at some point in your life from the time you are born, taking your first breath, until that very last breath you take, which may very well be in a medical facility in both cases, and anytime in between! Being a part of the medical establishment as a patient is not always because of a negative situation or time in your life. The birth of a child is a wonderful time to cherish, and it is a great time to actually want to go to the hospital or birthing center! Of course, just because you are only expecting a new beautiful bouncing baby full of life and joy to hold and love, there are always risks when it comes to your health and that of all those involved. Be prepared when a procedure or anything is going to be done that is not in your total control. Well, when I put it that way, you should be ready for anything at anytime because we are never truly in control at all times! OMG! I can't believe I just admitted to that! LOL!
I'm going to start off by saying that when you go for a normal check-up or physical, bring a notebook or something that has your questions already written up on it, so that you know exactly where you are going to take your appointment. Otherwise, you will forget what you were going to ask, get sidetracked by the doctors plan for the visit, and go home completely discouraged that you didn't say or do what you really wanted! Here are some free pointers from me to you:
- Bring a notebook or paper with prepared questions already written up but with enough room to write down any new information that you may receive, or if you come up with any new questions while waiting for the doctor or as he answers the others so you don't forget to go back in your mind.
- Always bring a printed out list of all your meds, the frequency and amount you take, and when you take it. Also have written the doctors that prescribe them, your pharmacy phone number, and what you take the meds for. You really should know why you take your meds. If you don't know, that is a great question to put in your notebook for when you see that particular doctor next time! A printed list is also great to keep in your purse and car, and with you at all times. If there is an emergency, the emergency response team will have a list of your meds at the time they get to you to be able to give you the appropriate treatment at the soonest possible moment! Also, if you have it saved on a disk or desktop, etc., then you can go to it easily to revise it and update it and print out a few new ones to replace the old ones. I also use my list to bring to the pharmacist to mark the meds I need refilled. It makes it so easy, and they never forget to fill any, etc.
- Sometimes when we go to the doctor, we are told news that we don't always like to hear. We may be in denial over certain conditions that we find extremely hard to face like a terminal illness, or even an illness that we know we will live with for the rest of our lives that will be chronic and cause intense pain, probably won't kill us, but will cause a multitude of problems, dependence on others and disability. This is why in cases like this it is important to bring someone with you, someone who is close enough to you that they care, but not so close that they will also deny and not be able to actually "hear" what the doctor or nurse is telling you. Then, later, that person can go over it with you again and again to make sure you got everything that the doctor said, that may have just skimmed the top of your head and not actually made it into the brain or memory or a place of understanding or downloading of information.
- We all need a patient advocate, this kind of goes with number 3, but there is a little more. The patient advocate will keep pushing the doctor to learn more about the disease or condition or the results to a certain test. She or he will also make sure that you know all there is to know about your meds and the side effects and interactions, etc. You have to be your own advocate as well. Stand up for yourself! Patients have rights! We don't walk in, get lectured on how terribly we've taken care of our bodies, that now we have many illnesses, etc. and we are left to pick up the pieces alone. NO! Don't settle for crap like that! Believe it or not, there are doctors, and these are the ones you want to have as your doctors, that will be your advocate! They will fight for your rights, work hard to find the right meds to suit you, make you feel better, and want you to have the least amount of side effects to function so that you can live as healthy and "normal" life as possible.
- Go doctor shopping. If you don't mesh well with your doctor, look for another one. You don't have to have an awful doctor. A smart doctor doesn't have to be impersonal. There actually are doctors that will take the time to really listen to YOU! Doctors are stereotypically thought of as unfriendly, but smart because they are able to figure out what's wrong with us. They may not take the time to talk about what problems and new ailments or side effects you may be having, but they are supposed to be very smart, so you will continue to see them. You really don't have to do that. I have found that there are really great well-rounded smart doctors who will laugh with you, take time to listen, and they focus on you. They are usually the same doctors who are great patient advocates! The right doctors for you are out there, but you have to do the foot work. Think about when you go shopping for anything, ladies...shoes, purses, laptops, cell phones and even nail polish! We take our time, compare and contrast, maybe look on-line and in person, ask friends what they like, or what they bought. It works for you men too...any gadgets and tools and vehicles or lawnmowers, etc. You do the same thing, shop around and compare. If we do this with all these things down to what we paint on our toenails, why wouldn't we shop for the best doctor for ourselves. Truly, our health and even our lives depend on this...so shop for your doc!
