Limited Systemc Sclerosis – Yarn, Books & Roses

Knitting after the Cath Lab

Hey. I know that I’ve been missing for a while (again). In my last post I wrote about my upcoming trip to the cath lab to get a right heart catherization. This procedure involves having a small sensing device threaded into your heart to check (in my case) the internal blood pressure. Normal pressure in the right side of your heart should be about 14mm Hg; mine had measured 44 mm Hg in an echocardiogram so my cardiologist wanted to get a direct reading.

Here I am, rocking my scleroderma symptoms along with the cath wound. Puffy hands, bluish nose and lips, tons of little red dots on my face… That bandage came off the next day and the entry wound healed right up.

The procedure went well. My pressure measured in the low 20s, which was soooo much better than my cardiologist feared. The number was higher than the last time I had a direct measurement, so my pulmonary hypertension has advanced, especially since I am now on medication to treat my condition, but I’ll take it! It was, once again, a really positive experience and I felt well cared for by all the staff. I was pretty exhausted, hungry, but upbeat on the drive home.

Then I went into a flare… I slept for almost the entire week after the procedure. Seriously, like 12 hours a night and a couple of naps. I had to go back onto daytime oxygen. My hair started falling out again. I was dizzy and exhausted. My joints really hurt. A flare.

This week I’m finally awake again and I pulled out the blanket that I’m knitting. I knitted more hexagons and measured the blanket on the bed. I went out and bought more yarn. I have the hexagons to add another row and the blanket is slowly growing…

I think that I’m going to need more yarn… this is the Nectar Blanket by Ysolde Teague.

I’m really happy with the progress of the blanket, but I have to admit that it is becoming a little boring. I dream of other knitting projects as I sew the hexagons together. I have a serious urge to knit a new sweater in some fabulous colors.

Look at this little topper sweater!! It is called La Prairie (by Joji Locatelli) and I seriously want this sweater. I want to knit in cool colors. Did I mention that I live on the edge of the Great Plains? I long to wind yarn and to cast on and to start knitting those waves and bobbles…

I broke down and bought this kit to knit the sweater online a few weeks ago.

The trouble is, I just have to dream and fuss about colors before I am happy. I’m not sure about the order in the kit yarn. I’m not completely a fan of the middle yarn, and I feel like the lavender should be in the middle. I’ve been digging in the stash and trying to image the finished product with other blends of color…

Here are three more spins on the yarn. I like the one on the left the most, with the yarn fading from dark purple to the light grey at the sleeves and bottom of the sweater, but I’m kind of interested in the middle and right versions. I have to ask myself… which version will have the most flexibility in the wardrobe? Definitely, it would be the first spin on the kit, the version with the light grey at the sleeves.

I also desperately want to buy yarn to knit a Soldatna Crop sweater, and some new arm warmers, and then there are those PICC line covers and hats to get done… Did I mention that I have been looking at more yarn online and dreaming of sweaters with lots of colors in DK weight yarn? I’m totally on a knitting drive, but my wrists are not on board with all this needle action. It could be that I’m not completely done with the flare…

Sigh. Guess I’ll just cast on another hexagon or two…

PS I’m still dealing with shortness of breath and low on oxygen; lung testing happens next month as my doctors continue to sort me out. 🙂

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!

The Scleroderma Chronicles: And Do You Exercise Regularly?

It has been an eventful week in big and small ways. I had been mostly in bed for most of a week as I struggled my way through two snowstorms with significant air pressure drops. Ugh. I had chest pain, coughing, heart palpitations, and more sleep than I want to admit to. Towards the middle of the week, I went off my immunosuppressant drug and the flare of my disease(s) arrived over the next two days. Ugh. So predictable, but still discouraging. I dragged myself together on Monday, double masked, and made it to the pharmacy where I had an appointment for a Covid-19 booster that afternoon.

