scleroderma – Yarn, Books & Roses

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!!>

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.

Hannah and the CoalBear: Chickenitis Explodes!!

Hi. I’m Hannah.

These big fat bumblebees have been coming to the little garden by the deck every single day this week. I just love them! They are so fat and slow. They are fuzzy and look just like a cat toy, right? They come right up to the wire to climb into the flowers, and I got my paw out and onto one of them this morning; he just bumbled off to another flower. These guys are awesome!!

The Mother of Cats is doing much better and hasn’t worn her wrist braces in days. She finished up the knitting on one of her Emotional Support Chickens (ESC) and then spent a couple of days sewing them up. One chicken was done Saturday morning, so she took it to her Frayed Knots knitting group to show it off to the other knitters.

Isn’t this kind of a sweet little chicken? Her colors look like the colors of the garden where the bumblebee hangs out.

The Mother of Cats wanted to show off the chicken because it has been a big hit with her scleroderma support group and at the Kaiser infusion center last month. Everyone wants a chicken!! Like… four of the members of her support group want one, and she figures that the infusion center should get a least a couple. The Mother of Cats is kind of thinking that lots of people who are having a hard time (like, the families at the Ronald McDonald House, or at other infusion centers) would like a chicken. Yeah. It was a good idea, but she lost control, and things went crazy really quickly… the chicken got passed around and people hugged it. And hugged it. One lady wanted to keep it. The Mother of Cats got requests for FIVE more chickens and was asked to think about teaching a chicken knitting class for some of the ladies. One of the ladies swore that she could get chickens sold at craft shows up north (in Boulder, Colorado) and the money could be used to buy items for the personal care packages that are created by the Frayed Knots volunteers. Another lady asked for the pattern so she could start knitting chickens too…

Yeah. A little out of control. The Mother of Cats now has a spreadsheet going with 17 chicken requests on it.

So, the Mother of Cats got cracking and sewed up two more chickens. Now she has three done and ready to go out the door. There are two more little ones knitted that need to be sewn up, but her wrist voted NO!

Today she wound up a lot of yarn (luckily, she had bought all the yarn earlier in the month…) and she is torn about what color to knit next. Maybe it is time to make a chicken that is knit in all solid colors. Should she use some fluffy alpaca? She still has some beads that can go onto another chicken. Whatever… she needs to just get to work knitting and somehow the chickens will all find a home, right? Obviously, the need for emotional support chickens is real.

Unless there are bumblebees. They are almost as good.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

I woke up to a text this morning: another request for an ESC. A pink one, please.
The pattern is Emotional Support Chicken, and it can be found in knit or crochet versions on Ravelry.
Here are the official portraits of the three chickens. I have to send the pictures out to people so they can pick their chicken.