February 28: Rare Disease Day

rare disease day
Logo courtesy of Rare Disease Day. To find out more information about this event visit http://www.rarediseaseday.org/

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!

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Stash. Yarn. Shawl.

I am finishing up the Hitchhiker that I have been working on for the last two weeks, and then that is it. My needles will be bare. As soon as I have knitted the last three teeth on this baby it is over. To make things worse I also just finished reading a series of books, and haven’t found a new one to settle into. I am going through a serious slump. I’ve been listlessly wandering the house when I haven’t been out shoveling snow. I’m even considering vacuuming and cooking vats of comfort food. I’m making the cats nervous. I need new projects!!

Hitchhiker
Here’s my Hitchhiker back at the beginning. It’s almost done; I should finish it tonight.

Notice that I didn’t say I needed more yarn. The truth is, I always want more yarn. It’s an endless need with me. To try to nip a trip out to the yarn store in the bud I went online to check patterns on Ravelry and then started digging in the yarn stash. I think that I want to make some shawls now. Lace and beads!!

Well, here are the two big contenders on Ravelry. The first one is Edith’s Secret by Kristen Ashbaugh-Helmreich. I was aware of the Downton Abbey MKAL that was happening using Lorna’s Laces yarn (hosted by Jimmy Beans Wool). I kind of wanted to make a shawl with them, but there were 5 choices of yarn colors, and without knowing what the final product would look like I kept procrastinating and never did join in. The shawls are now done, however, and gee… they look really nice.. The different color combinations are up on Ravelry, and I have a better idea of what I like. The shawls have lace and beads… I think that I really need to make one of these.

The other shawl that I think that I’ll make is Sidere by Hilary Smith Callis. It calls for a heavy lace-weight yarn, but I’m thinking that I can get away with a light fingering and throw some beads in too. Anyway, the plan is to make an Edith’s Secret first, and then to knit a Sidere.

Into the stash! I need two contrasting colors of yarn for Edith’s Secret. One should be variegated, and the other just a monochromatic painted yarn. I have got to have some of that! I need at least 420 yards of each color, and it should be fingering.

Yarn
Wow, this is cool. I love these colors. There may not be enough yardage as each of these is only about 385 yards. Several people on Ravelry said they almost ran out.
Yarns
These yarns have enough yardage, and people will certainly see me coming. It could be that these two will be a little more color saturation than I can pull off in a shawl. Time to go look at more neutral yarns.
Yarns
I love this variegated yarn. The pink is laceweight, and will need to be doubled to use. It’s do-able, but seriously, I’m a grandmother. Do I want to wear this shade of pink?
Yarns
This is it!  This is the same variegated yarn as the picture right above, but I guess the snow and the grey tone it down in the picture. I’m going to make the lace details in the grey yarn and then use beads that accent the rose colors in the variegated yarn.

Well, that was easy. Seriously, I was loosing sleep over this yarn selection process. Today I wound all of the yarn that I thought was excessively yummy (even if I wasn’t sure what I would knit with them right now) and loaded my project bag with the cakes of yarn. I am happy! I have projects lined up again, and I am ready to cast on!

Oh, by the way, it’s almost March. Here’s a preview of the March New Year’s resolution sock.

Yarn and book
One of the yarns that didn’t get chosen for the Edith’s Secret shawl will become the March sock!

WOOL by Hugh Howey: That’s no spaceship… it’s a silo!

I’m always on the hunt for a good science fiction novel. Like many other readers of the genre, I’ve run into my share of books set on multi-generational space ships traveling to distant stars. Some of these books are great, and some not so great. The problem, I think, is in creating a believable world within the boundaries of the ship while spinning the tale for the reader. Some authors get lost in the technical details of creating an independent, self-sustaining world and social culture within the ship and forget that they meant to tell us a story. Others remember the story but it is set in such a flimsy framework that it just doesn’t work. Every once in a while, however, I come across a book that strikes the right balance and is just great.

