scleroderma – Page 2 – Yarn, Books & Roses

The Scleroderma Chronicles: True North

It has been quite a week. Something happened that put me into a snit that made me think about priorities all week long. Actually, several things are happening all at once and it has taken me days to sort things out. Let’s start with the snit, okay?

These are the chicken sisters, and even though they are really cute, they are the focal point of the snit that has made me rethink my priorities.

I started making emotional support chickens to give to people who needed… well… emotional support. People who are dealing with grief, or anxiety, or an uncertain future, or struggling with medical challenges. I want to send something to people like me who are dealing with something significant and life-altering that is also mostly invisible to other people. The chicken says (Ba-BOK!!!) I see you… I am here for you… give me a hug. That is the mission. It falls under the overarching mission of Knit Out the Yarn Stash Before I Die. Hey, I have a lot of yarn, so there is a sense of urgency there for me.

Well, the day I took a chicken to my knitting group seeking to enroll others to knit chickens things kind of backfired. As in, people begged me to make them chickens. Ugh. I couldn’t say no, because all of these ladies are making/giving things for others in the same circumstances as the people I gift the chickens to. I signed on to knit 5 chickens with the understanding that each chicken would require a cash donation to Frayed Knots. I knit some chickens, posted the pictures, and it was a chicken free-for-all as people reserved the chicken that they wanted.

Here they are, the first chickens looking for a new home.

Four chickens were grabbed right away. Then the problem arrived. One of the members of the board wanted the little raspberry and grey chickens, even though they were already adopted out. The words “those chickens are gone” did not work. She absolutely had to have those chickens. It was a close thing, but I did have enough yarn left over to make the two new chickens.

When I sent her the pictures of the finished chickens and told her they were done she was greatly disappointed that I hadn’t also made a black chicken that we had mentioned while she was debating her options. (Listen, she decided on the two chickens instead of that black hen, so this was a shock!) I told her that I didn’t have the yarn to make that chicken in the stash. She told me that she would buy the yarn. I was like… NO!!! Please do not buy me any yarn!

Overarching mission: Knit Out the Yarn Stash Before I Die

Which has kind of been on my mind since my heart is kind of acting up right now. I am having sudden attacks of extreme breathlessness with chest pressure and dizziness. My oxygen levels seem to be okay, but my Fitbit has been sending me alarms when it happens. My fatigue has gotten much worse and it kind of hurts to breath sometimes.

The really crazy Fitbit shot with lots of peaks happened when I tried to knit a chemo hat on my little knitting machine. I mean, making hats while trying to control the cats is stressful enough, but the constant Fitbit alerts are just piling on at this point!

See the quality help that I’m getting while making the hats?

I seem to do much better if I wear oxygen while working with the machines, and I get fewer alerts while working on the smaller knitting machine making fingerless mitts.

So, it was a week of internal conflict. The lady who wants a black chicken is still not happy. My heart is not happy. My yarn stash is not shrinking, and somehow the joy of knitting chickens is gone when I have to make them in the exact colors that other people want. It is a chore when I don’t get to be creative, especially when I know that the chicken is going to someone who just wants a chicken, as opposed to someone who needs a chicken.

Hannah: On Friday the Mother of Cats pulled herself together, reset her priorities, and took some action!

Friday morning, I woke up, made my latte, sat outside with the cats, and decided to push the tiller over and return to a course of true north. I will remember my overarching mission statement, and I will do the things that help other people like me: people with chronic conditions that are isolating and mostly invisible to others. I will spend my time doing the things that feed my own creative spirit and my need for a sense of purpose.

I emailed my rheumatologist to ask if she would like fingerless mitts to give to other rheumatology patients. The answer came back in less than an hour: Yes, please!!!! I have my purpose again, and knitting out the yarn stash is back in business.
I emailed my cardiologist to let him know what was happening and attached the Fitbit pictures.
I took down a sweater (La Prairie) that has been languishing for months and started in on finishing the first sleeve. Gosh, it is going to be cute. Time to knit for me again!
I packed up the chickens to deliver to Frayed Knots. Those chickens are the last ones that I will knit for people who want chickens.
Saturday, I handed the chickens over to the head of Frayed Knots and asked her to please explain to the lady who desperately needs a black chicken that I’m done knitting them. The words I used were, “I’m not in the chicken knitting business, I’m in the emotional support business.”
I then sat with another member of the group and helped her knit her way through her first chicken. Suddenly, two other people wanted to learn. Yay! I am there for them!! Eventually, I am going to get some chickens into infusion centers for the patients!!

I have two little bracelets on my wrist with the Fitbit.

What was it that helped me pull things together Friday morning while drinking my morning latte? Those two little bracelets on my wrist in scleroderma teal. The little silver spoon was given to me by another patient, and it symbolizes the balancing act scleroderma people go through to manage our fatigue. We are “spoonies”. I need to remember to be ruthless about managing my own energy and resources. The teal beaded bracelet has a silver strip that says, “Remember Who the Fuck You Are“. Yes. I need to remember to not let other people run me over with their needs, because… limited resources. I need to set my own priorities with my limitations and needs in mind. I also need to remember to be brave, to face down the monsters, and to let my doctors know when new symptoms appear.

