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A CHRONIC ILLNESS WON’T STOP THIS FAMILY FROM HAVING A MERRY CHRISTMAS.

Despite their Living Situation, Sara’s Family is just Happy to be Together During the Holidays!

After Katherine found out that her 12-year old daughter Sara’s illness required that she receive a kidney transplant, her family suddenly also needed lodging assistance within 30 minutes of her medical team in case a transplant becomes available. Through our Travel Assistance program, Good Days assists their family with lodging assistance near Sara’s hospital. Despite the hardships they face this year, their family remains positive and is ready for the holidays no matter what.

Our family is huge into the holidays and normally we are that house on the block with all the stuff in the yard and all the lights and the whole craziness. But this year is a little different because we don’t have a yard to decorate and we can’t leave town. 

Good Days has enabled us to be together. We have a space to pile in and still be together for the holidays and have that sense of family while being 10 minutes from the hospital just in case that kidney arrives. So our family will be coming here and I think that the important thing to remember is that we need to be grateful for every minute. 

It doesn’t matter if you are cooking a turkey in a tiny little oven. It doesn’t matter. We have so much to be grateful for this year. It’s brought about a new sense of gratitude in our family that we can be together for the holidays even if it’s not at our home. We can all pile in here and just be a family and celebrate. We are just doing it different this year. Sara says we are getting a white Christmas tree, because every year we have a green Christmas tree, so we’re going to toss things upside down this year and we’re just making the most out of all of it. 

We go to the same dialysis clinic four days a week and you see some really, really sick people there. It’s been an incredibly inspired journey to meet them and hear their stories. For the most part they are grateful everyday they can get out of bed. And if they can do that so can we. We also have an amazing transplant team here, world class, taking care of Sara. We have so much to be thankful for. 

FROM OUR STAFF 

(This September, the Good Days team participated in the Cancer Support Community One Run)

What are you most thankful for this year?

“Where do I start?  I am so, so blessed and fortunate.  My family, my daughters, my life friends, my health, my faith, the people I work and stand alongside each day…. there is so much to be thankful for. Life is such a gift, but short overall, so I have learned as I have grown older to appreciate each day and be thankful for each experience, life lesson and opportunity presented to me.”  
-Randie, Chief Operations Officer, Good Days team member for 1 year

“I am most thankful for my new home as an opportunity to be hospitable to others, for my health to be able to serve God, and for my family and friends, who are the best in the world!”
-Dawn, Finance Manager, Good Days team member for 5 years

“I’m most thankful for friends, family and co-workers who support, encourage and push me to grow. Gratitude is the seed to enjoying life- and I want to enjoy it to the fullest!”
-Lauren, Operations Manager, Good Days team member for 8 months

“Being surrounded by so many of my friends and family.”
-Taylor, Administrative Coordinator, Good Days team member for 3 years

“The chance to have a positive impact and make a difference for others.”
-Rebecca, Operations Supervisor, Good Days team member for 5 years

“There are so many things to be thankful for this year so it’s very hard for me to pinpoint just one thing. If I had to choose, it would be my husband. I got to marry the most wonderful and caring man this year and I don’t know where I would be without his love and support.”
-Serena, Good Days team member for 11 months 

How has being a Good Days team member made an impact on your life?

“My pastor has a short prayer that I’ve made my own: Thank you Lord for the blessings of this day.  It’s a reminder that whatever is happening, life is a blessing. Working here is a reminder that not only is my life blessed, but I get to help be a blessing to others.”
-Roger, IT/Infrastructure Lead, Good Days team member for 9 years

“At least once a month, I hear about someone being diagnosed with a chronic illness. I don’t even think about it, I start pulling up all the resources I’ve learned about as a part of our team. Knowing I can help them feel hopeful about a diagnosis that moments before felt insurmountable, brings just a little more light into my heart.”
-Kim, Patient Care Specialist, Good Days team member for 9 years

“I help the people who talk to our patients so that they have a safe and happy working environment and the resources they need to take that next call.”
-Tricia, Director of HR, Good Days team member for 2 years

“I live every day to the fullest and I try to be kind to everyone I meet. I proudly represent Good Days because it has made me a better person and I am grateful to be here for 10 years.”
-Linda, Patient Care Specialist, Good Days team member for 10 years

“Working at Good Days has given me a better understanding of those who struggle with chronic pain. It has made me appreciate the good health I currently enjoy. It has given me compassion and empathy for those who suffer from illnesses around me.”
-Sabrina, Operations Supervisor, Good Days team member for 9 years

“It’s definitely a feel good job. When I leave I know I’ve helped someone, and it always feels good to help others in their time of need.”
-Tina, Patient Care Specialist, Good Days team member for 1 year

PARTNER SPOTLIGHT

ROLF BENIRSCHKE

When it comes to chronic illness or sports, nothing is more inspirational than a great comeback—and one of the greatest chronic illness comeback stories in professional sports is that of Rolf Benirschke. 

