It was a lovely week last week; hot and sunny with cooling afternoon thundershowers. Perfect. I rested up the entire week recovering from the exceptionally busy week I had the week before that and got lots done outdoors.
The new kitten, Mateo, continues to grow at an accelerated rate and is eating like a bottomless pit. He is now 3 months, 3 weeks old and is much less clumsy but still unable to jump up onto counters. Whew. No rush there. By the way, do those front paws look kind of big to you?
Hannah has recovered from her visit to the vet and all the vaccinations and is returning to her playful self. There is a little problem here, though… she wants to play with the kitten all the time and me or her toys… not so much. I’ve been giving her more attention during the kitten’s naps and she is slowly rebounding to her previous endearing interactions with me and her toys. This has been a big month for her, after all, and she is coming through it like a trooper.
The garden continues to flourish in the good weather but I have some concerns for it as there is another heat dome building and this time it will be much closer to Colorado. I took pictures of the flowers this afternoon as I’m not too sure what they will look like in another week…
There is a lot of blooming going on with the roses and for some reason the insects haven’t been munching on them as much as usual. Look at how happy and fresh these blooms look! This is the second blooming of the season and I am feeding the roses again this week in the hopes that I can get a third blooming next month.
The garden is full of volunteer plants that are popping up from things I put in the garden in years past. The big winners are snapdragons… they are everywhere! I put in a picture showing all the new buds that are emerging on the plants (2nd from left) and one with dried seed pods that already dropping seeds on the same plants (3rd from left). I am moving some of the seeds to gardens in the back flower beds as I work clearing out weeds and I’m hoping that there will be a new crop of snapdragons back there next year. I’m also seeing cute little Johnny-Jump-Ups appearing in the gardens like the little purple flower in the last picture. It’s becoming kind of a Darwinian garden in this flower bed over time as the plants that are more successful are taking over my flower bed and other places in the yards.
I haven’t said too much about it, but I’ve been battling tendonitis in my right shoulder that was putting a huge crimp in my knitting activities for the last six weeks… the pain radiated down my arm and I lost all feeling in my fingers and some function. The concern, of course, was that my knitting days were coming to an end due to joint and nerve damage from my systemic sclerosis. My rheumatologist started me on a new drug and sent me to physical therapy and I am finally, finally, recovering the use of my arm and can knit more than a half hour at a time again. Whew! People, I am back!! Am I buying any more yarn right now… no. Sadly, no.
I got busy on a new sweater and made some good progress this week. I am making the Rock It Tee using some great speckled yarn from the stash and I am so pleased with how it is working out.
The tee is constructed from the top down and you knit back and forth while shaping the raglan sleeves and the V neck in the front. In the picture on the left you can see that I have just joined the knitting below the V neck to allow me to knit in the round (so much easier on my hand) and the picture on the left shows the raglan sleeve shaping. I am almost at the point where the sleeves will be taken off and placed on holders and then it will be simple knitting in the round to the bottom of the sweater. Yay! My next ball of yarn looks a little darker so I am going to start blending it into the current fabric as soon as I’m below the sleeves.
The Ten Thousand Books of January was great! I had just finished a book about books, doors, keys, and some crazy-ass magic associated with them, so I was a little worried about this one too. Nope. This was a straight forward book within a book that told a great story. I really enjoyed it and loved every minute of the books, doors, keys, words, and crazy-ass magic.
Have a great week everyone.
Read a little, knit a little, and garden like your heart can’t live without it.
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!!
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.
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?!!!
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.
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.
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.
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.
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.
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)
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)
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)
“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.”
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.
As the pulmonologist walked me to the door out of the clinic that day he casually said to me, “I really admire your attitude.”
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.
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.
Well, this was an exhausting and fraught week, wasn’t it. I mean, I struggled to knit the week was so bad, and then if that wasn’t enough I logged some personal drama myself. As in…
Yesterday I couldn’t walk on my excessively ill-behaved legs!! I hit bottom after a couple of days of noticing that I was having more breathing issues and sporting blue lips again. What is up with this, 2021? Did 2020 leave you some type of User’s Manual? Just drop that sh*t in the nearest trash can and behave yourself!!
