A couple of weeks ago I had trouble breathing, called my doctor’s office, and the nurse there called 911 for me. Wow. What an experience that was. Okay, it was a little surreal to be frank. One of the things that happened was the paramedic, after he had placed a needle in my arm vein, attached me to heart monitors and then placed me on oxygen, told me how much he liked my watercolor paintings of cats. What? This is really happening? Panting for air, I struggled for a moment to think of what he was talking about.
Those aren’t really watercolor paintings, but they sure do look like it, I suppose. They are actually art quilts made with handpainted fabrics that give them their “watercolor” look.
The patterns for the quilts came from McKenna Ryan and I bought them at a local quilt store years ago. Over months I slowly assembled the fabric stash to get the colors that I wanted, and then I created the quilts in my own colors to make them show cats that I have known and loved over my life. These three cats are Morgan (the yellow sunflower cat), Zach (the tuxedo cat) and Teak (my beloved Siamese cat). I love these quilts, especially because of the quality of the dyes on the fabric and the way the colors work together.
So, do you think that I am a sucker for handpainted yarn? Oh, my lord, that would be a huge YES!
The week after the exciting and exhausting ambulance ride my BKB (best knitting bud) Deb and I went up to the Interweave Yarn Fest to do some quality shopping.
Don’t those yarns look a lot like the colors that are in the quilts?
I saw these yarns and I was gone. I didn’t even do my usual pass through the entire yarn show before buying anything. I just started piling up the yarn that I wanted and that was that. I bought 11 skeins of fabulous, water-colorish yarns and wanted more. Let me show you what I got.
Here’s the thing. Looking at these yarns, I realized that they are the colors of the quilts. Watercolors. Colors that make me smile inside. The colors of sunshine, flowers in the garden, cats, and summer days. I look at these yarns, I imagine the projects that they will make shine, and I begin plotting the knitting. And the flowers that I will plant in the garden next month. And the people that I will gift the knitting to. Some projects that will last as long and give me (and hopefully others) as much joy as the watercolor quilts that I have on the wall.
The Mother of Cats finally finished her Mixology Shawl last week. I was so happy! She has been knitting and knitting on this for weeks and weeks, and it is so big that half of the time it was piled on top of me while she was working on it.
So, of course, as soon as she finished it I was thrilled. Another blanket for me!! The second she had that Mixology off of the needles and folded on the chair I jumped right up there. A blankie! My blankie! I don’t need it blocked at all and I love all of the strings hanging off of it. Thanks, Mother of Cats!! You’re much nicer than Yellow Boy says.
The Mother of Cats is so mean spirited. She took my blankie away and dumped it into the sink to soak. In water!
Then she stretched it out on the floor to dry with towels under and over it. How can she be so mean to me? She knows how much I like to sleep on wet wool. Wet towels, not so much. Sheesh…
It is done. She says it is not a blankie for me at all, but a new shawl for her to wear to her knitting group tomorrow. It is exactly the right colors to go nicely with my fur, but no, she hasn’t put it back onto the bed for me to sleep on.
Tonight she started another big shawl with lots of colors of yarn. We wound all of the balls this afternoon (cat party time!) and I helped her with the brioche stitches tonight. I’m sure that she couldn’t do this work without me. She is so lucky to have my help.
I have been working on this shawl for quite a while. I had some adventures settling on the colors for the shawl, which I shared in this post.
I do need to make the cats another knitted blanket. They actually fight over the one little one that I made for MacKenzie earlier. It is such a struggle to keep them off my knitted goods that I decided to just give them small blankets of their own that can be easily washed.
Tonight MacKenzie and I cast on a What The Fade?! shawl. Hopefully it will soon be big enough to cover him again while I’m knitting.
Today it was horribly windy here, so I stayed indoors. Here are some videos from the day; my favorite is the porta-potty blowing down the street…
It has been kind of a hard six months. I’ve been dealing with a serious flare of my Sjogren’s Syndrome: dry mouth, eye problems (retinal detachments in BOTH eyes), brain fog, and horrible fatigue. Seriously, off the chart fatigue. Bad Sjogren’s, bad!!
But I think that my systemic sclerosis (scleroderma) has been chugging along as well. My chest feels tight, and when I do anything at all I start to breath hard as I catch my breath. Okay, there might be some panting… Sometimes I get dizzy and I have to put my head down. Vacuuming is suddenly a horrific task, but just coming up the stairs or washing out a pan at the sink can also set me off. Sometimes my lips are blue…
One of the problems with being chronically ill is that you just keep taking things in stride. After all, it isn’t like this is the first time I’ve seen edema like this, or noticed that my lips were blue. I get out of breath all of the time, and I’ve been telling my doctors about all of this for the last 18 months. But somehow, things seem a little worse now. I have heart palpitations and there is a constant pressure in the middle of my chest. I have developed a headache that just refuses to go away, and my muscles and joints are behaving even worse than ever.
