Month’s End Report: July, 2022

July was quite the month! A lot of it was hot, really hot. I felt great for a part of the month due to a drug-induced power surge that carried me through lots of landscaping in the back yard. I read two books that were just exhausting. I went crazy for color and bought more yarn. I cooked, sewed, knitted and planted lots and lots of new plants in my gardens. A great month, July!

Today I drank my morning latte out on the deck and thought about everything that got done last month. There were new birds in the yard (blue jays!) and a small flight of honking geese flew over me as did my watering. Most of the baby bunnies have moved on, and the butterflies of July are gone. The flowering plants are recovering after a short break in the heat last week and I look forward to the late summer blooms. It is now August, but I can sense the looming presence of autumn just over the horizon.

In the yard this morning: a just bathed robin fluffed out and drying on the fence, the very first hydrangea bloom on my shrub, and a woodpecker (!) stabbing for insects in my freshly watered lawn.

So this was the month:

I finished my Salty Air Tee! It used exactly 2 skeins of sock yarn and is just perfect to wear now and will be great for layering later. I am now a fan of I-cord bind offs and used them on the sleeve and at the bottom of the body. The neckline was a little loose, so I picked up stitches along the cast on edge and put an I-cord BO around the neck, too! Perfect fix to a sloppy neck problem!
I finished a pair of socks!! This yarn, from Hue Loco, is in the Blast Off colorway. Perfect for the month!
I sewed a drawstring project bag, and then I spent some time on YouTube watching tutorials and learned how to sew zipper pouches from my “Knitting Goddess” fabric. I still have some of the fabric left over so I just ordered a pattern to make itty, bitty sewn boxes from it. 🙂

I read two books that were a handful. Black Leopard, Red Wolf is confusing, exhausting, and maybe the best book I have read this year. Think about the Lord of the Rings trilogy set in African antiquity, awash with magic and violence, and you would have this book. Hummingbird Salamander is a cliffhanging ecothriller that also chronicles the trainwreck of the main character along with the impending crash of the planet. Another good book, but one that I feel went too far down the climate change rabbit hole. Neither one of these books is uplifting. Nope, not at all. Worthy reads, but not good entertainment on a blistering hot day.

That’s it. In July I used up 4.75 skeins of yarn. I knitted one chemo hat and 5 PICC line covers. I finished a sweater and a pair of socks. You already know about the books.

Crocheting with Hannah.

I have cast on several new projects, and I’m still feeling pretty ambitious and getting things done, but the prednisone party is definitely over. In my new, dialed down state, I’m slowly knitting on a new cat, crocheting squares for a still undefined purpose, and sending my loom some regular side-eye. The spinning wheel has been put back into a corner but I’m hoping to return to it when the weather cools. I’ve pulled out a quilt project and I need to head on over to YouTube again to learn how to paper piece…

Bring it on, August. I’m ready for you!

Hannah and the CoalBear: Hot Caturday!

Hi. I’m Hannah.

It is so hot I’m hanging out on the coffee table under the ceiling fan!

It is seriously, seriously hot! How hot, you ask? Well, check out the bunny out front…

Bunny: Ahh… here’s a cool patch of dirt!

And Mateo can hardly move in the heat of the day!

Seriously, he looks like he is melting!

Mateo and I kind of come back to life in the evenings when we head downstairs to watch the baby bunnies in the back window (it’s bunny o’clock then!) and in the late evenings, when the Mother of Cats moves upstairs to read before bed we move onto the bookshelf, up by the ceiling fan for the night.

Hannah: The Mother of Cats took this picture crooked, but you get the idea. I sleep on a shelf with books, and Mateo the wild boy sleeps up on the top shelf.

Well, guess who fell off the bookshelf at 3am this morning? Yep. That would be the wild boy, of course. I just looked over the side of the shelf to see if Mateo was okay, but the Mother of Cats had to track him down and fuss over him forever like he was still some type of baby or something. Whatever. Since everyone else was up I decided that I might as well get some cookies… then the Mother of Cats needed a glass of juice… then there was lots of tossing and turning that disturbed my sleep…

Now it is the day, and we are asleep again in the cool by the AC unit. All of the squirrels and bunnies are asleep too, and there aren’t even bees moving around outside. It’s only noon but it is already 95 degrees outside and the Mother of Cats is searching the sky in hopes of some thunderstorm clouds for this afternoon. She likes the rain, but the CoalBear doesn’t like the thunder at all!!

Mateo: thunder is bad!!

Isn’t Mateo (AKA the CoalBear) the silliest thing ever? All I care about is staying cool this hot afternoon…

and I am safely asleep by my favorite books waiting for evening to come.

Happy Caturday, everyone!

