scleroderma – Yarn, Books & Roses

Shuttle Pilot Days

My sister Selma sent me some of my favorite gifts ever. Beautiful plants, cute figurines, rice cookers, and great shirts all arrived on my doorstep sent by my sister. Two years ago, I tried to get back into weaving, but it didn’t go all that well. I used a table loom and even that was too much for my sad little hands. I had to use oxygen. I was feeling pretty down about the whole thing. Selma, forever unwilling to surrender to the hardships sent her way by life, sent me this tee-shirt. I packed it away.

This is a beautiful shirt, very comfortable and in my favorite color. It was a kind of a flop, however, because… scleroderma. I have a great floor loom that hasn’t been used for almost a decade. I can’t remember when I last produced something useful on a loom. I had kind of accepted that my days of weaving were over.

Then Selma died last summer.

Time to channel the indominable Selma, right?!! This Christmas I bought myself a little rigid heddle loom that I thought I might be able to manage while sitting in bed. Good plan, right? I used the practice yarn sent with the loom to learn how to warp and use it, and then I warped it up again with superwash merino sock yarn. Guess what? I can weave like crazy propped up in bed binge watching Netflex. Yay!

I finished the scarf this week and it is great! I am really happy with the feel and the drape. I bought a little fringe maker tool so I can make even twisted fringes with beads. Did I do this propped up in bed? Of course. I’m feeling pretty successful and I have already warped up the little rigid heddle again. Do I have visions of finished scarfs dancing in my head. Yep. Watch out yarn stash, I am coming for you!!

I also, in a moment of determined optimism, signed up for an overshot weaving class that would require me to warp up and use the floor loom. Oh, boy. Getting the loom warped and correctly threaded was… a lot. Just exhausting, actually, both mentally and physically. Eventually the warp was on and I could begin weaving. Yikes. This was a lot of work. There were problems with oxygen levels and sore muscles. I persevered, took a day or two off between weaving sessions, and slowly I became stronger and my breathing improved. I worked my way through the lessons online, clearly behind the rest of the class, and struggled to master the equipment and technical details involved in weaving overshot, a technique that involved weaving two fabrics interlaced with each other at once to create the type of designs in the pictures below.

Today I have finished weaving two of the major projects associated with the class, and I couldn’t be more pleased. These two placemats look different, but they are actually made from the same threading on the loom. The two looks (the left is called “star” and the right is called “rose” in weaving language) are created by changing the treadling sequence. Cool, right? My next assignment is to create a table runner that combines these two patterns together in a creative way. Yeppers! I am so excited to do that and have already half-way figured out how it will happen on the loom. I have new yarn picked out and everything. I am gaining energy and I can weave much longer at a time, and I’m not experiencing too many joint problems. Am I wearing my shuttle pilot shirt? Why yes, yes I am!

Selma would be so pleased to know that I am once again a shuttle pilot!!

After thoughts:

Selma sent me Swedish gingersnap cookies last year for Christmas. I bought another can and I’m now eating those cookies while I work at the loom.
Grief is a tricky thing. So is stress management. I have discovered that working at the loom, creating something beautiful and useful over time using repetitive movements, helps with both.
I’m thinking of joining the local weavers’ guild.
I have a really lush, healthy looking African violet plant that Selma sent to me one year. Is this plant blooming? Nope. This is kind of on point for my sister. When the time is right, I anticipate that it will produce blooms better than any other plant that I own.

Thoughts on the Night of the Snow Moon: Cruel Romance Personage Year

Some of you who have been following my blog for a while know that I am a huge fan of Murderbot.

Like, I try to channel Murderbot whenever possible. Murderbot struggles with social situations. Murderbot is painfully aware that he is not like other constructs and absolutely knows that he is not a human. He pretty much is unique in most settings. (If he was a human, you might consider him a zebra). Murderbot is a total bad ass; often terrified, roiling with self-doubt and uncertainty, he takes action to protect what is important, and keeps moving forward. There might be some violence and murdering, but he gets the job done. He also watches media entertainment whenever possible. His favorite is a serial called The Rise and Fall of Sanctuary Moon. Do I have a Rise and Fall of Sanctuary Moon tee shirt? Umm… yeah.

That’s why when I finally recovered from my injuries (car wreck) enough to drive last January (2025), I put on a Murderbot audiobook, opened up the sunroof, and placed my emotional support chicken on the passenger seat next to me. I can do this, I told myself! I did it, channeling Murderbot every single time I stepped into the car again until I had moved past the trauma and was a confident driver again.

I would have taken a cat with me if I could have. Mateo, in his January winter coat, declined.

That was how the year 2025 started. I still listen to one of the audiobooks in The Murderbot Diaries series every single time I go out in the car. The last year was just epic in its awfulness. It was difficult on all fronts, and it felt like I just couldn’t catch a break all year long.

