life with a chronic disease and a really big yarn stash
Author: Midnight Knitter
I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.
My son has a beautiful Maine Coon tuxedo cat. The family joke is that she controls the weather.
Here she is, Maya Isabella the Weather Queen. She actually considers herself a princess and demands regular attention from her main subject, my son. Kitty treats now! Come run my drinking water for me! Come pet me now!! Time for me to go outside to catch bugs!! She also takes instant ownership of any knitting left unattended…Bless her heart. Tuesday she sent me a blizzard, the first official blizzard in the Denver area in several years. The wind howled and shook the house overnight and this is what the backyard looked like in the morning. My cats were not amused. I should note that there was almost no snow at Maya’s house!
The cold weather and previous snow storms had already launched me into some serious mitt knitting, but this week’s storm really pushed me into mitt knitting overdrive. Here’s what happened during this week:
I actually finished these mitts before the big snowstorm and took the picture as the first little pellets of snow arrived. These are Sugared Maple MItts (designed by Melissa Schaschwary) knitted in Zen Yarn Garden Serenity DK. Love the cashmere!! The knitted texture was really easy to knit and kind of reminds me of the waffle pattern in Henley shirts. These are really comfy mitts. If you yearn for more details here are my notes on Ravelry.The first mitts were so much fun to knit and wear I just cast on and started another pair. This is Zen Yarn Garden Serenity DK again, and the purple is actually as intense as in the photo. I have a cousin who can’t get enough purple so I already know where these are going when they are done.My sister let me know that the mitts I gave her for her birthday last year were flawed: the cable just didn’t stay parked on top of her hand the way they should. My first impulse was to tell her to stop being so persnickety, but upon reflection I decided that she may have a point. I made some changes to my generic rib and cable mitt pattern that would allow me to make her mitts that have the thumb moved over to place it under the index finger.Here’s the palm view of the mitts. The gusset has been moved over 4 stitches and starts at the wrist. I’m hoping that if her thumb can move without tugging on the body of the mitt the cable will behave itself. This yarn is Malabrigo Rios which is one of my favorite hand-painted superwash wools. I wrote notes to myself about what I had done and they are here on Ravelry.
I’m still not completely happy with the new mitt design. What would happen if I added more ribbing at the top and bottom of the mitt? What if I changed to a smaller needle to do that ribbing at the top? Should I make the top so long it can be folded back in a little cuff? Hmmm… I have more Rios to play with (well, duh! Yarn Stash Queen here!!) and I’m itching to CO and get started on another pair. I have some more Zen Yarn Garden that wants to be mitts, too. I try to not overthink this compulsion to create mitts. I just knit them up and put the little guys into my mitt bin where they can all hang out together and pretend to be the ultimate cool knitted items.
My box of mitts: last Saturday I took the bin to my scleroderma support group meeting and gave away or sold 11 pairs! I’ll be taking the bin back to the next meeting as several people thought they might want more pairs for Christmas presents. During the week I handed out business cards to more customers who admired the mitts I was wearing and asked how they could get a pair.
Looks like things are picking up in the mitt business. All of a sudden mitts ARE the ultimate cool knitted item. Must be all the snow; it is snowing again this evening and there is ANOTHER snowstorm predicted for Thanksgiving.
I made my first Christmas make list a few weeks ago and it is getting close enough to the main event for me to start to take things seriously. Usually my family and friends get knitted items; they all have knitted mitts, shawls, cats, and socks from previous years. I had this idea that I would change things up and do some sewing this year. Lord knows I have enough Christmas fabrics! Last week I pulled out everything that looked a little Christmasy from my fabric stash and filled a crate with candidate fabrics. If I sew for a couple of hours each day I should be able to make some real progress on the presents without the usual last-minute stress.
Well look at this! There must be a few presents in here…
I found several projects and kits from previous years that didn’t get made or finished: a set of placemats, an advent calendar, a table runner and some ornaments. Hey! I should get cracking! Of course I decided to make something that wasn’t any of those items for my first project. The problem was these exceptionally cute fabrics that all kind of went together…
How happy can a set of Christmas fabrics get? These are the leftovers from some projects I made in the past with one new buy added in. They look like they were made to go together, don’t they, but some of these are over 10 years old.