Note from the Mother of Cats: if you are currently in one of the places on the planet that is experiencing dangerous heat, I hope that you are safe and doing okay. Hugs to everyone under a high heat alert or experiencing wildfires. Stay safe!

The BioGeek Memoirs: Squirrel

Growing up as a little girl in Southern California I never saw many squirrels. They were this cute little animal that you might be able to see if you went up into the mountains. If you were lucky, you might be able to feed part of your lunch to a ground squirrel at a rest stop. They were rare, elusive, cute, and I absolutely, positively wanted to have one as a pet.

Look at the tail on this little guy who has been hanging out in my back yard!!

Then I moved to Colorado. Squirrels rule here!!! If you offer some food to a squirrel at a park you might get mobbed. Seriously, I had to once pick up a child and back away from the descending mob of squirrels after tossing out some scraps of bread. They are so cute, but best to not encourage them too much. They eat all the yummy food growing in gardens (ahem… strawberries and grapes… ), raid the trash, and aren’t above dragging off the dog’s Kong to get the treats inside. Bird feeders are actually squirrel feeders. These guys are so bright that it is almost impossible to keep them out of the feeders. There were some “squirrel proof” feeders at the local bird supply store, but I just laughed and bought a bird house. I love the squirrels, but I am not feeding them, because… previously mobbed by hungry squirrels…

Teenaged squirrels playing this spring on a garden chair.

Here where I live now there are squirrel nests in trees all around, and this last year a nest finally arrived in my front tree. It looks like a huge ball of leaves caught up in the branches; three cute little squirrel youngsters showed up this spring racing around the trunk, over the branches, and across the roof to my back yard where they access the fence which serves as the highway to all the other houses on my block. I call this Squirrel Route One, and the movement of little feet over the roof and the scrabble of squirrels along the fence are my morning entertainment every day while I’m outside on the deck drinking my morning latte. Why look at what has happened: I have pet squirrels after all!

The pictures show squirrels moving on Squirrel Route One: along the fence, then down into the yard to my deck, across the deck, and then a fast climb to the upper supports and a leap onto the roof. These squirrels aren’t above checking me out to see if I have some unsecured snacks. Nope, little guys. Move along!!

I do make sure that there is water for the squirrels, however.

There are several types of squirrels in Colorado, and these guys seem to be a type of tree squirrel called the fox squirrel. They provide endless entertainment for me and the cats and were great distractions (Squirrel!!!) for me as I recovered from surgery this spring. I used squirrels in my teaching; there was a white squirrel in a Denver park a few years ago, and I used the videotaped newscast about her in my biology classroom. That white squirrel wasn’t an albino as her eyes were dark, and her offspring were all normal in coloration. “What type of genetic mutation is this?” I would ask the class. (It’s recessive.) What would the Punnett square of the offspring look like? If two offspring mated (I know… icky… just go with it!) what would be the chance of another white squirrel? Is this a genetic feature that will be selected for? What if our weather changed and it was snowy all the time? The kids loved the white squirrel lesson. Well, they are so darn cute, what’s not to like?

Adult (not white) squirrel on my ash tree.

I’m not above having fun with squirrels and my neighbors. Squirrels can be enormous pests, and a few years ago they managed to work their way into my next-door neighbor’s attic where they went wild eating the wire insulation. Bad squirrels!! I printed out a recipe for squirrel pot pie and anonymously taped it to their front door. I know, I’m bad. They trapped those squirrels, repaired the roof, and I’m pretty sure that none of the squirrels became dinner. Pretty sure…

They got back by feeding the squirrels that remained lots and lots of peanuts in the shells that the squirrels buried all over my yard and in the gardens.

I gave them a little stuffed toy squirrel wearing baby booties when they had a new baby.

Squirrel wars!

That neighbor eventually moved away and just a couple of weeks ago she called me to catch up on all the neighborhood news. “I now have a squirrel nest!” I told her. They are living in a new housing area without mature trees now and there are no squirrels. They miss them.

Because squirrels are so darn cute!!

And they are favorites of watching cats everywhere!

The Scleroderma Chronicles: Unforeseen Circumstances and Unintended Consequences

I guess almost everyone in the world knows by now that the United States Supreme Court issued a ruling last month (June 24th) that overturned the constitutional right for a woman in the United States to seek an abortion at any time during the first two trimesters of pregnancy.

This post isn’t really about abortions, okay. This is about the unbelievable unintended consequences of that decision for women who are dealing with unforeseen circumstances. Women who are dealing with medical conditions that they never saw coming, and that they absolutely did not bring upon themselves.

Like autoimmune disease. Like cancer. Like any one of a number of medical conditions that require serious, high-risk medical interventions by the medical professionals who are treating that woman.

