systemic sclerosis – Yarn, Books & Roses

Thoughts on the Night of the Beaver Supermoon

The supermoon just cleared the trees behind my house. It is really bright tonight, shining through my window, joy from the east. This moon is both special and hilarious at the same time: the Beaver Supermoon.

Oh, we have beaver here in Colorado! I used to go with my children at dusk to a local state park looking for them in a pond with a beaver lodge. The kids and I have seen adults and youngsters (kits) over the years. Sometimes they were in the shrubbery by the water, sometimes swimming across the pond, and I’ve even seen one chomping on a tree. I’ve accidently startled them (those tail slaps on the water will get your attention), and I’ve glimpsed them swimming across the water with a branch in their mouths. One summer we could see the drag marks in the wet earth as large sections of trees were dragged down to the water; these woody treasures provide both food and building material for the lodges and dams. Beavers are pretty special as their work in waterways create essential habitat for other species. This moon gets its name from the increased activity of beavers preparing for winter. It is also a larger moon this month, hence the name Beaver Supermoon.

This poster was on the wall in my classroom for years!

I’ve been simultaneously busy and stalled out lately. I have finally recovered from the absolutely horrible flare of never-ending tendonitis that forced me to abandon my knitting for almost a year. This is what my right wrist looked like last year at this time.

I tore the house apart as best as I could hunting for painkillers that I could take with this one!

The x-ray report after this adventure had the word “severe” sprinkled throughout it. My rheumatologist tested me for gout and pseudogout: both negative. She did write me a prescription for emergency prednisone and painkillers in case this happens again. Then the flare dragged on, and on. Then there was the car wreck and other adventures. I kept hopefully buying more yarn, and stockpiling new patterns, hoping that someday I could return to knitting.

Two weeks ago the pain finally stopped and I started knitting in earnest again. Look at what I managed to accomplish!!

My Extra Lite Bright is off the needles, finished and blocked. This sweater will become a layering staple for me this fall.

And just like that, I stalled out, consumed by endless yarny possibilities. I have all of this yarn! I have all of these dreams of new sweaters dancing around in my head; so many possibilities. What should I knit?????

As fate would have it, I also finished a book on the same day that I took that sweater off the knitting needles. Help! Double indecision!!! So many books waiting for me on my Kindle. Help. I’m on fire to get going, and unable to make a decision. Help me Supermoon, help!!!!

That’s how I ended up spending the day as busy as a beaver, kitting up yarn with patterns to make new sweaters. Yarn was wound, and a sweater was cast on… but I have two more sweaters that I have located needles for and I’m going to cast them on too. Three sweaters at once? Sure. Why not?!

The grey/pink yarn combo will become a Renaissance Sweater. The yarn in the middle (there are 5 colors there) is destined to become a Colorica cardigan. The yarn on the right has already been cast on and is becoming an Alchemist Pullover. There are some kits for more sweaters, but those are the ones that are seeing action right away. Why these three? Well… one is colorwork, one is a cardigan that will involve some lace and purling, and the third is just too cute to not get made right away. My hope is that no matter what my hands and wrists are up to, I will be able to get some knitting done.

Then there are the books. So many books. If I’m knitting three sweaters at once, maybe I should have several books going at the same time too. In that spirit I am reading and listening to all of these.

I’ve started reading Buckeye, listening to The Wedding People, and I’m pretty sure that I need a little Three Pines action right away, so it is going to be in action soon, too.

There are several other books nagging at me. I told them to go hang out with the yarn stash overflow. Still, they call to me. The yarn calls to me. I have fought my way through the indecision of making choices when surrounded by great possibilities. Is this what beavers feel when faced with a new stand of aspen? Whatever. I have made the decisions, I have made a start on the first sweater and the first books, and like the beavers that gave tonight’s moon its name, I am full of purpose and I have big plans.

There is a lesson here. A year ago, I was in a terrible flare, unable to knit or even read. The best I could manage was an audiobook, and even then, I had to play it over and over as I had trouble concentrating and following the story. I sought help, I tried new drugs, I stuck to my special diet, and I did my physical therapy. I came through that time, and now I am here, shining bright again. Just as the moon returns to full force at the end of each cycle, I have managed a comeback too.

In my excitement over the knitting and books I haven’t forgotten the chemo hats, port pillows, and zipper pouches that I also have to get done. Saturday, I get to meet up with all of my friends again for a sewing extravaganza to produce more zipper pouches, and one of my friends wants to take the three quilts that my sister started; they will go to a program for children getting their first bed. Who knew that this was a thing? Like the beaver, I hope that my work will ripple out and bring change in my community around me, supporting lots of new life.

Shine on Beaver Supermoon. Shine on.

The Scleroderma Chronicles: This is World Scleroderma Day!

A couple of weeks ago I went in for a routine blood draw at my local Kaiser clinic. I gave the phlebotomist my ID card and told her my name and birthdate: for some reason they like to verify these things, right? Anyway, what happened this time was… she exclaimed that didn’t look my age. (Well, yeah. That may be one of the bigger red flags for scleroderma… no wrinkles.) “It’s just my disease doing that,” I assured her. “I really am that old.”

