The Saturday Update: Week 26, 2021

I’m not going to share much this week because… this happened.

This little bundle of charcoal fluffy cuteness came home with me this week!

He still doesn’t have a name and has spent the last two days stuffed under a couch hiding from the world in the spare bedroom.

Hannah was totally, like… YOU DID WHAT?!!

There was some hissing and growling that came out of the little Hannah princess. I thought that things would go better, but evidently not. I scrambled to get the spare bedroom kitten proofed and all of the plants in the indoor garden moved to the outdoors or some other suitable location away from kittens. The kitten meanwhile vanished and I spent a few hours hunting for him in the house since I couldn’t find him in his room. Hannah shadowed me all though the search as I started to get more and more concerned about the vanished kitten.

He was in the spare bedroom all along crammed underneath a cabinet through a gap in the back of the paneling.

Finally after midnight all was settled down and the kitten was exploring his new room.

Hannah wasn’t taking any chances and slept high on the bookshelf in my room.

Hannah: Best to be safe… he can’t get me up here!

The downside of the bookshelf is that she leaps from the shelf to my bed to get down… and then she slept on top of me when she wasn’t on the shelf.

This is going to be a rough couple of days…

Have a great week everyone.

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

PS: the Mando mitts that I knit for my niece safely arrived in California.

This is the picture that my niece sent me. So knitworthy, my niece!!

The Scleroderma Chronicles: World Scleroderma Day, 2021

Here we are again… World Scleroderma Day.

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

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

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

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

Got that?

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

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

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

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

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

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

Every day is a challenge, but I am fine.

So what is new this year?

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

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

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

For me, lockdown goes on.

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

Today is World Scleroderma Day.

Go Team Teal!!

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

The Saturday Update: Week 25

The last weekend in June and it is raining and cold outside. June, June, June… when are you going to get with the program? The calendar has finally tipped over into summer and you deliver a weekend that makes me wonder if I am going to have to turn the furnace on again? Good grief!!

The week produced a baby bunny that is hanging out on one side of my yard under a large shrub and in one of my rather wilderness-like gardens. What a cutie he is!! He shows up every day around dinner time as some sweet entertainment while I’m eating out on the deck.
He really is pretty small still; this shot gives you a better idea of his size. That shrub seems to be where he’s hanging out.

I don’t have any pictures of the garden flowers because they are just drenched at the moment, but the lawn is really happy to get all of this water after a couple of weeks in parching heat; I hope to get fertilizer and soil conditioner onto the back lawn during a lull in the rain early next week. This actually is a nice break for the plants. Hope my little bunny baby is doing okay with all of the wet.

Knitting

The big accomplishment of the week was finishing up the Mando mitts and getting them mailed off to my Knitworthy Niece in California. These were really a somewhat challenging knit, but the final product totally makes it worth the effort.

The mitts are knitted from a chart, which I prefer, so that part was good. The colorwork issues emerged early on as I had to figure out how to manage 3 or 4 different colors of yarn as I worked the mitts. I finally carried two colors in my left hand, twisting them as I knitted, and holding the third color in my right. I did catch floats and twisted yarn as I could, and still decided to just duplicate some of the details after the mitts were finished. The blue detailing on Mando’s helmet was added after the knitting was over as was the little blue object that Grogu is holding in his right hand. Whew! Then there was the issue of all the ends…

There were lots of loose ends to weave in after knitting. Good thing I had such quality help!

It isn’t obvious in the pictures, but the tips of the fingers used a new bind off for me that blends well with reverse stockinette and is nice and stretchy called Icelandic bind off. Perfect. Who wants to put in all that work to have fingers that are too tight, right? I’m thinking that I might use this bind off with garter stitch edges on sweaters and maybe on the cuffs of arm warmers.

I cleaned out the stash (again) this week after the mitts left on their journey west to the Great State of California (the land of my birth) and put together several kits of printed out patterns with the yarn to make the project. There are at least six sweaters waiting for me to get to them. I am down to only two unfinished projects so I pulled out my hibernating Ranunculus and got back to work on it. There is also a pair of socks to finish and then it will be all sweater knitting, all the time for awhile. (Did you want a picture of my ranunculus project? It is pouring rain out there, people!!! Maybe next week I will have something amazing to show off.)