My first inkling that there might be a problem with the Supreme Court ruling that was much larger than what was being reported in the press happened the evening of June 29. A woman in one of my autoimmune online support groups posted that she saw a message from a doctor who had a patient reporting that she couldn’t get her methotrexate prescription renewed. I literally couldn’t sleep that night I was so upset. In the days that followed there were more reports, and this is really happening to some women. They are being denied refilling of their methotrexate prescriptions. This drug is a common one used to treat autoimmune diseases like rheumatoid arthritis, lupus, and scleroderma. It is a chemo drug, it can harm an unborn child, and it can also be used to induce an abortion. Here is an article on Health.com, another at msn Everyday Health, and this one from Time.com.

My morning pills.

There are some serious drugs there in my hand. The green pills, Myfortic, can harm an unborn child by causing birth defects or a miscarriage. I take 6 of those every day. The white capsule, omeprazole, should only be used “only if the benefit outweighs the risk to the fetus”. I have to take two of those each day. That little pink pill towards the upper left is the really big problem in my hand. That drug, ambrisentan, required a rigorous enrollment process with paperwork from my cardiologist and myself along with two interviews by pharmacists. I had to prove that I could not get pregnant to avoid taking a pregnancy test prior to each month’s supply of the drug being shipped to me. Even with all of that, I am screened each month before the next month’s supply is overnight express shipped to me. This drug poses a serious risk to a fetus. In my support groups for pulmonary hypertension there are women who are reporting that they are getting dropped from the programs that allow them to get the drug.

I’m okay because I’m beyond childbearing age. Many other women who are dealing with autoimmune diseases that require drugs such as these are of childbearing age. Why? Because the people in the population who are at the greatest risk of developing an autoimmune disease are women of childbearing age, that’s why. Because of the recent decision about access to abortion these women are also now at possible risk of being denied treatment for their autoimmune disease, or in the worse-case scenario, access to an abortion in consultation with their medical professionals.

I literally couldn’t sleep when I read the first reports of the problems with access to methotrexate in my online forums. This is absolutely unbelievable. This is unbearable. How could this be happening to a population of desperate woman, through no fault of their own, who are in this horrible situation? Right now, methotrexate is being targeted, but there are all these other drugs that are used for so many patients with so many conditions. Women, absolutely, are at risk of receiving inferior health care in the US.

This is awful. Have a rose. Right now, I need a rose. And a hug.

This is hitting me hard this evening because I have been dealing with autoimmune pneumonia since last December. My doctors are trying to get it under control with high dose immunosuppressants, but I am coming off one of them right now and I am struggling with shortness of breath and chest pain once again. I’m back on daytime oxygen and I’m feeling a little low. The lung biopsy was the first engagement with my interstitial lung disease, this current drug strategy the second battle, and the third battle is looming on the horizon. This isn’t a disease; it is a war. I never asked for this, and yet, here I am trapped in this unforeseen circumstance, engaged with an uncurable foe. Without the drugs in my hand above, I would already be gone. Yay, science!!

I think that there is another CT scan in my near future, and then there is a possibility that my doctors will move to the Plan B (see what I did there) that they have already discussed with me. Cyclophosphamide (a chemo drug) and OFEV (an anti-fibrotic drug) are on deck if my doctors decide to escalate my care. Both of these drugs can harm an unborn child. I will get access to these drugs. If I was in my 30s, as many other members of my support groups are, it might be a different story. What about women in other support groups that I don’t belong to who just got diagnosed with cancer or an equally serious disease who also need medical treatment with high-risk drugs such as these? Women of childbearing age. Women who may already have children who they need to think of and care for in their health care journey.

Being diagnosed with an autoimmune disease like the ones that I have (systemic sclerosis and Sjogren’s disease) is a punch to the gut. Being denied access to treatment because of your childbearing status is an unbearable second blow. Becoming pregnant while on one of these drugs would place a woman in an impossible situation. Nothing, NOTHING, about this situation is good. Where is the privacy for these women? Where are the HIPPA protections that they are entitled to? The decisions that these women face are absolutely heartbreaking, morally complicated, and ethically challenging. They deserve privacy as they make them along with their health care providers, religious advisors, and families.

This post isn’t about abortion, not really. This post is about unforeseen circumstances and unintended consequences.

I feel a lot better for having gotten this out.

Peace be with you all.

Take this rose with you as you go.

But if you decide to share this post, write a congressperson, join a march, or take some other action to ensure that women have equal access to health care, that would be great.

Down the Fiber Hole and Other Essential Updates.

