Scleroderma – Page 14 – Yarn, Books & Roses

Knitting in Aurora

Without a doubt, I am in a mood. I have been feeling poorly for a couple of days now (I took my methotrexate on Monday, and this week it made me sicker than last. Hope this gets better as I continue…), but I needed to pick up prescriptions from the pharmacy and to run some essential errands (the cats expect to be fed on a regular basis; obviously they are out of control!!), so I dragged myself out of bed and feeling a little dizzy and wobbly I headed out.

Here’s the deal. The Kaiser facility where I pick up my prescriptions is right across the street from the Century 16 theater where a gunman (who will remain unnamed in this post) opened fire in a packed theater of moviegoers watching a popular movie on opening night. It was almost 3 years ago today when I woke up to discover that once again Colorado was in the news for a mass shooting, and once again it was happening in my home town. (Sadly I was a resident of Littleton, Colorado at the time of the Columbine shooting). This time the theater is in the heart of my shopping district, and today as I made my rounds to pick up a library book, buy cat food and made a quick stop at the book store to check (what else) the knitting magazines I was almost always in sight of the theater.

It is pretty heart-rending if you think about it. The police drove up the lawn and over landscaping behind the theater that night to transport victims to local hospitals. They drove on the street that I used to go to Kaiser in patrol cars carrying as many wounded as they could fit into their cars. It’s hard to not think of this as the shooter’s trial is now wrapping up after 45 days, and it’s impossible to avoid the day-to-day details of the events in the courtroom. As I entered the Barnes and Noble bookstore in the shopping center I wondered if that man had come here to also check magazines.

Knitting Magazines — Here’s the knitting magazines on an upper shelf mixed in with other fiber-arts crafting magazines. I counted 12 knitting magazines.

So, I am in a mood. I don’t feel well. I spend a lot of time knitting to cope with my altered future due to some serious illnesses. I don’t want to start a debate about gun control, Second Amendment rights, mental illness, the death penalty, the available of military grade armaments through the internet, or the value of explosive rounds. I don’t want to hear that we need more guns to stay safe and that teachers should be packing in their classrooms. Don’t do it!!

I’m just wondering if the world wouldn’t be a better place if bookstores carried a dozen hard to find gun magazines on their shelves, and there were 30 knitting magazines located at the level of children for them to look through. Wouldn’t it be nice if we all felt safe and dreamed of creating nice cushy scarfs, sweaters and mittens that would be beautiful and useful. That knitting was seen as an important meditative activity as wonderful as yoga, jogging, or any of the other stress-busters out there. That the economic power of knitting and other crafting venues drove a huge industry of creative pursuits valued by a large part of the population.

What does this say about us as a people that this isn’t the case?

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.

Starlight, a Joker and OMG: Empathy Cards!!

Wow. It has been really, really rainy here. I had three inches of rain in the back yard bucket (my very-low tech rain gauge) before there was a downpour with hail this afternoon. Needless to say I have been making good progress on my knitting this week. Here’s what has been going on.

I got the Sidere Shawl by Hilary Smith Callis finally done and blocked. (Yep. There was another battle with the cats during blocking. This time they totally outdid themselves. One of them THREW UP on the shawl and then tried to bury the mess by raking damp shawl parts over the evidence. I love my cats. I really, really do…) I think that it turned out nice.

Info about the stitch — The shawl used a new stitch to me called Starlight Stitch (Sidere is Latin for starlight) that really made it have strips of interesting texture.

Shawl in Tree — Here is the finished shawl hanging displayed by my ever helpful ash tree. The rows of Starlight stitch open to one side of the asymmetrical shawl. Here are the project notes on Ravelry.

As I was finishing up the shawl I realized that it was now May. Time for another sock!! (As one of my New Year’s resolutions this year I have been knitting a new sock each month using a pattern from one of my many, many sock books and some yarn from the stash. So far I have been good and only used yarn from the stash. Notice I haven’t mentioned whether the stash is growing or getting smaller at this point…) Monday I dug through the sock yarn and here is what I settled on for the May 2015 sock:

This sock is Milfoil by Rachel Coopey from hr book CoopKnits Socks. The yarn is Madelinetosh Sock in the colorway Grenadine. — This sock is Milfoil by Rachel Coopey from her book CoopKnits Socks. The yarn is Madelinetosh Sock Yarn in the colorway Grenadine. Since the sock is divided into two distinct halves with different patterns I decided to knit it using two small cable needles instead of my usual (and beloved) square double pointed needles.

Now that the Sidere Shawl is done I jumped right into knitting the first Joker and the Thief shawl by Melanie Berg. Woohoo!! This one is a keeper for sure, and is lots of fun to knit. Here’s where I am on it right now. The shawl and the sock are knitting up fast, which is a good thing as I have an awful lot of knitting going on.

