The Scleroderma Chronicles: Matters of the Heart

The Blue-Lipped Zebra (BLZ for short) has been busy the last three months (once she was fully vaccinated for Covid-19) and lots of testing and doctor appointments have happened. Lots of diagnostic hypothesis have been pursued and tested; the BLZ has received several emails from doctors that let her know about good news: you don’t have pneumonia!! your heart looks good!! your kidneys are maintaining!!

All is good. Go visit your baby bunny and don’t worry about it…

Hello. BLUE-LIPPED Zebra. Chest hurts. Zebra is dizzy. Zebra pants as soon as she moves around. Zebra is absolutely sure that everything is not fine at all!

Did I mention that the BLZ got fully vaccinated? Ever since that happened (and the BLZ got a steroid injection for her ill-behaved hip) her fatigue and brain fog have receded into the background. Quite frankly, the BLZ is feeling pretty frisky and clear-headed these day between bouts of dizziness and panting episodes. She has decided that enough is enough and she is on the move to get to the bottom of what is going on!

She contacted her doctors and health providers and had them forward her the entire text of her test results. She read these results carefully and then spent some time consulting with Dr. Google to figure out what some of these words meant. The BLZ is so grateful for that biology degree and years of related job experiences.

The BLZ has limited systemic sclerosis. What she learned was…

  • A general rule of thumb, the 15% Rule, can be used to describe the number of systemic sclerosis patients with serious complications associated with their illness. For example, 15% of patients will have Sjogren’s Disease, or digital ulcers, or lung disease, or maybe pulmonary arterial hypertension. These complications are sometimes rare in the general public, but for systemic sclerosis patients they can be common.
  • A large European study found that the majority of systemic sclerosis related deaths were from heart complications (26%) or were pulmonary arterial hypertension (26%) related.
Time to stop and smell the roses. This is a little disappointing… my doctors have been reassuring me that all is fine because they are focused on lung disease. There are a lot of bread crumbs in the test results that suggest heart problems.

Then then BLZ made an appointment with her internist (the primary care physician) to go over the test results with her and to help her prep for her cardiologist appointment next week. Don’t you think that was smart?!!!

Mateo: Very smart!!

Here’s the summary of my appointment with my wonderful internist. My face was blue and I struggled with dizziness in her office: she entered a new diagnosis into my chart that says I’m cyanotic and told me to press the cardiologist for a prescription for day time oxygen so I can carry portable oxygen with me. (“Now we’re talking!!!” barked the BLZ.) She read the test results for my CT lung scan and echocardiogram and agreed with my understanding of what the test results were saying. She told me what tests to ask for from the cardiologist at my appointment. Here’s the summary:

  • I have physical findings in my lungs that consistent with pulmonary arterial hypertension. The summary results of that test say “mild to moderate” and even say that the loss of lung tissue and an enlarged pulmonary artery are due to PAH. Huh. Look at that. (“I’m just shocked, shocked!” snarks the BLZ).
  • The tissue of the heart (the muscle) is scarred and too stiff to beat well. This condition is called diastolic dysfunction and is a type of heart failure. The echocardiogram states that my diastolic dysfunction is Grade II, which is moderate. Scleroderma is attacking my heart; 15% of systemic sclerosis patients have diastolic disfunction. While there are lots of reasons why people develop diastolic dysfunction, for me the picture is different as it is a common complication of my systemic sclerosis and not a result of say… uncontrolled high blood pressure.
  • The estimated pulmonary pressure from the echocardiogram is difficult to measure in my case (Dr. Google had to teach me about incomplete TR jet and other obscure heart-related terms) and is most likely being undermeasured. The number now is the upper limit of normal; twice in the past it couldn’t even be estimated.
  • I have a newly developed hole in my heart called a cardiac shunt.
  • My heart is broken damaged by scleroderma.

So what should the BLZ do about all of this? The internist and the BLZ hatched a plan in which she should insist request direct measurement of the pressure in the right side of her heart (right heart catherization) and another echocardiogram that looks at that cardiac shunt while she is exercising standing up. Like, maybe the BLZ needs to be climbing stairs… The BLZ is just thrilled… Also, the BLZ wants day time oxygen-to-go. Yes, please. Right now, please.

Also, the BLZ is considering taking someone with her to the appointment and will have the cardiologist send the internist his notes following the appointment.

Also, when life get tough, get a kitten!! BLZs love kittens!

So, this is an adventure in progress, but I do have some gems to share with others struggling with their own medical misadventures. Get your own copies of your test results and physician notes after appointments. Google like crazy to learn what the obscure medical terms mean. Educate yourself about your illness/condition. Stay off social media as you do this and read journal articles from legitimate sources like the Rheumatic Disease journals and articles posted by the NIH. Ask another knowledgeable person to review your test results to help clarify/validate your thinking. If my journey here can serve as a roadmap for even one other person battling their way to a diagnosis, then this post was a success.

And remember to be brave.

It is good to have a diagnosis, even if it is a shame.

Zebras are brave!!

The Scleroderma Chronicles: World Scleroderma Day, 2021

Here we are again… World Scleroderma Day.

I’ve written about scleroderma on this date for several years now. I just went back and read what I wrote last year and decided that I did a pretty good job. I talked about getting diagnosed, the complications that are being caused by my disease, and what that means in my life. Here’s that post if you would like to check out my take on things last year.

This is one crazy-ass disease and it certainly has complicated my life. In the year since I wrote that last post I have hung in there (hey, staying home for a year on oxygen slowly improving was actually good for me) and then emerged from strict lockdown to get lots of testing to try to sort out what is the cause of my blue-lipped status and the source of other little issues that I have going on. While thinking about what to write today I thought of a few things that I haven’t written about before and some things that are new since the last post.

The correct name for the type of scleroderma that I have is limited systemic sclerosis. Systemic means that every part of my body is being impacted by this disease, and the word sclerosis means that scarring is happening in tissues all over my body. What’s happening to me is not obvious to the outside viewer, but it is insidious and ongoing all the same. Somehow, by some mechanism that isn’t clear, my systemic sclerosis is being driven by antibodies that I’m producing that react with the centromeres of my cells.

What’s a centromere? I’m shocked, shocked I tell you, that you just don’t know that! Seriously, the centromere is that little place in the middle of a chromosome that can be seen when cells are getting ready to divide. This is a little tricky because the only time we can see chromosomes is when cells are getting ready to divide and they have already copied themselves: the little pinched waist in the middle of the chromosome where they are connected is where the centromere is located.

Got that?