If you have been keeping up with the adventures of Casa Hannah and the CoalBear you know that I have been feeling just freaking wonderful for the last two week and getting more done than at any time in the last two years. I’ve been planting lots of new plants and getting all the gardens into order (for the first time in years because… next door pit bull who has now left the scene… yay… adios, pit bull…), and dragging out lots of things to get working on that have been languishing for years. The garden is starting to produce some color with the perennials now which is awesome as I’m seeing hot pinks and purples. Lavender, bougainvillea, and sage. Perfect!

Um… and then the party came crashing to a halt a few days ago as I started weaning myself off prednisone (marvelous stuff, prednisone!) and I got a little dizzy, and I… fell off the stairs. I literally realized I was going to be airborne at the last second and managed to push off enough to twist around and land on my feet in the living room where I pretty much crashed landed into the couch. Sad outcome. Did you realize that you can actually bruise your lungs? Okay, my lungs are less than pristine, but still… my ribs aren’t too happy, either. There was some talk about my liver… I had to stay indoors over the weekend and go back onto daytime oxygen.

That, however, did not stop me from going down the fiber rabbit hole!!

I finished the first silk/yak roving from Greenwood Fiberworks and am ready to start on the second.

I’ve been considering how to attack the variegated roving. Should I separate the colors? Do pencil rovings down the length of the larger piece? Just take it off in strips and let the colors end up however? Still thinking about this one, but I am tending towards pencil rovings.

I made some really good progress on my Salty Air Tee.

I love, love, love the yarn that I am using for this sweater. Isn’t that the perfect color for summertime knitting? This pattern is racing right along and I’m racing to get it finished because… some new patterns dropped on Ravelry and I am dying to knit one of them.

This is the Lace & Fade Boxy by Joji Locatelli, and that first picture is swiped off the Ravelry page and has her copyright. I have four skeins of a dark grey fingering yarn with smoky/woody tones that I am dying to use for this sweater. My first idea is to knit the entire sweater in the main color (lace and all… ignore the fade, we don’t need no stinking fade because I have four skeins of this color…) and then go back and knit I-cord trim at the neck, bottom, and wrists in that really cool multi yarn. That will look awesome, right? On the other hand, if there is enough yarn, I can do the lace in a fade with the pink yarns. I only have just over 100 yards of each color, so that may not work, but it might look pretty cool. I really am tending towards doing the whole sweater in the solid fingering. I have knitted two boxy sweaters in the past (the Vneck version) and I know them to be comfy layering workhorses in cold weather.

Then there is the crocheting. I haven’t crocheted in years because of my dodgy wrists, but I loved this bag (Square Scramble Sack) on Ravelry so much I bought the Noro yarn a week ago. Like I need more yarn, right? I had to order the crochet hooks from Amazon and then I was off to YouTube to learn how to make the puff stitch… that first little square has too many puffs in it, but I felt pretty successful and I’m now making a few squares every day that I don’t fall off the stairs.

There are two more sweaters that I want to knit, but I’ve got them on the back burner at the moment because I’m so far down the fiber hole at the moment I am just focusing on working steadily on each project for a few hours each day. Or maybe every other day so I don’t wear out my hip (spinning) or wrists (crochet). So far I’m making progress and I’m recovering from the fall okay at the same time so all is good. Except… the days of prednisone wonder are coming to an end as I feel the energy and the good times fading away. I start the lowest dose tomorrow and after a week it will be over.

Still, if you look at all those pictures that I put into this post, the days of color continue. Yay! My gardens have been returned to some semblance of order, I am making good progress on a number of projects, and I also got some chores done.

Hannah: I was put into the carrier and then put into the car and then taken to the vet and then I got cat-handled and there were some shots and would you believe that the vet said that I was slightly pudgy

Seriously, PUDGY!!!

Hannah: Now I have to eat Indoor Cat food and the Mother of Cats has cut back on my cookies. Ugh.

That was my week. 🙂

You all watch out for those stairs!!!

Six Months Update and Days of Color

Okay, this is an update on my progress on my goals for the year, but it is also a celebration of how well I feel at the moment and my launch into several projects that are rocking the color right now. Seriously, I am so drawn to colors at the moment that I’m pretty much doing some silly impulse shopping. Who cares. I’m having a good time!!

You want to see the silly impulse shopping and/or pink things first?

I could not leave the local garden center without that pink flamingo for my garden! Hello, it glows in the dark with an LED body. 🙂 What do you think about my Knitting Goddess fabric? Yep. That was a late-night Etsy impulse purchase. I’m thinking that it will make a fabulous project bag. What do you think about that Noro yarn? That will become a crocheted tote bag… I also needed to buy some brightly colored hooks to make the bag, and there may have been another big ball of beautiful yarn that fell into the shopping crate before I checked out, but I’ll never talk about it. My feet are hurting because of the spinning I’m doing, so I had to get those wicked compression socks!!! Yep, I am a total sucker for pink. Well, raspberry pink to be specific, but I will settle for hot pink. Finally, Hannah kept trying to drag off my knitted finger protectors, so I made her and Mateo some little tube-like cat thingies to play with. They like them!