This lady wanted to know what I had done to get rid of the wrinkles. She wanted this magic wrinkle remover too! I carefully told her about scleroderma. “I never heard of that!” she said. Still thinking that I was a lucky person, she drew my blood and I got out of there. I would be happy to have every single wrinkle that I have earned over the years, but no… I have scleroderma. The systemic form with limited skin involvement. Lucky me.

I do have wrinkles around my chin and mouth, but I was wearing a mask during the interaction with the lady at Kaiser. I had to go on oxygen this day (I have lung and heart involvement) and you can see the swollen tendons in my hand and the tight skin over my knuckles.

That’s why there is this thing called World Scleroderma Day. This is a complex autoimmune disease with illusive symptoms (brain fog… trouble swallowing…GERD…swollen fingers…trouble breathing sometimes…fingers that suddenly lose circulation and turn white or blue…) that make the disease difficult to diagnose without specialized testing and evaluation by a scleroderma specialist.

Systemic sclerosis (the form of scleroderma that I have) is thought to start with some event (still unclear) that triggers the formation of antibodies that target specific molecules the nucleus of cells. These antibodies lead to damage in blood vessels and their linings; the damaged blood vessels release chemical signals that trigger a cascade of events that impact other cells of the body. Some cells are related to inflammation. Other cells are tipped over into forming uncontrolled scar tissue (fibrosis). Here is the problem: the tissue engaged in fibrosis is all of the connective tissue. What is connective tissue, you ask? Think of all the ways a person is held together. Tissue that makes your skin stretchy. Tissue that holds your muscle fibers together. Tissue that makes up your tendons, ligaments, and the structure in your joints. Tissue that holds your intestines, heart, kidney, and lungs together. The cartilage in your ribs. All inflamed, under attack, and forming thicker and thicker layers of scar tissue. Some of this damage causes calcium deposition. Unobservable from the outside, the patient is slowly hardening inside. The most obvious symptoms is the skin thickening and then pulling tight over time.

Scleroderma, and especially systemic sclerosis, has the highest fatality rate of all rheumatic diseases. Did I mention that there is no cure? There are treatments for complications that develop like pulmonary arterial hypertension (PAH) and interstitial lung disease (ILD), but they, like the immunosuppressant drugs that many of us take, mostly stabilize and slow progression. (Dear Kaiser lady… that’s why I was getting a blood draw. The drugs that I take are risky, and my doctors need to make sure my kidneys and liver are tolerating the meds okay.)

So, what is the purpose of World Scleroderma Day? It’s to highlight this condition that impacts more people than it should even though it is rare. It’s to raise awareness of the symptoms and hopefully aid in other people getting an appropriate diagnosis. Maybe shining a spotlight on scleroderma will help in getting funding for research, treatments, and even a cure.

Sunflowers are the international symbol for scleroderma.

Here is where you can learn more about scleroderma, it’s symptoms, and treatment.

PS How was my blood work? Yay, doing okay!! Kidney function is up into normal ranges again!!! How old am I? I was born in 1951. 🙂

The Scleroderma Chronicles: Thoughts on the Night of the Strawberry Moon

There it is, the Strawberry Moon. I snapped this shot around midnight last night while the kitties chased moths on the catio.

It’s June. I can hardly believe it. June is Scleroderma Awareness Month. June is the month of thunderstorms and tornado watches. June is the month of the miller moth migration (Mateo’s favorite time of year!) June is the month that Hannah came home to live with me. June is the month, year after year, that my scleroderma begins to improve after a long, cold winter. This year June has been just great! After a very rainy May hot, sunny weather finally arrived this week and the yard began to burst into bloom. First, let me show you the weather…

Crazy weather May!! That is hail on the catio, all of that rain appeared in my pot on the deck (you can see it in the first picture… the pot was partially covered by the table above it…) in just 48 hours, and then there was an exciting outbreak of tornados just east of me. Whew! In the breaks between the storms I managed to give the lawns their first mowing of the year, and I made great progress pulling weeds out of all of my gardens. I kept thinking of a saying someone said to me recently as I worked in the yard and gardens: How do you eat an elephant? One bite at a time. How do you clear a weedy wilderness? One clump of grass at a time.

Look at how great the yard is starting to look! The grass is growing like crazy after the deep soaks, and there is lots of wildlife. I managed to get the catio all finished, and the cats and I are outside every day now enjoying the show and soaking up some sun.

Mateo is enjoying the emergence of a new, tiny baby bunny!

So, here is the crazy thing. I have been struggling big time with my symptoms. I have been unable to knit (or type for that matter) for several months now. I rely on the knitting to help me keep my hands functional, and also for mental health reasons; the loss of knitting has been hard. Even cranking the knitting machine has been too much for my healing ribs and sternum. My other joints are so bad I have spent most of my time moving a heating pad from joint to joint trying to manage the symptoms. My heart has been misbehaving again, and my lungs have been unhappy. It has been a hard winter, and I have to admit, I’ve been concerned that I may be through the tipping point and on the downward slide of my scleroderma journey.

Then June arrived.