So, Friday while I was resting up in bed after the ordeal of making my morning coffee (yep. I go back to bed to recover from getting out of bed…) I decided that I would call the pulmonologist’s office to ask for an appointment. As usual, thinking that I would be on my feet for only a limited amount of time, I planned several little chores to do while I was going to be up.
Aren’t those the cutest armwarmers? I put them on, and then started the dishwasher, got a load of laundry going, and then pulled on some more warm clothes (ahem… my Cactus Flower socks and Marfa is a Black Elephant shawl over some fleece pants and a denim shirt) so I could sit at the computer downstairs to make the phone calls.
So, I was out of breath when I made the call. I got ahold of the nurse at my pulmonologist’s office to ask her if I should came in for testing right away or if it would be best to make an appointment. As I talked to her my breathing got worse… I just couldn’t catch my breath and I was now outright panting. I began to feel faint.
The nurse called 911.
I ended up sitting on the floor by the front door with the phone on speaker in front of me waiting for the paramedics to arrive. In just a few minutes they had bundled me up and were whisking me out the door leaving a visibly upset MacKenzie watching from the top of the stairs. It was snowing outside; I didn’t have a coat, but I had managed to hang onto all of my knitted items. The paramedics attached me to all of their sensors and then rebundled me in blankets and knitted items afterwards (okay, my hands turned blue. They hadn’t ever heard of Raynaud’s, but they becaume instant fans of wooly warmth when presented with fingers that matched my denim shirt…) My armwarmers were popped back on over the IV line and the oxygen sensor on my finger. They used the shawl as an additional blanket. I never got my breathing back under control, and was still panting up a storm when I got to the hospital, but I was better equipped than most to cope with the cold. I like to think that I was pretty darn fashionable, too.
Into the MRI machine I went, rocking my armwarmers, as once again the doctors went on a blood clot hunt. Every one of my health emergencies has involved blood clot hunts; it’s a scleroderma thing. No blood clot. No pneumonia. No heart attack. After 2 hours sitting on the gurney in the ER my breathing was under control again and my O2 was fine. My best friend Deb arrived with knitting in hand to sit with me. My son arrived in time to take me home again with instructions to not let me drive or stay home alone.
“This is something that needs to be treated by a specialist”, the ER doc tells me. “You need to call your pulmonologist’s office first thing in the morning to get in to see her. You need additional tests that can’t be done here in the ER”.
It’s hard to not be stuck by the irony of this. I’m back right to where I started. It is kind of known in the scleroderma community that going to the ER is mostly useless because they don’t have the knowledge and experience to treat your condition. I’ll be calling my pulmonologist first thing Monday morning, but this time I will be calling from bed in a well rested condition.
For those of you who don’t know all of the details of my autoimmune bad-boys, here’s what is going on:
I have the limited form of systemic sclerosis, which is a subset condition of scleroderma. I have thick skin on my lower arms, legs, face and neck mostly, but the damage is also affecting several of my organ systems. I am considered a classic case with all of the CREST components.
I also have Sjogren’s Syndrome, which is fairly common as about 15% of systemic sclerosis patients also acquire this sidekick condition along with the scleroderma. It’s serious in its own right, but not usually life threatening.
Systemic sclerosis has a whole basketful of complications: Raynaud’s Disease, interstitial lung disease, pulmonary arterial hypertension, and kidney disease along with the almost universal digestive tract complications. I have all of these, but in my case the words that are used to describe how I’m doing are “mild, early, and moderate”, which are nice descriptors to have if they are being used in the context of lung, heart, and kidney disease. I’m kind of guessing that one of the heart/lung conditions has taken it up a notch.
Today I’m camped out with my son waiting for Monday to arrive. I’m knitting.
Do you know the great Elizabeth Zimmerman? Her famous quote, one that I bear close to my heart on days like this, is: “Knit on, with confidence and hope, through all crisis.”
The Mother of Cats says that it is spring today. Spring! The birds are coming back! Yellow Boy and I really like birds. Squirrels, not so much. Birds are awesome, though. And bugs. And snakes. We really like to chase snakes!!
I tried to get the Mother of Cats to let me outside to look for birds this afternoon, but she refused to do it. Something about snow on the ground and too much wind. What a silly Mother of Cats! Doesn’t she understand that it is now spring?
Sunday night I drove home from a visit with my son through a thunder snow storm. If you don’t know about these things, they are pretty exciting. Lightening, thunder, and downpours of snow. So much snow. We had over 6 inches of the heavy slushy stuff before it was over. The cats were in the closet sheltering in place when I got home. Poor things.
