The Scleroderma Chronicles: Invisible (Star) Wars

I’m a big fan of the movie Star Wars. Seriously. I remember the first time that I saw this movie; we stood in line for hours, laughed at the droids, were amazed by the special effects, wished we had the Force, held our breath as the tension at the end of the movie mounted, and cheered wildly when the Death Star blew up. Over the next year we watched the movie 13 times in the theater, memorized the sound tract, and to this day I hear snippets of dialogue echoing in my mind…

Star WarsLike this line said by the droid C-3PO to his buddy R2-D2 as they escaped from their badly damaged and captured ship to carry out a secret mission as directed by Princess Leia:  “That’s funny, the damage doesn’t look that bad from out here.”

Author
Bundled up in wool and staying warm. You can’t see my stage 3 kidney disease, interstitial lung disease, struggling gastric and intestinal organs, burning muscles, painful joints, brain fog, and my truly astonishing fatigue.

That’s me. Badly damaged on the inside, not that bad on the outside.  The curse of all people who have an invisible illness. People often say, when they learn about my illness, something along the lines of… “Well, you look great!” It’s nice to hear, but it also suggests that I’m not really that sick.  I can’t help but feel that they think that I am an attention-seeking hypochondriac. Sigh.

Raynaud's
You have to admit, the visible symptoms are really subtle. It can be as little as lost circulation in a finger: Raynaud’s phenomenon. What can’t be seen is that I’m also experiencing circulation loss in my lungs, kidneys, brain and other organs.
Edema on arm.
A poor dietary decision can hit me hard: dizziness, muscle pain and edema in my arms. I ate cheese enchiladas at my favorite restaurant this time.

It is amazing, really. How can the damage not look that bad from out here? I struggle for air. I often lack the energy to get through basic tasks. Pain stalks me waiting for a poor decision on my part that will give it an opening.  An incoming weather front pushes me over a cliff. Holidays can be the worst as I struggle to manage my energy resources, diet and exposure to cold. I can get through the Christmas dinner okay, but the next two days are spent in bed sleeping myself back to functionality.

And yet, I’m starting the New Year feeling pretty darn chipper, well… as chipper as you can after a 12 hour nap and a strong latte to launch myself into motion. See, I can get back to functionality. I’m on great drugs and I have wonderful doctors. My latest round of medical testing shows that I am tolerating my drugs well, and my disease progression has virtually ground to a halt. I am making some gains. I spend a lot of time managing my symptoms and hoarding energy resources, but I am not getting worse. Some really scary words on my chart have gone away over the last year: chronic respiratory failure, pulmonary arterial hypertension, and severe kidney disease are no longer there. I have wonderful friends and supportive family members. I am still independent and can get out to social events.

MacKenzie the cat.
I have the world’s bossiest cat to tend to me…
Rose.
and my indoor roses are blooming.

The rose bush is also struggling and covered with mildew. Sigh. It’s like a metaphor for my life. Bloom where you can, and pretend that all this other damage isn’t happening over there… Jedi mind tricks can be useful when dealing with implacable enemies like scleroderma and mildew.

Use the Force! I hear in my mind. If you know the movie Star Wars and the other movies in the series, it is a tale of heroic underdogs battling against great and evil foes, desperate times, hope and change.

I don’t have a light saber, but I have knitting needles.

I don’t have the Force (an invisible energy field created by all living things), but I have an online and real network of people and other living things that connect to me and support me. I have science and time on my side: new drugs are on the way and some of them are in new rounds of clinical trials. Remember the movie poster? A New Hope. Yep. Every year brings me a new edition of hope.

My illness is mostly invisible. The battle is real. Bring it on, 2019, I am ready for you!

Cat

Footnote: Perhaps you are wondering… whatever does she have? I was diagnosed with Limited Systemic Sclerosis and Sjogren’s Syndrome in 2014, and those two conditions carry with them a host of complicating conditions such as Raynaud’s, colitis, gastroparesis, interstitial lung disease, kidney disease, heart disease, oh my lord, and a partridge in a pear tree. In 2016 I was referred to palliative care and told to make final plans; Myfortic (CellCept) saved the day and I was discharged from palliative care a few months later. In 2018 my rheumatologist added fibromyalgia to the list and there is an ongoing discussion about dermatomyositis. Why do these autoimmune diseases throw parties and invite all of their friends?  It’s like the bar at Mos Eisley Spaceport with all the strange aliens.  As Obi-Wan tells Luke, “You will never find a more wretched hive of scum and villainy. We must be cautious.” I don’t have a blaster, but I think that in this case the drug Myfortic will do the job!

