Scleroderma – Yarn, Books & Roses

The Scleroderma Chronicles: Adventures with Dysautonomia

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

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

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

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

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

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

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

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

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

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

I walked into the yarn store.

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

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

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

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

More little glimmers:

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

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

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 BioGeek Summer Reading List: Polio

Hannah hanging out with the summer books.

It’s been a kind of slow summer because… tendonitis… but I am getting a lot of reading done. I had moved some books into the craft room with the intention of reading them *someday soon*, and then just like that, this became the summer of nonfiction, disease book reading. Hey, I’m a BioGeek, and these books are actually pretty interesting. I had some idea of organizing the books into an order that made sense, but the topics kept overlapping so much I am just going to dive in and start talking about what I’ve been reading about and how it connects to me. Should I talk about the books from my days in the classroom? The book that made me start hoarding essentials in case of a pandemic? The book that made me aware of ebola? Hmmm… Let’s start out with the one that has a lot of personal connections to me and my family…

It’s August 14th, 1945. My mom had just arrived in New York City from Argentina, returning to the United States to visit her sister, a member of the Women’s Army Corps in Washington, D.C. I’m guessing that NYC was in an uproar that day, as it was the exact date of the end of World War Two here in the US, being Victory over Japan Day. For my mother, however, it was also the start of her involvement in another type of war.

Halfway across the nation, an epidemic of polio had broken out in the state of Illinois. There was a national call for nurses, and the American Red Cross contacted my mom, asking her if she could go. Here is the chart showing the dates of newly diagnosed cases in city of Rockford and Winnebago County, Illinois that year.

It was a big outbreak, and mom was one of many, many nurses and other health professionals who answered the call. Just like that, polio became part of the story of my family. My mother met my father when she was sent by the Red Cross to another potential polio outbreak in Albuquerque, New Mexico; he was a patient recovering from his service in North Africa when she met him there. The polio outbreak didn’t amount to much, but the romance did. 🙂 One of my first memories was getting a polio vaccine. I remember collecting dimes in a cardboard folder as a participant in the March of Dimes. I once was smuggled into the hospital by my mom, clutching an ornry yellow cat named Henry, to show him off to a woman in an iron lung; she had been in that iron lung for years and my mom had been sharing tales of Henry’s misadventures with her. Some of my classmates had had polio, and I knew people who wore leg braces. Much of my childhood was colored by polio. In my mind, polio was a terrifying, ever present disease that had gripped the USA.

I read Polio: An American Story a few weeks ago, thinking that it would enrich my understandings of the polio time that I had lived through. Boy, did it ever! There was so much that I didn’t understand about polio. It was an illness that emerged as outbreaks in communities with modern plumbing and higher levels of sanitation. The common understanding came to be that polio was a virus that was common in poor sanitary conditions, and most people exposed early developed immunity without significant illness. I did not see that coming! It was also not the most dangerous or significant disease in the US at that time, but it was one that felt terrifying. The president, Franklin D. Roosevelt, was a polio survivor. The fundraising campaign to find a cure for polio, a vaccine to prevent illness, was boosted by this president and the national spotlight that he brought to these efforts. A private organization, the National Foundation for Infantile Paralysis, provided for the care and rehab of polios and funded the development of the polio vaccines. The organization later became known as the March of Dimes: the very entity that I once collected dimes for. The vaccine trials used children, 2 million of them, as guinea pigs (!), and there was significant conflict between the two major researchers who used different approaches: Jonas Salk and Albert Sabin, and the battle became political. As vaccine production ramped up, lessons were learned about product control. In many ways, the national drive that existed during WWII was continued in the drive to conquer polio. The first vaccine, developed by Salk, was announced in March of 1953 to national celebration.

This book was really engaging, and I leaned so much. Imagine a private organization that takes over to provide for your care when you are diagnosed with a disabling disease! Who knew that the battle of the vaccines was so intense, and the process to verify efficacy so convoluted. Some of this applies to our situation today as people here in the US are questioning the efficacy of vaccines and the validity of the development process. Some of that is grounded in the long, checked history of polio vaccines. That first vaccine I remember was the Salk vaccine developed from inactivated viruses. Years later a live virus version of the vaccine, the Sabin vaccine, became more widely used, but today the Salk vaccine is once again used. Here in the USA, it is easy to think that polio is a disease of the past, but it lives on in other areas in the world.

