The Scleroderma: The Blue-Lipped Zebra Report!

I’m thinking of myself as the “Blue-Lipped Zebra” these days. Let’s just call me the BLZ for short. You know, a rare breed of difficult patient who is ornery, persistent, and stubbornly insistent on getting straight answers. I’m trying to not use that zebra voice, but if pushed I may whip it out. I’m going after all my doctors to get to some explanations about my panting, blue-lipped, exhausted current state of being. I made myself promise to keep my internal dialogue under control and to not get pulled off topic. Sounds like a good plan, right?

Whew. It is only Wednesday and I’m pooped! I have talked with or met with three different doctors and scheduled 5 different tests. I also made repeat appointments to get back to these doctors after the testing is done. I went into this determined to do a better job coordinating with my doctors and to shift the conductor role to my new rheumatologist. I’m reflecting on what’s happened so far and what my next steps are, and I’ve decided to share with all of you.

Before I tell you about my medical adventures this week I want to show off the monster orchid. It now has 5 blooms open and it looks great!! Isn’t that an amazing color?

Prologue: I have been struggling with shortness of breath, extreme fatigue, and feeling dizzy/faint. My lips frequently look blue. The itching is insane, and what is up with these rashes? I have more recently developed abdominal pain in the area of my spleen. After initial testing my internist has diagnosed secondary polycythemia.

Act 1: The Internist

This was my first phone appointment. My internist is the doctor who diagnosed me with secondary polycythemia, which is a condition with too many red blood cells. The high cell count, in my case, is now presumed to be due to an underlying problem involving my lungs or heart; since lung and heart damage is common with systemic sclerosis that makes a lot of sense. We talked about my gene test results (I do not have the genetic mutation that would have caused the more serious form of polycythemia, which is good!) and planned my call with the pulmonologist. That’s right: I got some coaching from my internist! I agreed to send her an email about what happened with the pulmonologist and rheumatologist after I met with them, and she assured me that she would order any testing that the other two doctors did not. That’s right – I asked her what testing I should ask for. I love this doctor!!

Act 2: The Pulmonologist

Well, this didn’t go the way I thought this would… good thing I got some coaching. It started out with this doctor saying that she didn’t know what I expected her to do over the phone when she hadn’t seen me in her office for over a year. (She fussed at me last time for coming earlier than a year. I tried to make an appointment, but the nurse insisted it would be better for me to make a phone appointment before I saw the rheumatologist… ugh!!) I explained the situation to her, and she immediately said that she didn’t agree with the diagnosis, and that she didn’t think that my rbc count was all that high. <The BLZ was pretty disgusted by this and wanted to blurt out that the diagnosis wasn’t open for debate, but I throttled it into silence…> After redirecting the conversation to my symptoms (you know, ending up on the floor panting for air after a little vacuuming…) she did agree that there was probably an underlying problem driving the elevated rbc count and it would be good to order up some tests before I came to see her in her office.

Sigh. Why is this so hard?! I wondered if we had just been talking at cross purposes about the same thing. <The BLZ wondered why I had to keep battling for routine testing when my diagnoses required it. Whatever.> The tests were ordered and I agreed to make an appointment to see her in her office a few days after the testing was completed.

Act 3: The Rheumatologist

Finally, finally I have landed in the rheumatologist office that the BLZ has longed for. This doctor felt that the lung testing was absolutely warranted, and that if nothing came up she would go right for a cardiologist referral and heart testing, and a hematology referral also if needed. She kind of thinks that this is my heart, but it is good to get the lung testing done first. <The BFZ is now bucking around… happy for action, but a little scared, too.> She reassured me that the tests that were already ordered were exactly the ones that she would have ordered, but they were just the opening round. She mentioned a test that the pulmonologist has refused to order, saying that it is the only way to get accurate information. Yay! Then she did the exam and reviewed the notes on my orthopedic referral since I still can’t walk and I’ve developed more tendon issues in my foot. “Why hasn’t there been a follow-up on this?” she asked. She ordered two MRIs to look at my hip and foot, and gave me the paperwork to get a handicapped parking pass. She also ordered blood work, told me to call her after the testing was done, and that I should be in her office again in 8 weeks. <The BFZ was stunned. Usually I’m told to come back in 6 months.> I have the scleroderma director that I’ve been looking for, people!!

Epilogue

I spent 5 hours over the last two days making phone calls, appointments, reading all of the medical notes attached this week’s appointments, and writing emails. Whew. Through the constraints of scheduling calendars I will be talking about my test results with the rheumatologist before I interact again with my slightly hostile pulmonologist. When I read the pulmonologist’s notes on our phone appointment it kind of smelled of “cover your ass” and the BLZ’s nostrils crinkled in disgust. After begging for inhaled steroids for a couple years, when I saw her last time she offered me a few months worth. Yay! I said. I wanted to check with the rheumatologist before starting them because I’m already pretty immunosuppressed, which I did, and the inhaled steroids were prescribed soon after by my internist and I’m using them right now. In the notes she wrote that she had recommended these steroids and I that I had refused. <The BLZ immediately noticed the nasty trickery with the verbs there…she offered and I deferred!> She also described my landing on the floor while vacuuming as “needing to rest while doing moderate tasks”. The BFZ is beyond disgusted at that. <Get a new pulmonologist, the BFZ barks!>

In between all of this I also got my newest pair of Snowshoe socks done! How cute are these? I knit them holding a wildly bright variegated yarn with a dark, inky blue single ply yarn. My yarn information is on my project page.