All the Christmas Knitworthies

I’m an addict. Seriously, I need to belong to a support group… oops… that’s literally what my Wednesday morning group meeting is, only those guys support me to buy more yarn, tools, patterns, cookies… Anyway, my name is Midnight Knitter, and I am addicted to knitting. The gateway drug was crochet, but once I got my hands on knitting needles I was gone. I was only eight years old, but the path of my life was already determined; yarn and I would be best buds forever. These days I spin it, dye it, weave it, but mostly I knit with yarn. A lot. A day without knitting is an ugly thing…

Here’s the central truth of my knitting; I will knit many, many sweaters, mitts, dishcloths, and other items of use, but I do hate to part with anything if it isn’t going to a good home. You know, the chunk of knitted love should go to someone who will appreciate it, use it, and maybe even love it a little too. In a word, a person who is knitworthy. Someone who will thank me for the gift. Someone who will give that knitted piece of me a good home. Someone who will take the time to thank me and let me know that they will use their hand knit.

I knitted a lot of Christmas gifts this year. Superwash merino, cashmere, silk and even yak slipped through my fingers, looped over the needles, and grew into fabric that I hoped would bring joy to the person I was creating it for. As Christmas approached the items were wrapped with care, stuffed into boxes, and mailed off to recipients. Little pieces of me, winging off to Christmas trees far away, waiting for Christmas morning to arrive.

Today the first happy picture arrived on my phone. Such a great picture! My whole day was made. Knitworthy!! I asked everyone else for a pic of their presents, and by this evening they had arrived. Look!!

Cousins in knitted goods.
My cousins in snowy southwest Colorado sent the first picture. I was so relieved and happy to see how nice the cowls and hat looked. The cowls are Clinkerbell Cowls by Casapinka, and the purple hat is a Sockhead Slouch Hat by Kelly McClure. Project notes for the cowls are here and here, and if you really want to see some notes on the hat, they are here.
Sister ready for winter.
Then my sister in Oregon sent the happiest picture ever showing off her fingerless mitts and another Sockhead hat. This is her first winter in a colder climate, and those mitts (made of superwash merino, silk, and yak) are already getting a lot of use. The project notes for the mitts have the pattern included.
Daughter-in-law in her cowl.
This evening the picture of the brioche cowl that I made for my daughter-in-law arrived. Her cowl had already been worn for an outing this afternoon, and she told me it was really cushy and warm. The pattern is Purl Soho’s Gina’s Brioche Cowl. Here are my project notes.

Everything fits. Everyone was happy with their gifts, and I’m completely assured that they will put the knitted pieces of love to work. Yay. But wait, there is more. I knitted for the cats this year, too!

Cat and mouse.
My grandkitty Maya attacked her Portly Mouse as soon as I gave it to her. Must have been the catnip.
Cat and mouse.
My other grandkitty Daxter went to sleep with his.

My son reports that the cats have been flinging the mice around his apartment and that they are being well used. Excellent. Even the cats are knitworthy in this family.

See, we knitters (well, those of us who are addicts like myself…) are actually pretty simple. Send us a happy picture and a nice “thank you” and we have gotten our fix and will now produce knitted goods forever.

Because you are knitworthy!

I hope that you all had a wonderful holiday and that the winter will be kind to you.

MacKenzie Speaks: The Christmas Knitting Frenzy Continues…

Hi. I’m MacKenzie.

Cat wearing antlers.
Do you see what the Mother of Cats put on me?

Things have just gotten out of control here. The Mother of Cats has been knitting night and day for way too long here. She keeps rushing off to the yarn stash for more yarn (I always help her with that!), printing more patterns off the computer, and casting on new projects. I’ve tried and tried to slow her down, demanded cookies, petting breaks, and trips outside, but she just goes right back to the knitting as soon as I wander off for a nap. I chomp yarn and dragged one project off to hide under the Christmas tree, but she continues to persist. She is determined to knit herself a little Christmas this year.

Christmas Gnome
I asked her to fill this one with catnip, but nope. She put it on the mantel where I can’t reach it. Why is the Mother of Cats so mean to me?

So far she has knitted 4 cowls, 2 hats, 2 shawls, a pair of fingerless mitts and this cute little Gnome that she WON’T LET ME PLAY WITH. Almost everything that she knitted has been mailed away, but the gnome is still here. I haven’t quite figured out how to get my claws into it, but I’m still plotting…

Sigh. Is it Christmas yet? I’m being neglected something awful.

