My fatigue lately has been off the charts. I struggle to get the simplest of tasks done, and to be honest I just don’t feel like getting out of bed for days on end. I have been slowly, slowly sewing on a quilt top over the last few weeks. It is soooo exhausting to pin two fabrics together, guide the fabric through the sewing machine, and then to stand up to iron the seam. I handled all of this by 1) sewing only for an hour a day, and 2) lowering the ironing board so I didn’t have to stand while ironing. Take that, you nasty, exhausting fatigue!!
When I noticed some strange terminology on my last heart imaging test report, I contacted my pulmonologist about it, and he ordered a CT scan of my lungs. (You can read about that adventure here.) I knew that something was up when I got a call from his office telling me the date and time of the earliest possible appointment with this doctor. The nurse had intervened and made the appointment for me ahead of time. Then there was a call from the cardiologist’s nurse that was the same; an echocardiogram and appointment with that doctor had also been scheduled for me in order to secure the earliest possible appointment. Kind of the harbinger of a tough appointment, right?
Today I had a pulmonary function test and met with the pulmonologist soon afterwards. We joked about the horrible year we had both had. (He is a pulmonary critical care specialist who has been on the front lines of Covid care for two years now; for me lockdown never ended and the BLZ was running wild.) We laughed at my summation of the year: Crushed by Covid. We decided that “Crushed by Covid” could be the name of a really sad band. Then he whipped out his laptop and had me move over to look at it with him.
He had prepared for my appointment with a spreadsheet of my lung function tests over time and my latest lung scan along with that of a normal person. The spreadsheet showed that I was losing volume in my lungs. The scan of a normal lung was really interesting (old biology teacher here…) and then we looked at mine.
Um… my lungs were really cloudy. Like frosted glass. Like… “Hey. Is that what they call ground glass lung?” I asked.
“Yes. That is exactly what we’re looking at. That’s why I wanted you to come in. This isn’t the type of conversation that you have over the phone,” he replied.
Ground glass is not good, folks. Ground glass is the type of lung imaging that Covid patients with pneumonia have. Covid presents like systemic sclerosis because there is an extreme immune response going on in the lungs; both are aggressively treated with drugs that target the immune system. I also have some honeycombing that is the beginning of fibrosis; first the inflammation (which creates the ground glass appearance), then the fibrosis follows. My ground glass lungs are, in his opinion, absolutely not Covid. It is not likely to be just pulmonary edema. It’s systemic sclerosis at its worst. This is interstitial lung disease.
So, it is not good. On the other hand, this is good. I’m in trouble, but the problem has been identified early on and that means aggressive treatment now may stave off the worst of the fibrosis. I am so glad (and lucky) that I googled those crazy medical terms and then followed through with an email to my pulmonologist.
I’ve been referred to a surgeon for a lung biopsy procedure. Evidently that will land me in the hospital for a few days. Following that, if things go to plan, I will be started on more aggressive immunosuppressive drugs. He is going to talk to my rheumatologist about starting a course of chemo and an anti-fibrotic drug. One of the last things that my pulmonologist said to me was, “It’s okay to cry about this, but we have a plan.” That’s when it hit me that this might be really bad; lockdown will continue, and the fatigue is probably going to get worse. Oxygen 24/7 is right around the corner.
Crushed by Covid plays on. What a sad little band it is.
This is the last update for the year 2021. You know, 2020 was a pretty bad year for both me and the world, but 2021 just plain outdid itself. THIS HAS BEEN A HORRIBLE YEAR!!!! Seriously, I have been reflecting on all the horribleness of the year, and it is multilayered in the just plain awfulness of it. Here is some of the angst, anger, and sadness in a nutshell.
If you aren’t wearing a mask these days, shame on you!! I have been in lockdown for two stinking years (!) and I am over all your anti-public health nonsense.
If you are one of the doctors who told me that there wasn’t anything that you could do for me (and to not come back), or that I had sleep apnea, or that I needed to exercise more, or that my tests showed that I was fine and you would just continue to monitor my symptoms… shame on you!!! I finally received credible diagnoses this fall (from new doctors) that explained my symptoms. You know, the ones that you ignored or dismissed all those times I came to get help… It is good to get diagnosed, but in this case it is also a mixed blessing as my condition cannot be reversed and management is going to be difficult. Shame. On. You!!!
