PAH – Yarn, Books & Roses

Hannah and the CoalBear: June Adventures

Hi. I’m Mateo.

I’m trying to swat the phone in the Mother of Cat’s hand in this shot…

The last couple of weeks have really been busy. Wait until I tell you about all of the stuff that is going on around Casa Mother of Cats. Where should I start…

The new brick entryway to the bunny tunnel is working great. Sure, I don’t get to hang right over the opening so I can lunge at the net the second I see the tip of a bunny ear, but the tradeoff is… the little guys aren’t that afraid of me now. They come right up to the edge of the brick entrance and I get quality bunny watching time. I still think that I would have more fun chasing them, but the Mother of Cats is so mean to me…

Then this happened today! This squirrel decided to come right into the catio, so of course I had to charge up the corner post to meet him, right? Who knew that squirrels had a secret ~~death wish~~ desire to play with me? The Mother of Cats made me get down, but then the squirrel ran around on the ROOF looking for a way in while Hannah and I watched. Come on in squirrel, I can show you some fun tricks with my murder mittens…

Finally the squirrel moved on and the Mother of Cats brought us into the house. Why does she interfere with all of my fun? I mean she literally chases all of my potential playmates ~~meals~~ away before I can play with them.

Okay, enough of the adventures with stuff outside. I should mention some of the other things that have been going on around here. The Mother of Cats is knitting like crazy on her latest sweater, and Hannah really helps her with that. Look at all of the progress that she has made!! She also likes the octopus stitch markers! Do I get to chew on them? Again… no.

One of the Mother of Cats’ friends gave her two Cattasaurus donuts for us to play in. WE LOVE THESE THINGS!!!! We both play/sleep in and on these guys for a part of the day. I especially like to drag myself around in circles inside the grey one, and look at Hannah snoozing on hers!

I’m feeling pretty good about life these days. Great wildlife hanging around. New toys to snooze in. Some special hairball support (whatever that is…) cookies to eat. And… of yeah!! Wait until you see the new flag that is flying in the catio!!!!!

That’s me!!! Hannah is lucky that I share my catio with her!!

Well, that’s all for now.

I’m going to bug Hannah for awhile. Laters.

Notes from the Mother of Cats.

Life has been busy lately. The Scleroderma Walk was last weekend, and I really wanted to participate with my team the Rainbow Zebras. The walk was clearly longer than I could manage, so I finally bought a lightweight mobility scooter that I could put in and out of the car by myself. Check this out!

Did you see the emotional support chicken in my basket on the scooter? Here she is!

She was gifted to a friend in a care home after the walk. Chicken, get busy and support!!

This is Scleroderma Awareness Month, and trying to represent, my scleroderma decided to get pushy with the symptoms. What symptoms are these you ask? I’m still dealing with chest discomfort, shortness of breath, dizziness, edema, a partridge in a pear tree, … It is exhausting. In the last 7 days I have been to Urgent Care, the Emergency Room, and two specialist appointments. The moral of the story is… don’t answer the phone from your medical provider if you are too short of breath to talk. They tend to panic. After all of that testing and running around, they found… NOTHING wrong. Of course. Rainbow zebra here. It is something associated with my scleroderma, of course, and all of the normal causes of the symptoms like I am experiencing are not in play. (Can you hear a zebra braying in the background?) Thank heavens my cardiologist will be back in the office next week and maybe something that can actually HELP will be done.

Did I buy more yarn after all of this?

I also bought a new sewing machine and the kit to sew this very cute quilt. Hey… they said I have to stay home on oxygen, so I need to get in essential supplies, right?

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

Almost three years ago there was a blue supermoon in August; it was on the anniversary of my diagnosis, and I wrote about it then. I was feeling pretty good at the time… my concerning autoimmune pneumonia (SSc-ILD) was under control, I had just acquired my portable oxygen and new shoes, and I was full of plans to knit a new sweater. You can read that post here, if you like.