In a normal year I would have called for help and gotten myself into a medical center, but in this year I stayed in bed on oxygen, drugged up, and snacked on the crackers and bai drinks that I keep upstairs. It’s got to be inflammation, I told myself, so I’ll just sleep this off. Yep. Today I’m up and managing like nothing happened. I blame the weather… I absolutely blame 2020 for lingering bad vibes… I blame too many trips in and out of the cold garage…
No week or year can be absolutely bad, right?! There was also lots to be happy about. I had great packages on the way to me (squishy mail and the 23andMe DNA kit from my last post), a flourishing indoor garden, two really engaging books to read, and my goodness (!!) the Secret Life of Cats (and dogz) shawl is about as cheerful as a piece of knitted work can be. I’m still thinking about my resolutions for this year (but getting my Covid-19 vaccine is at the top of the list), so I’m just going to ignore all the newsworthy events of the week and jump to what was up at home.
I have ONLY ONE knitting project going on at the moment, but it is a doozy. Look at this explosion of color wonderfulness!
I totally lost control and ordered yarn for myself last week and I’m practically dying with the need to cast on more projects. Maybe just a little pair of socks? I know that I need to stay away from sweaters, but wouldn’t a cowl be a nice little things to have stuffed into a project bag… I have new yarns with names like “Naughty Chair” and “Troublemaker” that are insisting that I should cast them onto needles as soon as possible. Little projects like that are easier to manage when staying in bed all day with a cat sleeping on you… Do it! Do it! Do it! the yarns chant from the yarn stash…
Hannah has been spending a lot of time in the indoor garden, and I have to admit that it seems to be doing well even with her knocking plants over and using some of them as toys.
Hannah especially likes the owl in the garden that is supposed to be watching over her… yeah. I had to evacuate the owl to a safe location this afternoon. Several of the jade plants have been staked this week to help prop up the branches that Hannah has shoved over. I think that the problem is that Hannah is growing quickly and spaces that she previously moved through easily are now too small for her so… plants get knocked around, lamps knocked down, and worst of all, she misses some jumps and falls off of ledges that she used to have no problems with. Suddenly that little window sill isn’t quite big enough! Anyway, back to the garden. One of the orchids is blooming and another is putting out a stem, so the winter is cheerier than I first expected. The African violets are still putting out lots of new buds, so the craft room, where the garden is, is currently my happy place.
I started two new books this week and am still reading them, but both have completely captured my attention and I’m planning on finishing at least one of them before the weekend is over.
I’ve been caught up in The Huntress and really enjoying it but yesterday in bed called for an audiobook so I started the second book, To Sleep in a Sea of Stars. Now I have a real conflict as I like the Paolini book so much I want to cast on a new knitting project and just listen to it, but the Kate Quinn book is also excellent and I am so close to finishing it I should buckle down and just finish it off… but I can’t knit as easily while reading a paper book. Life is full of these trade offs. Obviously I should finish the paper book as fast as I can so that I can cast on a pair of socks… in blue yarn… with gold sprinkles… the name of the yarn is “Cloud Atlas” which would be nice to knit while in a sea of stars, don’t you think? That’s the plan.
“Naughty Chair” and “Troublemaker”, don’t worry. I haven’t forgotten about you. I happen to have 3 little project bags and lots of needles!
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!!
“Naughty Chair” and “Troublemaker” are produced by Hue Loco.
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.
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.
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 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…
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.
Wow. We’re getting kind of close to the end of the year. These last two weeks just kind of flew by for me as I spent most of them either 1) asleep or 2) knitting. That’s right. I am drowning in knitting projects, dreaming of color, yearning for more yarn, and pretty much out of control. My two autoimmune diseases, Sjogren’s and systemic sclerosis, also decided to be out of control for several days as I slipped into a flare, loaded up on more drugs, and spent days in bed mindlessly listening to audiobooks that I can’t remember now and watching television that I normally would never consider… last Sunday the idea of a shower was so exhausting that I just stayed in bed all day and watched Russian figure skating. I don’t want to brag or anything, but this may have been an historic low for me… if I end up watching monster truck demolition derbies I will definitely have hit bottom…
In the meantime I have been making lists of things to do in my journal. Good heavens, I am going to need a few more weeks in the year. On the other hand, since we are talking about 2020, it is probably best to just hustle it right out the door as soon as possible and ignore the list!
