For starters, nothing is more frustrating than the ER triage nurse blankly staring at you through the glass in utter confusion. That ‘deer in the headlights’ look that is usually followed with, “I have no idea what any of these things are.” This alone is reason enough to carry your diagnostic forms with you. Long awkward, repetitive explanations can be cut short by sliding your folder directly to her with all your information. Depending on the situation, the nurse, or the relevance, the material you provided can be photocopied and added to your folder with ease, saving both parties a lot of time and energy (and frustration!). This process can also help expedite your ER visit by helping eliminate, treat, or identify new symptoms that you are currently experiencing by providing specific details. These include vital information about your diseases, types, subtypes, symptoms as well as emergency medical procedures and treatments, in the event that you were unable to communicate.
For this reason also, it is important that your friends and family are aware of your folder and that it is always on your person. In the event of an emergency, the person with you can aid in your rescue by being able to hand your info over to the paramedics, or the ER staff.
My last experience with a paramedic was really good. They wanted to learn about my chronic disease and took the time to look through my folder and ask me about it. They then took my folder to the triage nurse for me, to go through it and discuss the severity of my diseases. I am forever grateful to the paramedics that picked me up and took me to the hospital. They made me feel safe, secure and that my life was in good hands. This is especially important to me because I am used to people not believing me that I am sick.
Remember, when living with chronic diseases, it’s truly imperative that you are your own advocate. This means writing down everything you want to talk to your doctor about when you see him/her and pushing forward to get the medical care that you need. You must dictate clearly to a doctor what it is that you want out of your appointment. After all, you know your body best, and what you were feeling. Sometimes days before an appointment, I will start writing the things done I want to talk about; what I think is most important; why I want to go there; whether or not my test results are in; if I need prescriptions; blah blah… I understand that you are tired and exhausted, but I must reiterate that you advocate for yourself. Living with illness and being terminally ill is trying it and definitely not easy. However, if you can’t ask for the kind of care you want, then how will you receive it? Remember that you are great importance.
You can do this.
Don’t give up hope.
You are not alone.
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