The Saturday Update: Week 1, 2021

Well, this was an exhausting and fraught week, wasn’t it. I mean, I struggled to knit the week was so bad, and then if that wasn’t enough I logged some personal drama myself. As in…

Yesterday I couldn’t walk on my excessively ill-behaved legs!! I hit bottom after a couple of days of noticing that I was having more breathing issues and sporting blue lips again. What is up with this, 2021? Did 2020 leave you some type of User’s Manual? Just drop that sh*t in the nearest trash can and behave yourself!!

In a normal year I would have called for help and gotten myself into a medical center, but in this year I stayed in bed on oxygen, drugged up, and snacked on the crackers and bai drinks that I keep upstairs. It’s got to be inflammation, I told myself, so I’ll just sleep this off. Yep. Today I’m up and managing like nothing happened. I blame the weather… I absolutely blame 2020 for lingering bad vibes… I blame too many trips in and out of the cold garage…

Look at what is happening in my indoor garden! The new monster orchid has recovered from its trip through the mail and is now looking pretty darn good.

No week or year can be absolutely bad, right?! There was also lots to be happy about. I had great packages on the way to me (squishy mail and the 23andMe DNA kit from my last post), a flourishing indoor garden, two really engaging books to read, and my goodness (!!) the Secret Life of Cats (and dogz) shawl is about as cheerful as a piece of knitted work can be. I’m still thinking about my resolutions for this year (but getting my Covid-19 vaccine is at the top of the list), so I’m just going to ignore all the newsworthy events of the week and jump to what was up at home.

Knitting

I have ONLY ONE knitting project going on at the moment, but it is a doozy. Look at this explosion of color wonderfulness!

I’m now passing the halfway mark. This baby is going to be huge, but wonderful. I wear a lot of black so this will absolutely brighten things up when I wear it.

I totally lost control and ordered yarn for myself last week and I’m practically dying with the need to cast on more projects. Maybe just a little pair of socks? I know that I need to stay away from sweaters, but wouldn’t a cowl be a nice little things to have stuffed into a project bag… I have new yarns with names like “Naughty Chair” and “Troublemaker” that are insisting that I should cast them onto needles as soon as possible. Little projects like that are easier to manage when staying in bed all day with a cat sleeping on you… Do it! Do it! Do it! the yarns chant from the yarn stash…

Garden

Hannah has been spending a lot of time in the indoor garden, and I have to admit that it seems to be doing well even with her knocking plants over and using some of them as toys.

Hannah especially likes the owl in the garden that is supposed to be watching over her… yeah. I had to evacuate the owl to a safe location this afternoon. Several of the jade plants have been staked this week to help prop up the branches that Hannah has shoved over. I think that the problem is that Hannah is growing quickly and spaces that she previously moved through easily are now too small for her so… plants get knocked around, lamps knocked down, and worst of all, she misses some jumps and falls off of ledges that she used to have no problems with. Suddenly that little window sill isn’t quite big enough! Anyway, back to the garden. One of the orchids is blooming and another is putting out a stem, so the winter is cheerier than I first expected. The African violets are still putting out lots of new buds, so the craft room, where the garden is, is currently my happy place.

Books

I started two new books this week and am still reading them, but both have completely captured my attention and I’m planning on finishing at least one of them before the weekend is over.

I’ve been caught up in The Huntress and really enjoying it but yesterday in bed called for an audiobook so I started the second book, To Sleep in a Sea of Stars. Now I have a real conflict as I like the Paolini book so much I want to cast on a new knitting project and just listen to it, but the Kate Quinn book is also excellent and I am so close to finishing it I should buckle down and just finish it off… but I can’t knit as easily while reading a paper book. Life is full of these trade offs. Obviously I should finish the paper book as fast as I can so that I can cast on a pair of socks… in blue yarn… with gold sprinkles… the name of the yarn is “Cloud Atlas” which would be nice to knit while in a sea of stars, don’t you think? That’s the plan.

“Naughty Chair” and “Troublemaker”, don’t worry. I haven’t forgotten about you. I happen to have 3 little project bags and lots of needles!

Have a great week, everyone!!

Please stay safe.

Read a little, knit a little, and garden like your heart can’t live without it.

And wear your mask!!

Footnotes:

  • “Naughty Chair” and “Troublemaker” are produced by Hue Loco.
  • “Cloud Atlas” is produced by Uschitita Fiber Art.
  • I was officially accepted into the Systemic Sclerosis Study being conducted by 23andMe this week and they have mailed the DNA collection kit to me.
  • I have stockpiled the yarn to make three new sweaters!! They should make it harder to buy yarn online, don’t you think?

The Scleroderma Chronicles: Coming Full Circle

Systemic Sclerosis is a rare, chronic, progressive, and incurable autoimmune disease that is included in the family of rheumatic conditions. It is characterized by blood vessel damage and the scarring and thickening of skin due to excessive collagen production (fibrosis). The internal organs can also be damaged by inflammation and scarring: the digestive tract, heart, kidneys, and lungs.

There are two main types of systemic sclerosis: diffuse and limited.

