Do you see all this yarny goodness that I’m cuddled up with?
The Mother of Cats has taken down the sweater that was in time out (I wish that Mateo was in time out… he has been annoying all day!!) and started knitting on it again. She was a little worried about coming back to a project after so many months, but it turned out to be kind of easy for her because she had made so many notes on the pattern and even made a big knitting aid to help her keep track of the yarn colors, the pattern, and the decreases on the sleeves.
All the numbers refer to the chart rows for the pattern. The dark boxes are the decrease rows, and the numbers to left side are the yarn colors. Whew! It’s enough to give me a headache!! Maybe some tuna will help…
Anyway, she spent the week knitting away on the first sleeve and got it finished in the middle of the week. Here’s what it looks like:
Pretty cool sleeve, right? The pattern goes down the outside of the sleeve, and the Mother of Cats is soooo happy that she doesn’t have to knit too many bobbles.
She’s now working on the second sleeve and really worried about running out of one of the yarn colors. She keeps weighing the ball of yarn and saying things that I think are inappropriate for kitty ears under her breath. Poor Mother of Cats. I never stress. Well, I only stress a little. Okay, I am in the closet for hours every time a stranger comes to the door, but that is just good sense, right?
The worries about the yarn are pretty bad, so I’ve been hanging out with the Mother of Cats while she knits on the second sleeve.
Anyways, the sweater is coming along well, and I think that it is one of the comfiest knits that she has made in a while. I just love taking naps on it!! Isn’t the color nice? It really makes my coat shine.
This is Hannah, signing off.
>^..^<
Notes from the Mother of Cats: That sweater is La Prairie by Joji Locatelli. I’m now in a rush to get it done before the first snow of the season. Next week is going to stay warm, so maybe I’ll pull this off!
After a phone call and then a few email exchanges with my cardiologist it was decided that I needed to wear a heart monitor for the next 30 days to rule out atrial fibrillation (AFib); evidently that is a systemic sclerosis thing, and I’m high risk to develop it because of other things going on with my heart. I did not see this coming, but it absolutely matches my symptoms.
Look at this heart monitor!!
That heart monitor is just fabulous!! The whole thing is taped on, I can wear it in the shower, and there are no leads to worry about coming loose. The monitor is blue toothed to a phone that I need to carry at all times, and it is transmitting to both the company that owns the monitor and my doctor. If I have another event while wearing it, I can send a message immediately to my doctor on the phone. Isn’t this technology fabulous? Of course, nothing has happened while I’ve been wearing the monitor, but I still have 28 days to go…
Mateo: I am not annoying!!! Hannah should be the one in time out because… hold on… I’ll think of something… she hogs all the tuna!
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.
Cute fingerless mitts, right?
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.
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)
Hannah: Where are my bunnies?
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…
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.
Shine like a sunflower, everyone!
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.
I am still thinking about resiliency. I went for a drug infusion a couple of weeks ago, and the lady in the chair next to me and I talked about what resiliency means. She is a liver transplant recipient, and she is also taking the immunosuppressant that I take to control my systemic sclerosis. Like a lot of patients in my scleroderma community, she has had to roll with a series of escalating complications tied to her original liver disease. We both now have osteoporosis, walk with canes, struggle with anemia, and are on a lot of drugs. We laughed about the canes and drug side effects: we’re still here, we crowed. Unlike me, she never checks for drug side effects or interactions; if she knew about them, she figured that she would just worry and imagine she was developing them. Instead, she just cruises along and if something comes up, she contacts her doctors.
Resilience.
Welcome to Scleroderma Awareness Month. I’m spending the month organizing my thought about resilience into some type of logical order. I have a Word document going with an organizational table, a ton of links, and everything scleroderma in it. It will be good for me, I think.
This is a pygmy sunflower. How cute it that!
By the way, my new friend also wants an emotional support chicken.
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.
Hannah on the Catio.
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.
The United States Food & Drug Administration has really been on my mind this last week. Let me set the background: I have a rare, progressive autoimmune disease that at this date has NOT ONE SINGLE DRUG that can directly treat it. Not one. There are drugs that target symptoms and the complications of my disease, systemic sclerosis, but none that can shut the disease down.
