The Saturday Update: Weeks 35 and 36, 2021

The heat is hanging on and the cats and I are totally over it at this point. Yesterday we set a new heat record in my state: 99 degrees Fahrenheit. The sun is a sullen red ball in the sky and the sky is slate white with smoke from the west. The heat is unrelenting, there has been almost no rain, and fire season is still going on, and on, and on… Should summer be ending soon?

“Not yet!”, say the plants and wildlife in the yard. The cats have been busy chasing late season houseflies and the trees are abuzz with pulsing cicada sounds. There seems to be wildlife everywhere all of a sudden as the lawn and garden recover from the intense sun (but not the heat) of July and August. I even had to chase a little garter snake out of my garage yesterday! Summer is being especially tenacious, but I am seeing some hints of fall as flocks of geese fly over my house and the first leaves on the trees are turning.

The baby bunny is now hanging out in the front yard entertaining the cats as they watch from the front door. Do you see all of that debris on the sidewalk and street in the picture of the bunny? That is the mess being left by the squirrels as they harvest the Russian olives off of my neighbor’s tree. There is a really cute squirrel with an exceptionally fluffy tail digging holes under my trees to stash food for later… not nice, little squirrel!! Speaking of fluffy tails, look at what is happening to Mateo’s tail!! This kitten is getting a lot fluffier than I thought he would…

Garden

Everything that is pink is just flourishing at the moment.

My Autumn Joy Stonecrop is just covered with bees and other plants in containers on the deck have decided that they want to bloom too. Even the roses by my driveway have decided to get a last bloom in. For some crazy reason it is all of the pink plants… even the hydrangea is putting out some new blooms with pink edges. It makes me happy to see all that color coming back even if it will be drowned out by all the fall colors in the trees and shrubs in a week or two.

Knitting

I had several quiet days following my right heart catherization procedure last week (okay, I also slept a couple of days afterwards) and I ripped right through the next clue on the Snark-O-Meter. If you haven’t been keeping up with all of the snark, the Snark-O-Meter is the latest MKAL shawl by Sharon from Security (Casapinka) and I am having a blast this time.

It is getting too big to show off the fun stitches in this project in one picture so I settled for shots of each clue. The top left is clues 1 and 2, the bottom left shows clue 3, and the picture on the right is clue 4. Look at all of those great and interesting stitches and use of color!! I’m going to get a ton of use out of this shawl.

Since I finished the shawl in just a couple of days after the clue was released, and because Sharon is taking a week off to let people catch up on their knitting, and since I was admiring all things pink in the garden, I pulled out my new Rock It Tee that is being knit in a pinky/rusty colorway called Cinnasizzle. The actual yarn isn’t quite as hot pink as it appears in the pictures, but it is full of clay, pink, and rust colors that are just too fun to ignore. I’ve been binge watching Billions on Amazon Prime and knitting like crazy this last week with a nebulous thought that if I really apply myself I can get this sweater done before Sharon releases the next Snark-O-Meter clue in another week. Ha! This is clearly impossible, but that never stopped me before! To try is all. I’m below the armholes now and it is just knitting in the round for the next 15 inches or so…

Mateo is now 5 and a half months old. Isn’t he getting handsome?

I’m still waiting for my cardiologist to contact me with the next steps in the ongoing Blue-Lipped Zebra project. Things are really slammed right now in the health field as there are lots of Covid-19 patients and Covid long-haulers who need help, and my cardiologist is pretty overwhelmed with the case load at the moment. (How do I know? My pulmonologist, who is also slammed, told me. I feel so bad for them.) It is a little hard to be patient and to wait my turn, especially since some of those people who are bumping me back in the health-care line are the unvaccinated.

Last week I was mocked in public by someone for wearing a mask. Umm… retired high school teacher here. I called him out on it and he immediately stopped.

But still, it’s a little shocking that it even happened.

This is the 20th anniversary of 9/11. What a sad, horrible day that led to unpredictable outcomes that were far beyond my imagination at that time. How sad it is to reflect on all that has happened, and continues to happen, in America.

