Scleroderma – Page 7 – Yarn, Books & Roses

The Saturday Update: Week 3, 2021

What a week, what a week, what a week! We saw our new president inaugurated here in the US, I went wild and set up a plethora of new knitting projects, I had issues with my health through the week, and yesterday I spent most of the day in Urgent Care getting some testing done. Whew! Let’s just unpack the whole week, okay?

But first:

I knew there was a chance that I might be gone from Hannah for a few days if my new symptoms spiraled out of control so I installed a new Hannah cam. Alright, that was a little bit of a struggle as I hunted for screws to mount the camera (Hannah, where did you put the package of screws…) onto a shelf in the craft room. Never finding the correct screws for the mount I hunted through the garage to locate alternative screws. Got them. Then the power drill was… out of power… so I found a screwdriver. Right. There is no way these scleroderma wrists can put a screw into wood without a hole already there. Back to the garage for nails and a hammer to put a starter hole into the shelf. Hannah was a huge help through all of this, by the way. As I hammered in a nail to make my starter hole in the shelf Hannah swooped the screws off the table and onto the floor, because… it’s a cat thing. “Why is everything so hard…”, I muttered to myself as I rescued the screws and got them into the camera mount. Hannah moved up onto the shelf so she could help me work better… that little paw can work magic, right? Finally, finally I finished and checked to make sure the camera was on the network and working correctly…

The first thing I see through the camera feed…

Knitting:

I have been doing pretty good keeping my knitting WIPs under control. Then the government sent me some money and I bought yarn! Hello, just doing my part to stimulate the economy and support other people, right? I am just rolling in creative ideas for knitted projects and this week I bought and printed patterns, organized knitting kits and cast on with reckless abandon. You might say that there was a small explosion of knitting projects.

Did you get all of that? Let me tell you what’s up starting with the pictures on top, left to right. (1)I lost my mittens, so I need to make those Tinsel Mitts before it snows again. They have a flip top to cover the fingers and I’m thinking that there must be some way I can line them for more warmth. Maybe with some fleece or wool batting stuffed into the lining to keep it all extra warm around the fingers? Hmm… (2) I moved the Goldwing sweater up my queue and want to get started on it as soon as a couple of little projects move off the needles. That sweater is sooo cute and I love the yarn that I just bought for it. (3) I bought lots of bluish yarns while I was sad last spring, and now I want to stay warm without putting too much effort into it. I know that the Age of Gold shawl has lots of soothing garter stitch with a nice warm drape and good coverage so I am making it again with this blue multi yarn. (4) The group of pink and grey yarn is going to be used to make a pair of arm warmers to match my Secret Handshake cowl that I made in that MKAL last fall.

That takes care of the top row of projects. The bottom row shows the two projects, left to right, that I worked on this week along with the WIP that I carried into the week, the Geology Socks. (1)I wanted easy, calming knitting to produce snuggly warmth early in the week and went to Ravelry to look at patterns. I decided on making another Age of Gold but there was a wrap that really screamed that it wanted me to make it: Julie’s Wrap by Joji Locatelli. Darn. That wrap needed more than 3 skeins of yarn to make. Wait, wait, wait… I had 4 skeins of a dusty black cashmere/merino fingering yarn lined up for a sweater that could be directed to this wrap… bam! That yarn instantly became this wrap as I frogged the sweater and decided to knit Goldwing first. (2) The yarn on the right is to make a pair of detailed Mandalorian mitts.

Having made the kits and decisions, I then got busy. Once again, the projects are lined up left to right in the pictures above. (1) I have finished my first Geology sock and am started on the second sock. (2) I am making good progress on the Mando mitts even though you have to use three colors at once in parts of the mitts, and I need to add more detail with duplicate stitch after I finish. I don’t think that English is this author’s first language as some of the written directions are a little shaky, but the charts are golden and I’m just using the force and charging along fearlessly as I knit these mostly ignoring the directions. (3) the dusty black garter knitting is the beginning of Julie’s Wrap coming off my needles. Right now I have over 2 feet of done with 2 more feet ahead of me before I start on the twisted rib outer trim and finally the (be still my heart…) BOBBLES! that are produced in what I think is the bind off. I love bobbles! I learned how to knit backwards just for bobble production, and if ever there was a time to utilize that singular skill it is while making bobbles on a wrap that is more than 4 feet long. By the way, now that I’m knitting that black yarn I’m glad it is becoming a wrap because it is pretty darn streaky. See, a good decision!!

