While reading the CreakyJoints Patient Guidelines for Rheumatoid Arthritis, I found a lot of useful information that will help me stay on top of my own illness. Since everyone’s experience with RA is different, I thought I would share some of my own thoughts and how it would impact my life.
Be prepared for your doctors appointments
The first section of the RA patient guidelines is the Patient Charter. I always try to be prepared for every doctor’s appointment I have and often write down concerns or questions regarding my health or any medication I am on. I also make sure everyone I see is on the same page, so I am constantly bringing new paperwork from other appointments. I’ll sign record releases so all of my doctors are aware of any other treatments or new medications. This is important so there is no miscommunication or mistakes during my ongoing treatments.
I started being proactive for myself when my husband was in the military and we were moving around so much. I was constantly having to start over with new doctors and new pain management programs. I’ve learned not to depend on a doctor’s office faxing over information and records regarding your past visits. If you get a jump start on that process, you’ll get treated faster and you’ll bypass any treatments you’ve already tried or tests you’ve already done. This is especially important if you rely on an insurance that only covers a percentage of your tests. No one wants to have to have 3 MRIs in the same 6 months if it isn’t necessary!
Be your own advocate
I also have had my current and past doctors write letters for me regarding what they are/were treating me for, how my medications were prescribed, and the length of time I am/was being treated by them. This helps with any errors in records or medicine lists that you have. I currently am in a situation where someone wrote down the wrong dosage of a medicine I take, which has caused a domino effect with all the other medications I’m on. I have an appointment with my mental health provider who will write down the exact medicine I’m on and the dosage, so this error can be fixed and all will be right again so to speak. You have to speak up for yourself. This is your body, your life and your illness. Mistakes are made. If available, you should always sign up for a patient portal and check it regularly to make sure everything is correct.
I speak very honestly with my doctors and usually have something written down to cover all bases while I’m there. I used to find myself on the way home saying “I wish I would have said something about this or that”. You’ll feel more fulfilled and you’ll get the most out of your appointment, if everything that’s bothering you is addressed. I also make sure I have copies of everything and keep it in a black binder. My binder dates back to 2010 when I first was diagnosed. With so many people suffering out there it’s easy to get “lost in the sauce” so to speak when you’re in any program or under any doctor’s care, so I even keep my disability paperwork in my binder. Taking charge of your healthcare will benefit you in the long run. It will help you feel less overwhelmed, less frustrated, and you’ll get the most out of every doctor you see.
I also learned to sign up online so I will get emails when there are clinical trials for RA or new medication. Unfortunately, you may not always get that information from your doctor or you may get it too late to sign up. Having the information sent directly to you, ensures that you’ll be able to sign up and possibly find something new that works for your body.
Be a part of a community
Communication and education are key when you have a chronic illness. CreakyJoints is a wonderful tool for those who want to discuss their disease with others. Taking part in #CreakyChats online is helping in meeting others, learning about how others fight their disease, and also expressing your own views and experiences. It has been amazing for me, especially when I lived on the West Coast and knew nobody offline. Joining CreakyJoints was the best thing I’ve done. I always have lots of information and reading material regarding RA, which helps me to manage my illness.
The CreakyJoints Patient Guidelines for Rheumatoid Arthritis is a wonderful document to help you maneuver your way through this journey of having an autoimmune disease. CreakyJoints mapped out a lot of useful information. Everyone’s experience is different- you will find something in the guidelines that fits wherever you are in your rheumatoid arthritis journey.