systemic sclerosis – Page 2 – Yarn, Books & Roses

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…

Mateo: I am not annoying!!! Hannah should be the one in time out because… hold on… I’ll think of something… she hogs all the tuna!

The Scleroderma Chronicles: True North

It has been quite a week. Something happened that put me into a snit that made me think about priorities all week long. Actually, several things are happening all at once and it has taken me days to sort things out. Let’s start with the snit, okay?

These are the chicken sisters, and even though they are really cute, they are the focal point of the snit that has made me rethink my priorities.

I started making emotional support chickens to give to people who needed… well… emotional support. People who are dealing with grief, or anxiety, or an uncertain future, or struggling with medical challenges. I want to send something to people like me who are dealing with something significant and life-altering that is also mostly invisible to other people. The chicken says (Ba-BOK!!!) I see you… I am here for you… give me a hug. That is the mission. It falls under the overarching mission of Knit Out the Yarn Stash Before I Die. Hey, I have a lot of yarn, so there is a sense of urgency there for me.

Well, the day I took a chicken to my knitting group seeking to enroll others to knit chickens things kind of backfired. As in, people begged me to make them chickens. Ugh. I couldn’t say no, because all of these ladies are making/giving things for others in the same circumstances as the people I gift the chickens to. I signed on to knit 5 chickens with the understanding that each chicken would require a cash donation to Frayed Knots. I knit some chickens, posted the pictures, and it was a chicken free-for-all as people reserved the chicken that they wanted.

Here they are, the first chickens looking for a new home.

Four chickens were grabbed right away. Then the problem arrived. One of the members of the board wanted the little raspberry and grey chickens, even though they were already adopted out. The words “those chickens are gone” did not work. She absolutely had to have those chickens. It was a close thing, but I did have enough yarn left over to make the two new chickens.

When I sent her the pictures of the finished chickens and told her they were done she was greatly disappointed that I hadn’t also made a black chicken that we had mentioned while she was debating her options. (Listen, she decided on the two chickens instead of that black hen, so this was a shock!) I told her that I didn’t have the yarn to make that chicken in the stash. She told me that she would buy the yarn. I was like… NO!!! Please do not buy me any yarn!

Overarching mission: Knit Out the Yarn Stash Before I Die

Which has kind of been on my mind since my heart is kind of acting up right now. I am having sudden attacks of extreme breathlessness with chest pressure and dizziness. My oxygen levels seem to be okay, but my Fitbit has been sending me alarms when it happens. My fatigue has gotten much worse and it kind of hurts to breath sometimes.

The really crazy Fitbit shot with lots of peaks happened when I tried to knit a chemo hat on my little knitting machine. I mean, making hats while trying to control the cats is stressful enough, but the constant Fitbit alerts are just piling on at this point!

See the quality help that I’m getting while making the hats?

I seem to do much better if I wear oxygen while working with the machines, and I get fewer alerts while working on the smaller knitting machine making fingerless mitts.

So, it was a week of internal conflict. The lady who wants a black chicken is still not happy. My heart is not happy. My yarn stash is not shrinking, and somehow the joy of knitting chickens is gone when I have to make them in the exact colors that other people want. It is a chore when I don’t get to be creative, especially when I know that the chicken is going to someone who just wants a chicken, as opposed to someone who needs a chicken.

Hannah: On Friday the Mother of Cats pulled herself together, reset her priorities, and took some action!

Friday morning, I woke up, made my latte, sat outside with the cats, and decided to push the tiller over and return to a course of true north. I will remember my overarching mission statement, and I will do the things that help other people like me: people with chronic conditions that are isolating and mostly invisible to others. I will spend my time doing the things that feed my own creative spirit and my need for a sense of purpose.

I emailed my rheumatologist to ask if she would like fingerless mitts to give to other rheumatology patients. The answer came back in less than an hour: Yes, please!!!! I have my purpose again, and knitting out the yarn stash is back in business.
I emailed my cardiologist to let him know what was happening and attached the Fitbit pictures.
I took down a sweater (La Prairie) that has been languishing for months and started in on finishing the first sleeve. Gosh, it is going to be cute. Time to knit for me again!
I packed up the chickens to deliver to Frayed Knots. Those chickens are the last ones that I will knit for people who want chickens.
Saturday, I handed the chickens over to the head of Frayed Knots and asked her to please explain to the lady who desperately needs a black chicken that I’m done knitting them. The words I used were, “I’m not in the chicken knitting business, I’m in the emotional support business.”
I then sat with another member of the group and helped her knit her way through her first chicken. Suddenly, two other people wanted to learn. Yay! I am there for them!! Eventually, I am going to get some chickens into infusion centers for the patients!!