The next door neighbors have a dog that has become a ferocious barker over the winter. She even ate a hole in the fence so she can keep a better eye on my yard. Poor cats. It’s going to be a difficult return to the great outdoors when the warm weather arrives.
The snakes are little garter snakes; mostly harmless, but surprisingly fast when a cat is hunting them.
My big brother MacKenzie has been a little under the weather this week, so I’ve been taking up the slack by being especially helpful to the Mother of Cats all week. While MacKenzie has been sleeping upstairs I’ve been helping her with all of her chores. I get lots of snacks and pets, too, since MacKenzie isn’t there to barge in…
Now that it is the end of winter I’m moving into prime shedding season. I love to sleep in the sunlight, and then as I run upstairs to check on MacKenzie the fluffs of fur just fly off everywhere. It’s almost like indoor snow! So cool! The Mother of Cats keeps brushing me, but thankfully she isn’t getting enough fur off to spoil my fun.
Anyway, since the weather has been warm this week we worked on finishing some little projects.
The Mother of Cats is so strange. I’m too hot and dumping off all of my long fur, but she keeps putting these things onto her arms and feet. Doesn’t she understand that winter is ending? She should come take a nap with me in the sunlight by the back door. Silly Mother of Cats!
That Mixology is so long now it covers me while she is knitting, so I really don’t like it all that much. I had to go upstairs to hang out with MacKenzie since she was so annoying while working on it. Every time she turns the knitting over it flaps over my head. She kept whapping me with the needles, too. No self respecting cat would put up with all of that. I decided that MacKenzie could use some attention, anyway, so I sleep with him when she’s knitting Mixology.
Today she took out that dreadful instrument of cat torture known as the VACUUM and chased us all over the house with it. It was just awful! Every time she turned it off to empty it I thought we were done, but no, she just reconnected everything and vacuumed another room. MacKenzie likes to follow her around to keep his eye on what she’s doing, but I hid. Best to be safe! When she came downstairs she caught me and carried me up the stairs past the scary machine and I just couldn’t help myself: I squeaked in terror! Can you blame me? The last time she carried me somewhere it was for a bath… MacKenzie laughed at me for an hour after that.
Notes from the Mother of Cats:
The socks are knit from a sock blank I bought at the Estes Park Wool Mart from Bonkers. The sock pattern is Eugene by Rachel Coopey. My project notes are here.
The arm warmers are the pattern that I worked out a few months ago when the cold weather started. I didn’t put in a thumb hole this time and the warmers just bunch up around my lower arms and wrists: just what I wanted this time. Here are the project notes.
MacKenzie had a cold for a few days: sneezing, cranky, and sleeping. Can cats have allergies? He’s back up to full speed again today and once again is the dominant cat; Yellow Boy has resumed his role of the little cat brother that MacKenzie alternately babies, grooms, and then roughs up. More yellow fur on the carpet…
Yellow Boy doesn’t know it, but he’s going to get a bath and clipping soon… Shedding season comes right before hair ball and matted fur season, and I hope to keep ahead of things this year.
I’ve been wanting to make a Mixology (by Casapinka) for quite a while. One night I printed out the pattern, shopped the stash, gathered up some yarn, and casted on with a sense of reckless abandon. Great yarns, great colors, and I couldn’t wait to see how it would look as I mixed them up in the shawl.
Okay, I have to be honest here; I just don’t do any swatching. Ever. I’m lazy. Maybe I need instant gratification. Anyway, I like to just throw the yarn onto my needles and launch into the project. Besides, how could these colors not work out?
I ripped it off the needles and recycled all of the yarn. I was pretty cheerful about it. I had just bought a few new items for my wardrobe in indigo blue and thought that I should build a Mixology that would go with them. Back into the stash I dived…
The shop sample was a lot smaller than mine. Like 6 inches smaller across then my knitting. Oh, oh. I was first drawn to the shawl/scarf because of the size of this sample. If it is too big it won’t work right. I checked my needle size and the pattern again. Yep. I was using the right needle. Then I checked the gauge. Holy smokes, who ever checks the gauge on a shawl? Well, it might have been nice if I had…
My best friend Deb helped me rip it all out. She’s fearless that way, and is know for her ripping (and cutting) episodes. Hmmm… what a good opportunity to make some yarn color changes. Since I just happened to be in a yarn shop…
I’m approaching the half-way mark on the shawl now and the colors are working out great. I’m going to get a lot of use out of this, and I learned a lot while going through the process. As you can guess, it has taken several weeks to work my way through the different iterations of the Mixology, and there were some big breaks where I just lost myself into a book for an evening and let the knitting sit in a corner to think about what it had done for awhile.
