I hope these suggestions will be of help for your planned hospital stay or for an unexpected visit. Being in the hospital is not an easy assignment, so the more you can prepare, helps the experience will go more smoothly.

ABOUT THE AUTHOR:

Ellen Lenox Smith

Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island and the country. She suffers from two rare conditions, Ehlers-Danlos Syndrome and sarcoidosis. She enjoyed a career, predominantly in the field of education, before having to resign due to health. She devotes much of her time to advocacy. Presently, she is a co-director for Cannabis Advocacy for the US Pain Foundation, along with being on their board, runs Rhode Island Patient Advocacy Coalition, and was appointed by the governor

to both the Adaptive Telephone Equipment Loan Program and the RI Medical Cannabis Oversight Committee representing patients, and helps run the RI EDS Support group. A proud mother of four sons and five grandchildren, Ellen is also an organic gardener, and prior to her disability, was a master swimmer and high school swim coach. She was a staff writer for National Pain Report and 1000 WATTS Magazine before they shut down, was a former staff writer for Pain News Network, and with her husband speaks out to educate others about her condition and pain management. She has spoken to: the FDA, Brown Medical students, Blue Cross nurses, and physical therapy students in RI and CT, along with speaking at the EDS national conferences. She is also the author of two books: It Hurts Like Hell!: I Live With Pain - And Have A Good Life Anyway and My Life as a Service Dog! 

PREPARATION IS KEY : PLANNING FOR AN EMERGENCY HOSPITAL STAY cont.

IF YOU ARE CONCERNED WITH BEING HANDLED

For me, people don't seem to understand the danger of handling an Ehlers-Danlos and Sarcoidosis patient inappropriately. Just a simple process of transferring me from the rescue chair to placing me onto their stretcher, actually caused permanent damage to the hip that became dislocated by their rough treatment. That happened despite my son and daughter-in-law advocating for me while I was unresponsive. So, either be sure to have an advocate with you and/or consider handing a list of concerns to the medical team.

IF YOU ARE CONCERNED WITH MEDICATIONS BEING GIVEN TO YOU

Despite having DNA drug sensitivity testing in hand showing medications that I cannot metabolize, I have confronted the situation of being given medications that are not compatible with my condition, and then paying the price with a physical reaction that exacerbates my symptoms. Again, be sure to hand the list that is safe and not safe to the staff, and tape it on the door of your room.

HOSPITAL CONVENIENCE AND COMFORT

Consider adding the following into a bag to grab “just in case”