A Short Updated Explanation of The Mighty Turtle

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.

The Mighty Turtle adapts to overcome.

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.

My Life Partner, Scleroderma

In 1992, I considered myself an average 22 year old. I was in the Navy at the time and  my fingers started feeling tingly and would go numb at the slightest drop in temperature. When I reported my symptoms to a doctor, they were dismissed as “female hysteria”.  Then, one “lucky” day I got food poisoning while at work. I rode out the symptoms for 8 hours.   Once my shift was over, I had finally stopped vomiting long enough to clean the bathroom and head to Sick Call. Sick Call is the Navy’s walk-in Urgent Care. Food poisoning in my division was no excuse for missing work. The only way I could get the next night off work would be by doctor’s orders.

The physician who saw me immediately recognized I needed the next night off and wrote me a note to bring to the officer in charge of my division. My doctor even expressed his frustration with my supervisor for not sending me to the ER. I was too exhausted to even reply with  more than a grunt when the look on my doctor’s face changed from irritation to bewilderment. The doctor asked me if I had blue paint on my hands.

I had become so accustomed to my fingers numbing and was so wiped out from food poisoning, I hadn’t even noticed it had happen while I sat and talked to the dcotor.
I told him “No, my fingers do that all the time. No one ever believes me when I tell them.  Thank you for noticing.”

He grabbed my chart, noted my symptoms and then frantically started looking through books on the book shelf over the desk of the cubicle we occupied. He appeared frustrated and couldn’t find what he was looking for. Eventually, he pulled out a slip and told me he was referring me to Balboa Hospital to see a Rheumatologist. I had no idea what a Rheumatologist was. In fact, I think it was the first time I had even heard the word Rheumatologist. I was just relieved someone recognized I was not crazy and I was looking forward to getting that note to my boss so I could go to bed.

After recovering with a good 48-hour nap, I woke up relieved. I realized that my days of being called “sick bay commando”, “hysterical female” and “slacker” were over. A doctor witnessed what I felt.   I had proven my symptoms were not my overactive imagination. I was looking forward to my appointment with this rheumatologist, but my relief of finally finding an answer was only temporary.

I didn’t see one Rheumatologist, but two at the same time. I thought, “Now I’m going to get some answers.” Blood work had been done and there I sat in an office with two men I thought were finally going to give me the answer I was so desperately seeking.

They might as well have told me the answer was 42. I was told my blood work came back negative and they had no diagnosis. I was told to cut out caffeine and smoking. After making those changes, my symptoms continued. When I returned to my follow up appointment three months later, my symptoms were still present. The same Rheumatologists concluded it could be my birth control pills, but since I had low blood pressure they were not sure. I still picture them tossing ideas to each other like watching a game of tennis as my head bobbed back and forth as if looking from one side of the net to another.   So, off I went to finish up my time in the Navy. I just dressed warm and tried not to complain.

During the last six months I was in the Navy, I took an EMT Class to find out if I would like being a nurse. I loved it. The nurses who taught the class would comment about my fingers and toes turning blue when we practiced assessment on each other. My capillary refill was never normal, but I had been seen by rheumatologists, twice and had no other symptoms. I felt there was really nothing to worry about. So, I made a plan to work as an EMT while attending nursing school. I was preparing to leave warm and beautiful San Diego for college in La Crosse, Wisconsin.

1995 Working my way through college as  DJ at a friend's wedding.

Before my first digital sympathectomy. My hands worked great!

As a native Californian who could count on one hand how many times she spent more than two weeks in a place with snow on the ground, Wisconsin was quite an eye opener. I arrived in April of 2004 to what I thought would be spring. It was.  I just had no idea  spring in Wisconsin is about 40 degrees. Unfortunately, my fingers and toes became worse and by October, I had my answer.

Again, I saw two Rheumatologists. I began to believe they traveled in pairs. I came to see them after  months of preliminary testing and blood work by a gaggle of doctors at the Madison Wisconsin VA Hospital. This pair of Rheumatologists took one look at my nail beds, looked at each other, looked up at me and in perfect unison said, “Scleroderma”.

It sounded like Greek to me and I was close, it was Latin for hard skin.

Then I had two questions, “Will this kill me?” And, “Should I drop out of nursing school?”

Both questions were answered with a solemn “We don’t know.”

I left the exam room with prescriptions for Plaquinel and Nifedipine.  I came for answers and left with even more questions for which I was given a few leaflets to find my answers.  I was in a daze, confused and left the office with a new life partner, Scleroderma.