I was diagnosed with limited systemic sclerosis 6 years ago.

Hannah: Do you like my circle?

The Circle Starts: In high school I developed a mystery illness that involved intense itching, lots of rashes, sensitivity to sunlight, and swollen digits. I was a mess. It went on for a few years and then the worse of the symptoms faded away.

First Quarter Circle: In my mid twenties I was a researcher working on a scleroderma project for the Division of Rheumatology at the University of Colorado Health Sciences Center in Denver, Colorado. The principal investigator that I worked for was interested in isolating the targets of the autoantibodies that scleroderma patients made; if we found the actual proteins that the antibodies characteristic of this autoimmune rheumatic disease were targeting we would be closer to understanding what they did, and eventually closer to understand the disease process of scleroderma. Let me be clear here: my boss, Dr. Angeline Douvas, was the brains of this little research outfit and I did most of the bench work.

One morning Angie had the hot idea that we should see what happened if we did an anti-nuclear antibody (ANA) test on the polytene chromosomes of the fruit fly Drosophila, a common lab experimental animal. We knew that the antibodies produced by the scleroderma patients were sticking to the chromosomes in the nucleus of cells… what would it look like if we checked this test on the chromosomes of fruit flies which were enormous structures that were easy to look at under the microscope?

After staining we could see that on the entire chromosome a few distinct bands were stained: only a few genes were targeted by the antibodies of the scleroderma patients. What was the function of the genes, and what were those proteins, the clear targets of the antibodies made by these scleroderma patients, doing? Something important that was linked to this disease that we call systemic sclerosis (scleroderma). How was all of that tied to the damaging fibrosis going on in these patients?

Here’s the other interesting conundrum that we kicked around: what changed in these genes/proteins that made them trigger the immune system to make antibodies? There are lots of things that can change genes and the proteins that they make. Things like radiation, chemicals, environmental triggers, viruses…

Hannah: Viruses?! The Kitten Mom and I spend all our time at home hiding from viruses!!!

Second Quarter Circle: Now in my 60s, and diagnosed as a scleroderma patient myself, I began writing letters to my congressman asking him to support the National Commission on Scleroderma and Fibrotic Diseases Act, a bill which would coordinate and organize resources to study the process that is involved in the formation of scar tissue in scleroderma and other diseases/conditions. Two summers ago I met with a representative of my congressman, Jason Crow, with other scleroderma patients to make our case. Scleroderma is special, I argued, because our antibodies are a tool that can be used to unpack the process of fibrosis. Representative Crow did support the bill.

Hannah: Now, are you ready for some really crazy stuff? Hang onto your catnip mice, this gets a little wild!!

Third Quarter Circle: It is 2020 and Covid-19 has arrived. Early on we learned that this is a serious virus that causes an extreme immune system response in some individuals that is life threatening. There is severe lung involvement, blood clots, scarred lungs, injured hearts, failing kidneys… this is no joke if you are already dealing with all of this, so I and other scleroderma patients are avoiding it like the plague and retreating to our online support groups even more than usual. We share observations and experiences in these forums, and it wasn’t very long before we started to notice that these severe Covid-19 cases seemed to be awfully similar to severe systemic sclerosis. We laughed about “Covid Toes” since dealing with blue fingers and toes is a daily struggle for us. Then the news reports about Covid-19 long-haulers started to emerge, and we all started to say to each other… wow… fatigue, brain fog, muscle/joint pains, lung and heart problems… sounds a lot like what we deal with… Then some people started to arrive in our support groups who were newly diagnosed scleroderma patients who were also Covid-19 long haulers. Now every week new people, shocked and frightened by their life-altering diagnosis of systemic sclerosis, are showing up in our forums. “Gee, there are a lot of new patients arriving,” someone wrote last week…

Unbelievable, right? I decided to hunt around online and quickly found that there were a number of reports about Covid-19 and systemic sclerosis. I discovered to my shock that people with severe Covid-19 disease do share a lot of documented clinical features with severely ill diffuse systemic sclerosis patients, and there is a connection between Covid-19 and rheumatic autoimmune diseases. When there was an article in the New York Times reporting that some Covid patients were developing autoimmune disease it caught my eye, so a little more work online found this nicely written overview by the Global Autoimmune Institute that listed specific research reports and the autoantibodies being discovered in Covid-19 patients and Covid-19 long-haulers. There in the reports are listed the same, exact autoantibodies that are the specific hallmarks of my two autoimmune diseases, systemic sclerosis and Sjogren’s Disease. 2020, shame on you. This is really, really bad, even for you.

All of a sudden it is really important to understand fibrotic diseases and how to reverse the damage caused by Covid-19.

Hannah: The Kitten Mom feels like she needs to do something about this!!

The Circle Closes: The genome sequencing service 23andMe has launched a genetic research study of systemic sclerosis patients. They are screening and accepting 1000 diagnosed patients who will donate their DNA for research into systemic sclerosis. I’m pretty sure that this effort to collect more information about the genes of systemic sclerosis patients is in part driven by the urgent need to deal with an emerging flood of new patients with fibrotic organ damage due to Covid-19 infections. Tonight I completed my application to submit my DNA to the study and to participate in all their additional data collection about my disease. Remember those few, distinct genes lit up on the fly chromosome? “Go get ’em, boys!” I muttered to myself as I clicked the submit button.

