So much snow! Last Friday night the rain started just as I was heading to bed, and in the morning there was already several inches of snow on the ground. It just poured snow for the next 24 hours, and even though there was a lot of melting (thankfully on the sidewalks and streets), it really piled up on the lawns and in the trees. When it was over I had over a foot of heavy compacted snow on the deck and lawn.
Sadly the snow hit just as many of the ornamental trees were in full bloom. This tree, which might have been a crab apple, really got socked in snow.
Trees all over town lost branches as the weight of the snow became too much for them. Ever an opportunist, I brought some of the blooms from broken branches into the house.
They smell great too!
The blooms were a happy addition to a basically unhappy house. Last Friday just as the storm was getting ready to break I got a call from the pulmonologist’s office; my test results were back and she was ordering supplemental oxygen for me to use overnight. It was kind of a shock as I’d convinced myself that my lungs weren’t that bad. Less than two hours later the machine had arrived and was set up for me to use.
Here’s the oxygen condenser that I need to use while I’m sleeping. It buzzes, vibrates, and makes other noises that scare Yellow Boy. Cat harmony is definitely not being maintained. I’m getting used to it pretty quickly; it is kind of like sleeping in an airplane. 🙂 Now that I am getting more oxygen during the night I’ve noticed that my morning chest pain is gone. That’s is a good thing! Sorry Yellow Boy, the machine stays.
You never saw such unhappy cats. Between the snow and the machine they were just miserable.
Here they are anxiously waiting at the back door to be let out first thing in the morning. MacKenzie is just awful about this. He starts meowing (yowling!!) and scratching at the wood at 6am. He doesn’t come upstairs to wake me up because, well, machine… Finally I crawl out of bed to let them out. Silly cats, there is snow!! I had to shovel them a path on the deck they were so heartbroken by the state of backyard affairs. Here they are three days after the storm and do they look appreciative? No. They are cats!! They don’t do appreciative…Cats do sulky outrage. MacKenzie especially has been a pill all week. He was all over stuff when I tried to work at the computer. He demanded endless treats. He followed me from room to room and participated in all crafting ventures. If I stopped paying attention to him the paw (with attached claws) came out.He took to lurking in the “launch tube” part of his cat tree at the back door. Every time I opened the door he streaked out before I could stop him. We had some scary moments when he got past me into the garage and the electric door was closing. Truly, he was a handful all week.Tonight it has been a week since the scary machine and the snow arrived, and things are almost back to normal in the cat world. Here he is purring on my lap and posing for a selfie. What a sweet boy. Ha!
This weekend is going to be nice and the last of the snow should melt. The cats are slowly adjusting to the new machine and this morning we slept in a little. All is once again right in the cat world.
Here is my crazy week with a lot of picture support.
Last Thursday I went to the first appointment with palliative care. On the way in from the parking lot I had to walk under blooming trees. Look! The first bee of the season. 🙂 You know, it was hard to get this shot with the phone camera… I think that I entertained some of the other visitors to the clinic while I chased this little guy around.
I’m pretty sure I’ve flunked out of palliative care. Here’s the problem: I need someone to help me manage my overall medical care (since I have six different doctors at this point…) but they don’t really do that. They do help people with serious end of life decisions and provide medical options to ensure their comfort; I got some great advice and then they kind of turned me loose back into the health care stream. I’m kind of a catch and release palliative care patient: they will call every three months to check on me, but basically I’m doing pretty well. I have a serious illness, but I’m not yet seriously ill enough to really justify taking up their time. I’m already doing a lot of the things that they encourage patients to do (and so do all of you, too.) It’s really important to do something that helps with stress like meditation (or knitting, spinning, and weaving!) and they told me to start keeping a journal (Oh, you blog? Never mind! Just carry on with that, they said.) Really, it was encouraging. They told me to use the inhaler as much as I want and to go to more frequent appointments with my primary care doctor. Check. I can do that. 🙂
It is good to think about end of life decisions, though. Here’s how I reacted: I called my kids (and grandson) and told them that we need to all go to Walt Disney World for a fun vacation. We will ride the Monorail, buy Micky Mouse ear hats, go to the Star Wars attractions, and it will be wonderful. I’m also systematically cleaning out all of my junk from cupboards and the garage. Does anyone want my Great-Aunt Alice’s set of crystal platters? How about a classroom set of homemade DNA models? A well-used heavy duty 3-hole punch? Right. All those things are out of here!!