Scleroderma Chronicle:

Sigh. Then there is my continuing scleroderma adventure. I’ve been experiencing some intermittent chest pain that has become more severe and frequent over the last couple of weeks. When you are chronically ill you don’t call in every new development because if you did you would wear out your doctors and you’d absolutely exhaust everybody involved in your life, but when I had a 45 minute bout of chest pain Thursday night along with blue lips and shortness of breath I knew I had to get some medical evaluation started.

The medical group that I belong to has a 24 hour online “chat with a doctor” to get advice. The advice I got was to head to urgent care to get a heart attack ruled out. Okay. I can do that…

When you show up at urgent care with shortness of breath and chest pain you get double masked and whisked into a sealed exam room where you are isolated from everyone else and the medical staff wears all the protective gear available to them. Whew, that was fun. After testing and 5 hours of waiting (and starving because I hadn’t eaten just in case…) I was told that this wasn’t a heart attack (YAY!!) but that there was an issue with fluid around my heart. It’s an autoimmune thing. I need more testing and evaluation and may need to be hospitalized to get it done, but since it was the weekend I convinced them to let me go. Actually, I think that I was lucky that I went to urgent care instead of an ER as it made it easier for me to escape. 🙂 Referrals were made, summaries were sent off to my rheumatologist, and I drove home with my chest still hurting. As soon as I got home I shot off an email to my rheumatologist and went back to bed. Bad scleroderma, bad!!

My niece sent me soup today using DoorDash!

Today I’m up and doing better but taking it really easy. Yesterday was just another chapter in my scleroderma story, but it really impressed on me that catching Covid-19 would not be a good thing at all.

Wear your masks, people!!

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.

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…

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: Week 34

Here I am again, posting late on Sunday night. This week was not good. Bad week, bad!! Seriously, it was just multi-dimensional in the badness that went on during the week. I have to admit that it can’t all be blamed on the calendar, although I do think that 2020 continues to behave in a completely unacceptable batshit manner. Fire tornadoes?! Really! Two hurricanes in the Gulf of Mexico at the same time?! There is an asteroid approaching earth? Of course there is! 2020, just stop right now!!

An interesting development of the week was Hannah discovering MacKnitzie on the bookshelf. She’d been up there several times before, but now she thinks that it is fun to drag him down by his tail onto the floor to play with. Such a determined girl, she is undaunted by the crash of falling books…

Incorrigible! I think that MacKnitzie is in for a few adventures…

There was almost no reading this week and very little knitting. Why? Just read on, my friends. 🙂

I am fighting an infection, which is always a situation where I first respond with an “oh, oh” and then with a shortly followed word that won’t be shared here. I went onto antibiotics and off my immunosuppressant drugs: race time!! As my immune system revs up and attacks the infection I am also going into a flare of my disease. SO NOT GOOD!! The plan is that the antibiotics will tip the scales to favor defeating the infection before I’m too sick. Ugh. As I got sicker and sicker from my autoimmune buddies I started sleeping through most of the day.
We waltzed around with triple digit heat all week. That slight wailing you hear is my crispy garden plants crying in the heat. The louder wailing you hear is me…
There are horrible wildfires going on in my state and California that are sending smoke my way. A lot of smoke. The sun is a dull red ball in the sky, ash is falling, and things don’t look to improve soon. My distress needle is firmly pegged in the red. My lungs think this isn’t optimal. The smoke is affecting my eyes so I can’t read and I’m staying on oxygen 24/7 while this is going on. I know that this is nothing compared to the people fighting the fires and evacuated from their (possible destroyed) homes. The latest news is that Australia is sending California fire fighting resources, and our governor just activated the National Guard. There is another tough week ahead.
The nightly news over the last week was also enough to make anyone go back to bed. In the midst of an uncontrolled pandemic that has me trapped in isolation with my adventure-seeking kitten, completely dependent on delivery services, evidence surfaced this last week that the postal service has been sabotaged. No wonder my prescriptions have been wandering around and arriving late and why hasn’t my printer ink come yet!! I’m taking this really personally since now, instead of just messing with the world supply of hydroxychloroquine, a drug that I need to control my Sjogren’s and scleroderma, the agency I need to bring it to my door is also under attack. Instead of knitting I directed energy to writing my congressmen.
It is the 6th anniversary this week of my scleroderma diagnosis. Normally this date wouldn’t lay me low, but this week I couldn’t walk, breath, eat anything without a negative consequence, and… you get the idea. Sad anniversary, scleroderma.

