Ten Commandments of Sickle Cell Disease
- Accept your Disease. Don’t ignore it. Respect it; don’t fear it. Learn how to master it and not let it master you.
- Take good care of yourself. There is only one you! Practice healthy eating habits. Drink plenty of low sugar/salt fluids. Get adequate sunlight exposure and rest. Get some aerobic exercise. Take care of your mind, body and soul.
- Pace yourself. If you overdo it, you will experience pain. Once you master your tolerance levels, you will do much better.
- Remember, you can do everything you want to do. Always be safe and not sorry.
- Learn to control your pain. Don’t let your pain control you.
- Develop and focus on some things that bring you joy and satisfaction. Set goals, and strive to achieve them.
- Establish social, emotional, economic and medical independence. Take charge of your disease. You own your sickle cell disease. Your family and doctors can help you, but it is not their disease; it’s yours. Own it!
- Establish an effective social support network within and outside of your family. Seek supportive relationships with people who accept you as you are and all that comes with you.
- Don’t waste your pain medication. Don’t always reach for the medicine cabinet. Treatments other than pills can reduce pain. Learn how to tailor the use of pain medication to the degree of pain you have. Over-treatment leads to increased pain and reduced effectiveness of the medication and may also reduce your quality of life.
- Pain is a pain, but it does not necessarily mean something terrible is happening. All pain is not related to sickle cell disease; it could have other causes.
Advance Directives
If you become unable to express your wishes, how will you have a say in your medical care? The answer is Advance Directives - simple legal documents that let you appoint a health care decision-maker and specify your basic health care choices. The sickle cell clinic social worker can help you complete the necessary documents at no cost to you.
Advocacy
If you need assistance with basic needs (housing, utilities, and/or benefits) or have a disability and need support and advocacy, please contact Community Advocates or Independence First for assistance.
Behavioral Health
For many people, chronic illness and depression go hand in hand. You are not alone. Community agencies are available to connect you to the appropriate resource.
Benefits
If you have questions about your disability, Foodshare or Medicaid benefits, you can contact Social Security or Milwaukee Enrollment Service directly to talk to a representative or open an online account through the websites below.
Disability Resources
Social Security has useful resources for people experiencing disabilities. Go to the Social Security website to apply online for benefits, planners, publications and much more.
The Disability Resource Center of Milwaukee County provides Information and Assistance regarding services for Adults with Disabilities ages 18-59. DRC staff members assist individuals to plan for long-term and short-term needs, access community services and resources, and learn about benefits that may be available.
Employment
The Wisconsin Department of Workforce Development (DWD) is a state agency charged with building and strengthening Wisconsin's workforce. DWD’s primary responsibilities involve providing job services, training and employment assistance to people looking for work, while working with employers on finding the necessary workers to fill current job openings.
Energy Assistance
Learn how to apply for energy assistance to help with utility costs.
Family Violence
No one should be a victim of domestic violence. There are resources out there geared toward promoting safety and providing a way out of violence for victims and abusers.
Food, Clothing, Shelter
If you find yourself in need of food, clothing, and shelter the below resources may be of assistance to you.
Housing
The below resources may be able to assist you with finding high quality, affordable, housing.
Insurance Websites
Accessing affordable health insurance is important to promoting good health.
- Medicaid Children’s Community Health Plan: childrenscommunityhealthplan.org/our-plans/medicaid
- Medicaid United Health Care: uhccommunityplan.com/wi
- ICARE: icarehealthplan.org
- Medicare: medicare.gov
- Medicaid: dhs.wisconsin.gov/medicaid
Legal Resources
Legal assistance promotes justice. The below legal resources may be of assistance in promoting a decent quality of life for those in need of services.
Medications
For the uninsured or underinsured, medication costs
Parent Resources
Parenting resources are available to empower those in parenting roles, as a means to providing safe, nurturing homes for children.
Sickle Cell Disease Resources
Sickle cell disease (SCD) is a group of inherited red blood cell disorders. In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a "sickle." If you have SCD, it's important to learn how to stay as healthy as possible.
Substance Abuse
If you or someone you know are looking for substance abuse treatment help may be found at the below resources
- county.milwaukee.gov/CCS.htm
- county.milwaukee.gov/ImageLibrary/Groups/Everyone/SAIL_AODA/WiserChoiceBrochureUpdated.pdf
- cawisconsin.org/
- wisconsinna.org/
Transportation
The Milwaukee County Transit System offers many services to the community beyond public transportation. The Rider Insider club and the Transit Plus service are a couple of the transportation programs available. Below you can find more information about the country transit system.