Like magic, after every morning in the sunshine drinking my latte, after every afternoon clearing out a small section of the gardens, I have been getting slowly better. My joints are recovering. My heart has stopped having tachycardia events. My oxygen levels have improved. My hands and wrists are much better. I am writing this post. I am better. I am knitting again. I’ve started a simple summer tee in a happy pink yarn, and my wrists are letting me knit for an hour a night. I usually bristle up when people suggest that I can just get better with some sunshine and exercise, but in this case it did help.

Other fun that I’ve been enjoying on the internet is the journey of Sunny and Gizmo, two Bald Eaglets that fledged early in June from their nest by Big Bear lake in the San Bernardino mountains in California. Sisters, the two have remained with each other in various trees and have returned to the nest several times. The other fun was the adventures of Ed as he ran free in Tennessee for a week. Yay Ed!! You know that I had to cheer the zebra running wild!!

I do hope that you saw the strawberry moon. It was a happy, bright object in the sky, lighting up the back yard and the bunnies chasing each other over the lawn. The moths entertained the cats, and I sat in the dark with them on my swinging patio chair last night feeling pretty upbeat. This full moon was the last of the spring; what is coming now is the heat of summer. Usually, I kind of dread the summer heat, but last night I felt absolutely sure that I was up for the days to come. How do you eat an elephant? One bite at a time. How do you knit a sweater? One hour at a time. How do you face down the scleroderma monster? One beautiful day in the yard/catio at a time.

This is scleroderma awareness month. I went to a scleroderma conference in Denver last month, and this Saturday I will go on a fundraising walk with all of my sclero-friends. I plan to rock the teal! Bring it sclero-monster! I am ready for you!!

Friday is Hannah’s gotcha day. She is now 5 years old.

Last night I started reading the latest edition of Scientific American Magazine. The cover article is about new research that shows… wait for it… sunshine can suppress the immune system and make autoimmune diseases improve. Look at that! I’m kind of thinking that happened to me over the last few weeks. Evidently, it is a balancing act: sunshine can also make things worse. Yay! Once again, I get to use myself as an experimental animal as I figure out how much I can tolerate. 🙂

Zebra running wild!!

Hannah and the CoalBear: Shipwrecked (on Sea Glass Island)

Hi. I’m Hannah,

It has been a long time since I’ve given an update on the Mother of Cats. I know, I know… things have been going on that are hard to explain, and the Mother of Cats hasn’t been fun AT ALL lately. Let’s start with the strange things…

The house got painted! There was complete chaos around our house that went on for days! Do you see my expression when I saw one of the worker men in the window? They put plastic over all of the window, and there were all of these bumps and strange noises, and I totally was exhausted keeping the CoalBear calm through all of it. Whew. Then the painters finally went away, and the next problem became apparent…

THE CATIO WAS GONE!!!!!!

A cat tantrum is an ugly thing. Mateo is just a little cat, but he can be a little heartbreaking too when he doesn’t get his way.

She works really slowly, but the Mother of Cats has been constructing a new Catio for us. I keep urging her to work faster, but does she listen to me? She takes a day off for every day she works, and at the rate that she is making progress, it will be snowing before this gets done. The baby bunnies will be grown up and gone. The baby robins will be grandparents. I will be too old to appreciate my days out in the sun…

Mateo really, really wants to go outside to have a chat with this baby bunny…

With all of the outside work going on the Mother of Cats hasn’t been knitting very much. She did manage to get one pair of socks done, and then she made a new chicken that she took away with her on one of her trips to the doctors. Here’s the chicken.

The chicken and a couple of the babies went to the Pulmonary Function Testing lady to use with her patients. Mateo wanted to keep it for us, and I did mention that it would be kind of nice if she stuffed the little chickee with catnip, but did she listen to me? No. No, she did not! They went out to the car with her, and they stayed with the PFT lady. I sure hope that those silly patients appreciate the chickens, and if they throw the little one around that would be great! I’m pretty sure that they would like catnip, too.

So, that’s what’s been going on. NOT MUCH KNITTING! The Mother of Cats is still unable to cast on her new sweater, and while she spends time moving yarn around into interesting combinations, she hasn’t cast on her sweater. Shipwrecked. She is shipwrecked. When she isn’t fussing around outside (and we’re stuck INSIDE looking at her through a window) she is laying around with a heating pad on her knees and braces on her wrists, dreaming about prednisone, and looking at yarn to buy online. Shipwrecked. She isn’t even using her knitting machines, which at least was a little fun. This is so bad even I’m dreaming of yarn. And tuna.

This is Hannah, signing off.

Notes from the Mother of Cats:

Yep. My hands are total crap at the moment. My rheumatologist ordered some x-rays and the word “severe” appeared several times in the report. My wrists are the worst.

My knees aren’t doing very well, either, and my rheumatologist is exploring options with me. MORE DRUGS!!!! I’m a fan right now. Hannah wasn’t kidding when she said I was dreaming of prednisone. Steroids injected into my knee sound really good right now. The good news is that my lungs continue to improve, and the red flags that were raised at the time of the car wreck CT scan in December have resolved in favor of nothing serious. Yay! The changes in my lungs have disappeared, and the growing “mass” in my thyroid turned out to be a cyst. The bad news is that the follow-up CT scan in March showed that my broken ribs and sternum (fractured after all… not a shock) were struggling to heal, and I was told to lay off the knitting (and especially the knitting machine) FOR A FEW MONTHS!!!! Obviously, these medical professionals don’t understand that I need these things for my mental health. Sigh. Mateo isn’t the only one wanting to throw a tantrum lately. I don’t think that my doctors would be happy about the catio construction effort, but it is kind of an emergency!