My scleroderma flared with new, significant complications that just kept coming. I had tendonitis for months. I developed bacterial overgrowth in my GI tract (SIBO) that stole my energy as I steadily lost weight for months. My cat almost died. My sister died. My son died. I had a serious fall and caught covid at the emergency room. In the aftermath of my covid infection, I developed dysautonomia and new cardiac symptoms that kept me close to home and on oxygen more days than I wanted to admit to. For a couple of weeks, I mostly stayed in bed and on oxygen as moving around just a little caused dizziness and chest discomfort. Did I read Murderbot while I was bed bound? Of course I did. Finally, as 2025 came to a close, I realized that most of those symptoms were much better and that my heart was settling down.

My son’s fingerprint and a bead that he gave me for Mother’s Day.

There is a media serial mentioned in one of the Murderbot books called Cruel Romance Personage: the title, an approximate translation from an ancient language, puts Murderbot off so much he has never watched it. One day I realized what a correct translation would be. Cruel Romance Personage would be more correctly called… Heartbreaker. That is the perfect description of 2025: Heartbreaker.

While I was struggling, I bought lots of new pillows. Hannah has claimed them.

I finally got into the office to see my cardiologist last Monday. We talked about new treatment options. We talked about quality of life decisions within the context of a fatal health condition (PAH). We talked about resiliency. I asked if he thought that my heart had been damaged by my covid infection. Probably not, in his opinion, since I had recovered. The more likely scenario was that I had sustained heart damage from Broken Heart Syndrome, and I am now well on the way to recovery. I have follow-up testing in a couple of weeks.

Of course. How on point for 2025.

I’m supposed to avoid stress. (Ha. Are you listening, 2026?) What am I doing with my time? I’m knitting, reading, and weaving of course. I’m learning new things, I’m picking up new causes. I’m producing new things. I am moving forward.

I am finally weaving my overshot placemat.

Goodbye, 2025. You were a Heartbreaker.

And I am still here. Bring it, 2026! Let’s go!!

Updates from the Knitting Front: Mitt Cycle

I’m in the part of my new sweater (another Weekender Crew) that is just stockinette all the way with a slipped stitch every now and then. I’m alternating skeins so I don’t get too much pooling, but the work is still… kind of mindless. Not mentally challenging. Okay, I am bored. No creativity in sight here, even though I want to get the sweater done… eventually. To make things worse we are experiencing unusually warm weather here in the Denver area and I’m not wearing any of my sweaters. I stuffed the sweater into its bin, parked it on a shelf, and started on some small products.

I decided to start on the mitts to match the grey/dusty purple sweater that I just upcycled. Yay. Let’s do mitts, kitties!!!

I decided to make a mitt that offered some options. It has a ribbed top that should go under the lace on the sleeve okay, and then a little panel of lace to match the ones on the body of the sweater. At the edge by my hand is a picot edge that matches those of the lace on the sweater. Cute, right? Sometimes I want a mitt that comes way down over my hand, almost to my knuckles, so I didn’t sew down the picot edge and knitted a long inner lining that can be pulled out. The final bind off is I-cord, giving a smooth finish to the bottom of the mitt. Yay! I like this mitt a lot. Did I cast on to start the second one right away? Well… no… that would be boring, right?

I pulled out the cat arm warmers because they are kind of the poster child mitt for NOT BORING, right? Over the last three days I got those little mice knitted in, and then I did the paws. Yikes. The paws required 4 colors of yarn for several rows. NOT BORING!!!! I learned a few things about yarn management while working on these, and in a nutshell, the most important one is to cut the yarn off the ball so you have a length of color that you can easily pull through tangles with the other colors. It is a lot easier to catch floats when you have a manageable length of yarn with no ball of yarn in sight, too. The knitting was really slow and kind of a nightmare until I figured that all out, but the last half of the paws went pretty quickly. Do you like the paws?

They look that way because that is what Hannah’s paws look like! Cutest toe beans ever!!!

Like everyone else on the planet I have been reflecting on the last year (thank heavens it is finally over) and thinking about plans for the next one (goals are good, right?) It’s a lot, and it definitely involves lots of yarn and books. As I planned this post I thought about what has been going on lately in my life and the world around me, and I finally thought about a plant that I brought in from outdoors this fall. It was a beautiful bougainvillea when I brought it in, bushy with lush green foliage and not a bloom in sight. I thought about leaving it outside but I finally dragged it into the dining room in front of a large window. Over the next few weeks every single leaf on the plant fell off. “Are you kidding me,” I asked the plant. “One little shock to your system and you give up the ghost?” Yes, I do talk to my plants.

The plant has replied by putting out new growth and blooms on every single little branch. It is literally covered with the tiny green buds of new growth, and the blooms, just now starting to grow out, are going to be something else. This plant is going to look amazing in just a couple of weeks.

There is a lesson here, somewhere.

May you all have an amazing New Year.

PS: I bought a new loom!!! Also, dysautonomia continues. May I present to you Crazy Heart 2026.

The Scleroderma Chronicles: Adventures with Dysautonomia

I caught covid for the first time last summer, and I continued to test positive for almost a month. What a mess. As I slowly recovered, I simultaneously felt better symptom-wise than I had in quite a long time while also developing new symptoms that are now creating struggle.