Speaking of color, look at my progress on the spinning for Tour de Fleece.

Can you see that I am making progress? The bobbin on the right is where I am today. I’m almost through the crocus-colored roving (50/50 yak/silk from Greenwood Fiberworks), then I get to start on the variegated roving. I’ve been watching episodes of Vera on BritBox while I spin so I’m actually coming to think of this Tour de Fleece as the Tour de Northumbia… I am happy with the spinning as I think that my drafting is getting easier and the thread that I’m spinning is getting smoother. It may also be slightly larger, but I can live with that!

I started reading this book this week because… look at that cover!!!

I don’t want to talk about this book yet because it really is remarkable, and I am changing my opinion about it as I go. It’s like entering a dream world and just experiencing the adventure without worrying too much about what’s going on. In time, I’m sure, I’ll understand what is happening. Maybe. I don’t care. I’m so entranced at the moment I’m reading a couple of hours a day during the heat of the day.

There is color in the garden, too. Look at this:

There is more color in the garden to replace the fading roses. My veronica is finally blooming, and I went back to the garden center to buy more lavender plants. I now have 11 lavenders in the garden… don’t you think that I should get another, so it is an even dozen? The pink yarrow is hard at work. Oh, yeah, there was also a garter snake in the garden today. Not a lot of color, but a ton of fun to see.

So, how much progress has occurred over the last 6 months?

  • I finished 30 hats and 28 PICC line covers in the first 6 months. I was hoping to get 50 of each done this year, so I am on track.
  • I have removed 76 skeins of yarn (100g of yarn = a skein) from the stash through knitting and donations. I hope to get 100 skeins out before the end of the year, so I am on track. I did just have a 6-skein slip, but I’m not worried.
  • The other knitting accomplishments are two sweaters and two pairs of socks.
  • I finished a quilt and got it hung up on the wall!
  • I learned how to double knit. Actually, I’m really stoked about how fun it was and I am looking forward to doing some cute projects. (I found that chart online and watched videos to figure out how to do this. Piece of cake, as it turns out!)
  • I have finished 32 books.

Well, that’s the progress report. My son helped me get my table loom set up for me to use and I’m dreaming of warping the floor loom before the end of the year. (Mateo: that sounds like fun!!) I’m wondering if I can weave something with the yarn that I am spinning now, and I’ve pulled out another quilt kit that has been languishing forever in a cupboard so that I can work on that in my sewing room. I’m entering the last few days on the full dose of prednisone; the dose will be tapered off and stopped over the next two weeks. While I was on prednisone my rheumatologist gradually stepped up my immunosuppressant to a final dose that is double what I was on previously. I feel really good right now and I have huge plans for the rest of the year.

Scleroderma, behave yourself!!

I’m on the Tour

The Tour de Fleece, that is. I’ve never joined the tour before, but this year I am feeling pretty good due to my current 6-week course of steroids (prednisone… if you’ve ever been on this drug, you know what I’m talking about… I feel great and have tons of energy) and my hip is feeling so much better I’m walking without my crutch and almost no limp.

If I was ever going to try to do some meaningful spinning, this is the time to do it!! The Tour de Fleece this year is from July 1st until July 24th. The idea is to watch the Tour de France while spinning along… kind of a fusion of spinning wheels, you know. I’ve joined Team Rookie since this is my first year on the Tour and it has been quite a while since I’ve done any serious spinning. This will be fun!

Here are my goals:

Goal One: spin the yak! I have two 4-ounce rovings from Greenwood Fiberworks that are 50/50 silk/yak. I started on the crocus colored roving about a year ago, and it has just been in limbo since then. The poor wheel has become dusty while it was sitting around with the little bit of spinning that I had accomplished last year parked on a spindle. I’ve decided to try to get both of these rovings spun up and then plied together… maybe. I can also go for 3 ply with some Navajo plying. I’m going to spin fine with an eye on a fingering weight final yarn.

I have been seriously intimidated by this fiber!

Goal Two: spin the paco-vicuna! The silk/yak is the warm-up for the main event. I have had this paco-vicuna (from an animal named Gulliver) for over 10 years, and because of the cost and the fine fiber I have been afraid to commit to spinning it. Well, I’m over it. If this will ever be spun, now is the time. My goal is for a two-ply fingering yarn for a lacy cowl or shawlette. I’m also thinking that a hat and mitts would be really nice.

Rose gold alpaca. Do you see how clean this fleece is?!