This image belongs to the NIH; as a taxpaying citizen I hope that it is okay for me to use it here. 🙂

Somehow something happened to a protein located in the centromere area of the chromosomes in my body that made it look “different” and my immune system responded by making antibodies against that protein. The antibodies that are produced are called “anti-centromere antibodies” and their presence is highly suggestive of my form of systemic sclerosis. The alternative explanation is that my immune system just went berserk, decided to attack my own cells, and began making these antibodies on its own. I personally think that something changed and then the antibodies were made as a response. My money is on a virus.

It really doesn’t matter all that much since, once the immune system is triggered, the immune response can’t be turned off and one day you are sat down in some rheumatologist’s office and carefully told about what is happening to you and what to expect in the future. Your skin will get thick. Your blood vessels will be so damaged that they will thicken and spasm shutting off blood flow to parts of your body unexpectedly. The scarring tissue will build up in your digestive tract and damage the smooth muscles that you need to move food along. Your kidneys will lose function. Your nerves will be damaged. Your lungs need to protected since they are especially vulnerable to damage from accidently inhaled stomach acid. If your disease flares badly enough you can develop autoimmune pneumonia. Your tendons, muscles, and joints are all in trouble. You are in trouble. The damage will progress and there is no cure.

“This is really serious,” one of those early doctors told me. “This is like a diagnosis of cancer, but of course, some cancers can be cured…”

Well, shoot. Good thing there are drugs to help control symptoms and to slow the progression of the disease by dialing down the immune system.

Yay for drugs!! I am on drugs to shut down my stomach acid production (my lungs are doing pretty well) and on drugs to crush my immune system into submission. I’m on anti-inflammatories to control other cellular pathways activated by those ill-behaved antibodies. I get steroid injections to help my damaged joints and inflamed tendons. I have strict dietary limitations. I do lots of physical therapy. I’m on oxygen overnight to keep my red blood cell count in a normal range. I dress in layers to help control the spasms of my circulatory system, a phenomenon called Raynaud’s. I knit almost every day to keep my fingers from stiffening up and contracting. I now have a shiny purple cane to help me walk.

Every day is a challenge, but I am fine.

So what is new this year?

Scleroderma has damaged my heart. They are still testing to clarify exactly what is going on, but so far they have established that there is scarring in the heart muscle that is making my heart “stiff” and that somehow I developed a hole in my heart. There are suggestions of pulmonary hypertension, but I need more testing for a definitive diagnosis. No wonder I turn blue in the face and pant when I walk.

Oh, yeah, there is also a pandemic going on.

One of the greatest ironies of the last year is that serious cases of Covid-19 share similarities with the clinical symptoms of scleroderma crisis. Immune system-mediated pneumonia caused by an overreacting immune system is a hallmark of both conditions. Then there is this… Remember those drugs that I take to crush my immune system into submission? I take two drugs for that purpose. One of them, hydroxychloroquine, was (irresponsibly) politicized by influential individuals early in the pandemic and therefore became short in supply; my muscles and joints immediately rebelled when my supply lapsed early in the lockdown. The other drug that I take, mycophenolate mofetil, is linked to poor response to the Covid-19 vaccine. I am vaccinated and I am making anti-Covid antibodies, but since my total antibody count is very low my doctors aren’t sure I can fight off a Covid-19 infection fast enough to stay out of the hospital. I’m advised to continue to mask and isolate because… blue face, hole in heart, stuff like that…

For me, lockdown goes on.

So, here are the takeaway messages from this post. Be kind. There are illnesses that are really debilitating that you can’t see when you look at that person walking into a store from a handicapped parking spot. Don’t be dismissive of conditions with funny names that you’ve never heard of before. I know that it is hard to understand conditions that are beyond your experience and that you can’t really see, but take a moment to let someone tell you about their illness and the daily challenges that they embrace. If you meet a person with an autoimmune disease, they deserve a hug. If they have scleroderma you should give them two hugs! Be understanding of people who are still wearing a mask in public; perhaps they are braver than you can imagine.

Today is World Scleroderma Day.

Go Team Teal!!

Note: If you would like to know about different types of scleroderma you can learn about them here.

The Saturday Update: Weeks 22 and 23

I’m going to be honest here: June has been really challenging so far. My entire right arm is numb and in pain and there isn’t much knitting going on. My appointment book is completely filled up with medical appointments and the bruises are collecting at an alarming rate; did I mention that June is Scleroderma Awareness Month? Yep. I’m aware. Scleroderma has gone into overdrive this month. Gee, if it wanted more attention it should have just asked!

In solidarity with scleroderma there have been other disasters this month. The car that was bringing me home from GI testing this week developed engine trouble (I ended up in an Uber, hopped up on drugs, leaking fluids from an unmentionable part of my nether region… best ride across town ever!) My refrigerator started shrieking in the night as one of the fans failed putting my stash of cheese at risk (yes, I have seriously cornered the market in… cheese). Oh, did I mention that I also had a scary close encounter with my neighbor’s pit bull? Seriously, it has been challenging to do anything except deal with all of this stuff. On the other hand, I have handled things; a new refrigerator is coming (I must save the cheese!), my neighbor has implemented more safeguards to contain her dog, and I have learned how to use Uber!! I’ve completed physical therapy and am walking much better. The car that broke down was repaired at little cost. My arm is in a brace but I am rocking voice-to-text on my phone. I’m knitting again… slowly.

Still, I am warning you, June, knock it off!! I have knitting and stuff to do.

Hannah: June would be a great time to get me a little kitten companion!!

Knitting

I finished my Noncho (Sharon from Security and Casapinka) this week. What a nice, versatile addition to my wardrobe this will be. I also made some progress on a sock but really the big accomplishment this week has been the Noncho. My project notes on Ravelry are here.

Garden

It’s gotten hot and the garden has taken off. I’ve been weeding steadily and it is really exciting to find flourishing plants and emerging flower buds. Look at what is going on right now:

Seriously, the garden is starting to explode with color. My rose plants are covered with buds and the main show is going to start in just a few more days. We had so much rain earlier this year the rose bushes grew really well and things are looking good. Okay, June is picking up a little.

Books

I’m enjoying The Cold Millions while I work on my second sock. So far it is pretty good and applicable to economic issues that we are dealing with today in the US.

Have a great week everyone.

Read a little, knit a little, and garden like your heart can’t live without it.

PS: The gastroenterologist told me that I can’t eat cheese any more. Or chocolate. Or caffeine. Or carbonated drinks. Alcohol is absolutely forbidden.

I’m pretending that I didn’t hear that part about the cheese.