So, what was next on my BioGeek reading list? Tuberculosis!!! Stay tuned…

Notes:

It was hugely ironic that my mom arrived back in the US on the very day the war with Japan ended. Years before, while her parents were attempting to enroll her in nursing school, her sister, waiting in the car, heard the first report of the bombing of Pearl Harbor on the radio; America’s entry into WWII was immediately afterwards.
The fundraising and research drives of many organizations connected to disease prevention, treatments, and cures are modeled on the success of the polio campaign. I hear the echos over the decades now with every email from the National Scleroderma Foundation.
Oh, how is my scleroderma doing these days? Tendonitis continues, but my latest visit with my cardiologist went well: my pulmonary arterial hypertension is stable, and my heart is doing okay. The EKG isn’t completely normal, but I’ll take it, right?!! He wants to add another drug or two, but we are delaying for now as I’m already taking a LOT of medications.
Last week was the anniversary of day my doctor ordered the blood tests that led to my diagnosis of Sjogren’s Disease and Limited Systemic Sclerosis.

That was 22 tests in 14 vials of blood. Today I take 22 pills a day. Kind of ironic, right? Do I consider yarn to be part of my essential treatment? Why yes, yes I do!

The Scleroderma Chronicles: This is World Scleroderma Day!

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

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

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

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

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

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

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

Sunflowers are the international symbol for scleroderma.

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

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

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

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

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

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

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

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

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

Then June arrived.

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

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

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

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

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

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

Zebra running wild!!

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

Hi. I’m Hannah,

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

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

THE CATIO WAS GONE!!!!!!

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

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

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

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

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

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

This is Hannah, signing off.

Notes from the Mother of Cats:

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

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

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

So… I can cast on Sea Glass, right?

<Hannah: send tuna!!>

The Scleroderma Chronicles: The Surreal Stumpy Adventure

It’s been kind of a tough month. I had a bad flare and couldn’t knit, I suffered through an annoying 30-day heart monitor test, and then there was Thanksgiving. I’ve been slowing clawing my way back from the flare over several weeks, and finally last week I started to feel pretty much like myself again. I even made several hats on my Sentro knitting machine using a power screwdriver to turn the crank for me.

This actually works better than you would think. 🙂

I pruned and fed the plants in the indoor garden. Gosh, they really look a lot nicer. Look at how nicely the lavender plants cleaned up.

The miniature roses had gotten pretty bushy, and I kept seeing some aphids on the new growth. I aggressively pruned the plants back to remove more than half of the growth, sprayed the plants well with Neem oil, and then gave them some fertilizer. They look somewhat sparse now, but the new growth is good and I’m not seeing aphids. I really needed to get the size of the plants under control anyway as they were getting close to the top of the growing space under the grow lights.

There aren’t any new rose buds yet, but I think that this was a good course of action to manage the aphids. Some of my other plants have started to put out blooms, the African violets being the stars of the month.

So, the indoor garden is looking pretty good, and the difficult month was finally coming to an end. My wrists still hurt, but I was definitely on the way back to “normalish”. I decided to head out to buy a fast-food hamburger treat for myself Tuesday evening. I love these little trips out of the house; each one is a little adventure that really perks me up.

This trip was really something, a surreal adventure that is still playing out.

I had just cleaned out my car (Stumpy) a couple of days before, and before I left on my outing, I gave him a fast little vacuum job and brought in the trash cans from the street. Gosh, Stumpy looked good! I took off to the hamburger joint where I scored my favorite burger, some onion rings, and a chocolate shake. This is a lot of fat and salt, and I was going to have it anyway!!! Did I mention that my server looked just like Dylon on The Great British Bake Off? He gave me a coupon for free ice cream if I completed an online review of the food/service. Yay! Free ice cream!! On the way back I sneaked some onion rings from the bag as I drove past the high school where I used to work. It was early evening, and there was a car parked along the street above the sports stadium and field, the driver packing things into the back of his car. Someone finishing up sport practice, I thought to myself as I went by. Still looking at the school, I remembered how much I loved working there, how much I loved the kids, how much I loved the greenhouse attached to my classroom…

I had to stop at the light at the intersection by the school, and I remember that I was very focused on the oncoming cars before I started moving with the green light because… high school intersection… crazy new drivers… must be careful…

The light changed, I slowly started out, and there was a sudden flash of light and movement to my left as I crossed the intersection. I was hit by a car that had run the red light; poor Stumpy was sent careening across the intersection and ended up dropped onto the median of the street I had been crossing, now facing directly at my old classroom and its greenhouse. Kind of ironic, right? The collusion alert system in the car immediately activated and there was a voice checking on me and calling for emergence responders. A witness arrived soon after to help, and a teenaged girl started directing traffic. The witness was a Lacrosse coach, and I wondered if he was the driver packing up his car when I passed him by the sports field. The fire department arrived with paramedics who got me out of the car (taking my car keys out of my hand and leaving them with the car), into an ambulance, and off we went to the nearest hospital with an emergency department: I had some serious chest pain going and my blood pressure was something else. “Don’t worry,” said the paramedics.” We got your food for you out of the car”. Did I mention that this was a little surreal? “Did you know that you were hit by a Humvee?” Yep. Surreal.

