Scleroderma – Page 15 – Yarn, Books & Roses

2015 Books #7 & #8: Christmas Books

Last week wasn’t very good for me health-wise. I have systemic sclerosis (scleroderma) and out of the blue I suddenly developed breathing issues, noticed that I had edema in my arms and legs, and struggled with the cold weather more than normal. Seriously, my skin hurt and my fingers kept turning blue!! That’s how I ended up spending most of the week bundled up reading and knitting. (OK, there was a trip to the doctor and a visit to radiology, but who wants to go into that!) Luckily for me my sister and cousin sent me Barnes & Noble gift cards this Christmas, and I had some really good books waiting for me on my Nook. What could have been a sad little week turned into some awesome knitting and an immersive journey to Kentucky and the Arctic through the medium of two fantastic books. Here they are.

The Secret Wisdom of the Earth by Christopher Scotton

I’m always haunting Goodreads for a good book, and this one came up on my radar a couple of weeks ago. As soon as it was released I bought it for the Nook. What a good decision that was! I began the book Saturday of last week and read steadily over the next couple of days. Wow! What a great story! What the heck was I going to say about this book? I was too stunned to even decide what I thought.

You see, this is a book of layers. It is about so many different things, and yet the threads of the story are so well intertwined you hardly notice it as the many themes and story lines are happening at once. So, in as few sentences as I can, here is what the book is about.

Following the death of his little brother in a horrific accident, 14 year-old Kevin and his mom go to live with his grandfather in the Appalachian coal mining community of Medgar, Kentucky. Kevin bonds with a local boy named Buzzy who is wise in the ways of the woods, and Kevin’s grandfather employs him as an assistant in his large animal vet practice. Just when it seems that the book will be a standard coming-of-age novel other themes emerge in rapid succession. This book is about environmental issues, the relationships between sons and fathers, economic greed, poverty, struggles for power, and the destructive force of homophobia. It is a murder mystery and a heroic wilderness survival story. It is a story about friendship, values, healing, and redemption. I was captured by the story, entranced by the beautiful narrative, and stunned by the turns in the plot. Wow! It was a fantastic read!

In the Kingdom of Ice: The Grand and Terrible Polar Voyage of the USS Jeannette by Hampton Sides
I was still spinning from the experience of The Secret Wisdom of the Earth when I decided to read a non-fiction book. Once again, I had checked this book out at Goodreads before I bought it, and several of the readers mentioned in their reviews that it was engrossing and read like an adventure novel. Take a chance, I told myself: buy it!

Yep. Another good decision. This book is the story of the voyage of exploration undertaken by the USS Jeanette in 1879. Her mission was to break through the ice belt in the north, reach the open polar waters and finally make it to the North Pole. Yep. In those days it was a commonly held belief that the North Pole was located in a warm open sea filled with teaming life. It was entirely possible, many argued, that there was a lost tribe of humans there. The Arctic was the great unknown, and there was huge public and national interest in the exploration of this region. It was the equivalent of the race to be the first on the moon. The USS Jeanette was the United States’ moonshot, and the cost of the expedition was funded by the most powerful newspaper of the time, the New York Herald.

The book is the story of the people involved in this grand adventure and a factual account of the events before, during, and after the USS Jeanette’s Arctic journey. It is based on many sources including current accounts in the news, personal journals, and the ship’s logs. It is rich, fascinating, and reads like a novel. It is a window into another time, and yet the motivations and emotions of those people echo our own times. It is a love story, an adventure story, a tale of survival in the face of horrific conditions, and even better, it is a story of science. (Hello, old biology teacher here…) The officers and crew of the USS Jeanette went to heroic lengths to collect and preserve maps and data that changed the world’s understanding of the Arctic. After the voyage of the USS Jeanette, it was never again assumed that the North Pole was located in an open sea, and all other efforts to reach it involved trips over sea ice. Just as the trips to the moon changed our view of the Earth, so did the voyage of the USS Jeanette.

A week has gone by since my first sad days of unhappy symptoms, and I am better. (Except my ankle, which has decided to hurt. What’s up with that?!) I dyed some wool, started a new knitting project, and am on the hunt for another book to read. I think it’s time for some science fiction.

Life is Uncertain, Knit Fast!!

Yesterday was Thanksgiving. A time to be thankful for the good things in life. I have always thankful for good health in the past. This year, for the first time, that wasn’t true.

There can be no doubt about it. Things hadn’t been quite right for a long time. My joints hurt. I had a rash on my face. I sometimes had trouble swallowing, and acid reflux was occurring on a regular basis. My hands were swollen and I had trouble moving my fingers. Fatigue was my constant companion. If my hands got cold my fingers turned white or purple, a condition called Reynaud’s. Sometimes it hurt to breathe. I kept thinking that if things got worse I would go to the doctor, but I never became so sick that I could justifying taking off work. As many people with chronic conditions do, I just made adjustments and kept going.