Just like that, I found my way again.

True North.

Chickens are taking flight…

It has been kind of busy lately at Casa Hannah and the Coalbear. I’ve been meeting people for chicken hand-offs every few days. I built a new coffee table, worked some in the yard, and then there is the heat. Ugh. The heat. We’ve been trapped in a heat dome for days, breaking records day after day, and the cats and I are all suffering a little with it. It is harder to breath in hot air, but my joints are curiously okay with all of this. I stay outside until noon each day letting my joints bask in the heat, but predictably, the cats abandon the deck/catio long before then. I find them stretched out on the cool tile of the kitchen when I come in, waiting for their tuna. The cats are absolutely over this heat!

Hannah: Maybe it is a little cooler in here…

Before I talk about the yard and the heat, let’s talk about the chickens! I’ve been meeting up with people for a chicken handoff all week, and these chickens have all flown away to their new coops. Here are the chickens that left this week:

That’s right. Five emotional support chickens flew out of here, and tomorrow I hand off another teal chicken knitted to match the one in the picture. My favorite ESC in the whole bunch went to my son: it is made with handspun yarns from sheep that he and I met when we worked a shearing day for the Rocky Sheep Company years ago.

The black/grey marled yarn is from a sheep named Petunia, and the jet black is from a sheep named Clint (Black). I used some Malabrigo Rios for the red bands because it is too darn hot to dye yarn right now! Isn’t this a spunky looking chicken?

Yesterday I cleaned up and sorted out all of the yarns again, and I’m ready to launch into more chicken knitting just as soon as I finish the chemo hat for a scleroderma patient participant in a CAR T-cell therapy clinical trial in Seattle: that needs to go out the door this week. Whew. Lots and lots to knit. I feel pretty motived because a thank you note was emailed to Frayed Knots by a cancer patient thanking me for the “wrist warmers” that she received. I think that she must have been given two PICC line covers, but that note made me realize that I need to be even more productive. As if to nail home the lesson, a couple of the people that I met up with this last week mention how much they struggled with cold and painful hands. Yeah. I need to get cracking on wrist warmers.

I bought a cute little knitting machine that is perfect for churning out wrist warmers!! This is the Addi Express Professional Knitting Machine, and it was on sale. Yay!!

Okay, I bought a big knitting machine that will make hats too. I need to have some way to use up all of this yarn that I have stashed away, and now that I am knitting chickens like crazy, I feel bad that I’m not producing hats and stuff for Frayed Knots like I was. Hopefully, these machines will let me step up my game some.

Hannah: Mother of Cats!! Talk about how hot it is and mention all the birds in the yard!!!!

Okay Hannah: back to the heat. For some reason the potted flowers on the deck are doing exceptionally well in the heat, and the yard is full of life. I’ve been making an effort to keep the water trays full, and the bird feeders have become quite popular. Look at what the flowers have been up to:

The single flowering spear in the middle is the Spanish Lavender finally starting to bloom. I’d almost given up on it, but both plants have suddenly sprouted those buds. All of the potted roses are covered with blooms, and the other lavenders have all started a second blooming. There is so much life out in the yard I replaced a window screen so Hannah can spend the early evenings watching for bunnies. (Why did it have to be replaced? One word: Mateo)

In the mornings the cats and I hang out on the catio watching the wildlife. Here’s the view from behind the chicken wire:

I especially like the blue jays that are hanging out in the yard, but there is a constant line-up for the hanging feeders. So fun. Cheap cat entertainment while I’m drinking my morning latte out on the deck/catio.

Hannah: Finally! Today it started to cool off.

As Hannah has pointed out, the heat breaks today, and it will be closer to normal temperatures for the rest of the week with rain possible each day. I’m hoping that this is the Colorado Monsoon arriving at last, certainly my lawn is hoping that there will be rain on the way.

Bye everyone. It’s time to fill the bird feeders again.

Note: Who’s getting these ESCs? My family, of course. Several have gone to systemic sclerosis patients. One went to person who retired earlier than she had hoped to, and another went to a person coping with a serious genetic disease. Two people are struggling with anxiety. One to a cancer survivor whose chemotherapy triggered scleroderma. I still haven’t gotten any chickens knitted for the infusion center…

Must knit faster!!

The Scleroderma Chronicles: A Decade on the Little Teal School Bus.

Here it is again: World Scleroderma Day.

June 29th is World Scleroderma Day. In Australia sunflowers are used as a symbol of scleroderma. Almost everyone uses the color teal for scleroderma.

I used to be a high school biology teacher before I became a scleroderma patient, and I took my students on field trips sometimes. We would all pile on the bus and off we went on one adventure or another: into the mountains for an ecological assessment, or to the Natural History Museum for an anatomy lesson, or a visit to a biotechnology center, or even off for the weekend to study for the Biology AP Exam. It was always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.

Lately I have been thinking about my illness as a ride on a little teal-colored school bus with a crazy rainbow striped zebra behind the wheel. That dang scleroderma zebra is careening down the road on its way to an unknown destination just over the horizon, and would you believe it, he keeps stopping to pick up more passengers along the way.