Today there were 225,558 new cases of Covid-19 in the US and 3,499 new deaths.

How many of the Covid-19 survivors will eventually be dealing with a chronic, progressive, and incurable autoimmune disease?

Wear your masks, people!!

Wednesday Afternoon Update: I’ve been accepted into the research program and they have already shipped my DNA collection kit to me. Hannah is so excited!!

Footnote: Did Angie and I find a protein using the scleroderma patients antibodies? Yep. We did.

The Saturday Update: Weeks 49 & 50

What a shock to write down week 50! I have to admit that it is kind of a thrill to get towards the end of this most eventful (and not in a good way) year at last, but it is a reminder of all that I need to get done before the holidays are upon us. I’m trying to get presents finished in time to send off for Christmas and then there are my challenge goals on Ravelry and Goodreads. My Ravelry challenge goal is to get 30 knitting projects done this year and I have only one more to go! Piece of cake. I also wanted to get 50 books finished off this year and that goal is getting close with only three more books to go. We’ll just pretend that there weren’t any plans for the garden, okay? Between heat, smoke, my unhappy lungs and the pandemic there just wasn’t much progress there.

I’ve been reflecting on the year now that we are coming up to the end, but even more so on the last 9 months. I started this year struggling with shortness of breath and sporting blue lips; I felt a little desperate as my symptoms weren’t being taken seriously by my physician team and I pressed for more testing and answers. Exactly 9 months ago today my pulmonologist called to tell me that my oxygen levels were too low overnight when measured in a sleep study: I needed to go on oxygen when I slept. The next day the oxygen concentrator came just as I finished laying in groceries for a few weeks at home alone. By the middle of the next week we were in lockdown due to the COVID-19 outbreak in my state and little Hannah was born. Three months later I was able to adopt Hannah in a contact-free adoption and today we are rocking the Stay-at-Home lifestyle. This month Hannah is acting like a teenager and I’m feeling a lot friskier myself as many of my symptoms have faded into the background and my blue lips are rarely seen when I glance into the mirror; my latest bloodwork shows that I am maintaining, and I’m meeting next week with my rheumatologist (remotely) to find out what to do about other symptoms that have cropped up. Outside the world is on fire (the COVID numbers are horrific and the drama associated with our election continues…), but in the little world that I’ve built for Hannah and I things are good.

Knitting

I am trapped on Slipstravaganza Island wandering around in the chevron wilderness. I just love this project and worked steadily on it for a week before I had to call a halt to work on Christmas-related knitting. In my defense, the rows are now over 900 stitches each at this point, so the narrow garter stitch chevrons take a few hours to complete. It will be fabulous when it is done and I’m hoping to get back to it as soon as my Christmas presents are in the mail. Wait until you see this thing blocked!!

I love the colors in this shawl so much, and what you can’t see is that there is silk, yak, and cashmere in that yarn that makes it just a joy to work on. Soon, soon, soon it will be done… but not this week.

I can’t show off any of my other knitting projects because… they are secrets! Hello, Christmas presents… I have been working on other undertakings that won’t be named since I also can’t show them off, so… how about I talk about cleaning my yarn stash? I pulled everything out this week to get yarn reorganized again by types, sources, and colors and then put it all away neatly in bins to keep it safe from kittens and moths. Of course Hannah helped me with all of this; if you imagined Hannah racing through the house with a skein of alpaca yarn in her mouth you nailed it!! Then at the end of the clean-up the great “Where is Hannah?” search began…

Do you see her?
There she is! That quilted wall hanging was rolled up before Hannah found it…

Books

I just realized that the color is off on both of my pictures because my Kindle switches to the blue filter in the evenings to help me sleep. Hey, that really does work! If you don’t already know about this, try it out.

I have been reading the Cormoran Strike books by Robert Galbraith (J. K Rowling) since the series started, and I just love the complexity of the characters. In this book, Troubled Blood, Strike and his partner Robin are hired by the daughter of a long missing woman to discover what happened to her. It has always been supposed that she was the victim of a serial killer who was active at that time, but the daughter longs for a definitive conclusion, and Strike agrees to take the case. Over the slightly more than a year that Strike and Robin work this and other cases at the agency they also deal with their relationships with old lovers, family members, each other and ultimately, themselves. I have to be honest here… Strike and Robin are both damaged goods, but during this book they both confront some of their demons, move some things into the past, and begin to gain balance and perspective that makes me eager to get the next book in the series. Oh yeah, they also solve the case!