I read a lot, and I’m doing a reading challenge at Goodreads. With a sense of optimism I committed to reading 50 books this year. Book after book, week after week, I have been chomping my way through mysteries, science fiction and popular novels. I rate all of the books at Goodreads, and they almost always get 3 or 4 stars (out of a possible 5). I usually like all of the books that I read, and they certainly keep me entertained, but I long for a book that is well written, with characters of real depth, and a sense of magic. I don’t want to know where the book is going before I get there. I want to feel impacted by the book. I want 5 stars!
Well, during the various Mixology melt-downs and knitting breaks I found two treasures lurking in my Nook and on the bookshelf. Two remarkable books that deal with death and loss, family dysfunction, grief, crisis, and the eventual coming into their own of the young people who make their way through the emotional storms in each book. Seriously, I’ve been up half the night with each of these. I had no idea that they would deal with similar subjects, but somehow I launched into them back to back, and will treasure each book for quite some time. Here they are: Tell the Wolves I’m Home by Carol Rifka Brunt and Everything I Never Told You by Celeste Ng. I highly recommend both of these books.
You know, I did all of that knitting with yarns from the stash (until I got to the last version of Mixology), and both of those books have been with me for months. I need to toss the house to look for other treasures. I wonder what is in the fridge, although things abandoned there are usually dangerous. Still, I’m feeling really hopeful as I write this. I’m going to poke around in the kitchen as soon as I finish this. Chocolate. I bet there is chocolate down there.
It seems like I just wrote a “rare disease day” post just yesterday, but it has been a whole year already. Actually, I think that I was really lazy last year and just re-posted the previous year’s blog post. Anyway, tomorrow (February 28th) is World Rare Disease Day. This year the motto is “Show Your Rare”, which is a little scary as it sounds vaguely like how I might order my steak, but I’m game. I’m rare, and here is my story.
First things first. Let’s talk about rare diseases. Here in the United States, a rare disease (also known as an orphan disease) is one that affects fewer than 200,000 people in the US. The bad news is that there are a lot of rare diseases; over 6,000 different diseases that impact about 25 million people just here in the US. Many of these are genetic in nature, and they tend to be chronic (more about that later).
I joined the rare disease club the day that my systemic sclerosis (a form of scleroderma) was diagnosed. With only about 100,000 cases in the US, we are definitely rare. Here’s the scoop on my disease: it is progressive, disabling, chronic, and possibly fatal. It shares some characteristics with cancer cells. It is also mostly invisible to other people, and people have no frame of reference to understand an illness that they have never heard of before, so they tend to be dismissive.
My hands look strange, but I am doing really well all things considered. I have good circulation and flexibility which my doctors think is due to knitting. “Knit as much as you can!” was the recommendation. See, every setback in life has a silver lining.
What can’t be seen is my astonishing fatigue, muscle/joint pain, and brain fog. So much brain fog. I’m also accumulating organ damage as the months pass by. Digestive system damage, kidney damage, lung damage, and blood vessel damage that is slowly increasing the pressure in my heart.
It’s like a scene from the movie, The Terminator. You know… if you substitute this line about the Terminator from the movie with the word scleroderma it would be… [Scleroderma] can’t be bargained with. It can’t be reasoned with. It doesn’t feel pity, or remorse, or fear! And it absolutely will not stop, ever, until you are dead!
Mortality rates are down for my form of the disease due to new drug interventions. The other good news is that it is moving really slowly in my case. I think that I have had this disease for decades, and only now, in my 60s, is it catching up with me. I’m on the best drugs available, I love my doctors, and they have slowed the disease progression down tremendously over the last couple of years.
But I’m still dealing with a serious chronic illness, as are many other people with rare diseases. For me, when trying to explain my illness to others, it is the concept of “chronic” that causes the most trouble. People tell me to get more sunshine, more exercise, better food, use essential oils, whatever, so that I can get better. That’s the way it is for many health conditions, but not for a chronic illness.
There is no better, I tell them. Only this. Nope. They will insist that I can get better if I just try, and take it as defeatism when I calmly explain that some of this damage can’t be reversed. It is possible to get better without getting well, they will say. You look so great! It’s like it’s a personal affront that I can’t just be cured. If they haven’t seen me for a few months they will express surprise that “this is still going on”.
It is the concept of “chronic” that is the problem. To accept that you are sick is not weakness or “giving up”. It is coming to terms with the nature of your enemy.
So here is my Rare Disease Day request for anyone who has managed to read all of this. Accept chronic. Ask the person you are talking to about how they are doing. Ask what their doctors are telling them. Accept that they are in a situation that they can’t escape from. Don’t shy away from the fight if you care about that person.
If you know the movie “The Terminator“, you know that the heroine of the tale, Sarah Connor, was a hell of a fighter. She never, ever gave up, and in the end she got the best of the monster trying to do her in.