That sounds kind of crazy, and I probably should unpack things a little. Let’s start with the better, okay?

Hannah: I wonder what she is thinking about all the time…

Last October I had a terrible flare of symptoms that caused extreme joint pain, fatigue, brain fog, digestive issues, and… I WAS UNABLE TO KNIT FOR MONTHS!!!! I struggled to read. It was hard to do even basic things. My GI tract was in full revolt. I began to wear knee braces every day, pulled out the walker, and pruned my diet down to a few reliable items that were safe to consume (lactose free yogurt, I’m talking to you!!) I began to lose weight at a steady clip of a pound a week.

The hand under the hot pack was last year, and you can see the damage that was left behind on my current hand on the right. Last year my rheumatologist tested me for lots of things and I don’t have gout, or pseudogout, or rheumatoid arthritis, or any other thing except common osteoarthritis: no signs of inflammatory arthritis. I thought that was crazy talk at the time, but it’s hard to argue with negative test results even though I feel like I am dealing with obvious inflammation (swollen joints too sore to touch, right?). Anyway, after a year of struggling to knit or even type, my symptoms went away as I recovered from covid and I have been knitting up a storm (well, sweaters, actually, but you understand what I mean). It has been great. I can knit all day if I want. I can literally stay in bed all day, knitting happily along, ordering in groceries and enjoying my books… in bed. I am full of creative energy and am making tons of plans that involve my sewing machine and the looms. I’m wanting to buy another loom (that I can use in bed). Really, things are going great. Fabulous. I’ve even restarted my physical therapy routine, and my mobility has improved.

Oh… why am I in bed? Well… in the wake of covid I have developed worst dysautonomia. I struggle to control my body temperature. My blood pressure crashes when I eat. My heart rate goes bonkers without warning. I’m too cold all day long, and then I can’t sleep because I’m too hot. “I’m so sorry,” said one of my doctors. “This is very difficult to treat or control.” Fabulous. I do want to point out that many of my symptoms are greatly improved, my latest lung testing showed even more improvement, and I feel stronger than I have in years. The hope is that I will get better in time, and in the meantime, the cats are happy to hang out with me as I fuss around the house.

I was just sitting and reading when I got very dizzy suddenly and sure enough, my stupid heart decided to go into overdrive. Another adventure in dizziness caused me to check my blood pressure; for me, that is very low pressure. After another 2 hours I was back up to 128/72 and feeling more like myself. My doctor has advised me to just eat little snacks all day and to drink lots of water if I eat an actual meal.

Scleroderma, this is not funny at all! Oh, well. At least I can now knit and read…

I do want to back up to my bad-boy hands that gave me such a terrible time for most of the year. When I saw my rheumatologist in November she checked my x-rays from last year and then took a long look at my wrists and knees. My wrists are significantly worse than they were a year ago (but causing minimal problems at the moment… go figure) and she decided to order up some specialized testing to take a better look at the joints. Today I drove to downtown Denver to get specialized ultrasound imaging of those wrists. The technician was just wonderful, and she explained what we were seeing on the screen as she stopped to take pictures. There was a lot of obvious damage, fluid in the joints, and calcium deposits in tendons. “You’ve really been going through a lot,” she said. Finally, some validation. It was hard to not feel hopeful as I walked out of the clinic. On the way back home, I stopped at my favorite yarn store for a little yarn therapy action, and that was when the day turned into a “Thoughts on the Night of the Last New Moon” post.

In a nutshell, this is my situation. I feel better, and I am happy, but I am dealing with significant difficulties because my autonomic nervous system is refusing to behave itself. There is no easy fix. My joints are a major ongoing problem with no end in sight, because I can’t do many of the traditional remedies because of my scleroderma. I want answers! I want cookies! I want yarn!!

I walked into the yarn store.

The first thing that I see is a stack of my favorite cookies!!! Yay! I put four boxes into my shopping bag.

Then I saw great yarn that I needed to have. Yep. Into the shopping bag they went with reckless abandon. I want these yarns; my stash has been feeling a little peckish. Obviously, it also needed to be fed. Then my phone toned the sound that told me an incoming text had just arrived, so I sat down on a loveseat right in the middle of the DK weight yarn section and read the message: the radiologist had already read the imaging from my wrist ultrasounds and the results were available.

Active synovitis of the joints in my wrist. Inflammatory arthritis. Ironic, since I’m feeling pretty good at the moment with minimal pain. I wonder what that wrist would have looked like a year ago. It is such a huge relief to finally have a lab result that validates what I have been telling my doctors (and experiencing) for years. There is value in sticking to your guns and asking for more testing. Evidently this type of imaging is new, and it identified the problem that the standard imaging techniques failed to see. I don’t know what can be done to help me, but the relief is immense.

As I drove home, buoyed by the cookie haul, the shiny new skeins of yarn, and a sense of success and validation, I took a different route, passing by a large lake just south of my home. In the sky above me a flock of white pelicans wheeled in the sky, huge white birds with black bands on their wings. My heart soared with them.

