systemic sclerosis – Page 11 – Yarn, Books & Roses

Bolt from the Blue: The Encouraging Thunder Award

A couple weeks ago I woke up to a shock in the email box: That Girl at (Not) Another Lupus Blog nominated me for the Encouraging Thunder award, which is meant to recognize blogs that are inspiring and encouraging to their readers. Say, what? I have to say that of the many blogs and comments out there, one of the best, funniest, and uplifting to me is the one that That Girl writes. She is dealing with serious autoimmune diseases that continually derail her life, and she makes me laugh out loud while she relates the latest adventure/disaster. Check out this post about a particularly bad time waiting for her meds to arrive in the mail and you’ll see what I mean. Her blog empowers me to face down whatever may come my way and to deal with my health adventures with grace and humor. She does inspire me. She makes me laugh. She says nice things about my knitting. If ever there was a person who is encouraging, it is her.

encouraging-thunder-award

I am stunned that she passed the award on to me too. Wow. She is a tough act to follow. It is also kind of weird to think that somehow, typing out into the void about my life with cats, yarn and scleroderma, things that I think about and create connect with other people. Thank you That Girl for thinking of me. It’s an honor to accept and pass the torch (thunderbolt) on to others.

So, this is how the award works: I am supposed to talk about why I blog. That Girl used the opportunity in her post to re-examine her purpose in blogging. Here is her wonderful and reflective post. As I read her thoughts it pushed me into some reflection of my own. There has been a lot of water under the bridge since the start of the blog, and I guess as I changed over time I didn’t really think about this too much.

Here’s the deal: I started to blog because I was going through a tough time and I was isolated. My family was in crisis. I had just retired from the best job in the whole world and was in grief over the loss of my biology classroom. The transition was especially hard since I was going from an adrenalin-charged, immensely creative and social day (hello: 150 high school kiddos a day! Did I mention that it was a lab class…) to one at home with yarn and the cats. I was already sick but not yet diagnosed; it was hard to know if the disconnected symptoms, fatigue, and pain were real or me just feeling sorry for myself. I began to pour my creative energies into knitting and writing; I started the blog to put my transition into retirement out into the digital world; maybe there would be some people who shared my interests. Then the diagnosis of systemic sclerosis (and Sjogren’s) came in and I decided to share some of that. What a wonderful idea it was. Now people reach back to me and make me stronger. Thank you to everyone who has read this far down the post. You are the reason why I blog. You make me more creative (and brave) as you share your crafting adventures, your cats/dogs, your gardens, disasters, and medical adventures.

Thank you again That Girl. You made me think about all of this and I think that I’m ready to blog on!

And now it’s time for to pay it forward. Here are some bloggers who given me inspiration and encouraged me to knit on no matter what.

Sharon at Creativity and Family. This woman is the motherlode of creative inspiration. I don’t think that there is a craft she doesn’t take on. She has a button collection!! There are yummy recipes on occasion, and her kids seem amazing. They have monthly presents. Oh, yeah, she also has lupus and some physical limitations but you have to be very alert to pick up on this because she absolutely refuses to let it define her. She is kind of my hero! Check her out.
Phil at The Twisted Yarn. OK, I’m just going to come out and say it: she totally intimidates me. She has such a fun and unique voice. She takes us to all things yarn and on trips through the countryside with the toddler twinage. She creates amazing projects that I never would have thought of like a Mandala and a knitted pigeon. Reading her posts made me think about my “voice”, but in the presence of quirky greatness it is best to not try to compete.
Lisa at Comfortable in Thick Skin. What can I say? She is a scleroderma warrior. She makes me think that I should be more brave and proactive with everything in my life.
Gaye at Confessions of a YarnHo. She just moved the blog into a new home that is a beautiful professional site. She loves yarn, she is full of joy, she will make your day. The end of every post is “Knit on my fiber friends… knit on” How encouraging can you be.

If I nominated you and you choose to accept, here are the fiddly rules:

When you get this award, you can:

Post it and the logo on your blog
Pay it forward by nominating others

You cannot:

Abuse or misuse the logo
Claim the logo is your own

If you receive the award you should:

Give thanks via comments and likes in the blog of the person nominating you
Mention the person who nominated you in your award blog
Discuss your purpose in blogging in your award blog

That’s all folks. If you are reading this That Girl, thanks for the award, and thanks even more for your presence in my blogging life.

The Golden Hour

It’s here! It’s here! The most wonderful time of the autoimmune disease year. Fall colors, cooler (but not cold) temperatures, sunshine levels that won’t make me sick, pumpkin spice lattes at Starbucks, and wood smoke. Pumpkins and autumn squash soup. New yarns at the yarn store and patterns for warm sweaters. Ugg boots!! Without fail I have a surge of joy and energy at this time of year. Just like the golden hour in photography, that time in the evening when everything is softened and has a glow of light to it, this is my golden hour of the year.

