systemic sclerosis – Page 12 – Yarn, Books & Roses

Return to the Garden: Hello Slugs, I’m Back!!

Summer heat has arrived, I’m feeling better, and it is definitely past time to attend to the needs of the garden. Yesterday I weeded out front in the shade of the morning and then mowed that lawn in the evening (well, I actually mowed only half of the lawn. A neighbor then arrived and took the mower away from me to finish things up. I love my neighbors!!) Look at what has been happening out front while I was engaged in an indoor scleroderma-induced slug-fest.

Rose Bush. — My new roses (Hot Cocoa) that I planted a couple of months ago burst into bloom!

Roses — This is what the blooms look like as they open. I bought these roses as they are recommended for my location (Colorado, USA) even though I wasn’t completely sure about the color. I’m really pleased with the dusty orange color now.. Look how healthy those leaves look! Let’s hope the grasshoppers don’t notice…

Ice Plant in Bloom. — The ice plant that I planted along the front walk has also gone into overdrive. The color made me so happy I didn’t even mind pulling the weeds!

This morning I moved into the back yard with the cats to see what I could accomplish in a couple hours of coolness and shade before the afternoon heats up. Oh dear, it is somewhat of a jungle, and the cats have been running wild.

Cat in Grass. — Guess I need to mow this lawn too. See how intently MacKenzie is looking upward? He’s watching the squirrel the cats had treed earlier this morning after chasing it all over the yard.

Cat nesting in plants. — Yellow Boy has been busy building nests in several locations in the yard and the garden.

Cat in Yarrow. — The yarrow he’s nesting in is all over the garden and I need to rip most of it out. He was so cute I just let him have it today. Wait a minute… I think yarrow can be used to dye wool. Maybe I shouldn’t rip this out yet…

Pincushion flower — My pincushion plants have spread like crazy and the blooms are looking good! Please ignore the grass in the photo. That’s what I did and I feel much better for it. 🙂

Napping Cat — MacKenzie has also staked out a nice shady location to nap in near the cat mint. He is my good boy: he’s sleeping on dirt and not in the middle of a plant. 🙂

Things are looking much better than I thought they would. I weeded like crazy, filled up two garbage sacks, and then planted some new flower seeds in one garden where a rose died over the winter. By then the day was heating up and I was starting to feel a little dizzy again. Time to head back into the house to rest up for afternoon knitting and lawn mowing later.

The best part of the morning? I didn’t see a single slug!!

Knitting Updates: Slug Time

Gosh. Life has really been clobbering me lately. My systemic sclerosis (a type of scleroderma) has become more active this month, and as a result I have been laying around like a slug thinking about the slugs in my garden and posts that I should be writing. (As a special type of irony this is Scleroderma Awareness Month. I’m encouraged to take a pledge to explain about scleroderma to at least one other person. Fabulous. When I feel better I will do that! Post to follow in the near future, or at least before the end of the month.) Predictably I haven’t done anything about the slugs, but I have been collecting pictures and notes for posts. As soon as I start to feel better I will be posting like crazy. 🙂

I am not, however, feeling too poorly to knit. I mean, let’s be serious here! Knitting is Life!! Since I have been carefully rationing my energy expenditures the last couple of weeks I devoted some time to shopping the yarn stash and getting going on some great projects. Say hello to my new companions while binge watching Netflix (how is it possible that I never watched Orange is the New Black before? If I was incarcerated would they still let me knit? If I sent Piper some cute fingerless mitts would she wear them while fixing electrical equipment? See where my mind goes while I’m living the life of a slug? OK, enough of this. Back to the topic at hand…)

June sock — I got started on the June 2015 sock (Petal Socks by Rachel Coopey). Here are the project notes on Ravelry if you would like more details.

Finished sock. — I finished the first June Sock last night. This is the right sock; the left will have the lace details on the instep reversed so that the finished socks mirror each other.

What can I say about this sock? It was pretty easy to knit. The lace for the legs divided evenly on three needles and the chart had a 6 row repeat, so the pattern was easy to manage. When I got the heel turned I switched to two cable needles which worked really well and kept the lace on the instep (which has more stitches at this point) easy to manage. This sock fits my foot well and is nice and high on my leg which will be welcome warmth this winter. 🙂 The lace pattern doesn’t show well with this yarn, but it is so cute I’m over it.

Joker and Thief Yarn — Yarn to knit the second The Joker and the Thief shawl.

When I originally put together the yarns to knit The Joker and the Thief shawl by Melanie Berg I struggled to make up my mind. I ended up packaging together two sets of yarn. I already finished the first shawl a few weeks ago and am really happy with it. This week I also cast on and started the second Joker so I could see how the colors look together. What do you guys think?

Some of my knitting friends are turning out summer tops like crazy. Every time I go to knitting group on Wednesdays at my favorite yarn shop there is a new top being shown off. I am inspired! I am motivated! I am drowning in knitting projects, but since when did that ever stop me? I found a cute tee in the current Interweave Knits Magazine, located 10 skeins of Linen Jeans yarn by Borroco in my stash, and cast on.

Knitted top. — This is the start of the Clove Hitch Tee by Courtney Cedarholm.

I may not have enough yardage for the sweater as shown, but since it is knit from the top down I figure I can knit until I run out and then cast off. Hey, it’s a plan.

Time to go lay down again. Have a good week knitting everyone.

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!

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.