I plan to knit my way though the reflection, waiting, and sadness this week. You all be safe out there!

Have a great week everyone.

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

The Scleroderma Chronicles: A Trip to the Cath Lab

The BLZ has been waiting a long time for this…

Five years ago I came down with the flu and ended up in Urgent Care struggling to breathe. I scored some antibiotics, steroids, and cough medicine. To fight the virus I was told to go off my immunosuppressant drugs for a few weeks until I got better, stay in bed, and load up on chicken soup: it took a couple of months but eventually I got back on my meds. Except… things weren’t quite right. I panted for air every time I came up the stairs and I noticed that my lips were turning blue. My blood pressure was too low and I had to stop taking my hypertension medicine. I felt dizzy and light headed sometimes.

I was a newly diagnosed systemic sclerosis patient and my doctors began running tests to see if my disease was impacting my lungs. Nope. Not my lungs. Tests were run to see if scleroderma was attacking my heart. Nope: my heart seemed to be normal. There were some anomalies, but my doctors decided to just monitor me through routine testing and see if things changed down the road. My red blood cell counts were way too high, and I had nocturnal hypoxia, so I was started on overnight oxygen. I was tested for various conditions that could account for the weird test results, but I always had a normal result.

I struggled on, battling for more testing, as my doctors kept reassuring me that I was okay. Hey, I had a blue face and panted for air when I climbed stairs; vacuuming could put me on the floor. How could this be “normal”? Ugh. Welcome to scleroderma, I thought.

I began to think of myself as the Blue-Lipped Zebra (BLZ). If I didn’t have a rare disease confusing the issue I would be getting better health care, it seemed. If doctors didn’t tend to apply most-common-cause thinking to my condition they might get to the bottom of things faster. It was, in my mind, a huge complicated mess as my doctors applied best practice (and rigid) diagnostic parameters to my symptoms or zeroed in on specific complications of my scleroderma and ignored other possible (and to be fair, rare) causes for my symptoms. I worried that my doctors had just parked me in a holding pattern as I slowly got worse; it is hard to advocate for yourself when you are sick and dependent on your doctors for help, even if you think that they are dismissive and borderline disparaging.

I struggled on as my face became more blue, my red blood cell count higher, my panting for air more common, and the occasional near-fainting event left me collapsed on the floor. I began to ask for a right heart catherization procedure to directly measure the pressure in the right side of my heart. “Oh. You don’t want that,” I was told. “That is really invasive testing.” Umm… I think I do, I would reply. Nope. Nope, nope, nope!! “Not even on the table,” one pulmonologist said.

During lockdown last year I got much worse; ironically lockdown also gave me the opportunity to reboot, fire my old doctors and acquire new ones. My new team of doctors this spring ordered up testing that showed definite issues with my heart and lungs. I am now a heart failure patient (the wall of my left ventricle are too stiff and scarred to beat well) and there were concerning findings that suggested that I had developed pulmonary arterial hypertension (PAH): there are areas of cell death in my lungs and my pulmonary artery is too big. There is too much fluid around my heart, a suggestion of ongoing inflammation. I have a hole in my heart between the atriums (a cardiac shunt) that is impacting blood flow. I was gently prepared for the PAH diagnosis, assured that there were great drugs that could help me, and a right heart catherization was ordered by my new cardiologist.

Yay!! About time!!!

Finally, after 5 years of struggle, I was yesterday wheeled into a procedure room to a waiting team of specialists who hooked me up to equipment and took me though testing to get a better look at my heart: I learned in recovery that this team calls themselves “the pit crew”, and that is exactly what it was like. Within 5 minutes I had completed a breathing test, was on oxygen, wired up to a heart monitor, hooked up to an IV, medicated, prepared with surgical drapes, and swathed in warm blankets with a heater by my feet. There was music playing and the crew was cracking jokes as they darted in and out from the table getting me ready. I was knocked out for the echocardiogram imaging of the back of my heart that was done using a probe in my esophagus, but they woke me up for the main event: the right heart catherization. My cardiologist inserted a probe into the carotid vein in my neck and threaded it into my heart by way of the superior vena cava (blue side of the heart diagram above). People, this was the most amazing experience ever! There was a huge screen showing the progress of the probe and I could watch and ask questions as the line snaked through my heart; there was absolutely no pain. “Well, this is interesting,” said my cardiologist at one point, and there were more measurements happening and a flurry of new activity from the team. The BLZ felt a surge of elation: they had found something, and it was NOT what they expected.

