As defined by the American Medical Association (AMA) in 2021, PASC/Long Covid refers to those who are experiencing at least one persistent symptom up to six months after the initial infection has cleared. Symptoms include neurologic, cognitive, cardiopulmonary, constitutional, musculoskeletal, psychiatric and mobility impairments.
Worldwide, 49% of COVID-19 survivors reported persistent symptoms 4 months after diagnosis, estimates a meta-analysis of 31 studies published in The Journal of Infectious Diseases. University of Michigan researchers, who conducted a systematic review on Jul 5, 2021, also found the prevalence of long COVID at 1 month at 37%, while it was 25% at 2 months and 32% at 3 months.
This post has been designed for those who are affected by Long Covid.
If this is your first time visiting Healing Whole Blog, I’ve been blogging since 2009. Every Wednesday is “take a break,” day and offers a variety of simple art activities, games and other ways to relax and reduce the stress that often accompanies dealing with chronic or serious health issues. There are now almost 450 activities archived at Take a Break Pinterest. Many of these posts include multiple projects, so you can try something new every day of the year for several years.
Saturday’s post relate to issues that are common to those dealing with chronic conditions, with the third Saturday of the month being a Journal Watch. Lots of topics are covered, so use the search feature to find answers to some of your questions and concerns.
By way of introducing “how to get what you need,” keep in mind that you are more than a diagnosis. Fear, shame, vulnerability and powerlessness can be common emotions. It is easy to define yourself by what you can no longer do and how you appear. You might even feel that you have been robbed of everything that makes life worth living. Yet great things can be achieved by connecting with your inner self, identity, soul, spirit or whatever form you choose to call the core of who you are versus what you appear to be. Well-being is achievable by being positive; engaged in life; and having a sense of purpose and strong connections with others. While a “cure” is the direction you are moving towards, it is investing in the process that will help you heal. Check out the Well Being post to read more on this topic.
What you Might Need and How to Get it: Check List
The following checklist has been developed to help identify resources that might be helpful. It also provides a way to track what you are doing for yourself or those you are caring for. As you go through the checklist, you may find that you qualify for a service, but aren’t sure how to find them in your community.
Post COVID Care Centers [PCCC]: PCCCS have or are opening across the country - bringing together multidisciplinary teams from across a broad range of specialties - to address the issues of COVID-19 recovery - with comprehensive and coordinated treatment pathways. Check the Survivor Corps map to see what is close to you. Many of these centers will require a referral from your medical provider and proof that you’ve had Covid.
To assist you in finding resources in your community, you can contact:
• Information and referral service helpline for your state: Find the helpline for your state
• The Independent Living Center for your State Call 713-520-0232
• Eldercare Locator: Connects older Americans and their caregivers with sources of information on senior services. 1-800-677-1116 weekdays, 9:00 am-8:00 pm
• State and Local Health Department Call 202-371-9090
Support Network: If you haven’t joined a support group, consider doing so on-line or in person. Finding friends and places that can support you emotionally, and where it is safe to talk about your health issues can make all the difference. Googling your state, city or town name with Covid may turn up a support group. Many hospitals and clinics that have started PASC clinics are offering support groups. Facebook has become a good way for people to connect.
- Covid-19 Support Group (Private for those with onset prior to April 1, 2020
- Long Haul COVID Fighters - Round 2 (Onset of illness AFTER 04/01/20)
- Long Haul COVID Fighters - Medical & Scientific Collaboration
- Young Covid Survivors (Under 35)
Legal: Planning ahead is important for both you and your family’s future. You will need to have:
• a will;
• living will (advanced directives);
• durable power of attorney (makes financial & legal decisions for you if you are unable to do so);
• durable power of health attorney (makes health care decisions for you if you are unable to do so);
• legal guardian (who would care for your child or other dependent adult if you were unable to do so).
It is best that you work with a lawyer in completing the necessary paper work. All states have Legal Aid offices, which can assist you. Check your phone book for Legal Aid office closest to you.
Case manager for medical issues. A case manager is someone who can help you monitor your care. You can learn more about medical case management from your doctor or clinic or the social work department where you receive your medical care.
Case manager for social needs. A case manager can help you with such issues as housing, transportation, finances and completing forms. Places which offer this type of case management include:
• Community Action Agencies: Call your state information referral network-211- for the Agency closes
• Independent Living Center
• Area Agency on Aging (sometimes called Council on Aging)
• The social work department at the hospital or clinic where you receive your care.
• Visiting Nurses Association
• Your place of worship
Note: Your case manager for social and medical needs can be the same person. If you are already enrolled in an Area Agency on Aging, or have Medicaid, you have a case manager.
Personal Health Notebook: It is important to keep a health notebook about the care you are receiving as it helps to monitor trends, allows you to share information with other providers, helps to reduce errors at medical appointments, when your chart may not be available, and can be a resource in making important health decisions. There are a variety of free on-line e-health tools you can use. Johns Hopkins offers a free printable notebook. Your smart phone will have a preloaded health app (it appears as a red heart). It’s a good idea to fill this out and consider installing the free app My Medical
Share your data: This can shorten the path to new
treatments. Patients Like Me, is world’s largest personalized health network
and has published more than 100 research studies, has started a new page for
people with Covid. Another option is Patient-Led
Research Collaborative.