If you are one of the people who believe that the election in the US was stolen and that the answer is to impede the ability of American citizens to vote, or to create a provision that allows the legislatures of some states to just overturn the results of elections, or to resort to violence… shame on you!!!!
Did you notice that the number of exclamation marks kept growing? That’s how much shame is attached to those targets. There, I got that off my chest and let’s hope that things go a little better in the coming year.
True to its rotten black heart 2021 went out in absolutely dreadful and ironic fashion. First the dreadful.
Last Thursday, December 30th, we had a high wind event in my state of Colorado as a major weather front pushed its way towards us over the Rocky Mountains. In the area around Boulder, Colorado the gusts were extreme (one was clocked at 115 mph) and the sustained winds through the day were around 75 mph. Several fires started and swept through dried fields and brush towards housing developments and towns with horrifying speed. There was nothing that could be done as subdivisions, stores, and hospitals were evacuated; the fire crews set up base in the parking lot of a mall where they could best defend themselves while waiting for a break in the wind. No joy there throughout the afternoon and early evening. There were heartbreaking scenes of burning homes by others covered in Christmas lights. People parked along the major freeway hoping to see if their home was still standing. The historic downtown area of a town I have frequented in the past was lost.
At around 3pm I realized that the worst fire was near my son’s home in northern Westminster. As the evacuation zone continued to grow to within a mile of him we started to make plans to get him and his pets out safely. It was a nightmare as firetruck after firetruck rushed north towards the fire line in the night past his windows. By midnight the winds had died down, the fire stopped its spread to the south, and my son was safe. Daylight the next day showed that the damage was just horrific. Almost 1,000 homes have been lost, thousands are displaced, and the hunt for the missing is ongoing. There is information about all of this here.
In a cruel twist of irony, after failing to deliver any real snow all fall and early winter, the winter storm arrived New Year’s Eve with snow, icy roads, and bitter cold. Like, we started the day at 3 degrees Fahrenheit yesterday. Serious, serious cold after weeks of warm sunny weather. All those poor people who escaped with only the clothes on their backs in the wind/fire event now have to deal with this. Bad 2021, bad!!
And that, thankfully, was the end of the year.
I also finished my Kevat sweater in the final days of the year.
I did finish the sweater with the ribbing and I-cord to make nice open and clean edges. I decided to block and try on the sweater again before knitting on a little lace edging onto the bottom; if the length is exactly right there won’t be any lace added. I did do a little math, however, and I do have exactly the right number of stitches to do the lace. It’s a sign, right?
Hannah and Mateo (AKA the Coalbear) and I all wish you all a Happy New Year. May things take a turn for the better with the coming weeks and months.
And 2022, you had better behave yourself or I’ll be sending you out on a walk of shame, too. I do have to warn you, however, that I am a little concerned with how you are starting out…
Because this year we are going to learn how to cope with a million new Covid cases a day in the US, and I am going to deal with this whole broken heart thing that I have going on, and we are going to f*cking save democracy. Shape up quick 2022, because this is the tough time, and you had better show some backbone, because I expect you to fight like you really mean it for the things that are really important.
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…
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?
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.
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?!
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…
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.
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.
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.
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.
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.
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.
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.
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 HypertensionEdition
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.
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.
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…
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.
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…
All of a sudden it is really important to understand fibrotic diseases and how to reverse the damage caused by Covid-19.
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.
I am an American. I live in an integrated neighborhood in a diverse city: we are in an uproar right now.
I am a biologist. We are in an uncontrolled outbreak of a new, highly contagious virus with a high fatality rate.
I am the daughter of parents who were raised in the Great Depression.
I am an autoimmune disease patient. My latest blood results just came in, and I am losing ground.
I can see the storm clouds on the horizon, but right now I am maintaining my peace and making plans for my future as I knit in the garden, surrounded by shafts of sunlight coming through the leaves of the tree above me.
In the eye of a perfect storm, I am outdoors seeking peace in my garden with the sunshine all around me. In a little while I’m going to head into the house and do what I can to address the issues swirling around me.