Over the last few days two alerts about new treatment developments for systemic sclerosis hit my newsfeed. One of the drugs, Certa Therapeutics’ FT011, is designed to treat chronic fibrosis and was just granted FDA Fast Track status. After a 12-week trial 60% of the systemic sclerosis patients had clinically significant improvement: I suspect that they are talking about lung function here. This is huge! This is the drug that I have been waiting for ever since I quit the anti-fibrotic drug OFEV last summer due to intolerable side effects. Fast track status means I may get this drug in another year or so. THIS IS HUGE, PEOPLE!!!! HUGE!!!
How about a break? Here is my monster orchid 4 years ago today.
Just a couple days after the news about FT011 another news alert, even bigger news, came that Cabaletta Bio’s CABA-201 drug had been granted Orphan Drug status by the FDA. I’m not completely sure, but this seems to be a type of CAR T-cell therapy that would provide an immune system reset: a cure. Did you catch that? A CURE!!!!! The disease that I live with, systemic sclerosis, could be stopped dead in its track if this works. Orphan Drug status provides some financial incentives and helps in bringing the drug to market, but it doesn’t speed up the process like the Fast Track status will for FT011. Still, this is good news arriving all at once. I have a sense that momentum is building as these new, very sophisticated drug treatment strategies come to market based on specific molecular interventions in the patient.
Anyway, none of this going to happen overnight because the FDA approval process is very slow and painstaking. This is the way it needs to be to develop drugs safely. Drugs are first visualized based on knowledge of the regulation and complexities of biological systems. “Oh, that’s a good idea for a drug,” some scientist tells themself, thinking about a regulatory pathway in humans. They follow through on their idea and then see if it works in a specific science-based process that tests the drug in lab, animals and then finally humans to see if it will treat the disease/condition.
Mateo: Hang on, everyone. The Mother of Cats is going to go all science geek now…
For example, one of my drugs is called Letairis. It is designed to treat pulmonary arterial hypertension, and it is an endothelin receptor antagonist.What the heck is that, you ask? As you might, because who in their everyday life would need to know about this stuff, right? Maybe you should skip this part if you are feeling sleepy… You’re still reading? Wow! I’m so impressed and grateful for your trust…Well, anyway, here is the very short version at the Midnight Knitter level of understanding: endothelin is a small protein produced by the cells lining the inside of my blood vessels that causes blood vessels to constrict. The drug that I take, Letairis, is a sneaky molecule that mimics endothelin; it binds to the receptor on the target site and blocks endothelin, keeping it from attaching to the receptor. The drug prevents my blood vessels from constricting and keeps my blood pressure in my lungs low. Yay!
Anyway, some scientist long ago had an idea that maybe blocking the action of endothelin would be a good way to control pulmonary hypertension. This idea was tested in the lab, then on animals, and then if all seemed okay it was tested on a very small group of humans, and then larger groups of humans. Data is collected and analyzed to look for the efficacy of the drug while also identifying all the possible side effects. There is a lot of risk/benefit analysis before the drug is released to market. After that more data is collected to hunt for bad side effects once the drug is being used in this much larger market.
I guess my point is, this is a long, long process with lots of safeguards along the way. The FDA is the agency that provides the scientific guard rails that protect me and every other drug consumer in the US from bad information, harmful drugs, and unscrupulous people who push pseudoscience treatments in order to make a buck. Thank you, FDA, for providing this essential service for me and every other American whether they appreciate it or not. I’m glad that you do this, even if it means I have to wait for my new drug that is slowly working its way through the process to come help me.
Mateo: Now the Mother of Cats is getting political. Watch out everyone!!
Today the United States Supreme Court heard arguments about the abortion drug mifepristone that centered around its approval by the FDA and the decision by that agency to allow it to be delivered by mail. I’m convinced that the issue has been raised solely because this drug is used for abortions, but the arguments brought before the court are suddenly extremely pertinent to me and my own situation.
I’m pretty sure that not one of the justices on the supreme court is qualified to make a judgement about the scientific process used to develop this drug and the analysis that was made about its safety. Just as I wouldn’t allow one of the large pharmaceutical companies to rule on a matter of law, I am alarmed that the courts are now going to second-guess a science-based agency.