Anyway, I magically emerged from the flare early this week and I’m back to knitting like crazy and dreaming of new color combos to put together some additional projects. Maybe I ordered some more yarn too. Hey, things are getting crazy out there is Covid-19 land, so best to stock up, right?
The next knitting MAL that will be run by Sharon from Security (Casapinka‘s poorly paid and overworked staff member who is currently outraged about the mouse that ran through the palace in an episode of The Crown and is also hiding out from the ringworm that has been brought into the house by a newly acquired staff member joining the Casapinka operation… ) is the highly anticipated Secret Life of Cats (and dogz). I have the yarn, I bought the pattern, and I am waiting with great anticipation for the first instructions to drop on December 1st. Oops. That is like… NEXT TUESDAY!!! I am in the middle of Slipstravaganza (Stephen West), and it is growing into an absolute monster. Must. Knit. Faster.
I am just driven to get this shawl done. I absolutely love the way the colors and textures are working out as I knit the shawl. I did hang back on this project and waited for other people to knit and show theirs off before I cast on; the final product is just stunning and I am motivated to get as much done as I can before Secret Life arrives next week. I don’t think that I will get it all done in time, but hopefully I will be into the final clue soon. It is now too large to show off well on the needles so the big picture will have to happen after I get it all cast off. I understand that the cast off takes about 5 hours… this is the dark side of getting into a MKAL with a lot of other chatty and supportive knitters. 🙂
Meanwhile I did get a few other things done in the knitting world. I finished up my socks made with Hue Loco yarn (colorway Elixir) and wound up the yarn for the next sweater that I want to make. Oh. About that sweater. I am going crazy with the color combos. I wound the yarn that I first chose, and then decided to switch to a warmer fall colored pinkish yarn. Sigh. What do you think?
The sweater is Solvi by Jennifer Steingass, and that picture to the left is her copyrighted photo that I swiped off Ravelry. The soft black yarn will be the sweater body, and the blue Hue Loco was my first pick for the contrast, but I’m thinking that I will be a lot happier with the pinkish Six and Seven Fiber yarn on the far right. The pinkish yarn is called “Forever September” which kind of clinched the deal for me. Best time of the year, right?! All inputs gratefully accepted on my color choices. I also have a fabulous red yarn with black flecks that could be used. I’m drowning in color decisions, people!!
I almost forgot to show off the socks. Here they are… Tada!!
Hannah and I are are spending more time working with the indoor plants where she excels as a helper. Did I mention that she is shredding the fronds of my palm and carrying the bits that she is able to remove from the plant around the house to use as toys? Still, it is a huge plant and if she is happy, I’m happy, and even the palm seems to be happy as it has started growing two new fronds since Hannah started giving it so much love.
Most of the plants are putting out new growth now and there is very little blooming going on except for the orchids that I brought home from the grocery store. The African violet is getting huge, and the jade plants are putting out lots of new growth in response to the pruning that I gave them last summer. My jade plants don’t bloom, but boy do they respond well to pruning!
I listened to two silly military science fiction books this week that stole plot elements and characters from at least a half dozen other books in the genre and made endless references to the game of chess, movies, and other science fiction books with reckless abandon. If you have been steadily reading science fiction for over 50 years like I have then you get most of the jokes and catch the popular culture and movie references, which made the dialogue a little snappy with the inside jokes, but it also seemed like the authors were two guys showing off their credentials to help me overlook the fact that they weren’t all that original in their thinking. Anyway, the pace was rapid, the story line inventive (well, if you scramble enough plots together you get lots of twists and turns, right?), and the best part was if I fell asleep and missed a couple of chapters it was no big deal. 🙂
I think that I should allow these books to remain nameless. Just another chapter in my flare last week!
Well, that’s it.
Have a great week, everyone!!
Please stay safe.
Read a little, knit a little, and garden like your heart can’t live without it.