Another week. It is just crazy, but with sunny warm weather the days seem to be going a little faster. The lawns have been mowed and I am working in the gardens now clearing out the debris of last fall and planting seeds into the bare spots. I managed to get my new roses planted and am now working on clearing out the gardens in the back… so many dandelions for the bees right now, so I feel a little guilty. Luckily there are lots of other things that I can get done out there before I dig and clear those last gardens.
So the pandemic is kind of overwhelming for me right now. The news here in the US is full of people storming the governmental offices and demonstrating to be allowed to reopen the economy. I get that, but what is insane is people demanding that their lives be returned to normal. You know, no more masks! Packed beaches! I want to go to the movies and to restaurants. I want everything to be the way it was! I refuse to take a vaccine! I don’t care that we don’t have testing! This is just affecting old people anyway, and it’s just fake news, so let’s just go back to normal!!!!!
This was me five years ago when I was first diagnosed with scleroderma, Sjogren’s disease, and all the rest that came crashing down on me in the months that followed as all of the test results and specialists visits happened. I get it. The loss of your former life can be crushing. Get over it. To pretend something is not happening is not “living without fear”, but rather just burying your head in the sand. It is happening. Be brave. Put on your mask, make the adjustments that you need to in your life, plan for the long haul, hope for the best, and plan for the worst. We will make it, but not if we all just act selfishly.
I finished The Splendid and the Vile this week. Oh, my goodness. This is the book that I needed right at this moment. Imagine blackouts, nightly bombings, fires, thousands of casualities, and a pretty darn hopeless outcome as the nation prepares for invasion. Your allies are gone, and your friends just don’t want to get involved. In the midst of almost certain disaster Churchill emerged in Great Britain as the man that they needed at that time. Hugely energetic, positive, honest, ecentric, and ruthlessly demanding of the people around him, Churchill played a long game over years navigating his nation’s way though what can only be described as desperate times. His leadership and the development of central operations that placed and maintained a wartime footing over years was just inspiring for me and a great counterpoint to the nightly news. This book unpacked the early WWII years and made the people involved in the British effort come alive. I am so glad that I read it.
Now I am again picking away at several books at once trying to settle on one to carry me through the next week. I started a book called She by Pete Brassett because I had the audible version along with the book; I also kind of like British detective books so it was appealing. Oops. A book about a serial killer. What was I thinking of? I then started a science fiction book that is the last in a series that I’ve been reading. The Last Emperox by John Scalzi is set in a scenario where civilization as they know it is collapsing and the rich, powerful corporations are all scrambling to secure as much profit and security as they can in the unfolding chaos and uncertain future. There are machinations, betrayals, assassinations, and blantantly unscrupulous business practices that completely ignore the welfare of “the little people”. What was I thinking!! This is perhaps not the best book for me to be reading at the moment. I can go back to American Dirt (desperate mom tries to escape Mexican cartel and get to America and safety… maybe not) or return to The Mirror and the Light (more political maneuvering with a unhinged leader at the helm; death and betrayal is everywhere…), or just give up and read some nice Japanese cat comic books that I have. That’s the ticket! I am going to focus on The Complete Chi’s Sweet Home for a few days!
My needles have been busy this week. You know how it is. You can work for days and days without seeing any progress, and then suddenly it is apparent how much you have actually gotten done.
Then there is the knitted Maya cat that I am making for my son. The knitted Jonesy needs a friend, right?!
You can’t see the cat in the above knitted cat rug? Huh. Maybe I should show it to you in another format.
I’ve also been knitting and knitting on my new V-Neck Boxy sweater. I am about 9 inches below the armhole now and am approaching something that might be looking a little like a sweater.
Things are starting to come to life out back. I have an immense shrub by my back deck that is almost as high as the rain gutters. It is now covered in blossoms.
Remember my very unhappy roses that I put back outside after they spent a winter being babied in the house under grow lights? They are slowly toughening up, and today I saw this:
Well, that’s all for the week.
Please, please, everyone, be safe!
Remember to read a little, knit a little, and garden like your heart can’t live without it.
Happiness is something that can be a little elusive these days. Are you totally tired of being home and seeing the same things all day long? Obviously it is time to make something good smelling and yummy in the kitchen.