Books

There isn’t all that much reading going on at the moment, but I did wander into a bookstore and looked at the books on the sale table. The first book was about a person who finds a special book that opens a new world to them. Then the next book I picked up was about a young person who found a transformative book. Then the third book was about… a book. Kismet, obviously. I bought all three books.

I can’t wait to dive into these books. 🙂

Have a great week everyone.

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

The Saturday Update: Week 24

June continues to misbehave: we had three days above 100 degrees Fahrenheit this week and several severe thunderstorms with tornados! My arm is still swollen and painful but the numbness is starting to improve; as if in solidarity one of my knees started to complain just today. Sigh. Knock it off, you guys! My new refrigerator came today and I am so happy to have dependable food storage again. Besides, it is just beautiful and shiney! The flowers in the garden are starting to bloom and the roses in particular are looking mighty fine. I have started to knit again every night and I also found some interesting books to read. I bought new glasses and ordered a bunch of fun stuff from Amazon. (Do I need purple and gold washi tape for my journal? Why yes, yes I do. I also got pink and gold replacement bands for my Fitbit and a pair of pink/grey comfy pants.) I went to the yarn store and bought more yarn… that may have not been wise, but I want to believe that I will return to full knitting capacity soon. 🙂 Okay, June isn’t being all bad… it was Hannah’s one year adoption anniversary this week.

Hannah on the 15th (her adoption anniversary date) and little kitten Hannah on the day I brought her home last year. I tried to recreate the picture from her first day home but she wasn’t all that interested and I was lucky to get the shot that I did. To celebrate her anniversary she got crispy pink paper to play in (that is always a big hit with her) and some bows to drag around. Last night I applied to adopt a kitten companion for her from the Cat Care Society and today they called me to approve the request and put us on the list for kitten alerts. Hannah was adopted from this shelter and they consider it a priority to get her a little friend. Yay!

I’ve requested a male, orange tabby kitten. We’ll see what happens. Hannah can’t wait.

Knitting

I’m working steadily on the mitts for my knitworthy niece who is a huge fan of all things Mandalorian. I am now up to the fingers of the second mitt.

Aren’t these the cutest things ever?

I need to do some duplicate stitch detail work and then there are all of the ends to weave in, but the end is definitely in sight now. I’m almost tempted to make a second pair but I have soooo many sweaters and other projects that I need to get done. This pattern is Mando (Natela Astakhova).

Garden

The roses are blooming! The roses are blooming! The roses are blooming!

From left to right, these roses are Hot Cocoa, Princess Alexandra of Kent, Cinco de Mayo, and Home Run. We had lots of rain this spring and I have been watering every day since then; this is the best crop of roses I’ve had in quite a while. I really was responsible this time with the roses as I covered them with frost clothes if there was even a chance of a hard freeze and I fertilized them early in the spring. This week they got more fertilizer and they are all looking good with lots of buds on the plants still waiting to bloom. Yay, garden!!

Books

I have two books going right now; one is text and the other is an audiobook. They both are really holding my interest and curiously they even look similar.

How crazy is it to be reading icy blue books when trapped in an heat wave. I’m only half way through The Doors of Eden and even less with The Cold Millions, but both books are thought provoking and really interesting.

And that’s all I’m going to say about them right now. 🙂

Have a great week everyone.

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

Scleroderma Update: My rheumatologist had my hands x-rayed this week and I have severe arthritis in both of them, but especially the one that is now acting up. I was kind of surprised and I’m hoping that they can do something to help with the swelling and numbness. My echocardiogram results also came back and I do have a hole in my heart, but an email came from my pulmonologist yesterday saying that it isn’t big enough to account for the whole panting/blue lips thing and he wants to do some more testing. Fun. We have an appointment next week.

