Tied tongues, cracked heels, loose sphincters . . . Oh my!

Like Dorothy, I am not in Kansas anymore, or any other normal place. . .  I have entered the Land of Scleroderma!

When I was finally diognosed I had never heard of scleroderma. Maybe neither had the doctors that had all misdiagnosed me for about three years. Some diagnoses were carpel tunnel, (the neurosurgeon wanted to operate on both wrists and elbows) dermatitis of the hands and feet and rheumatoid arthritis. After I retired to the small town where I had renovated my Victorian home, an eruption on the joint of my pinky finger became infected with staph and I went to see a local doctor to get it treated. He immediately recognized my symptoms as scleroderma, at least now I had a name for my physical ailments (my body was filled with inflammation). 

Here are some of the symptoms that affected me:

• Dry and patches of hard skin on hands and feet that often led to cracking,
• Burning sensation in the balls of my feet,
• Stiffness in joints, 
• Fingers turned white when cold,
• Tight tendons in my forearms and my hands lost some flexibility,
• Weight loss,
• Itching especially across my back between the shoulder blades,
• Finger and toe nails became thicker and stronger,
• Fatigue and body weakness,
• Silent acid reflux
• Trouble swallowing - gastroesophageal reflux disease (GERD),
• Ulcers and calcification on pinky fingers and
• Last affected was ability to speak clearly. 

So now what? I had my own designer disease, scleroderma that affects each person differently. On October 17, 2012, the day I received the official diagnosis, I flew to California to visit my son for Halloween. While there I was able to see a GI doctor who scoped my esophagus and upped my dosage of pantoprazole sodium. For the first time in several weeks, I was finally able to eat more than soup. Because I was having trouble finding a rheumatologist that would take me as a patient within six months in Utah (not really Kansas), I opted to seek treatment in California. 

I joined a scleroderma support group and chose to receive further diagnosis and treatment at UCLA medical center. I was fortunate to get in to see Dr. Philip Clements one of the foremost experts on this rare disease who has diagnosed and treated patients for over 40 years. In February 2013 after a battery of tests to check lungs, liver, kidneys and other functions, he prescribed medication. I was one of those 1% that had developed inflammatory vasculitis, and at that point my muscles had become so weak because of the inflammation I had trouble getting from a prone position to sitting up. The doctor said my muscles were like mush. I could no longer drive, my walking was unsteady and I would have to lift my leg up with my hands to step up on a curb. I was afraid if my body got much weaker, I would be bed ridden. I tried walking so get some exercise, but it did not help..

The 60mg of Prednisone immediately took effect and my muscle strength began to return. Within a few weeks my hands and feet stopped cracking, my hands became more flexible and the itching stopped. As a grandma on steroids, I feel better every day! 

The purpose of this blog is to share what helps me on my challenging journey to deal with or conquer my ailments. Also to share what did not work.