More little glimmers:

Through the entire outing my stupid autonomic system behaved itself and I didn’t get dizzy even once!! 🙂
I delivered chemo hats to the infusion center at the facility where I had the ultrasound done. I have a little collapsible wagon that I use to roll the bags of hats to the department were they need to go. People laughed and joked with me as I rolled through the hallways (one lady insisted on pulling the wagon for me on my way in), adding to the overall good feelings of the day.
Remember me mentioning last spring that I was following some bald eagles in Big Bear, California online? Every day I checked the eagle cam to see if the chicks, Sunny and Gizmo, had taken their first flight yet. This week the parent eagles, hard at work preparing the nest for the upcoming chick season, were visited by 2 juvenile bald eagles who in high probability (because of the behavior all the eagles are exhibiting) are their girls from last season: Sunny and Gizmo. It is just wonderful to see them back even though the parents aren’t going to let them come near the nest much longer.
It really is the last new moon of the year tonight.
The interstellar comet 3I/ATLAS is zooming past earth tonight. It has been fascinating to follow over the last few months as its behavior has led to loads of speculation and lots of data collection. Safe travels, little guy.
This isn’t a glimmer, not really. We are in the middle of a high wind event that has forced communities to shut down west of me and the power has been cut to those residents. I feel grateful that there hasn’t been a fire since the risk is enormous at the moment, but I feel bad for everyone impacted by this. Thankfully, we are also experiencing record breaking heat.
I fell and injured my right knee last summer. It still hasn’t healed, and it is getting a MRI next month. Fabulous.
I am planning another post about the yarn and knitting.
Don’t you think that I should treat myself to another simple loom that will be easy on my wrists?

Mateo: Don’t you think that my silver ruff is a glimmer?

The Scleroderma Chronicles: This is World Scleroderma Day!

A couple of weeks ago I went in for a routine blood draw at my local Kaiser clinic. I gave the phlebotomist my ID card and told her my name and birthdate: for some reason they like to verify these things, right? Anyway, what happened this time was… she exclaimed that didn’t look my age. (Well, yeah. That may be one of the bigger red flags for scleroderma… no wrinkles.) “It’s just my disease doing that,” I assured her. “I really am that old.”

This lady wanted to know what I had done to get rid of the wrinkles. She wanted this magic wrinkle remover too! I carefully told her about scleroderma. “I never heard of that!” she said. Still thinking that I was a lucky person, she drew my blood and I got out of there. I would be happy to have every single wrinkle that I have earned over the years, but no… I have scleroderma. The systemic form with limited skin involvement. Lucky me.

I do have wrinkles around my chin and mouth, but I was wearing a mask during the interaction with the lady at Kaiser. I had to go on oxygen this day (I have lung and heart involvement) and you can see the swollen tendons in my hand and the tight skin over my knuckles.

That’s why there is this thing called World Scleroderma Day. This is a complex autoimmune disease with illusive symptoms (brain fog… trouble swallowing…GERD…swollen fingers…trouble breathing sometimes…fingers that suddenly lose circulation and turn white or blue…) that make the disease difficult to diagnose without specialized testing and evaluation by a scleroderma specialist.

Systemic sclerosis (the form of scleroderma that I have) is thought to start with some event (still unclear) that triggers the formation of antibodies that target specific molecules the nucleus of cells. These antibodies lead to damage in blood vessels and their linings; the damaged blood vessels release chemical signals that trigger a cascade of events that impact other cells of the body. Some cells are related to inflammation. Other cells are tipped over into forming uncontrolled scar tissue (fibrosis). Here is the problem: the tissue engaged in fibrosis is all of the connective tissue. What is connective tissue, you ask? Think of all the ways a person is held together. Tissue that makes your skin stretchy. Tissue that holds your muscle fibers together. Tissue that makes up your tendons, ligaments, and the structure in your joints. Tissue that holds your intestines, heart, kidney, and lungs together. The cartilage in your ribs. All inflamed, under attack, and forming thicker and thicker layers of scar tissue. Some of this damage causes calcium deposition. Unobservable from the outside, the patient is slowly hardening inside. The most obvious symptoms is the skin thickening and then pulling tight over time.

Scleroderma, and especially systemic sclerosis, has the highest fatality rate of all rheumatic diseases. Did I mention that there is no cure? There are treatments for complications that develop like pulmonary arterial hypertension (PAH) and interstitial lung disease (ILD), but they, like the immunosuppressant drugs that many of us take, mostly stabilize and slow progression. (Dear Kaiser lady… that’s why I was getting a blood draw. The drugs that I take are risky, and my doctors need to make sure my kidneys and liver are tolerating the meds okay.)

So, what is the purpose of World Scleroderma Day? It’s to highlight this condition that impacts more people than it should even though it is rare. It’s to raise awareness of the symptoms and hopefully aid in other people getting an appropriate diagnosis. Maybe shining a spotlight on scleroderma will help in getting funding for research, treatments, and even a cure.