Back in recovery my cardiologist caught up with me again. I had done great, he said, and he just beamed as he told me that I absolutely did not have PAH. This is great news, he assured me, great news!! There is another circulation problem in the lower part of my heart, between the ventricles. There is blood coming in from the left side of my heart and mixing with the blood on the right, disrupting the flow through the heart and robbing me of oxygen to my body. I have a second, more serious, cardiac shunt, and now it is a question of locating that pesky little guy and doing something to fix the problem.

It has been FIVE YEARS, people. If I hadn’t had my trip into the cath lab yesterday my doctors would still be nagging me to get more exercise (the BLZ just barks in laughter), offering me antidepressants, or insisting that I must have sleep apnea. I feel so validated!

My cardiologist is now going over my previous imaging to find the hole now that he knows what to look for. I was told that I may need to go through more testing to definitively characterize the opening, but this is huge forward progress. I suspect that I am facing open heart surgery down the road, but I am elated that the progressive and eventually fatal diagnosis of PAH is now off the table. Things are looking up since my heart failure will now be much easier to treat.

I am reminded of Elizabeth Zimmerman’s admonishment: “Knit on with confidence and hope, through all crisis.” Also, when the going gets tough, get a kitten!

Today I am waiting to hear back from my cardiologist who is going to email me with follow up instructions after he has finished going through the data and past test results. I’m on oxygen, knitting, and feeling pretty calm about all the new developments.

Almost exactly 7 years ago (August 28th was the anniversary day) I was diagnosed with Limited Systemic Sclerosis and Sjogren’s Disease. I have learned a lot along the way, but the best, most important lessons have been about self-advocacy, facing down the worst case scenarios, communicating with your doctors, and maintaining a good attitude.

Yesterday this all paid off for me big time.

Note: The fabulous BLZ graphic was made for me by my exceptionally knitworthy niece Melissa and her beautiful and talented daughter Eleanor.

The Saturday Update: Weeks 33 and 34, 2021

The end of August, and things are still hot here. The lawn struggles in the heat and the cats go to ground in the coolest parts of the house during the day. The smoke is gone, however, and I’ve been going out in the evenings to water and do some yard work almost every day. Someday, soon, autumn will come, but so far it doesn’t seem to be in much of a hurry…

The kitten is 5 months old today!! He and Hannah are pretty inseparable now.
Except in the worst heat of the day. Then it is every cat for themselves around here.

Covid-19 has exploded in the US over the last few weeks, mostly the Delta strain of the virus. I have always been careful since there was some concern that the vaccine wouldn’t give me good protection because of one of the drugs that I take to control my systemic sclerosis; now I rarely leave the house and when I do walk into a store I am double masked. Since I am hanging out at home I’ve been on a “one little thing” cleaning campaign that is really rewarding in small ways. Each day I target one little project: wash the upstairs windows, clean out a drawer, weed out a flower bed, or sort and dispose of old stuff in the garage. I still have bins of teaching materials from my days in the classroom stored away… well, I used to. It was hard, but most of that is now gone. Every week my trash cans are stuffed full and things are nicer in the house. The Covid situation is bad outside my little home, but I am soothed by the gradual improvements that are happening in all of my drawers and rooms as the clutter and dirt disappears.

Every cloud has a silver lining, people!

Garden

My baby bunny is gone. Here he is in his last picture before he moved on the the larger world outside my back yard eating a dandelion leaf.

When the new fence was installed I was pretty sure that the bunny would find his way out of the yard as there were a couple of new gaps under the gates. I can see a new bunny-shaped gap under the new boards that sure looks like there has been some squeeze under the fence action; happy days little guy. The cats will miss you but it is good to move on to greener pastures (and not eating my lawn!!) as you grow up.