The Saturday Update: Weeks 22 and 23

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

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

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

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

Knitting

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

Garden

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

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

Books

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

Have a great week everyone.

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

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

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

The Saturday Update: Week 21

Here it is Memorial Day weekend and it is cold and raining outside. Hannah and I have been hanging out indoors knitting, reading a book, and cleaning the stash. Oh, boy. There sure is a lot of yarn in the stash… let’s talk about that another day. Good thing it is raining, because I have a lot of knitting to do!

Hannah has been snoozing while I knit.

It is going to rain again tomorrow and when this is all over the outside gardens and lawn will be looking great. In the meantime, I have lots to keep me busy indoors.

Knitting

I finished up the first of the assigned pooling socks that I’m working on.

I had a skein of yarn from Chasing Rabbits Fiber Co. in the Colorful Yarns colorway designed for my favorite LYS, Colorful Yarns. The skein is mostly grey with short rainbow strips that are about 1/6 of the length of the skein. I started knitting the yarn in my usual ribbed sock pattern and was not happy with the way the colors were just stacking on top of each other. I ripped the sock out and started again with a K2P2 ribbed section at the top of the sock with smooth stockinette after that. I purled the rainbow sections when I came to them and threw in random PSS stitches in the rainbow purl strips in an effort to create some randomness in the colored sections on the sock. You can see in my second picture that I put in 1-3 PSS bumps into the purled/color strips or sometimes didn’t add a PSS at all.

What is PSS? It’s a stitch that I learned while knitting The Sharon Show in section 21 (called Catnip Garden) that is simple, added a little bump to the knitting and was sure to alter the length of the rainbow strips. Basically you purl two stitches together but leave them on the left needle. You then knit the same two stitches together, and then purl them together again before you pull them to the right needle: three stitches are made from two. You then pass the middle of these three stitches over the stitch next to it (closest to the tip) and there is the bump! If that doesn’t make sense, here is a swell video to show the stitch. On the next round I slipped the two stitches from the PSS and then finally knitted them on the next round after that. You can see the little colored slipped stitches below the purled sections in my second picture. I knit the sock from the top down; if you knit one from the toe up the little colored stitches will be above the purled sections. (Hint: because of the slipped stitches put a purl or two between PSS stitches.)

Once I got through the heel section I stopped inserting the PSS stitches in the knitting on the foot of the sock: I purled on the top of the foot while sticking to smooth stockinette on the bottom of the sock (3rd picture). I lost some of the randomness in the line up of the colored strips but that part of the sock will be in my shoe so I’m good with it. The final picture shows the finished sock with its contrast heel and toe; kind of wish now that I had make the top ribbing that hot pink too. I’m now working on the second sock now and should eventually get the pair completed.

The other knitting that is still going on is the Noncho (Casapinka) that I kind of wish was already done because it is cool with all of the rain… Hannah has been a great help.

Garden

It is raining outside!! Here are the cool pictures from the week of my indoor plants.

I’ve taken to spraying my African violets every week and they seem to like it. The leaves have lifted up and the plants are blooming like crazy. Not what I expected to happen, but the plants are responding so well I spray them down weekly now.

Books

I finished Wanderers today.

I was struggling with this book a little and wasn’t sure if I would complete it because… almost 700 pages! I don’t know how much I should say because of spoilers, but the plot involves sleepwalkers who are unresponsive to any efforts to wake them up. They never eat, never stop walking, and it is impossible to get a needle into them to draw blood. “Maybe they have scleroderma,” hypothesizes the CDC personnel attempting to understand what is happening with this flock of wanderers. Scleroderma! They had me at scleroderma. I kept reading.

Of course the wanderers don’t have scleroderma. This book is big, complicated, and pulls in lots of situational elements that are obviously based on actual people and events in the US. Amazingly, the book, which was published in mid-2019, also features a pandemic. I remember looking at the book when it was first published during those happy days when I could just head off to the book store to meet my friends; now things are changed and the impact of the book was that much more. I did like the book, but then I’m a biogeek who reads books about the CDC and outbreaks even before it became our lives.

Have a great week everyone!