Sunset — Look at this sunset! I took the picture while sitting at the stoplight. Doesn’t it make you happy? The golden hour is the hour before this as the sun was just dipping down towards the mountains in the west. Here is Colorado it makes the Rocky Mountains look softer and plush; there are sunbeams and everything looks wonderful.

What’s wrong with the rest of the year you ask? Well, let me tell you: winter is a beautiful time of year, but for a person with systemic sclerosis and Raynaud’s disease, it is a miserable battle to keep extremities warm an opportunity to rock the wool socks, shawls and fingerless mitts. This year I plan to roll out some exceptionally warm longish sweaters; I have the yarn all ready to go. I have patterns for fingerless mitts that will go up to my elbows. I bought fleece Cuddle Duds. I am really going to try to handle the cold better this year; last year I rolled out of winter with more severe symptoms than I had in the fall.

Spring is a time of gardening, hope and struggle for me as I try to get the garden’s flowers (and roses!!) going while slowly accepting that new debilitating symptoms that I thought were related to the war against cold, but which remained in the balmy days of April and May, were actually real things. Darn! No wool sock or hand warmer will fix my problems… by the time I make appointments or call for help it is already summer.

Ugh! Summer! I was a teacher, and summer was that wonderful time of renewal and rebuilding that kept me going year after year. Now summers are so fraught that they seem to pass in a blur of lawn watering and visits to Kaiser. Really, I am just a mess all summer long. Here’s the highlights of this year:

Summer started with me just a few weeks into the drug methotrexate (which I got after making a call for help in early May…) I was losing hair and taking it easy two days a week because of the drug’s side effects. Still, by juggling the drug schedule I was able to work a summer camp teaching kids how to spin and felt fiber. So fun. The camp was only 2.5 hours a day so it was perfect.
In July I developed rare bone complications from the drug (well, don’t I feel special!) and ended up at an acute diagnostic facility. That was the end of the methotrexate.
Icky symptoms reappeared with a vengeance. I had to wait a few weeks before I could start the new drug. It’s called purgatory drug holiday .
UTI strikes. Seriously!! Antibiotics, barfing and yogurt happened.
Rheumatology appointment: he starts me on CellCept with some reservations about whether my gut (which basically hates me…) can handle it.
I start the pills. Woohoo! No problems except after two days…
…UTI strikes again. Oops! I stopped the CellCept, gobbled antibiotics and yogurt, and skipped the barfing. Take that you ill-behaved gut!!
Started CellCept again the next week. Hello heartburn, my old friend. Middle of the night vomiting and belly pain? Nope, nope, nope. My gut has definitely vetoed this drug! I didn’t even make it a week before I emailed my rheumatologist to ask for something else from the land of pharmacological wonders.
Well, what do you know. There is another version of the CellCept that is a time release version that I should be able to stomach (see what I did there?). My rheumatologist and I had an email chat and he ordered it up for me.
…and the insurance declined to approve it. What?!! I wanted to send my gut on over to have a chat with them. Two visits to the pharmacy, two phone calls and an invocation of the gastroenterologist did the trick. I scored the pills on the last Friday in September. Yep. That was the end of summer and it is now time for the golden hour.

I started the time-released version of CellCept 10 days ago. You know, I think that I feel better already. My knees have stopped hurting! I seem to have more energy. I think that there is less edema in my arms. I have started cleaning out cupboards and stuff. I am happy.

Maple leaves — Look at these leaves! This is the maple tree in my back yard.

This is my year of systemic sclerosis (scleroderma): cold, pain, hope, struggle, persistence, and wonder. And this, my friends, is the best part of the whole dang year. I am full of joy with every red leaf and pumpkin that I see. I know that the snow is coming, but what the heck.

Today, today I am in the golden hour.

First Week in September: Three Bowls, Three Mitts, and a Reyna Shawl

I am knitting and crafting like crazy. Actually I’m enjoying the balmy weather of summer’s end and I’m a little nuts because I just can’t seem to get everything done. The flowers on my deck are at their best. The crickets are chirping. The temperature outside is just about perfect and I am spending my time clicking knitting needles and feeling a little less than my normal cheerful self (more about that below). Still I am making progress and the setting is just about perfect. This afternoon I decided to set up the laptop on my backyard deck and let you all know what I’ve been up to. Here it is.

My sister’s birthday was the 5th of September. I bought her a card a couple of weeks ago and I sat down and got these bowls done in plenty of time to send to her. Here the are!

