IMPROVING QUALITY OF LIFE : FINDING HELP TO ADDRESS YOUR CONDITION

Here are my suggestions to consider doing, to help find answers to move forward with whatever you are expected to cope with. I hope sharing some of my tactics might be helpful to find your answers:

• Listen to yourself and trust your gut and ignore the doubters and try to find your answer.
• Begin to keep a medical notebook of test results, appointments, strange symptoms and anything else related, that might help to put these pieces together for an answer.
• Don't be afraid to move on to new doctors if you are not comfortable with the ones you have encountered. Each one has their own personality and techniques, so look to build a medical team you feel comfortable with and that shares mutual respect.
• I know you want answers, but you are in the driver's seat. Don't be afraid to say no if something seems too radicle that they want you to try.
• If a description you hear from someone else sounds familiar to your life, be sure to search reputable sources for accurate information to learn more.
• Reach out to others and see if you hear of another experiencing something similar. You just never know what you might learn that they did, that helped to find the correct reason for their medical issues, that might be helpful to you.
• Be willing to try things that can't hurt you, but might help you. I have tried for instance, prolotherapy that wasn't always successful, yet has helped strengthen certain body parts from no longer dislocating. Being drug resistant to all opiates and even aspirin and Tylenol, a doctor suggested trying cannabis. I thought he was delusional,

yet listened to his suggestion and today, sleep well with a simple night oil from our home-grown plants. After twenty-seven corrective surgeries, I only take the night oil and no day medications, since for me, the cannabis oil has allowed continued calm to my body into the next day.

• I have allowed myself to be a guinea pig for EDS here in RI and for NIH research. I won't get cured, but having a goal of wanting to not have another person wait so long for a proper diagnosis, helps me feel purpose and meaning again.
• Find an outlet to cope with the frustration and feeling of loss in life. I started writing poetry at one point to release my emotions. This was strange for me to turn to, as I don't tend to pay attention to poetry. Yet I ended up writing over a hundred poems. I found writing helped me learn to cope with the new life I was expected to take on. Releasing my emotions in words helped me learn to accept and move forward.
• Continue to eat well, exercise, and try to live as active a life as you can, despite the limitations you are given at times.
• Reach out to friends or family that are compassionate and supportive, and that are comfortable allowing you to vent
• I have found it helpful to speak out and share what I have learned, in hopes that just one person's life will improve and not have the endless unknown journey I had to experience. I have educated the hospital ER staff and even new first year medical students at Brown University, to make them aware of this condition that so often is passed over as fibromyalgia.

going to now work towards my cure, I confronted the word: Incurable. Yet, now I knew this was real, I wasn't making these symptoms up and there was a need for a new battle to figure out how to improve the quality of my life.

It is rough enough to not feel yourself, but to also not be able to get help and guidance on how to address the condition and strive towards an improved quality of life is devastating. Many of us, in time, know in our hearts that things are off, but then get judged and dismissed to go home and are expected to ignore it.

Remember, this is the one life you get to live. After you allow yourself time to mourn your losses caused by your medical issues, you then need to get up, get to work and create your medical and social network to help you improve the quality of your life. You will find if you take some control in this process, it will help you learn to accept the changes to your life, and empower you to work towards ways to improve your life.

May life be kind to you •

ABOUT THE AUTHOR:

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!