I am also extremely concerned about the court deciding whether drugs can be sent to patients through the mail. It has to do with the ancient, mostly forgotten until now, laws on the books about drugs that can be used for abortions or contraception being delivered by mail.
Remember my drug Letairis? I need it to control my life-threatening pulmonary arterial hypertension that was gifted to me by my systemic sclerosis. This drug has a rigorous enrollment process and requires female patients to use two forms of birth control and to take a pregnancy test every month before they can get the next 30-day supply. Each month this drug is delivered to me by overnight express from a pharmacy in another state. This drug can harm an unborn child and may create the need for an abortion. Suddenly the arguments that were made today before the US Supreme Court threaten me and my access to medical care.
I sure hope that Certa’s FT011’s progress on the Fast Track isn’t affected by all of this. An upended FDA approval process could be disastrous for me and a lot of other people waiting for a new drug to arrive to save their butt.
Unintended consequences are a bitch.
Update 3/27/2024: While I was writing this post yesterday, the FDA approved a new drug for pulmonary arterial hypertension (WHO Group 1). The relief and celebration in the online support communities this morning was pretty amazing. This is good news for me, too, as my PAH is in Group 1. Yay science!!
Hannah is taking the week off, but she would like to remind everyone that they should have a good Caturday. Go outside and listen to the birds! Roll around and coat your fur with some nice dust to take the oil off. Look for a bunny. Demand tuna!! Run wild through the house, chase your brother, and sleep in a sunbeam.
What? I’m busy out here on the catio…
I’m still struggling with fatigue, and even though I’ve been trying to eat iron-rich foods, my doctor has decided that I need supplementation. Ugh. I’ve discovered that iron supplements are pretty much evil. Seriously evil! Like, the awful goes on for at least three days after each supplement, but I am starting to feel better. I sleep better. I have more energy. My GI symptoms are starting to calm down. I’m more mentally alert and have an urge to write. Huh. Anemia. There is another post in here somewhere, but not today. Today is about my happy place, the crafting room.
For some reason that I don’t understand, Hannah has decided that I need to spend all my waking hours in the crafting room. She trills and carries on (like, she scratches the woodwork around the doors to make me come running…) until I come back to the room. She is okay if I’m up and moving about, but if I try to read in bed, she intervenes and makes me get up. Okay. Transferring my reading to the craft room… huh… there is lots of sunlight in this room. I have a little loveseat along with the indoor garden, my loom, and a television, so this is actually a good place to hang out while I’m iron-loading. Did I mention that there is a walk-in closet attached to this room with all things crafting inside? Maybe Hannah knows what she’s doing. Over the last week I’ve been gardening and moving things around, and I realized that I really have made a happy place for myself in this room.
Here’s my loveseat with my emotional support chicken, my knitting, and one of my favorite shawls.
Did you want the links for those knitted objects? Just in case you do, here they are. The sweater is La Prairie by Joji Locatelli. The shawl is another Joji creation called Julie’s Wrap, and here is the link for the Emotional Support Chicken.
Do you see all the popcorns on the edging of Julie’s Wrap? It took FOREVER to make all of those, and you would think that I’d learned my lesson, but noooo…. I went ahead and made those popcorn stitches on the La Prairie. Do I regret this choice each time I come to that row on the chart with the popcorns? Why yes, yes I do. And yet…
Look at how cute they are in this cardigan!!!!
If you commit to knitting this sweater, and it is a serious commitment, you might as well commit to the popcorn. I’m really pleased with how this is looking. I’m into the third color of yarn and can’t wait to get to the fourth one. This is going to be a fun light cardigan later on this year.
Back to the happy things. They have pretty much piled up on the table in the room that usually has my fabric cutting station on it. This is what has moved onto it over the last week or two.