The novel Wool

Hello, Wool by Hugh Howey! This book isn’t set in a spaceship traveling to a distant star, but in a silo with 144 levels set deep into the earth. The silo is closed off and completely self-contained, and the few thousand residents have lived within it for hundreds of years. Everything on the surface of the planet is now dead, and the only chance for the survival of our species is to stay within the closed ecosystem of the silo until the earth recovers. Instead of traveling to a distant location, the residents of the silo are time travelers to a distant future and the journey began a long, long time ago.

Here’s the deal: nothing is what it seems. It isn’t clear how the earth was destroyed, and the residents have no notion of any other world other than the one that they live in; their history was lost when computer servers were wiped during a past rebellion. There is a rigid social structure within the silo, and reproduction is carefully controlled by lottery while dead citizens are “recycled” in the gardens that grow food and produce oxygen. The lowest levels of the silo contain the critical power plant, the mines and the oil production facilities. The top levels contain the workers of the more “white collar” occupations. Gluing it all together are the major administrators: the mayor, the sheriff, and the head of the IT department. It is essential that the status quo is maintained. Dissension and rebellion are ruthlessly repressed, and it is absolutely forbidden to express a desire to go outside; to do so is a death sentence.

Mr. Howey has created a fantastic immersive world within the silo; it is believable and hangs together extremely well. (It is so real that fans have been sending him schematics of the silo…) The story is also great; it begins with the death of the sheriff and a subsequent power struggle. As events unfold it quickly becomes apparent that the world in the silo isn’t what it should be; lies are being told, there are mysteries within mysteries, and the hunt for the truth is very dangerous. There are deaths, rebellions, a heavily guarded IT department, and so many secrets. Our girl, the newly recruited sheriff Juliette Nichols, is determined to get to the bottom of things. The trouble is, the truth may be even more dangerous than the lies.

I loved this book! I was dragged in by the suspense and driven to understand what was going on. The characters are complex and well constructed; their stories were so real to me. I bought the next two books in the Silo series, Shift and Dust, and just kept reading. These books  bring new characters into the story, and as the pages went by I started to understand how everything hung together. The resolution of the story and the integration of all the independent characters was a little weak at the end, but altogether the three books were great and I am on the hunt for another book by this author. Gosh, I hope they make a movie of this!

If you are a science fiction fan that doesn’t necessarily need a space ship, this book series is for you.

 

A Tale of Two Mitts

I bought a really fun skein of hand-dyed yarn a few weeks ago. It is another yarn from Zen Yarn Gardens Serenity 20 in the colorway Burning Bush. I cast on to make a pair of vine lace mitts a couple of days later, and here is how they turned out:

stuff
These two mitts really are the same size. It was too cold to take another picture. 🙂

Cute, huh. These mitts fit really well, and they go great with my black, grey and fushia tops. The colors in the mitt, however, didn’t really stand out the way I thought they would. The grey is almost gone. I decided to make a second pair of mitts in simple stockinette to see how that would change the way the yarn looked. Here they are:

Burning Bush MItts_Stockinette
Same yarn, totally different look. I think that these will be easier to wear over my gloves.

Wow. What a difference the pattern made. Both mitts are comfy, but the second pair will go a lot better over my black gloves and with my new grey sweater. I do think that the stockinette pair shows off the “burning bush” characteristics of the yarn. But the lace mitts are really cute. I made both pairs with the same number of stitches and shaped the thumbs the same way. Which do you guys like better?

I haven’t written up the pattern for the garter vine lace mitts, but I did write down the details in my pattern notes on Ravelry. Here’s the link if anyone is interested.

 

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…

Hitchhiker
I just love, love, love the feel of this yarn. 
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!!

FO: Cat Supervised Hitchhiker

I really like my cat MacKenzie. I found him one day standing in a cage at PetsMart. The previous owner had walked in and surrendered him a few weeks previously. You guessed it: he was a bad boy. He was such an obviously intelligent cat I decided to take a chance and brought him home with me.

