Invisible Not Broken - Chronic Illness Podcast Network

Clorinda leads the charity, Good Days, which is a national non-profit that primarily provides financial assistance to patients so that they do not have to choose between access to medicine they need and affording everyday living.

Clorinda has had more than 20 years of experience in the healthcare industry and over 12 years in strategic philanthropy. She is also a chronic illness warrior herself with ulcerative colitis, enteropathic arthritis, and more recently endometriosis and migraines.

➡️ visit www.mygooddays.org

http://chronicdiseaseday.org/

Summary of Part 1

• Validation and support
• POOP
• Her amazing story (close to a stroke  enlightened)
• Moving past the pain and preparing for the unknown
• Taking baby steps

** Full show notes can always be found at www.InvisibleNotBroken.com/humancare-podcast **

MORE FROM CLORINDA

What is your diagnosis(es)?

I have ulcerative colitis, entero-pathic arthritis, endometriosis and migraines.

What’s your business/initiative?

I work for a nonprofit that provides resources for life-saving and life-extending treatments to people in need of access to care

What conditions/audiences do you cater to primarily?

Chronic and Life altering Disease

Could you give us a brief snapshot of what your daily life is like? What is your “normal”?

I have had to adjust over the years since my initial struggle with Ulcerative Colitis. I am happy to say that most days now I manage well. I no longer have to take a plethora of medications and any discomfort that I have is manageable.

How has your illness shaped your career? How has it changed you overall?

I have been in the healthcare industry all of my life. Prior to becoming ill, I believed I understood what people with a chronic illness went through and needed. Boy, was I wrong! I believe the disease helped me to be a better advocate for people. Helped me to understand that when someone you love has a life altering disease it not only affects them but everyone around them. It taught me to trust, that is okay to ask for help. It taught me to listen. Most of all it had a huge impact on the responsibility I have for helping others.

What’s your latest project/post/feature that you are most excited about?

Each year on July 10 Good Days spearheads Chronic Disease Day in America. Chronic diseases account for 7 of the top 10 deaths in America. So we make the date 7/10 Chronic Disease Day (July 10th!)

We share resources and awareness because if we work together to eliminate key risk behaviors and make healthy choices, we can reduce the number of preventable chronic disease and live longer, healthier lives.

This is also a day where we bring all patient groups together to address issue that impact the entire chronic disease community, such as discrimination for insurance or ensuring basic patient rights.

Everyone can get involved. You can email us to find out if your hometown and state recognize Chronic Disease Day. If they don’t currently recognize it, we’ll issue a request on your behalf.

Visit ChronicDiseaseDay.org to learn more. 

What are you most passionate about in regard to your work/helping people?

No one wants to get sick.

The one thing I have found is everyone wants to have more time. More time to create experiences and lasting memories. More time to love and be loved. 

I believe we all have a collective responsibility to help people any way we can. I want people to know they are not alone. I want to create a connection that comes from heart. I am passionate about providing hope and more good days to anyone I touch.  

How do/did you handle flares while working?

Flares were difficult to manage as the manifestations were continually different. I went weeks where my fingers and toes were curled in and I could not straighten them. I would drive with my wrists. Other times where I had to map every bathroom to and from work. 

I found the most difficult part in managing my disease was my mental state. The whole thing made me feel like I may go crazy. I couldn’t see the end and I felt like any control I had over my life had been taken away. Asking for help was very difficult for me to do. 

I finally set a timeline/goal to stop feeling sorry for myself, get some help and start focusing on the good. Once my mental state was changed, my whole outlook on life changed.

What was your journey like finding the right care? Did you find good practitioners? (Diagnosis, treatment, management, etc.) 

I may be one of the lucky ones as it only took about two years to get the appropriate diagnosis and treatment. I didn’t realize organizational skills come in really handy when you are sick! (mine were lacking). On different legs of my illness I had to take up to 30 pills of some sort, injections, infusions. I am happy to say I am on a good wellness path!

What does “trust” mean to you in the patient-practitioner relationship?

I found that trust goes two ways. It is not a matter of taking everything at face value and moving on. I learned that is okay to ask questions. To be your own advocate. I also had to take accountability for my care and be a diligent patient. Make my appointments, document my illness, discuss concerns and follow my treatment plan. And also to be okay if something is not working and trying something else. The same diagnosis does not mean the same care. Listen to what your body is telling you and discuss it with your provider. A road map to autoimmune diseases does not exist. They affect people differently. Document your path and find the practitioner that will listen, answer questions and work on creating your personal road map and treatment plan.

Any life hacks?

1.    Always keep an extra pair of clothes with you! You never know when an overnight trip may last a week.

2.    Keep enough medication with you to get you through 5 days.

3.    Breath…this too will pass.

What does a “healthy” world look like to you?

Understanding and inclusion: A society that helps others when they can and focuses on building people up and not breaking them down. 

Also one where we are all educated on what we can do to eat well and stay active (mentally and physically). I found that when I ate well and stayed active it made it easier to manage life. 

What frightens you?

My biggest fear is that any of my three sons develop an autoimmune disease. My sister has an undiagnosed connective tissue disorder, brother psoriasis and psoriatic arthritis, Grandmother type 1 diabetes, and other siblings with autoimmune diseases. It is not a path I wish for anyone.

If you had one message to send out to every chronic illness warrior out there, what would it be?

Your daily outlook has an effect on how you feel. Highlight the good, laugh often (even if it is at yourself) and walk when/if you can. None of us are promised tomorrow. 

Forgive often (including yourself), love hard (including yourself) and be a fierce friend, mother, father, sister, brother……

How has Good Days responded during the coronavirus pandemic? What are you seeing and hearing from the people you work with?

The public health crisis in our country is unprecedented and the people we serve who have underlying health conditions are particularly at-risk.

Centers for Disease Control and Prevention did a study that showed that among U.S. patients requiring admission to an intensive-care unit due to COVID-19, 78% had at least one underlying condition.

Now more than ever, it is essential that Americans can afford the healthcare that they need. Good Days remains committed to reducing patients' financial stress, so that they can focus on their health and well-being during this difficult time.

Just this week launched COVID-19 emergency relief funds to cover the costs of medical and essential non-medical expenses for eligible individuals who have chronic or life-altering diseases and have contracted COVID-19, or are experiencing economic hardship due to the pandemic.

Where can the audience find you in terms of social media, website, etc.?

www.mygooddays.org

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