Whew! The flaming hot hard lump in my leg is much better today and I went back onto my immunosuppressant drugs. This evening, as I type this, my dizziness has faded away and I feel almost peppy walking on legs that don’t hurt. Yay! Hopefully the antibiotics will manage on their own from now on.

Bring it, 2020! I’m ready for you again!

Knitting

I did manage to get some knitting done through the week. I am now working away on the lace outer edge of my Far Away Dreams Shawl. Look!

My goal for the week was to get the lace edging done, and truthfully I worked into the wee hours of the morning last night to get there, but nope, not yet. It is starting to look really nice (all bunched up on the needles…) and I’m liking that dark color for the lace more and more.

I’m also still working on The Sharon Show. The third clue dropped Friday but I am doggedly knitting along on Far Away Dreams since I am so close to the end and I should be able to catch up with Sharon later on in the week. I did download the pattern and discovered that this third clue had lace sections. WOOHOO!! I love lace. This MKAL shawl is going to fantastic. The knitting goals for the week are now set: finish Far Away and then Clue 3 of the Sharon Show.

Also, I dug around in the yarn stash to find some yarn to make another Sharon Show. This shawl is fun!

Garden

I can’t really go outside too much, but by wearing a mask I’m managing to make short trips out to water plants and pick up mail. I wanted to buy some more bedding plants for the fall to replace ones that expired in the heat, but the way things are going right now I decided to take down the hanging pots and put them on top of the dead planters in the front yard. What do you think?

The heat hasn’t been kind to the plants so I babied them for a week on the deck before moving them out front. There is more shade in the front and I hope that they will continue to recover and bloom.

Books: don’t make me laugh. Smoke in my eyes and all that…

Have a great week, everyone!!

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

The Saturday Update: Week 29

Ugh. I’m still struggling with the heat and I’m STILL in a flare. I spent another couple days in bed, talked to my rheumatologist, and really didn’t get too much done. The nightly news is just awful (seriously, how much worse can 2020 get? Don’t ask!), Hannah has decided that all of the best toys are KNITTED, Covid-19 cases are surging in my state, and my doctor has re-emphasized that I am totally on lockdown. No visitors. None. Well, if they stay outside, keep their mask on, and stay 10 feet away maybe one of my sons can come… Sigh. My joints are not getting better, and it is still too risky for a joint injection. I have to admit to some sadness here… what good are doctors if they can’t just wave a magic wand to make you feel better??! There was, however, some good news this week.

My governor has ordered everyone to wear masks in this state. At last!! I went to the grocery store late this evening (which I am not supposed to do, but the kitten needed more food, and I absolutely needed cheesecake…), and every single person in the store had a mask on. People made obvious efforts to give each other space. Thank you, thank you, thank you, everyone!! Don’t tell my doctor you saw me, okay, and thank you so much for being kind to me.

Also, the store had some cute orchid plants for sale, but more about that later.

Knitting

I started out the week working on my Breath and Hope shawl, but as the heat outside built and my flare intensified, I just wasn’t able to keep my attention on it. I decided that I didn’t have the brain power to work on my other glove either, so Hannah and I headed up to the yarn stash to see what I could find to knit some simple, mindless projects.

I forgot all about this yarn! I bought it to use with my latest V-Neck Boxy sweater. I decided to make a simple little cowl that would be small and easy to stuff into a Hannah-proof project bag.

I decided to make a Willow cowl. I always wanted to make one, and it would be simple to do as it uses a very simple lace with no chart. My project notes are here.

I has also found a great shawl pattern, Far Away Dreams by Joji Locatelli, that starts out with lots of simple garter stitching. I had some yarn left over from a sweater that I knitted last winter, so I dragged it out and wound it up too. Hannah helped.

Yarn to knit Far Away Dreams shawl. — Yarns to knit Far Away Dreams shawl by Joji Locatelli. The pink will be the garter stitch interior of the shawl and the lace border will be knit using the pink and the gray.

It doesn’t look all that appealing in the indoor light this evening, but this pink garter is easy, soothing knitting that I’m cranking out with a little help from Hannah.