Tonight things are much the same, but also different in important ways. A concerning lung test result a couple of months ago triggered a round of emergency response drugs with follow-up testing. It now appears that my lung disease, always a concern, is stable. Yay! I, however, am not stable. I continue to deal with some concerning symptoms like dizziness, chest pain, shortness of breath, edema, and low blood oxygen levels. Oops. It is starting to look more and more like my pulmonary arterial hypertension (PAH) is active again, and there needs to be a medical response. My rheumatologist told me a couple of weeks ago that I would be returning to the cath lab to check the pressure levels on the right side of my heart. My cardiologist, who has wanted to start me on an additional PAH drug for a few months now, will no longer be put off, I suspect. Fabulous. These drugs always come with not so nice side effects. Of course they do.

And yet, just like three years ago, under a different blue moon, I am happy. Every day is busy, I’m brimming with plans for my beautiful yarn, there is new life around me, and I am… happy. I have an unusual response to bad news: I immediately spring into action to acquire beautiful plants and yarns. You might equate this with spitting in the eye of the monster. Yep. Thursday, when the latest testing made it clear that my heart was the problem, I headed straight to the local nursery and scored lots of beautiful plants. Take that, monster!!

I brought home large lavender plants (not cheap, but look at that plant!!), snapdragons, dianthus, and a bougainvillea to hang from the edge of the catio. I’m hopeful that bunnies will leave all of these plants alone.

I hung yard decorations on the fence. I tied the roses up onto the trellis. I made the baby bunnies a little entryway to their home under the deck.

Hopefully that brick doorway will calm things down in bunny-land as Mateo waits right above the bunny hole and triggers a panic response/chase across the catio every single time a bunny emerges from under the deck. Mateo is not happy with me right now, let me tell you. So far, I haven’t seen a bunny go in or out, but it is just a matter of time, right? I hope at least the bunnies will be happy!

As I planted and cleaned up this week, I was forced to prune some roses. Did I throw the branches away? No, of course not! I have a rose rooting experiment going right now at two different locations.

Hey, these are roses that I like a lot! The hot pink rose is from a large shrub along my driveway… I could use another one at that location! The lighter pink is an English rose called Princess Alexandria of Kent and just look at it!!! I have five different rooting efforts going, and I do hope to get another rose bush out of this!

Not to be outdone by roses, the one of the orchids in the indoor garden has decided to have… babies! These suddenly appeared on one of the blooming stems after the blooms all dropped off.

There it is, a baby orchid with roots, leaves, and even blooms.

These orchid babies have a Hawaiian name: keikis. I now have three of them appearing on one overachieving plant. How cool is that?

I have made a couple of outrageous yarn stops lately too. You know, when you get concerning news, it is best to load up on the pretty stuff, right? That’s my philosophy, and I am completely unapologetic about it. Look at this haul of superwash merino, silk, and yak yarn:

This yarn was on clearance. It would be criminal to not take advantage, right?

All of that new yarn has found a project. A couple of weeks ago a friend asked me to join in on a shawl MKAL. Ka-bam!! The four skeins of bright raspberry colored yarn had a project. Wool & Pine published a fingering weight version of the Alchemist Sweater: three more skeins found a home. The light grey with flashes of color is already warped onto a loom, and some other yarns not shown in the picture are destined to lives as socks, cowls, and wristers. I put aside a couple of hours every day in yarny project creation, and I’d like to believe that it is helping me manage symptoms.

So, there it is. I’m in a bit of trouble, there are new drugs and a mobility scooter on the horizon, I need to wear oxygen again when I’m out, but I am happy. My support network has already closed in around me, and I’m working out ways to handle my new limitations. My little world around me is teeming with life, my garden fills me with joy, and I spend my days immersed in beautiful fiber crafts.