Fabric bowls — A set of fabric bowls. Bet she never saw this coming! She does sew a lot and I thought that she might find these useful in her crafting area or maybe on her desk. I found the pattern online at Quilter in Motion.

Fabric Bowl — I just love the fabric! This is a Laurel Burch pattern that I found last year.

I still haven’t mailed them off to my sister. They are now days overdue but I do have an excuse (OK, it’s pathetic, but still… It’s my excuse and I’m sticking to it!). My rheumatologist started me on a new medication for my systemic sclerosis (scleroderma) called CellCept, and it just doesn’t like me. Every part of my digestive system hurts!! Boo! Today I got up and decided that I am done with heartburn (not to mention middle of the night barfing) and e-mailed my doc to ask for something else from the land of pharmacological wonders. This morning I didn’t take my pill and this afternoon I plan to make the trip to the post office. Hang on sis! They really are coming…

Now the knitting makes sense, doesn’t it. No matter how upset my digestive system is I still manage to eat (yogurt is my friend) and knit. Lots of knitting has been going on. I dug in this last week and worked like crazy on the mitts that I am designing for Alta Vida Alpacas for Alpaca Farm Days which happens later on this month. They plan to sell kits of yarn with the pattern to visitors to the farm. I’ve been trying to make simple patterns that show off the yarn. Here’s what I’ve come up with:

Mitts — This yarn is sportweight, 50% cotton (which gives it some slubs and texture), 25% wool and 25% alpaca (yum!). The yarn knits up great, feels light on your hands but is also soft, comfy and warm. I wanted them to look easy to knit (hello… trying to sell some kits here!!) but appealing. Please lay on the feedback people!

Like those colors? This is Colorado (AKA Broncos Country) and the football season starts this coming week. Yeah Broncos!! The thumb on the stripped mitt is a little different from the usual shape that I favor and I’m still thinking of knitting a stripped version with slower increases. The thumb on the solid mitts is more like what I like to knit and wear. It fits your hand with no pull across the hand and the ribbing on the top of the thumb is loose enough to allow you to wear the mitts over gloves. (Reynaud’s makes you think about things like that!) Be honest here: does that stripped thumb look goofy? Should I change it?

So the knitting continues. I want to make the mate for the beaded mitt before the end of the week, and then will do a pair of stripped mitts with a more gradual thumb increase in blue and off-white. Next I have to write the patterns, but I’ve kept lots (and lots!) of notes while I knitted so I am feeling pretty positive about that next step.

Finally, I’m making some steady progress on the only knitting project that is just for me. Check out the Reyna shawl that is finally getting towards the end of it’s knitting journey.

That’s the week. I’ve been reading a lot too, but I think that should wait for another post. And the flowers that I’ve got blooming on my deck are so fabulous they are crying for a post of their own…

Hope you all had a great week (and no barfing!!).

Happy Knitting: August Socks and Yummy Shawl

I am on drug holiday from methotrexate (the drug that was given to me to treat my systemic sclerosis) right now and I feel great. I have energy, my joints and muscles are happy, and there isn’t even a hint of dizziness. OK, my ribs are still sore and I have to be careful moving around, but still… Wow! It’s been more than a year since I’ve felt this good. It is now obvious that, even though there were side effects and some of them forced me to quit methotrexate, it was working. My goodness it made a difference. I am gardening, cleaning house, cooking up a storm, and rocking the knitting. Happy, happy, happy.

In the middle of upbeat gardening yesterday I remember that it is also August. Time to cast on the New Year Resolution socks for the month. I dug through the sock books again, found a happy looking pattern and hit the yarn stash to search for a cheerful yarn dyed with long color sequences. Here’s what I came up with. Say hello to the August Socks:

Isn’t this the happiest yarn you have seen all week? Agave Fingering by Becoming Art Yarn in the colorway “Cherry Tart”.

As much as I like the seafoam stitch I think that I won’t continue it down the top of the foot of the sock. I will be wearing these socks inside of shoes all winter and I’m wanting the socks to be really warm and long wearing. If the colors pool badly in the foot it won’t matter that much to me at that point. With cute tops like these, nothing can happen in the foot that will spoil things. 🙂

When I dug through the stash I also found this yarn that I bought on a whim but still hadn’t knitted up because it is really busy in the colors. I’ve been waiting for the right pattern.

Solution: Reyna Shawl by Noora Naivola. The pattern has a lot of garter stitch and sections of mesh lace that should highlight and then breakup some of the colors in the yarn. The edging and center stitch is a little different to me, but it is nice to learn new things, right? Further down the shawl there will be a lot more lace and the yarn will look different. I can’t wait to see what happens when I get to that part of the project. Here are my notes on Ravelry.