I decided to made a series of stacking fabric bowls similar to the ones that I made for my sister for her birthday. The dark green solid will be used for the lining of all the bowls except the smallest, and the bowls will be sewn in the order I have the fabric stacked. I even found a variegated thread that I could use. It’s a plan!! Here is the pattern that I found online to use for the bowls.
The bowls are made by first constructing a series of quilted squares. To make these bowls I created 12″, 11″, 10″, 9″, and 8″ squares. (OK, I have to be honest. That was the size of the squares before I sewed them. The finish squares are actually 1/2″ smaller because of the seams. I decided to not sweat the small details.) 🙂I did the easiest quilting possible for the squares. Isn’t the thread cute? That was why I used the solid green for all of the linings.Stitched down darts in each corner create the bowls. Cute, huh. I’m glad that I used a print fabric for the lining of smallest bowl.
There is enough of some of the fabrics to use them for more bowls (I think that the largest bowl is exactly the right size to hold a Christmas coffee cake or maybe a hand-woven dishtowel with a package of my favorite Christmas cookies…) or to make a set of placemats. I have the perfect family placemat pattern all ready to go and a set from last year that just needs to get some quilting done and the binding attached. I am trying to stay out of the quilt store but I can make everything work if I just add a couple of coordinated fabrics…
Do you see why I have such a big stash? For now I have organized two more set of Christmas bowls and set aside the fabrics for Thanksgiving bowls that I can use next week when I go to my son’s house for the big meal. After that I can attack the table runner and placemats.
So much fabric, so little time. And I thought I had a problem with yarn…
It’s been a year since I was first diagnosed with scleroderma. Actually, it has been decided that I have the form of scleroderma called limited systemic sclerosis (the disease formerly known as CREST). Sounds kind of fraught, huh. That’s because it is; no matter what I think I know about my condition this week, by next week things will probably change. It has been quite a journey this year and now that all the dust has settled from the latest rounds of medical tests I wanted to share my thoughts.
There is no question that the first months after my diagnosis were filled with waves of horror and grief. At first I was just stunned to discover that I might lose the use of my hands. Then it dawned on me that my ability to live independently might become problematic; I needed to make plans to activate a support system for myself at some time in the future. Eventually I found out about the fatal complications and the high mortality rate. Well, shoot. During this time I became a driven knitter: endless pairs of fingerless mitts rolled off my needles.
My sister, who has a somewhat warped sense of humor, sent me this card about the time that I learned about my risk for pulmonary hypertension, an often fatal complication of limited systemic sclerosis.
Yet, it has been a year and I am still here. I sailed through the medical tests and none of the frightening medical complications have manifested themselves. My lungs and heart are fine (huge woohoo!!). My GI tract hasn’t gotten worse. My hands are very swollen and the skin is getting hard (one of the hallmarks of scleroderma is hard skin that forms due to lots of collagen deposition and scarring; my arms and legs are getting hard too), but they work just fine and are actually much better than they should be. My rheumatologist has advised me to knit as much as possible; what a hardship! Other symptoms have improved and I have transitioned onto a battery of drugs that have good track records for improving the quality of life and increasing survival rates in patients with my condition.
So, what have I learned this year? Here is my reflective collection of observations as I look back from the one-year viewpoint:
People are more important then things. Period.
..but they just don’t get chronic conditions and they tend to underestimate the seriousness of conditions that they can’t directly observe. In general people on crutches or using oxygen activate concern, but if you have flaming gastritis, the dizzy wobblies, and your muscles are on strike it’s easy for them to adopt a dismissive attitude. <sigh>
Medical personnel can be appallingly insensitive. Last week the technician doing my lung scan mentioned that I had a lot of doctors because my disease was really rare; it was important that the doctors get to learn as much from me as possible. Good lord, I wondered. Maybe she was raised by wolves…
As a corollary of the above observation, I have also discovered that I can’t assume that the medical personnel that I come in contact with actually know about my condition. One nurse thought that “systemic sclerosis” was “multiple sclerosis”. A doctor gave me a pep talk about how other conditions were worse because some of those patients actually can die from their disease. (“Did you want to hit him?” asked my rheumatologist…) One thing I can count on, however, is that they will put me into some scary machine to look for a possible blood clot. What is up with all the blood clot hunts?
I do have some wonderful doctors! Because of crazy interactions with random medical people I have decided that it is best to be proactive: last month I put this tag onto my keys and the little card in my wallet has the business cards of my internist and rheumatologist stapled to it.