Sunflowers are the international symbol for scleroderma.

Here is where you can learn more about scleroderma, it’s symptoms, and treatment.

PS How was my blood work? Yay, doing okay!! Kidney function is up into normal ranges again!!! How old am I? I was born in 1951. 🙂

The Scleroderma Chronicles: Thoughts on the Night of the Strawberry Moon

There it is, the Strawberry Moon. I snapped this shot around midnight last night while the kitties chased moths on the catio.

It’s June. I can hardly believe it. June is Scleroderma Awareness Month. June is the month of thunderstorms and tornado watches. June is the month of the miller moth migration (Mateo’s favorite time of year!) June is the month that Hannah came home to live with me. June is the month, year after year, that my scleroderma begins to improve after a long, cold winter. This year June has been just great! After a very rainy May hot, sunny weather finally arrived this week and the yard began to burst into bloom. First, let me show you the weather…

Crazy weather May!! That is hail on the catio, all of that rain appeared in my pot on the deck (you can see it in the first picture… the pot was partially covered by the table above it…) in just 48 hours, and then there was an exciting outbreak of tornados just east of me. Whew! In the breaks between the storms I managed to give the lawns their first mowing of the year, and I made great progress pulling weeds out of all of my gardens. I kept thinking of a saying someone said to me recently as I worked in the yard and gardens: How do you eat an elephant? One bite at a time. How do you clear a weedy wilderness? One clump of grass at a time.

Look at how great the yard is starting to look! The grass is growing like crazy after the deep soaks, and there is lots of wildlife. I managed to get the catio all finished, and the cats and I are outside every day now enjoying the show and soaking up some sun.

Mateo is enjoying the emergence of a new, tiny baby bunny!

So, here is the crazy thing. I have been struggling big time with my symptoms. I have been unable to knit (or type for that matter) for several months now. I rely on the knitting to help me keep my hands functional, and also for mental health reasons; the loss of knitting has been hard. Even cranking the knitting machine has been too much for my healing ribs and sternum. My other joints are so bad I have spent most of my time moving a heating pad from joint to joint trying to manage the symptoms. My heart has been misbehaving again, and my lungs have been unhappy. It has been a hard winter, and I have to admit, I’ve been concerned that I may be through the tipping point and on the downward slide of my scleroderma journey.

Then June arrived.

Like magic, after every morning in the sunshine drinking my latte, after every afternoon clearing out a small section of the gardens, I have been getting slowly better. My joints are recovering. My heart has stopped having tachycardia events. My oxygen levels have improved. My hands and wrists are much better. I am writing this post. I am better. I am knitting again. I’ve started a simple summer tee in a happy pink yarn, and my wrists are letting me knit for an hour a night. I usually bristle up when people suggest that I can just get better with some sunshine and exercise, but in this case it did help.

Other fun that I’ve been enjoying on the internet is the journey of Sunny and Gizmo, two Bald Eaglets that fledged early in June from their nest by Big Bear lake in the San Bernardino mountains in California. Sisters, the two have remained with each other in various trees and have returned to the nest several times. The other fun was the adventures of Ed as he ran free in Tennessee for a week. Yay Ed!! You know that I had to cheer the zebra running wild!!

I do hope that you saw the strawberry moon. It was a happy, bright object in the sky, lighting up the back yard and the bunnies chasing each other over the lawn. The moths entertained the cats, and I sat in the dark with them on my swinging patio chair last night feeling pretty upbeat. This full moon was the last of the spring; what is coming now is the heat of summer. Usually, I kind of dread the summer heat, but last night I felt absolutely sure that I was up for the days to come. How do you eat an elephant? One bite at a time. How do you knit a sweater? One hour at a time. How do you face down the scleroderma monster? One beautiful day in the yard/catio at a time.

This is scleroderma awareness month. I went to a scleroderma conference in Denver last month, and this Saturday I will go on a fundraising walk with all of my sclero-friends. I plan to rock the teal! Bring it sclero-monster! I am ready for you!!

Friday is Hannah’s gotcha day. She is now 5 years old.

Last night I started reading the latest edition of Scientific American Magazine. The cover article is about new research that shows… wait for it… sunshine can suppress the immune system and make autoimmune diseases improve. Look at that! I’m kind of thinking that happened to me over the last few weeks. Evidently, it is a balancing act: sunshine can also make things worse. Yay! Once again, I get to use myself as an experimental animal as I figure out how much I can tolerate. 🙂

Zebra running wild!!

Hannah and the CoalBear: Shipwrecked (on Sea Glass Island)

Hi. I’m Hannah,

It has been a long time since I’ve given an update on the Mother of Cats. I know, I know… things have been going on that are hard to explain, and the Mother of Cats hasn’t been fun AT ALL lately. Let’s start with the strange things…

The house got painted! There was complete chaos around our house that went on for days! Do you see my expression when I saw one of the worker men in the window? They put plastic over all of the window, and there were all of these bumps and strange noises, and I totally was exhausted keeping the CoalBear calm through all of it. Whew. Then the painters finally went away, and the next problem became apparent…

THE CATIO WAS GONE!!!!!!

