Living With Chronic Conditions: What to Do Now that Trump is Elected

The American public elected Hillary Clinton but the electoral college elected Donald Trump. The latter stands and so we must prepare today for the road ahead.

While many Americans are in difficult situations and felt that this was one way they can show their contempt for Congress, the fact is the President elect has shown himself to be discriminatory against women, minorities and has little regard for those with disabilities. Further his goal is to undo the Affordable Care Act (ACA), that for the first time made healthcare accessible to many Americans, makes those living with chronic and/or life threatening conditions and/or disabilities potentially very vulnerable over the next four years.

However, before launching into “what you can do,” we need to be clear that it will take an act of Congress to repeal the ACA, as well as enact some of the other campaign promises he made. Of particular importance to anyone with a lung condition, breathing problems or heart disease, Trump has vowed to erase clean energy regulations set forth under Obama. Whether he will be successful in achieving his campaign promises remains to be seen. In the interim, his mere presence creates an unsettled feeling for many, so the best approach is to prepare for the worse and hope for the best.

What you can do:

1. Join the local chapter of the condition specific organization you are affected by (e.g. American Lung Association) and become actively involved. 

2. Be an activist. Lobby congress, state and local governments for health care that is affordable for all. Keep on top of legislation in areas other than health care that could adversely impact you, e.g. removing pollution standards. Many health related organizations and health departments monitor state and national pending legislation so subscribe to their newsletters and check their blogs. Get involved in what ever level you can-your life could depend on it. 

3. Take charge of your health and Well-Being: The following posts can help:

• Healing the Whole Person: Ways to Increase Well-Being When Living with a Chronic Condition

• Become an E Patient  

• Share Your Health Data 

 4. Boost your social capital: Resources that you now count on from local organizations-be it rides, homemaker services etc.-may no longer be available. Your social networks have value and importance so cultivate them. Being an active participant in your community, family, work and other networks, provides an opportunity to give to those in need and in turn, have community you can reach out to for help. Check out 150 Things You Can Do to Build Social Capital. One way to organize the people who make up your networks, so that they can help you, is a Lotsa Helping Hands website. To learn more about social capital, check out Social Capital Primer 

5. Reduce your carbon footprint: Studies show that climate change and pollution adversely impact peoples’ health, particularly those with conditions like asthma, heart disease, COPD. Changing eating, drinking and energy consumption patterns to be more sustainable can make a difference. For more on this topic: 12 Ways to Live More Sustainably 

 

5. Support Organizations (locally whenever possible). Not everyone can make a financial contribution, but can help by volunteering and engaging in other forms of community activism. Check out Donating for the “cure”: Do Your Homework/ Other Ways to Contribute Organizations to consider:

• Free Clinics and Dental Services: More people are going to need to rely on them for care. If you are not familiar with the clinic in your area, try a Google search, State Listing http://www.freeclinics.com of Free clinics or call 2.1.1

• Area hospitals and community health centers

• Community Action Agencies

• Community Based Organizations: These are local non profits that work to meet the needs of a given community and can include churches, schools, civic groups (Rotary, Elks), day care etc.

• Jezebel’s list of Pro Groups-women, immigrant, earth- and Anti Bigotry Organizations Includes groups like Planned Parenthood, Rape, Abuse & Incest National Network, GLBT groups etc.

• Organizations outlined in How to Channel Your Post Election Anger, Sadness and Fear Into Action. 

• Top 12 Environmental Organizations Who Use Donations Well

Related posts

• Living within your means: Un stuff yourself 

• Ways to Save Money on Monthlies (Bills) 

• Health Costs:When you have some money but not enough

Take a Break: Try Guided Visualization or Meditation

The holidays are approaching with hopefully lots of fun and joyful surprises. Even at the best of times though, it can be a bit daunting, so now’s a good time to try some different guided visualization/meditations practices, so when you need those extra moments to recharge, you’re all set.

As the psychologist Dr. Ellen Langer explains, “Guided visualization helps puts you in the place you want to be, rather than letting your mind go to the internal dialogue that is stressful.”  The persons voice matters a lot. Some people can set the tone for me, while others it doesn’t work. I happen to like the voice of Andrew Johnson and have found this two visualization exercises to be quite helpful:

• Moment of Relaxation with Andrew Johnson 

• Power Nap with Andrew Johnson 

 You might find something you like at 7 Best YouTube Guided Meditation or UCLA’s Mindful Awareness Center’s Free Guided Meditations. However, the best way is to do a Google search and see what appeals to you.