The Saturday Update: Weeks 19 and 20

The last two weeks have been busy, but not all that productive in the crafting/gardening/reading departments. I’m still busy going to appointments, doing my physical therapy (hey, I have graduated from the walker!!), and putting my yard and gardens back into order. Somewhere during the last two weeks the CDC here in the US changed their recommendations on mask wearing and then my state also lifted the mask mandate in most situations. Evidently we are now going to rely on the honor system to protect people at risk from other people who are unvaccinated and unmasked. Oh, dear. I have been pulling weeds and considering my options…

Late one afternoon I hurried and pruned my roses in the rain so I could get frost cloths over them to protect the new shoots from an overnight hard freeze. The resident bunny, all alone since the Great Horned owl caught his mate, joined me in the rain as I worked. It’s been that kind of week.

So here is my dilemma: what is a seriously compromised individual on immunosuppressant therapy to do? I hit the internet, of course.

As luck would have it, Science Magazine (the journal of the American Association for the Advancement of Science) recently published an article reporting out on the current data from several studies on this very issue. As it turns out, there are some immunosuppressant drugs that are seriously impacting the efficacy of the Covid-19 vaccines, and one of those drugs, mycophenolate, is of particular concern. Rats!! I’m taking that drug to control my scleroderma. I stopped reading the article when I got to the part about only 9% of patients on mycophenolate produced antibodies to the Pfizer or Moderna vaccines. Gosh darn it, I was vaccinated with the Pfizer vaccine. I wrote an email to my doctor and requested an antibody test to see if I was producing anti-Covid-19 antibodies. Late that afternoon I got a note from her nurse letting me know that I could just make the appointment online and go get the test on my own. I immediately did that and scored an appointment across town at a clinic that I could just make that evening if I jumped into the car and drove really, really fast…

So I drove across the Denver Metro area like a bat out of hell with the prevailing traffic flow and arrived at the clinic with 10 minutes to spare. Yay! Um… why is the parking lot so empty?

The clinic closed 20 minutes before the appointment; there was a goof in the scheduling system. I called my health provider from the parking lot and made sure my test request would transfer to another clinic and/or time and then sadly drove off. I bought myself chocolate on the way home. Why is everything so hard?

Thank heavens there is Hannah to balance out the little bumps in life. 🙂

The next day I got the test done after another drive across town and also heard back from my doctor. She recommended that I return to strict isolation because 1) the mask mandates had been lifted and 2) there was a strong chance that I wasn’t protected from Covid-19 no matter what the antibody test result was. Later in the day an email arrived carrying a letter from the Scleroderma Foundation that advised that I and other patients in my situation continue to wear masks and practice common sense safety measures including limiting contacts. Darn. When will this ever end? I’m starting to feel a little picked on here…

The next morning the antibody test result arrived: I have antibodies!!! Yay! About time I was cut a break, don’t you think? I’ll still be wearing a mask and will be really careful, but I think that I am safe to continue to go to appointments and the occasional book store or yarn shop.

Do you see why I’m not getting a lot of stuff done? All of this driving and decision making is just exhausting.

Knitting

The great thing about physical therapy is that you get better. You get to take afternoon breaks with hot packs on your sore muscles. The bad part about physical therapy is that, for some reason, the inflammation associated with building up muscles and loosening my bad boy tendons (I’m finally rehabilitating from a ruptured tendon in my hip) makes my joints misbehave. My hands especially have decided that they want to be babied and they definitely don’t want to knit. Still, I have made a little progress over the last two weeks:

My Noncho (Casapinka) is finally starting to take shape. The simple stockinette knitting in the round is easy on my hands and I can’t wait to get it done so I can wear it in cool offices during appointments. My socks, which are a take on assigned pooling knitting, are more adventurous with the texture stitches and the purl sections not to mention turning that heel and picking up stitches. Still, I am getting somehere with them. I’m inventing the socks as I go and will take time to explain what I did then they are done, but right now I’m just enjoying the fun of an adventurous bit of knitting fun. Don’t those socks make you happy just looking at them?!

Garden

The weather has totally been messing with us the last two weeks. It has rained… at lot. We have had snow followed by really warm sunny days. The the windy days arrived late this week to knock the new plants around under cloudy skies that threatened severe thunderstorms and tornadoes.

Ugh! I am getting lots of weeds pulled, new bedding plants planted, and sections of the lawn reseeded. Really, I have been working, but all I really have to show for my time is…

Hannah and her hydrangea plant that I pulled inside for a couple of days (hard freeze warning). Hannah thought that the plant was for her and was really involved with it for the couple days that she had it. Sorry Hannah. Hydrangeas need to live outside.

Books

I just started this book. Anyone have any feedback on whether I should keep going?

I was really excited about rejoining my book club next week for their meeting about Wanderers. Nope. Guess that isn’t happening as they are meeting at an indoors restaurant and the Covid-19 restrictions are now lifted so dining capacity is back up to 100%. This is a big, heavy book. It hurts my hands to hold it. If it doesn’t get really compelling really quickly it is going back to the library.

Anyone have a book recommendation?

Have a great week everyone.

Read a little, knit a little, and garden like your heart can’t live without it.

The Scleroderma Chronicles: The Blue-Lipped Zebra Gets a Credible Hypothesis

At last.

If you have forgotten about the tales of the Blue-Lipped Zebra, that’s what I’ve taken to calling myself as I struggled over the last few years for some definitive answers to my blue-lipped shortness-of-breath issues. Really, things got pretty darn extreme late in 2019 and I started to get really pushy in finding some answers. Here’s the posts that I wrote then: The Blue-Lipped Zebra Report, The Blue-Lipped Zebra Gets Some MRIs, and The Blue-Lipped Zebra Goes on Oxygen.

Hannah: All of that happened before I came to take care of the Kitten Mom.

To summarize all of the adventures of the BLZ (that is code for Blue-Lipped Zebra), about 5 years ago I caught the flu and was really sick. I never fully recovered as shortness of breath lingered and lingered, and eventually I noticed that my lips turned blue after showers and when I climbed the stairs. I steadily worsened and began to call (and call, and call…) my rheumatologist for help. He ordered up some testing and referred me to a pulmonologist. My echocardiogram and lung CT scan looked good, but my pulmonary function test showed some asthma. My pulmonologist decided to that I must have asthma because of my Sjogren’s Disease, and maybe… (cue the dramatic music)

Sleep Apnea

so I got tested for that. That test showed that I had nocturnal hypoxemia (like, I was under 90% saturated blood oxygen for over an hour) so I was started on overnight oxygen. All my doctors dusted off their hands, said “Job done!” and that was that. As far as they were concerned the BLZ had been put out to pasture.