After polishing off Troubled Blood I blindly started The Last of the Moon Girls without any expectations because… I’m a little ashamed to admit this… it was also an audiobook and I needed something to listen to while knitting. To my surprise it is also a book about an old murder, also has a main character who was “different” from everyone else growing up, and who also has a very fraught relationship with a dysfunctional parent. Cormoran Strike Deja vu!! I’m enjoying this book as I listen to it, knitting away on my mystery presents, but I have to say that it isn’t as rich and complicated as Troubled Blood was. Actually, that is a good thing since it is an audiobook and I would have trouble following multiple investigations and a huge cast of characters in action; as it is this book is perfect for the task at hand as it has a straightforward storyline that keeps layering in additional characters and plot twists in an engaging manner without too many games. I kind of think I know who the killer was, but I’m not absolutely sure…

Must keep knitting and listening!!

Have a great week, everyone!!

Please stay safe.

Read a little, knit a little, and garden like your heart can’t live without it.

And wear your mask!!

The Saturday Update: Weeks 47 & 48

Wow. We’re getting kind of close to the end of the year. These last two weeks just kind of flew by for me as I spent most of them either 1) asleep or 2) knitting. That’s right. I am drowning in knitting projects, dreaming of color, yearning for more yarn, and pretty much out of control. My two autoimmune diseases, Sjogren’s and systemic sclerosis, also decided to be out of control for several days as I slipped into a flare, loaded up on more drugs, and spent days in bed mindlessly listening to audiobooks that I can’t remember now and watching television that I normally would never consider… last Sunday the idea of a shower was so exhausting that I just stayed in bed all day and watched Russian figure skating. I don’t want to brag or anything, but this may have been an historic low for me… if I end up watching monster truck demolition derbies I will definitely have hit bottom…

It was also Hannah’s 8th month birthday last week. Not the best light for the picture… do you know how hard it is to get a kitten to pose with you?

In the meantime I have been making lists of things to do in my journal. Good heavens, I am going to need a few more weeks in the year. On the other hand, since we are talking about 2020, it is probably best to just hustle it right out the door as soon as possible and ignore the list!

Anyway, I magically emerged from the flare early this week and I’m back to knitting like crazy and dreaming of new color combos to put together some additional projects. Maybe I ordered some more yarn too. Hey, things are getting crazy out there is Covid-19 land, so best to stock up, right?

Knitting

The next knitting MAL that will be run by Sharon from Security (Casapinka‘s poorly paid and overworked staff member who is currently outraged about the mouse that ran through the palace in an episode of The Crown and is also hiding out from the ringworm that has been brought into the house by a newly acquired staff member joining the Casapinka operation… ) is the highly anticipated Secret Life of Cats (and dogz). I have the yarn, I bought the pattern, and I am waiting with great anticipation for the first instructions to drop on December 1st. Oops. That is like… NEXT TUESDAY!!! I am in the middle of Slipstravaganza (Stephen West), and it is growing into an absolute monster. Must. Knit. Faster.

I am just driven to get this shawl done. I absolutely love the way the colors and textures are working out as I knit the shawl. I did hang back on this project and waited for other people to knit and show theirs off before I cast on; the final product is just stunning and I am motivated to get as much done as I can before Secret Life arrives next week. I don’t think that I will get it all done in time, but hopefully I will be into the final clue soon. It is now too large to show off well on the needles so the big picture will have to happen after I get it all cast off. I understand that the cast off takes about 5 hours… this is the dark side of getting into a MKAL with a lot of other chatty and supportive knitters. 🙂

Meanwhile I did get a few other things done in the knitting world. I finished up my socks made with Hue Loco yarn (colorway Elixir) and wound up the yarn for the next sweater that I want to make. Oh. About that sweater. I am going crazy with the color combos. I wound the yarn that I first chose, and then decided to switch to a warmer fall colored pinkish yarn. Sigh. What do you think?

The sweater is Solvi by Jennifer Steingass, and that picture to the left is her copyrighted photo that I swiped off Ravelry. The soft black yarn will be the sweater body, and the blue Hue Loco was my first pick for the contrast, but I’m thinking that I will be a lot happier with the pinkish Six and Seven Fiber yarn on the far right. The pinkish yarn is called “Forever September” which kind of clinched the deal for me. Best time of the year, right?! All inputs gratefully accepted on my color choices. I also have a fabulous red yarn with black flecks that could be used. I’m drowning in color decisions, people!!

I almost forgot to show off the socks. Here they are… Tada!!

Garden

Hannah and I are are spending more time working with the indoor plants where she excels as a helper. Did I mention that she is shredding the fronds of my palm and carrying the bits that she is able to remove from the plant around the house to use as toys? Still, it is a huge plant and if she is happy, I’m happy, and even the palm seems to be happy as it has started growing two new fronds since Hannah started giving it so much love.

Most of the plants are putting out new growth now and there is very little blooming going on except for the orchids that I brought home from the grocery store. The African violet is getting huge, and the jade plants are putting out lots of new growth in response to the pruning that I gave them last summer. My jade plants don’t bloom, but boy do they respond well to pruning!

