Toolkit for Patients
Patient Toolkit
As you work your way through this cruel mystery, the Lupus Foundation of America, Greater Ohio Chapter is here to help you navigate lupus education, resources, and support. Together we can be successful at making the lupus journey manageable.
Aurinia | Get Uncomfortable
Learn more about Aurinia’s Get Uncomfortable Program
Be Fierce. Take Control.
Have you been experiencing symptoms that you can’t quite explain, that make you feel not like yourself? It’s okay to say that something isn’t right. Find out what it could mean
To learn more about this program
Take Charge
Take Charge is a weekly education email series for people with lupus, including those recently diagnosed. Each week for 12 weeks, you’ll get an email from our Health Educators with tips and resources that can empower you to take charge of your health.
Statewide Resources
Ohio Department of Jobs and Family Services
Unemployment
Medicaid
Family Assistance (Food, Cash, Medical)
Childcare
Opportunities for Ohioans with Disabilities
OOD Services
United Way 2-1-1 Help Link is available 24/7 to help those with questions about support services and programs. You can also call directly by dialing 211.
Cell Phone Assistance Learn how to get low-income assistance with wireless plans through the Lifeline Program.
Relink Resources needs.relink.org aims to digitally connect the disconnected, empower those desiring help, and restore lives by giving those struggling the help they need, when and where they need it.
Disaster Assistance for Businesses and Nonprofit Organizations The U.S. Small Business Administration’s (SBA) provides low-interest loans up to $2 million in order to help businesses overcome the temporary loss of revenue during the state of emergency. Explore Coronavirus Relief Options.
Resources by County
Click on your county for local resources.
Types of Doctors Who Treat Lupus
Since lupus can cause damage to many different parts of the body, you may see other types of doctors too, such as a
- Rheumatologsit (Most Common to Treat Lupus Patients) – specializes in diagnosing and treating diseases of the joints and muscles
- Dermatologist – specializes in diseases of the skin such as cutaneous lupus
- Cardiologist – specializes in diseases of the heart
- Nephrologist – specializes in diseases of the kidney
- Neurologist – specializes in diseases of the brain and nervous system
- Gastroenterologist – specializes in diseases of the gastrointestinal tract
- Pulmonologist – specializes in diseases of the lungs
- Perinatologist – a specialized obstetrician/gynecologist who focuses on complicated and high-risk pregnancies
Other Provider Resources
Finding the right healthcare professional is crucial to getting care that matches your medical needs. When seeking doctors to treat lupus, search for someone who treats many lupus patients, is proactive, and will listen to you.
GreaterOhio Physician Directory July 29 2024
Companion Therapies
Ask your doctor before doing any companion therapies. These are not intended as substitutes for your medically advised care plan. As with any treatment, stay educated and get information from trusted sources.
Although we encourage using mainstream medicine for lupus treatment, you may also be looking for a variety of therapies. Companion therapies include exercise, supplements, and homeopathic treatments.
Acupuncture
Acupuncture at Cleveland Clinic
Essential Oils
Essential Oils for Autoimmune Disease
Exercise
Exercise as an Anti-inflammatory
Fitt App – Fitness classes, events, and articles about your city
Hydrotherapy/Float Sessions
Marijuana
How to get a Medical Marijuana Card in Ohio
Ohio Medical Marijuana Dispensary Map
Ohio Medical Marijuana Laws & Regulations
States where Marijuana is Legal
Hemp-CBD Oil: Potential Health Benefits
Meditation & Yoga
Yoga, meditation, massage, and mindfulness can be used to combat stress, which can put a strain on your immune system.
Calm App – Sleep, meditation, & relaxation
Headspace App – Meditation, sleep, & mindfulness
Yoga Studios in Cleveland, Cincinnati, and Columbus
Reiki
Medication Toolkit
Managing & understanding medicine, financial resources, medicine databases, and pill management products.
Clinical Trials
The Lupus Foundation of America works with partners to provide ways to participate in clinical trials near you. There are several ways to find clinical trials, including a quick search function provided by Antidote.
Donate Medical Supplies and Equipment
Ohio’s Hospice has developed a list of organizations and information about donations they will accept.
Ohio Financial Assistance
Programs and resources for the State of Ohio
Strive to Be a Good Patient
It’s important to take the lead in your journey, while also following your doctor-advised medical treatment. Being compliant with your prescribed medication is very important to your health. If you don’t understand something that your doctor is talking about, ask them to clarify or simplify what they mean.
Make the Most of Your Doctor’s Appointment
You often get less than an hour to recap months, so make sure you don’t miss anything. Take notes during your doctor’s appointments, as well as throughout your journey so you can have a detailed account of how you’re doing. When your doctor asks how you’re doing, it can be so easy to just say “I’m fine” and downplay everything you’ve been going through. However, showing your doctor the full story will help them make a care plan that fits your needs.
Stay Educated
Get up-to-date and trustworthy information about your treatments and their effects, news in the world of lupus, and overlapping diseases. Reliable knowledge is power, especially when it comes to your health. The LFA, GOC is your local source that can provide you with educational programming. Reach out to the office to learn more!
National Financial Assistance
The Lupus Foundation of America, Greater Ohio Chapter understands the financial burden that lupus can visit upon families. Please see the links provided below to help locate important financial resources.
The New You
Be Powerful
You are more than your illness, but lupus can change your life drastically. So much of living with lupus is managing the disease itself, but you also have to navigate changes in your relationships and lifestyle.
Mental Health
Living with a chronic illness can take a toll on you physically, as well as mentally. Whether you’ve struggled with mental health before your lupus diagnosis, or if it’s become difficult post-diagnosis, it’s important to address it.
Find a Chronic Illness Therapist
Relationships
Your current relationships with people may change, but you may also find new relationships on this path.
Building a Lupus Community
Social Media – Social media pages and groups can help you connect with people who get it, even when you’re unable to go out and meet people. Follow LFA, GOC for updates and to connect with an online lupus community: FacebookInstagramTwitter