There are few things as empowering as discovering that you won’t live forever. Why sweat the small stuff when you are facing down the long odds? My drugs have a small chance of a fatal brain infection? Whatever. Hand them over, Sparky, I am on board! I never worry about money (bad when I’m in a yarn store) or running out of gas, and I am taking more risks than I was comfortable with before. I mean, what is the worst thing that can happen? This week I figured out how to identify all of the electrical circuits of the house and rewired and installed a new doorbell. I didn’t worry (more than once) about getting knocked on my butt by an electrical mishap. Ha! In my younger days I hated to even change light bulbs…
Elizabeth Zimmerman was right. “Knit on with confidence and hope, through all crises.” is a motto that I can live with.
No, I won’t be skydiving! I’m not that risk-seeking. 🙂
It is so much easier to be happy than sad. Plant flowers. Read books. Knit like the wind! Chase bees. Go to lunch with friends (and get dessert!). Watch meteor showers and be sure to catch the Super Blood Moon. Talk to strangers in bookstores and coffee shops. Be kind whenever you can. Never miss an opportunity to take a picture of a great sunset (or a cat). It is really, really easy to be happy, even when you’re in a crazy machine that is looking for blood clots. 🙂
I finally went to my first scleroderma support group meeting a couple of months ago. I’d never met another person with scleroderma; it was a little extreme but good. Like me, they all suffer from cold hands. Unlike me, most of them also talked about the struggle to manage pain in their hands, and I could see that several of them had limited use of their hands because the skin was so tight. Remember all of those fingerless mitts I knitted during the sad times? I think that I have found a home for them.
These are the Om Shanti Bed Socks by Alice Yu. That cool yarn is Serenity 20 by Zen Yarn Garden. They are extremely comfy and the snug little ankles keep them on my feet overnight. Perfect for the sleeper with cold feet. (Yep, that’s me. Thanks Raynaud’s!) Here are the project notes on Ravelry.
If you are interested in the history of these socks, here are the related posts:
I am almost caught up with the resolution socks; last night I shopped the stash to pick the yarn for the November Socks and am torn between two different patterns. Next week I’ll make the decision, wind the yarn and cast on. Here’s the problem: I found a wonderful blue yarn, but there is also this gold/purple/brown yarn that looks like the perfect color for November… The blue yarn works for the pattern I planned to knit, but the autumn colored yarn is so perfect that perhaps I should give it and a cute lace patterned sock a try… Maybe I should make two pairs of socks this month. 🙂
I worked like a maniac this week on the bed socks because it has suddenly become cold outside. We had a nice snowfall Thursday, and the last two nights have gone well below freezing. That was it; I had to bring some of the outdoor plants into the house for the winter. I went to the local Home Depot store and bought some plant grow lights for them, and with some care and rotation under the lights I hope to keep them going until next spring. Here’s the winners in the survive the winter plant lottery:
The pink daisy-like plant moved into the bedroom by a window. Looks happy, doesn’t it.The geranium is also getting parked in front of the bedroom window where it will hopefully get enough light. I plan to let both plants visit the plant lights in my craft room a few days a week for a light boost.I pruned this plant back to about half its height and put it in front of the window in the craft room. The orchids have been doing pretty well in this location: both orchid plants bloomed for me last year. The (very cheap) wood shelf unit actually has three shelves; I bought clip-on grow lights that I can move around to give the plants light from different directions this winter to supplement the natural light.
I have more plants shoved onto the two shelves below this one but they are just too messy to show off right now. I need at least one more plant grow light to make things work, and the lower shelf plants still need to be pruned back. I’m pretty sure that the plants will drop a lot of leaves as they adjust to the lower light levels, but they should all make it and hopefully will manage to produce some winter blooms. One of the plants on the lower shelf is a rose bush that has survived indoors for three years in a row. I know he’ll make it! The pink flowering plants are also producing a lot of scent which makes me just happy. It’s like having a little piece of summer all year long.
I would love to do a Wordless Wednesday. It would be so cool. I think that I should set a goal for myself to work up to it slowly and to capture the best picture that displays the struggles/successes of the week. Since I didn’t do that here is an almost wordless Wednesday update of my current projects.
