The Scleroderma Chronicles: Carrying Light

You know, I think that synchronicity is a real thing; you just have to pay attention to what is going on around you. Sometimes, if you take notice, the world hands you just what you need at that moment.

Scleroderma has been kicking my butt lately. Having improved dramatically over the summer and sailing through my heart/lung testing last fall, my doctors were pretty upbeat when I reported worsening symptoms while visiting them in late winter. They ordered some testing, but they were also very reassuring.

A week ago I arrived at a Kaiser facility bright and early for a routine echocardiogram and 6-minute walk test. The echocardiogram did not go well (usually they don’t hurt, and what was up with having to pause so I could pant a little to catch my breath…) and I was in the red zone (the pulse oximeter starts glowing red if your oxygen drops below 90%) after a minute of walking. The test was halted after 3 minutes, and the concerned nurse walked me out to the elevator.

Ugh. Not good, little BLZ, not good. Refusing to overreact, I went to my favorite yarn store on my way home, bought some great yarn, and then hit Starbucks by my house. It was a bright, blue day and I headed out to the deck to knit.

I took this picture of Hannah. Look at that bright, blue sky!

Do you know the quote by Elizabeth Zimmerman that goes “Knit on, with confidence and hope, through all crises.”? Yep. That is a quote to live by! I cast on a new hexagon for my blanket and started knitting. I felt myself settle inside, my breathing steadied, I began to process what had happened, and my anxiety faded away. Scleroderma is a monster, and by the time I was casting off the hexagon, I was ready to once again face it down.

This post had appeared in my knitting group on Facebook from Michelle Obama a few days before:

Well, look at that: Michelle Obama is a knitter! Yay! It looks like she also knows about the Zen of knitting and the ability it has to bring calm and purpose to a simple activity while you reflect upon and process problems large and small. I knitted every night to finish my teaching days. I knit in hospitals. I knit in meetings. I knit just about everywhere I can, and I especially knit to deal with the rolling shitshow that is my chronic illness. I went and bought Michelle’s book.

Thursday morning the results from the echocardiogram were posted and a couple of hours later my cardiologist called me. I was knitting and ready for the call.

For the first time the words stage 3 heart failure were used in the discussion with my doctor. My pulmonary pressure is higher than ever before and there is more fluid around my heart. It is not clear if my symptoms are caused by worsening pulmonary hypertension or pericarditis, but the only way to sort this out is to go back into the cath lab and directly measure the pressures with a right heart catherization. It may be both. I will need a different treatment regimen. An emergency referral was put in and tomorrow I’m heading back to the hospital for the procedure. This is what happened the last time I did this.

My pulmonologist, who works closely with my cardiologist and rheumatologist, saw me on Friday for a lung function test and office visit. My lungs are hanging in there, but my ability to diffuse oxygen into my bloodstream has dropped significantly. I told him about the upcoming trip to the cath lab, and he started checking those test results. I’m not going to lie, it is a little alarming when your doctor says, “No, no, this is not good. I am not happy with this at all.” More testing has been ordered. He emailed the other doctors on the team to start the discussion about what changes should be made with my meds.

I took this picture of my new Goldwing sweater in his office the day that I met him. If you are going to scary appointments, armor yourself in your favorite knits!

This weekend I started reading The Light We Carry and was amazed that it starts with… knitting. Serendipity strikes!! Michelle Obama began knitting at the start of the pandemic as she struggled with the lockdown: grief, isolation, loss, and everything else that happened in that time. It became an important vehicle for processing, recovery, and perspective for her. The daughter of a father with MS, she is very aware of disability and how it absolutely impacts how someone like me can view myself and the rest of the world. She talked about using tools such as the cane that her father needed to empower ourselves to deal with what comes our way. Her book appears to be a toolbox of different strategies to cope with the challenges in life.

For the first time since all this started happening last week, I cried. This book is absolutely, positively, what I needed to read right now as I pack my bag for the hospital and prepare for what is coming my way in the upcoming days and weeks. It’s like someone could see right into my heart and lit a light for me. I will carry that light along with its warmth and glow tomorrow as I join my doctor and the pit crew in the cath lab. Whatever happens, I am positive, I will glow, and my light will shine.

So, Michelle, whatever can I show off as a favorite knit? Every single item that I cast off my needles has left me with a sense of purpose, accomplishment, and fed my creative needs. Knitting helps me cope with adversity, plan my day, and work through problems. Knitting delivers calm in a time of crisis. Knitting allows me to deal with an unpredictable autoimmune disease that delivers an uncertain future. Knitting connects me to all the knitters in the past and provides gifts for others as I pay forward. It is essential for my being and a vehicle to connect with others.

Here are some things I’m really pleased with: Goldenfern, a knitted copy of a beloved (and lost) cat, baby booties gifted to a neighbor knitted from a pattern handed down through 4 generations of my family, the hats and PICC line covers that are donated to Kaiser infusion centers in my area, and Mando (and Grogu) mitts for a knitworthy niece.

Tomorrow I’m wearing arm warmers and knitted socks into the cath lab. Take that, scleroderma.

Behold, I carry my (knitted) light with me!

Did you wonder what a BLZ is? That’s me, the Blue-Lipped Zebra!

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.

22 thoughts on “The Scleroderma Chronicles: Carrying Light”

  1. We’re all right there behind you, Marilyn.
    How super that it was an Obama book to provide such .. such sustenance ! Far as I’m concerned, that pair represent the very best of humanity.

  2. Many hopes that you get good results from tests and treatments, Marilyn. Very good to learn that Michelle Obama also likes knitting.

  3. I’m thinking of you and hope the tests results are better than expected. I also hope you have a pattern that brings you joy to knit and a project in your purse that makes you smile.

  4. Sounds like you’re going in well-armed with a good medical team, your knitting and favorite/lucky knit pieces, and Michelle Obama all working for you. Me, I have a lucky purple shirt I always wear, and an unshakeable faith in doctors (my dad was a doctor). Wishing you all the best tomorrow.

    1. I have the best care team ever, and I was rocking my raspberry clogs when I arrived for the procedure. πŸ™‚ It went well, my doctor told me that I did great, and the results weren’t as bad as he feared. Yay for positive thinking!!

    1. It went well, the results weren’t the worst-case fears, and I’m home recovering with the fabulous kitties. I still miss MacKenzie… he was really a character and a once in a lifetime cat.

    1. It all went well and the results were encouraging. I’m getting more testing in another couple of weeks and then hopefully my team can come up with some new treatment options.

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