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

The Saturday Update: Weeks 19 and 20

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

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

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

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

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

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

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

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

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

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

Knitting

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

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

Garden

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

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

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

Books

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

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

Anyone have a book recommendation?

Have a great week everyone.

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

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

At last.

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

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

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

Sleep Apnea

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

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

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

Sleep Apnea

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

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

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

Sleep Apnea

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

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

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

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

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

Oh, oh.

The BLZ’s whiskers started to tingle.

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

Why did it take so long to get here?

Eisenmenger is rare.

The BLZ is barking with laughter.

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

The Saturday Update: Weeks 17 and 18

Life has just been kicking my butt for the last few weeks. I have been insanely busy and struggling with my health. I need to write a whole different post (from the Blue-Lipped Zebra) to talk about what’s happening, but the short version is… we are closing in on the cause of my blue-faced breathlessness and physical therapy is a good thing, but it sure does hurt!! The weather has just been absolutely crazy here; snow, then warm days into high 80’s, followed by days of rain and another winter storm warning has just been posted for the next couple of days. Tonight there is some debate about snow… all the potted plants on the deck need to move into the garage for the night AGAIN. In spite of the weather I managed to repot lots of plants, weed and clear gardens, and also got some yard work done this week. I filed my taxes and cleaned out the office. Anyway, all of this is to explain whine about why there was very little reading or knitting going on…

So I really didn’t do a lot of stuff to blog about, but I captured some good photos during the two weeks.

With all of the crazy weather and cold snaps I thought that we may have missed the the majority of spring blooms. Nope! This week the color exploded in trees everywhere and they are looking good! Other trees in the neighborhood are full of squirrels; there are baby squirrels bouncing around in the tree in my front yard and Hannah is just over the moon with the excitement of watching them. The phlox in the front is now blooming and yesterday the buds on my trees suddenly burst open (just in time for that snow tonight… sigh). Best of all is the pair of geese that are settling down to nest at my local library. I just love Canada geese! Why look at that… spring really has arrived!!

We’ll just ignore the winter storm warning for today and Tuesday…

Knitting

I started a couple of new projects but they are still at the very early, kind of pathetic looking, stage. The project on the left is the beginnings of my Noncho (Casapinka) that is going to be a perfect layering piece for me in the cool evenings. I’m thinking that I should have some matching arms warmers too, don’t you think? The scrap of knitting on the right is the beginning of my Ranunculus (Midori Hirose). Someday it will look wonderful but it still has a way to go. I am also working along on some mitts and a pair of socks, but they are making little progress at the moment. As soon as life settles down some I’ll get more done.

Garden

Isn’t that squirrel on the base of my front ash tree cute? He is cute, but he is one of the many squirrels living in my next door neighbor’s tree. This tree, a Russian olive, is a cautionary tale of the unintended consequences of introducing species to new habitats. I guess this tree does just fine in Europe, but here in my region of North America (the state of Colorado in the US) it is classified as an invasive species. Basically a huge weed, this tree reproduces all over the neighborhood as baby trees appear everywhere, and if not removed the trees clog waterways and cause havoc in general. Part of the problem is… squirrels! The tree produces berries that the squirrels love to eat and the branches are just perfect for them to build their nests in. Even better, they are able to pull long strips of bark off the trunk to use as nesting material; the perfect home, this tree has eight squirrel nests in it!! My ash tree is within convenient jumping distance to the olive tree and serves as a perfect link in Squirrel Route One as the squirrels travel overland through trees, across roofs, and down fences providing Hannah hours of entertainment as she watches them. The squirrels carry olive fruits to far flung locations and bury them, and other bits of food that they come by, EVERYWHERE! The ground around my ash tree is all dug up with the squirrel caches and I have to pull up seedlings each year. Right now I have mothballs on the disturbed soil to discourage digging but I decided to sprinkle some Critter Ridder onto the soil to continue to discourage the little guys from digging. I headed off to my local Home Depot to get some, and… came home with the rose and the hydrangea instead. What can I say? As soon as I saw those hot, bright colors I just had to have them and all thoughts of pesky squirrels just flew out of my mind. That rose is just as bright as the picture seems and is called an Autumn Sunblaze. It is a miniature rose and I plan to keep it in a pot on the deck until fall. The hydrangea is a wonderful hot pink that I’ve never seen before, so… into the cart it went! The colors make me happy and I think even the squirrels are excited about the new plants as I’ve caught them checking them out on the deck. (They were probably looking to see if they could dig in the soil to cache some purloined garbage pickings from the neighbors, but I’m giving them the benefit of the doubt here…)