Then, without any warning, my digestive system rebelled in a big way over the course of one weekend in early May. Colitis? You have got to be kidding me! Feeling pretty uncomfortable I kept close to home and worked on landscaping projects outside, read books, and worried. After two weeks I contacted my doctor.

Tests were ordered. Everything was negative: there was no obvious infection. Relieved, I decided to just give things a little more time. There was one test result that did nag at me, however. My renal function was a little low.

Two weeks later, lying on the couch with aching legs and abdominal discomfort, it finally hit me. I have a rash on my face. My knees hurt. I have Reynaud’s disease. I have a low renal function test result. When tested in the past I had a positive ANA (anti-nuclear antibody) test. This sounded like one of those cases presented at the weekly seminars when I worked in a rheumatology research lab…

Alarms went off in my head. Lupus! I called the doctor’s office and scheduled an appointment for an exam to be evaluated for lupus.

Lab Tests — Good grief! This is how much blood was drawn to do my rheumatology testing!

“How is it possible that you haven’t already been diagnosed?” my doctor asked me. How indeed? Oh yeah. That adjusting and just keep going thing. She ordered a huge battery of tests for a comprehensive rheumatology screening, and told me no more gluten in case it was celiac disease. I was horrified. Celiac disease! I wasn’t prepared for that! “Celiac disease would be good,” she said. “We can treat that.” Believe it or not, at that moment celiac disease seemed like the end of the world. I left her office in a sad condition and counted the number of tests ordered while heading down the stairs to the lab. Twenty-two lab tests. Yikes!

Over the next week the test results slowly trickled into the patient portal where I could see them. Everything was coming back negative. Because of the rheumatology research lab job, I had some idea about which antibody test results were linked to lupus. The big lupus markers were all coming back negative. I began to convince myself that I was a big over-reacting baby. Then suddenly a note came from my doctor telling me that she was sending me to rheumatology for a consultation and three tests I hadn’t seen before appeared in my inbox on the patient portal. Positive results for auto-antibodies associated with scleroderma and Sjogren’s Syndrome.

Pills in case — Look at the great pill case that my sister sent me to help me keep track of all these meds!

At the end of August, 2014 I was diagnosed with both of these disorders and my new rheumatologist started me on medications meant to slow down the progress of the disease and to treat the symptoms that I already have. Eight prescriptions and three over the counter medications!! I have the type of scleroderma that is referred to as limited systemic sclerosis (CREST). This is not good news. I already have significant skin tightening on my neck, face and hands, and my digestive system has been impacted, but my heart and lungs are doing OK. In a strange way, however, I feel lucky. Very, very lucky and thankful. This Thanksgiving I continue to be thankful for what I have. I have been diagnosed, I’m on medication, I am retired and have time to knit…

This is just part of the yarn stash... — This is just part of the yarn stash…

Well, isn’t that a bitch! Here I am in possession of a world-class yarn stash, and I have a rare medical condition that may leave me unable to knit. The skin is getting especially tight across my right hand…

Luckily I am a master of adaptation. That whole adjust and keep going thing has prepared me for an event just like this.

Time to knit fast. Knit very fast! Just cast on and don’t look back.

Enjoy your gluten. 🙂

Winter is Coming: Knit Mitts!

It started for me one blustery winter day about 5 years ago. I made a quick trip in the car without wearing gloves and arrived at my destination with one finger dead white and numb. How bizarre, I thought. I went into the building, rubbed my finger until the circulation returned, and idly thought that I should mention it to my doctor the next time I saw her. I knew that it was Reynaud’s disease.

Over the years the Reynaud’s progressed to all of the fingers of my hands, and last year my toes joined the party. Instead of white my fingers now turn purple within seconds when exposed to cold. Pain is involved. As it turned out, Reynaud’s was the harbinger of things to come; three months ago I was diagnosed with scleroderma (systemic sclerosis), but that is another story. Today’s story is one of blue fingers, cold weather, and the world’s cutest mitt pattern.

I made myself a sweet little scarf out of a cashmere blend sock yarn last winter. I had some yarn left over so I made a pair of lace mitts from it using the Sweet Pea Mitts pattern (by Lisa Swanson) in the book Lace One-Skein Wonders (edited by Judith Durant).

Yep, just as cute as the scarf. Since hand circulation is a problem for me I started the thumb lower on the mitt (starting at my wrist) so it wouldn’t pull across my hand. This mitt is nice because the I-cord bind-off keeps the stitches at the top of the mitt firmly in place across my knuckles. Because they are light in weight I can wear them indoors while reading, knitting, and working in the house. Gee, wouldn’t it be nice to have some more of these…?

It was stunningly cold this November in Colorado. I went crazy with the mitt knitting. I now have three more pairs to match other shawls and tops in my wardrobe, and I am even sleeping in them. I wore them inside my mittens while shoveling snow, and they protect me from the cold steering wheel in the car. I can even wear them on top of light gloves. Take that Reynaud’s!!

Oh yeah. Maybe some Christmas presents were also produced.