My Life Works Today! is a network ‘hub’ coordinating information from local health resources, foundations, organizations, wellness practitioners and social service programs. By utilizing a team approach, this project assists individuals in finding the services and support they seek to live well with their lupus on their own terms. We are the connecting point that gathers the information of what support options are locally available and explores what are still needed through research and outreach efforts conducted here in our Pacific Northwest. We focus on introducing individuals with the variety, strength, inspirational opportunities and amazing people to be found within our communities so that they have support that encompasses their entire lives – not just their illness.
Through this project, we currently offer individually-created wellness management and community-focused educational opportunities, geared primarily towards automimmune illnesses like Lupus but encompassing other types of chronic diseases. MLWT features three service components:
Lupus advocacy, outreach and action research opportunities
The key to building a supportive network is in understanding those community members we seek to serve. Although we target lupus, we recognize that living with illness creates many common experiences and our program is open to anyone facing chronic health challenges. MLWT takes steps in creating a solid service foundation by:
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offering educational seminars for businesses, educational and social service organizations, local health practitioners and community groups;
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through resource referral services offered in collaboration with private industry, community-based organizations and statewide services
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by partnering with other health organizations, groups and foundations, supporting their efforts in serving our lupus community
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creating opportunities for community action research, focus groups, and product collaborations by partnering with local businesses.
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P.O.R.T (Patients Offering “Real” Time): A patient-focused referral program linking individuals who share similar experiences, health challenges and personal goals. (This service is not meant to replace medically-based treatment or advice)
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Individualized support consultation (beginning June 2010) uniquely designed as a check in for those who are not interested in on-going coaching, counseling or support groups. These consultations reflect each individual’s choice of topic, support needs and frequency.
Educational Workshops
Target Practice Crews
These get-togethers offer immediate private peer network for exploring, establishing and accounting for reaching target goals. The P.O.R.T. program forms these crew gatherings, matching up individuals based on their targets, locations, degree of lupus involvement, date of diagnosis and duration of their illness. These small gatherings, a maximum of five crew participants at a time, offer an immediate peer network, in addressing specific topics and offering resources for whatever is needed. Topics focus on enhancing living well with lupus, but are not necessarily all about lupus (a list of current “Targets” topics)
These get-togethers are currently offered in the Portland-Metro area (Expansion to Vancouver, Oregon Coast and Salem locations expected by June 2010)
First Year
Our “First Year” series of small discussion groups are for newly diagnosed patients and family members. These groups are comprised of individuals who have already completed the Living Well With Chronic Conditions Workshops currently offered statewide. For a complete listing of the participating providers, workshop locations, and schedules, visit our Resources page or go to www.oregon.gov .
These small groups of up to 8 participants further expand on living well with illness by introducing some recommendations, resources, and techniques specific to life with lupus and lupus-related illnesses such as Fibromyalgia, Sjogren’s, Raynaud’s Syndrome, Antiphospholipid Antibody Syndrome (APS), MCTD and others . The “First Year” series offer a private setting for those who may prefer a more personal approach to entering into the initial adjustment phase of living with lupus. These group discussions focus on daily living, planning and organization, support networks and communication, and opportunities to gain specific questions from the participants themselves to be addressed by participating resource providers.
In the Community
We list a variety of MLWT community events that offer opportunities to introduce local resources available to anyone living with chronic illness. They include such topics as listed on the Target Practice Workshops page, local chapter discussion panels, advocacy events, action research opportunities and community dialogue regarding service needs, and so forth. The locations will vary, most are free and open to the general public.
Web-based Networking
Understanding how our health challenges and long Oregon winters can cause anyone to want to stay home, our project seeks to address both the physical and emotional needs we have at a degree to which we are able to at any given time.
Utilizing current social networking resources such as Twitter, Facebook, Ning communities and networks (we have listed the ones we participate in on our “MLWT Networks” column found next to each blog post you read.) Through these resources, we offer opportunities to:
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join in on monthly book group discussions
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participate in local social events or plan gatherings/meets
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connect with other MLWT community members through chats, tweets, or bulletin boards
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share information and resources with others throughout the U.S. (and the world) that can be helpful to us here in the PNW
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connect with other locals to find exercise buddies and outdoor fitness groups in your area, ‘sport’ of choice and individual level of participation
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Discussion Guides, Tools, Worksheets and other materials are also available to those who are registered for or have previously participated in MLWT workshops here on our website .
MLWT also offers local spotlights of individuals, organizations, service providers and businesses that are contributing to all Oregonians, living with or without lupus. Our Resources Page offers local, state, regional and nationwide resource links that can offer more information, products and services. We are always looking for recommendations from you that we can pass along to others.
Program Fees
For referral services, seminar requests and partnering opportunities, please contact Maria for more information regarding MLWT collaboration and service at maria@mylifeworkstoday.com
For community workshops and classes – All information about these opportunities will be made available through community flyers, community calendars and through the MLWT website. Costs will vary depending on topics, materials and location. Pay-as-you can options will always be available. Feel free to call or email us with your questions, requests and contact information (we respect your privacy and will not sell to anyone) to webmaster@mylifeworkstoday.com.
Free community presentations, events and forums – These are informational sessions with specific topics based on frequent requests from patients received within our collaborative network. Schedules, descriptions and registration materials will be available at a variety of locations including hospitals, libraries, support groups, chapter branches of local chronic illness organizations and here online at out blog. We will also be found at health events throughout the state and in the Vancouver area.
For marketing opportunities – If you are interested in placing your wellness-specific service on our blog or be listed as a resource for our region-wide community, contact us at maria@mylifeworkstoday.com. We reserve the right to decline any submissions we believe not to be in the best interest of our community.