Om Shanti Bed Socks socks by Alice Yu. Here are the Ravelry project details.Strips pulled from the long edge of the giant batt and rolled up ready to spin. The spinning wheel rattled his double treadles in excitement the whole time I was doing this…Singles spun using a supported long draw that will eventually make a fluffy 2 ply worsted weight yarn. Happy spinning wheel.You wanted to spin? Whatever…
It’s raining outside and will change to snow overnight. I have the flowering plants that I want to keep inside and I am ready to ply this yarn tomorrow. Sure wish my bed socks were done. Have a great rest-of-the-week everyone.
Halloween! It is also the last day of the month and I’ve been busy. Pumpkins, decorating, candy all ready to do for the trick-or-treaters, and projects. One project is done and two more are getting started. (What did you expect? It is always best to have many more WIPs than FOs…). Here’s everything in pictures.
The September socks are done!! OK, they are only a month late. Don’t they look great? Here are the project notes on Ravelry if you want the details. Introducing the October 2015 socks. Say hello to the Om Shanti Bed Socks by Alice Yu. I found the pattern in my copy of the book Socktopus (by Alice Yu). As you can see they are knit from the toe up. I’m using some Zen Yarn Garden Serenity 20 yarn that I found in the stash (no idea what the colorway was called…) and here are the starts of the notes on Ravelry.Finally, today is my spinning wheel’s birthday. That’s right! He was born on October 31, 1996, the 10th wheel born on that day. He is a Schacht Matchless double-treadle wheel and he is just in the prime of his life. and here is his birthday present: a giant batt that I bought last spring at the Interweave Yarn Fest. Don’t those colors look perfect for a Halloween baby?Here is the batt unrolled. This thing is huge: 8 ounces of wool. I cannot wait to get spinning on it. I have agonized about how to approach the project and have finally decided to pull off strips of fiber the length of the batt to spin semi-worsted (long draw) and will then Navajo ply to create a round three ply yarn that maintains the color changes. I’m hoping for a light worsted weight (DK) type yarn. I want to either make a Brickless shawl or will weave a small wall hanging from it. The wheel is pretty excited about this project. Well, he should be; it’s his birthday! 🙂
That’s it. Hope you all have a great weekend. This is the end of daylight savings time here so get an extra hour to sleep and knit. Woohoo!!
My wrists are behaving again: every day it seems that I can knit a little longer. Since I got the queue organized and a lot of projects lined up I have been on fire. Since it is Wednesday I thought that I would just show off all of the knitting WIPs.
September Socks
Oh yeah. I was making a pair of socks each month this year as my New Year’s Resolution. I remember now. It is now almost the end of October, and the last time I made a sock was… July. My favorite yarn store received a big shipment of Malabrigo Rios last week and I found this:
Isn’t this the perfect color for September? This is 100% superwash merino and the color is so rich and wonderful… I decided to make the Stepping Stones socks from the Book of Socks by Clara Parkes. The pattern is also free on Ravlery. My copy of the pattern says to use size 2 needles (with worsted yarn? Not with these wrists! I decided to use size 4 needles and the sock came out springy, wonderful, and has a good fit on my foot.This happened while I was trying to take pictures today for this post…To get the shot I had to put the sock onto my foot. Ta-daa! Here it is. The pattern was designed to change on the instep but I kept the same stitch pattern down the whole sock because I kind of liked it. 🙂 It’s nice how the colors in the yarn are broken up in the sock: no pooling allowed!!
The sock knit up really fast. I should have the second one done by the end of the week. I already have the October Socks ready to go. Catch-up time. 🙂
Daelyn Sweater
I bought this Brooklyn Tweed Shelter in August while doing Yarn Along the Rockies. It is soft, cushy, and fabulous.Here it is as a growing Daelyn Sweater by Isabell Kraemer. It is knitted from the top down with NO SEAMS!! The back is garter stitch which is kind of fun, and there is short row shaping at the bottom of the back so the sweater will have a slight tail. I want this baby done before serious snow arrives.
Mitts!!
I can’t stand it; I always have an urge to knit more mitts. It is kind of irrational as no one could possibly wear all of these, but they are just so cool and a great way to try out yarns and patterns. I’m going to have enough left over yarn from the September socks to make some mitts in the same stitch pattern. I have some exceptionally yummy cashmere blend yarn that nags at me, and then there is this hand spun that I pulled out today for another mitt project I’m dying to do (but I’m not going to talk about it now as, seriously, I think that it deserves it’s own post). Here is the yarn teaser…
Handspun alpaca yarns. Don’t they just look like they want to be striped mitts?