Not interested in today’s activity, go to the Take a Break Pinterest Board. and pick out something else.

Donating for the “cure”: Do Your Homework/ Other Ways to Contribute

In the last several weeks, local papers have covered a story about how funds raised for innovative cancer research and crucial patient supportive services via The Prouty have been used instead to meet operational expenses at regional Cancer Center . The “whistle blower,” the head of the cancer center, was relieved of his job as a result and he is now suing the hospital.

 The fact is non profits don’t always put their money where their mission is. In 2015, the Federal Trade Commission and law enforcement partners from every state and the District of Columbia charged four cancer charities with defrauding consumers of more than $187 million. Instead of helping cancer patients, the heads of the Cancer Fund of America, Cancer Support Services, Children’s Cancer Fund of America, and the Breast Cancer Society allegedly funneled donations into luxury cruises, college tuition for family members and friends, gym memberships, sporting event and concert tickets, and even dating website memberships.

With the holidays just around the corner, charities are actively seeking funding and many households respond. So before you make a donation or participate in a fundraising event-

Consider the following:

• Check out websites like CharityWatch; Wise Giving Alliance;  CharityNavigator;  and Charity Check. Give Well provides a more indepth analysis as they check on what the charity’s impact has been. Note-This is not necessarily as straightforward as it sounds. I tried to check on the Jimmy Fund, a registered non profit, as a number of people locally participate in the Boston Marathon on their behalf. Couldn’t fine them listed on any of these sites. Turns out they are under Dana Farber. Some smaller programs may not make it on to one of these lists, but could still be doing good work, so ask questions, check websites, talk to people who may have more knowledge of an organization than you.

• Whether the solicitation comes via email, letter or phone, it might not be easy to tell whether it's legitimate. The Federal Trade Commission says these signs should make you suspicious:

* The “charity” can’t provide details about how donations are used.

* The caller can’t provide proof—like a Federal tax ID number—that it’s a qualified charity and that your donation is tax-deductible.

* You're pushed to donate immediately.

* You’re asked to wire a donation.

* You're thanked for a pledge you never made to convince you that you already agreed to donate.

Unless it’s a charity you already subscribe to, do not respond to electronic solicitations as there is a good chance it’s a scam.  Read the Federal Trade Commission’s Consumer Information pamphlet “Before Giving to a Charity” for lots of helpful tips and suggestions including how to report a Charity Scam. 

• Educate yourself about “pink washing,” which is the name given to heavy solicitation of funds for breast cancer, but in fact applies to many other conditions, such as the red ribbon for AIDS. The Facadeof Breast Cancer Awareness, Susan G. Komen and the Pink Ribbon.  is an interesting read. Just because a product is pink-or another color associated with a disease-doesn’t mean that your purchasing the product is actually going to help fund research or help those affected. 

• Unless it’s a local charity, check carefully before doing walks, runs, bike-a-thons etc. Generally these events have high administrative overhead, for every dollar you give or raise, a considerable chunk will go towards administrative costs. The bigger the organization sponsoring the walk, the more decisions about use of funds are made at corporate and may not have a desired impact locally. However, these events give a wonderful opportunity for people affected by a condition to gather, share stories and support one another. As one advocate wrote, Walk if you want to – it’s good for your health. If you want to be sure your walking truly benefits people who are ill, walk to the nearest organization doing work you admire on the issue and lend a hand. You can even hand them a check if you’re so inspired.

Ways to Help Other Than Giving Money

• ShareYour Health Data 

• Take part in research studies. Check out ClinicalTrials.gov

• Donate Tissue: This is particularly helpful in finding ways to prevent, diagnosis and treat cancer. Tissue includes materials from your body such as skin, hair, nails, blood and urine. For more information Providing Your Tissue forResearch: What You Need To Know 

• Donate blood and plasma. Can’t be a donor, offer to drive someone who can donate, be a volunteer at a blood drive, or organize one.