The emotional support chicken was a huge hit at Kaiser pulmonology, and they will let me know if I need to supply them with more of the little chickees. My pulmonologist mentioned that the kids with asthma who come in for testing would love a little chickee… heal faster ribs!!! The chest pain has stopped even though I have been swinging a hammer this week, so I’m pretty sure that knitting again is right around the corner.

So… I can cast on Sea Glass, right?

<Hannah: send tuna!!>

Hannah and the CoalBear: Lazy Mother of Cats

Hi. I’m Hannah.

I would like to lodge a complaint against the Mother of Cats!!

The world outside has changed over the last couple of weeks. The sunshine is bright and warm; I love to sleep in the sunshine, don’t you? There are more squirrels than usual chasing each other through the trees out front, and sometimes they even come right up to the windows. The bunnies are spending lots of time in the yard where the CoalBear and I can see them, and there are birds again. Lots of birds!! All of this change is really exciting, and the CoalBear and I just want to spend all of our time playing. So, is the Mother of Cats spending all of her time entertaining us? Giving us tuna? Letting us outside to play in the sunshine and delivering the kitty cookies right on time?

No. She is not!

The Mother of Cats has been sleeping more than usual (and I’m a cat, so believe me, that is a lot!), reading her books, and knitting. Knitting isn’t too bad if we get to play with the yarn, but nope, nope, nope… once again she is not sharing her toys with us like she should.

Mateo the CoalBear is doing his best to play anyway! He loves the needles, I perfer the yarn myself. He is kind of a weird kitty…

The Mother of Cats has been listening to an audiobook during some of her knitting, so I get to listen along with her while she knits and I help with the yarn management.

This is the book that we listened to last week.

Imagine a man who dreams of waves of energy zooming through the air from a spark of electricity to a device that can detect the waves; the device is like magic, letting messages travel from one place to another without wires. He dreams of all the changes that the wireless messages can make in the world, and also about how much money he can make from the business that installs and runs the devices that make this possible. His name is Guglielmo Marconi. Pretty cool, right. (Can I have some tuna now… all this typing is making me hungry…) At the same time in history, there is a man who works creating and selling “cures” for illnesses. He is married to a woman who is very bossy and demanding (CoalBear… I’m looking at you…) and one day he snaps, kills her, and tries to escape with his true love to America on a ship. His name is Hawley Harvey Crippen.

I have to be honest; I played a lot with toys and this fortune paper from a Chinese cookie while the whole book thing was going on…

Are you tired of the story yet? It gets really exciting now. Chief Inspector Walter Dew of Scotland yard finds the reminds of the murdered wife. The hunt for the escaped murdering husband with his girlfriend becomes a big deal in the newspapers, and the captain of the ship realizes that two of his passengers are the people being hunted by Scotland yard. The captain sends a message back to shore using (what else???) his Marconi wireless device. Chief Inspector Dew boards a fast boat and the chase across the Atlantic Ocean is on, with coordination between ships made possible because of … wireless messages using the Marconi system. Marconi messages keep the press updated, and suspense builds as the public hangs onto every new update and intercepted message reported in the news. Whew! My whiskers were just a tingle listening to all of this! Chief Inspecter Dew overtook the ship with the murderer, and he was apprehended before he could land in Canada. Because of the publicity, Marconi’s business was secured. What a story. What a book!! I absolutely need some tuna right this minute!!!!

Look at how much the Mother of Cats got done while she was listening to the book and knitting.

So that has pretty much been the last two weeks. Sleeping, knitting, and listening to really interesting books. I like the yarn and the books, but I do hope that the Mother of Cats will stop being so lazy… Mateo and I have needs, right?

I’m not lazy… I’m a cat. I’m supposed to sleep all day.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

The sweater that I’m knitting is the Winter Albina sweater by Caitlin Hunter. I’m really pleased with how it is working up.
I’ve already started another Eric Larson book: The Demon of Unrest.
I’m in another scleroderma flare, and I did go see my rheumatologist for help. I am now in possession of an emergency pack of steroids and narcotics. Whew. It’s good to have an emergency pack!
I’m doing better lately, but the cats are still kind of disgusted with me.
What was that Chinese cookie fortune that Hannah was playing with?

Friday, February 28th, was Rare Disease Day. I found that I was ~~too lazy~~ unable to write another post for the day, but here are some nice ones that I wrote in previous years.

The Scleroderma Chronicles: The Surreal Stumpy Adventure

It’s been kind of a tough month. I had a bad flare and couldn’t knit, I suffered through an annoying 30-day heart monitor test, and then there was Thanksgiving. I’ve been slowing clawing my way back from the flare over several weeks, and finally last week I started to feel pretty much like myself again. I even made several hats on my Sentro knitting machine using a power screwdriver to turn the crank for me.

This actually works better than you would think. 🙂

I pruned and fed the plants in the indoor garden. Gosh, they really look a lot nicer. Look at how nicely the lavender plants cleaned up.