Garden

Yeah, I’m not going outside in this heat. Poor garden. It got some water and I’m pretty sure that it’s still alive, but that’s it. Let me offer up a poorly shot photo of my new orchid. 🙂

The light for this photo is just awful, but you can sort of see it. It’s a creamy white with beautiful purple and rose highlights.

I was taking the picture really fast because Miss Hannah was all over the new orchids. They had tissue paper and ribbons on them… “new toys,” thought Hannah. I have those ribbons off the plants now!

By the way, I did notice that my potato plant in flourishing in spite of the neglect that happened this week. Figures. It’s growing taller than the dead rose twig coming up through the plant. I think that it’s growing to just spite me now.

Books

I’m back in Outremer learning all about King Baldwin IV and the Kingdom of Jerusalem.

Have a great week, everyone!!

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

Footnote:

What is this flare that I am ~~whining~~ complaining about? A flare is a surge of symptoms in both number and severity. In my case my constant fatigue gets a lot worse, my joints and muscles become pretty painful, eczema eruptions appear, and my gastrointestinal symptoms intensify. If I walk into the hot air outside I can’t breathe. Bad scleroderma, bad!! I’m on more drugs at the moment, staying on oxygen through the day, and surviving on yogurt and simple carbs. Next week has a better forecast and I’m looking forward to eating some great green chili!!

The Saturday Update: Week 26

Week 26?! Do you realize that we are now at the halfway point for the year? I don’t know about you, but 2020 has been just horrendous so far. I do hope that it decides to straighten up and fly right for the second part of the year…

There has been a lot going on for me this week, but I think that I will just start out with the Hannah update. Hannah, who is almost certainly the last kitten that I will raise, is turning out to be the perfect mix of all the cats I have loved in the past. She is affectionate and attached to me, easy to distract and train, smart, talkative, and fearless. She ignores the plants and hasn’t gone after my knitting all week!!

She is particularly fond of little stuffed toys that she can fling around and carry from room to room in her mouth.

Okay, it isn’t all sunshine and roses. She climbs into the refrigerator and dishwasher every time I open them. She started climbing the screen door and curtains today. She pestered me to wake up this morning because she wanted me to turn off the oxygen machine so she could play downstairs… I’m hoping that that doesn’t turn into a thing! Still, I am so happy to have my little buddy now that it appears that Covid-19 won’t be going away any time soon in my part of the world.

Knitting

I’m making some progress on my socks! The first sock is done, and now I’m cruising through the second sock. I’m focusing on small projects that I can quickly stuff into a project bag because… kitten!!

I really like the way the knitted fabic looks!

I love the stripes so much that I’ve been daydreaming and trying to work out how to knit tipless gloves by adapting my usual fingerless mitt pattern to put on the half fingers. Wanting to maximize the amount of leftover yarn I dug through the stash and located the purple yarn that I’m using for the heel and toe portions of the socks. I’m pretty pleased with the look, and now I’m wondering how to incorporate the purple into the gloves. My Ravelry notes are here.

Garden

The week has been one of gloomy afternoons and thunderstorms. Luckily I haven’t had damaging wind or hail, and the roses continue to strut their stuff. My Princess Alexandra of Kent rose in particular continues to shine.

This rose is a David Austin English rose and I keep thinking that I should get some more. My neighbors and I fixed the fences this summer, so maybe those new fences should have some climbing roses planted near them. Something to think about. I really like yellow roses…

Books

I finished The Mirror & The Light this week. I hardly know what to say. This is a rich, rich book that will continue to haunt me in the weeks to come and I may need to read the entire Wolf Hall trilogy again. Maybe it is because I am entering my fourth month of isolation, and I have lots of time on my hands to reflect on things, but the richness of the characters and the subtle connections of the past to the present as the story plays out, but never really ends, are just astounding. Cromwell ponders on how images painted in the past bleed through new paint to show in the present as he remembers violent actions in his past. Memories of his years as a soldier rise as he marches into meetings and dinners. Near the end of his life, imprisoned in the Tower of London, he recaptures that transformative moment, broken and bloodied in the street, when he abandoned his childhood to launch on the path to who he was now. At the start of this book one of the standout lines is, “if you cannot speak truth at a beheading, when can you speak it?” At Cromwell’s own beheading there is a sense of truth and transition again; I was dreading the end of the book, but you know what, it was actually hopeful and a befitting closure to a great life.

After a book like that, what next? Science fiction, of course! I launched right into a fun little space military opera that is a three book series and I’m happily working my way through it.

