Scleroderma on the Fly: Episode1

This is a post contains a link to my UTube Channel for my video series:

Scleroderma on the Fly: Episode 1. What is Scleroderma?

Scleroderma on the Fly.

Please click here to watch Episode 1 “What is Scleroderma?” 

 

I mention my secondary diagnosis of Sarcoidosis.

To clairify: having more than one autoimmune disease is not uncommon.  To submit questions for future episodes, please go to the contact section and submit questions, tweet them to me or post on Face Book.  Please subscribe to my UTube channel to be notified of new episodes.

Thank you for watching and sharing this video.  I hope you will find the information easy to understand and easy to talk about to others.  My goal with this series is to teach all interested to be able to talk about Scleroderma  without receiving glazed over blank stares.

Please give me feed back if I am unclear about any topic.  No question or topic is off limits.

 

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.

My Imagination Helps Me Get Things Done

Day 3 of #HAWMC If I had a super power, what would it be?

My super power is my imagination.  I could say my sense of humor, but I’m not always funny, just creative, so I will stick with my imagination.

As long as I can remember, I have used my imagination to get me through tough times and long before I had Scleroderma and Sarcoidosis.  No, I wasn’t bitten by a radioactive Mary Poppins spider, but I do have my suspicions about that polyester uniform I wore for my first job at Taco Bell in1985.   Now THAT would be a great Halloween costume, but I digress.

My imagination helps me get so much done,   Don’t get me wrong, if the pain will be resolved with rest, I’ll rest.  But I’m in pain all the time.  So if I avoided things just because of pain,  I would not get anything done, ever.  So to get myself motivated, I will make a task sound fun or challenging. Here is one example.  I call exercise, “Studying for my pulmonary function test.” Regular exercise not only helps my circulation, it helps my lungs get the movement they need to keep them functioning properly.    Sure, I can survive a few pounds, but I cannot live without my lungs.  I believe that in order to be able to keep them, they need exercise.  Now, in a healthy person this is true.  I don’t know if it’s helping to keep my pulmonary fibrosis from spreading, but I pretend it is and it helps me break through my wall of pain to get those lungs moving.

I will wake up some days in more pain than usual.   So rather than say, “I feel awful.”  I have a better story.  While I was sleeping,  Gnomes put me in a canvas bag, dragged me down then up the stairs at least three times, gently placed me in bed and lovingly tucked me in like nothing happened.  Blaming gnomes is just more fun. Funny I mention that because when I am on a consistent exercise routine, the Gnomes visit me less.

There is one draw back to my superpower.  There are times I do it so well and graphically, I scare the pants off my friends and family.   So I do need to keep it hidden.

Finally, one last example of how my imagination really helped save the day.  In 2011, I finally got a port o cath. It’s a device, surgically placed in the right side of my chest.  It’s pink- yup, it really is- shaped not exactly oval but not exactly round with a one way valve and three raised bumps. The bumps make it easy to find the valve under my skin so an IV can be placed into the valve.  The valve leads to a tube that goes into the big vein that goes into my heart.  The tube ends probably less than an inch from my heart.   How do I explain that   to a 7 year old?  I have no fear, my imagination is here! I told my son, I’m now part transformer.  They put an adapter into my chest to make it easy to give me medicine.  Of course, every super power has it’s weakness and for my imagination, that is reality.  My son responded with,  ”That’s cool Mom, but what is it really called?”

My superpower saved the day because it helped me get over my fear of explaining a simple medical device to my son.  I tend to overcomplicate things and my imagination opened the door to an honest conversation with my son.