Don’t make fun of my bus! I changed the colors on some clip art that I found, and putting a zebra behind the wheel was beyond me!! Use your imagination… the zebra is braying hysterically while driving the bus!

When the bus stopped for me, and I stupidly jumped on board, I only had a few symptoms. I had some trouble swallowing sometimes. I had GERD. I suddenly lost circulation in my fingers if I got cold. Speaking of my fingers, they were pretty fat and puffy. I had lots of red blotches on my face, and the skin was pulling tight. It was hard to open my mouth wide…

Still, I was feeling pretty hopeful as I jumped onto the bus. “This will be fun!” chortled the scleroderma zebra. Bad zebra, bad!! Before I knew what was happening, that dang striped miscreant had pulled the bus over, opened the door, and couple of little demon passengers had hopped on board: kidney disease and gastric complications. What kind of an outing is this… have you ever heard a zebra laugh?

Bouncing down the road, suddenly screeching to a halt periodically to pick up a new passenger, the zebra continued the crazy outing in the little teal school bus. The little demon passengers kept piling into the bus, and those little monsters even started to sing “the wheels on the bus go round and round…” while laughing and clapping. What kind of a field trip is this, anyways?????

The demons all wore little nametags:

Gastroparesis
Pericardial effusion
Chronic respiratory failure
Diastolic dysfunction
Pulmonary Arterial Hypertension
Interstitial Lung Disease
Heart Failure with preserved ejection fraction

“STOP THE BUS!!!!” I shouted at the zebra! “I absolutely did not sign up for all of this sh*t!!!!” Nope. Evidently there is no stopping the bus. Ten years on the road, and we are still on our outing. Somehow some extra demons that don’t even wear nametags snuck onto the bus, but they are certainly annoying as they are making all my tendons hurt and what is up with all this edema!!!! Did I mention the fatigue? Always, always there is fatigue. That fatigue demon is sitting on top of the bus blowing raspberries at all the other people on the road…

It has now been a decade for me on the little teal school bus: always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.

I learned about prioritizing and not worrying about things that haven’t happened yet. I learned to advocate for myself, and I have maneuvered myself into the care of some great doctors. I have learned to build for myself a network of supporters. I pretty much have lost interest in making money, but I’m highly motivated to help others. I’m keeping notebooks and collecting souvenirs while on this field trip, and to be frank, it is the outing of a lifetime. Believe it or not, I’m now singing along with the little demons on the bus with me…

The wheels of the bus go round and round… and the zebra is still laughing its head off… and I’m okay.

Happy World Scleroderma Day.

Note: Scleroderma (systemic sclerosis) is a rare autoimmune disease that is chronic, progressive, and often fatal. It has three main hallmarks: damage to blood vessels, the development of autoantibodies, and subsequent scarring of tissues and organs. Right now, while there are many excellent treatments emerging to handle the serious complications due to the underlying disease (like my pulmonary arterial hypertension and interstitial lung disease), there is no cure. You can learn more about scleroderma and systemic sclerosis in the links below.

Hannah and the CoalBear: Chickenitis Explodes!!

Hi. I’m Hannah.

These big fat bumblebees have been coming to the little garden by the deck every single day this week. I just love them! They are so fat and slow. They are fuzzy and look just like a cat toy, right? They come right up to the wire to climb into the flowers, and I got my paw out and onto one of them this morning; he just bumbled off to another flower. These guys are awesome!!

The Mother of Cats is doing much better and hasn’t worn her wrist braces in days. She finished up the knitting on one of her Emotional Support Chickens (ESC) and then spent a couple of days sewing them up. One chicken was done Saturday morning, so she took it to her Frayed Knots knitting group to show it off to the other knitters.

Isn’t this kind of a sweet little chicken? Her colors look like the colors of the garden where the bumblebee hangs out.

The Mother of Cats wanted to show off the chicken because it has been a big hit with her scleroderma support group and at the Kaiser infusion center last month. Everyone wants a chicken!! Like… four of the members of her support group want one, and she figures that the infusion center should get a least a couple. The Mother of Cats is kind of thinking that lots of people who are having a hard time (like, the families at the Ronald McDonald House, or at other infusion centers) would like a chicken. Yeah. It was a good idea, but she lost control, and things went crazy really quickly… the chicken got passed around and people hugged it. And hugged it. One lady wanted to keep it. The Mother of Cats got requests for FIVE more chickens and was asked to think about teaching a chicken knitting class for some of the ladies. One of the ladies swore that she could get chickens sold at craft shows up north (in Boulder, Colorado) and the money could be used to buy items for the personal care packages that are created by the Frayed Knots volunteers. Another lady asked for the pattern so she could start knitting chickens too…

Yeah. A little out of control. The Mother of Cats now has a spreadsheet going with 17 chicken requests on it.

So, the Mother of Cats got cracking and sewed up two more chickens. Now she has three done and ready to go out the door. There are two more little ones knitted that need to be sewn up, but her wrist voted NO!

