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.

Cute fingerless mitts, right?

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.

Hannah: I always remember who I am!

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Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

23 thoughts on “The Scleroderma Chronicles: True North”

  1. There is a very happy ending to this story, Marilyn – for which I am both glad and relieved.

    Relieved because the early part had me wanting to take up my studded cudgel and get over there to Colorado to do a number on those demanding women. Fuck ’em !! I would very much have enjoyed beating them about the body with my cudgel. But fortunately I didn’t need to because you did it yourself. GOODONYER !!!!!

    I so often wonder what makes some people see themselves as entitled to whatever they want …

    Your ESCs have been really super – easily the best of all that I’ve seen. But if their time has come, then so be it. You MUST do what it suits you to do … I mean, what you really, really want to do. It don’t matter a jot what you knit: whatever it is I know it will be both beautiful and useful.

    Like your spirit, Marilyn …

    1. You know, I was really dismayed when several people wanted chickens, but the truth of the matter is these ladies are spending their own time and money to make chemo hats and blankets for others who are struggling, and they all contributed to the operating fund of Frayed Knots, so I decided that I was happy to knit a few for them. The problem was the lady who doesn’t understand my personal situation and is kind of acting like I am an Etsy shop and if she has the money, I should make her the chicken. Um… that would be a big NOPE!! Did I mention that she is a lawyer? She is really helpful in navigating the process of becoming a non-profit organization, but I personally am not a fan, and she is not one of the knitters. Maybe one of the other ladies will make that chicken for her, but I need to refocus on myself for a while. The reason I asked the head of the group to talk to her is I’m hoping that she will explain my health limitations to her. Also, I think that she will go ahead and make her the dang chicken!!

  2. Just reading about some in your knitting group metaphorically fraying your knots raised my blood pressure and caused me vicarious anxiety that must’ve been nothing compared to what you were going through. I’m so glad you solved the problem the way you did. I had to wonder if the childishly selfish woman who demanded the black chicken wanted it to match her heart.

    The dusty mauvey-pink knitting that Hannah was “helping” with is lovely. May your days be filled with creative enjoyment and a more understanding knitting group when next you meet.

    1. I do need to remember that the stress is something that I am generating internally by not setting boundaries sooner. It’s hard, because I don’t want to make an issue about my health, but in truth, that is the problem!
      That pink is my favorite color, and I originally bought the yarn to make some baby booties. Now it is two chemo hats! I hope that the recipients will love the color as much as we do!

      I do have to say that I love this group. There is music and laughter, and they are the nicest people ever. The pushy lady is a lawyer who is affiliated with the group, but not one of the actual members.

      1. You tried to set boundaries; however, the road grader who is only an affiliate member chose not to respect those boundaries. The fault lies with her. Perhaps she’s used to getting her way with juries.

        I don’t have the same health issues you have, yet my health was momentarily affected by reading about your experience.

        It’s too bad that the affiliate member can’t be asked to resign, but then she’d probably sue you all for discrimination against a certain type of spherical buster, as some people are known.

      2. To be fair, she is a great help and source of information as Frayed Knots becomes a non-profit organization. I think that she doesn’t understand that I am just a knitter in the group, not someone running a chicken-knitting business and I am NOT selling chickens!!! I appreciate her providing free legal services to us, but she is over the line at this point.

        Thanks. All the supportive feedback has really strengthened my resolve.

  3. Wow!! Huge congratulations for making it out the other side! So easy to get detailed by other people’s needs. Enjoy making the mitts. Timing is perfect to finish your sweater.

    1. It is just now starting to cool down here in Colorado, and if I hustle I will have the sweater ready to wear when the first snowflakes fly. It really is a nice sweater, and I am happy to get back to it.

  4. Well of course that’s what kitty claws are for — adjusting knitting. Who doesn’t need an extra paw now and then? As for the woman who demanded a black chicken, she can, as we say, take a long walk off a short pier. Rule Number One for a peaceful life is to eliminate/avoid toxic individuals like her. Onward. True North!

    1. Exactly! That’s why I asked someone else to explain why I can’t knit more chickens for her. I am unwilling to spend more energy on her!!! She is treating me like a shop owner, and there is no way she is entitled to that attitude. True North forever!!

  5. Goodness me, I guess some people don’t realise what selfish *beeps* they can be. You gave that more energy than I would have given to that woman’s demands. Glad you have cut the cord now and prioritising what you’ll enjoy doing and know will be appreciated. I enjoy making my lampshades until someone asks for one with specific features or to match another I’d made in a different size. Then I don’t enjoy it at all. Take care x

    1. It is exactly what you said. If I have to make a custom chicken (or knit) that will be exactly like what the person wants it saps all the joy out of the project. It is even worse when it is about making something that will be exactly like what someone else got, which is what happened in this case. I’m used to the phenomenon where people don’t know what they want until they see examples, but to demand replicas of “one of a kind” creations from the depths of my yarn stash is just unreasonable. I’m taking care of myself and moving on!!

    1. I’ve been struggling health-wise and it has been hard to keep up with the blog. Hopefully now that I’ve finally contacted my doctor and set some chicken boundaries I will do better.

  6. That was frustrating enough to read, I think my blood would have been boiling if I’d actually gone through it! But I would have just simmered in people-pleaser resentment so I’m very impressed with your boundary setting.

    As pretty as they are, I hope all future ESCs will give you less stress and more enjoyment than those two did.

  7. I’ve been going through an unpleasant time now, being laid off (again) after 10 years the year I turn 65. No car and I recently tripped walking and slammed my knee into a concrete paver. I tripped a second time, fell and bumped my nose, causing my wire frame glasses to scrape my nose. What I enjoy and I’m good at is not marketable. Being physically sidelined didn’t help. I decided to knit the vest I wanted for warmth. Somehow knitting has become my stabilizer. I don’t know exactly how, but it works for me too. That is, when my cat Molly stays off my knitting. It helps me get on with life. I developed a tiny little indoor garden as well. You’ve always had a place in my thoughts after I found your blog a long time ago. I’ve admired your courage. I’m glad you’re being tested for afib. It seems there’s several treatments for it now. I hope you feel much better soon. Keep on knitting!

    1. Oh, no. Too many things going wrong at the same time. Falling in a way that ended with your nose scraped (and I hope the glasses are okay) was just piling on! Knitting really has been the thing that helps me the most when the world is just falling apart, especially if I can listen to an audiobook at the same time to keep my mind occupied. I have heard of studies that show that it lowers blood pressure and reduces anxiety. Certainly, that has been my experience.
      My indoor garden is now full of roses and lavender at the moment. It makes it so much easier to do my physical therapy with the lavender in the room. I also have aphids, but I am attacking them with Neem oil and so far I think that I’m keeping them in check.
      Keep on knitting, my friend. HUGS!!

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