• Become an organ donor. Learn more about becoming an organ donor at Organdonor.gov 

• Provide support by making a meal, driving someone to a medical appointment, being a peer, being a friend

• Check Employer Giving Policy: If you work for a company, particularly a larger one, check with human resources to see if they regularly donate and if they’d be interested in donating to your charity. Many companies like to support causes that are important to their employees.

• Volunteer: Condition specific organizations have many jobs that need to be done. Make a call or stop by to see what you can do.

• Make something you can donate-such as a pie or cookies for a bake sale. Many organizations look for things like blankets, caps and clothing for people that have various medical conditions such as Chemocaps. If you are artistic or have a special skill, donate it as part of organization raffles, silent auctions etc.

• Play a Game-This is basically citizen science. Check out 6 Online Games That Help Researchers Find Cures 

• Become politically active by following legislation, national and local, and taking an active part in the passage of bills that can help.

• Use a charity credit card where rewards go to your favorite charity.

• Shop online using AmazonSmile  that donates. 0.5% of your purchase to your favorite charity. Good Shop is another option. 

• Share your story. You never know who it will inspire

Related Posts

• Ways to Fulfill the Obligation of the Cured/Healed

• How To Fundraise When Someone is in Need of Specialized Care 

Take a Break: Create a Cozy Retreat

\We’ve already had two snowfalls in Vermont and it’s barely November. Time to think cozy thoughts for the winter ahead.

As a kid, in the fall and spring my mother would change the rugs, curtains and bed linens, which made the house feel cozier in the winter and light and airy in the summer. It was a lovely tradition and I’ve been thinking about some of her ideas as I write this post.

The winds can blow and the rain, snow and sleet can pelt the windows but you’ll be snug and comfy by implementing some of these ideas.

• Dig out throw pillows and blankets, give them a wash if need be, and scatter on furniture including the bed. There is something nice about reading on top of the bed covers in the middle of the day while snuggled under a warm throw. If your budget permits, check out places like TJ Maxx and Ikea for some new items to liven your space. If you are crafty, recover an old pillow with a favorite sweater that’s seen better days.

• Rugs add an extra layer of warmth and texture. Having a nice warm rug to step on as you get out of bed can set the tone for the day.

•  Scatter floor pillows and cushions on the floor, particularly if you have a fireplace-not too close though and definitely not so many that it’s hard to get around.

• Pull furniture away from drafty windows. That noted, having views to the outside, particularly if you have a bird feeder or like watching the snow fall, is important. Create conversation nooks as winter is a great time for visiting with friends and socializing.

• Curtains can help block drafts and add a nice accent to your room. Look for ones with insulated lining for the most warmth.

• Using table and floor lamps makes the house so much cozier. Switch out cool toned bulbs for compact fluorescent light bulbs marked "warm" or "soft.” Use a dimmer for overhead lighting. Small Christmas tree lights, which are already in stores, can add a bit of sparkle in the right space.

• Candles create a lovely intimate atmosphere. Use unscented flameless ones to reduce fire risk as well as indoor pollution. If you are going to use real candles, beeswax and soy are your best bet. Fragrances can be a real problem for people, particularly if they have asthma or other breathing disorders, so look for fragrance free.

• Fireplaces belong in every home, but alas that’s not the case. Create a “faux” one. 

• Keep your comfy “indoor” shoes (slippers) by the door, or if you live in Vermont, in the mudroom. First thing you do when you enter the house is switch out of your boots and “outdoor” shoes (leaving behind dirt, melting snow, salt, mud etc.) for the relaxing comfort of slip ons. Aaaahhhhh.

• Pick a favorite chair or sofa that is your special relaxation zone-your place of Zen. It has to have an ottoman or someway to put your feet up. A cuddly blanket, soft lighting (candles are fine), favorite books, crossword puzzles, sketch pad or other items that you can enjoy doing need to be handy. There also needs to be a place to put a cup of something warm.

• Include pops of red in a few places such as kitchen towels, flowers, candles, throw pillows etc.

• Surround yourself with things that you love-pictures of friends and family; favorite treasurers that make you smile when you look at them.

• Check out Take a Danish Hygge Break 

Not interested in today’s activity, go to the Take a Break Pinterest Board. and pick out something else.