The miniature roses had gotten pretty bushy, and I kept seeing some aphids on the new growth. I aggressively pruned the plants back to remove more than half of the growth, sprayed the plants well with Neem oil, and then gave them some fertilizer. They look somewhat sparse now, but the new growth is good and I’m not seeing aphids. I really needed to get the size of the plants under control anyway as they were getting close to the top of the growing space under the grow lights.

There aren’t any new rose buds yet, but I think that this was a good course of action to manage the aphids. Some of my other plants have started to put out blooms, the African violets being the stars of the month.

So, the indoor garden is looking pretty good, and the difficult month was finally coming to an end. My wrists still hurt, but I was definitely on the way back to “normalish”. I decided to head out to buy a fast-food hamburger treat for myself Tuesday evening. I love these little trips out of the house; each one is a little adventure that really perks me up.

This trip was really something, a surreal adventure that is still playing out.

I had just cleaned out my car (Stumpy) a couple of days before, and before I left on my outing, I gave him a fast little vacuum job and brought in the trash cans from the street. Gosh, Stumpy looked good! I took off to the hamburger joint where I scored my favorite burger, some onion rings, and a chocolate shake. This is a lot of fat and salt, and I was going to have it anyway!!! Did I mention that my server looked just like Dylon on The Great British Bake Off? He gave me a coupon for free ice cream if I completed an online review of the food/service. Yay! Free ice cream!! On the way back I sneaked some onion rings from the bag as I drove past the high school where I used to work. It was early evening, and there was a car parked along the street above the sports stadium and field, the driver packing things into the back of his car. Someone finishing up sport practice, I thought to myself as I went by. Still looking at the school, I remembered how much I loved working there, how much I loved the kids, how much I loved the greenhouse attached to my classroom…

I had to stop at the light at the intersection by the school, and I remember that I was very focused on the oncoming cars before I started moving with the green light because… high school intersection… crazy new drivers… must be careful…

The light changed, I slowly started out, and there was a sudden flash of light and movement to my left as I crossed the intersection. I was hit by a car that had run the red light; poor Stumpy was sent careening across the intersection and ended up dropped onto the median of the street I had been crossing, now facing directly at my old classroom and its greenhouse. Kind of ironic, right? The collusion alert system in the car immediately activated and there was a voice checking on me and calling for emergence responders. A witness arrived soon after to help, and a teenaged girl started directing traffic. The witness was a Lacrosse coach, and I wondered if he was the driver packing up his car when I passed him by the sports field. The fire department arrived with paramedics who got me out of the car (taking my car keys out of my hand and leaving them with the car), into an ambulance, and off we went to the nearest hospital with an emergency department: I had some serious chest pain going and my blood pressure was something else. “Don’t worry,” said the paramedics.” We got your food for you out of the car”. Did I mention that this was a little surreal? “Did you know that you were hit by a Humvee?” Yep. Surreal.

So, I had a great little emergency room visit. I had some testing that determined that I wasn’t having a heart attack, but I did have a couple of broken ribs. The interactions with the trauma physician were kind of hilarious as she didn’t quite know what to make of my CT results… “you have a lot of interesting structures in your lungs,” she told me. “You seem kind of dry… you need to drink more water.” Whatever. It must be the diuretic that my doctors prescribed because they are more concerned about some other things going on… like pulmonary edema… and heart failure… somehow, she focused on the wonky kidney results and didn’t notice the rest. Have I mentioned surreal? I had called my son to come get me home because I didn’t have a car or door keys any longer, and he packed me up and got me out of there at that point. Five hours after picking up my fast-food, I finally started home again with my son, a little wobbly, drugged up on pain killers, and still in possession of my hamburger. I ate a couple of the cold onion rings in the car as he drove through the night…

I’m pretty sure that my poor car Stumpy is totaled.

…and the phone rang. The police finally called. They were with Stumpy, and he was now in the parking lot of the high school where I used to work, right outside the door I used every morning next to my old classroom. We turned around and headed back to the police at the accident scene to make my statement and to get the house keys out of the car. The police officer was wonderful; she was still making her way through all the calls and witness reports, but it absolutely looked like I had been hit by a driver who illegally ran the light. She made the arrangements for the car to be towed and stayed with it for me. I ended up hugging that officer and giving her an audible book recommendation. My chocolate milkshake was in the Stumpy’s cupholder, still cold with the straw in it, and I took it back. Of course I did. As we drove away the officer was doing a search for the book I had mentioned to her. Goodbye old classroom. Goodbye Stumpy car that I loved. Thank you both for all the good times.

Surreal.

Aftermath: My wonderful insurance has stepped up and is handling everything. My neighbors are telling me not to worry about the rental car yet: they will drive me anywhere I want to go. The CT scan at the ER picked up on a couple of issues that I need to follow up on, and I already have new appointments with my doctors to do that: the atelectasis in my lungs is back, and something is going on with my thyroid. Who knows, this all might have been a blessing in disguise.

My wrists are strangely better, and I finished knitting my socks.

My hamburger, when I warmed it up and ate it the next evening, was still delicious!

I found the coupon for the free ice cream when I finally cleaned out Stumpy in the tow lot Friday. I plan to leave a great review…

Stumpy was a 2018 Subaru Forester, and I can’t praise his safety features enough.