Goal Three: spin the alpaca! The fleece from an alpaca named Antonia, to be exact. I bought this rose grey alpaca fleece at the Estes Park Wool Market a few years ago. It’s a nice fleece. It didn’t win a ribbon, but when I found it in a vendor’s booth, I liked the color and texture so much I impulse bought it. It doesn’t have very much veggie matter in it, but the stable is a tiny bit on the short side so… no ribbon. Still, it should make a really nice yarn. I’m thinking that this should be a 2-ply sport to DK weight yarn. I’m not completely committed to working on this fleece, but if the spinning on the other two projects goes fairly quickly then I should have time to do some carding and spinning with this yummy alpaca.

I spun for 2 hours tonight, and my hip is still behaving itself. That’s a good sign. I also signed up with the team out of my local yarn store and I hope to go spin with them every Sunday morning while the tour is going on. This will be fun.

The Scleroderma Chronicles: World Scleroderma Day, 2022

Wow, it is that day of the year again. The Niagara Falls will turn teal, Scleroderma organizations around the world are sending out messages and videos, and patients with scleroderma like me are wondering how best to showcase our conditions in a meaningful way. Here in the US the theme is Know Scleroderma. In Australia it is Shine Like a Sunflower.

The whole idea is to educate the public about this rare disease that pretty much flies under the radar to help secure support for patients, funding for research, and awareness of treatment options. Patients are encouraged to tell their stories and to do what they can to expand scleroderma awareness in the public eye.

Well, shoot. I do that all the time! I wrote about World Scleroderma Day last year and I kind of like what I wrote. I talked about what was going on in my illness and the progress that I was making in getting diagnosed and treated for the significant organ damage that was underway in my lungs and heart. I also mentioned the similarities between Covid-19 and systemic sclerosis (the type of scleroderma that I have), and the fact that people like me are still dealing with lockdown. You can read that post here.

So, what has changed in the last year and why am I typing away on my computer once again about World Scleroderma Day? Well… awareness and support are the messages that I’ve been urged to put out, but I’ve been reflecting on what I’ve learned this year and how it might be useful to others. This was a huge year for me… I was diagnosed with pulmonary arterial hypertension, a complication of systemic sclerosis that is developed by about 15% of patients, and I was also diagnosed with interstitial lung disease, another complication of systemic sclerosis that is also developed by about 15% of patients. These serious complications develop so routinely around the 15% mark that there is now a rule of thumb about it in treating patients with systemic sclerosis. There are other conditions that fall into the 15% rule, and I have two more of them: Sjogren’s Disease and diastolic dysfunction.

MacKenzie and I from a posting a few years ago.

So, I am getting a lot of experience in dealing with being sick in a way that is not visible to the public and is not the first thing considered when you head into a doctor’s office seeking help for debilitating symptoms that have no obvious cause. I have been successful this year in becoming an active participant in my own health care and I love my team! Here are my lessons learned:

  1. Physicians tend to diagnose with the most common condition that matches your symptoms. You know, if you are struggling with fatigue, it must be depression or sleep apnea…
  2. They also tell you to stay off the internet.
  3. That works great up to a point. Get onto the internet!!!! Look up the symptoms and treatment options for the condition/illness that your physician is talking about. Do they really fit? Go ahead with the testing that your doctor orders but continue to educate yourself. Get the full text of any testing reports (those are your tests on your body, so do insist… nicely…) Look up crazy words that you don’t understand.
  4. I should include here…DON’T PANIC… about any crazy-ass, scary condition that you run into on the internet that you think you might have. I mean, what could happen? You already are sick, and you won’t get magically worse overnight once you get a name for it. You might, however, get some really helpful treatment that could turn things around for you. That is, if you have that crazy-ass, scary condition that you really, probably, don’t have. DON’T PANIC!!
  5. What if you get test results that say “you are fine” and your doctor pretty much is ready to stop there? Um… go right back to specific test results and symptoms to reset the conversation. You know, “my face is still blue, and the latest CT scan showed that I was losing tissue in my lungs. What other testing can we do to figure out what is going on?” is exactly where you should redirect the conversation.
  6. Make a list of your symptoms and track them in a journal or on a calendar. Document stuff and then contact your health care provider (email works great!) with your concerns and the symptoms that you are noticing. Specific data helps a lot, and the written record makes you more credible and your health provider more accountable.
  7. Do not let a medical health professional dismiss or disparage you. Kick them to the curb and get another. On the other hand, don’t go doctor shopping to get the diagnosis that you want; that is not productive for you or anyone else involved in your daily struggles.
  8. Ask your physicians to communicate with each other and make sure that they include your primary care physician in any messaging.
  9. Remember to be kind to others: your doctors, the nurses, your family, your friends, and yourself.
  10. DON’T PANIC!!! at any time. Remember, feeling powerless and not knowing what is happening is stressful. Learn everything that you can, do everything that you can, and then sleep well at night. Hugs to anyone who finds this meaningful.
More lavender for my garden!