- Get a second opinion. Even if you have all the faith in the world that your doctor is right and that the MRI, lab work, and general work-up makes perfect sense, I still say get a second opinion. You could be put on a very toxic medication or even surgery that you may not necessarily need. Also, what if the lab work was incorrect, or what if the MRI was showing something that wasn't really there? Nothing is 100% in this world so get that second opinion, and if you get a gut feeling that something isn't right, get a third, fourth, fifth, sixth, etc. opinion until your gut feels like the answer is what it truly is! Sometimes, it may seem that the entire medical establishment cannot seem to find what you want them to find, not that you want to be sick, but you ARE sick! You have been sick, and that is why you are going to all these doctors. If you feel sick, you are sick, and you should not stop looking for what is wrong until you find it. Don't let anyone say you have exhausted all options. You never can exhaust anything except maybe yourself! LOL!
- Make sure when you start on a new treatment plan, whether it be meds, PT, an exercise program, supplements or a new way of eating, learn everything you possibly can about that treatment plan. Go online, talk to others who have done the same treatment option, and check for local support groups or local organizations that have information about your disease and treatment options.
- Find like-bodied, like-minded folks. It is still good if you have an acute illness, a chronic illness, a terminal illness, or any type of disease, syndrome, or disability to be with people who understand what you are going through, and know what if feels like to be sick! I also think you should have a few "normal," "healthy" friends that keep you grounded--that is the term I would use because otherwise you could end up inside yourself and lost in the disease. With your normal friends, they may do things with you that your sick friends don't that keeps your mind off of the illness and on yourself. Like-bodied, like-minded individuals are great because they don't care when you have had three straight horrible months, and so now you are focused on "me, ME, ME!" They don't care if you want to have a pity party. They don't care when we sulk, when we cry, when we are on the couch in our PJ's all day. They don't say things like, "You don't work? I just met you, and I already hate you." Normal people say that because they don't understand that sometimes we can't work at no fault of our own, and work to us is missed a lot of time. Many of us go to school, college even, to specialize in our passion, only to have to give it up, often at a very early age. Some of us, myself included, loved working. So continue to have a support system made up of those who have similar issues to help you get through yours and vice versa. Also, have in you support system, those that are "normal" to distract you at times so that your life isn't all sickness and doctors!
I have the wonderful experience of being on both sides of the medical establishment. I am a registered nurse as well as a person with chronic illness. I went to school, studied my passion, worked for a short while as a nurse educator, mainly as a diabetes and asthma educator. I worked with children for a while, then with adults, and decided I liked the hospital out-patient setting with adults and children alike. The teaching approaches were different, but that was the biggest difference (aside from the obvious differences). Actually, adults have just as hard of a time sitting in a classroom setting and paying attention as children, and our patience can be just as easily tested by both.
Bottom line is, to be on the medical establishment side, there needs to be the consenses that the patient is in charge of his or her own health. No one makes them see the doctor, forces them to take their meds, or straps them down and does procedures without consent for the sake of the medical community! Since this is the real case here, we should be calling the shots! We should decide how long the doctor can see us, how much we can afford, what option we think is the best for us, with the medical establishment's help with our options to choose from. We shouldn't have anything hidden from us--side effects, research, test subjects' results, and other options that we may like better or that might be our best option for us. Sometimes the medical side gets wrapped up in what they want and forgets that we have rights, and wants and reasons why we wouldn't choose that option, but we would choose another. Not every option, treatment plan, etc. is right for every patient, and that is why it is all the more important that we are able to communicate with the medical side of this dance. The thing is that many, many times, actually most of the time, the medical side gets so lost in what they want to achieve that they always take the lead, and we, the patients, never get a turn at taking the lead!
So I feel, coming from both sides I can address both sides. I do not work anymore since I'm on disability. I loved being a nurse. I love people. I love to support others with chronic illness who need support to be able to fight for themselves in a system that doesn't really work for us. Knowledge is power. We are Warriors when we stay educated and stand up for ourselves and others like us. So learn all you can beforehand, be prepared, and be an advocate for yourself and others. I am a nurse still at heart, and I continue to keep up with my education hours so that my license is active. I am your advocate always! I am here for us all! We must support each other, so the medical establishment sees that we are an extremely strong force that will get our way eventually if it benefits us and others' health, well-being and our day-to-day lives!
STAY STRONG MY KNOWLEDGEABLE WARRIOR FRIENDS!!!