Use an Advocate to help you navigate the medical system and to support you.
Organize Help: Lotsa Helping Hands is a free private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis, caregiver exhaustion, or when caring for an elderly parent. If you are going to be needing help for any length of time, this is an excellent way to organize help and support. It’s the right answer to the common question, “What Can I do to help?”
Shared/Informed Decision Making: While decision making is part of life,
at the moment, some of the decisions just feel over whelming because they can
impact more than just you. Use the Decision Tools for the Time of Covid to help
make choices and decisions for yourself and family.
Health Insurance Forms and Policies Help: Within your state’s Health Department, contact Division of Elderly and Adult Services; Office of Health Care Ombudsman; or Medicare Help. To find your state and local health department, check your local phone book, or go to www.astho.org or call 202-371-9090
Paying for Healthcare: If you are having difficulties paying for your health care contact your state or local health department. Most states have a number of programs to assist those who cannot afford health insurance, including Medicaid with special programs for children and low cost health insurance.
• If you are a veteran, there are a variety of programs to assist you. Call 1-877-222-VETS (8387)
• If you are disabled and/or 65 or older, you qualify for Medicare
•
Many states have free clinics. To find out what is available in your community,
check your phone directory or check the following website.
Paying for Medications: Drug companies offer a number of different programs to assist patients in obtaining necessary medication. Most states offer prescription programs for persons with low-income and Medicare has a special prescription program. Depending on where you received your care, many places will have samples and/or certificates for reduced costs for medications. Resources to consider:
- Good RX
- Tricare Senior Pharmacy For uniformed services beneficiaries 65 years of age or older.
Non Medical needs: There are many indirect costs of living with a chronic condition, such as transportation, housing, childcare, home maker services etc. There are a wide array of community services that can be of help to you, and depending where you live, there may now be a service agency offering specific support for those affected by COVID.
Places to consider:
• The Community Action Agency closest to
you. Check your local phone book for listing or go to
http://www.communityactionpartnership.com and look under Community Action
Network
• Area Agencies on Aging, if you are 65 or older, provide case management and a variety of other services: Contact elder care hotline for you state, use Eldercare Navigator to find your state’s hotline
• Social services department of the hospital or clinic where you are receiving your care
• State Independent Living Center 713-520-0232 or www.ilru.org
• Civic organizations, such as Rotary, Lions club
• Many area schools and colleges offer student power to assist with yard work and home chores
Be aware that even if you qualify for a particular service,
because of funding issues, the service may still not be available. It is
important to develop a good support network to assist you. The Importance of Social Capital forthose Affected by Chronic Conditions
Disability Benefits: There are a variety of programs which you may be eligible for. They will involve filling out forms. Case managers, social workers and organizations like Area Agency on Aging or Community Action Agencies may be able to help you with this activity. Use the Officeof Disability Employment Policy Covid Information to help you find resources.
The Office for Civil Rights of the Department of Health and Human Services and the Civil Rights Division of the Department of Justice have joined together to provide Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557.
Life settlements/viaticals/Reverse Mortgage If you have a life insurance policy, you can consider these options. Be cautious about such activities and check with a financial advisor before doing so.
- Life Settlements allows policy owners to cash out of unwanted, unaffordable or obsolete life insurance policies insuring a senior over age 65.
- Viatical Settlements enable someone facing a terminal illness to utilize the present day value of their life insurance policy to ease the financial burdens that can be caused by the high costs of medical care.
- Reverse Mortgage, which is a loan against your home that you do not have to pay back for as long as you live there. For more information go to http://www.aarp.org/money/credit-loans-debt/reverse_mortgages/
End of Life Care
• Hospice Care is usually provided at home with the help of a visiting nurse and is usually time limited, six months or less. Talk to your care provider for a referral.
• Palliative Care provides focused care to improve overall quality of life. This approach offers relief from pain and other symptoms, such as fatigue, nausea, loss of appetite, shortness of breath, and/or anxiety. It is not time limited and can be provided at any stage of the illness. Usually such care is provided by a team. Ask about services at the treating hospital or talk to your care provider.
• Funeral Consumers Alliance: Non-profit organization, dedicated to protecting a consumer’s right to chose a meaningful, dignified affordable funeral. Check www.funerals.org for state program.
Work related: Consider the following:
• If you are no longer able to work, consider filing for disability.
• If you would like to return to work, but are afraid of losing benefits, contact your state’s Benefit’s to Work Program through your state’s independent living center or vocational rehabilitation program for assistance.
• If you would like to return to work, but are no longer able to do your old job, and/or you’ve never worked but would like to do so, contact your state’s vocational rehabilitation (VR) program. VR can help you find a job, keep a job as well as be train you for a new career.
COVID Related Resources
• C19 Recovery Awareness: Provides support for those whose health has been affected by COVID-19, promote public awareness and education regarding lengthy COVID recovery, and advocate for the medical, mental health, and social interests of long haul COVID survivors.
• BodyPolitic: Destigmatize issues facing the COVID-19 community and people with related chronic illnesses and disabilities by offering alternative narratives that get to the root of what it's like to live with a novel or chronic illness.
• Reddit /r/COVID
-19 Positive
• Resources for People with Long Covid
• COVID-19 and “Alternative” Treatments: What You Need To Know
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