There are a number of characters who are slowly being developed and connected as the story line progresses. There was a war. One planet lost. The losers are suffering under harsh peace treaty stipulations. There is some type of rebellion brewing. I sniff corporate greed and political machinations on the horizon. Must keep reading…

Quilting

Look at this! A new category just appeared again. This week has been kind of tough on me joint-wise, and I have finally made myself admit that I need to lay off the knitting for a while. Okay, my joints are really kicking up a fuss, and my shoulder is the biggest complainer. Sigh. It’s like all of the tendons and ligaments are under attack at once, and my drugs aren’t keeping up any more. I’m already on a lot of drugs, and in the world of Covid I’m fearful of getting steroid injections into the worse joint complainers because it increases my immunosuppressive load. Scleroderma, you need to behave yourself!! Anyway, I need to lay off the knitting, so I dived into my endless stash of “projects that I want to make someday” and…. pulled out a really cute art quilt!

This is the first block of an eight block quilt.

This is the first block to build “Calling Me Home” by McKenna Ryan. The picture is built by tracing the pattern onto little bits of fabric that are then fused together. No sewing at all until I get the whole quite top put together. I’m thinking that my shoulder can handle this…

All of these little bits of fabric, to be exact.

It’s like an adventure! All I have to do is figure out which little fabric bit goes with what. Luckily I have that picture to help guide me. This is going to be a little like building a jigsaw puzzle! I hope that Hannah behaves herself while I’m cutting all of the pieces out.

Have a great week, everyone!!

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

The Scleroderma Chronicles: June is Scleroderma Awareness Month

Five years ago the course of my life altered forever when some blood test results ordered by my doctor arrived: the results showed that I definitely had two autoimmune diseases. Specifically, I was producing antibodies that were diagnostic for scleroderma and Sjogren’s disease. I was expecting lupus, so this was kind of a ~~surprise~~ shock. After a quick trip to Google to establish what type of scleroderma was associated with my positive test results I burst into tears. It was worse, much worse, then I expected.

The scleroderma diagnosis was the problem. Through an unbelievable sequence of serendipitous life events I was more knowledgeable then the average newly diagnosed patient, and I knew that scleroderma was a disease that impacted connective tissue, that it was progressive, disabling, and that there was no cure. This was a life-altering diagnosis, and I was in for a long fight that would last the rest of my life.

You see, I used to work in a rheumatology research lab, and I did research in scleroderma. I was a member of the research team that found the first identified antigen associated with scleroderma. I had visited scleroderma patients in the hospital. Later in my life I taught AP Biology and spent years trying to explain connective tissue to students. It’s a type of tissue that we just never think of, but it is critical in organizing and operating our bodies. Connective tissue makes your skin elastic and strong. It organizes your muscles and makes up your tendons and ligaments. It is a critical layer in your blood vessels, and is part of the essential structure of all of your organs. In scleroderma all or parts of this connective tissue is under attack by your immune system.

As white blood cells invade my tissues and attack this connective tissue it produces too much collagen in response. The built up collagen produces thick layers of tissue and scarring. My fingers look really swollen, but it is actually very thick hard skin. My skin is also getting really shiny which means that the collagen is hardening up and losing flexibility. Must knit faster!!

You can perhaps see that same thickness on my face, especially on my cheeks. It means that I don’t have wrinkles, but it is also hard to open my mouth, my smile is mostly gone, and I can’t turn my neck well. Crazy, huh.

That is the most ironic aspect of scleroderma: you look pretty darn good, especially if you are a senior citizen like myself, but you actually struggle daily with your illness. For many scleroderma patients their disease just involves the skin, but for others, the disease is more than skin deep.

As it turns out, my skin is the least of my worries. The rare type of scleroderma that I have, systemic sclerosis, also causes scarring of internal organs. The muscles of my stomach and esophagus have lost function. My kidneys are damaged and I have chronic kidney disease (stage 3). My lungs are scarred and my diaphragm isn’t exactly happy any more. Part of my stomach herniated up into my chest this year… whatever was it thinking of?! My tendons are getting calcified due to inflammation and at least one has partially ruptured. My muscles are sore to the touch and I have bruises everywhere. I have nerve damage and trouble controlling my body temperature. It’s hard to walk. Blood vessel damage affects circulation to my hands and feet and I’m starting to develop open sores (ulcers)… There is a long list of diagnosed conditions linked to my scleroderma, but you get the idea. Pretty much I’m a ~~walking~~ limping train wreck. Well, a knitting train wreck for sure!