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

I am so happy with the gnome and can’t wait to make another one. The pattern is Here We Gnome Again by Sarah Schira. So addictive. The pattern is linked to instructional videos that show you how to do the twisted cables without a cable needle; after a few minutes on YouTube I was doing them like a pro. Here is my project page on Ravelry.

Gnome details.
The cables are what makes the pattern so special. This is the hat; don’t my stitches look great? The great support with the pattern made that happen. 🙂

I’m knitting the last cowl (a brioche baby that is taking me forever!) and shawl now. I think I’ll make it. Sure, I can get this done. No problem. Move along. Nothing to see here…

This evening I downloaded another pattern: chubby mice that will be catnip stuffed toys for MacKenzie and the other kitties in the family. I can polish off some little mice. How long can they take? I just added catnip to me shopping list.

Christmas is for cats, too.

Happy Holidays everyone!

Knitworthy

It began with a wail (really, you can wail by text…) from my niece in California… MY MITTS ARE HURT!! The wailing continued in the following texts… How could this have happened? I took such good care of them! Suddenly they are falling apart! If I send them to you, can you fix them?

I literally save the leftover yarn from all of my projects just for moments like this one, and I knew that I had the yarn from these mitts, so I said to send them to me and I would see what I could do.

Mitts on magazine cover.
While waiting for the mitts to arrive I hunted down the pattern. They are the Latvian Fingerless Mitts shown on the cover of this magazine (Knitting Traditions, Winter 2011), and they are just beautiful. Just look at that pattern! My niece asked me to make them as soon as the magazine came out, and a few weeks later I sent them to her.

Did you notice the date on the magazine cover? Those mitts were made 8 years ago. Oops. I think that I know what went wrong…

Worn mitts.
Even the most lovingly cared for mitts will eventually wear out. The breaks and worn fibers were right along the edging and thumb where they rubbed against the steering wheel of the car.  Poor babies… nothing is forever.
Dead mitt.
No question about it. The repair job on these mitts would be horrendous. I let her know that they were toast.

Here’s the deal with the mitts. The day that she received them from me she sent back a happy picture of her wearing them with a huge smile on her face. She showed them off on Facebook. She made them the cover picture of her Facebook page. She thanked me again and again over the years as  she continued to wear and enjoy them.

Never, ever, was there a person more knitworthy than my niece!

I told her I would make her some new mitts.

My niece began to send me pictures of wildly intricate and fiddly mitts for me to consider knitting for her. Lots of color, braids, ruffles, bobbles and stranded features. Mitts that a unicorn would be ecstatic to receive. My heart sank. I’m drowning in knitting, and I have also been contacted by another couple of people asking me to spin/knit for them. It is Christmas. I want to go back to knitting some of my projects that were bumped for the holidays. I don’t want to buy more yarn…

Monet Again mitts.
But when this came I was hooked. Hummm… where is this pattern? What do I have in the yarn stash? I must make these!! I must!!

Curse you Pinterest! There is no way I can walk away from the fabulous mitt project now when faced with this!  All objections were abandoned and I committed wholeheartedly to knitting “mitts to die for”.  My niece and I began to track down the pattern and worked in tandem until we had it. These mitts are the project of the Ravelry user Susanmarie, and here is her project page for the mitts. She based the mitts on a sock pattern produced by Blue Moon Fiber Arts called Sauvie Island.  Luckily for me Susanmarie kept fabulous notes on her design, so I’m in pretty good shape as I attempt to make these mitts for my niece, but I needed to hunt down the original sock pattern.  We soon discovered that the pattern was included in a booklet produced by Blue Moon that is now out of print, but more intrepid investigations led us to a PDF version that could be purchased. I bought the sock booklet and my niece will reimburse me. We were in business. Time to stash dive for the yarn!!

Yarn
Check out this color wildness!
Greyscale of yarn.
I wanted to make sure that there would be good contrast between the two yarns to support the stranded colorwork. Yep. This should work!`

A unicorn would cry tears of joy to have mitts made with this yarn. Okay, my niece is not a unicorn, but she has been known to flash hair in some of these bright colors; the colors and the mitt design are screaming her name. I bumped her mitts to the top of the project queue. As soon as the essential Christmas knitting is out of the way I’ll be casting on…

What will happen to the worn out mitts? I have to send them back to my niece because she wants to FRAME THEM!

Never, ever, was there a person more knitworthy than my niece!

MacKenzie Speaks: The Christmas Knitting Frenzy has Commenced!

Hi I’m MacKenzie.