Mateo: Do I need a booster too? Here’s my arm…

I have this really wacky sense of humor. The entire experience just kind of cracked me up. You see, I got the appointment at my local grocery store’s pharmacy. Here are some of the highlights:

I have had so many shots at this point that they had to use the back of my vaccine card. At this rate I will need an accordion-like pullout for the vaccine information in a few months.
- Why so many shots? I’m immunosuppressed. I went off my drugs this time to give my immune system a better chance of responding to the vaccine.
The staging area for the shot was at the Fritos display across from the pharmacy. Seriously, the pharmacist said, “Go stand with the Fritos and wait your turn.”
The shot was easy, peasy. I think that the syringe was spring loaded it was so fast. “Go walk around the store for 10 minutes before you leave,” I was told.
So I waved goodbye to the Fritos and walked around the store. Mostly I just looked at the empty aisles for the 10 minutes feeling sorry for myself. No milk. No Snapple. No cat food. No guacamole. NO GUACAMOLE!!!! Oh, yeah. Genius me scheduled the booster shot during a grocery store strike by the competing chain’s employees and this store was basically stripped of essentials by the descending horde of shoppers who didn’t want to cross the picket line. As they shouldn’t. But they could have left me a little guacamole, don’t you think?

I was able to get the cats a Boston fern to replace the palm that was chomped to death by… I wonder who could have done that? Hmmm…

I also got a Starbucks. Not the worst trip out of the house. I ended up with a sore arm and was so exhausted that I slept for 12 hours.

Today, 48 hours after the booster shot, I feel great!! The flare is gone. I haven’t felt this good in weeks. This happened to me the last time I got a Covid booster. I think that it must be the increase in antibodies or something; I’m so immunosuppressed that my gamma globulins are way too low (a medical condition that my doctors are just ignoring because I do have enough white blood cells). Maybe the boost in antibodies following the shot actually makes me feel better somehow. Maybe my white cell count goes up. It’s a mystery. I’ll take the win!

And in that winning mood I went to see my cardiologist for the first time since my trip to the cath lab last fall. I was a little short of breath but was walking okay when I got to the office. I received an EKG test and the nurse checked me in:

Nurse: “And do you exercise regularly?” (in a judgmental tone of voice…)

Me: “Oh, please. Let’s not even pretend that I am able to exercise!”

Nurse: “Oh. I’m so sorry that I asked you that…” We both started laughing, but I meant it! I am so over feeling defensive about being unable to exercise. In fact, trying to exercise with my condition was damaging my heart.

I also think that I had my snark on under my mask.

My cardiologist is freaking awesome. He asked lots of questions about how I was doing. (Face now mostly not blue. Yay! Some panting and chest pain, but so much better. I went up a couple of flights of stairs with no problem.) We discussed the fact that I don’t fit the usual diagnostic model for pulmonary hypertension but based on physiological changes consistent with PH and my dramatic response to treatment with a PH drug, he made the call and entered the diagnosis. The matter is now settled until new data comes along.

Exercise-induced pulmonary hypertension. As in, you look perfectly normal when you are on the table getting your lung/heart tests, but the minute you exercise all hell breaks loose in the blood vessels of your lungs. Fabulous. There is a really invasive testing protocol that I could be subjected to, but there is enough evidence now to establish the diagnosis without it. The diagnosis became part of my medical record today. At last.

It has been almost exactly 5 years since the BLZ began her journey to find help and answers. This has been really, really hard, but I made it.

We discussed the pros/cons of more testing. We talked about the risks and benefits of adding a second drug to the one I’m already on. We talked about who will take over management of my PH (he will) and how he will integrate with my rheumatologist. We talked about how important it is to be comfortable with “out of the box” thinking when dealing with a patient who is basically at the far end of the bell curve… in other words, a zebra. Oh, I like this guy!!

I agreed to start the additional medication which will be added to the one that I’m already taking. There will be more side effects as this second drug kicks in and I will be getting several phone calls to check on me as I start it. The plan is to try to slow down my progression before I develop full blown PH.

Next up: more testing to hunt for that dang hole in my heart. It’s like a snipe hunt, but so much less fun. As in, heart surgery anyone?