I also got my latest quilt finished early this week. It is now chilling at the foot of my bed where it makes me feel happy every time I see it.
Today the day started out a little gloomy with threatening rain showers. No. Just NO!! It was Earth Day and I was determined to break self-isolation to go to the local nursery to score some plants. So I did!
I had some ideas for putting new roses into the front flower bed and was on the hunt for small landscape roses that would bloom all summer. I hunted online, found some promising candidates, and then searched through the roses at the nursery where I found…
I loaded three of the rose bushes onto my cart, and dodging around other people (some of whom were not wearing masks… what is up with that?), I got though the check out okay and loaded everything up in the car. There were some Clorox wipes involved along the way as I handled the cart, keys, and door handles… Hey. In my case a little paranoia is a good thing. Big time paranoia is even better!
On the way home from the nursery I decided I might as well go wild while I was out wearing my mask and gloves, so I checked out the parking lot of the grocery store. It was almost empty, so I ventured inside, grabbed some groceries of the perishable variety, got gas for the car, and even put it through the car wash. Totally successful outing! While I was on the way home again the sun broke out and the afternoon became just beautiful. Sunshine! I can’t tell you how happy I was driving home with the sunroof open in a clean car carrying groceries and new rose plants. It felt almost normal. 🙂
Once I was in the house again (and all my groceries had gone through the Clorox wipe routine…), there was the monster orchid all lit up in the afternoon sunshine, glowing happily in the living room. The perfect happy lift at the end of a happy outing.
Good days in a sad time continue.
Have a good week, everyone. Be safe.
Afternote: Why all the paranoia and Clorox action, you ask? I’m an immunosuppressed senior citizen with kidney and lung disease thanks to my multiple autoimmune diseases. Still, sometimes you just need roses…
The pandemic goes on. My country continues to act in alarming and perplexing ways; not only is there zero chance that I’m ever going to be able to leave self-isolation, but I despair of getting a new kitten. My joints are very ill-behaved and I don’t think that I will be getting that injection of steroids into my hip anytime soon. I used Instacart to buy my groceries for myself this week and the shopper, who wasn’t wearing a mask, substituted my order for fried rice with steaks (?!). I MISS MACKENZIE SOMETHING AWFUL!!! (sniff) Okay. Enough of that. On a scale of 1-10 I’m somewhere around a 2. I have food, yarn, books, and my garden. I have steak!
I’ve been knitting like crazy all week, but I’ve been bouncing around between three projects. Check it out.
Are you tired of my Monster Orchid yet? It just keeps going and going; it has become the centerpiece of my living room and I feel a rush of happiness every time I glimpse it. Much smaller, and no where as showy, is this miniature orchid that I have stationed on the china hutch.
There is lots of sunlight coming into my downstairs rooms now and I have moved miniature roses to collect that light. They are really putting out the new growth and are champing at the bit to be let outside. Not yet, roses, as it is still below freezing some nights, but your day is coming soon!
I have to admit that I am in a mood right now. We are living in extreme times and I yearn for clear leadership and well articulated goals. Is it too much to expect long-range planning to deal with the current situation and the next several stages to come with the Covid-19 pandemic and associated economic impacts? I’ve had a somewhat less than rosy outlook about what is actually happening because…
You are looking at the reason why I bulk buy everything. This book was just gripping in its presentation of the event of the 1918 Influenza pandemic and presented many lessons. Medicine needs to be science based. The suppression of information during a disease outbreak leads to deadly outcomes, and quarantining works. Community actions and public health measures can make enormous differences in outcomes. Pandemics come in waves. Viral mutations are evolutionary events; we can take actions to lower our risks, but biology is relentless, mutations do happen, and assigning blame is pointless. Pandemic planning is all. The identification of the infected and their isolation is an absolute necessity. Some politicians in the US are calling for the country to reopen right now; their logic is that some people need to die in order to maintain our way of life. I wish I could zap this book at them right over the airways to be directly transferred into their brains…
So what am I reading while the news is filled with conflicting and overwhelming news reports?
Both books are well written, very compelling, and validate my sense of how things should be right now in our time.
Well, that’s all for the week.
Please, please, everyone, be safe!
Remember to read a little, knit a little, and garden like your heart can’t live without it.