The Saturday Update: Week 10

This week I have been really busy with appointments and testing. I wrote about the first round of doctor’s appointments in this earlier post (The Blue-Lipped Zebra Report) where I also showed off my fabulous monster orchid in bloom and a pair of finished socks. I finished the week with an echocardiogram and two MRI tests. In the week when COVID-19 arrived in Colorado I walked into 4 different medical clinics feeling like I was walking into the lion’s den. Hopefully there will be some good results soon. Next week it just keeps going as I have two more tests scheduled; after the test results arrive I have appointments with two of my doctors again. Whew!

Knitting

Knitting took a hit this week as I spent too much time driving around completing medical tests to get much knitting done, but I did make some progress on the Pebble Tunic.

Sigh. This is the part of sweater knitting that takes out the faint of heart. I’m knitting down the body of the sweater, and even though I’ve added almost 6 inches of knitting, it feels like I’m not getting anything accomplished. In about 4 more inches I get to add the pockets. Yay! Something different.

I’m knitting the tunic holding a single ply fingering yarn with a silk-mohair lace yarn, and knitting with the two yarns is just a joy. So soft and yummy feeling. My project notes are here. I also started knitting a copy of my son’s kitten Jonesy, which is really fun and involves even more yummy mohair. Check this out.

Once again I’m using the pattern Cat by Claire Garland. If you would like to see what yarns I’m using you can check them out on my Ravelry page.
I’m going to use some embroidery to add more color to the face later (stripes and freckles) but I think that I’m doing pretty good on the color match. I can’t wait to start knitting the stripes in Jonesy’s body.
Garden

All of this medical testing is a little traumatizing: long drives to cold rooms where I battle to control my Raynaud’s while the tests are being run. Today I drove 2 hours to be trapped in an MRI machine for 90 minutes. One hand was solid blue when I got done, but as soon as I got outside into the warmth it pinked up again. After fun like that I need a little reward, don’t you think? After leaving the clinic I drove straight to the nursery and bought my African violet some little buddies. Aren’t these just the cutest?

Aren’t these the happiest guys ever? I found the little pots on the discount shelf: perfect!!

These violets are really small and were next to the miniature plants section, so I’m not sure exactly how big these plants are going to be, but they are blooming like crazy so I have high hopes for these little guys. My original African violet is the one in the background.

Books

Another sigh. I’m still reading the same book, The Overstory by Richard Powers. I’m further along with the story, and, as I anticipated, the cast of characters (all people with a relationship with a tree), have met up and are now activists trying to save the old natural growth forests in the western US. I don’t want to spoil anything, so I’m not going to share any more details of the plot, other than I am fascinated by the work of Dr. Patricia Westerford,  one of the characters in the book. She studies mechanisms of communication between trees, and in particular, is studying Douglas firs in one part of the book. Plants are crafty organisms that use lots of mechanisms to respond to the environment. They use hormones to control their growth, and they are able to track the hours of the day (or maybe it actually is the night) so that they bloom at the right time of the year. Of course they are communicating with each other!!

Look at these female cones on my Douglas fir tree. They are kind of goofy looking with those bracts hanging out between the cone scales. They have the only cone like that in our nearby Rocky Mountains. The needles are strange too… they have little tiny stems on them like leaves.

I have a Douglas fir growing in my backyard where I have been babying it for a few years as the honey locust tree next door is outgrowing it and putting it into shade. Poor Douglas fir. They are kind of misfits in our mountains, having no other close relative, aren’t really fir trees at all, and are notorious for pulling a lot of water from the ground. When I attended a forestry workshop in the Denver montaine watershed I was told that the only good Doug is a dead Doug… hey, Dougs need love too! Some of the trees in that forest are turned to sawdust by enomous grinding machines to both thin the forest and reduce water use; some of those thinned trees are evidently Dougs. Douglas firs are really important timber trees, which is why they are in this book, but they aren’t beloved by the biologists who are making sure Denver has enough water in the coming year. Luckily for my Doug I am hiding it from the Denver water board and giving it all the water that it wants. Sadly, it is the only one around and has no other Doug tree to talk to. I wonder if the honey locust ever chats with it?

Have a great week, everyone!! Read a little, knit a little, and garden like your heart can’t live without it!

Okay, I just had to show off the monster orchid again. I feel happy every time I see this big guy. This is why it is good to garden. 🙂

The Scleroderma Chronicles: Invisible (Star) Wars

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

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

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

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

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

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

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

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

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

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

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

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

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

Cat

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