There. Those are the best, most excellent lessons that I learned this year. Today I am out of the serious flare of the winter and feeling pretty darn great. I am on steroids, and my immunosuppressant drug’s dose has been doubled; I feel more like myself than I have in a couple of years. I headed out on errands this afternoon, bought a Starbucks, and signed up for a Tour de Fleece team at my local yarn shop. I bought some new lavender plants that I am going to put into the ground this evening and I am cleaning up the spinning wheel to see if I can get some paco-vicuna spun next month before my steroids get stopped.

I have some really serious conditions that carry a significant risk of a poor outcome. And yet, I feel a little like an imposter as I laugh and interact with other people that I encounter. The man at the drive-through window at Starbucks traded cat photos with me. The lady at the yarn store and I laughed and talked about spinning wheel misbehaviors; are the wheels worse if you name them? Behind the mask, I am still me, the old me; I may have scleroderma, but it doesn’t have me. I am kind of the poster child for what an invisible illness looks like, and that’s why there is this campaign today to “Know Scleroderma.”

Those serious conditions that I mentioned… they are complications of scleroderma, but they happen for other reasons, too. Some are rare, but some are not. Knowing about scleroderma can help with research efforts into these other conditions (sadly, some are now more common because of Covid long haulers), and perhaps the lessons I have learned will help others in their efforts to secure empowerment and medical treatment.

This is World Scleroderma Day.

Shine Like a Sunflower!

The BioGeek Memoirs: Snapdragon

I just love snapdragons! I mean, they have those cute little faces; they do look a little like dragon faces if you use some imagination.

Snapdragon plant in my front yard.

Snapdragons are great plants for me in my gardening efforts. They are really hardy, tolerate dry conditions, and there are new varieties that are small and easy to grow in containers and along the edge of your driveway or garden. The picture above is one that is growing in the margin between my rocked-in area and the driveway; I didn’t plant this guy; it is a volunteer that sprang up from a previous year’s plantings. The original plant was something like this one… a mixture of orange, yellow and pink that changes in the flowers as they age. Pretty cool, huh. I look at the plant and wonder how/why the pigment in the flower is changing over time. BioGeek, right?! It gets even better…

All of these plants are also volunteers from the original parent plant from a couple of years ago.

Do you see all of those colors? They are the result of genetic recombination that happened in the original plant’s flowers when the plant reproduced and created the seeds that rose up to produce this array of colors. Some of the offspring have clear-colored flowers (the yellow and the red), while other have the mixed hues and color-changing characteristics of the parent plant.

Notice, I said parent plant. The funky thing about snapdragons is that they self-pollinate and reproduce on their own with the pollen getting to the stamens within the closed flower without any intervention by outside helpers like wind or insects. In fact, they are so hard to open that only a really heavy insect like a bumblebee can open the flower to get to the nectar inside. As the (big old fat) bumblebee climbs into the flower the little hairs on its body pick up pollen. When the bumblebee flies on to another snapdragon and then climbs into that flower it can carry the pollen in with it to cross-pollinate the new plant with the previous one’s pollen.

Bumblebees started showing up in my garden last week, and I would like to believe that they have been busy with the snapdragons too. If you snap open one of the flowers like I did in the picture above, you can see the pollen-carrying anthers above the opening and then waaaay down at the bottom of the flower is the nectar with the ovary. An industrious bumblebee can push open the flower and then muscle its way in to the bottom. Yay! More flower colors are on the way when there is crossbreeding among my plants. Here’s a great blog posting (Ray Cannon’s Nature Notes) showing a bumblebee taking on a snapdragon.

All this brings me to Mendel and classic genetics. Gregor Mendel (1822-1884) was a monk who had a deep interest in the science. He lived in a time when genetics was very poorly understood, and the basic question was “how are traits transmitted to new generations?” Mendel chose a plant that self-pollinated like a snapdragon (pea plants) and controlled the cross-pollination between parent plants with distinctive characteristics like the color of the flower, the height of the plant, or the color of the pea. He cut away the pollen producing structures in the flowers, used little brushes to carry pollen from one plant to another (taking on the role of the bumblebee in snapdragons), and then put little fabric hats over the flowers to prevent any other pollination from occurring. Tedious, right? Anyway, this work led to the essential understanding in basic genetics that we all now know. Some genes are dominant, and others are recessive. You have two copies of each gene (one from your mom, one from your dad), and the inheritance of which copy you got from each parent is random. Here’s an online tutorial of classic genetics maintained by the Cold Spring Harbor Laboratory.