The Scleroderma Chronicles: and today’s new words are…Paroxysmal Atrial Tachycardia

So, finally the heart results have come back. If you haven’t been keeping up with all of my latest and greatest developments in the slow-moving train wreck that is called systemic sclerosis, let me quickly catch you up.

Over the summer I started to notice that my Fitbit was alarming frequently because my heartbeat was high. My heartrate was jumping suddenly from a moderate mid-70s bpm to over 140 bpm: cue the panting! I’d have to stop whatever I was doing to lean over while I caught my breath, and then it would be over. Sometimes my chest hurt, and I was pretty sure that this was contributing to my fatigue.

All of this craziness happened while I was trying to make hats on my Sentro knitting machine.

This is what I described to my cardiologist as my adventure on the stairs: I had watered the lawn, came indoors, walked up the stairs and was then suddenly profoundly out of breath.

I do have a long history of shortness of breath, and I’ve been diagnosed with several heart and lung issues that explained my symptoms: pulmonary hypertension, cardiac fibrosis, fluid around my heart, lung disease, and… yeah. I’ve been short of breath like this for a long time and I’ve just been dealing with it as my new normal. Still, the Fitbit was new data, so I sent an email to my cardiologist, and he ordered up a 30-day heart monitor test.

Tuesday afternoon the results were in, and my cardiologist contacted me with the results. It’s kind of a good news/good news/bad news diagnosis. I have a type of supraventricular tachycardia called paroxysmal atrial tachycardia (called PAT for short). I had to do some google searches to understand those crazy terms. The commonsense translation would be: sudden onset rapid beating of my heart’s upper chamber (the atrium). In even more simple terms, my heart rhythm slips out of control suddenly and the upper chamber is beating waaay too fast. Here’s the good news: this is a pretty benign heart rhythm issue (no blood clots, heart attacks or strokes here!!), and it can be treated (probably). The bad news is… I’m stuck with it, and it is pretty unpredictable. The other bad news is that I should go on oxygen more often in the daytime as PAT episodes seem to be triggered when my oxygen levels drop. That’s why it hits when I’m folding laundry, or right after coming up the stairs, or when I rush to the door to answer the doorbell…

Hannah: Listen, the doorbell is enough to give anyone a heart attack!!!

Why wait on a new drug? Well… I’m just now recovering from a pretty bad flare that hit my tendons, wrists and knees with paroxysmal fury. Paroxysmal is a great word, don’t you think? What is really crazy, my heart symptoms improved while I was down with the flare, making me wonder if the two are somehow connected. I want to wait to start a new medication until after my rheumatologist has a chance to sort out what is happening with my poor wrists and knees. I am suspicious about calcium being involved somehow, and the treatment for PAT involves calcium channel blockers. There may be no connection if there are different pathways involved, but still… calcium is the multi-headed monster of the moment with new calcium deposits appearing on my arms and legs, osteoporosis, and a previously floated notion that I might have pseudogout (which is caused by calcium pyrophosphate crystals in joints… wrists and knees being hit the worst… and my knee x-rays showed that I had calcium deposits in the tissue around my knee…). My cardiologist is okay with a delay in treatment with the understanding that I need to contact him if things get worse.

I just love my doctors!

So, here is the lesson from this adventure. Data really changes a conversation. Having that picture of my Fitbit made a huge difference; after months of explaining that I had sudden shortness of breath things changed with the one email and attached photo. The results of the heart monitor test have now returned a data-driven diagnosis that helps me understand what is happening and makes treatment possible. It is helpful to email your doctors (instead of making phone calls…) as you have a clear record of your interaction. Google with abandon!! Rely on the advice of your doctors; they went to medical school after all, but try to be an active partner in your treatment plan.

Dang. There is another diagnosis on that growing list… no one will believe me so we should just keep this quiet. Paroxysmal Atrial Tachycardia.

In the meantime, the cats are keeping their eyes on me!

Postscript: I forgot to mention, that of the three types of supraventricular tachycardia, PAT is the one that is the least common. Figures. Once a zebra, always a zebra!!

The Scleroderma Chronicles: The 39% Imposter Syndrome

It was the third day in the Intensive Care Unit following my lung biopsy. I was sitting up in the bed, rocking all of my tubes but finally off the high flow machine, drinking a Starbucks latte and chatting with a visitor. The nurse came in the door and stopped short, taking in the scene of me, the Starbucks, and my visitor. “I don’t believe it!” she exclaimed. “They just told me all the things that are wrong with you, and I walked in here expecting to see a gravely ill person. Instead… here you are! Not what I expected!”

There I am, day three post-surgery after ditching the high flow machine for a regular oxygen line.

“Yeah, I get that all the time,” I told her. It’s the curse of chronic illnesses… you adjust and stop acting sick. Your condition is invisible, and it is too exhausting to explain to people what’s wrong when the list of diagnosed conditions is… well… exhausting. Seriously, if you say more than a couple of things it starts to sound like you’re just making things up. It doesn’t help when the diagnoses sound fake to begin with (systemic sclerosis associated interstitial lung disease… it’s called SSc-ILD for short, but still… sounds like something invented in a science fiction novel, right?). It invariably gets worse if people start to share back some rheumatic or autoimmune conditions that they know of (like fibromyalgia or Raynaud’s), and you are compelled to say… “Oh, I have that too…” See what I mean? Attention-seeking hypochondriac is sure to cross their minds. I mean, I would wonder that… It is much easier to cover up as much as you can and act normal.