A cat tantrum is an ugly thing. Mateo is just a little cat, but he can be a little heartbreaking too when he doesn’t get his way.

She works really slowly, but the Mother of Cats has been constructing a new Catio for us. I keep urging her to work faster, but does she listen to me? She takes a day off for every day she works, and at the rate that she is making progress, it will be snowing before this gets done. The baby bunnies will be grown up and gone. The baby robins will be grandparents. I will be too old to appreciate my days out in the sun…

Mateo really, really wants to go outside to have a chat with this baby bunny…

With all of the outside work going on the Mother of Cats hasn’t been knitting very much. She did manage to get one pair of socks done, and then she made a new chicken that she took away with her on one of her trips to the doctors. Here’s the chicken.

The chicken and a couple of the babies went to the Pulmonary Function Testing lady to use with her patients. Mateo wanted to keep it for us, and I did mention that it would be kind of nice if she stuffed the little chickee with catnip, but did she listen to me? No. No, she did not! They went out to the car with her, and they stayed with the PFT lady. I sure hope that those silly patients appreciate the chickens, and if they throw the little one around that would be great! I’m pretty sure that they would like catnip, too.

So, that’s what’s been going on. NOT MUCH KNITTING! The Mother of Cats is still unable to cast on her new sweater, and while she spends time moving yarn around into interesting combinations, she hasn’t cast on her sweater. Shipwrecked. She is shipwrecked. When she isn’t fussing around outside (and we’re stuck INSIDE looking at her through a window) she is laying around with a heating pad on her knees and braces on her wrists, dreaming about prednisone, and looking at yarn to buy online. Shipwrecked. She isn’t even using her knitting machines, which at least was a little fun. This is so bad even I’m dreaming of yarn. And tuna.

This is Hannah, signing off.

Notes from the Mother of Cats:

Yep. My hands are total crap at the moment. My rheumatologist ordered some x-rays and the word “severe” appeared several times in the report. My wrists are the worst.

My knees aren’t doing very well, either, and my rheumatologist is exploring options with me. MORE DRUGS!!!! I’m a fan right now. Hannah wasn’t kidding when she said I was dreaming of prednisone. Steroids injected into my knee sound really good right now. The good news is that my lungs continue to improve, and the red flags that were raised at the time of the car wreck CT scan in December have resolved in favor of nothing serious. Yay! The changes in my lungs have disappeared, and the growing “mass” in my thyroid turned out to be a cyst. The bad news is that the follow-up CT scan in March showed that my broken ribs and sternum (fractured after all… not a shock) were struggling to heal, and I was told to lay off the knitting (and especially the knitting machine) FOR A FEW MONTHS!!!! Obviously, these medical professionals don’t understand that I need these things for my mental health. Sigh. Mateo isn’t the only one wanting to throw a tantrum lately. I don’t think that my doctors would be happy about the catio construction effort, but it is kind of an emergency!

The emotional support chicken was a huge hit at Kaiser pulmonology, and they will let me know if I need to supply them with more of the little chickees. My pulmonologist mentioned that the kids with asthma who come in for testing would love a little chickee… heal faster ribs!!! The chest pain has stopped even though I have been swinging a hammer this week, so I’m pretty sure that knitting again is right around the corner.

So… I can cast on Sea Glass, right?

<Hannah: send tuna!!>

The Scleroderma Chronicles: The 39% Imposter Syndrome

It was the third day in the Intensive Care Unit following my lung biopsy. I was sitting up in the bed, rocking all of my tubes but finally off the high flow machine, drinking a Starbucks latte and chatting with a visitor. The nurse came in the door and stopped short, taking in the scene of me, the Starbucks, and my visitor. “I don’t believe it!” she exclaimed. “They just told me all the things that are wrong with you, and I walked in here expecting to see a gravely ill person. Instead… here you are! Not what I expected!”

There I am, day three post-surgery after ditching the high flow machine for a regular oxygen line.

“Yeah, I get that all the time,” I told her. It’s the curse of chronic illnesses… you adjust and stop acting sick. Your condition is invisible, and it is too exhausting to explain to people what’s wrong when the list of diagnosed conditions is… well… exhausting. Seriously, if you say more than a couple of things it starts to sound like you’re just making things up. It doesn’t help when the diagnoses sound fake to begin with (systemic sclerosis associated interstitial lung disease… it’s called SSc-ILD for short, but still… sounds like something invented in a science fiction novel, right?). It invariably gets worse if people start to share back some rheumatic or autoimmune conditions that they know of (like fibromyalgia or Raynaud’s), and you are compelled to say… “Oh, I have that too…” See what I mean? Attention-seeking hypochondriac is sure to cross their minds. I mean, I would wonder that… It is much easier to cover up as much as you can and act normal.

