
Last night was the start of the Olympics in Rio, and I cast on the start of my first in a set of seven happy shawls. Think I can get this done before the end of the Olympics? Let the race begin!

Last night was the start of the Olympics in Rio, and I cast on the start of my first in a set of seven happy shawls. Think I can get this done before the end of the Olympics? Let the race begin!
Okay, July was a month that I am glad to see go out the door. I did have some great moments in the month; my sister and niece came to visit, I worked at the summer camp at Alta Vida Alpacas, and I spun my friend Deb’s beloved Jake dog into yarn. Good highlights!

On the flip side, I lost a war with an invasive weed in one of my gardens and my autoimmune conditions went into high gear. For the first time ever I was unable to sleep due to pain (what is up with my joints and muscles?!), gastritis returned after being good for two years, my Sjogren’s flared (!!) and my lips turned blue. Ugh. I blame the heat and the sun.
Now it is August, I’m on oxygen full time, meds have been changed, and I’m in need of a little cheer. Shawls, I need shawls!! The way things are going right now I want to be wrapped in color. Shawls will give me color, texture, lots of mindless knitting, and defiance in the face of medical adversity. I hit the stash, printed patterns from Ravelry, made my shopping list and when I went on the knitting road trip with my peeps last week I scored everything I needed. May I present to you, Seven Happy Shawls…

How is this for cheerful defiance! I was really torn about which one to start on, but I’m leaning towards Antarktis.

More defiance. This should keep me going in good cheer until the end of the year. I’m torn about the order to knit them; they are all just too yummy for words.

All right August, I am ready for you. Let’s go!!
Notes:
Every Wednesday I go to a local yarn store to knit with a group of ladies who have become my friends. Okay, let’s be honest, they are one of my main support systems. I love the ladies in this group, and last week we all headed out on a road trip to the yarn stores of Fort Collins, Colorado. We visited three stores and treated ourselves to a fun lunch. It was a great (if a little exhausting) time, and it is always exciting to explore new yarn shops, but one store in particular was a huge hit with me.
My Sister Knits is located in the carriage house behind a lovely home on a street shaded with mature trees. We drove by twice before we figured out that there was a discrete sign under a tree out front; the low profile might be due to its presence in a residential section of the city. I really don’t know about that, but it is totally worth the extra time to locate it! To get to the shop you walk through a bright and inviting gate to the side of the house and…






So I got silly and bought yarn. I bought some of the kits that were shown, the yarn for some shawl patterns that have been waiting patiently in my Ravelry shopping cart, and some yarn that was too beautiful to just leave sitting on the rack. I have put together the kits to make seven new shawls (lucky seven… can you feel a new post coming on?), and launched into some small projects that are rich in color and learning. Here is the one that I started first.



Today it is cool, overcast and threatening to rain. The Olympics starts tonight, and I have lots of yarn on hand and visions of shawls dancing in my head. Forecast: major knitting.
What a great road trip!
August has finally arrived; the worst of the heat is almost over and the monsoon is right around the corner. The cicadas are buzzing in the cottonwood trees, and there are birds everywhere. Trees love August here in Colorado; more water and cooler temperatures. My ash tree, beautiful, pampered (he gets an injection every spring to protect him from emerald ash borers, a particularly nasty tree parasite) and greatly loved (well, he provides afternoon shade and is totally rocking his last prune job), is the star of today’s main events. Take it away ash tree!!





Notes:
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I’ve really been dragging lately. I’m out of breath, my arms and legs just don’t want to go, and every now and then my chest hurts. This has been going on since around the first of the year, and so far my pulmonologist and rheumatologist haven’t located a definitive cause. It’s a scleroderma thing, they tell me. I’m on oxygen overnight now, my immunosuppressive drugs have been increased, and I’m just maintaining.
That was until I noticed that my lips were blue one morning while combing my hair. Blue lips? That can’t be good. I did some google searches, scared myself silly and then began to check the mirror more frequently during the day. Two weeks later it was pretty clear that I was rocking the blue lip look every time I came up the stairs. I bought a pulse oximeter, and began to record my blood pressure and oxygen levels throughout the day. Finally, admitting to myself that this was a true phenomenon, I called the doctor.
Of course everything went out of control as soon as I made the call. Now I’m in the middle of testing and doctor appointments. Monday was an especially ugly day; I flunked the 6 minute walk test in 2 minutes flat and was put on oxygen in the hallway. Darn!! It’s a sure thing that I will be lugging an oxygen tank around in a backpack in the near future as soon as I finish the current round of doctor visits and testing. My next doctor appointment is Tuesday, and I think I won’t be able to put off the oxygen trolls any longer after that.
So how have I been handling all of this? Well, when everything is falling apart around you, it is best to just knit, knit, knit! Seriously, knitting is positive, productive, meditative, never talks back and consumes very little oxygen. Perfect! I’ve been just cranking out my Solaris shawl over the last week and the end is now in sight. It is going to be beautiful. Check it out!