Friday I decided to go wild and made homemade chickpea hummus using the recipe from fellow blogger Ros (Cooking Up The Pantry). I cooked the chickpeas in my crock pot for 6 hours on low, and then everything went into the food processor. Oh, my goodness! Several days later I am still eating it with veggies and warmed flat bread. Yumm!! All of the food Ros has in her blog is to die for. Seriously. I would knit for her for food.I’m still weaving on the dishtowels. I’m getting towards the end of the warp: this is the fifth towel in the set. Weaving is really quality time for me. I worry about the plot of the book I’m reading, come up with my grocery shopping list, and dream up new patterns for fingerless mitts. Once I’m in the zone it is like magic.The last two days have been warm and I’ve started clearing out the flower beds. Look! Pansies that survived the winter!and of course the Phlox has started blooming. I have a big bed of this and it keeps sending out satellite colonies of phlox all over the yard.Not only did the phlox start blooming, I got the Waiting for Rain (by Sylvia Bo Bilvia) shawl finished. The colors in this yarn look just like the phlox to me. This is a perfect springtime shawl! Here are my project notes on Ravelry.Isn’t the yarn yummy? this is LYDIA sock yarn in the colorway Garden Party. I added a picot edge to the bind off. Tonight I’m working on my Snowfling Mitts again and reading my current book. The suspense in the book is just killing me. Every few chapters I have to take a little knitting break. 🙂 If you can’t read the title that is Every Fifteen Minutes by Lisa Scottoline.
It has been really nice this week; warm and sunny with blooms and bees. However, this is Colorado; we have a winter storm warning posted for tomorrow because a humongous storm is roaring in to dump huge amounts of moisture for the next 5 days. Seriously. I’m wondering how many inches of snow is made by four inches of water. The storm is the big story on the news and each update reports it to be building in intensity from the last report. Yikes! Maybe I should pick up speed on the mitten knitting.
That’s OK. I have hummus, books and yarn. I am all good.
Have a great weekend everyone. If you should happen to see a snow shovel, think of me.
I have been struggling for weeks and weeks now. I had the flu not long after Christmas and it just never completely went away. I have a pain in my chest, a cough, fatigue, and I just run out of air more easily than I should. Seriously. I have trouble talking and breathing at the same time if I come up the stairs at home. This isn’t reasonable. I was having trouble climbing stairs before I got sick, but now things are ridiculous!
This is the joy of life with a serious chronic illness. There are so many little symptoms and problems it is hard to know what’s important and what is just another day of systemic sclerosis. I tend to wait out symptoms for a couple of weeks before I contact a doctor; then I’m at the mercy of waiting for lab results and a call back. Ugh! Things drag on for days and weeks as I process through my medical team asking them to find out what is wrong with me.
For two months I have been bouncing back and forth between my rheumatologist and my internist. My rheumatologist has been concerned that my heart is misbehaving (and sends me on to the internist), and the internist suspects that my lungs are to blame (and refers me back to the rheumatologist). It’s like following a trail of crumbs hunting for answers to an ill-formed question. No test result provided a clear diagnosis.
Except I can’t breathe, and it seems to be getting worse.
Two weeks ago on my way home from my weekly knitting group I was hit with a surge of assertive self-determination. Time to stop acting like a victim, I told myself. Instead of going home I drove for another hour north and requested a full copy of all my medical reports from the hospital where my pulmonary function and echocardiogram tests were done. I knitted on my shawl in the lobby while waiting for the reports, and then took them home with me in my knitting bag.
Look at this shawl! I’m through the first section of short row lace. This is the Waiting for Rain shawl by Sylvia Bo Bilvia.
I am a lucky, lucky woman. I have a molecular biology degree and I once worked in a rheumatology research lab. I taught advanced placement biology for years and I know a lot more anatomy and physiology then the average patient with my condition. I should be able to follow the trail of crumbs within the stack of medical records, I reasoned. I laid out the lab reports in sequence, looked for patterns of change in my lung and heart test results, and took to the internet to understand what strange acronyms meant. I found a presentation that explained pulmonary function tests. Well, dang. Even though the summary notes from the physicians who interpreted my lab test used words like mild, early, and upper range of normal, it was clear to me that my lungs were getting worse over time. Maybe a lot worse.
I emailed my rheumatologist a note telling him that I had picked up up my tests and saw that my results suggested early interstitial lung disease (the summary of the latest test). I reminded him of my symptoms and asked about next steps for me in addressing/diagnosing my ongoing problems. Here’s the deal: an email is part of my official medical record. More than a phone call, it should provoke a response.