Knitting

I am deep in the world of the Sharon from Security (Casapinka) MKAL Snark-O-Meter. I knitted like crazy for several days to get my shawl through the first two clues.

I am through the first two clues (clue number 3 arrived this morning) and I am really happy with how things are going. My problem is that once I finished the clues I had some free time on my hands, so…

I cast on and started another shawl. I messed up the color sequence on this second one, so it has some major Sharon Snax going, but I love it anyway. Now my dilemma is whether to continue with shawl number 2 until I have caught up with the first one, or to charge ahead on the black and red version so I can see what the colors will look like. There is a change in needle size involved so I may keep going on #2 until I get to the lace section at the top that I can switch the needles between the two shawls.

I also feel like I need to knit a little cat, too. I’m cleaning a lot of shelves and I want some more knitted critters to fill in the gaps. 🙂

Quilting

It has been a long time coming, but now that I’m cleaning things up I decided to finish up a small quilting project that has been ignored for years. This quilt has been on the wall by my indoor garden but I was lazy and didn’t hand quilt the lettering in the blocks.

I hate hand quilting, but these little sections of lettering will look so much better when I am done!

There are several blocks on this quilt with different gardening themed images; each has a cute phrase that needs to be quilted to make it stand out right. Then maybe I will add some more quilting to the outer panels of the quilt. Ugh. I am doing a little bit every day as an extension of the “one little thing” campaign. Hopefully it will be done and back up on the wall before the cold weather arrives and I bring in the plants from outside for their winter indoors.

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 31 and 32, 2021

Life has been rushed. I created a lot of internal deadlines for myself and I have been rushing along every day trying to meet them. After weeks of waiting I finally got the installation date for my new fences; that meant that I needed to do some major yardwork to prepare for all that construction and hauling away of stuff. Whew. I handled it. My flower beds are cleaned up, plants are pruned, and my new fence and gate look great!

The bunny survived the invasion of fence-related chaos and is back to entertaining the cats every evening and morning.

Sharon from Security (Casapinka’s very snarky cat) released her latest pattern last Saturday. I decided that I need to get my current knitting project finished before the first clue dropped.

I started a new series of books that I needed to finish up quickly so that I could get other books, checked out electronically from my library and getting ready to vanish into the ether in two weeks, read on time.

I’m doing major cleaning and dragging bags of stuff out to the trash every week. That trash pick-up day is another deadline every week as I clean out drawers and closets and let old belongings, not used in at least a decade, head off to a new home or the land fill…

Whew. Busy times!

Garden

The gardens are kind of bare of blooms right now, but the potted flowers are flourishing.
My bougainvillea is blooming like crazy!! By the way, can you see the pretty new fence in the background?

I am putting my energies now into moving and installing some new bricks and then planting several of the potted shrubs (like the mini-roses and my hydrangea) into the ground before winter. Next year they can bloom in the cleared garden in the background!

Knitting

It was quite the drive, but I did get my new sweater finished with a few hours to spare before the Snark-O-Meter from Sharon from Security (Casapinka) dropped.

This is my second little layering piece that is knit loose enough for summer wear (well, cooler summer wear) and then will serve as layering pieces in the fall and winter. This loose little V-neck top, The Rock It is just perfect!!

Well, let’s talk about Snark-O-Meter. I have been dreaming about colors and digging in the stash for weeks. I would decide on a combo, but then the next morning I would remember a different skein of yarn in the stash and the amended quartet of yarn would suddenly become my new favorite. I finally settled on a color combo that I know will go with almost everything that I wear.

I know, I know… it is conservative, but very wearable. Can you see that there are little flecks of black in the red yarn? The gray has a slight sheen from silk which makes the drape really nice and shines around the other colors. Snark-O-Meter is a mystery knit-along (MKAL) and the other knitters are already showing off their beautiful color combinations on Facebook. People are worried about being too slow, and others are asking for help from other knitters. Encouragement is everywhere, Sharon is shoveling out the snark while hunting for her stolen squad car (again?! Sharon, you need to take better care of your things…) and threatening to busticate knitters who don’t read the directions. I love this group!!!