Today she wound up a lot of yarn (luckily, she had bought all the yarn earlier in the month…) and she is torn about what color to knit next. Maybe it is time to make a chicken that is knit in all solid colors. Should she use some fluffy alpaca? She still has some beads that can go onto another chicken. Whatever… she needs to just get to work knitting and somehow the chickens will all find a home, right? Obviously, the need for emotional support chickens is real.

Unless there are bumblebees. They are almost as good.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

I woke up to a text this morning: another request for an ESC. A pink one, please.
The pattern is Emotional Support Chicken, and it can be found in knit or crochet versions on Ravelry.
Here are the official portraits of the three chickens. I have to send the pictures out to people so they can pick their chicken.

The Scleroderma Chronicles: Resilience

I’ve been thinking about resilience today after this graphic showed up on my Facebook feed.

What is SPIN you ask? It is the Scleroderma Patient-centered Intervention Network.

I’m pretty sure that I was one of the patients in this study. Certainly, I was a participant in a SPIN clinical research study during which I filled out lots of questionnaires about my illness. The focus of the project that I was enrolled in was to see if online educational videos about scleroderma, possible interventions to help with the progression of symptoms, and information about resources could help patients in how they coped. I was tracked for over a year to see how I was doing. How was my pain? How was my sleep? Was I depressed? How severe was my disease, and how did I feel about that? Did I have issues with anxiety? What were my scleroderma-associated complications?

Not surprisingly, the study referenced in the graphic found that they could break patients into 4 groups based on the severity of their disease (Low -> Very High). They found, for the most part, as patients dealt with an increasing disease burden, they coped less well and struggled with depression and anxiety more.

Except for one group of outliers. They had a pretty significant disease burden, but they were not depressed and didn’t struggle with anxiety. They kept rolling with the punches and finding ways to flourish even within the eye of the storm, securing for themselves a better quality of life than others facing the same challenges. I’m pretty sure that I am one of the people in this group of outliers. I remember that I reported that I was having lots of trouble with pain and sleep disruption, but no depression; my current battery of scleroderma-associated complications should put me into the High disease group. Here is a paper where the researchers further investigated the association between disease burden and mental health and resiliency.

I bought myself little roses last week. Look at how cute they are! They are under a red light, but you can still kind of see that they are a peach color.

So, the big question that the researchers are now pursuing is what determines resiliency, and how can these essential coping skills be conferred to other systemic sclerosis patients through training and support.

So, what is resiliency? That was the big question of the day for me as I worked out front weeding a garden. Working outside is now hard for me, but I dragged out a little chair to sit on, put my tools into a crate that was easy to push, and I slowly worked my way along the front walk cleaning up my garden and pulling out weeds. I had to take breaks to pant from time to time, but by the time I was done the gardens looked great! The weather was perfect, there were lots of birds, and one of my neighbors had music playing while he worked in his garage. After a little break on the catio with the cats (coffee and a lemon bar time!!), I strapped on my portable oxygen concentrator and mowed the front lawn. I’ve had a hard week, and I struggled to get myself outside to work in the yard, but by the end of all of this I felt much better. You might even say I felt happy.

Look at how nice the front pot of flowers is looking! I bought a new rug to put by the door onto the catio, Amazon delivered it today, and Hannah moved right in. Yay! Take that scleroderma!! I win the day!! I am happy!!!!

So, what is resiliency? I’m still stuck on that question. I’m pretty sure that it is a state of mind that allows people to focus on what can be done instead of what has been lost. Resiliency allows people to embrace their changing circumstances and effortlessly employ life hacks to get things done while acknowledging that other things are now too much. It must have to do with an ability to name the monsters, stuff them into a box, and put them on a shelf (in the back of the yarn stash) while activating self-advocacy. It must require faith that you will be able to cope with scary things when they come, while still recognizing that you are in a difficult situation. It must require support and resources. I think it has to be an internalized quality: resiliency gives you the self-confidence and self-worth that’s necessary to face down medical authorities and to ask for ~~demand~~ help and answers.

I look forward to what these researchers find as they continue looking at the phenomenon of the outliers: patients dealing with a severely debilitating and isolating rare disease with grace.

I kind of think that they will discover that these people have engaging interests that allow them to have a sense of accomplishment and purpose. I bet that they find that they have pets and people that they love. I bet that they produce something of beauty in their lives. I am almost certain that they will find that the outliers have found ways to communicate in a positive manner with others about the challenges of life with a progressive, and often fatal disease.

Why am I resilient? I have cats. I have yarn. I have curiosity and lots of resources to chase it. I have purpose as I produce donated items for others in difficult situations. I have roses. I have people who love me, and I have people who read my little posts about coping with life on the down slope of systemic sclerosis.

Thank you for being part of my resiliency system.

The Scleroderma Chronicles: Rare Disease Day 2024

Rare Disease Day is tomorrow, but since I’m going in for a lung scan on the 29th, I thought I would post this now.