I have two little bracelets on my wrist with the Fitbit.

What was it that helped me pull things together Friday morning while drinking my morning latte? Those two little bracelets on my wrist in scleroderma teal. The little silver spoon was given to me by another patient, and it symbolizes the balancing act scleroderma people go through to manage our fatigue. We are “spoonies”. I need to remember to be ruthless about managing my own energy and resources. The teal beaded bracelet has a silver strip that says, “Remember Who the Fuck You Are“. Yes. I need to remember to not let other people run me over with their needs, because… limited resources. I need to set my own priorities with my limitations and needs in mind. I also need to remember to be brave, to face down the monsters, and to let my doctors know when new symptoms appear.

Just like that, I found my way again.

True North.

Chickens are taking flight…

It has been kind of busy lately at Casa Hannah and the Coalbear. I’ve been meeting people for chicken hand-offs every few days. I built a new coffee table, worked some in the yard, and then there is the heat. Ugh. The heat. We’ve been trapped in a heat dome for days, breaking records day after day, and the cats and I are all suffering a little with it. It is harder to breath in hot air, but my joints are curiously okay with all of this. I stay outside until noon each day letting my joints bask in the heat, but predictably, the cats abandon the deck/catio long before then. I find them stretched out on the cool tile of the kitchen when I come in, waiting for their tuna. The cats are absolutely over this heat!

Hannah: Maybe it is a little cooler in here…

Before I talk about the yard and the heat, let’s talk about the chickens! I’ve been meeting up with people for a chicken handoff all week, and these chickens have all flown away to their new coops. Here are the chickens that left this week:

That’s right. Five emotional support chickens flew out of here, and tomorrow I hand off another teal chicken knitted to match the one in the picture. My favorite ESC in the whole bunch went to my son: it is made with handspun yarns from sheep that he and I met when we worked a shearing day for the Rocky Sheep Company years ago.

The black/grey marled yarn is from a sheep named Petunia, and the jet black is from a sheep named Clint (Black). I used some Malabrigo Rios for the red bands because it is too darn hot to dye yarn right now! Isn’t this a spunky looking chicken?

Yesterday I cleaned up and sorted out all of the yarns again, and I’m ready to launch into more chicken knitting just as soon as I finish the chemo hat for a scleroderma patient participant in a CAR T-cell therapy clinical trial in Seattle: that needs to go out the door this week. Whew. Lots and lots to knit. I feel pretty motived because a thank you note was emailed to Frayed Knots by a cancer patient thanking me for the “wrist warmers” that she received. I think that she must have been given two PICC line covers, but that note made me realize that I need to be even more productive. As if to nail home the lesson, a couple of the people that I met up with this last week mention how much they struggled with cold and painful hands. Yeah. I need to get cracking on wrist warmers.

I bought a cute little knitting machine that is perfect for churning out wrist warmers!! This is the Addi Express Professional Knitting Machine, and it was on sale. Yay!!

Okay, I bought a big knitting machine that will make hats too. I need to have some way to use up all of this yarn that I have stashed away, and now that I am knitting chickens like crazy, I feel bad that I’m not producing hats and stuff for Frayed Knots like I was. Hopefully, these machines will let me step up my game some.

Hannah: Mother of Cats!! Talk about how hot it is and mention all the birds in the yard!!!!

Okay Hannah: back to the heat. For some reason the potted flowers on the deck are doing exceptionally well in the heat, and the yard is full of life. I’ve been making an effort to keep the water trays full, and the bird feeders have become quite popular. Look at what the flowers have been up to:

The single flowering spear in the middle is the Spanish Lavender finally starting to bloom. I’d almost given up on it, but both plants have suddenly sprouted those buds. All of the potted roses are covered with blooms, and the other lavenders have all started a second blooming. There is so much life out in the yard I replaced a window screen so Hannah can spend the early evenings watching for bunnies. (Why did it have to be replaced? One word: Mateo)

In the mornings the cats and I hang out on the catio watching the wildlife. Here’s the view from behind the chicken wire:

I especially like the blue jays that are hanging out in the yard, but there is a constant line-up for the hanging feeders. So fun. Cheap cat entertainment while I’m drinking my morning latte out on the deck/catio.

Hannah: Finally! Today it started to cool off.

As Hannah has pointed out, the heat breaks today, and it will be closer to normal temperatures for the rest of the week with rain possible each day. I’m hoping that this is the Colorado Monsoon arriving at last, certainly my lawn is hoping that there will be rain on the way.

Bye everyone. It’s time to fill the bird feeders again.

