scleroderma – Page 12 – Yarn, Books & Roses

In Pursuit of Joy: Out of Control (Part 2)

Control is a thing that is highly over-rated. I was a classroom teacher and learned to just get over it. The art is to savor the chaos and to keep steering things along in the right direction while understanding that learning, successes and growth come at their own rate. Knitting, scleroderma, life: lay your best plans, hope for the best, but know that dropped stitches, hail storms, and bad lab reports are a fact of life. Surrender to joy when you find it, and don’t sweat the other stuff.

It’s been 6 months since my diagnosis for limited systemic sclerosis (scleroderma), and for the most part it hasn’t been all that rocky. I got through the first round of medical testing with only three hospital bracelets, my doctors were nice and mostly informative, and some of my symptoms have subsided thanks to the immunosuppressents that I am on. New symptoms have appeared, however, and some surprising results showed up in routine blood work drawn two weeks ago. (OK, I was surprised. Now that I think about it, this is why there was so much medical testing 6 months ago. My rheumatologist was probably expecting this…) Even through I was warned to stay off the internet (really, they thought that would work?), I pursued the possible causes for the test results and went to PubMed to find out if there was a correlation with my symptoms, the test results and the auto-antibody profile that I have.

Well, crap!

OK, now I have a list of specific questions to ask the rheumatologist when I go see him next week. The internet can be a scary place, and sometimes ignorance is bliss, but I think that it is best to tackle these things head on so that I can make informed decisions. Still, I was a sad puppy at the start of the week which was one of the reasons I cast on new projects that facilitated smooth knitting and a zen like calm. Three projects at once? Sure. It’ll be fun!

Yesterday I decided that it was time to fight back; I packed up my purse, my knitting, and headed out to find some joy. Where can these things be found? At the local nursery and my favorite yarn store, of course!!

Look at the plant that I found! Happy, happy colors. I bought this and a cute little cyclamen in a hot pink.

Then I headed off to Colorful Yarns in nearby Centennial, Colorado where I knew ladies gathered to knit together on Wednesday afternoons. Oh my goodness, what a good idea that was. I had a great time knitting, was inspired by the yarns and projects of the other ladies and was even was treated to a decadent snack. (Rice crispy treats made with Nutella and drizzled with chocolate! Hello… if you are hunting joy, chocolate is always a hot ticket!! This recipe looks like what she made. Yumm!!) I made some friends and will definitely be going back next week. And the best thing? I was in a yarn store!!

No one should ever go into a yarn store while facing down mortality-related issues linked to their health status! Ever!! You can predict what happened here…

There was a whole section with newly-arrived cashmere blend yarns. Oh dear. — There was a whole section with newly-arrived cashmere blend yarns. Some with sparkle. Oh dear.

Green Yarn — I had never heard of this yarn label before. Hello, beautiful. This yarn is to dye for!! It is cashmere/silk/merino, and if ever there was a yarn that wanted to become art, this is it.

Blue yarn — Same label, but all merino. Won’t this make a happy pair of socks? It’s hard to see in the picture, but the colors just glow.

Cofetti Yarn — It is not possible to walk out of this store without some Zen Yarn Garden. This is 20% cashmere, and the colors are happiness guaranteed. This colorway is called confetti. 🙂

Yarn Haul — Here is the entire yarn haul hanging out with me while I eat lunch outside with my cat MacKenzie. How much fun (and out of control) is this? You are looking at JOY, people!

Time to cast on even more projects!! It is time for me to knit, knit like the wind.

This is me spitting in the eye of scleroderma.

February 28: Rare Disease Day

I got a newsletter in my email box yesterday that let me know that this special day was upon us. Wow. A day just for me and the other people who have to explain their medical status to friends, family, and medical providers such as the dentist. Wait, it isn’t for me? It’s for my disease? Since systemic sclerosis is an orphan disease that no one has heard about this day is set aside to introduce it to everyone. Isn’t that special! Ta-da! Everyone, please meet scleroderma!

What is a rare disease you ask? Well, that is a good question, isn’t it? Off to the internet I went to find the answer.

In a nutshell a rare disease is one that affects very few people. Most of these are genetic, or at least have a genetic component, but there are some others such as the autoimmune disease that I have that also fall into the category. According to the Rare Diseases Act of 2002 a rare disease is defined as one that affects less than 200,000 people in the United States. Since the Scleroderma Foundation estimates that 100,000 people in the US have systemic sclerosis it meets that criteria. Oh, I guess that’s why they sent me that information in the email.

I’ve been kind of thinking about what this means in practical terms. If I tell someone that I have scleroderma (thinking that I have a better chance that they might know something about it since the systemic sclerosis that I have is a subtype of scleroderma), they get a blank look on their face and say that they’ve never heard of it. The next thing that happens is understandable, and very human, but also unfortunate: they immediately assume that the illness isn’t very important since they never heard of it. The conversation moves right on to something more understandable.

My hairdresser told me a story last month that haunted me for days. Her step-daughter had a number of autoimmune conditions that included fibromyalgia, IBD, and something that affected her joints. She had extreme fatigue. She kept trying to talk to her father about what was happening to her, and how fearful she was, but he discouraged conversation as he thought she was “milking the situation for attention.” She died at Thanksgiving, and he is being eaten with remorse. What a mess. Her condition was mostly invisible to an outside viewer, and since he didn’t know anyone else with it, he incorrectly disregarded the impact it was having on her.

Depression and a feeling of isolation is a big issue with rare diseases. Most of them are chronic, they can be progressive, and there is no cure. Once the diagnosis is made the patient begins living an unpredictable life with an uncertain future. Without a strong support system it is hard to deal with this stuff on a day-to-day basis.