I still went back to Home Depot for some grass seed and the Critter Ridder the next day. Squirrels are cute, but they need to stop digging up my lawn!

Also, I noticed some other colors of Sunblaze roses that I want to look for. There is a dusty pink variety…

Books

I finished the Wayfarers series over these last two weeks. These are great books; interesting and thought provoking. They are rather slowly paced, but worth the time as the story slowly evolves with the characters as they confront their situations, assumed truths, and make changes in their perceived identities and courses of action. These are not adventure books, but rather social commentaries for our own time contained within futuristic settings where individuals from wildly different cultures, body types, and evolutionary pathways interact with each other. Good stuff for those who relish that type of book.

Have a great week, everyone!

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

The Saturday Update: Week 16, 2021

What a week it has been! I managed to get to 4 medical appointments on 4 different days which used up a lot of my available energy and time, but now that I’m vaccinated I have turned the Blue-Lipped Zebra loose again and it is absolutely determined to get to the bottom of what is going on! (What is going on, you ask? Check out these posts from the BLZ before it went quiet in lockdown: The Blue-Lipped Zebra Report! and The Blue-Lipped Zebra Goes on Oxygen.) This week I met my new pulmonologist, got some lung testing, saw the orthopedist, and started physical therapy for my hip. Whew. It was a rough week with lots of exhausting recoveries but also some great knitting action. Anyway, the BLZ is getting ready for some blogging updates and hopes to share what’s up soon.

In the meantime, here’s all the great stuff that was going on this week:

Knitting

Right after the start of the year I lost control and cast on lots of projects. You know, if you cast them on you have to do them, right? My head was just swimming with ideas and I want to make sure that everything was captured in yarn right away before I was distracted by the latest great potential project on Ravelry. A very dangerous place for people with huge yarn stashes, Ravelry… I’ve been steadily working on all of the projects depending on my mood and interests for weeks; this week several projects finished up at once.

My Goldwing is finished!! We had several rounds of snow over the last two weeks so I buckled down and knitted myself right off of sleeve island in just a few days to get to the final wearable product. There I am wearing it on its first outing to my pulmonologist’s office. Hey, they left me alone in a room with a full length mirror on the door with my new sweater? How could I let an opportunity like that slide by? I made some minor alterations to the pattern as I worked so that the sleeves and the body would be almost the same length and also used a smaller needle then the pattern called for in the sleeve colorwork because I wanted the sleeves to be wrist huggers. The end result was the perfect project to wear on a snowy drive across town. Here’s my notes on Ravelry.

This shawl is Age of Gold by Joji Locatelli; a simple garter stitch shawl that is easy to knit, has good coverage, and sports a showy lace edging. I *loved* this yarn when I bought it, but fell out of love while working on it sometime in February. Ugh. Light blue. What was I thinking. Maybe I was struggling with cold-induced depression, but I was not motivated to work on it at all. Then I realized a couple of weeks ago that it is exactly the color that my grandniece loves, took it back out, and got it finished off to gift to someone who will give it a great home.

The first mitt is done of the Mando mitt set. I’m making these for my exceptionally knitworthy niece who loves The Mandolorian. Of course, in my family I was immediately informed that the little green guy is named Grogew; the left hand mitt does feature Mando. Since I am mailing the shawl to California to my grandniece and think I should get these mitts done and mailed off to her mother in the same box, don’t you?! These mitts have been pretty darn challenging and I plan to post more about the journey later on when I get the second mitt done.