Oh, it did! I received a call within an hour from his office. In the next week I had two phone conferences, another echocardiogram, and a referral to a pulmonologist. I was able to refer to specific data in all of my conversations with my doctors. I got a prescription for a badly needed rescue inhaler. Finally! Forward progress!!
Yesterday I saw the pulmonologist. It was a beautiful warm day and a perfect drive through the countryside to get there. What a wonderful, wonderful doctor! She made it clear that I am not over-reacting, I do need better coordination of my health care, and she will be a warrior for me. I wanted to hug her. Here’s what happened during the visit:
I do have interstitial lung disease, and it is serious; almost 20% of my lung volume is already gone. This is bad news because it happened while I was receiving drugs to treat the systemic sclerosis. I will be completing more tests over the next week to nail down the diagnosis, but there is already so much damage that she will coordinate immediately with my rheumatologist about treatment options; she sent him the message while I was still in the office. I think that I will be seeing more/different meds in the near future. I may be going on oxygen overnight. I hope that I don’t have to do IV infusions. I have been referred to palliative care and will be receiving a case manager to help me locate resources and to coordinate my ongoing care with the medical team. I plan to ask the case manager if I should be referred to a scleroderma specialist at the University of Colorado, but I totally want to keep this pulmonologist!!
After so much time trying to get some answers/help the response was actually overwhelming. I came home and for the first time since I was diagnosed I cried.
The front yard “welcome bear” could still be seen between snow drifts when I went out to shovel. Cute, huh!
Today I woke up to a full-blown blizzard; howling wind and almost 2 feet of snow! I didn’t get any calls about medical appointments and I certainly didn’t make any. I knitted, shoveled snow (slowly!) and enjoyed the break from the immediate crisis. I started the next book in my mystery series. I worked some more on my shawl; it is going to be beautiful. My roses are safely enveloped in an insulating three foot drift of snow. I was able to successfully advocate for myself and secure medical treatment. Tomorrow the sun will be back out and I will start scheduling appointments.
This is not the journey that I would have chosen for myself, but I will travel it as well as I can, knitting, reading and tending my roses all the way.
Today was Rare Disease Day. I woke up with notes in my email box reminding me that this was the big day. Oh, yeah. I guess I should say something about it on the blog, but what? I mean, I do have a rare disease, but why should anyone else care about it?
I spent most of the day thinking about that. I worked on the loom (weaving is right around the corner!), cleaned the house, cooked a yummy dinner, and pondered the relevance of rare diseases throughout the day. For a while in the late afternoon I almost started writing, but ended up knitting instead. Now it is evening and I think that I might be there.
You see, anyone dealing with a chronic condition eventually comes to terms with their altered life. Grace under fire becomes the status quo. We deal. We lean in. Maybe the big success of the day was taking a shower or getting dinner cooked, but by golly we did it!!
If you have a rare disease, it is a little harder yet. People have never heard of your condition. Your doctor may have never treated another person with your disease before. Your friends and family sometimes suspect that you might be an attention-seeking hypochondriac. You wander the internet looking for answers. There is little research being done for your disease because so few people are impacted by new drugs or treatments. In a world with finite funding for medical research it makes better sense to put the money where the most patients are: cancer, diabetes, heart disease, asthma. I get it.
The purpose of Rare Disease Day is to shine a little light on the many, many conditions that are classified as “rare”. It is also a campaign to raise some awareness about the human impact of being a patient with one of these conditions. To be frank, it kind of sucks!
Fat swollen fingers with thick stiff skin are part of my condition. On this day I accidentally triggered a Raynaud’s attack that cut off the circulation to one of my fingers.
You see, rare diseases are also referred to as “orphan diseases”. You do feel like an orphan. Alone, alone, all alone. I’m lucky to be hooked up with other people who share my condition, but that is because I live in a large metropolitan area. I have systemic sclerosis*, which is considered the most severe of the diseases in rheumatology. There are only 100,000 of us in the United States (which, if my math is right, is 1 in 50,000 Americans), so if you live in a small town chances are you will never find another person who has the same illness that you do. I am lucky. I belong to a support group and have found online resources, the most important of these being you people who take the time to read my blog.
Here is what I decided is the most important message that I should put out on this day set aside for me and all the many, many other people who deal with a condition/illness that no one has ever heard of before. If someone says, “I have (crazy-ass disease you’ve never heard of before)”, don’t say, “I’ve never heard of that!” in a dismissive manner as you turn away. Say instead, “What is that?” Invite the person that you are talking with to teach you about their unusual condition. Really, it will mean the world to them.
They will feel less like an orphan if you do.