Cat
Here he is out in the garden. He doesn’t look like a slasher of walls, furniture and curtains, does he? On this day he chased a poor garter snake all over the garden until I rescued it.

Oh dear, there was not a surface of the house that he didn’t try to sharpen his claws on. He knocked things down and broke china. He tore up my plants, dragged his toys all over the house, and was in general an instrument of mayhem. I bought more toys, got scratching posts for almost every room of the house, adopted a second cat to be a companion to him, and gave him yarn to play with. I wired the backyard fence with an “invisible fence” wire and trained him to not jump out of the yard so he could run laps out there. He became a happy cat. My walls and furniture were safe again; he now loved all things wool.

Now that I’m retired and he is older, he is my constant companion and participates a little more in my craft activities than I would like. As usual, he was involved in my latest Hitchhiker.

Knitting with Mac
Knitting outside with Mackenie. He’s too big to fit on my lap, so he covers my legs while I knit.

Yep. That’s why all my knitted gifts come with love and cat hair. The weather was really nice again today so I ate lunch outside and knitted the Hitchhiker for a couple of hours until it was done. Snow is coming Sunday, so I decided to enjoy the nice weather and get some sunshine while I could.

 

Finished Hitchhiker
Here it is! This yarn is Noro Taiyo sock yarn. It’s half cotton, so this will be good for warmer days. The shadow  is MacKenzie hovering to the side; he wants to lay down on the shawl, of course.
Hitchhiker
and this is what it looks like on me.  Can you see some cat hair on it? 🙂
Cat and computer.
Now I’m writing this blog with a tuckered out MacKenzie sleeping on my legs. All that supervision is just exhausting, I guess. 

I’m thinking that maybe I should make him a wool cat bed.  He would enjoy helping with that!

The Art of Serendipitous Phenomenology

When I used to work in a medical research lab one of my co-workers described what we did as mastering the art of serendipitous phenomenology.  I think that he meant that we (hoped to be) alert, observant, curious and reflective about events around us. Big discoveries can occur from chance observations if one pays attention; one of the famous ones is Alexander Fleming’s discovery of penicillin. Another of my coworkers discovered an important immune system inhibitor (which led to a patent and eventually a drug. How cool is that?) Of course, there aren’t any big scientific discoveries in my life right now, but I have had a run of fun occurrences lately. It’s been making me think about serendipity, and that perhaps one of the secrets of finding joy in every day living is in mastering the art of serendipitous phenomenology.

So, here is my run of fun;

Starbuck's Card
I went into a strange Starbucks Sunday on an impulse while picking up Chinese takeout. I needed a new Starbuck’s card as I had just lost mine. Look at what I found!! The hard-to-read text on the left says, “Year of the Sheep”.
Book.
I was in a slump this weekend because I had just finished a good book. I forced myself to start reading the next book on my list, and it’s a science fiction with the title of WOOL!!  It’s a really good book, too. How much fun is that?
Yarn
Serenity 20 sock yarn by Zen Yarn Garden. The colorway is Jewel.

I was already contemplating serendipity when I arrived at my favorite local yarn store yesterday. I had a hazy notion that I wanted to get a cashmere blend yarn that would look nice with grey to make another Hitchhiker (by Martina Behm). Going through the sock yarns with a friend a skein suddenly fell out of its cubby and landed on the floor at my feet. “Well, there’s your yarn”, said my friend. There it was indeed! This yarn is 20% cashmere. The color is perfect for me and my new grey sweater. After going through all the yarn we could not find one that was a better fit.

Hey, who am I to argue with the universe? This yarn is clearly destined to  become a Hitchhiker. The answer to Life, the Universe and Everything. Obviously I needed to buy this yarn.

See what I did there? Even though this yarn was expensive I was able to absolutely justify buying it with my smoking post-Christmas credit card.

And that is the Art of Serendipitous Phenomenology, my friends.