Reading

I listened to two silly military science fiction books this week that stole plot elements and characters from at least a half dozen other books in the genre and made endless references to the game of chess, movies, and other science fiction books with reckless abandon. If you have been steadily reading science fiction for over 50 years like I have then you get most of the jokes and catch the popular culture and movie references, which made the dialogue a little snappy with the inside jokes, but it also seemed like the authors were two guys showing off their credentials to help me overlook the fact that they weren’t all that original in their thinking. Anyway, the pace was rapid, the story line inventive (well, if you scramble enough plots together you get lots of twists and turns, right?), and the best part was if I fell asleep and missed a couple of chapters it was no big deal. 🙂

I think that I should allow these books to remain nameless. Just another chapter in my flare last week!

Well, that’s it.

Have a great week, everyone!!

Please stay safe.

Read a little, knit a little, and garden like your heart can’t live without it.

And wear your mask!!

Surviving the Stay-At-Home Order

So, here we are.

I don’t know how everyone else is doing, but here in my state we were just ordered to stay at home for another 2 weeks. At first they asked us nicely to socially isolate as much as possible; now the gloves are off as things are getting more serious. Many other nations have been dealing with lockdown situations for longer than we have, and for some of you this situation may be coming. Times are really getting tough: an invisible enemy, stress, grief, loss, and economic uncertainty. And now you need to stay home for who knows how long…

Well, as it turns out I have some experience with staying home in self-isolation. I’ve been social distancing for months now; it started last summer when I switched to “night shift” to avoid sunlight, and then I doubled down when the flu season started. Hey, sunlight activates my scleroderma, and I was blue-faced and panting for air, so catching the flu was a really terrifying thought. Rats! I contracted the flu anyway, and just as I recovered I became aware of this looming new coronavirus…  I was motivated to self-isolate, which may be or not be the case for you, but I do have some insights and strategies to pass on to anyone who wants them.

Okay, I just want to acknowledge that this is really, really tough. I absolutely understand that my situation, under no circumstances, should be confused with the stress of a pandemic and the coinciding economic repercussions. Still, in case any of this helps, here it is.

  1. Make lists. Lots and lots of lists! It helps so much to bring some internal structure and purpose to your days. I make lists of things to do each day, and more lists of long-term projects that I think I might like to tackle. Make lists of blog post ideas. Add new things that you think of to your lists, and reorganize them as needed. Keep yourself going, and make plans for the days to come. Really, it helps!

    One of the projects that I put on the long-term list is to knit at least one sock from each of these books. There are a lot of technically challenging socks to choose from: should keep me busy, huh!
  2. Structure your time. When I lost my work-day structure I just didn’t know what to do with myself at first; creating a new structure helps with that. Plan a daily walk, watch a set show each night on the television, create blocks of time for specific tasks (like knitting!), do a puzzle or read each day; don’t forget to stick in yoga, meditation, or journaling if they appeal to you. Just don’t spend all day on one thing that will be finished at the end of the day. It actually is better to chunk multiple tasks over several days so you won’t hit a dead zone.

    Right now I am working on this quilt every afternoon for a couple of hours.
  3. Exercise and get sunshine. Unless of course the sunshine will make you sick. I can’t emphasize how calming and peaceful some time outside can be. Even gardening inside helps. Get some exercise! That can be one of your daily blocks of time, even if it is only your physical therapy and the number of steps daily on your Fitbit.

    Spinning is exercise, right? I thought that an hour treadling my wheel was a good idea. My hip begs to differ…
  4. Create zones in your home to keep you moving around. Right now I have transformed the dining room into a quilting area, and there is a reading zone in the living room with a weighted blanket (and my monster orchid) waiting for me. I have a desk with my computer in the room that used to be my office, and I have a knitting area all set up. The trick is to keep moving, and link your movements to your activities. Maybe staying on the couch works for you for awhile, but it is not a good long term plan, people!!
  5. Plan and make nice meals for yourself.  Oh, look! Another list! Does anyone have any yummy recipes that I can cook in a crock pot?
  6. Record your days and your progress. Keep a journal, or maybe just a day planner. Write on the calendar. Try not to write on the walls, but if that makes you happy, go for it!! Sign up for challenges on places like Goodreads or Ravelry. Maybe create your own challenges. Do it!

    Every night I record my knitting progress into my day planner. It’s kind of cheesy, but it helps me keep going. Last night I cast off the sweater and made sure it would fit me: it fits!!! Tonight I will start on the pockets.
  7. Clean and organize stuff. In a world where we don’t have a lot of control over what is happening, it sure helps to create a nice, clean, tidy environment for yourself. Go after the cabinets and clean the closets! Organize the pantry. Arrange your books, or games, or whatever you have cluttering around in your living area. Clean up your music, photos, or the files on your computer. You’ll be so happy that you did. I cleaned the garage last week and I am still riding the wave of good feeling. Next week: the yarn stash!!
  8. Connect with everyone you can. Talk to neighbors from your doorstep. Chat with family and friends online. My book group is working out how to meet virtually next week. Remember to text to check in with people often. Being isolated doesn’t mean that we need to be all alone.
  9. Don’t forget to shower, people!!

So that is my list. A list! I made another list, look at me go! Take any of this that is of use to you, and absolutely ignore the items that aren’t. Feel free to chime in and add any other ideas that you have to cope with being forced into inaction during a time that screams for action.