Shortly into his second NFL season as the placekicker for the San Diego Chargers, Benirschke became very ill and was diagnosed with Inflammatory Bowel Disease (IBD). He would require several major abdominal surgeries that left him wearing two ostomy bags and his future very much in doubt. Remarkably, he recovered and made a dramatic return, receiving numerous awards such as NFL Man of the Year, Comeback Player of the Year, NFL Players Association Hero of the Year, and earning a spot in the Pro Bowl. In 1997 he was the twentieth player inducted into the San Diego Chargers Hall of Fame and, in 2004, was inducted into the Academic All-America Hall of Fame.

These days Benirschke serves as a spokesperson for the Crohn’s and Colitis Foundation of America, founder of the Grateful Patient Project and co-CEO of Legacy Health Strategies. Good Days spoke with Benirschke on his insights for others who suffer from chronic illness.

GD: Why did you choose to become a patient advocate?

RB: Advocating for patients was not a conscious choice until after returning to the NFL in 1980. There was a lot of publicity surrounding my comeback and it prompted patients to write me letters asking how I was able to live and play with an ostomy. I quickly learned that there are over 100,000 ostomy surgeries performed every year and that each was life-changing for that patient and their families…and…nobody was talking about it. I decided to do something about that and created a program for patients living with IBD, colorectal cancer, or an ostomy, to share their stories and bring awareness to the situation. I realized that with the visibility of my position in the NFL, I had a unique opportunity to comfort and inspire others.

GD: What advice would you offer patients who may be struggling to access certain treatment for their illness?

RB: First, I would encourage you to “own” your disease, to take it head on and to be your own advocate, and then look for other foundations or associations supporting your disease. Second, as new therapies are being approved, know that not everybody is instantly aware of them, including insurance companies and health plans. What we’re finding is that there is often an automatic denial of coverage for certain treatments even though there is clear clinical evidence of their effectiveness. What we have learned, however, is that if you push back and ask for a peer to peer review, cite relevant studies, show that the procedure or medication will in the end be less expensive than other traditional treatments, in many cases your medication or surgery will eventually be approved. So, don’t take an initial denial of coverage lying down—fight for the treatment that you believe will help!

Article excerpted from original, search online for “Good Days HuffPost” to read in its entirety.   

A LETTER FROM OUR EXECUTIVE DIRECTOR

CLORINDA WALLEY

Greetings from all of us at Good Days! We hope you had an enjoyable Thanksgiving and look forward to the holidays ahead. 

With the passing of every holiday season here at Good Days, we are filled with gratitude for our opportunity to support others. For every individual we assist with access to care, we help an entire family or community of loved ones. Every person we serve means more than words can describe to Good Days.  I speak not only for myself, but for the entire charity when I say that we truly feel blessed to know that our work makes a difference for those who suffer from life-altering, rare and chronic disease. 

We are also thankful for the support of our partners across disease categories who have worked with us this past year to promote awareness, provide access to care resources, and support the voice of the patient. 

Our goal every day is to support patients’ needs to the best of our ability. We’re glad to announce that we will unveil a newly designed website in 2018 entirely with the people we support in mind. Whether you are a patient or a caregiver, we are grateful and honored to serve you. 

The brand new www.mygooddays.org features all the essential information found before, but is now easier to navigate and more accurately reflects the spirit of our organization. Learn about the disease states and medications we support, travel assistance resources, enrollment and re-enrollment deadlines, login to the patient portal, or find news about patient resources and inspiring stories on our blogs, all on our new site.
 
We appreciate that for many individuals and families, the holiday season can also be a difficult and stressful time. Living with chronic disease forces you to re-evaluate your lifestyle choices, holidays included. December and January can bring extra planning, dietary restrictions and all-around stress that can negatively affect health. Don’t be discouraged if you need to simplify your holiday traditions where possible and don’t be afraid to ask for help. Please know that you have our support. We wish you hope, courage and happiness this holiday season. 

Sincerely,

Clorinda Walley, Executive Director

Good Days