Note: Who’s getting these ESCs? My family, of course. Several have gone to systemic sclerosis patients. One went to person who retired earlier than she had hoped to, and another went to a person coping with a serious genetic disease. Two people are struggling with anxiety. One to a cancer survivor whose chemotherapy triggered scleroderma. I still haven’t gotten any chickens knitted for the infusion center…

Must knit faster!!

The Scleroderma Chronicles: A Decade on the Little Teal School Bus.

Here it is again: World Scleroderma Day.

June 29th is World Scleroderma Day. In Australia sunflowers are used as a symbol of scleroderma. Almost everyone uses the color teal for scleroderma.

I used to be a high school biology teacher before I became a scleroderma patient, and I took my students on field trips sometimes. We would all pile on the bus and off we went on one adventure or another: into the mountains for an ecological assessment, or to the Natural History Museum for an anatomy lesson, or a visit to a biotechnology center, or even off for the weekend to study for the Biology AP Exam. It was always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.

Lately I have been thinking about my illness as a ride on a little teal-colored school bus with a crazy rainbow striped zebra behind the wheel. That dang scleroderma zebra is careening down the road on its way to an unknown destination just over the horizon, and would you believe it, he keeps stopping to pick up more passengers along the way.

Don’t make fun of my bus! I changed the colors on some clip art that I found, and putting a zebra behind the wheel was beyond me!! Use your imagination… the zebra is braying hysterically while driving the bus!

When the bus stopped for me, and I stupidly jumped on board, I only had a few symptoms. I had some trouble swallowing sometimes. I had GERD. I suddenly lost circulation in my fingers if I got cold. Speaking of my fingers, they were pretty fat and puffy. I had lots of red blotches on my face, and the skin was pulling tight. It was hard to open my mouth wide…

Still, I was feeling pretty hopeful as I jumped onto the bus. “This will be fun!” chortled the scleroderma zebra. Bad zebra, bad!! Before I knew what was happening, that dang striped miscreant had pulled the bus over, opened the door, and couple of little demon passengers had hopped on board: kidney disease and gastric complications. What kind of an outing is this… have you ever heard a zebra laugh?

Bouncing down the road, suddenly screeching to a halt periodically to pick up a new passenger, the zebra continued the crazy outing in the little teal school bus. The little demon passengers kept piling into the bus, and those little monsters even started to sing “the wheels on the bus go round and round…” while laughing and clapping. What kind of a field trip is this, anyways?????

The demons all wore little nametags:

Gastroparesis
Pericardial effusion
Chronic respiratory failure
Diastolic dysfunction
Pulmonary Arterial Hypertension
Interstitial Lung Disease
Heart Failure with preserved ejection fraction

“STOP THE BUS!!!!” I shouted at the zebra! “I absolutely did not sign up for all of this sh*t!!!!” Nope. Evidently there is no stopping the bus. Ten years on the road, and we are still on our outing. Somehow some extra demons that don’t even wear nametags snuck onto the bus, but they are certainly annoying as they are making all my tendons hurt and what is up with all this edema!!!! Did I mention the fatigue? Always, always there is fatigue. That fatigue demon is sitting on top of the bus blowing raspberries at all the other people on the road…

It has now been a decade for me on the little teal school bus: always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.

I learned about prioritizing and not worrying about things that haven’t happened yet. I learned to advocate for myself, and I have maneuvered myself into the care of some great doctors. I have learned to build for myself a network of supporters. I pretty much have lost interest in making money, but I’m highly motivated to help others. I’m keeping notebooks and collecting souvenirs while on this field trip, and to be frank, it is the outing of a lifetime. Believe it or not, I’m now singing along with the little demons on the bus with me…

The wheels of the bus go round and round… and the zebra is still laughing its head off… and I’m okay.

Happy World Scleroderma Day.

Note: Scleroderma (systemic sclerosis) is a rare autoimmune disease that is chronic, progressive, and often fatal. It has three main hallmarks: damage to blood vessels, the development of autoantibodies, and subsequent scarring of tissues and organs. Right now, while there are many excellent treatments emerging to handle the serious complications due to the underlying disease (like my pulmonary arterial hypertension and interstitial lung disease), there is no cure. You can learn more about scleroderma and systemic sclerosis in the links below.

The Scleroderma Chronicles: June is Scleroderma Awareness Month

I plan to shine like a sunflower this month.

My local garden center had sunflowers for sale.

I am still thinking about resiliency. I went for a drug infusion a couple of weeks ago, and the lady in the chair next to me and I talked about what resiliency means. She is a liver transplant recipient, and she is also taking the immunosuppressant that I take to control my systemic sclerosis. Like a lot of patients in my scleroderma community, she has had to roll with a series of escalating complications tied to her original liver disease. We both now have osteoporosis, walk with canes, struggle with anemia, and are on a lot of drugs. We laughed about the canes and drug side effects: we’re still here, we crowed. Unlike me, she never checks for drug side effects or interactions; if she knew about them, she figured that she would just worry and imagine she was developing them. Instead, she just cruises along and if something comes up, she contacts her doctors.

