My Life Works Today! has been invited to design a curriculum using an internationally-recognized communications system to use for managing chronic illness. We are looking for a few participants to help evaluate our pilot program designed to strengthen and focus communication about living with illness to others. This will be a part of a local health research study.
For many of us – patients, parents, spouses/significant others, siblings, employers, medical providers (yes, even them)- it is sometimes difficult to fully express ‘what is going on’ from our perspective. Since we cannot truly live with or work with an illness completely independent from others, we need to find and use a variety of communication tools that work for a variety of situations. This program is one of those tools and the beauty of it is in how you can use it yourself and/or along with a facilitator.
If you, or someone you know, is living with illness, (specifically lupus or lupus-related conditions/diseases/syndromes) and has about 1-1.5 hours to offer their insight, critique and suggestions in the developmental process, please contact us here on our blog, direct message me through Twitter at @mlwt_lupus, or email me directly at maria@mylifeworkstoday.com.
The only specific requirements include:
- a diagnosis of lupus and/or lupus-related illnesses such as:
SLE – all forms
Fibromyalgia (often associated with lupus patients)
Antiphospholipid Antibody Syndrome (APS) and forms of vasculitis
Connective tissue diseases such as rheumatoid arthritis (R.A.), polymyositis-dermatomyositis (PM-DM), systemic sclerosis or scleroderma, Sjogren’s
- or a direct and personal involvement with someone living with illness
- live around the Portland Metro area north I-5 to Vancouver, WA (or at least can meet there) and south on I-5 to Salem (again, or can meet there).
This is a voluntary program and not designed to cause any discomfort. You will have the option to withdraw from the pilot at any time. The process and results will be based only on the information you are interested in contributing, however the more you put into the process, the more all participants will gain from it. The information shared for the pilot program will be kept strictly confidential and not shared with anyone outside the session.
Thanks for any help you can offer in getting this pilot up and running. Feel free to contact me if you have any concerns or questions about participating. We appreciate your interest in finding new and innovative ways to live well and this pilot will give you an additional opportunity to define life with lupus in your own terms~