Well, here it is again. Rare Disease Day. This is my 9th year posting about rare diseases: on August 28, 2014, I was diagnosed with a form of scleroderma called limited systemic sclerosis. This condition, autoimmune in nature, is progressive as multiple organs, blood vessels, and the skin of the patient (that would be me) stiffen and harden due to scarring (fibrosis). It is also considered rare, since fewer than 200,000 people in the US are currently diagnosed with it.

So, what’s up with the zebra? Well… in the medical community doctors and other health professionals are trained to focus on the most common cause for the symptoms that they are seeing in their patient. The saying goes: when you hear hoofbeats, think of horses, not zebras. Certainly, that makes a lot of sense in terms of patient care and cost control. It works most of the time.

Unless, of course, you are a zebra.

Life is challenging if you are a zebra in a herd of horses. Doctors screen for the most likely cause of reported symptoms, and then when those tests are negative, you usually get told that you are fine, and then you are pawned off with some pablum like… do these exercises… try to reduce stress…would you like anti-depressants?… Seriously, it is pretty crushing as you start to wonder if you are just an attention-seeking hypochondriac since for the most part you look great. In my case, I didn’t even appear to be aging…

This can go on for years. And years. Autoimmune conditions like mine tend to send patients with vague complaints (I hurt all over…) to the doctor’s office looking for help. Some of the symptoms can be so subtle that you just don’t think to mention them to the doctor because you already feel pretty defensive about complaining after a few borderline disparaging interactions in the past. Why mention that you have trouble swallowing sometimes? Or that your arm is starting to look like Flipper the dolphin in appearance and texture? Some new red freckles have shown up on your face, but why mention them when you really want to get to the bottom of why you hurt all over and what is up with this fatigue????? Sure, there were those carpal tunnel surgeries 10 years ago, and the hospitalization for gastritis last year, but why would you mention them… When I was finally diagnosed, I discovered that I was absolutely classic and presented with all five of the CREST features of limited systemic sclerosis. Oh, one more thing: lack of wrinkles is a red flag for scleroderma…

You can see two of the CREST characteristics here. I’ve lost circulation in my ring finger as a result of Raynaud’s, and the thick (sausage-like) fingers that are trying to contract are examples of sclerodactyly. The other distinguishing symptoms are trouble swallowing, lumps of calcium deposits on some of my bones, and those pesky red freckles that are now appearing everywhere. It was official: I was a zebra. There are a lot of us.

Rare diseases are also known as orphan diseases. They are poorly supported and most of the time there is no treatment. After failing a chemotherapy drug, I was moved to an off-label treatment using an immunosuppressant drug developed for kidney transplant patients. It was hard to get the drug as it was declined by my insurance, then the appeal failed, my doctor filed another appeal, and I went to see the pharmacist with a pathology report showing extreme gastritis. It was a fight, but I got the drug. This drug, Myfortic (mycophenolic acid), has proven to be so effective in slowing disease progression that it is now approved for systemic sclerosis and is a drug of choice along with its close relative CellCept. It has been doing a pretty good job at slowing things down; at the time of my diagnosis the 10-year survival rate was about 50%. Now that there are some better treatment options the survival numbers have improved: 10-year survival is up to 70%.

Two years ago, I developed two of the more serious complications of systemic sclerosis (SSc): pulmonary hypertension and interstitial lung disease: two more rare diseases. Not good news at all; my pulmonologist told me it would be okay to cry as he showed me my lung scans and gave me the bad news. Remember that little word “progressive” that I used to describe SSc? This is disease progression; the inflammation and formation of scar tissue (fibrosis) had hit my lungs and heart, and my have doctors responded with big time drugs. Yes. Big time and pretty expensive drugs. Over the last few years, literally in the time since I was first diagnosed, drugs have appeared that can greatly improve treatment and life expectancy in patients like me, and there are more drugs in the pipeline.

The first drug that can be used to directly treat SSc just moved from orphan drug status to the fast track. This is serious, serious good news. I looked into entering a clinical trial for this drug, but my doctors thought that I wasn’t a good candidate because I have too many complications right now. Seriously, I have been slotted into a diagnosis called SSc-ILD with PH which means that I am a SSc patient with interstitial lung disease and pulmonary hypertension. Good grief, I’m now a walking bundle of acronyms. That’s okay. I can hang on, help is on the way!! FT011, I am waiting for you!!!

So, what is up with all the colored stripes?

Serious medical conditions usually have an awareness ribbon color. It is a little cheesy, but if you are dealing with scary stuff, why not have some fun? Be a zebra, color your stripes in your awareness colors, and get yourself some fun t-shirts while you are at it. Eat Zebra Food (that would be black and white striped caramel popcorn to you non-zebras), get colored medical bracelets, and collect the stuffed animals. Zebras, of course!! My zebra has teal stripes (scleroderma), periwinkle stripes (PH) and purple for the ILD. Lung disease in general is green and blue. I also get purple for my Sjogren’s and fibromyalgia, and don’t forget the red for my heart failure. I’m a rainbow zebra!! Yay!