It has been almost 12 years since my first diagnosis. I am in the 5th year following my dual diagnoses of SSc-ILD and PAH, and I continue to find ways to roll with the punches and to shine. I’ve been doing better than expected for a long time, and I keep thinking that maybe resiliency is related to finding glimmers in your everyday life. Every baby bunny sighting, every robin in the yard, every single new rose, all that beautiful yarn… glimmers and joy.

No matter what, choose to be happy.

Shine on, blue moon, shine on.

I’m on my way outside to check on you because…glimmer!!

The Scleroderma Chronicles: There’s been a little set back…

Okay, I have been gone for awhile. I’m sorry that I caused some concern for people. I’ve been contacted by a couple of people, and one (MR, I’m talking to you) has reminded me that I need to continue to check in from time to time…

Here is what is happening in a nutshell. I caught the flu, I got over the flu, I felt kind of good for a week or so, and then I began to get steadily worse. I was losing weight, sleeping around the clock, my hair was falling out, I hurt all over, and my oxygen was low. I had an appointment with my pulmonologist coming up, so I just hung in there. About a month ago I finally saw him and had my routine lung testing done.

Oh dear. The testing didn’t go well. I had a 20% drop in my ability to move CO2 gas from my lungs into my bloodstream. Not good. A drop like that is considered highly significant and set off some red flags. My lungs are in trouble, but there is a strong possibility that my heart is the underlying cause. I’m a patient with both interstitial lung disease (ILD) and pulmonary arterial hypertension (PAH), and the two, like the lungs and the heart themselves, are interconnected. My pulmonologist shot off emails to the other doctors on my team, prescribed three new drugs to treat the immediate problem (lungs!), and ordered up future testing to see if I make some recovery after completing the prescriptions. There were steroids involved, which is risky for scleroderma patients, but I was kind of out of options. Sigh. It took weeks for me to get this sick, and it will take weeks to see if I’m recovering.

These pictures are of my front ash tree. Three weeks ago there was a hard freeze, and the new leaves and buds on my tree all died. Feeling just awful, panting with chest pain, I keep looking sadly at the dead leaves hanging off the tree wondering if it was alive or dead. I began to call it Schrodinger’s Tree: simultaneously alive/dead, and only time would tell. I kind of identified with the tree as I dragged myself out to the catio for my morning latte. Then, as you can see, over the last 10 days the tree has gradually begun to regrow buds, and now it is covered with leaves. I also have slowly improved: no more chest pain, and the panting is much better. The weight loss has stopped, and my sleep is returning to normal.

Last week I went for a specialized CT scan of my chest to see how I’m doing now that I’ve completed the course of emergency response meds, and in another week, I will repeat the lung function tests. I’ve been warned to expect a trip back to the cath lab to measure the pressures inside the right side of my heart, as there is a good chance my PAH has worsened and is at the heart (see what I did there… ha!) of my struggles.

So… I’m kind of in limbo. In cases like these, I find it is best to knit. I pulled out my Weekender Crew sweater that had been languishing in a box under the bed, and slowly managed to knit enough to get it finished. Look at how cute the knitted fabric is!

I have also been buying yarn. Don’t these look like happy colors?

I have lots of plans for this yarn: a shawl, a sweater, a woven scarf, and then a knitted cowl and wristers set for the scleroderma charity auction. With yarn like this it is impossible to feel sorry for myself. I managed to get more (deep rosy pink) yarn wound for a new sweater, and a couple of nights ago, at about the same time that I became positive that the tree was going to survive, I cast on my new Cloudbreak Tee.

It’s going to be great, right?

So, here I am, knitting away, in a state of flux, waiting to see how all of this will turn out. I’m doing everything that my doctors are telling me to do, and I have gotten alarmed about some parts of the emerging treatment plan (there is some discussion about big alterations and new drugs…), but I am clearly improving, and in the meantime, there is… YARN.

Hannah: Be like a cat. Eat the best tuna you can find and then take a long nap.

As I told my pulmonologist… no one ever got better by worrying. Do the best you can, take your meds, and sleep like a cat.