Be safe, everyone!

The Scleroderma Chronicles: The Blue-Lipped Zebra Goes On Oxygen

This week I finished up the pulmonary tests to see what was up with my lungs. This was pretty darn stressful and the poor BLZ was just besides itself with the trauma of walking into a major hospital to get admitted for outpatient testing.

This is my son’s kitten Jonesy, named after the cat on the Nostromo, the ship that accidently picked up a deadly Alien while answering a distress beacon on a strange planet… Jonesy is utterly fearless, more than capable of facing down a scary monster alien. This Jonesy is also pretty darn fearless. Be brave, face this down, I told myself while petting Jonesy.

I was brave. On the day my state opened up the first drive-through testing station for the Covid virus, I presented myself at outpatient admissions. I wore my fleece gloves the whole time I was there and followed all of the safety guidelines. I combined two appointments into one so I could pick up the equipment for overnight oxygen level monitoring while I was in the building for pulmonary function testing. The hospital was almost deserted and had bottles of hand sanitizer out for use at every stop on my route, so it wasn’t as bad as it could have been. I literally swerved and walked around anyone in my way, especially if they were wearing a face mask…

In case you all need a reminder, my red blood cell count (rbc) is way too high, and I have blue lips and shortness of breath. My internist diagnosed polycythemia, and once I googled it I discovered that I have every single one of the listed symptoms. The purpose of all of this testing is to uncover the underlying condition causing my rbc to rise. So, let’s just jump to the chase. Here are the results:

    • My lungs are scarred and I have interstitial lung disease, a type of restrictive lung disease. I am stable and haven’t gotten worse when compared to the last testing two years ago.
    • It’s not pulmonary hypertension. Yay! That would have been really bad news. My echocardiogram showed that I am at the upper limits of heart wall thickening, and my pulmonary artery is at the upper limit of normal, but I’m hanging in there.
    • My oxygen level fell below 89% for almost an hour while I was sleeping the night I wore the monitoring equipment. Yay!! Houston, we have found a problem!!

Once the results were in the pulmonologist’s office called for a phone appointment and I got the good news. Well, the sort of good news. I have to go on oxygen overnight to keep my levels up, and the hope is that my rbc count will start to drop. If overnight oxygen doesn’t do the trick I may have to go to oxygen 24/7, but I’m not there yet. (The BLZ is happy but a little sad too. The BLZ hates to wear oxygen, and really doesn’t want to wear it when it goes out shopping… ) Seriously, I don’t appear handicapped until I have to walk with a cane and wear oxygen… then there is no hiding it any more.

Thinking about future appointments and the procedure with the hip specialist (I need an injection of steroids into my bad-boy hip), I asked what my risk from Covid was… (The BLZ was trying to not cry) and my pulmonologist told me straight out that she thought I would survive an infection but that I should put off any more trips to medical clinics for a few more weeks so that hospitals could finish gearing up for severe cases. Well, shoot. (The BFZ is now sobbing…)

Then I throttled the BFZ into silence and headed out to buy the last of the supplies that I needed to get through a few weeks alone. I’m immunocompromised; the medications that I take to control my autoimmune diseases have helped me to become stable, but they also make me high risk for any infection. Nothing has changed, I reminded the BLZ, but now the risk of a serious infection is coming at a time when the medical system may be overwhelmed and unable to take care of me. I’ve been using good judgement, social distancing, and hand washing for a few years now; I will continue for myself and everyone else sharing this scary time.

The truck carrying the oxygen equipment was at my house waiting for me when I returned so I am set up. Hopefully the BLZ will now slowly fade away and I will stop panting for air every time I move.

If this was a race to get new test results into my chart, the underlying cause of my polycythemia identified, and remedial measures into action, I have made it. I have a phone appointment with my new rheumatologist next week and I will ask her about the hip procedure and referral to the foot specialist, but I think that in the current unfolding Covid crisis there isn’t any hurry.

As for the inner voice that worries and feels panicky, my inner BFZ voice, I am going to smooth it into submission with the peaceful zen of knitting. Be brave, be brave, I purr to myself. Just like my son’s kitten Jonesy.

You all be safe out there!!

The Scleroderma Chronicles: The Blue-Lipped Zebra gets some MRIs

I feel like I am in a race now. I absolutely, positively need some answers to all of my little medical issues, but I have to hurry, hurry, hurry because the Covid-19 virus is already in my state and I think that in just a matter of days or weeks the health care machine is going to be devoted to critical care and the pandemic response. I hope none of my doctors get sick. I really like the nurses in their offices. Gee, this is starting to get to be really stressful…

Let’s take a little break to smell the roses… umm… the orchids. Look at how nice my rose gold orchid is doing in the living room these days.