Tonight is the first frost warning of the year so I brought as many of my potted flowers into the garage as I could. I know that they are running out of time, but I hate to let them die. I think that next week I will hang indoor grow lights and get some of them indoors. The first snow can’t be that far off now.
The last leaves are falling off of my trees and it is definitely getting colder, but this potted plant is still blooming its heart out. I moved this one into the garage for sure and may try to save it for indoor color this winter. Maybe it will be easier to capture the seeds once it’s inside. Another project!!
I am just nuts about books. I have been, and always will be, a voracious reader who hoards and treasures books. I have multiple copies of my very favorite books so that no matter what happens, I will always have them. (My most collected books so far: Great Mariaand Floating Worlds, both by Cecelia Holland.) I can’t imagine going through a day without reading. I have books stacked up in a reading queue and more on hold at the library. I am a reader.
Except that suddenly stopped this spring. Around the time my rheumatologist moved me to stronger drugs I realized that I was having a lot of trouble with vocab recall and speech, and I was really struggling to read. Maybe I just needed a better book, I thought, and kept prowling book stores and the library hunting for that illusive great read. It just didn’t matter; no matter what the book was my mind just skittered around and refused to engage in the story. A book that would usually take a few days to read dragged on for a couple of weeks; by the time I finished it I couldn’t remember what it was about. Crazy. Thank you scleroderma!!
Last month I scored a form of CellCept that would play nice with my digestive system and finally settled into a consistent drug regimen. I think that it actually takes weeks (and months) for the full benefit of these immunosuppressant drugs, but this month I have actually finished three (pretty darn good) books, and the last one I raced through in just a few days. OK, the drug is also causing some sleep disruption, but I’m finally reading again!! Woohoo! Here are the books of October:
This book is a continuation of the Millennium series by the deceased Stieg Larsson. Oh, my goodness. Lisbeth Salander and Mikael Blomkvist are back. If you aren’t already familiar with these characters, let me just say that Blomkvist is an investigative reporter who is the champion of truth, loyal to his friends, famous for huge exposés, and sometimes hauled into court. Salander is… well, she is different. She’s brilliant, a computer hacker extraordinaire, a survivor, a champion, and probably a sociopath. She is broken, and she if fabulous. This book brings back the flavor of the previous books with the same intricate plotting; a murder, a conspiracy, convoluted electronic trickery, and the pace of a perfect thriller. I don’t think that it was quite as dark as Larsson’s books, but it was still a really good read.
Sometimes a book is more of an experience than a story. OK, did I mention that I’m having vocab recall and brain fog issues? Reading this book just messed with my head but was so amazing that I kept going. The story unpacks in bits and pieces back and forth in time as we learn about the life of Dorrigo Evans, an Australian doctor of the last century. Dorrigo falls in love, goes to war, survives the horrific ordeal of building a railroad in the jungle as a Japanese prisoner of war, becomes a famous war hero, marries, has children, and carries a book of Japanese death poems. It is a magical story of love, guilt, endurance, survival, betrayal, and endless charges ahead in the face of impossible odds. I’m not completely sure that I understand this book, but it haunts me still.
The Narrow Road just warmed me up for this one. Once again I was reading a rich and complex novel that centered on the life of one anchoring character, Holly Sykes. The plot is broken into 6 segments that move forward in time (thank you, Mr. Mitchell!) but also loop and reconnect to characters and events in the other sections. Holly is extraordinary in that she hears voices and has accurate premonitions; the plot deals with these supernatural elements but also builds rich characters and situations that kind of left me stunned. It was with this book that I realized that I was once again a reader. I was immersed in the story, drawn to the characters, and caught off guard by twists and turns in the plots. This book had several story threads going at once, and it should have been confusing, but it wasn’t at all. I loved it and even cried at the end.
Three good books in a row! When I logged them into Goodreads today I noticed that two of the books are on a list for the best books of 2015, and the third is on the Nook Best Books List. Yep! They were just great and what I needed to return to reading. The number one book on the 2015 Tournament of Books list is one called Station Eleven. Hey, it is a science fiction! Hmmm… I may have to check that out.
Yarn, Books & Roses 