I also told him that I’m not doing another lung biopsy!! He didn’t think I was funny…

PS: I have been looking for all the glimmers. The white pelicans have returned to Colorado. A litter of baby bunnies have emerged from under the deck. I went to the garden center and bought huge lavender plants. My catio is awash with potted flowers and the yard is full of birdsong. My trees are covered with feathery new leaves. The baby eagles at Big Bear Lake are getting huge…

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!!

Thoughts on the Night of the Waning Cresent (Beaver Super) Moon

The bright moon that I watched rise through the trees to the east almost two weeks ago is now just a shining sliver in the western sky, invoking a glimmer of joy before it dips behind the Rocky Mountains. Goodbye, Beaver supermoon. You were really special.

I blogged about the Beaver supermoon here, and in that post I wrote about beavers, my burst of energy and surge of creativity as I worked through a pause and found new projects and books to read. I mentioned at the end about my community work making chemo hats. port pillows, and zipper pouches, and hopefully wrote: “Like the beaver, I hope that my work will ripple out and bring change in my community around me, supporting lots of new life.”

In the two weeks following that post there have been returning ripples and glimmers that were so intense that they were more like flashes of light akin to a lightning strike. Feedback that left me stunned and in tears. There’s a whole backstory here, so it will take a little to explain it all to you. Maybe you should grab a cup of tea and find some cookies. Ready? Here we go.

In 2014, after years of medical gaslighting, I was diagnosed with systemic sclerosis (a form of scleroderma) and Sjogren’s Disease. I was started on some medications, lots of tests were ordered, and just like that, my view of my future changed forever. I learned that there was a 50% fatality rate for my disease. I failed the first two drugs used to try to slow disease progression. Follow-up testing after a year showed that I had declined 27% in my lung function, and I was referred to palliative care. I was in grief. I began to compulsively knit. Overwhelmed, unable to cope with actually creating a garment that would fit, I made shawls. Lots of shawls.

I was moved to new drugs. I started a third immunosuppressive drug, one that was off-label and required a fight with the insurance company, and I began to slowly improve. Palliative care discharged me. I found more beautiful yarns to love, and more shawls to knit. The shawls began to pile up along with the number of diagnosed complicating conditions that were linked to my underlying autoimmune diseases, but I was okay; I had essentially knitted (and blogged) my way through grief, and I was now ready to take things on. I found new doctors who became collaborative partners in my care and faced down the monsters of new complications. Today I am much, much better than expected; my latest lung testing shows that my lungs have regained more function, and my PAH is under control. My cardiologist rarely mentions heart failure when he talks to me, and I am off oxygen.

As I got better, I began to knit sweaters. Lots of sweaters. I began to look for a home for the shawls. Last spring a friend mentioned the needs of patients at a rehab center in Estes Park, Colorado that she worked with. People often arrived there precipitously with little more than the clothes on their backs, and they needed warm clothes. She was thinking hats, mittens, and scarves, but I sent about 10 shawls.

I thought maybe someone would be able to use them.

Saturday, I asked her what had happened to the shawls. The rehab center has the shawls all displayed on quilt hangers that they installed, and patients take them to wrap up in when they go to meetings or whenever they need the comfort of yarny goodness. Instead of going to just a few patients, they are there for all, part of their recovery journey. Evidently, they are popular, and the center could use more. I was stunned, struck by a glimmer so intense that it was a bolt. I started crying. Those shawls, those things that brought me through a really bad time, are now doing the same for others. I had hoped that my work would ripple out a little, but this was so, so much more than I expected.

I have bundled up all of my remaining shawls, keeping only three back for myself, and I plan to send the rest up to the rehab center before the end of the year.

Shine on, Beaver Supermoon, shine on.

Footnotes:

Another glimmer: my son’s three cats were rehomed together to a wonderful lady who had lost a beloved cat. All three kitties are now happy in their new home, piling on and cuddling with her while she crochets in the evenings.