I’ve been thinking about this a lot. Several patients in the support groups that I belong to have been struggling with family and friends who are unable/unwilling to accept the diagnosis. They don’t want to hear about it, they don’t want their lives to change, and there is no support. There has been heartbreak and tears, to be frank. Others in the groups have shared that their families also refuse to accept the seriousness of their condition(s) because there have been years of struggle to obtain the diagnosis, and after so many doctors have said that it’s all in your head, or, you need to control stress better, they kind of believe that. From the perspective of these family members, their scleroderma family member is just trying to milk the diagnosis for attention. To make it worse, some patients (and this is exhausting, believe me) start to list all of their symptoms as if to justify their diagnosis. It is a little desperate, and more than a little heartbreaking.

Hannah: the Mother of Cats is making a new patient in her Zoom support group an emotional support chicken!! Her family is unwilling to become involved as she grapples with the implications of her new diagnosis.

Then there is the more insidious problem: what did you do to make this happen? I have been asked that, and it usually is followed by advice about things that I can do to control my scleroderma and the resulting lung/heart complications or even how to make myself get well. The implication is, if you don’t do this (herbal treatment, sunshine, exercise, wacky stem cell injection), it is your own fault that you are sick!! It happens to a lot of us. It eats away at self-confidence, and makes me, and other patients question just how sick they really are.

I, and a lot of others in my extended scleroderma community, feel like fakes a lot of the time. Like, almost all the time!

I mentioned that to my pulmonologist last week on the phone, and he was really direct in his response: do not fall prey to imposter syndrome!!! This is really happening to you, you are dealing with it very well, but you need to remember to take care of yourself!

I had never thought of imposter syndrome in this way, but I think that his point is well made. Maybe I should have a poster made with this written on it. With some sunflowers and a tuxedo cat for interest. Every person diagnosed with a serious chronic condition needs this, because it is easy to just trick yourself into pretending that you are “better” and then the bad decisions get made. Like going off your meds. Or partying like it is 1999. Or eating all of those things that are essentially forbidden at once! There has been a rash of wailing patients in my online support groups who say things like… I went off my meds and started treating myself with natural remedies, and now [insert new symptom that has them terrified] is happening. Yep. That is imposter syndrome, hard at work. No wonder my doctor was so firm with me.

Because the point that he was making is that I am pretty ill, and I need to own it. I’m in a very small group of scleroderma patients who have the full battery of the more serious systemic sclerosis complications: pulmonary hypertension, interstitial lung disease, and diastolic dysfunction. I am being treated aggressively for those conditions, and I am doing really well, but they haven’t gone away.

I finally pulled myself together to check what the survival rates are for patients with two of my concurrent conditions (SSc-ILD-PH) and discovered that there are recent studies that looked at patients being treated with the same drugs that I am on.

This study, done in 2009 with patients on the same drug regimen as mine, showed the 3-year survival rate to be 39%. Oh, oh. Not an imposter any more.
This study, published in 2011 has a 3-year survival rate of 47%. Oh. That’s better.
A huge study done in Germany and published this year, shows that scleroderma patients with ILD-PH had the worst outcomes: the 5-year survival rate was 79%. Gosh, that is a good-looking number!

I see a trend. Do you see a trend? It looks like things are getting better and that survival rates are going up. I have to admit, when I saw that first 39% I almost panicked and stopped searching, because… I was diagnosed and started treatment for pulmonary hypertension and diastolic dysfunction exactly 3 years ago. The ILD diagnosis came in a few months later. The clock is ticking, and I am one of the 39%… talk about imposter syndrome: how can I be this functional when the majority of patients like me are already dead?? I’m a fake, an imposter!! That can’t be true, it is not true, and that new data shows what is happening: it looks like the treatment plans of today are really making a difference. My pulmonologist feels that the drug that I’m taking to control my lung disease is a game changer, and that drug was only approved for use with scleroderma patients within the last decade.

For some reason the term 39% Imposter has stuck with me. That’s me. I’m not really all that sick, because only 39% of me is pretending to be sick. Or well. Whatever works today. I’m thinking about a tee shirt with the slogan. I’m rocking the imposter persona. Maybe a shirt that says 39% Imposter and 100% Survivor…

I mailed back the heart monitor last Monday and now I’m waiting for the results. It has been a difficult three weeks because the flare just won’t go away, my wrists and knees are being bad boys, and now I have painful heart palpitations. Sigh. It is always one thing after another.

And yet, in my heart, I don’t feel sick at all.

Imposter Syndrome.

But only 39%.

Hannah and the CoalBear: The Mother of Cats is Broken (Again)

Hi. I’m Hannah.

I’ve been spending a lot of time in my box keeping my eye on the Mother of Cats lately.

Life has been so boring lately at Casa Mother of Cats. Last week the Mother of Cats noticed that she had a sore lump on her arm along one of her tendons. Then her wrist started to hurt. Then her arm and hand started to hurt a lot and her wrist got swollen, so she put a brace on it. I hate the brace because it is clunky when she pets me. I was already unhappy about the brace when she got worse, and her wrist and hand hurt so much that she couldn’t even get our tuna open!! THE HORROR!!!! She stopped letting us outside and just laid around sleeping and ignoring us. While this was going on the weather changed outside and I didn’t even get to go out to see what was happening.