Cat and knitting.
Do you see what is draped across me?

This year the Mother of Cats began to panic really early. She began digging through the yarn stash and tossing skeins of yarn through the air before we had even made it to Turkey Day. (Turkey. I love turkey!! Every year I get to chow down on all the turkey that I can eat, so I remember this!) “Must knit this year, must knit this year,” she kept muttering. Really strange, Mother of Cats. More strange than usual.

Must have something to do with the new furnace that I didn’t get to play with while the worker-men were busy in the crawl space under the house. This is how mean the Mother of Cats is… SHE LOCKED ME INTO A BEDROOM!!! while the furnace was being installed. I love playing in the crawl space. Why is the Mother of Cats so mean to me?

Anyway, now we have a new furnace, and the Mother of Cats has turned into a knitting machine. She is completely out of control. She is neglecting me. She has more projects started than she can count. There are bins of yarn all over the downstairs work room. She made a spreadsheet to figure out her knitted Christmas presents.

Yarn and cat.
Do you see how out of control she is?

Some of her presents are hidden away and can’t be shown off yet, but here are the ones that she will let me show off because a couple of them will go into the mail tomorrow.

Mitts
These are little mitts for her sister who just moved to a colder climate. Do you like that yarn? It is yak, silk and wool, and is really yummy for chomping…
Sockhead Hat.
This hat matches the mitts. The sister of the Mother of Cats has never lived in a place with snow before, so this hat should keep her ears dry. The sister should try walking in snow with cat feet!
Close to You shawl,
This little shawl is being knitted in Christmas colors for the Mother of Cats to wear to her book club next week. Knit faster, Mother of Cats! Book club is next Thursday. Have you started your book yet?

All of this crazy knitting, and I am sad to tell you that the Mother of Cats has not put the pumpkins away yet, and the Christmas tree is still in the CRAWL SPACE. I would be happy to go down there to find it for her, but no, does the Mother of Cats ever let me do anything that is fun? No. She does not! I want the tree. Best cat toy ever!

Happy cat.
Except let me eat turkey. She did let me have more of that tonight.

Tonight we are going to work on that shawl some more and maybe cast on another couple of projects. The Mother of Cats seems to think that if she starts knitting something it is like it is already done. Silly Mother of Cats!

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

  • The project notes and the pattern that I used for the mitts are on my Ravelry Project page.
  • The Hat is the Sockhead Slouch hat. Wow. This is the first time that I have made this, and I am struck with the need to have one for myself. I need to do some more stash shopping to find a yarn for myself that is a soft as the one I used for my sister. Project notes are here.
  • My sister just relocated from the San Diego area to Oregon. It’s not really an extreme winter there, but I think that she will have to deal with below freezing temperatures and some nasty weather, so the hat and mitts are flying west to here tomorrow.
  • The shawl is Close to You. Hey, this pattern is free, easy to knit, and really nice to wear. My project notes are here.
  • I have 5 more WIPs going at the moment. Slowly, but surely, the pile of finished Christmas knitting is growing…
  • October was pretty darn expensive for me. I put the license plates onto my new car, had the cedar fence replaced, and then bought a new furnace. The good news is that I don’t have to worry about my car break breaking down, or the fence blowing over, or the furnace failing. Peace of mind comes at a cost, but is nice all the same. I hope that everyone loves their homemade presents!
  • The book that I need to finish in the next few days is The Nest by  Cynthia D’Aprix Sweeney. I’ll let you all know what I think about it. I have been reading a lot, and when I take a break from the knitting I should tell you all about them. I’ve really been scoring some good reads lately.

Indoor Roses

It’s been a long time since I’ve talked about the garden. Over the last couple of years, forced indoors because of my scleroderma, I have had to settle for some potted plants out on the back porch. My favorites among these plants have been surviving in the garage during cold snaps and snowstorms, but we have finally reached a point where the cold is too prolonged for that strategy to work any longer. Time for them to come indoors! I gave them all a little spray of neem oil to kill hitchhiking pests, dragged them inside, and put them near windows. Obviously that wouldn’t be enough light for the little rose bushes. You know, the kind that you buy at the grocery store when you meant to just buy bread, milk, and ice cream. I have several pots of those roses and those babies were growing in bright sunshine all summer! Last week I headed on over to my favorite garden center to see what I could do to help my floral buddies survive over the winter in the house.

Light on roses.
I found a nice little grow light and a stand that, with a little ingenuity, can provide lights for the roses on my bedroom dresser. 