I’ve been thinking about this a lot. Several patients in the support groups that I belong to have been struggling with family and friends who are unable/unwilling to accept the diagnosis. They don’t want to hear about it, they don’t want their lives to change, and there is no support. There has been heartbreak and tears, to be frank. Others in the groups have shared that their families also refuse to accept the seriousness of their condition(s) because there have been years of struggle to obtain the diagnosis, and after so many doctors have said that it’s all in your head, or, you need to control stress better, they kind of believe that. From the perspective of these family members, their scleroderma family member is just trying to milk the diagnosis for attention. To make it worse, some patients (and this is exhausting, believe me) start to list all of their symptoms as if to justify their diagnosis. It is a little desperate, and more than a little heartbreaking.

Hannah: the Mother of Cats is making a new patient in her Zoom support group an emotional support chicken!! Her family is unwilling to become involved as she grapples with the implications of her new diagnosis.

Then there is the more insidious problem: what did you do to make this happen? I have been asked that, and it usually is followed by advice about things that I can do to control my scleroderma and the resulting lung/heart complications or even how to make myself get well. The implication is, if you don’t do this (herbal treatment, sunshine, exercise, wacky stem cell injection), it is your own fault that you are sick!! It happens to a lot of us. It eats away at self-confidence, and makes me, and other patients question just how sick they really are.

I, and a lot of others in my extended scleroderma community, feel like fakes a lot of the time. Like, almost all the time!

I mentioned that to my pulmonologist last week on the phone, and he was really direct in his response: do not fall prey to imposter syndrome!!! This is really happening to you, you are dealing with it very well, but you need to remember to take care of yourself!

I had never thought of imposter syndrome in this way, but I think that his point is well made. Maybe I should have a poster made with this written on it. With some sunflowers and a tuxedo cat for interest. Every person diagnosed with a serious chronic condition needs this, because it is easy to just trick yourself into pretending that you are “better” and then the bad decisions get made. Like going off your meds. Or partying like it is 1999. Or eating all of those things that are essentially forbidden at once! There has been a rash of wailing patients in my online support groups who say things like… I went off my meds and started treating myself with natural remedies, and now [insert new symptom that has them terrified] is happening. Yep. That is imposter syndrome, hard at work. No wonder my doctor was so firm with me.

Because the point that he was making is that I am pretty ill, and I need to own it. I’m in a very small group of scleroderma patients who have the full battery of the more serious systemic sclerosis complications: pulmonary hypertension, interstitial lung disease, and diastolic dysfunction. I am being treated aggressively for those conditions, and I am doing really well, but they haven’t gone away.

I finally pulled myself together to check what the survival rates are for patients with two of my concurrent conditions (SSc-ILD-PH) and discovered that there are recent studies that looked at patients being treated with the same drugs that I am on.

This study, done in 2009 with patients on the same drug regimen as mine, showed the 3-year survival rate to be 39%. Oh, oh. Not an imposter any more.
This study, published in 2011 has a 3-year survival rate of 47%. Oh. That’s better.
A huge study done in Germany and published this year, shows that scleroderma patients with ILD-PH had the worst outcomes: the 5-year survival rate was 79%. Gosh, that is a good-looking number!

I see a trend. Do you see a trend? It looks like things are getting better and that survival rates are going up. I have to admit, when I saw that first 39% I almost panicked and stopped searching, because… I was diagnosed and started treatment for pulmonary hypertension and diastolic dysfunction exactly 3 years ago. The ILD diagnosis came in a few months later. The clock is ticking, and I am one of the 39%… talk about imposter syndrome: how can I be this functional when the majority of patients like me are already dead?? I’m a fake, an imposter!! That can’t be true, it is not true, and that new data shows what is happening: it looks like the treatment plans of today are really making a difference. My pulmonologist feels that the drug that I’m taking to control my lung disease is a game changer, and that drug was only approved for use with scleroderma patients within the last decade.

For some reason the term 39% Imposter has stuck with me. That’s me. I’m not really all that sick, because only 39% of me is pretending to be sick. Or well. Whatever works today. I’m thinking about a tee shirt with the slogan. I’m rocking the imposter persona. Maybe a shirt that says 39% Imposter and 100% Survivor…

I mailed back the heart monitor last Monday and now I’m waiting for the results. It has been a difficult three weeks because the flare just won’t go away, my wrists and knees are being bad boys, and now I have painful heart palpitations. Sigh. It is always one thing after another.

And yet, in my heart, I don’t feel sick at all.

Imposter Syndrome.

But only 39%.

Hannah and the CoalBear: The Mother of Cats is Broken (Again)

Hi. I’m Hannah.

I’ve been spending a lot of time in my box keeping my eye on the Mother of Cats lately.