Good thing that Mendel didn’t choose snapdragons. Snapdragons are a problem for classic genetics because their genes don’t always follow the dominant/recessive inheritance pattern. Instead, some of the colors in snapdragons are both expressed at the same time, and we call that codominant. So…. a red snapdragon crossed with a white snapdragon will produce plants with pink flowers. We now understand how and why that happens, and there are lots of other examples of non-Mendelian genetics like blood type inheritance and tortoiseshell cats. If Mendel had chosen snapdragons to study, he would have floundered around forever, but thanks to him (and pea plants) the first understandings were worked out. Think of how hard that was… no one knew what the genetic material was or had glimpsed a chromosome, but he figured out the process using his pea plant data and some truly exhausting math. Way to go, Mendel!!

Seed pods on my snapdragon plants. Those seeds carry the next generation of snapdragons waiting to grow up next year.

So, when I see my snapdragons, I am transported once again to my biology classroom and those early genetics lessons with students. I am connected to the world of science and the legacy given to me by Mendel and others. Why are my flowers a mixture of pink, yellow, and orange? Hmmm…. maybe there is more than one pigment gene at work at the same time, and the amount of pigment being produced is changed as the plant ages? Is this some funky combination of red and yellow genes? I kind of think so, since I now have plants with clear red and yellow flowers: they must have two copies of either the red or yellow gene. Is there another gene kicking in to modulate the amount of pigment produced as the flower ages? What about the pigments that I can’t see, but are there for the bees to see? This is so cool, and I just love snapdragons!!!!

This isn’t just a garden, but a genetics experiment that I’ve been running for a few years now.

Yay, science!

Hannah and the CoalBear: Caturday, 6/25/22

Hi. CoalBear here.

I’ve been entertaining the Mother of Cats all day because, frankly, she is in a slump.

Well, now that I think of it, she should be in a slump. The only day this week she was frisky was Tuesday and look at what she did to me!!

She took me to the vet!!!

People, this was the most horrible thing that has ever happened to me. I got stuffed into the carrying crate and before I knew it, I was in the car. We ended up in a strange building with other people and DOGS and I kept crying, and the Mother of Cats just ignored me and took me to a little room where I had to COME OUT OF THE CRATE!!!!! I got weighed, physically cathandled by a strange lady, and then there were the SHOTS that I absolutely did not deserve because I am the best boy ever. You want to hear the worst thing about all of this…. Hannah exercised her right to refuse and didn’t have to go the vet. I think that she was laughing when we got back home again.

Okay, back to the week. The Mother of Cats is taking lots and lots of new pills now and parts of her don’t feel good because of the side effects (let me tell you about the side effects of those SHOTS!) so I am doing my best to be cute.

She finished her little quilt and hung it up on the wall behind her knitting chair.

The Mother of Cats used clear plastic push pins to secure the tops and corners of the quilt. I have been pulling the pins out of the bottom of the quilt and taking them upstairs to play with. I left both of them on the bathroom floor where she would be sure to find them this morning so she can put them back into the quilt again. Wasn’t that good of me?

I’ve also been trying to help her with her knitting, but she seems to be in a slump. She isn’t knitting much, and the stuff she has going is… boring.

Do you see how boring this knitting is? The pink blob is a sweater… maybe. The blue is going to be a pair of socks someday, and that pastel smish of funny colors will someday be a hat. Where are the cat toys? Hello? How can I be cute and entertaining if I don’t have all the toys in the world…

Although, I think that I am pretty darn cute with the toys I have now!!!

Well, I guess that is all for now. It is almost time for the baby bunny to come out in the back yard. Show time!

Mateo the CoalBear

Notes from the Mother of Cats:

  • I did get Hannah into the crate at least three times, but she was too strong for me and managed to push her way back out before I could get it zipped closed. She has another appointment next month and I’ll try some new strategies.
  • I’m in the middle of a big drug push to get my lung disease under control; I am breathing much, much better and I have more energy by far than I did a couple of months ago. The downside is… side effects. My doctors are running frequent blood tests to monitor my progress, adding more drugs to control symptoms that are concerning, and so far, things are going well, but I am pretty much homebound with pain, blurred vision, and dizziness. Two more weeks of the steroid push to go and then I start to get tapered off. Yay! I’m dealing with a lot of tendon pain as my immunosuppressant dose is doubled, but that has happened before and I’m hopeful that there is an end in sight.
  • What type of side effects, you ask? I gained 12 pounds in two days and my blood sugar soared into the high 100s. Opps.
  • I am getting out into the garden a little and there is a new rose bush waiting for me to plant it. Someday soon, little guy.

The pictures above are my morning pills, the braces that I now am back in because of tendon pain, and my new, beautiful rose. The name of the rose is… Easy Does It!

Just the rose that I needed for the week.