My symptoms improved and after 6 months I was taken off the oxygen again.

Over the next two years my symptoms came back and got steadily worse. To further complicate things my systemic sclerosis and Sjogren’s symptoms also worsened. I was constantly fighting a flare of my autoimmune diseases (joint and muscle pain, fatigue, brain fog, hair loss, GI nastiness) at the same time I struggled to walk without stopping to put my head between my knees because I felt faint. I ended up on the floor more than once. I panted like a freight train when going up stairs and now my entire lower face was looking blue at times. I coughed up mucus every morning and it sometimes contained streaks of blood. The BLZ was back and running wild. My rheumatologist ordered tests; once again my heart and lung tests looked good. Disgusted with my complaining, my rheumatologist decided that maybe I should be prescribed antidepressants, or maybe I should be tested for… (cue the dramatic music)

Sleep Apnea

I fired that doctor and found another. I met with my internist, who ordered more testing, and I had a first appointment with the new rheumatologist who had been recommended to me by the local chapter of the Scleroderma Foundation. The new tests showed that I had severe inflammation of my tendons, a destroyed hip joint, a condition called polycythemia (too many red blood cells), and nocturnal hypoxemia again. I was put back onto oxygen and the pandemic then closed everything down. I asked about the possible cause of my polycythemia, but there wasn’t anything that really jumped out to my doctors. The BLZ was ordered into strict isolation for the duration of the Covid-19 emergency.

Now I am fully vaccinated and back into the world and pushing my way though new testing and have acquired a couple of new doctors after ending up in urgent care with chest pain, a blue face, and shortness of breath. The testing early this year showed that I had more fluid around my heart and that the pressure on the right side up my heart was up into borderline high range. Because of my systemic sclerosis I am high risk for a condition called pulmonary arterial hypertension so that high pressure reading triggered an alarm: I was sent to a cardiologist.

The cardiologist was completely dismissive of the two clinical observations that had generated the cardiology referral, was borderline disparaging of my anxiousness about my not-yet-vaccinated status (there are other people who are sicker…), lectured me about getting cardio in three times a week, and insisted that I be tested for… (you know the drill: dramatic music time)

Sleep Apnea

“At least you didn’t offer me antidepressants,” I said. I limped away, fighting tears and panting for air, wondering why I have to keep firing doctors and hunting for new ones. “Suck it up, Buttercup,” said the BLZ as I drove home. “You have a new pulmonologist to talk about this with.”

There I am, waiting for the pulmonologist, minutes before he gave me the unifying diagnostic hypothesis.

Three weeks ago I met with the new pulmonologist, one that was recommended by my new (wonderful) rheumatologist. He asked me lots of questions, dismissed the notion that I have sleep apnea (“What a shock!” snarked the BLZ), and then dropped the bomb. I have a cardiac shunt. Blood from the right, unoxygenated side of my heart, is passing through a hole in my heart and disrupting the flow of oxygenated blood to my body. He ordered a new echocardiogram with bubbles to look for the hole and to confirm the diagnosis. He also wants to check how much fluid is around my heart and is concerned about the right side pressure levels, which were the two reasons why I was sent to that cardiologist (that the BLZ wants to kick in the face…) in the first place.

Hannah: The new echocardiogram is in three more weeks. The Kitten Mom is getting a little anxious while she waits…

As the pulmonologist walked me to the door out of the clinic that day he casually said to me, “I really admire your attitude.”

Oh, oh.

The BLZ’s whiskers started to tingle.

You know I googled for information about cardiac shunts from the parking garage before I even drove away from the appointment. Almost immediately the condition that he suspects appeared on the page: Eisenmenger syndrome. I have every single one of the symptoms that are listed on the page. This is the unifying diagnosis, if the echocardiogram confirms it, that explains the blue face, shortness of breath, nocturnal hypoxemia, polycythemia, and the inflammation that has been driving my two autoimmune diseases, systemic sclerosis and Sjogren’s disease out of control.

Why did it take so long to get here?

Eisenmenger is rare.

The BLZ is barking with laughter.

Me, I’m working on my attitude as I wait for the echocardiogram appointment.

The Year Alone: Reflections on Wonder, Luck and Hope

There is a storm on the way. These things look a little unbelievable on the weather forecaster’s computer display, but there seems to be a massive low pressure area cut off from the jet stream sliding relentlessly towards a part of the United States that will set up a big weather event. Snow. Lots of snow. Maybe feet of snow. I’m pretty stocked up but I needed a few items for my weekend cooking, so I headed to the grocery store late in the day to grab them. Oh, oh. The store was packed and the shelves were already emptying out. Shoppers radiated urgency as they raced down aisles disregarding the one-way Covid-19 traffic patterns. New shoppers were pouring in the door as I checked out and there was a whiff of panic as they passed me. This is crazy! How much snow is really coming, I wondered as I loaded my bags into the car and escaped the chaotic parking lot. I hadn’t seen anything like this since the early days of Covid-19 as the lockdown approached…

The lockdown. This week is the anniversary of the first Covid-19 death in my state, Colorado, and in just a few more days it will be the anniversary of the lockdown that started my year at home in isolation. So many people have been sick, and way too many have died. So much has been lost by so many people; this is the greatest tragedy of my lifetime. For me, however, in strict isolation, the year has rolled by with me in my own little world mostly disconnected from the greater world outside; my story is a lockdown story, not a Covid-19 story. I have been disappointed by people who kept me trapped in my home by refusing to wear masks or to comply with public health recommendations, and brought to tears by the kindness of strangers. A year is a long time; looking back now it seems like it passed in a flash even though I had some real struggles along the way.

Last night one of the local news programs had people post the last picture on their phone before the lockdown happened. Here’s mine.

My son’s kitten Jonesy in a tube attached to the cat pillar. He’s a 6 months old kitten in this shot.
Jonesy today as a handsome young adult at 18 months old.

This year of isolation has been 2/3’s of Jonesy’s life and the entirety of Hannah’s life as she was born within the first few days of lockdown in the middle of March. Looking at Hannah and Jonesy it is so obvious how long this year has been. Looking at Hannah and Jonesy it doesn’t seem all that bad, but of course this has been an extraordinarily tough year.

I sewed some cloth masks early on and wore them on the few occasions I had to leave the house: a science geek who had read way too many books about epidemiology, I suspected airborne transmission based on anecdotal reports from the New York City outbreak. That mask picture is the 2nd one on my phone after the start of the lockdown. As the debate about mask efficacy raged in online forums I wore mine anyway and ignored people who made negative comments. Almost a year later I was wearing two masks, one a highly regarded Vogmask, as I got that first dose of Pfizer vaccine.