I still have those other sets of yarn waiting to become something. I may cast on a second shawl in some crazy colors that I will also be able to wear. Also, they are colors that I just simply love!!

The last couple of years have been hard, to say the least. Some of the knitters in the Sharon Show group on Facebook have been giving away their extra sets of yarn to other knitters who are struggling right now. I look at my unused sets and wonder how many I can put together for the next MKAL. I’m going to bag the yarn and as soon as Sharon/Casapinka put together their next project I think that I should offer them up. Seriously, who better deserves my extra yarn then these supportive, cheerful, cat loving knitters. I wish I had thought of it sooner. I’m trying to clean out a lot of stuff… this is one way to do it.

Quilts

I really focused and worked steadily on a quilt that has been languishing for the last several months.

It is done! There was some help from the cats…

It is a huge relief to finally have this done. I cleaned up the sewing room and put everything away this weekend, and noticed that I have a really cute quilt kit just waiting for me to start it in the cupboard…

By the way, this quilt is an art quilt by Pine Needles called “Calling Me Home“. I used about half of the blocks in the entire quilt to make my wall hanging.

Books

I just raced through this series. The setting is hundreds of years in the future in England. There has been a terrible war, all the life has mutated dramatically in a race for survival and all the world is dangerous. People survive in small enclaves, their history and old skills lost, and the remaining technology is like magic to them. Because contact between surviving groups of people is restricted by the extreme hostile environment mankind is slowly fading away.

Koli is a young man who breaks the rules and gets banned from his small village. He begins a long journey with a thought of saving humanity; his companions are few, and not all of them are still alive. They face danger, fight battles, make choices, and in the end, reach their goals. It’s hard to convey, but the voices of the characters, their insight into the human condition, made this series extremely engaging. These people are primitive, but they are not unsophisticated. I love the books and raced right through them. 🙂

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 30, 2021

It was so hot this week! Today it is raining and we are under a watch for flash flooding. Bugs have descended on my garden and are munching on my flowers. The grass was in distress and the back yard bunny was no where to be seen in the heat of the day. I went to my cardiologist appointment in triple digit heat and Mateo went on his first trip to the vet for vaccinations and a check up.

Mateo: It was my 4th Month Birthday and all I got was a scary road trip and an ouchy shot in my arm and leg!

Poor Mateo has spent the last two days hanging out on the bookshelf sleeping off the effects of his vaccinations and while he has run around chasing Hannah in the wee hours of the morning (did you notice the time on that clock in the picture on the left? That’s prime kitten run around time!), mostly they have just been trying to stay cool and sleeping all day. At 4 months old Mateo is already half of Hannah’s weight and he looks about half her size too. I’m pretty sure that he is going to be bigger than her when he finishes growing.

Knitting

I’ve been making steady progress on the Rock It Tee that I am knitting, but it is pretty boring to look at right now. Basically, it looks just the same as it did a week ago but a little longer. How about some socks?

I finished my assigned pooling socks using some Chasing Rabbits yarn from the stash with hot pink yarn for the toes and heels. I just purled the yarn when I came to the rainbow sections and threw in some random texture stitches (PSS) that I learned how to do while I was knitting The Sharon Show shawl last year. The section of the shawl where the stitches appeared was #21, the Catnip Garden, so obviously these are the Rainbow Catnip Garden socks. I just found some more Chasing Rabbit sock yarn that will work for assigned pooling. Yay! I’m down to only one knitting project at the moment so it is time to cast on more socks.