So, I had a great little emergency room visit. I had some testing that determined that I wasn’t having a heart attack, but I did have a couple of broken ribs. The interactions with the trauma physician were kind of hilarious as she didn’t quite know what to make of my CT results… “you have a lot of interesting structures in your lungs,” she told me. “You seem kind of dry… you need to drink more water.” Whatever. It must be the diuretic that my doctors prescribed because they are more concerned about some other things going on… like pulmonary edema… and heart failure… somehow, she focused on the wonky kidney results and didn’t notice the rest. Have I mentioned surreal? I had called my son to come get me home because I didn’t have a car or door keys any longer, and he packed me up and got me out of there at that point. Five hours after picking up my fast-food, I finally started home again with my son, a little wobbly, drugged up on pain killers, and still in possession of my hamburger. I ate a couple of the cold onion rings in the car as he drove through the night…

I’m pretty sure that my poor car Stumpy is totaled.

…and the phone rang. The police finally called. They were with Stumpy, and he was now in the parking lot of the high school where I used to work, right outside the door I used every morning next to my old classroom. We turned around and headed back to the police at the accident scene to make my statement and to get the house keys out of the car. The police officer was wonderful; she was still making her way through all the calls and witness reports, but it absolutely looked like I had been hit by a driver who illegally ran the light. She made the arrangements for the car to be towed and stayed with it for me. I ended up hugging that officer and giving her an audible book recommendation. My chocolate milkshake was in the Stumpy’s cupholder, still cold with the straw in it, and I took it back. Of course I did. As we drove away the officer was doing a search for the book I had mentioned to her. Goodbye old classroom. Goodbye Stumpy car that I loved. Thank you both for all the good times.

Surreal.

Aftermath: My wonderful insurance has stepped up and is handling everything. My neighbors are telling me not to worry about the rental car yet: they will drive me anywhere I want to go. The CT scan at the ER picked up on a couple of issues that I need to follow up on, and I already have new appointments with my doctors to do that: the atelectasis in my lungs is back, and something is going on with my thyroid. Who knows, this all might have been a blessing in disguise.

My wrists are strangely better, and I finished knitting my socks.

My hamburger, when I warmed it up and ate it the next evening, was still delicious!

I found the coupon for the free ice cream when I finally cleaned out Stumpy in the tow lot Friday. I plan to leave a great review…

Stumpy was a 2018 Subaru Forester, and I can’t praise his safety features enough.

The Scleroderma Chronicles: and today’s new words are…Paroxysmal Atrial Tachycardia

So, finally the heart results have come back. If you haven’t been keeping up with all of my latest and greatest developments in the slow-moving train wreck that is called systemic sclerosis, let me quickly catch you up.

Over the summer I started to notice that my Fitbit was alarming frequently because my heartbeat was high. My heartrate was jumping suddenly from a moderate mid-70s bpm to over 140 bpm: cue the panting! I’d have to stop whatever I was doing to lean over while I caught my breath, and then it would be over. Sometimes my chest hurt, and I was pretty sure that this was contributing to my fatigue.

All of this craziness happened while I was trying to make hats on my Sentro knitting machine.

This is what I described to my cardiologist as my adventure on the stairs: I had watered the lawn, came indoors, walked up the stairs and was then suddenly profoundly out of breath.

I do have a long history of shortness of breath, and I’ve been diagnosed with several heart and lung issues that explained my symptoms: pulmonary hypertension, cardiac fibrosis, fluid around my heart, lung disease, and… yeah. I’ve been short of breath like this for a long time and I’ve just been dealing with it as my new normal. Still, the Fitbit was new data, so I sent an email to my cardiologist, and he ordered up a 30-day heart monitor test.

Tuesday afternoon the results were in, and my cardiologist contacted me with the results. It’s kind of a good news/good news/bad news diagnosis. I have a type of supraventricular tachycardia called paroxysmal atrial tachycardia (called PAT for short). I had to do some google searches to understand those crazy terms. The commonsense translation would be: sudden onset rapid beating of my heart’s upper chamber (the atrium). In even more simple terms, my heart rhythm slips out of control suddenly and the upper chamber is beating waaay too fast. Here’s the good news: this is a pretty benign heart rhythm issue (no blood clots, heart attacks or strokes here!!), and it can be treated (probably). The bad news is… I’m stuck with it, and it is pretty unpredictable. The other bad news is that I should go on oxygen more often in the daytime as PAT episodes seem to be triggered when my oxygen levels drop. That’s why it hits when I’m folding laundry, or right after coming up the stairs, or when I rush to the door to answer the doorbell…

Hannah: Listen, the doorbell is enough to give anyone a heart attack!!!