“Do you trust the vaccine?” asked my neighbor yesterday. “Absolutely,” I replied.

I feel very, very lucky to get this Pfizer vaccine. Through chance I have a degree in molecular biology and worked for years in an immunology research lab. The molecular trickery used in this vaccine to harness my immune system to protect me from Covid-19 is the best thing that happened all year in my opinion.

I’ve been assigning lots of labels to this year spent mostly alone with my little tuxedo kitten, my books, and my bottomless pit of a yarn stash. This has been the year of astonishment. The year of disappointment. The year of living dangerously. The year of setting priorities. The year of realigning values. The year of healing. The year of decluttering. The year of absolute outrage. The year of lies and fake news. The year of masks. The year of Zoom. Finally, today, it is the year of luck and wonder.

I do want to apologize for my use of the words luck and wonder. There is no real luck in a pandemic at all. I absolutely know how awful and devastating this has been for so many people: how profoundly unlucky so many of us are that this happened to us right now in our lifetimes. The mutation and jump to humans of the coronavirus that causes Covid-19 was an event that has been anticipated and feared for a long time. It’s like waiting for an earthquake in California (The Big One) that will be massively destructive. You know it is coming, but you don’t know when or exactly where it will strike, and how devastating the damage will be. You prepare for it and hope that you are ready. How ironic, after growing up in California waiting for The Big One to hit, the crushing event of my lifetime came from a virus. In spite of the basic awfulness of all of this, I am learning to value the little crumbs of luck that came my way during my time in strict isolation while other people recovered so much of their lives and I was left behind.

I am so grateful for the luck, the random chance events, the technology, the human kindness, and the science that helped me get through this year.

My wonderful pandemic kitten was a failed adoption returned to the shelter and rejected by everyone else before I arrived to find her alone standing in a little cat tunnel. The last kitten left in the kitten room; her 6 litter mates had all found forever homes days before. Returned, rejected, all alone: the one thing that I needed. How lucky is that?

That’s little abandoned kitten Hannah on the left, 6 month old Hannah in the middle, and Hannah tonight hanging out with me while I type. Hannah was the one thing that I needed to pull me out of growing sorrow and a sense of abandonment when I realized that the the pandemic was raging unchecked in the USA as the result of a deliberate policy set by my government.

I was diagnosed with nocturnal hypoxia and received the oxygen equipment 5 days before lockdown. How lucky is that? Because of the oxygen I have been steadily improving for months.

I can order anything that I need online and have it delivered to the house in just a few minutes, hours, or days. Seriously, almost anything. A hamburger? It’s on the way!! A case of paper towels? My Instacart shopper is on it! A pair of new sheepskin slippers? Amazon makes it happen! More yarn… yes!! A plethora of indy yarn dyers will ship me my heart’s content. What would have happened if this pandemic hit in the 1990’s? How lucky that the technological infrastructure that allows all of these supportive services to exist is there for me and everyone else who needs them.

Every time I stream a movie on Netflix I feel lucky.

I was raised in the 50’s and 60’s: I can home cook from scratch and have returned to the meals of my childhood. Comfort food in a modern crockpot. How lucky is that?

I have a SMART PHONE that does everything that I can imagine doing. It banks for me. It remotely checks me into my doctor’s appointments. It tells me the route to drive to come home after a long day in a medical center. It connects me to so many other people in Facebook forums. It answers all of my questions: a couple of YouTube tutorials can handle any crisis. I can text all of my friends and family no matter what is happening outside. I feel lucky, people!!

I met with my primary care doctor via Zoom. I feel grateful for Zoom, people, even though most people in America hate its guts by now.

Knitting and reading groups have sprung up online that have connected me to wonderful, supportive, and positive friends from all over the world as we share our books, knitting, and cats. Then there is this blog. I tell you, I feel so lucky that this is all possible.

The Sharon Show, a MKAL run by Sharon from Security, a snarky cat who loves whiskey a little too much…

I can get unlimited ebooks and audibooks (well, as much as my bank account will allow…) instantly delivered to my Kindle tablet. I feel lucky.

In my year of isolation, oxygen, and limited adventures out of the house my painful joints have settled down, my kidney function has improved, and my red blood cell count has fallen into normal ranges for the first time in years. I am doing much better in many ways. Okay, I’m looking at a lot of medical testing to identify the cause of persistent chest pain, and there is still the problem of the severely damaged hip joint, but I’m in much better shape at the moment to tackle this then I was a year ago. I feel lucky.

Winter will end and the garden outside will come back to life soon. I feel lucky!!

I spend too much time wondering about things. Left alone, I have a lot of time for my imagination to run wild as I wonder about everything. I wonder if my roses all survived the dry winter. I wonder if the vet will yell at me for not getting Hannah in for her shots this year. I wonder what would have happened if this pandemic happened 20 years ago. I wonder what if it hadn’t happened at all. I wonder if I should throw away so many of my belongings as I declutter. I wonder why do I have a rare disease (systemic sclerosis) that appears to share some characteristics with Covid-19; what were the chances of that? I wonder when the Big One will come. I wonder if I should write a book. I wonder how I should combine colors of yarn in my next knitting project. I wonder what is happening with the Covid-19 long haulers. I wonder why some Covid-19 long haulers have improved after getting their Covid-19 vaccinations.

I wonder why, one week after my vaccination, I feel significantly better then I did two weeks ago.

I am actually looking forward to shoveling some snow this weekend.

In the greatest of tragedies there are still little crumbs of luck and rays of hope.

May our bad times end soon and we all have days of wonder, luck, and hope.

The Saturday Update: Week 4, 2021

It was a crazy, crazy busy week with lots going on. I had medical testing, an online court appearance to give testimony in a neighbor’s custody case, and a nail in one of my car’s tires. My medical status continues unchanged (blue lips, chest pain, shortness of breath), but the machinery to get to the bottom of things is now in motion. The first couple of rounds of testing have generated a referral to cardiology and hopefully that will happen this week. My neighbor won her custody case, and the car tire is now repaired. Whew! I spent the bottom half of the week relaxing with my knitting because I was completely pooped by all of that running around.

The Kitten Mom left me all alone THREE times this week!!

Knitting

I did make some good progress this week in spite of the trips out of the house.

My Geology socks are done!! I’ve decided to try to make at least one pair of socks each month, so these are January’s pair.