Okay, time to get serious. What is Rare Disease Day about? Raising awareness in the public about the challenges of living with a rare disease. There are a lot of people who have rare diseases, so by sharing our faces and voices the hope is that it will help make us more visible. We hope that a more educated public will aid in the diagnosis of others with rare conditions. (See above; diagnosis can take years. It would be wonderful if that could be sped up a little…) We hope it will help with funding for drugs, treatments, and maybe even cures. We hope that for those with invisible conditions, they will become more visible and supported. We hope.

To learn more about my rare conditions and others you can go to:

To everyone who battles on against scleroderma or any other serious medical condition, rare or not, I see you. Hugs! Shine on, my friends, shine on!

Hannah and the CoalBear: So, we have had a couple of tough days…

Hi. I’m Mateo.

I’m being cute so I can get more attention…

The Mother of Cats has been ignoring us for days and days. I mean, our food bowls were almost empty, and she ran out of tuna over the weekend. I seriously question her fitness as a pet parent at this point…

Do you see this? I absolutely did not deserve this either!!!

First it snowed. Like kind of a lot of the wet sloppy stuff. Hannah refused to even go outside on the catio, and I could only stay a few minutes without getting covered in the white stuff because IT KEPT FALLING OUT OF THE SKY!! The Mother of Cats wasn’t letting me out all that much either because for the most part, we couldn’t get her to get out of bed. Seriously, she is the laziest human on the planet. She just stayed in bed listening to books, sleeping, working on her computer, and basically ignoring all of our needs. Finally, it stopped snowing, and the sun came out again. Like magic, the Mother of Cats also started to pay better attention to us. She charged up the laser friend that Hannah likes to chase and ordered me more toys from Amazon. Also, she had some tuna delivered because we needed it DESPERATELY!!

Once she was back into the kitchen, she made more of that crazy squash soup that she likes and spent some time playing with the lemons that her niece sent her. She cut them all up and put them in the countertop oven on the dehydrate setting for hours. Kind of a stupid thing to be doing when I NEED TO GO OUTSIDE AND SEE BUNNIES!!! Luckiy, she had taken care of the tuna issue already… I’m a good boy, but I do meow in emergencies!

Now she can put lemon slices into her tea while she is being lazy in bed and ignoring our needs. Thank heavens the new toys arrived, and the laser friend kept working because I never got to see any bunnies or squirrels or anything for the whole weekend.

The only other thing that she did last week was to set up an experiment with dirt and seeds and stuff.

The Mother of Cats collected the seed pods from her roses last fall, and they have been out in the cold of the garage ever since. She carefully planted half of the seeds and put the trays onto a warm pad on the floor because Hannah pushed the trays onto the floor from the table in the craft room. Silly Mother of Cats, doesn’t she understand that they needed to be on the floor in the first place?

Hannah: I was just trying to help out! I take the covers off the planter trays too so I can keep my eye on things.

Now the rest of the seeds are chilling in the refrigerator that I like to shove my toys under where they are going to stay for another few weeks. They will get planted then if the first seeds haven’t sprouted. She also put milkweed seeds into dirt that is out in the cold of the garage or outside under the snow: another experiment! She likes to do stuff like that. I think that she would be happier if she played with chirpy toys instead, but what can you do. I’m only one cat, and she is a lot to handle, let me tell you.

This is Mateo, signing off.

Note from the Mother of Cats: The barometric pressure really dropped quickly when the snowstorm came in, and I evidently developed a bit of pulmonary edema when that happened and gained almost 8 pounds in two days. Friday night I realized that I was dizzy and having trouble breathing: diuretics to the rescue!! It has taken several days to get the weight back down and I’m breathing a lot better now, but the cats sure were neglected while I was in bed on oxygen dealing with it. Just another scleroderma adventure…

Also, Amazon delivered the tuna and the chirpy toys overnight. Yay, Amazon. It is good to live in a city with a fulfillment center…

The Scleroderma Chronicles: Toxic Positivity and American Symphony

I’ve been pondering the concept of toxic positivity for some time now. You know, people who insist that a person with an uncurable, progressive disease (ahem… systemic sclerosis) can get “better” if they just get some sunshine and exercise. People who suggest that the symptoms of a failing heart and lungs are “just old age”, or that debilitating brain fog is something that everyone deals with. People who keep suggesting possible cures of the herbal or holistic medicine variety, or that if I just try hard enough, I will magically go into remission and get well. People who insist that no one knows what will happen when you disclose serious new complications, or people who over-celebrate a small gain. I know that they mean well, but it is isolating and hurtful: it is a denial of my reality.

I lost my temper and snapped off at one particularly obnoxious person at a holiday function who was arguing that I just needed to stay positive and try harder so I could get better… “there is no better, there is only this”, I told her. She was taken aback, and then doubled down and insisted that people do get better if they try. In my defense, I should mention that she had also just told me that her daughter’s diagnosis of a serious illness was awful because her daughter was young, but what was happening to me wasn’t such a big deal because I was old. Yeah. Toxic. My doctor told me that she was lucky that I didn’t hit her. I love my doctors!

Okay, having said that, I am better these days. I seem to have emerged from the worst of the fibromyalgia flare and the horrible dizziness, brain fog, and pain have receded to background levels again. Yay, magnesium!!