This week has been one of reflection for me as I knitted along in the gloomy rainy days. Tuesday was the anniversary of my mom’s death from ovarian cancer. What a difficult time that was for all of us in the family. Now I am exactly as old as my mom was at that time, and I also am struggling with a serious condition. I’m noticing again some of the things that we dealt with during my mom’s illness: friends and family saying hurtful things, distancing themselves, and trying to make the illness seem trivial. If anything is said at all, it is so superficial or cliche that it reveals a total disengagement. What is up with that? It’s almost as if they are lacking in… empathy.

OMG!! Guess what hit the market this week? Empathy cards! The exact cards that call to the heart of every person struggling with a serious illness, and the life preserver for every person who just doesn’t quite know what to do or say. I can relate to these cards totally! These cards are created by Emily McDowell to fill that huge gap that too many of us are aware of where people of good heart and intentions struggle to acknowledge unhappy truths (some of us will never be old…) as they try to express their concern and support. Here’s what I’m talking about:

See what I’m talking about? One visitor told my mother that her terminal illness was a “remarkable opportunity” as it gave her the chance to plan the end of her life. I never allowed that person to come visit her again. People who say everything happens for a reason are smugly assuming that somehow your illness was something that you deserved (and they didn’t), or that it will somehow make you a better person. That is just wrong, folks.

Lemon Card — This happened to me! Not nice!

I bet you want some of these cards too. Here’s Emily McDowell’s blog about these cards and her store where you can buy your own. Emily is a cancer survivor and definitely understands the problem and the need for these simple vehicles to scaffold caring and meaningful communication of support for others dealing with a hard time. I know that people do care. We all need help sometimes to know how to show others how we feel.

So what other empathy cards should there be? I personally am tired of people telling me that they are glad that I’m so much better. (Say what??! I look better right now because I’m between naps and between crisis…) or that they will pray for me (Thanks! I appreciate that! What I really need, however, is someone who is willing to do some grocery shopping for me or even take me to my next major medical testing appointment of the gastroenterology torture chamber variety…) What about the times when people tell you that at least you don’t have __________ (some other disease that sounds worse to them), or ask if you have your will made? There has to be a great card using these comments!

Lots to think about while knitting on a rainy day.

Wednesday Update: Shawl, Sock, and a Rant

What a beautiful morning! My backyard filled with birdsong early and the cats began clamoring to be let out, so I got up, made a latte, and joined everyone in the early sunshine. It’s too soon for flowers (except dandelions which are now in full bloom!), but the promise of summer is there for the taking. My trees are blooming and there are little buds where the leaves are getting ready to burst out. It’s hard to not get a little excited.

I took advantage of the light to get knitting pictures. I finished a shawl over the weekend. Here it is:

Close up of shawl. — Here’s a close-up of the tip. There was a lot of color in the yarn!

Shawl on denim. — Here’s the shawl on denim. The colors look great combined with several things in my wardrobe. Yeah!!

Amazing yarn. — The original skein of yarn. It was a little intimidating with that “becoming art” label, but I’m happy with the product.

Now that I have one of the two shawls that I am working on finished I felt that it was OK to cast on the April 2015 sock. Here she is!

It was a really great week for me knitting-wise. I even coated myself with the best sunscreen on the market (SPF 60!!) and went out and planted my new roses. There were a lot of positives for the week except for… my scleroderma decided to kick my butt. My leg muscles now hurt, my knees have become swollen, red and warm to the touch, and I’m dizzy in the mornings. I have edema in my arms and legs. What is up with that!! My rheumatologist gave me some drug information to read (I get to pick which drug I prefer of two possibilities. This sounds pretty good, but during the week I realized that these are chemo drugs that I will be taking at a lower dose than cancer patients get. Bummer!) Still, I was having a happy week and being positive until one of my neighbors stopped by to talk to me while I was planting the roses, and he mentioned that if I would get out more often to exercise and get sunshine I would “get well”.

He meant to be encouraging. He’s really not all that bright; he doesn’t get “chronic”. I was polite, but once I got back into the house I was ready to rant. Don’t tell chronically ill people that they can “get well” if they just change their diet, get more exercise, meditate, get off gluten, take vitamins, or whatever else occurs to you. It’s almost like suggesting that it is their fault that they are sick. I know that while it is human nature to want people to “get well”; it is insensitive to suggest that this is within the power of the person who is dealing with a disabling, progressive and incurable disease.

On the other hand, I need to pick a drug. Once I calmed down I e-mailed the doctor to let him know that CellCept sounded pretty good. Some scleroderma patients in forums are claiming to be in remission. That sounds pretty good to me. The downside? No more sunshine for me until I’m off again.

Midnight gardening? I can do it!!

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. 🙂