Look! Tachycardia!! I was reading a book when this happened.

My medical adventures continue, but after conferencing with my doctors following the latest round of testing, we have all decided to delay starting a third medication to treat my PAH (that’s pulmonary arterial hypertension if you are new to this blog…). That is kind of huge. I have SSc-ILD (interstitial lung disease associated with systemic sclerosis… do you see why they use acronyms?…), but I am not putting down scar tissue (fibrosis), and that is even more huge: it is rare to have one without the other. Do you see the glimmer? My prognosis for this condition, the leading cause of death for patients with systemic sclerosis, is stabilizing into the “she’s doing really well” column, and that is why we can afford to delay this drug.

My wrists and knee (the one that was injured in a fall this summer) concerned my rheumatologist, and she has ordered specialized testing, but all things considered, I am doing really well.

Glimmers and ripples.

The best two weeks ever.

Did you enjoy your tea and cookies?

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.

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.

The Scleroderma Chronicles: Bioethical Dilemmas and Unintended Consequences

I was a biology teacher in the time of the Human Genome Project. This week, with the coming release of the newest movie about Oppenheimer and the development of the atomic bomb, I’ve been thinking about the DNA and genes again (I know, it is a biogeek thing…), because one of the candidates running for the Republican nomination in the US wants to cut the Department of Energy if elected.

Kind of a loose chain of threads, you’re probably thinking. Am I right? Well… the Department of Energy is the agency that is responsible for the regulation of the nuclear energy industry in the US. There’s a lot of waste coming out of those nuclear reactors, and there was some concern about how much mutational damage was being done to DNA through exposure to radiation. Well, to figure that out, you need to know what undamaged DNA looks like. The initial drive to figure out what the human genome looks like came from that agency and once the results came in early this century the world completely changed. Like a big change. Like an atomic bomb level change. Like, there are now sites that have huge depositories of biotechnical data and tools to aid in research.

In the classroom we biology teachers began to teach about the Human Genome Project and also did a week-long unit around the ethical problems associated with this new knowledge (bioethics, if you will). The kids grappled with dilemmas like… if you had the gene for a fatal, untreatable illness, would you want to know? If you were a child at risk for this gene, would it be okay for your parents to have you tested for it before you are 18? If your unborn child tested positive for this condition, what would you do? Would it be okay for human organs to be grown for transplantation? Who should get the transplant… a single father of 4, or a 16-year-old student in your high school? Should your employer allow you to continue in your airline pilot job if a genetic test shows you are high risk for a sudden cardiac event. Should genetic test results be private? Whew. Lots to grapple with in this unit.

Makes your head hurt, doesn’t it. Check out my knitting progress this week!

So, shit kind of got real this week. One of the members of an online support group for pulmonary arterial hypertension (a progressive and fatal heart/lung condition that I have thanks to systemic sclerosis) has just been identified with a gene (bpmr2) that causes the condition; her PAH is caused by this gene and can be inherited; she has a different type from me, but it is still PAH. Oh, boy. This is not good at all. The life expectancy right now is up to about 7 years, but you only need one copy of the gene to be at risk for PAH… there is a 50% chance for each of her children that they inherited the gene. Only 20% of people with the gene will develop PAH, but that is still a big risk.

Should she tell her two children? she is asking in the forum. They are in their late 20s. If she does, and they get tested, should they have their own children if they have the gene? Her heart is broken, literally.

Life expectancy has greatly improved over the last few years with new medications being generated in the modern climate of expanding cellular and molecular biological information. Untreated PAH (and PH kind of gets lumped together with it according to my pulmonologist…) has a life expectancy of about 2.8 years… not good.

Rose break! By the end of the discussion thread, she was leaning towards telling the kids.