*Systemic sclerosis, which is serious form of scleroderma, is an incurable, disabling, and progressive autoimmune disease that causes inflammation and scarring of the connective tissue of the skin, blood vessels and internal organs. It is often fatal, but in recent years the survival numbers have improved due to new therapies (I love my immunosuppressants!). Currently there is no drug to directly treat systemic sclerosis but there are drugs and treatment strategies on the way. Right now there is a bill in Congress to fund scleroderma research called the Scleroderma and Fibrosis Research Enhancement Act, H.R. 3666.
This is it. I’m pretty sure that I am back. Right after Christmas I got sick with the flu, one thing led to another, and I was taken off the drugs that I take to treat my systemic sclerosis (scleroderma). Yep. My autoimmune condition flared of course. Two weeks ago I was finally cleared to start my immunosuppressant drugs again.
Hello energy! Wow. This week a surge of creativity arrived. I was up and pulling together projects right and left while cleaning house (and putting away the Christmas decorations). About freaking time, huh. My poor yarn stash had started to despair. The loom was considering contacting an adoption agency (that darn spinning wheel put it up to it. He has always been a trouble maker…). Even the car was becoming depressed.
My energy level has come up just in time. Three weeks ago my internist sat down with me and gave me some bad news: I have developed symptoms that suggest that my lungs are now under attack and becoming scarred. I kind of expected it as I have been having shortness of breath episodes, but still it isn’t a good development. I made an appointment with the rheumatologist. Yesterday I saw him, he decided to increase my drug dosage, and he also ordered lung testing for next week. When I came out the door from the clinic the wind was blowing, the sun was shining, and I was happy to be alive. No matter what happens next week, this week I am full of energy and feeling pretty good. Got to love these drugs!!
So I decided to not go right home. I went shopping!! Hello! The rheumatologist is located in a city north of Denver near a major yarn store, Shuttles, Spindles and Skeins in Boulder, Colorado. I have needs. The loom is making threats…
At Christmas my cousin admired my dishtowels. I want a couple more of the white/color checked towels, and she wants the towels with no white. Time to warp the loom, but I am out of the white and light blue cotton. There. That is a good enough reason to go to the yarn (and weaving) store. 🙂
I found the cotton that I needed pretty quickly. As I tried to walk to the checkout counter I happened to see the Dream Club kits…
The January Dream Club kit had this dreamy cashmere blend fingering yarn and a pattern to make cute mitts and a head scarf. The pattern is called Blue Jean Boheme (by Kalurah Hudson) and while I’m not wild about the scarf, I really like the mitts. I bet I can get two pairs of mitts out of this yarn. Maybe a pair of mitts and a pair of bed socks…
While I was thinking about the bed socks the happy colors of the February Dream Club kit jumped out at me.
Cashmere blend slippers in the happiest colors ever! This is the February Dream Club kit and the pattern that comes with it is called Pleasant Pheasant Slippers by Lara Neel. Say that fast three times! The yarn is worsted weight and called Classy with Cashmere.
I don’t know how those kits jumped into my arms. It just happened. Clutching the cones of cotton for the dishtowels and the bagged kits I managed to get up to the check out counter and found…
Isn’t that the truth!
Okay, I did find some more yarn to add to the pile, but I’m going to save it for a future post. I piled back into the car with all of my happy finds and headed south back towards home through some of the strongest wind in recent memory. Seriously, I was dodging tumbleweeds (while on an elevated overpass!) and playing chicken with wobbly tractor trailer trucks as I raced along through clouds of dust and howling 60 mph wind. It perfectly matched my mood of recklessly joyous living.
My last stop on the way home was at a jewelry store where I bought a new teal colored bead for my Pandora bracelet.
Teal is the color for scleroderma awareness ribbons. This is my own personal “Be Brave” bracelet.
I am rocking the knitting tonight wearing my bracelet. This weekend I will get the warp wound for the dishtowels and the loom will get warped up early next week. You know I’ll be wearing the bracelet when I go for the pulmonary function testing next week.
I know that I kind of did this to myself. I was really pushing things as I got everything baked, stitched, knitted, wrapped, mailed and cleaned for Christmas. It was wonderful. My family was all here on the big day, the dinner was perfect, and it was even snowing lightly making it a true White Christmas. A wonderful, wonderful day.
I was just exhausted afterwards.
Still, I made some after-Christmas plans. I wrote out some ideas for the end-of-the-year blog post and made a list of projects to tackle in the coming weeks and months. Great stuff: weaving, spinning and quilting made the list along with the usual plethora of knitting items.
No New Year’s for us. Mom got sick.