So, next week should be a big one for little ol’ me. I’ll be seeing my primary doctor for a breathing needs evaluation, hopefully I’ll be saying goodbye to the blue lips, and my Solaris shawl will get finished up.
I’m not sure how this is all going to turn out, but I’ve got a big shawl queue all ready to go.
It is good to be a knitter!
The weather has really warmed up and stabilized this week; sun, heat and no thunderstorms; just what I needed to make my aching muscles and joints behave themselves. This week has been a good one and I took to the backyard for most of the afternoons. There’s a lot that can be accomplished outside. Let me take you on a little tour of my days.

The shade of my locust tree covers the lawn swing and a couple of the gardens. What could be better for a person with a latte and an incredibly good book?

I’ve been consumed with the Justin Cronin novel, The City of Mirrors. Oh, my goodness. What a well-written, tightly-crafted book to spend the summer afternoons with. I read the first two books in this series and I wasn’t completely sure that I wanted to dive into a book of over 700 pages to learn the fate of mankind in their battle against the Zombie apocalypse, but the reviews made me take the leap and I pushed the “buy” button on my NOOK. Good decision. I keep highlighting passages that are just so wonderful I want to savor them later. I usually race through good books but this is one that I am stretching out so the experience will continue. The perfect June book.
After an hour of reading the knitting begins. Check out my progress on the Solaris shawl (by Melanie Berg).


I’ve also taken some weeding breaks. The little roses in my tea rose garden are now blooming, and I have gotten the weeds pulled out of another couple of patches. There are a lot of weeds, but everything is getting ready to bloom so I’m pretty motivated to keep at it.



Towards the late afternoon as things really warm up I water the flowers and gardens and head inside for food, the news and more knitting (bet that was a shock, huh!) Even the cats are ready to come in by that point. OK, they get kitty treats for coming in, but they would probably come in anyway… especially since I just watered all of their favorite plant nests. 🙂
Outdoor operations have ended for the day.
Tomorrow I am going to attack another garden!
Have a great weekend everyone!!
Here is my crazy week with a lot of picture support.

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!!







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.
Wow, the week just sort of rushed by without me getting much of anything done. Mostly I have been going to doctor’s appointments and getting tests done; lots of energy being drained away without a single knitted object to show for it. What is up with that?!! This week I didn’t do any rocking; it was more like getting rocked by the week this time.
Still, there have been accomplishments. Check out the finally finished slippers that I made from the Dream in Color kit I bought a few weeks ago:



But mostly I spent the week in doctors offices or in bed reading my latest series of compulsive reads: the Cat in the Stacks series by Miranda James. They are fast cozy mystery reads that feature a murder-mystery solving librarian with a giant Maine Coon cat sidekick. I enjoy the books, but it kind of bothers me that the cat on the front cover, who is excessively handsome, is not really looking all that much like a Maine Coon to me. I kind of know about this because Yellow Boy is a Maine Coon mix.



Still, a small detail. Perhaps the artist had a particularly well groomed cat for the model. The mysteries are fun and I am chomping right through them. There is a housekeeper named Azalea in the books who takes care of the house cleaning, shopping and leaves yummy food in the fridge for people to eat when she isn’t cooking up killer breakfasts for them. She even does the laundry. I need Azalea. Seriously, maybe one of the doctors can write a prescription for Azalea for me. 🙂
I hoarded up energy so I could go to the Interweave Yarn Fest on Friday. What a trip! What a great day! But that, my friends, is another blog post.
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.

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.

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.
Life is good.
It is March in Colorado, which means we are in the midst of endless weather adventure. This last week we experienced a march of weather fronts that came through the state with wind, wind, and more wind. It was sunny but still miserable for cats and people.

I was pretty miserable myself. Usually my joints are OK, but this week all of my tendons took to hurting. Gee, there are a lot of tendons in a human body! Not only did my hands and wrists hurt, but so did my knees, hips, feet… well, pretty much if it moves, it hurt. I finally had to resort to pain killers and spent a lot of time in bed this week.









That’s right, it is now spring. We are in for weeks of chaotic weather, but the plants will be coming back to life, the birds will be arriving soon, and I can’t help but be happy. Today my hands feel fine, I’m going to heat up some soup for dinner using my new bowl holders, and then I have a beautiful shawl to knit.
It turns out that this was a pretty good week after all.