Which brings me to the next shitty bioethical item that occurred this week. One of the members of another support group caught Covid and had to go off her drugs while fighting the virus. She has been slow to recover, and still feels pretty bad, but she took a pregnancy test and restarted her medications again a few weeks ago, only to discover this week that she is actually 12 weeks pregnant. Why did she have to take a pregnancy test before restarting her drugs? Because some of the drugs used to treat PAH can cause extreme damage to a human fetus. The enrollment process is very strict, and every effort is made to keep patients from this situation.

I am in grief for this woman. The doctors think that the baby has been spared the worst of the drug toxicity, but now she is working her way through whether to abort or not, to restart her drugs, or not. To risk death to save the baby, or to abort and restart treatment. If the baby is born in good health, will she live long enough to see it enter kindergarten. If the baby is born with health problems, her medical burden is increased. She is young. This is a horrible mess, and she is already too far along to get an abortion in many states in the US. I don’t know if she has other children, or what her support structure is…

This week I heard that some states are demanding private health records to identify any out-of-state abortions or transgender care that has happened in another state. I hope that this woman lives in another country…

Then I heard that a popular hamburger joint near my home is now going to fire employees who wear a mask. Say, WHAT?! Let me tell you, any person who has a serious lung/heart condition like mine wants to wear a mask, and they are so grateful if the person at the service window is also wearing a mask. Sometimes people offer to put on a mask when they see that I am wearing one. Now that person can be fired for putting on a mask… remember the young PAH patient whose nightmare began with catching Covid? Truthfully, any random virus can cause serious damage to patients with PAH, especially if they are also immunosuppressed.

So, there are a lot of bioethical dilemmas here, and the unintended consequences of people who want to make sweeping decisions without understanding all the interlocking systems involved and the potential ramifications are staggering. NO, you can’t just disband the Department of Energy, and sweeping, inflexible decisions about reproductive issues (that seem to be smugly self-righteous to me) can be disastrous. It is easy to order up genetic tests, but what happens once you have the information can be life-altering.

And don’t get me started on this animosity towards mask wearing…

I can’t help but think that no one should attempt to enact legislation without ~~suffering through~~ experiencing something like the bioethics unit that was taught at the high school where I used to work. I keep wondering, do these legislators actually understand nuclear power and weapons? Have they heard of the Human Genome Project? About gene testing? About rare diseases? They absolutely need to go see the Oppenheimer movie, maybe, and then write me a report about the Human Genome Project. I’m pretty sure that they would struggle with epigenetics, but it would do them good if they looked into it. They can get extra credit for a summary of pulmonary arterial hypertension. I would like to give them a book list of summer reading to get through on their breaks, because only the well-informed and educated should attempt to make decisions about these issues in the seven levels of bioethical hell that is the life of patients like me.

Because this week was a really hard one; for too many people this shit is real.

PS: Have you seen the show House? I kind of think that he could use a little bioethics sensitivity training, too.

The Scleroderma Chronicles: Rare Disease Day, 2023

Well, here it is again. Rare Disease Day. I kind of was going to ignore it this year because I’m quite frankly worn out by my… wait for it… rare diseases, but I also feel like I should pull myself together and represent for the community again.

People with rare diseases are referred to as Zebras in the medical community. I obtained my zebra status when I was diagnosed with systemic sclerosis in 2014. This zebra was sent to me last week by my *Most Knitworthy Niece* Melissa.

I wrote a pretty darn good post last year about my journey with a rare disease which you can read here if you want. I talked about rare diseases in general, my specific conditions, and the many things that have been said to me by my doctors over the years. I thought about just reposting what I wrote last year, but I’ve been reflecting all morning on some recent events that kind of shine a light on my situation and that of other people who are coping with rare conditions.