Except… there is another Sharon from Security MKAL coming up in a couple of weeks and I just bought the pattern and have been diving into the stash to find possible yarns to use (I’ve have recently learned that shopping the stash is actually to be referred to as “stash surfing” in Sharon land. I love this community of snarky, supportive, cat loving knitters. This new MKAL is the Snark-O-Meter and I can’t wait to get the first clue. I need 4 skeins of yarn to make this thing and here are the possible candidates right now:

I just love all of these! Should I go with the wild and crazy colors (far right) or play it more safe and knit the blue, gold and rust combination in the middle? Then there is the pink and purple combo… I love pink and purple!! In a perfect world I would be able to knit all of these, but I have a lot of sweater projects also lined up. So much yarn, so little time…

Garden

My grass in the back lawn is struggling in the heat but the backyard bunny is finding plenty to snack on. My roses made it through the heat better than the grass did: look at the pink bloom that appeared today! Some of the flowers in my front planters also died to I visited a garden center this week to pick up some on-sale annuals to spruce things up. I got the pink snapdragons cheap and they are a nice color to go with all of the volunteer snapdragons that are already appearing in my front gardens. All of a sudden snapdragons are a big fave with me.

Books

I was all over the place with my reading this week as I started two different audible books and continued reading a couple of science fiction books. Nothing is done and I’m sure not wanting to talk about them at the moment. Somehow these books actually go together, but I haven’t figured it all out yet.

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 29, 2021

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.

Garden

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.

Knitting

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.

Books

I finished this in just a few days!

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 Scleroderma Chronicles: Matters of the Heart

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

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

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

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

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

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

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

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

Mateo: Very smart!!

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

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

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

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

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

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

And remember to be brave.

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

Zebras are brave!!

The Saturday Update: Week 28, 2021

The weekend was busy and I am running late, but there is so much going on I thought that I should get my update entry out there so that next week’s edition doesn’t grow to completely unmanageable proportions. It’s a plan, anyway.

I had appointments every single day last week, and two on Friday. I ran lots of errands while out of the house and by the time the weekend arrived I needed to do a little recovery. So what all happened? I bought a new refrigerator (!), made the arrangements for new fencing and a gate into my back yard along the side of the house, went to physical therapy, and met with my primary care physician. Whew! The Blue Lipped Zebra needs to write an update, but that’s another post. I also took Hannah in to visit the vet and get caught up on all of her shots.

Hannah: I don’t like adventures!

Hannah was so good at the vet. She took her shots like a champ and purred while they drew blood to test her for FIV. I insisted that I needed to stay with her during the blood draw and we got through it all with the minimum of upset for my girl. Whew! Then the pain and stiffness arrived. She growled if I tried to pick her up and wouldn’t even put weight on her front (vaccinated) paw for two days. Mateo, fully loaded with kitten energy and dying to rough house with his big sister, had to be distracted all weekend as Hannah hid out recovering from her vaccination reactions. Today Hannah is back up and the two cats are again chasing each other. Yay! Mateo goes for his shots next week…

Hannah wasn’t too sore to miss watching her baby bunny every day through the garden window. Mateo hung out with her when he was sleepy and is turning out to be the best little Hannah-companion ever. Except I’m pretty sure that he is going to be a lot bigger then Hannah when he is done growing!

Knitting

I finished Ranunculus!!

I am so, so, so happy with the final project!!

This is a pattern that is shockingly easy to modify and the pattern overtly support this. I tried to record what I did in my Ravelry notes as I’m pretty sure that I will be making another one of these. I’m exceptionally happy with the edging that I used on the bottom of the sweater and on the sleeves. I had cast off the sleeves while knitting (following the directions) and then decided that I wanted a better behaved edging that wouldn’t roll up my arm. I considered knitting Icord, but ended up stealing using the edging from a previous sweater, Misurina. I picked up stitches along the bound off sleeve edge and immediately launched into the edging: twisted stitch ribbing and then three rounds of stockinette before binding off to create the neatly rolled edging. The edging on the sleeve is stable and well behaved. I knitted a matching edging along the bottom of the sweater with a few more rows of the ribbing. Pretty awesome little sweater, don’t you think?

Today I wound the yarn to cast on my next little summer sweater. I’m getting into these little layering pieces that I can use on cooler summer days now and layered over long sleeved tops and under cardigans in the winter.

