Adapt, Overcome, Rinse, Repeat.
Not necessarily in that order.
Now that The Mighty Turtle has a renovated home, I would like to explain the goals and purpose of this website. Some of you remember it from back in the day as Scleroderma, Sarcoidosis and Box Wine. I still have the Facebook Page of the same name, but changed the blog name so it would be easier to remember. I picked “turtle” because turtles out lived the dinosaurs by adapting. They moved to the sea, learned that jellyfish are delicious, and know how to cruise The Gulf Stream like a champ on loose bed of kelp. The only thing anyone remembers from Scleroderma, Sarcoidosis and Box Wine is the “Box Wine” part. By the way, I stole the “Box Wine” idea after listening to hours of listening to The Stephanie Miller Show Podcast driving to and doctor’s appointments between LA, Riverside and home.
Overall it is a blog, but there are resources and a store as well as a useful resource about life as a member of the human race living with some chronic illnesses, being a parent and 100% service connected female veteran.
My diagnoses are Scleroderma, Sarcoidosis, Rheumatoid Arthritis, Depression and complicated damage like pulmonary fibrosis, barrat’s espohagus and Joe my God, the list ends here.
I write to raise awareness and hope to save others time by sharing about how I spun my own wheels. In addition to written posts, I have a video series called, Scleroderma on the Fly. This series consists of facts and helpful tips about scleroderma. Each video after Episode 1 will be two minutes or less and will cover only one topic. This is to provide a quick go to source thats easy to understand and easy to repeat. I want those who watch to walk away from each episode knowing the topic.
Feedback is always welcome. I especially need to know if there is something I talk about that does not translate or you as the reader or viewer need further explanation. I am my own editor. Of course I enjoy positive feedback, but critical feedback will only help me become a better messenger. If it’s the information I give is ever confusing, let me have it!
I support research and fundraising organizations I know about and find credible by sharing their information, donor pages and more. I am not connected to the organizations I endorse.
I write about current events as well as medical experience. There is more to life than our diagnoses. It took years of therapy for me to realize I was not my Scleroderma. I want to share that message. Though my opinions will be shared, the only thing we need to agree is that diseases like Scleroderma and Sarcoidosis need a cure and patients need better treatment while waiting for one. (I’m a little tire of waiting. Did someone just start playing Muzak?)
Thank you for taking the time to read about this website/blog. I hope you will find it a useful resource and share posts when you feel they are share-worthy. It doesn’t matter your diagnosis and this page is not just for patients. It is for patients and those who love and care about them. Coping is tough as both a patient and loved one. The greatest way to torture a person is to cause suffering to those they love the most. Not sure? Ask a parent. Diseases have symptoms in common. Coping is universal because we are in this together and we can help each other by learning from one another.