In the middle of the week my favorite LYS posted a message about having all of the assigned pooling yarns in stock. What is this, I wondered and went to Chasing Rabbits Fiber Co. to check it out. Oh, this is knitting designed to make use of skeins that are mostly one color with a section of another color inserted into it that is about 1/4 of the length or so. Chasing Rabbits is developing patterns to make use of the yarn with clever treatments of the color sections that are intriguing; in short, there is a specific stitch or treatment assigned to the short color strip. Here I was knitting some socks with yarn like that from Chasing Rabbits that were… boring and unimaginative (picture on the right). I ripped my sock out and reknit it with an assigned pooling idea that I would purl the colored sections and leave the grey knitted. The other idea that I had was to do something to force the color sections of knitted fabric to be more random so I threw in random PSS stitches to add some fun and change the length of the color sections. I learned the PSS stitch while knitting The Sharon Show in the section called “Catnip Garden” so these are obviously the Rainbow Catnip Garden socks. I’m thinking of using a bright pink yarn for the heels and toes so I can make two pairs of these!!

Gardening

Things are stalled outside because of the never-ending march of snow storms, but all is well inside. My orchids are in a second bloom that is making things really cheerful in the craft room.

The photo on the far right is of my monster orchid last year as CosmicKnitter asked me to show my orchid set-up and this picture did a good job of it. I like to keep the orchids in pots that “breathe” like unfired clay; I prefer the ones with holes in them but they are getting hard to find. It is dry here in Colorado so I keep water below the orchids with the pots suspended above the water on pebbles if the tray isn’t already designed with channels that keep the pot above the water. Anyway, the orchids seem to like the extra humidity and they are putting out more blooms this spring.

Books

I put off writing this post for a day hoping that I would get to the end of the book that I’m currently listening to while I knit: Hamnet. I still have three hours to go so I’m not there yet… but this is quite the book so I’m going to talk about it now anyway.

We learn right away that this is a book about a young boy, an only son, named Hamnet, who dies of the plague. Two years later his father writes a play called Hamlet.

So this is a book about Shakespeare and his family. Oh, that can’t be all that intimidating to write, right? I mean… Shakespeare. Did you every wonder what type of environment produced the man who had such an impact in his field and on his actual language that hundreds of years later we still celebrate his work?

I mean, if you write about this you need to make it kind of believable, and this book does that for me. It is mostly about Shakespeare’s wife, a gifted misfit with an eerie insight into the natural world, people, and the environments around her. The language is rich and descriptive, the story slow in the enfolding, and the events cling to me through my day. Shakespeare wasn’t alone in his extreme giftedness; at the heart of it was his wife Agnes and his children who provided the essential context to his life. Through chance these two found each other and the rest is quite literally history. Shakespeare’s wasn’t an easy life; he did not have a happy childhood and was basically viewed as a failure by traditional standards until he found his niche in London. How hard it is for those among us who view the world through a different colored lens and hear the sounds of music that no one else notices: this is Agnes and her husband. These people, some of whom were in my classroom or even my coworkers, can be viewed as “slow”, “underachievers”, or “at-risk” when the actual truth is they are processing information and viewing the world much deeper than we are. They don’t respond well to the usual pressures and deadlines, but what they produce when they are ready to show their work can be remarkable. The author captures this so well in the book; misfits and geniuses, aware of everything, and yet, oblivious to the obvious. Agnes and her husband.

The world in this book, so far from us in time, is also strangely familiar as international travel and the trade in goods has brought a deadly disease to Stratford on Avon. Shakespeare is hard to locate when illness breaks out because the theaters in London are shut down for plague season and they have taken the show on the road. There are strict rules about burial because… plague. The doctor wears a… mask. There are misunderstandings and lots of misinformation including bogus cures (as in… use this toad).

Well, that’s it. I need to finish the book because it continues to haunt me. Maybe I can get that second Mando mitt started while listening to it this evening.

Have a great week, everyone!

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

PS: I got my degree in biology. I am a biogeek!! Please forgive me it I botched anything about Shakespeare…