Garden

The weather has been exceptionally kind to the garden and the roses are just now starting to bust out with their second blooming of the season. This is kind of early and means that I may get a third blooming before the first hard freeze of the fall. I’m so pleased with the gardens in general. I always plant little bedding flowers hoping that they will reseed to create more plants in the coming years, but it doesn’t always work out for me. Except this year! I had planted miniature snapdragons two years ago that put out a couple of little volunteers last year that I took good care of. This year the garden, soaked every few days with another rainstorm, produced dozens of new snapdragons. Okay, these plants are all over the place and not just in the garden, but I’m going with Mother Nature and taking good care of them because I am now just plain charmed by the abundance of color.

The original snapdragons were a light orange/pink in color, but the second generation of offspring are in a whole range of colors from yellow to hot pink with all the shades of orange in between.

I pruned the roses in front last week and gave the plants a good feeding so there should be new growth coming in the days ahead. The roses in the back, fed a couple of weeks ago, are already blooming again. Stay away from the rose, baby bunny, you hear me?!

Books

I spent a lot of time reading this weekend recovering from the adventures out of the house last week (and protecting poor Hannah from the wild kitten!). I finished The Starless Sea, blazed right through The Last Thing He Told Me, and then jumped into The Ten Thousand Doors of January.

The Starless Sea is a rich, complicated book with multiple story threads that slowly emerge from other related stories. It relies on metaphors and imagination an awful lot, and I would have quit on it more than once expect for… it was so well written that I kept wanting to memorize little phrases to keep them with me always, or maybe rip out some pages to fold into little stars to hang somewhere, or buy some clothes with bees on them, or go dig through the pantry to find some clover honey… Truthfully, the author almost killed the book with her endless creativity, but in the end the story lines pulled together, things almost made sense, and I stayed up way too late to get to the end. I liked the end. Then I went online to look for some bee jewelry, but then I am a sucker for bees and stories.

The Last Thing He Told Me rolled right along in a simple, well-constructed story that kept me completely entertained throughout. The twists and turns in the story’s plot were plausible and not obvious, the connections to the characters were perfect, and I quite frankly loved it. Perfect book to read following the brain-frying twists of The Starless Sea.

Then I picked up The Ten Thousand Doors of January. Hey, can you see how beautiful that cover is? It has hanging keys and doors: these are big elements of The Starless Sea. I’m only a few chapters in, but already I’m captured by the story…

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 27, 2021

May I present to you Mateo the CoalBear.

He’s a matte black fluffy ball of cuteness that comes to life at night. I wanted to call him Bear, but that is too doggy-like. Coal is so… obvious. Therefore he is a CoalBear.

Mateo is a really laid back kitten with a cute trill, a peeping meow, and a big purr. He is eating his kitten food like a bottomless pit, ignores the plants, is not at all interested in my knitting, uses the scratching posts like a good boy, sleeps under the bed at night, and meows when he wants to be fed. Oh, and he loves Hannah.

In other words, he is perfect!!

The week has gone really well between the two felines. Hannah is now very attached to the kitten and calls for him to come play with her. They wrestle and chase each other endlessly with few problems. Each cat has zones where they can escape from the other and so far things are going smoothly, but I am still keeping part of the house closed off and kitten proofing-like crazy. Right now Hannah has the upper hand but the way the kitten is eating the tide will be turning soon.

Knitting

I’ve been steadily knitting along on my Ranunculus and it is now below my waist. I’m considering options for how to finish the bottom at this point as I knit. The pattern calls for several inches of ribbing, but I want to continue the stockinette until the last couple of inches and then maybe add I-cord or a combination of twisted rib and then a few rows of stockinette to create a clean rolled edge. The sleeves were bound off earlier but I may cast on and replicate the finish on the bottom. I-cord will be easy, but I kind of like the idea of twisted ribbing…

This pattern is very adaptable and easy to knit. I am knitting with fingering yarn on size 8 needles and have chosen the smaller neck opening and short sleeved options.

Garden

Things are looking good in the garden this week! I still have the baby bunny and he is slowly cleaning me out of dandelions. Yay!