So, this is the situation as I got into the car and drove to medical clinics FOUR different times last week. By Saturday, when I needed to drive to a facility an hour away for MRIs of my right hip and left foot I was starting to feel like I was pushing my luck. The BLZ totally wanted to stay in bed. I was worried about having to go through an urgent care waiting area full of sick people because the last time I did that I came down with… THE FLU. Ugh. The place is sure to be crowded with weekend warriors and sick people who were afraid to take off work on a week day…

When I got there the parking lot was almost empty. What?! What is going on? I checked on my phone to make sure I was at the right facility, and then went inside to see if I could find someone. The place was deserted!! The only person in sight was the security guard in her glassed-in station. I checked in with her to discover that the entire facility was closed except for… wait for it…medical imaging!! Woohoo!! I clomped down to the basement for my 90 minutes in a MRI machine feeling pretty good about my chances of avoiding this new virus that I’m now sure is gunning for me. All went well, I headed home, fixed myself a little dinner, popped a couple of gummi bears into my mouth while I was cooking, and BROKE A TOOTH!!

How about another little orchid break? You can see how big the monster is compared to my other orchids.

Sigh. Now I have another two medical appointments because the tooth is sure to need a crown. Plus I have two more testing appointments next week which will really be starting to push the safety margin.  The BLZ is not happy.

Today I saw my wonderful dentist who let me know that gummi bears are notorious for hurting teeth. Who knew? He fixed my tooth and gave a computer print-out for a type of safe gummi bear, and before I left the office I saw that the MRI test reports were ready. That means my rheumatologist already released them. I read the reports in the car in the parking lot on my phone before heading home. (Although I wanted to go get my gummi bears!!)

Background: I have been struggling with painful and swollen joints for at least three years now. My last rheumatologist tested me for inflammation markers (C-Reactive Protein, to be exact), and since my level is normal, she concluded that my joints were fine, that I was a whiner, and the symptoms that I reported were exaggerated. (!!) I wrote about the last awful appointment I had with her in this post. After I had recovered my mojo and began to take action to improve my situation I wrote about my old rheumatologist and my swollen joints here. My new rheumatologist, who I saw last week, ordered these MRIs to check some lumps on my foot and my bad-boy hip. She wondered out loud why no one had followed up on my first appointment to the hip specialist. I think I’m going to be much more happy with this rheumatologist.

Oh, my. My hip joint is really bad. The word severe was used. There is edema in the bone! There is fluid around the joint that is pushing out into a bursa towards the front inside part of the hip joint. (The very bursa that I asked about before when I saw the orthopedic specialist. It couldn’t be involved, he assured me, because that would be very uncommon. The BLZ is braying “I told you so!”) A tendon on the outside of the joint is partially torn. The synovial lining around the joint is inflamed. Even joints in my ankle (that don’t bother me) are inflamed and have fluid in them. Stunned, but feeling absolutely vindicated, I began to drive home. Before I had even gotten to the freeway the new rheumatologist was on the phone to me. She is sending me back to the hip specialist and I need some steroids into that hip joint as soon as possible. And maybe surgery. And I should go back to physical therapy. The BLZ decided we should mention my knees later on… Oh. I almost forgot. I also have two benign tumors on the bottom of my foot that will require another specialist. Did you hear that thud? That was the BLZ flopping over backwards in dismay.

After a little knitting this evening the BLZ is feeling more the thing again. Look at how far I’ve gotten on the knitted kitten!

Tomorrow I head back to the clinic in the north to get a pulmonary function test and to pick up the equipment for overnight oxygen level monitoring. I won’t touch anything, BLZ. It will be okay. We are brave! We are on a roll now and we are getting some answers!

Be safe everyone!

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: Rare Disease Day 2020

I’m an orphan. I’m a zebra. I am rare. This is a club that is hard to get into because it has really specific criteria, but it also has lots and lots of members.

What, you say? Whatever is she talking about?

I’m talking about rare diseases! A rare disease is classified as one that impacts a small percentage of the total population. Here in the United States that means fewer than 200,000 people diagnosed with the condition/disease. Perversely, there are a lot of people with rare diseases as there are almost 7,000 different rare diseases!  Some of these diseases are common enough that you may be familiar with them: albinism, achondroplasia (a type of dwarfism), and autoimmune hepatitis are examples. Others are very rare. Most are genetic in origin, and half of them impact children. More than 90% of rare conditions have no drug treatment. You can learn more  about rare diseases in general and search for specific conditions/diseases in the links at the end of this post.

So, what is Rare Disease Day? The purpose of this day is to raise awareness of the many, many diseases that are classified as “rare” around the world. The hope is that by shining a light on these diseases, and to put a face on the people who struggle with the many rare conditions that are out there, there will be improvements in how these people are handled in the health care system, drug companies, funding agencies, and by the public.