Why wait on a new drug? Well… I’m just now recovering from a pretty bad flare that hit my tendons, wrists and knees with paroxysmal fury. Paroxysmal is a great word, don’t you think? What is really crazy, my heart symptoms improved while I was down with the flare, making me wonder if the two are somehow connected. I want to wait to start a new medication until after my rheumatologist has a chance to sort out what is happening with my poor wrists and knees. I am suspicious about calcium being involved somehow, and the treatment for PAT involves calcium channel blockers. There may be no connection if there are different pathways involved, but still… calcium is the multi-headed monster of the moment with new calcium deposits appearing on my arms and legs, osteoporosis, and a previously floated notion that I might have pseudogout (which is caused by calcium pyrophosphate crystals in joints… wrists and knees being hit the worst… and my knee x-rays showed that I had calcium deposits in the tissue around my knee…). My cardiologist is okay with a delay in treatment with the understanding that I need to contact him if things get worse.

I just love my doctors!

So, here is the lesson from this adventure. Data really changes a conversation. Having that picture of my Fitbit made a huge difference; after months of explaining that I had sudden shortness of breath things changed with the one email and attached photo. The results of the heart monitor test have now returned a data-driven diagnosis that helps me understand what is happening and makes treatment possible. It is helpful to email your doctors (instead of making phone calls…) as you have a clear record of your interaction. Google with abandon!! Rely on the advice of your doctors; they went to medical school after all, but try to be an active partner in your treatment plan.

Dang. There is another diagnosis on that growing list… no one will believe me so we should just keep this quiet. Paroxysmal Atrial Tachycardia.

In the meantime, the cats are keeping their eyes on me!

Postscript: I forgot to mention, that of the three types of supraventricular tachycardia, PAT is the one that is the least common. Figures. Once a zebra, always a zebra!!

The Scleroderma Chronicles: The 39% Imposter Syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Imposter Syndrome.

But only 39%.

Hannah and the CoalBear: Signs of Fall

Hi. I’m Hannah.

There was a huge flock of blackbirds that hung out in the backyard this week; there were so many that the CoalBear was a little worried about going outside. The days are getting colder and there are dead leaves in the catio for Mateo (AKA the CoalBear) to chase. The grasshoppers are all gone, and the squirrels are stealing food from the birdfeeder and storing it in the planters on the deck. Those squirrels are really getting out of control: one of them now barks at us from the garage roof, hanging off the rain gutter, and when that happens, we’re too scared to go outside. Bad squirrel, bad!!

Look at what’s happened to our tree!!! It is a kind of funny colored…

It was sort of a busy week. The Mother of Cats had two appointments and left us alone for hours. Then she was busy most of the rest of the week finishing up knitting the sweater that she has been working on. I love this sweater! It is fun to sleep on, and chasing the yarn is great. The Mother of Cats, however, was not very good about sharing the sweater, and then she took it off the needles, tried it on, and then packed it away on a shelf where I can’t reach it. Why does she do these things?

Today she blocked the sweater, and it is covered up with towels so I can’t lick the wool which is one of my very favorite things to do. As soon as it comes out from under the towels, however, I will have my way with it!!!!

In the meantime, the Mother of Cats is back to working on her blanket that was packed away for months and months and months. Look at how cool this blanket will be!

The Mother of Cats says that this is the next big project that is getting done.

So, that was kind of the whole week: abandoned for hours, knitting, and crazy animals that make going outside kind of scary. I’m going to go pester the Mother of Cats for some extra tuna and then I’m going to go take a nap.

Mateo: I’ll hang out with the Mother of Cats in the indoor garden while Hannah’s asleep.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

The sweater is La Prairie by Joji Locatelli. This was a challenging knit with lots of elements to juggle at the same time: a charted pattern, color changes of yarn, and lots and lots of bobbles!! I had to make modifications to the sleeves as I worked to conserve some of the yarn colors, and I still may need to rip back the cuffs and knit some more to make the sleeves longer; I’ll know the sleeve length better after blocking is done. This is absolutely an individualized knit.
All my sweaters are safely put away in plastic lock-top bins. Sorry, Hannah.
The blanket is the Nectar Blanket by Ysolda Teague. It keeps growing on me, and I’m now thinking about hunting around in lace books to look at different options for the edging. The original pattern calls for a garter stitch edging, and I keep thinking that I need some more lace… I may need more yarn, too…
The appointments were to get my pulmonary function test done, and then a follow-up appointment with the pulmonologist. I have gained back more lung volume, and he is really happy with my progress.
I took my little purse-sized emotional support chicken with me to the testing appointment. Then we went to the grocery store and Starbucks.