I also buckled down and did the blocking and finishing work on my Secret Life of Cats (and dogz) shawl by Sharon from Security (Casapinka). This is the longer shawl version of the project; there were also options to make a cowl or a scarf. Fun color for gloomy days, huh! I’m actually thinking that I may be giving this one away to someone who loves purple and bright colors and a scarf version made with scrap yarn from the stash may be in my future.

It snowed this week I so gave in to the urge and cast on one of the sweaters that I have been dying to get going on. I have wanted to make Goldwing for a long time, and bought the yarn a couple of weeks ago with my stimulus check. Here it is, finally started:

Look at the absolute quality help that I am getting from Hannah!!

The Scleroderma Chronicles: The Pulmonary Hypertension Edition

I few weeks ago I posted about my systemic sclerosis, Covid-19, and my decision to donate my DNA to the 23andMe Systemic Sclerosis Research Project. My DNA has safely arrived and is in the lab getting sequenced right now. I was motivated to contribute because Covid-19 is creating so many new patients with fibrosis that may benefit from this research in addition to people like myself with autoimmune disease or people with other fibrotic diseases.

Monday I had an urgent echocardiogram done and once again an eerie connection between my disease, systemic sclerosis, and Covid-19 appeared. My test was started a little late so I asked the technician if things were busy. He told me that they were very busy because there were so many Covid-19 long haulers who needed testing. After a while, thinking things over, I asked if these patients were getting heart damage. “Well, not their heart muscle, but they were developing pulmonary hypertension,” he said. Oh, oh. That is the very reason I was there getting an echocardiogram; as a systemic sclerosis patient I am high risk for pulmonary hypertension and pulmonary arterial hypertension, and I know that those are serious and life altering/ending conditions. After thinking a little longer I asked him how many Covid-19 long haulers were getting that diagnosis. “It’s in double digits,” he replied…

Double digits. At this one medical center in the heart of Denver. That means that there are potentially hundreds and hundreds of patients getting that diagnosis across my state.

I wished that I had thought to ask him how old those patients were…

The next day my rheumatologist called to let me know that I was being referred to cardiology as my echocardiogram results suggested pulmonary hypertension and that further testing was required. There is also an issue with fluid around my heart… It was what I expected, but not exactly what I was looking forward to. The only problem right now is getting me into cardiology, because, all of those Covid-19 long haulers…

It has been impressed on me that I need to double mask now each time I go out into public. I have a nice N95 level mask, but I’m also putting a medical grade mask on top of it.

Be careful, people!!

Stay safe and wear your masks!!

The Saturday Update: Week 3, 2021

What a week, what a week, what a week! We saw our new president inaugurated here in the US, I went wild and set up a plethora of new knitting projects, I had issues with my health through the week, and yesterday I spent most of the day in Urgent Care getting some testing done. Whew! Let’s just unpack the whole week, okay?

But first:

I knew there was a chance that I might be gone from Hannah for a few days if my new symptoms spiraled out of control so I installed a new Hannah cam. Alright, that was a little bit of a struggle as I hunted for screws to mount the camera (Hannah, where did you put the package of screws…) onto a shelf in the craft room. Never finding the correct screws for the mount I hunted through the garage to locate alternative screws. Got them. Then the power drill was… out of power… so I found a screwdriver. Right. There is no way these scleroderma wrists can put a screw into wood without a hole already there. Back to the garage for nails and a hammer to put a starter hole into the shelf. Hannah was a huge help through all of this, by the way. As I hammered in a nail to make my starter hole in the shelf Hannah swooped the screws off the table and onto the floor, because… it’s a cat thing. “Why is everything so hard…”, I muttered to myself as I rescued the screws and got them into the camera mount. Hannah moved up onto the shelf so she could help me work better… that little paw can work magic, right? Finally, finally I finished and checked to make sure the camera was on the network and working correctly…

The first thing I see through the camera feed…

Knitting:

I have been doing pretty good keeping my knitting WIPs under control. Then the government sent me some money and I bought yarn! Hello, just doing my part to stimulate the economy and support other people, right? I am just rolling in creative ideas for knitted projects and this week I bought and printed patterns, organized knitting kits and cast on with reckless abandon. You might say that there was a small explosion of knitting projects.

Did you get all of that? Let me tell you what’s up starting with the pictures on top, left to right. (1)I lost my mittens, so I need to make those Tinsel Mitts before it snows again. They have a flip top to cover the fingers and I’m thinking that there must be some way I can line them for more warmth. Maybe with some fleece or wool batting stuffed into the lining to keep it all extra warm around the fingers? Hmm… (2) I moved the Goldwing sweater up my queue and want to get started on it as soon as a couple of little projects move off the needles. That sweater is sooo cute and I love the yarn that I just bought for it. (3) I bought lots of bluish yarns while I was sad last spring, and now I want to stay warm without putting too much effort into it. I know that the Age of Gold shawl has lots of soothing garter stitch with a nice warm drape and good coverage so I am making it again with this blue multi yarn. (4) The group of pink and grey yarn is going to be used to make a pair of arm warmers to match my Secret Handshake cowl that I made in that MKAL last fall.

That takes care of the top row of projects. The bottom row shows the two projects, left to right, that I worked on this week along with the WIP that I carried into the week, the Geology Socks. (1)I wanted easy, calming knitting to produce snuggly warmth early in the week and went to Ravelry to look at patterns. I decided on making another Age of Gold but there was a wrap that really screamed that it wanted me to make it: Julie’s Wrap by Joji Locatelli. Darn. That wrap needed more than 3 skeins of yarn to make. Wait, wait, wait… I had 4 skeins of a dusty black cashmere/merino fingering yarn lined up for a sweater that could be directed to this wrap… bam! That yarn instantly became this wrap as I frogged the sweater and decided to knit Goldwing first. (2) The yarn on the right is to make a pair of detailed Mandalorian mitts.

Having made the kits and decisions, I then got busy. Once again, the projects are lined up left to right in the pictures above. (1) I have finished my first Geology sock and am started on the second sock. (2) I am making good progress on the Mando mitts even though you have to use three colors at once in parts of the mitts, and I need to add more detail with duplicate stitch after I finish. I don’t think that English is this author’s first language as some of the written directions are a little shaky, but the charts are golden and I’m just using the force and charging along fearlessly as I knit these mostly ignoring the directions. (3) the dusty black garter knitting is the beginning of Julie’s Wrap coming off my needles. Right now I have over 2 feet of done with 2 more feet ahead of me before I start on the twisted rib outer trim and finally the (be still my heart…) BOBBLES! that are produced in what I think is the bind off. I love bobbles! I learned how to knit backwards just for bobble production, and if ever there was a time to utilize that singular skill it is while making bobbles on a wrap that is more than 4 feet long. By the way, now that I’m knitting that black yarn I’m glad it is becoming a wrap because it is pretty darn streaky. See, a good decision!!