While I was unpacking the grow light and putting it into the stand I noticed that the light fixture itself was designed to also be attached below ceilings, shelves, cupboards, or some other solid feature. There are two little metal brackets and two screws involved. Hey, this is something I can do. I have more plants needing light! I headed back to the garden center.

Grow light on shelf.
I have a cheap set of wooden shelves in my sewing room for plants. Behold! Lights for my orchids! That pink flowering plant has a scent, and the blooms make me happy. My sewing room is really inviting now.

I’m pleased with how the plants are managing with the new light, but there is an obvious readjustment going on with the little mini-roses. They are undergoing a transition with their leaves…

Yellow rose leaf.
All of the summer leaves that grew in full sunshine are turning yellow and dropping off. Seriously. ALL of the leaves.
New growth on the rose bush.
New growth is bursting out all over the stems following the dropping of the summer leaves. Crazy, huh. I am pulling off yellow leaves and pruning almost every day as the rose plants go through this process. 
Rose buds.
The new leaves look healthy and glossy, and the buds are continuing to develop just fine.
Rose blooms.
The plants are even managing to bloom while they are adjusting to the new lights.

I’m pruning the little bushes down to a lower height as they finish up with the last of the summer blooms and the old leaves drop off. There is so much new growth on the stems I’m pretty sure they are going to be fine.

It looks like I’m in business. Winter roses. I may not be able to get outside all that much now, but with the new full spectrum grow lights and the indoor roses it’s like I’ve brought the garden indoors.

Once again, I am knitting in my garden surrounded by my roses.

Take that, scleroderma!

MacKenzie Speaks: Zweig Alert! It is done at last.

Hi. I’m MacKenzie.

Cat and sweater
Do you see what is flopped on top of me? It is the finished Zweig!!

That’s right. The Zweig is finished at last. The Mother of Cats stayed in bed all Thursday with me knitting away on it while listening to a book for her evening book club event, when suddenly, it was done! After hours of being forced to stay off the sweater it was suddenly a nice little blanket for me. Good job, Mother of Cats!

Oh, no. The Mother of Cats was just messing with me. Why doesn’t she take my needs more seriously?  Within minutes of binding off the last sleeve she had dumped the whole mess of yarn into a sink and covered it with water. Why does she do these things?

Cat helping block a sweater.
Okay, I must admit that I do like wet wool.
Cat on sweater
Forget that. I LOVE the smell of wet wool. It’s curiously soothing…

I had just started to paw the wet sweater into a nice cushy bed for myself when the Mother of Cats freaked out, shrieked, and chased me off. She covered my sweater with another layer of towels after that to let it dry overnight. I slept on top of the towels for awhile with a couple of my toys, but it just wasn’t the same.

Today she moved it to a screen to dry some more, and this afternoon, still damp and with strings hanging off of it,  she took it out for a picture. Did she let me play with the strings? Did she let me go outside with her? NO! SHE DID NOT! I do not understand why I am being neglected this way.

Zweig hanging in tree.
It looks pretty good out there, doesn’t it?

The Mother of Cats is kind of moping around now that the sweater and her book is done; maybe she needs some catnip.  I’m finally getting more attention and cookies, but last night she began to dig through the yarn stash and organizing stuff into bins labeled “Christmas Knitting” and “Fingerless Mitts”. I helped her with that as much as I could and even got some red yarn rolled under the guest bed. I’m such a good helper! I’m pretty sure that she will be busy on new projects, but right now I’m getting more attention. As I should.

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

  • This sweater was cast on the last day of summer, and I am so pleased to report that it is done just in time for cold, blustery weather coming in next week.
  • The sweater is Zweig by Caitlin Hunter. I knitted it in two cashmere blend yarns that were just a joy to work with. The blue even has some silk in it! I was torn about what color to combine with the blue but eventually settled on the gold as it made the blue come alive best.
  • Yarn
    Here the yarns are when I made the final decision for the sweater. 
  • You can find my project notes on Ravelry here.
  • Last night I returned to a shawl that had been neglected for a months. Soon after casting on I had decided I didn’t like it very much; now I can’t wait to get it done and to cast on another. My head is swimming with different color combinations for more shawls. Maybe some for Christmas?
  • Oh, yeah. Christmas gift knitting. Maybe it is time to get going on that. I usually start panic knitting after Thanksgiving, but why not start the panic a little earlier this year? Let’s see… I have a cowl to do, several hand warmers, some stars and candle covers, towels to weave and dishcloths to make, quilting that was put off from last year, and…
  • TIME TO PANIC KNIT!!!