There is no cure for systemic sclerosis, but there are treatments that really help a lot. I am taking four different drugs to crush my immune system into submission; it’s a balancing act as I need my white blood cell count to stay high enough to protect me, but low enough to control my symptoms and prevent more damage. I take a drug to shut off the acid produced in my stomach so I won’t accidently inhale it in my sleep since the muscle barrier that usually keeps it in my stomach is now gone. I take a couple more drugs that help control inflammation, and some supplements that help with nerve damage. I’m on oxygen at night. All of these drugs/supplements have made a huge difference for me: my last lung scan showed improvement and my high heart pressure, the most concerning complication that I had, has returned to normal ranges. My kidney damage continues, but it has slowed way down. There is something funky going on with my red blood cell count, but you can’t win them all, right? The main point is that I continue to manage and live independently.

MacKenzie and I last year when I posted this online as part of the “Face of Scleroderma” campaign.

In short, I am a mess. And yet, to the joy of my doctors, I continue to do really well. Okay, I have blue lips, am short of breath, and struggle with tissue damage, but I also continue to thrive compared to other scleroderma patients that they treat. I have had to make many changes to my life, but I have found work-arounds and I still do things that I love. Attitude is all!

Well, knitting, the cat, and the garden are pretty darn essential, too!

So, there it is. What an annoying disease, right? How dare it make you look younger while shortening your life? How dare it do all of this invisible internal damage that makes people think that you are lazy or an attention-seeking hypochondriac when actually you view each day that you are able to leave the house as a personal victory? I’m in several online support groups and there are people dealing with crushing negativity like that. I can see how it can happen; it is so hard to understand something beyond your own experience that is hidden from view.

That’s why there is Scleroderma Awareness Month. It is hard to have a rare disease, especially when it is one that is hard to pronounce (Sclero… what?!). It’s harder still to have one that has no cure and a pretty high fatality rate (hey, with all of the drugs that I’m on my 10 year survival rate is now up to 80%!!). It makes you learn to laugh in the face of terminal complications while forcing you to take every possible precaution to avoid contracting Covid-19. It messes with your head; it gives you power, but it’s also strange and a little lonely.

That’s why we scleroderma patients share our journey with all of you every year so you can get a glimpse of our lives.

If you look harder you will see the signs of my scleroderma on my face. The small red spots are called telangiectasia and are symptomatic of my form of systemic sclerosis. The skin of my forehead is tight and shiny, my hair is falling out, and my dimples are now buried under my thick skin. My upper lip is trying to decide if it wants to turn blue…

I am the Face of Scleroderma.

Footnote: In addition to scleroderma I also have Sjogren’s Disease and fibromyalgia. The symptoms from these three diagnosed conditions overlap and always make things interesting in sorting out my treatment plan. You can learn more about any of these autoimmune disease by checking out the links in my post.

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 Scleroderma Chronicles: The Blue-Lipped Zebra Report!

I’m thinking of myself as the “Blue-Lipped Zebra” these days. Let’s just call me the BLZ for short. You know, a rare breed of difficult patient who is ornery, persistent, and stubbornly insistent on getting straight answers. I’m trying to not use that zebra voice, but if pushed I may whip it out. I’m going after all my doctors to get to some explanations about my panting, blue-lipped, exhausted current state of being. I made myself promise to keep my internal dialogue under control and to not get pulled off topic. Sounds like a good plan, right?

Whew. It is only Wednesday and I’m pooped! I have talked with or met with three different doctors and scheduled 5 different tests. I also made repeat appointments to get back to these doctors after the testing is done. I went into this determined to do a better job coordinating with my doctors and to shift the conductor role to my new rheumatologist. I’m reflecting on what’s happened so far and what my next steps are, and I’ve decided to share with all of you.

Before I tell you about my medical adventures this week I want to show off the monster orchid. It now has 5 blooms open and it looks great!! Isn’t that an amazing color?

Prologue: I have been struggling with shortness of breath, extreme fatigue, and feeling dizzy/faint. My lips frequently look blue. The itching is insane, and what is up with these rashes? I have more recently developed abdominal pain in the area of my spleen. After initial testing my internist has diagnosed secondary polycythemia.