Scleroderma Chronicle:

Sigh. Then there is my continuing scleroderma adventure. I’ve been experiencing some intermittent chest pain that has become more severe and frequent over the last couple of weeks. When you are chronically ill you don’t call in every new development because if you did you would wear out your doctors and you’d absolutely exhaust everybody involved in your life, but when I had a 45 minute bout of chest pain Thursday night along with blue lips and shortness of breath I knew I had to get some medical evaluation started.

The medical group that I belong to has a 24 hour online “chat with a doctor” to get advice. The advice I got was to head to urgent care to get a heart attack ruled out. Okay. I can do that…

When you show up at urgent care with shortness of breath and chest pain you get double masked and whisked into a sealed exam room where you are isolated from everyone else and the medical staff wears all the protective gear available to them. Whew, that was fun. After testing and 5 hours of waiting (and starving because I hadn’t eaten just in case…) I was told that this wasn’t a heart attack (YAY!!) but that there was an issue with fluid around my heart. It’s an autoimmune thing. I need more testing and evaluation and may need to be hospitalized to get it done, but since it was the weekend I convinced them to let me go. Actually, I think that I was lucky that I went to urgent care instead of an ER as it made it easier for me to escape. 🙂 Referrals were made, summaries were sent off to my rheumatologist, and I drove home with my chest still hurting. As soon as I got home I shot off an email to my rheumatologist and went back to bed. Bad scleroderma, bad!!

My niece sent me soup today using DoorDash!

Today I’m up and doing better but taking it really easy. Yesterday was just another chapter in my scleroderma story, but it really impressed on me that catching Covid-19 would not be a good thing at all.

Wear your masks, people!!

The Scleroderma Chronicles: Coming Full Circle

Systemic Sclerosis is a rare, chronic, progressive, and incurable autoimmune disease that is included in the family of rheumatic conditions. It is characterized by blood vessel damage and the scarring and thickening of skin due to excessive collagen production (fibrosis). The internal organs can also be damaged by inflammation and scarring: the digestive tract, heart, kidneys, and lungs.

There are two main types of systemic sclerosis: diffuse and limited.

I was diagnosed with limited systemic sclerosis 6 years ago.

Hannah: Do you like my circle?

The Circle Starts: In high school I developed a mystery illness that involved intense itching, lots of rashes, sensitivity to sunlight, and swollen digits. I was a mess. It went on for a few years and then the worse of the symptoms faded away.

First Quarter Circle: In my mid twenties I was a researcher working on a scleroderma project for the Division of Rheumatology at the University of Colorado Health Sciences Center in Denver, Colorado. The principal investigator that I worked for was interested in isolating the targets of the autoantibodies that scleroderma patients made; if we found the actual proteins that the antibodies characteristic of this autoimmune rheumatic disease were targeting we would be closer to understanding what they did, and eventually closer to understand the disease process of scleroderma. Let me be clear here: my boss, Dr. Angeline Douvas, was the brains of this little research outfit and I did most of the bench work.

One morning Angie had the hot idea that we should see what happened if we did an anti-nuclear antibody (ANA) test on the polytene chromosomes of the fruit fly Drosophila, a common lab experimental animal. We knew that the antibodies produced by the scleroderma patients were sticking to the chromosomes in the nucleus of cells… what would it look like if we checked this test on the chromosomes of fruit flies which were enormous structures that were easy to look at under the microscope?

After staining we could see that on the entire chromosome a few distinct bands were stained: only a few genes were targeted by the antibodies of the scleroderma patients. What was the function of the genes, and what were those proteins, the clear targets of the antibodies made by these scleroderma patients, doing? Something important that was linked to this disease that we call systemic sclerosis (scleroderma). How was all of that tied to the damaging fibrosis going on in these patients?

Here’s the other interesting conundrum that we kicked around: what changed in these genes/proteins that made them trigger the immune system to make antibodies? There are lots of things that can change genes and the proteins that they make. Things like radiation, chemicals, environmental triggers, viruses…

Hannah: Viruses?! The Kitten Mom and I spend all our time at home hiding from viruses!!!

Second Quarter Circle: Now in my 60s, and diagnosed as a scleroderma patient myself, I began writing letters to my congressman asking him to support the National Commission on Scleroderma and Fibrotic Diseases Act, a bill which would coordinate and organize resources to study the process that is involved in the formation of scar tissue in scleroderma and other diseases/conditions. Two summers ago I met with a representative of my congressman, Jason Crow, with other scleroderma patients to make our case. Scleroderma is special, I argued, because our antibodies are a tool that can be used to unpack the process of fibrosis. Representative Crow did support the bill.

Hannah: Now, are you ready for some really crazy stuff? Hang onto your catnip mice, this gets a little wild!!

Third Quarter Circle: It is 2020 and Covid-19 has arrived. Early on we learned that this is a serious virus that causes an extreme immune system response in some individuals that is life threatening. There is severe lung involvement, blood clots, scarred lungs, injured hearts, failing kidneys… this is no joke if you are already dealing with all of this, so I and other scleroderma patients are avoiding it like the plague and retreating to our online support groups even more than usual. We share observations and experiences in these forums, and it wasn’t very long before we started to notice that these severe Covid-19 cases seemed to be awfully similar to severe systemic sclerosis. We laughed about “Covid Toes” since dealing with blue fingers and toes is a daily struggle for us. Then the news reports about Covid-19 long-haulers started to emerge, and we all started to say to each other… wow… fatigue, brain fog, muscle/joint pains, lung and heart problems… sounds a lot like what we deal with… Then some people started to arrive in our support groups who were newly diagnosed scleroderma patients who were also Covid-19 long haulers. Now every week new people, shocked and frightened by their life-altering diagnosis of systemic sclerosis, are showing up in our forums. “Gee, there are a lot of new patients arriving,” someone wrote last week…

Unbelievable, right? I decided to hunt around online and quickly found that there were a number of reports about Covid-19 and systemic sclerosis. I discovered to my shock that people with severe Covid-19 disease do share a lot of documented clinical features with severely ill diffuse systemic sclerosis patients, and there is a connection between Covid-19 and rheumatic autoimmune diseases. When there was an article in the New York Times reporting that some Covid patients were developing autoimmune disease it caught my eye, so a little more work online found this nicely written overview by the Global Autoimmune Institute that listed specific research reports and the autoantibodies being discovered in Covid-19 patients and Covid-19 long-haulers. There in the reports are listed the same, exact autoantibodies that are the specific hallmarks of my two autoimmune diseases, systemic sclerosis and Sjogren’s Disease. 2020, shame on you. This is really, really bad, even for you.