I recently managed to go knit with my fellow members of Frayed Knots. This was a big social outing for me because it’s hard to get out of the house, and I have to be having a really good day to go to something like this. Knitting with friends is just “normal” for most people, and it would just be a little part of their day, but for me this was something that I had to prepare for a couple of days in advance, and then recover from in bed the next day. Many rare conditions are chronic, and chronic illnesses can be very isolating by their very nature.
A woman at the knitting group questioned my decision to wear a mask. I started to explain, but she cut me off to say that I was doing it so I could feel comfortable. It was a little condescending and suggested that I was being paranoid. Truthfully, my immune system, crushed by the drugs that I am taking right now, is compromised in its ability to make antibodies. If I catch a viral disease like the flu or Covid, there is a good chance that I won’t survive. My vaccinations have a low chance of protecting me for the same reason. For people with rare diseases, life is fraught and full of difficult decisions. For me, and for many other immunocompromised individuals, simple decisions involve life/death level risk analysis.
Another woman at the knitting table was struggling with long Covid and shared her difficulties with returning to work. She especially felt crushed by the attitudes of her coworkers who seemed to feel that she was “fine” and just trying to get attention. Yep. Been there, done that. Many rare diseases are genetic or largely invisible to others. Invisible illnesses are especially hard to cope with because others tend to question their validity.
I’m in several online support groups, and there are always discussions about what drugs to take, and whether the side effects are worth the risks. Yep. There are no specific drugs for systemic sclerosis, no cure, and treatment can involve a patchwork of risky off-label drugs. The drugs that are used are often non-specific carpet-bombing like approaches. Rare diseases have fewer treatment options because there are only a limited number of patients.

Over the last year my wonderful team of physicians have been suggesting that I am really unusual and have been extremely responsive to my emails. They clear an hour for appointments with me. I’m one of the very lucky zebras who has managed to get diagnoses, secured treatment, and am benefiting from a team of collaborative, interdisciplinary physicians who actively communicate with each other and with me; just last week my rheumatologist told me that for a patient with my status this is the only way to deliver care. I’m so grateful to have secured this level of medical attention, but I also feel a little nervous about it. I spent some time this morning trying to work out the probability of one person having the several medical diagnoses that I’ve racked up since 2014. Like, just how rare am I?

The National Organization for Rare Disorders estimates that there are 100,000 patients with systemic sclerosis in the United States. That’s rare, but still, a big club, right?

The 15% Rule is a general measurement of the risk of severe organ involvement in systemic sclerosis. As it turns out, quite a few of the major lung, heart, and kidney complications associated with systemic sclerosis happen about 15% of the time. I have Sjogren’s Disease overlap with my systemic sclerosis, which happens in about 13% of patients. Suddenly, I’m in a much smaller group of about 13,000 patients.

My most worrisome complicating conditions are diastolic dysfunction (a type of heart failure), pulmonary arterial hypertension (PAH) and interstitial lung disease (SSc-ILD). I looked up the risk of having each of these conditions using the 15% rule data, and it turns out the risks are 16% (diastolic dysfunction), 15% (PAH) and 35% for the SSc-ILD. Did you notice the the ILD doesn’t fit the 15% rule? Yep. It’s much more common and is the leading cause of death in systemic sclerosis patients. I found that risk factor here.

I brushed up on my probability math (you multiply the probabilities of independent events…), and after running the numbers:

100,000(13/100 x 16/100 x 15/100 x 35/100)

I came to a grand total of 116 other patients in the US who share my set of diagnosed conditions.

Oh.

See, I have lots and lots of stripes. Stripes in purple, teal, periwinkle, red, green, and blue: these are the awareness colors for my conditions.

I just ordered that rainbow zebra unicorn shirt! I plan to wear it with my mask on my next social outing…

You can learn more about Rare Disease Day or my conditions at the links below.

Goodbye 2021: Year’s End

This is the last update for the year 2021. You know, 2020 was a pretty bad year for both me and the world, but 2021 just plain outdid itself. THIS HAS BEEN A HORRIBLE YEAR!!!! Seriously, I have been reflecting on all the horribleness of the year, and it is multilayered in the just plain awfulness of it. Here is some of the angst, anger, and sadness in a nutshell.

If you aren’t wearing a mask these days, shame on you!! I have been in lockdown for two stinking years (!) and I am over all your anti-public health nonsense.