There are a lot of rare diseases, (this site has a database if you are interested), so no one can be expected to know a great deal about any one of them in particular. If you should encounter someone who has one, however, it would be nice to ask them some questions and then to really, really listen to their responses. What is it? How are they coping? And if this is a good friend or a family member, what can I do to help?

To all my peeps with chronic conditions (hey, lupus girls, I am talking to you!!), knitting friends and those of you afflicted happily with bibliophilia, I have one thing to say:

Happy Rare Disease Day everyone!

WIP Wednesday: Half-Finger MItts and a Fabulous Hitchhiker

Thank heavens we had a sunny day. I shoveled the snow off the deck so the cats could get outside and I would have a place to lay out knitted items for some pictures. As usual MacKenzie had other ideas about this.

Cat and yarn — I turn my back for just a second and there he is, chomping yarn and putting hairs onto everything…

Still, I got some shots during beaks in the action, and here is what I’m working on right now.

Red alpaca half gloves. — This yarn is Blue Sky Alpacas’ sport weight. It is a two ply yarn made of 100% baby alpaca.

I really liked fellow blogger Andre Sue’s half finger mitts that she shared with us. (Here’s her pattern). My hand is really short and fat with nice swollen fingers so I had to make alterations to her pattern so it would work on my hand. (“Oh my, your hands are really puffy,” commented a nurse while getting me ready for an endoscopic GI exam. “Did you know your fingers are turning purple..?”) Thank you Reynaud’s and scleroderma. I’ll be putting these fabulous alpaca half-gloves on for the next visit to the gastroenterology torture chamber.

Yep. That's my hand. — Yep. That’s my hand. Short, wide and puffy.

I wear lots of layers these days including these comfy kimono sleeve sweaters from J.Jill. I made the cuff of the gloves a little longer than Andre Sue’s pattern called for so that they would cover the gap between my hand and the bottom of the sleeve. I’m thinking that I want to add some embellishments that I will share with you all when I get the pictures of the finished mitts posted. Maybe by Friday if I hustle. There is a big snowstorm coming this weekend, and they sure would be nice and warm to wear…

Closeup of yarn. — Don’t these colors look like they were made to be with a grey sweater? This is Serenity 20 from Zen Yarn Garden in the colorway Jewel.

I’m also working on another Hitchhiker made with the fabulous 20% cashmere hand-painted yarn that practically threw itself at me last week (that would be the yarn in the serendipitous phenomenology post). I have about half of the points done, but still a lot of yarn left to knit as the shawl gets wider the longer you knit. I just love the colors and it is working up to be really nice; the hand and drape will be just what I want. Can’t wait to get this one done too.

Well that’s it for this week. I plan to really get cracking on finishing all of these up. I’ve been looking at shawl patterns, and I have a couple of weeks of knitting before I need to start on the March New Year’s resolution sock. Gosh, it would be really nice to have a new shawl (I mean, a shawl that is NOT a Hitchhiker. You know, something with lace in it that involves reading a chart… Beads too. I definitely need beads). I wonder if my family would like shawls for their Christmas presents?

Time to go dig in the stash!!

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.

Knitting in the Key of LIfe

“Now, let us all take a deep breath and forge on into the future; knitting at the ready.” – Elizabeth Zimmerman, The Opinionated Knitter

The last four weeks have been terribly hectic for me. I’ve been fighting a chronic condition for some time now, and in May it decided to get ugly. My wonderful doctor ordered a huge battery of tests, and wouldn’t you know it, I tested positive for an autoimmune condition. “Good to be diagnosed, but also a shame,” my doctor tells me. Things have been busy for me as I’ve completed batteries of additional tests, visited new doctors, driven to new clinics, and started new medications. Huh. It’s like I’m starting a whole new life.

How best to respond to a body blow like this? Obviously the thing to do is to stay calm and knit! I have knitted though all the crisis of my life. I knitted a new sweater the week that my mom died, made a pair of socks while sitting in the ICU with an ill son, and created an afghan while recovering from surgery. Stranded in an airport for two days? No problem, I have knitting! Knitting can sooth and center me in a way few other things can. I feel calm, hopeful and pleased to be creating something of beauty and purpose during the process. Cheapest therapy around!

So, I made a pair of socks for my sister’s birthday present the week I was diagnosed. I then started a big project for one of my friends (a cushy vest that she can wear to Colorado Avalanche hockey games), and bought the yarn to make little purple mitts with owls on them for my grand-niece who just had hand surgery to repair a badly mangled finger. Still, I needed more. I needed to make… a cat!!

My cousin loves all things cat. We saw this meme that has been making it’s way around Facebook that shows a box of kittens with the “Crazy Cat Lady Starter Kit” stenciled on the side. Of course she asked for a starter kit of her own. Of course I started looking for a cute pattern to knit a cat. This pattern by Kath Delmeny fit the bill.

Knitted Kitten — First kitten in the “Starter Kit” crate. We’ll have to get a larger crate as I add kittens!

Here it is. Cutest cat ever! I finished it today (on her birthday) and I couldn’t help posing it all over the yard. I’m so pleased with how spunky it is, and can’t help but imagine that it will be a little rascal that gets up to no good once it’s at her house.

Kitten in Flower Pot — Doesn’t this look like a kitten that will break house rules?

Why do I knit? Because it makes me feel wonderful!

That’s the best medicine ever.

“Knit on, with confidence and hope, through all crises.” — Elizabeth Zimmerman