Books

I have totally gone down the rabbit hole with this book!

This is a book that makes you think of a lot of other books while you are chasing stories that seem to be interconnected to other stories that are books inside of books. I love this book, but I am still hoping to understand what it going on. There are keys, swords, bees, characters who knit, magic, and stories that are kind of magical. There are lots of doors to open and pass through to get to the stories, and of course there are books, books, books! I want to highlight lines in this book and hunt down other people to talk about it with. Lucky for me my niece in California (that knitworthy one!) is also reading the book.

Did I mention that some of the characters are knitters? And that the first line in the book is… “There is a pirate in the basement.” I keep remembering little snippets of The Princess Bride, and the Harry Potter books, and The Game of Thrones books as I read. I want a necklace with a little bee on it… and a key… but I want a star instead of the sword. I’m having fun with the book and it certainly is enchanting to read.

Have a great week everyone.

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

Free Range Kitten

So, I was getting a little concerned with how things were going yesterday morning. For two days I had the kitten locked up in the spare bedroom with me going back and forth between the two cats trying to calm Hannah and trying to entice the kitten out to eat and play. It was not going well.

The kitten, his nose kind of running, was holed up under the loveseat and refusing to come out until late in the evening.

Hannah kept calling to me the whole time I was in the kitten room and it was hard to reassure her through the door. I was worried about the kitten getting too warm packed under the loveseat. Hannah kept growling whenever she caught a whiff of kitten scent. Not good. I was a little worried that maybe I had made a mistake: Hannah was too bonded to me to allow a kitten into the house.

I woke up yesterday morning thinking about getting a screen door cheap to use in the doorway: the room was too hot and Hannah needed to see the kitten. Then I decided to remove a window screen and to use that across the bottom of the door into the kitten room while blocking the upper half of the doorway with an old poster left over from my teaching days. Hey, it just had to hold together for a day or two.

Ta-daa! Hannah can watch the kitten while I interact with it and the open door will make the room cooler.
Hannah watching me feed and play with the kitten inside the room early in the evening.

Okay, I had to actually lift one side of the loveseat to get the kitten to come out, but once I did that he was hungry, friendly, and used his cat box like a good boy. Hannah watch all of that through the screen.

Eventually, after playing with everything in the room, the kitten finally discovered Hannah. Oh. Do you want to be my friend?

Hannah wasn’t snarling and carrying on, the kitten wanted to get out of the room, and I was tired of the whole operation, so around the time that the fireworks outside were getting really loud and my nerves were fraying around the edges, I removed the screen.

Wow. The kitten explored the whole house with Hannah following along and emitting the occasional hiss/growl. Eventually the kitten became interested in Hannah and the great play event erupted downstairs as Hannah and the kitten chased each other for over an hour. The kitten ate another dinner and… Hannah had a cow when the kitten ate some of her food. Major eruption of growling. She doesn’t care for me petting the kitten all that much, either, but even though she voiced her objections, she didn’t attack the kitten. Whew. The fireworks were slowly ending outside and we didn’t have any significant ones inside. It’s a win!

Hannah and her kitten on the cat tree this morning.
The kitten this evening snoozing at the end of the bed while I type this.

I feel like we are over the hump, people, and I have successfully integrated the kitten into the house. Today Hannah is more like her old self and I am being really careful to maintain all of her routines. The kitten has eaten several more times from Hannah’s food bowl and she is handling it better. Have I offered the kitten any cookies yet? No, I have not! Maybe in another week or so Hannah will be able to handle the idea of the kitten eating some of her cookies. Maybe…

Hannah: Sigh.

I have to mention that the reason that I decided to get the kitten was that Hannah seemed desperate for a playmate. She cried all day long for me to come play with her laser light or to throw toys for her. She hid in her papers to ambush me as I walked past and just plain seemed a little desperate for companionship.

It has been an exhaustingly long 4 days, but this afternoon I heard Hannah calling for me to come play with her downstairs…

and the kitten went instead…

and I heard them playing together.

Good job, Kitten Mom. Good job!!