I joined the rare disease club 5 years ago when I was diagnosed with systemic sclerosis, a serious form of scleroderma that has no cure, can be disabling, progressive, and often fatal. These last 5 years have certainly been eye-opening for me, and I believe that my experiences are shared by many others who struggle with rare diseases. Let me list some of my epiphanies during this journey:

    • People in general are dismissive of illnesses that they have never heard of before. If you are a person with a rare disease, it is almost a certainty that no one has heard of your disease. Oops. You just got written off as an attention-seeking hypochondriac by a person who hardly knows you because they never heard of your disease…
    • The health care industry is designed to treat people with common diseases, and often ignores, dismisses, or denigrates patients who don’t fit the normal profile: the zebras. It is really, really hard to get a diagnosis for some rare conditions (autoimmune diseases like mine are famous for this). If you have a rare disease, you are trying to make your way through a system that wasn’t designed to identify and treat you.
    • There is little incentive for drug companies to develop treatments that can only be used for a small patient population. That’s why there rarely is an effective treatment or cure. That’s also why drugs for rare diseases are called orphan drugs; another name for a rare disease is an orphan disease. Yep, I’m an orphan, but there are several drugs with orphan status in the development pipeline right now. I’m lucky that way; most orphan diseases have no drugs for treatment under development.
    • To be rare means you may be too risky to treat. Once you are diagnosed with an unusual health condition it actually interferes with your medical care; because you are complicated physicians are likely to dismiss or “just monitor” symptoms that would receive immediate attention in another patient. Without more experience they can’t be sure what is “normal” for you and/or if the treatment usually used for other patients might make things worse for you. There’s another whole blog post about this on the way!
    • It is really, really hard for people to wrap their heads around “chronic.” We almost all universally believe that people can get better if they just try. Attitude is everything, right? If you just took this supplement, started eating keto, got more exercise and sunshine, tried essential oils…
    • Closely associated to this belief in the general public is one that assigns blame to the ill for their disease. If you are sick it must be because you ate too much red meat, or are obese, or failed to exercise enough. You should have eaten organic!! I know that people do this because they want to believe that they are safe from a similar diagnosis, but it still adds to the burden of those dealing with a life off the mainstream, caused, not by their choices, but by an inherited flaw in their genes.
    • If all of this wasn’t enough, or maybe because of all of this, rare diseases are expensive and isolating. Resources are few. Support is hard to find. You feel alone. An orphan.

So, this is Rare Disease Day. Some people with rare diseases must share experiences like mine; many are far, far worse than my own. If you would like to learn more about rare diseases here are some resources:

A Month of Crutches and Panic Knitting: The Destash Project Update

It really has been a quiet month for me as I’ve been more housebound than usual as I slowly recover from bursitis and tendonitis in one (thank heavens only one!) hip. I’ve been doing my physical therapy, faithfully using my crutch whenever I have to do any prolonged walking (like going to the grocery store), and even started a gym membership so I can start on the reclined bike for the prescribed 5 minute workouts. It helps that it has been cold and I’ve been very motivated to get some projects done. I cleaned up my sewing room and started on some quilts, joined another book club, and began some serious panic knitting to get my yarn destash project back on track after a disastrous September shopping spree.

I entered the month with only 33.5 skeins out of the stash, and my goal is 50 skeins out of the stash before the end of the year. Yikes! I settled into the knitting chair, started an audiobook and began to catch up on knitting projects every afternoon into the evening.

I had two sweaters that were close to completion at the start of the month: the Climb Every Mountain (upper left) and the Koivua (upper right). I finished them up rather quickly (3 skeins used) and then cranked out the Understated sweater (bottom right) in less than two weeks, using up 6 skeins in the effort. Pretty productive!

This week I pulled out several skeins of yarn that were kind of rustic (not superwash), paired then with some mohair that I’ve had stashed forever and make MacKenzie (my very spoiled and demanding cat) a cushy padded sleeping blanket in three days flat while a series of cold fronts dumped a foot of snow and drove temperatures into single digits. It helped that I used big needles and 4 strands of yarn held together for the project.

Another 7.5 skeins of yarn used!!

I also managed to polish off a couple pairs of socks (very simple, mash-up socks that are winter workhorses…) that aren’t all that much to look at, but they used up another couple skeins of yarn.

See what I mean? These are just simple ribbed socks with a sturdy heel.

I have a couple of other projects on the needles at the moment, a cowl and another sweater that will take me through next month, and then before I know it I will be at the end of the year. The destash project kind of hangs over me so I have been knitting steady.

This sweater got started this evening and should really use up most of my Heilo stash. I have 20 skeins of the Heilo, so I have been saving this sweater back as kind of a ringer for the destash project. This is Barn from the book Knits About Winter (Emily Foden). It will be nice and warm for me as winter weather really arrives in the weeks to come.

This evening I totaled up the skeins used this month on my little spreadsheet (yes, I am that big of a geek!) and to my shock the total now is…

52 skeins!!!

I have made it! The destash goal is polished off and I will be way over it when I finish the Barn sweater. Whew! I can now shift attention to getting more sewing done and maybe even will be able to spin a little or do some weaving before Christmas if the hip behaves itself. Maybe bake some cookies. You know, go wild with the relief of having made my goal. Who knew that bursitis, tendonitis, and being on crutches for a few weeks would turn out to be a blessing in disguise? Every cloud does have a silver lining after all!

I will, however, be staying out of the yarn store until the end of the year! No more slips, no more slips, no more slips (chant along with me, people!), no more slips…

May your knitting be good, your books exciting, your chronic illnesses (if you are a member of that club with me) well behaved, and all your New Year’s resolutions met. Have a great weekend, everyone.