That teddy bear is the one that my son gave me in the ICU after my lung biopsy. He’s wearing a hat that I’ve knit for Frayed Knots donation, and the little zebras are ones that my niece sent to me as happy surprises. The Amazon Echo on the table reads my audible books to me while I knit. Happy. This is happy stuff.Did you notice the green cat tail in the last photo? Here is the knitted cat, in fun spring colors. He’s propping up my current dragon/octopus books and doing a great job at it, too. Those books make me happy! The watercolor painting in the background is one I bought with a girlfriend at an art sale one perfect fall day in Golden, Colorado. My friend died two years ago, but the memory of her and that perfect day lives on in the painting.Some of the plants from the indoor garden have overflowed onto this table. (Actually, that’s what set off the rearrangement of happy stuff.) This white orchid is a rebloom on a plant from last year (yay!), and in front of it is one of the new little fig trees. To the right, in a little terrarium that MAKES ME HAPPY is an African violet that is blooming its heart out. Above them you can see a bit of the quilt that my cousin made and sold to me a few years ago. Hey, doesn’t this make you happy too?
If you are interested in knitting your own cat, the pattern is Grey Kitten, Calico Cat by Claire Garland. I think that some more things will be joining this assembly on the table. I have some little statues that were put away because… Hannah… that I can now take out and arrange with the flowers. I have some special skeins of yarn that might be fun to display. Maybe I should focus on weaving a little wall hanging on the loom.
Tomorrow it will snow again, but I will be safely indoors with Hannah in the craft room, embracing the popcorn stitch, and enjoying all the little happy things that have been collected in here that are emblematic of friends, family, favorite knits, and happy memories.
There is a little take-home lesson here somewhere. If you are struggling with extreme fatigue, shortness of breath, and everything hurts, just go with it. Make yourself a happy place. Make something beautiful. Hang out with your cat. Embrace the popcorn stitch. Read in the sunshine.
Don’t forget to take your iron supplement, though, no matter how nasty it is!
Hannah wants me to mention that the Chewy tuna fairy visited us yesterday.
p.s. MR, how could I have forgotten to post the picture of the whole quilt? Here it is, a ribbon winner by my wonderful cousin Ruth Ann. Ya’ll, MR is at Downunder with Boodz and sets me straight whenever I wander from the straight and narrow…
This is just a fast check in to let you know what has been going on the last couple of weeks. First of all, I want to mention that the Mother of Cats has been going away in the car WAY TOO MUCH lately. I mean, she should always be here to play with me and WHAT IF I HAVE A TUNA EMERGENCY??? Seriously, she needs to take her responsibilities and duties a little more seriously.
Mateo would like me to mention that it has been snowing almost every single weekend this year. He no longer things that it is amusing. The Mother of Cats should do something about this, too.
The Mother of Cats has also been reading in bed (but I try to put a stop to that whenever I can) and knitting her little hats. This weekend she drove to her knitting group to turn in the hats that she has knitted this year to date: there are 16 of them!
The Mother of Cats also got six PICC line covers knitted; she donated them along with the hats on Saturday. She filled a big bin with shawls and socks and cowls that she doesn’t wear anymore and took that with her too; they were all donated to a refugee assistance organization. She’s happy to put the knitted stuff to good use, and I’m so happy to have an empty shelf in the closet to hide from Mateo on. The Mother of Cats even put a cat bed on the shelf for me to use. As long as Mateo doesn’t find my secret hiding spot, I’m going to have long naps without any annoying interference from that CoalBear!
We got cute little African violets for Valentine’s day along with a little pink zebra. Mateo thinks that the zebra is for him and he bunny kicks it, but I know that the zebra is really mine!!
Well, I think that’s all I have to share for now. I do want to mention that it is sunny most mornings of the week and I’m really enjoying sunshine again. It makes me shed! I just love getting combed with the grooming brush. Mateo, not so much!
I look a little like the cat quilt on the wall behind me…
This is Hannah, signing off.
>^..^<
Notes from the Mother of Cats:
The pattern for the hats is Barley DK by Tin Can Knits.
I knit for Frayed Knots, a Denver-area community knitting group. These wonderful ladies also provide services to the homeless/refugee communities in our area along with the many items produced for local hospitals and cancer centers.
I’m making the rounds to doctors again and getting testing done. I’m still really struggling with fatigue, pain, and shortness of breath; my lips are bluer than ever. Initial testing results show that I’ve developed anemia. It is an unusual type; I have enough red blood cells, but they are too small and don’t have enough hemoglobin. Next up… more testing!
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.
Yarn, Books & Roses 