All of the leaves fell off of my tree, and it suddenly got really cold. Most of the birds that were hanging around the feeder disappeared, but that ~~darn~~ cute dove and the bunny look like they are planning to hang around forever. We love to play in the dead leaves and to watch the doves, but did the Mother of Cats let us out all morning like usual? No. She did not. She just dumped out some tuna without even mixing it up properly and went back to bed. This is not the care that I am accustomed to receiving!

She spent a couple of days immobile with heat packs on her wrist over the brace, and then she had to put a brace on her other hand and said it hurt to walk. The Mother of Cats was completely broken at that point! She was such a baby about getting up to give the CoalBear and me our tuna and cookies. I had to just insist that the late-night tuna snacks arrived on time. I had to actually MEOW to get her up and moving. Lazy, lazy, broken Mother of Cats.

Slowly the Mother of Cats got better, and yesterday she managed to function without her brace all day. Today she finally wove in all the ends on her new sweater and tried it on. I tried to sleep on the sweater while she was doing that and chased the ends (hello… I’m a cat!), and it was like she was finally returning to normal. Oh. Look at that sweater. It is kind of cute. She doesn’t look all that broken today; maybe I’ll start getting better care again! Maybe she will let me out onto the catio later tonight so I can look for bunnies and even that scary raccoon.

In the meantime, I guess I’ll catch a nap.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

I have had severe flares of tendonitis before, but this one took the prize! Once it got going the inflammation affected all my other joints and even my breathing. Whew. Glad it is over: it’s been 10 days without knitting!!!
Do you know how hard it is to open a package of tuna or a bottle of Tylenol with only your left hand?
I binge watched Dopesick during the worst couple of days and ended up tearing the house apart hunting for some oxycontin that I thought I might have left over from my lung biopsy adventure. No oxy, only Tylenol. Sad me.
A friend told me that there is an insurance code for “knitting injury”. I kind of laughed every time I thought wistfully of knitting and was prevented by… bad wrist, bad!!! I had to laugh every time I considered heading into urgent care with my pretty sad knitting injured wrist…
The sweater is La Prairie by Joji Locatelli. After blocking and finishing it is everything that I hoped for.
I’m slowly easing back into knitting by using the little knitting machine to make hand warmers…
While I was cut off from knitting, I read several new books of the science fiction persuasion. My reading challenge for the year is almost completed!

Hannah and the CoalBear: It’s Sweater Time Again!!

Hi. I’m Hannah.

Do you see all this yarny goodness that I’m cuddled up with?

The Mother of Cats has taken down the sweater that was in time out (I wish that Mateo was in time out… he has been annoying all day!!) and started knitting on it again. She was a little worried about coming back to a project after so many months, but it turned out to be kind of easy for her because she had made so many notes on the pattern and even made a big knitting aid to help her keep track of the yarn colors, the pattern, and the decreases on the sleeves.

All the numbers refer to the chart rows for the pattern. The dark boxes are the decrease rows, and the numbers to left side are the yarn colors. Whew! It’s enough to give me a headache!! Maybe some tuna will help…

Anyway, she spent the week knitting away on the first sleeve and got it finished in the middle of the week. Here’s what it looks like:

Pretty cool sleeve, right? The pattern goes down the outside of the sleeve, and the Mother of Cats is soooo happy that she doesn’t have to knit too many bobbles.

She’s now working on the second sleeve and really worried about running out of one of the yarn colors. She keeps weighing the ball of yarn and saying things that I think are inappropriate for kitty ears under her breath. Poor Mother of Cats. I never stress. Well, I only stress a little. Okay, I am in the closet for hours every time a stranger comes to the door, but that is just good sense, right?

The worries about the yarn are pretty bad, so I’ve been hanging out with the Mother of Cats while she knits on the second sleeve.

Anyways, the sweater is coming along well, and I think that it is one of the comfiest knits that she has made in a while. I just love taking naps on it!! Isn’t the color nice? It really makes my coat shine.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats: That sweater is La Prairie by Joji Locatelli. I’m now in a rush to get it done before the first snow of the season. Next week is going to stay warm, so maybe I’ll pull this off!

After a phone call and then a few email exchanges with my cardiologist it was decided that I needed to wear a heart monitor for the next 30 days to rule out atrial fibrillation (AFib); evidently that is a systemic sclerosis thing, and I’m high risk to develop it because of other things going on with my heart. I did not see this coming, but it absolutely matches my symptoms.

That heart monitor is just fabulous!! The whole thing is taped on, I can wear it in the shower, and there are no leads to worry about coming loose. The monitor is blue toothed to a phone that I need to carry at all times, and it is transmitting to both the company that owns the monitor and my doctor. If I have another event while wearing it, I can send a message immediately to my doctor on the phone. Isn’t this technology fabulous? Of course, nothing has happened while I’ve been wearing the monitor, but I still have 28 days to go…