All of a sudden it is really important to understand fibrotic diseases and how to reverse the damage caused by Covid-19.

Hannah: The Kitten Mom feels like she needs to do something about this!!

The Circle Closes: The genome sequencing service 23andMe has launched a genetic research study of systemic sclerosis patients. They are screening and accepting 1000 diagnosed patients who will donate their DNA for research into systemic sclerosis. I’m pretty sure that this effort to collect more information about the genes of systemic sclerosis patients is in part driven by the urgent need to deal with an emerging flood of new patients with fibrotic organ damage due to Covid-19 infections. Tonight I completed my application to submit my DNA to the study and to participate in all their additional data collection about my disease. Remember those few, distinct genes lit up on the fly chromosome? “Go get ’em, boys!” I muttered to myself as I clicked the submit button.

Today there were 225,558 new cases of Covid-19 in the US and 3,499 new deaths.

How many of the Covid-19 survivors will eventually be dealing with a chronic, progressive, and incurable autoimmune disease?

Wear your masks, people!!

Wednesday Afternoon Update: I’ve been accepted into the research program and they have already shipped my DNA collection kit to me. Hannah is so excited!!

Footnote: Did Angie and I find a protein using the scleroderma patients antibodies? Yep. We did.

The Saturday Update: Weeks 49 & 50

What a shock to write down week 50! I have to admit that it is kind of a thrill to get towards the end of this most eventful (and not in a good way) year at last, but it is a reminder of all that I need to get done before the holidays are upon us. I’m trying to get presents finished in time to send off for Christmas and then there are my challenge goals on Ravelry and Goodreads. My Ravelry challenge goal is to get 30 knitting projects done this year and I have only one more to go! Piece of cake. I also wanted to get 50 books finished off this year and that goal is getting close with only three more books to go. We’ll just pretend that there weren’t any plans for the garden, okay? Between heat, smoke, my unhappy lungs and the pandemic there just wasn’t much progress there.

I’ve been reflecting on the year now that we are coming up to the end, but even more so on the last 9 months. I started this year struggling with shortness of breath and sporting blue lips; I felt a little desperate as my symptoms weren’t being taken seriously by my physician team and I pressed for more testing and answers. Exactly 9 months ago today my pulmonologist called to tell me that my oxygen levels were too low overnight when measured in a sleep study: I needed to go on oxygen when I slept. The next day the oxygen concentrator came just as I finished laying in groceries for a few weeks at home alone. By the middle of the next week we were in lockdown due to the COVID-19 outbreak in my state and little Hannah was born. Three months later I was able to adopt Hannah in a contact-free adoption and today we are rocking the Stay-at-Home lifestyle. This month Hannah is acting like a teenager and I’m feeling a lot friskier myself as many of my symptoms have faded into the background and my blue lips are rarely seen when I glance into the mirror; my latest bloodwork shows that I am maintaining, and I’m meeting next week with my rheumatologist (remotely) to find out what to do about other symptoms that have cropped up. Outside the world is on fire (the COVID numbers are horrific and the drama associated with our election continues…), but in the little world that I’ve built for Hannah and I things are good.

Knitting

I am trapped on Slipstravaganza Island wandering around in the chevron wilderness. I just love this project and worked steadily on it for a week before I had to call a halt to work on Christmas-related knitting. In my defense, the rows are now over 900 stitches each at this point, so the narrow garter stitch chevrons take a few hours to complete. It will be fabulous when it is done and I’m hoping to get back to it as soon as my Christmas presents are in the mail. Wait until you see this thing blocked!!

I love the colors in this shawl so much, and what you can’t see is that there is silk, yak, and cashmere in that yarn that makes it just a joy to work on. Soon, soon, soon it will be done… but not this week.

I can’t show off any of my other knitting projects because… they are secrets! Hello, Christmas presents… I have been working on other undertakings that won’t be named since I also can’t show them off, so… how about I talk about cleaning my yarn stash? I pulled everything out this week to get yarn reorganized again by types, sources, and colors and then put it all away neatly in bins to keep it safe from kittens and moths. Of course Hannah helped me with all of this; if you imagined Hannah racing through the house with a skein of alpaca yarn in her mouth you nailed it!! Then at the end of the clean-up the great “Where is Hannah?” search began…

Do you see her?
There she is! That quilted wall hanging was rolled up before Hannah found it…

Books

I just realized that the color is off on both of my pictures because my Kindle switches to the blue filter in the evenings to help me sleep. Hey, that really does work! If you don’t already know about this, try it out.

I have been reading the Cormoran Strike books by Robert Galbraith (J. K Rowling) since the series started, and I just love the complexity of the characters. In this book, Troubled Blood, Strike and his partner Robin are hired by the daughter of a long missing woman to discover what happened to her. It has always been supposed that she was the victim of a serial killer who was active at that time, but the daughter longs for a definitive conclusion, and Strike agrees to take the case. Over the slightly more than a year that Strike and Robin work this and other cases at the agency they also deal with their relationships with old lovers, family members, each other and ultimately, themselves. I have to be honest here… Strike and Robin are both damaged goods, but during this book they both confront some of their demons, move some things into the past, and begin to gain balance and perspective that makes me eager to get the next book in the series. Oh yeah, they also solve the case!

After polishing off Troubled Blood I blindly started The Last of the Moon Girls without any expectations because… I’m a little ashamed to admit this… it was also an audiobook and I needed something to listen to while knitting. To my surprise it is also a book about an old murder, also has a main character who was “different” from everyone else growing up, and who also has a very fraught relationship with a dysfunctional parent. Cormoran Strike Deja vu!! I’m enjoying this book as I listen to it, knitting away on my mystery presents, but I have to say that it isn’t as rich and complicated as Troubled Blood was. Actually, that is a good thing since it is an audiobook and I would have trouble following multiple investigations and a huge cast of characters in action; as it is this book is perfect for the task at hand as it has a straightforward storyline that keeps layering in additional characters and plot twists in an engaging manner without too many games. I kind of think I know who the killer was, but I’m not absolutely sure…

Must keep knitting and listening!!

Have a great week, everyone!!

Please stay safe.

Read a little, knit a little, and garden like your heart can’t live without it.

And wear your mask!!