Life has been so boring lately at Casa Mother of Cats. Last week the Mother of Cats noticed that she had a sore lump on her arm along one of her tendons. Then her wrist started to hurt. Then her arm and hand started to hurt a lot and her wrist got swollen, so she put a brace on it. I hate the brace because it is clunky when she pets me. I was already unhappy about the brace when she got worse, and her wrist and hand hurt so much that she couldn’t even get our tuna open!! THE HORROR!!!! She stopped letting us outside and just laid around sleeping and ignoring us. While this was going on the weather changed outside and I didn’t even get to go out to see what was happening.

All of the leaves fell off of my tree, and it suddenly got really cold. Most of the birds that were hanging around the feeder disappeared, but that ~~darn~~ cute dove and the bunny look like they are planning to hang around forever. We love to play in the dead leaves and to watch the doves, but did the Mother of Cats let us out all morning like usual? No. She did not. She just dumped out some tuna without even mixing it up properly and went back to bed. This is not the care that I am accustomed to receiving!

She spent a couple of days immobile with heat packs on her wrist over the brace, and then she had to put a brace on her other hand and said it hurt to walk. The Mother of Cats was completely broken at that point! She was such a baby about getting up to give the CoalBear and me our tuna and cookies. I had to just insist that the late-night tuna snacks arrived on time. I had to actually MEOW to get her up and moving. Lazy, lazy, broken Mother of Cats.

Slowly the Mother of Cats got better, and yesterday she managed to function without her brace all day. Today she finally wove in all the ends on her new sweater and tried it on. I tried to sleep on the sweater while she was doing that and chased the ends (hello… I’m a cat!), and it was like she was finally returning to normal. Oh. Look at that sweater. It is kind of cute. She doesn’t look all that broken today; maybe I’ll start getting better care again! Maybe she will let me out onto the catio later tonight so I can look for bunnies and even that scary raccoon.

In the meantime, I guess I’ll catch a nap.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

I have had severe flares of tendonitis before, but this one took the prize! Once it got going the inflammation affected all my other joints and even my breathing. Whew. Glad it is over: it’s been 10 days without knitting!!!
Do you know how hard it is to open a package of tuna or a bottle of Tylenol with only your left hand?
I binge watched Dopesick during the worst couple of days and ended up tearing the house apart hunting for some oxycontin that I thought I might have left over from my lung biopsy adventure. No oxy, only Tylenol. Sad me.
A friend told me that there is an insurance code for “knitting injury”. I kind of laughed every time I thought wistfully of knitting and was prevented by… bad wrist, bad!!! I had to laugh every time I considered heading into urgent care with my pretty sad knitting injured wrist…
The sweater is La Prairie by Joji Locatelli. After blocking and finishing it is everything that I hoped for.
I’m slowly easing back into knitting by using the little knitting machine to make hand warmers…
While I was cut off from knitting, I read several new books of the science fiction persuasion. My reading challenge for the year is almost completed!

Hannah and the CoalBear: It’s Sweater Time Again!!

Hi. I’m Hannah.

Do you see all this yarny goodness that I’m cuddled up with?

The Mother of Cats has taken down the sweater that was in time out (I wish that Mateo was in time out… he has been annoying all day!!) and started knitting on it again. She was a little worried about coming back to a project after so many months, but it turned out to be kind of easy for her because she had made so many notes on the pattern and even made a big knitting aid to help her keep track of the yarn colors, the pattern, and the decreases on the sleeves.

All the numbers refer to the chart rows for the pattern. The dark boxes are the decrease rows, and the numbers to left side are the yarn colors. Whew! It’s enough to give me a headache!! Maybe some tuna will help…

Anyway, she spent the week knitting away on the first sleeve and got it finished in the middle of the week. Here’s what it looks like:

Pretty cool sleeve, right? The pattern goes down the outside of the sleeve, and the Mother of Cats is soooo happy that she doesn’t have to knit too many bobbles.

She’s now working on the second sleeve and really worried about running out of one of the yarn colors. She keeps weighing the ball of yarn and saying things that I think are inappropriate for kitty ears under her breath. Poor Mother of Cats. I never stress. Well, I only stress a little. Okay, I am in the closet for hours every time a stranger comes to the door, but that is just good sense, right?

The worries about the yarn are pretty bad, so I’ve been hanging out with the Mother of Cats while she knits on the second sleeve.

Anyways, the sweater is coming along well, and I think that it is one of the comfiest knits that she has made in a while. I just love taking naps on it!! Isn’t the color nice? It really makes my coat shine.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats: That sweater is La Prairie by Joji Locatelli. I’m now in a rush to get it done before the first snow of the season. Next week is going to stay warm, so maybe I’ll pull this off!

After a phone call and then a few email exchanges with my cardiologist it was decided that I needed to wear a heart monitor for the next 30 days to rule out atrial fibrillation (AFib); evidently that is a systemic sclerosis thing, and I’m high risk to develop it because of other things going on with my heart. I did not see this coming, but it absolutely matches my symptoms.

That heart monitor is just fabulous!! The whole thing is taped on, I can wear it in the shower, and there are no leads to worry about coming loose. The monitor is blue toothed to a phone that I need to carry at all times, and it is transmitting to both the company that owns the monitor and my doctor. If I have another event while wearing it, I can send a message immediately to my doctor on the phone. Isn’t this technology fabulous? Of course, nothing has happened while I’ve been wearing the monitor, but I still have 28 days to go…