If you are one of the doctors who told me that there wasn’t anything that you could do for me (and to not come back), or that I had sleep apnea, or that I needed to exercise more, or that my tests showed that I was fine and you would just continue to monitor my symptoms… shame on you!!! I finally received credible diagnoses this fall (from new doctors) that explained my symptoms. You know, the ones that you ignored or dismissed all those times I came to get help… It is good to get diagnosed, but in this case it is also a mixed blessing as my condition cannot be reversed and management is going to be difficult. Shame. On. You!!!

If you are one of the people who believe that the election in the US was stolen and that the answer is to impede the ability of American citizens to vote, or to create a provision that allows the legislatures of some states to just overturn the results of elections, or to resort to violence… shame on you!!!!

Did you notice that the number of exclamation marks kept growing? That’s how much shame is attached to those targets. There, I got that off my chest and let’s hope that things go a little better in the coming year.

True to its rotten black heart 2021 went out in absolutely dreadful and ironic fashion. First the dreadful.

We are in an extreme drought where I live and everything is brown. The grass, the fields, the bushes and even some of the evergreen trees are now brown.

Last Thursday, December 30th, we had a high wind event in my state of Colorado as a major weather front pushed its way towards us over the Rocky Mountains. In the area around Boulder, Colorado the gusts were extreme (one was clocked at 115 mph) and the sustained winds through the day were around 75 mph. Several fires started and swept through dried fields and brush towards housing developments and towns with horrifying speed. There was nothing that could be done as subdivisions, stores, and hospitals were evacuated; the fire crews set up base in the parking lot of a mall where they could best defend themselves while waiting for a break in the wind. No joy there throughout the afternoon and early evening. There were heartbreaking scenes of burning homes by others covered in Christmas lights. People parked along the major freeway hoping to see if their home was still standing. The historic downtown area of a town I have frequented in the past was lost.

At around 3pm I realized that the worst fire was near my son’s home in northern Westminster. As the evacuation zone continued to grow to within a mile of him we started to make plans to get him and his pets out safely. It was a nightmare as firetruck after firetruck rushed north towards the fire line in the night past his windows. By midnight the winds had died down, the fire stopped its spread to the south, and my son was safe. Daylight the next day showed that the damage was just horrific. Almost 1,000 homes have been lost, thousands are displaced, and the hunt for the missing is ongoing. There is information about all of this here.

Then the storm arrived on New Year’s Eve.

In a cruel twist of irony, after failing to deliver any real snow all fall and early winter, the winter storm arrived New Year’s Eve with snow, icy roads, and bitter cold. Like, we started the day at 3 degrees Fahrenheit yesterday. Serious, serious cold after weeks of warm sunny weather. All those poor people who escaped with only the clothes on their backs in the wind/fire event now have to deal with this. Bad 2021, bad!!

And that, thankfully, was the end of the year.

I also finished my Kevat sweater in the final days of the year.

It is wet and blocking in this photo, but not finished. See the loose ends of yarn?

I did finish the sweater with the ribbing and I-cord to make nice open and clean edges. I decided to block and try on the sweater again before knitting on a little lace edging onto the bottom; if the length is exactly right there won’t be any lace added. I did do a little math, however, and I do have exactly the right number of stitches to do the lace. It’s a sign, right?

Hannah and Mateo (AKA the Coalbear) and I all wish you all a Happy New Year. May things take a turn for the better with the coming weeks and months.

And 2022, you had better behave yourself or I’ll be sending you out on a walk of shame, too. I do have to warn you, however, that I am a little concerned with how you are starting out…

Because this year we are going to learn how to cope with a million new Covid cases a day in the US, and I am going to deal with this whole broken heart thing that I have going on, and we are going to f*cking save democracy. Shape up quick 2022, because this is the tough time, and you had better show some backbone, because I expect you to fight like you really mean it for the things that are really important.