These two projects have kept me pretty busy but I have also been out in the garden. I sewed on the garden chair a little more and started attaching the sides to the frame. It is stretching out just right but the midpoint is refusing to slide on the frame; it still hasn’t expanded to the correct proportion. I soaked the stiff area with the hose this afternoon and left it to think about what it was doing for awhile. Let’s hope that does the trick as I’m afraid to tug on it too hard because my ribs are still sore.

I’m on drug holiday until I see the rheumatologist on the 20th. Let’s hope that I stay symptom free until then because I am totally focused on happy right now.

New Chinese Curse: May You Have An Interesting Disease

It has been two months since I started the drug methotrexate for my systemic sclerosis (scleroderma). I put off starting the drug for a few months as I was concerned about potential side effects (well, for one thing, it increases the chance that I will develop cancer. Since I’m now at high risk for lymphoma that kind of gave me some pause…), but struggling with fatigue and other annoying symptoms I finally made the call to my rheumatologist and started on the drug.

The first month was a little hard; nausea, headache, more fatigue, and what I called the dizzy-wobblies. My hair started falling out. By the second month, however, I began to notice that my muscles had stopped hurting. I had more energy. The edema in extremities was definitely much better. I was out of the house and doing much more. Hey, this is improvement. Go methotrexate! I was ready to make the pom-poms and sign up for the cheer squad.

Then more downsides began to emerge in the second month. I started to notice that my knees really hurt the day after I took the methotrexate pills. As always, I checked the Internet to see if anyone else had noticed this. Yep. It’s a thing. I decided to baby my knees a couple days a week and to keep on with the drug. Then my back started to hurt, I noticed a rash on my arms the same day that my knees hurt, and itching became a thing. My ribs started up with shooting pains. The pain spread to the entire right side of my lower ribs, I struggled to breathe and it was hard to raise my arm. Yikes!! The pain was so widespread it didn’t seem reasonable that it was just a cracked rib…

IV in arm. — Here I am with the IV tapped off so I could make the trip to the CAT Scan machine.

That’s how I ended up at the acute diagnostic center run by Kaiser for we after-hours folk that don’t want to go to the ER. (The ER has sick people. When you are on immuno-suppressants you avoid sick people like the plague!) The nurse was nice. The doctor was great. The words “possible blood clot in your lung” and “we want a CAT scan right away” were said. I would have been more upset if they hadn’t also just said “we’re giving you morphine to get this pain under control”. I would have hugged that nurse if I could lift my arm.

Then she blew it. As she stuck me with the needle to start the IV she said, “I once worked with someone who had scleroderma so I’ve heard of it before. Such an interesting disease. She did develop heart problems though, which was sad since she was so young.” Great. This is sort of like a Chinese curse: May you have an interesting disease. I grumped about her comment to my son who was there with me. “Well, you have to admit, it is kind of interesting,” he said.

Aside: It is an interesting disease. One of the great ironies of my life is that I have a degree in molecular biology and once worked in a rheumatology research lab on a scleroderma project. My boss Dr. Angeline Douvas and I at that time used the auto-antibodies from scleroderma patients to capture and identify the protein SCL-70 (topoisomerase). We spent a lot of time speculating about what was going on in these patient’s genes and why that was manifesting itself the way it was in their clinical symptoms. We were suspicious that it might be triggered by a virus. Here’s the paper: I’m the second author. Angie would find my diagnosis to be so interesting but she passed away in 2000 before I became sick. Yep, it is all so interesting. Anti-centromere antibodies! What the heck is going on here?! This is an important disease that should be researched not just for a cure to help people who have it, but to also gain essential understandings about cells and genes that can be used in the treatment of many other diseases. As it turns out there is a bill in congress right now concerning scleroderma and fibrosis research and you can contact your congressperson using this link.

Still, I found the nurse’s interested detachment from my personal situation to be somewhat appalling. Still in pain I was wheeled off for the CAT scan, and then waited for my chat with the doctor. NOT a blood clot. NOT my liver. They could see old breaks in my ribs (thank you osteopenia) but NOT a current one. It turned out that it was inflammation of the cartilage in my ribcage, a condition called costochondritis. It’s a scleroderma thing, just another bump in the road when you are dealing with a complex medical condition. Fabulous. The Internet tells me that it usually resolves within a year. OMG! A year??!!! That’s a lot of pain killers! Oh wait; that’s a lot of knitting! Best to look on the bright side.

The next morning my rheumatologist’s office called to let me know I should stop taking the methotrexate. Farewell, methotrexate. It was nice getting to know you but you didn’t play nice with my cartilage. I now have an appointment with my rheumatologist on the 20^th and he will discuss my new drug options with me then. I’m sad to let methotrexate go, but so glad that there are other drugs out there waiting for me to try them out.

Just another day in the life of an interesting disease.

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.