Be Prepared

Life with a chronic illness is hard. It is not always fun, but you learn to live with it and you learn from it. It teaches you so much. Some of the things I have learned, slowly and painfully in some cases, are about how to deal with medical professionals.

Be prepared. Growing up in an active Boy Scout family, I have heard this a million times or more, but never has it found a place in my life like it has since I got sick.

Before you go to the doctor, make a list of any questions, concerns, new symptoms, or ideas you want to mention for your doctor. I keep a running list in my phone for anytime I need to make a note for the doctor. Sometimes my list is really long and sometimes I end up dividing it up for my different specialists. Before I go to my appointments, especially my routine appointments, I go over my list and reorganize it in order of the most important to the least important items. Depending on what doctor I am going to I may print out my list and give them a copy to make sure they have everything. My list includes new symptoms, questions about new treatments for my symptoms, diet changes, and much more.

Be ready to advocate for yourself. Do not be afraid to question your doctors. Sadly sometimes you know more about your illness than they do and with some illnesses, like GP, the symptoms vary wildly from person to person. Advocating for yourself is a necessity. If you are ill enough that you cannot easily advocate for yourself take family or a close friend to your appointment to help. There have been times I have needed my husband to advocate for me, especially in Emergency Rooms and Urgent Care. Some doctor's will try to downplay your illness or treat you in a way that makes you feel stupid. Don't let them walk all over you. No one knows your body better than you do.  When I go to the ER I regularly have to explain to doctors and nurses what gastroparesis is and what I need them to do for me because they have no clue.

Do your research. When I first got diagnosed with gastroparesis my doctor knew very little about it. He gave me a one page front and back handout, with basically all the information he had. It included a very basic diet plan with no in depth information and a basic description of what GP is. It did not give me any real information. So, I took to google... and I learned a ton. I took some of my new knowledge to my doctor who did some reading as well and over time we found a plan to manage my symptoms.

Find people that have been there. I found some support groups for gastroparesis by searching FaceBook. Those groups got me through the hard days. They gave me support and encouragement. They also gave me ideas for things to talk to my doctor about.

So... if you get anything from this get this... Be prepared! It will take a lot of stress and pressure off of you when it comes time to go to the doctor.

For more information on gastroparesis and for gastroparesis support check out G-Pact here.