Act 1: The Internist

This was my first phone appointment. My internist is the doctor who diagnosed me with secondary polycythemia, which is a condition with too many red blood cells. The high cell count, in my case, is now presumed to be due to an underlying problem involving my lungs or heart; since lung and heart damage is common with systemic sclerosis that makes a lot of sense. We talked about my gene test results (I do not have the genetic mutation that would have caused the more serious form of polycythemia, which is good!) and planned my call with the pulmonologist. That’s right: I got some coaching from my internist! I agreed to send her an email about what happened with the pulmonologist and rheumatologist after I met with them, and she assured me that she would order any testing that the other two doctors did not. That’s right – I asked her what testing I should ask for. I love this doctor!!

Act 2: The Pulmonologist

Well, this didn’t go the way I thought this would… good thing I got some coaching. It started out with this doctor saying that she didn’t know what I expected her to do over the phone when she hadn’t seen me in her office for over a year. (She fussed at me last time for coming earlier than a year. I tried to make an appointment, but the nurse insisted it would be better for me to make a phone appointment before I saw the rheumatologist… ugh!!) I explained the situation to her, and she immediately said that she didn’t agree with the diagnosis, and that she didn’t think that my rbc count was all that high. <The BLZ was pretty disgusted by this and wanted to blurt out that the diagnosis wasn’t open for debate, but I throttled it into silence…> After redirecting the conversation to my symptoms (you know, ending up on the floor panting for air after a little vacuuming…) she did agree that there was probably an underlying problem driving the elevated rbc count and it would be good to order up some tests before I came to see her in her office.

Sigh. Why is this so hard?! I wondered if we had just been talking at cross purposes about the same thing. <The BLZ wondered why I had to keep battling for routine testing when my diagnoses required it. Whatever.> The tests were ordered and I agreed to make an appointment to see her in her office a few days after the testing was completed.

Act 3: The Rheumatologist

Finally, finally I have landed in the rheumatologist office that the BLZ has longed for. This doctor felt that the lung testing was absolutely warranted, and that if nothing came up she would go right for a cardiologist referral and heart testing, and a hematology referral also if needed. She kind of thinks that this is my heart, but it is good to get the lung testing done first. <The BFZ is now bucking around… happy for action, but a little scared, too.> She reassured me that the tests that were already ordered were exactly the ones that she would have ordered, but they were just the opening round. She mentioned a test that the pulmonologist has refused to order, saying that it is the only way to get accurate information. Yay! Then she did the exam and reviewed the notes on my orthopedic referral since I still can’t walk and I’ve developed more tendon issues in my foot. “Why hasn’t there been a follow-up on this?” she asked. She ordered two MRIs to look at my hip and foot, and gave me the paperwork to get a handicapped parking pass. She also ordered blood work, told me to call her after the testing was done, and that I should be in her office again in 8 weeks. <The BFZ was stunned. Usually I’m told to come back in 6 months.> I have the scleroderma director that I’ve been looking for, people!!

Epilogue

I spent 5 hours over the last two days making phone calls, appointments, reading all of the medical notes attached this week’s appointments, and writing emails. Whew. Through the constraints of scheduling calendars I will be talking about my test results with the rheumatologist before I interact again with my slightly hostile pulmonologist. When I read the pulmonologist’s notes on our phone appointment it kind of smelled of “cover your ass” and the BLZ’s nostrils crinkled in disgust. After begging for inhaled steroids for a couple years, when I saw her last time she offered me a few months worth. Yay! I said. I wanted to check with the rheumatologist before starting them because I’m already pretty immunosuppressed, which I did, and the inhaled steroids were prescribed soon after by my internist and I’m using them right now. In the notes she wrote that she had recommended these steroids and I that I had refused. <The BLZ immediately noticed the nasty trickery with the verbs there…she offered and I deferred!> She also described my landing on the floor while vacuuming as “needing to rest while doing moderate tasks”. The BFZ is beyond disgusted at that. <Get a new pulmonologist, the BFZ barks!>

In between all of this I also got my newest pair of Snowshoe socks done! How cute are these? I knit them holding a wildly bright variegated yarn with a dark, inky blue single ply yarn. My yarn information is on my project page.

So, it was a pretty darn good start of the week. Tomorrow I head off to get an echocardiogram of my heart, and over the next week or so the rest of the testing will happen.

Coronavirus, be good and stay away from me!! I’m going to be in a lot of medical facilities for the next few days.

You all be safe out there!