Resilience.

Welcome to Scleroderma Awareness Month. I’m spending the month organizing my thought about resilience into some type of logical order. I have a Word document going with an organizational table, a ton of links, and everything scleroderma in it. It will be good for me, I think.

This is a pygmy sunflower. How cute it that!

By the way, my new friend also wants an emotional support chicken.

Welcome to June.

The Scleroderma Chronicles: Resilience

I’ve been thinking about resilience today after this graphic showed up on my Facebook feed.

What is SPIN you ask? It is the Scleroderma Patient-centered Intervention Network.

I’m pretty sure that I was one of the patients in this study. Certainly, I was a participant in a SPIN clinical research study during which I filled out lots of questionnaires about my illness. The focus of the project that I was enrolled in was to see if online educational videos about scleroderma, possible interventions to help with the progression of symptoms, and information about resources could help patients in how they coped. I was tracked for over a year to see how I was doing. How was my pain? How was my sleep? Was I depressed? How severe was my disease, and how did I feel about that? Did I have issues with anxiety? What were my scleroderma-associated complications?

Not surprisingly, the study referenced in the graphic found that they could break patients into 4 groups based on the severity of their disease (Low -> Very High). They found, for the most part, as patients dealt with an increasing disease burden, they coped less well and struggled with depression and anxiety more.

Except for one group of outliers. They had a pretty significant disease burden, but they were not depressed and didn’t struggle with anxiety. They kept rolling with the punches and finding ways to flourish even within the eye of the storm, securing for themselves a better quality of life than others facing the same challenges. I’m pretty sure that I am one of the people in this group of outliers. I remember that I reported that I was having lots of trouble with pain and sleep disruption, but no depression; my current battery of scleroderma-associated complications should put me into the High disease group. Here is a paper where the researchers further investigated the association between disease burden and mental health and resiliency.

I bought myself little roses last week. Look at how cute they are! They are under a red light, but you can still kind of see that they are a peach color.

So, the big question that the researchers are now pursuing is what determines resiliency, and how can these essential coping skills be conferred to other systemic sclerosis patients through training and support.

So, what is resiliency? That was the big question of the day for me as I worked out front weeding a garden. Working outside is now hard for me, but I dragged out a little chair to sit on, put my tools into a crate that was easy to push, and I slowly worked my way along the front walk cleaning up my garden and pulling out weeds. I had to take breaks to pant from time to time, but by the time I was done the gardens looked great! The weather was perfect, there were lots of birds, and one of my neighbors had music playing while he worked in his garage. After a little break on the catio with the cats (coffee and a lemon bar time!!), I strapped on my portable oxygen concentrator and mowed the front lawn. I’ve had a hard week, and I struggled to get myself outside to work in the yard, but by the end of all of this I felt much better. You might even say I felt happy.

Look at how nice the front pot of flowers is looking! I bought a new rug to put by the door onto the catio, Amazon delivered it today, and Hannah moved right in. Yay! Take that scleroderma!! I win the day!! I am happy!!!!

So, what is resiliency? I’m still stuck on that question. I’m pretty sure that it is a state of mind that allows people to focus on what can be done instead of what has been lost. Resiliency allows people to embrace their changing circumstances and effortlessly employ life hacks to get things done while acknowledging that other things are now too much. It must have to do with an ability to name the monsters, stuff them into a box, and put them on a shelf (in the back of the yarn stash) while activating self-advocacy. It must require faith that you will be able to cope with scary things when they come, while still recognizing that you are in a difficult situation. It must require support and resources. I think it has to be an internalized quality: resiliency gives you the self-confidence and self-worth that’s necessary to face down medical authorities and to ask for ~~demand~~ help and answers.

I look forward to what these researchers find as they continue looking at the phenomenon of the outliers: patients dealing with a severely debilitating and isolating rare disease with grace.

I kind of think that they will discover that these people have engaging interests that allow them to have a sense of accomplishment and purpose. I bet that they find that they have pets and people that they love. I bet that they produce something of beauty in their lives. I am almost certain that they will find that the outliers have found ways to communicate in a positive manner with others about the challenges of life with a progressive, and often fatal disease.

Why am I resilient? I have cats. I have yarn. I have curiosity and lots of resources to chase it. I have purpose as I produce donated items for others in difficult situations. I have roses. I have people who love me, and I have people who read my little posts about coping with life on the down slope of systemic sclerosis.

Thank you for being part of my resiliency system.