So, why is toxic optimism a problem? Well… toxic, right? It’s a denial of what is actually happening while throwing up walls that distance and protect you from the painful thing that is happening. It’s ensuring that you won’t get involved. Some of those walls are an insistence that the person will get better, or they aren’t actually all that sick, or that this is “normal”, or even suggesting that somehow the person is actually at fault for their own illness/condition. Not helpful, people. I was already thinking about how to frame this in a post when an article from The Atlantic called Tragic Optimism is the Opposite of Toxic Positivity arrived in my news feed several days ago. Okay, this is close to what I’ve been thinking about, but tragic optimism isn’t exactly what I’m trying to achieve here. No tragic, okay? In my mind the process of flourishing in the face of adversity requires grace and courage: walk into the darkness, face down the monster, deal with it (severely), and then continue to thrive and shine (like a sunflower, goddammit!) from within the heart of the storm.

So, it was kind of amazing when I watched American Symphony last night on Netflix.

This is what I’m talking about. It was hard to fight back the tears as Jon Batiste and Suleika Jaouad put into words and action the things that I’ve been thinking about, but so much better. Jon Batiste says… “look into the darkness and despair, face it, but don’t let it consume you.” YES!!! This is what I’m talking about, people. “Accept the possibility that you might fail, but absolutely believe that you will succeed,” Jon says in the film. Without any doubt, Jon and Suleika are at turning points in their lives: they have just married, Jon writes and produces a symphony that is to be performed at Carnegie Hall, and Suleika undergoes a second stem cell transplant to treat her relapsed leukemia. I know people who have undergone stem cell transplants (it is used to treat extreme cases of systemic sclerosis too), and it is a lengthy, horrible process of dancing with death while hoping for life at the end of the tunnel. This is a raw and emotional documentary of extremes; for this young couple, they are navigating the highs and lows simultaneously. The stress is crushing, and the emotional toll is heartrending. In spite of this, they cope, they walk into the darkness and face down the monster, they shine from within the heart of their storm, and the documentary ends with the performance of American Symphony at Carnegie Hall with Suleika in attendance.

In my opinion, every significant battle begins with the thought… okay, this is happening. Recognizing your situation is not a sign of weakness, but of strength. The action plans, sense of purpose, and the ability to keep rolling with the punches comes later. There is no place for denial if you are going to battle! Also, as this couple shows in the film, you need some creative outlets if you’re doing battle. Suleika paints and Jon composes. I take yarn along.

Today I started listening to Suleika’s story of her first dance with leukemia and the recovery afterwards.

I’m not sure that these two would embrace tragic optimism, but they sure are shining examples of the opposite of toxic positivity. I think that I’m going to be learning things from Suleika while I listen to her reading her book, knitting away on my new sweater. With my newly blooming orchids. And my cats. Within my own little scleroderma storm, the monster locked safely away in the cupboard. Pipe down, monster. I’m knitting now.

The Scleroderma Chronicles: Thoughts on the Night of the Blue Supermoon…

Did you look at the moon tonight? It is just huge, shining in the night like it knows that it is something special. Well, it is. This is the Blue Supermoon of 2023, my friends. Not to be seen again for 14 years. Just the sight of it makes me feel happy.

This is also the anniversary of the day that I was told that I had systemic sclerosis and Sjogren’s Disease. Actually, it is 9 years and one day since I drove to my first rheumatologist appointment; I was a little emotional that morning as I passed fields of beautiful sunflowers, their faces glowing in the light of the morning sun rising behind me. You’d think that the date would be kind of a bummer, but nope. As it turns out, there are lots of things that are making me feel happy at the moment.

Do you see that black bag with my purse and cane? That is my portable oxygen concentrator!

That’s right, after languishing for 18 months on the waiting list, my name came up for the portable oxygen concentrator that I have been desperately needing. Look at that baby!!! It only weighs 5 pounds, it works great, I can adjust the level of flow on the fly, it can charge in the car, and it is exactly what I need. Yay!!! I got it yesterday on the exact 9-year anniversary of my diagnosis.

So happy, feeling absolutely empowered, I headed to the yarn store after picking up the concentrator. Time to take this baby for a spin, right? I have been struggling for months to make a decision about the yarn for the La Prairie cardigan that I want to knit next. I bought a kit of yarn to make the cardigan, but I’m not happy with it. I needed a new skein to go into the mix…

The yarn picture on the left is the original kit. The one on the right is the new variation that I’m not completely happy with. Feeling hopeful and more than a little determined, I sat on the floor in front of the most likely candidate yarns and, rocking my new O2 concentrator, holding up my phone with the yarns on the screen, I kept looking at different ideas for the fade…

Winner, winner, chicken dinner! I suddenly realized that the Stitch Together yarn (second from the top) was exactly what I was looking for. There it is. I asked others in the store what they thought, and the consensus was that I had nailed down my fade. Yay!!! Finding that yarn made me happy.

So, I also bought the special edition Babe set from Spun Right Round.

I’m going to make that Barbie pink yarn into hats for the community knitting group that I knit for because… wait for it… the color makes me happy!! I had one of the original Barbie dolls, and just the thought of Barbie makes me… happy!