The Monday after Christmas I woke up sick. Influenza!! I had had the vaccine, but I knew that it was unlikely that I would get the full benefit because of my immuno-suppressant drugs. By New Year’s Day I literally couldn’t get out of bed. The next day I dragged into the after-hours clinic and was sent home with antibiotics and some serious cough medicine. Thus a cascade of severe unhappiness was launched. Here’s the short version: bronchitis; removal from immuno-suppressant drugs; allergic reaction to the first antibiotics; more antibiotics; a full rebellion by my digestive system; low blood pressure; dizzy, dizzy, and more dizzy; help: I can’t even manage to knit; a flare of my systemic sclerosis; and a complete helping of why can’t I breathe right yet??? There. That was the whole month!! In fact, it is still going, but I am definitely on the mend.
Take home lesson: it is possible to survive on yogurt, cranberry juice and Christmas cookies. Maybe I should write this up as a new fad diet. 🙂 It is also good to have a pile of books waiting to be read. An emergency stash of chocolate is a given, right? Oh yeah, one more thing: GET YOUR FLU SHOT, PEOPLE!!
Two weeks ago I pulled out my partially completed Daelyn Sweater (by Isabell Kraemer) and got started knitting on it again between naps. Last week I finally finished it. Oh, my goodness. What a wonderful sweater. It kind of looks like a sweatshirt…
See what I mean? The ultimate comfy weekend sweater. This baby is knit from the top down and there isn’t a seam anywhere in it. I decided to knit the XL size (43.75 inches) so that I would have at least 6 inches of positive ease; because of the garter stitch shaping it hangs really nicely and is actually kind of flattering. This view of the sweater is pretty boxy looking, so I decided to try to get a selfie…Do you know how hard that is? Ugh! Still, this gives you a better idea of how the sweater actually hangs. Once it is on it doesn’t look wide and boxy anymore because of the garter stitch side panels. My swollen fingers are due to the systemic sclerosis flare. I want my drugs back!!and just check out the raglan sleeve and the back view! The garter stitch in the back makes it really comfy and stretchy. The back of the sweater is a little longer due to short rows shaping which also helps make it hang nicely over my rear end. 🙂Did you notice the cat hair on the sweater? Yep. That’s a thing as cat help and yarn chomping happened fairly frequently as I knitted… MacKenzie purrs and kneads like a madman (madkitty) in these sweater attacks so it is hard to heartlessly chase him off. I think that he especially liked the Brooklyn Tweed Shelter yarn that I used.
I have to give a shout out to this yarn. You almost have to work with this stuff to believe it; it is soft, squishy and very light weight. My finished sweater is soft, warm, comfy, looks and hangs like a bulky sweater but weighs very little. It is almost a shock when I lift it to put it on. There are little bits of veggie matter in the yarn, but I think that is because it hasn’t been over processed. It was fairly easy to pull them out while I worked.
When I got ready to knit my sleeves I began to panic about running out of yarn. I ordered two more skeins online that were from another dye lot. I blended the new yarn in by knitting every other row for 8 rows (it did happen on the sleeves..) and you absolutely can’t see the change in yarn. I could have just skipped the blending. How’s that for quality control! Here are the Ravelry notes for my project if you want more info.
So, here it is whole month late but I am starting to think about my new projects for the year. Lots to do. You weren’t very nice to me at the start, 2016, but let’s see what we can get going now. Behave yourself!!
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.
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.
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.
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.
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.
Look how great this rose looked last spring. It should be a wonderful time of year for me, but…
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.
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.
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!
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.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:
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?
Beads! This is the same yarn in a version with some fun and glitz. The picot CO was new to me. Here’s the link to an online tutorial that does it the same way that I did. 🙂
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.
I’m finally on the last section of mesh lace. I’m pretty nervous about the size of the ball of yarn; it’s clear that there isn’t enough to finish the shawl as the pattern is written. I’m weighing that ball fairly often so I can figure out when I need to stop knitting lace and switch over to the last garter rows and the BO. I’m giving myself about 7 grams to get the job done. Here’s a close-up of the pattern. I learned some new things as I knitted this shawl. The YO’s in the garter section are hidden by knitting in the back loops on the wrong side rows. Who knew that was a thing? I’m liking how it looks, however, Here are my project notes on Ravelry.
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…
I spent most of the day thinking about that. I worked on the loom (weaving is right around the corner!), cleaned the house, cooked a yummy dinner, and pondered the relevance of rare diseases throughout the day. For a while in the late afternoon I almost started writing, but ended up knitting instead. Now it is evening and I think that I might be there.
Yarn, Books & Roses 