On the way home from the yarn store, still sucking down oxygen in the car and feeling pretty good, I stopped at the grocery store to buy some tiramisu because I was absolutely having a tiramisu kind of day, and there at the front of the store were sunflowers. You know, it is the end of August, and it is sunflower time. Shine like a sunflower!!

Pretty good looking, huh. Sunflowers are used as a symbol of scleroderma hope in some parts of the world (Hello, Australia! Talking to you!), and you know I bought these too.

By the time I got home I was tallying up all of the things that made me happy. The leaves are starting to change on the trees in town, and the ornamental grasses are covered with rich golden plumes atop bright green stems. That makes me happy. Pumpkin spice is back at Starbucks. The kittens loved the new toys that I bought them. I ordered new clothes this week that fit great even though they are a smaller size than usual. I found new shoes to wear that are really helping a lot. Happy. I am happy.

The shoes are shaped like walking boots on the bottom, but inside there is great arch support and a cushy insole. I am walking now with much less pain. Did you notice the purple detailing and the silver loops for the laces? Happy. These are happy shoes.

Once home, I headed outside to the catio with my yarn, the tiramisu, and a cup of coffee from my new Keurig machine (yep… happy), and as I set the plate and coffee cup on the table, a pair of adult cottontail rabbits raced around the corner of the deck and zoomed under my side gate. Looks like I will be having baby bunnies again. I am happy.

Nine years ago, I asked that first rheumatologist what my life would be like in five years time. He refused to answer, and it was my first clue that I might be in some trouble here. 18 months ago, my pulmonologist told me it was okay to cry when the first lung scans showed serious interstitial lung disease. One year ago, my pulmonologist told me that they were very worried about me after my lung biopsy… nothing was working, and he wasn’t sure I’d make it. Last month, the technician who did my latest pulmonary function test told me that I was too bad to walk any longer without portable oxygen. I came home, looked at the bottles that are too heavy for me to carry, and cried.

Tonight, under the blue supermoon, with sunflowers on my table, I am happy. One month later, I have my portable oxygen. 18 months later, my lung disease appears to be stable. 9 years later, I’m still here, rolling with the punches of new complications, facing down the monster, and finding ways to shine.

I am happy.

Shine on supermoon, shine on.

Hannah and the CoalBear: Trail? What Trail?

Hi. I’m Hannah.

This has been a kind of strange week. The Mother of Cats came home on Monday after spending ANOTHER WEEKEND WITH THOSE KITTENS!!! and then she tried to make it up to us by being really nice all week. She fed us tuna twice a day and played with Mateo with the laser light more than usual. Like that would make up for sneaking off to spend time with these furry little guys instead of US.

Okay, they are kind of cute. Still, they aren’t as cute as Mateo and I were at the same age. Just saying…

Anyway, back to the strange week. The children in the neighborhood all went back to school (whatever that it…) this week and it suddenly is quieter in the backyard. A huge flock of geese flew over the yard yesterday, and today the Mother of Cats noticed that some of the berries on the bushes are turning red. The squirrel is more active than usual, and the moon was out in the daytime. Crazy, right? Here are the pictures.

The Mother of Cats is also excited about something called Pumpkin Spice. Is that a type of tuna?

Anyway, let’s now discuss the Mother of Cats and her COMPLETE ABANDONMENT of the Sharon on the Trail MKAL. She didn’t even bother to open up the emails with the pattern updates. She says that she hates her yarns, and she doesn’t love the pattern, and she just wants to knit the stuff she already has and to make some little knitted kitties to give away. I’d be concerned about her, but she is really happy with the stuff that she is knitting now, and I have to admit that it is looking good.

She put her sweater back onto the needles this week and got several inches of the body knitted. Looking good! She says that the funky looking new stitches are that way because they aren’t blocked yet. Mateo isn’t convinced.

Mateo: I’ll reserve judgement until I see that new knitting blocked. Call me Doubting Mateo.

She really spent some time on the new socks that she is making, and she really likes the way they are coming out. I think that has something to do with how she just UP AND ABANDONED Sharon from Security in her quest to apprehend that villainous Keith…

She likes these socks so much she is already dreaming of which yarns she will use to knit the next pair with. Poor Sharon, I’m pretty sure that the Mother of Cats will never return to the trail. She has her eye on some purple yarns for the next pair of socks…

Well, that is it. I hope that you all had a wonderful Caturday.

This is Hannah, signing off.

Notes from the Mother of Cats:

The sweater is Alpine Bloom by Caitlin Hunter.
The socks are Pressed Flowers Socks by Amy Cristoffers.
The abandoned MKAL is Sharon on the Trail by Casapinka. I have decided to wait for the finished shawl before I put any more knitting time into it.
The weather has been playing hell with my breathing. A couple of lows tracked right over the state and in the low pressure I don’t do well at all.

Do you see the low? That’s the place where all the wind arrows are swirling together just east of me in the state (I’m located just east of Denver). Fun and games for people with lung/heart conditions!

Behold Hannah and Mateo as kittens… they were pretty cute!