So, it was a pretty darn good start of the week. Tomorrow I head off to get an echocardiogram of my heart, and over the next week or so the rest of the testing will happen.

Coronavirus, be good and stay away from me!! I’m going to be in a lot of medical facilities for the next few days.

You all be safe out there!

The Saturday Update: Week 9

The local news station posted on Facebook this morning that there are only 300 days until Christmas. Why do they do this? Already, I am feeling the pressure and thinking about what I need to craft/knit/weave for this year’s Christmas.  I did take out the spinning wheel this week and got organized to do some quilting. So much pressure if you are a fiber artist/crazy person…

Knitting

I had a busy knitting week. It was so busy, in fact, that I already did a little posting about what I was up to as I worked out the swatches to knit another cat to match my son’s kitten Jonesy and ended up dyeing some mohair yarn in a crockpot. If you missed it, here is that post.

Last night I took the swatches up to my son’s place to match them to the real thing: Jonesy.

They were a big hit; Jonesy thinks they are a new kick toy. They are also a good match, especially the color that I dyed to create his stripes.

I got back to work on my Pebble Tunic later on in the week. It doesn’t look like I made a lot of progress, but I have connected the front and back and am knitting down the body of the sweater making some increases as I go. It is all mindless knitting until I hit the pockets in another 10 inches of knitting or so.

This yarn is just wonderful to work with. My project notes on Ravelry are here.
I also went back to simple knitting because… well, this is embarrassing… I snipped into my thumb with my scissors. My scleroderma hands sometimes misbehave, but this is just ridiculous!! Good thing I had a knitted finger protector on hand to hold the bandage in place and add protection.
I’m also finishing up the second snowshoe sock being created at DK weight by holding a wild multicolored yarn from Western Sky Knits with a single ply inky colored MadTosh yarn. The project notes are here.

This is a bittersweet project to finish up. It is the last one that my sweet boy yarn chomped/supervised earlier this week. I’m so glad now that I let him eat all the cookies that he wanted, tolerated all his knitting help, held and babied him when I wanted to do other things, and switched him back to his favorite food for those last few weeks.

MacKenzie was always a lot of help. If you missed it, my boy left me this week and I blogged about it here.
Garden

The best part of orchid ownership has arrived: the orchids left the craft room with its grow lights and moved into the living room to strut their stuff to the general public. Okay, it is just me, but it makes me so happy to have them out on display.

The miniature orchid with its darker magenta blooms joined the rose gold orchid on the china cabinet. Do you like that funky unglazed orchid pot? I get them at my local nursery and the orchids really seem to like them.
The Monster orchid is now on my coffee table where its lovely orange/pink bloom (there are more on the way) displays well with the plum furniture and the gold walls. Happy orchid, happy me!
Books

Well, I have settled into the most amazing book ever this week. I can’t believe how much I love this book. I bought it because Melinda of Knit Potion recommended it on her blog. Oh, my goodness!! I am so glad that she pointed this incredible book out to me.

<Disclaimer: I am a life long science geek and biologist. I didn’t always love plants, but now I drive people walking along with me crazy as I stop to take a good look at vegetation. I was thrilled when a slime mold emerged in the pot of one of my jade plants this summer. I’ve gone on workshops and field trips to forests, burn zones, and learned about the forest management strategies employed to maintain Denver’s watersheds. I think that it is absolutely reasonable to marvel over the mechanics of water movement through plants and the complexity of chloroplasts…>

I’m about a third of the way through the book, and so far it is a collection of stories about the interactions and meaningful relationships of different individuals with… trees! Sounds kind of strange and boring, but no, it is not! It is magical. I am hoping that the people catch up with each other to save the forest soon…

Here it is. I did take a break from the book and watched the movie Tolkien. Would you believe it – trees feature in this movie and Tolkien tells his kids to go talk to the trees. That’s it. Never underestimate the power of communing with trees…

Before you think that this is crazy, let me share with you a little tree story from my family. Starting her life over after tumultuous times and a painful divorce, my mother bought a trailer home and began to garden again. She grew amazing roses and boatloads of blackberries. She planted a tree. A Podocarpus Macrophilia tree, to be exact. She loved the tree, fed it, babied it, and eventually hung a bird feeder in its branches. She treasured this tree and it just thrived under her care. Mowing the lawn under the tree one day she began to realize that there was something wrong: abdominal and back pain. It was cancer. Years later, facing down her coming death she selected her burial plot and made all of her final decisions in a manner that serves as a pathway to me and all others who knew her. She chose a location with a beautiful view of the hills and canyons of San Diego, under a Podocarpus Macrophilia tree. The last time I saw her grave there were wind chimes and a small bird feeder hanging from the tree.

Never discount the importance of a tree.

Have a great week, everyone!! Read a little, knit a little, and garden like your heart can’t live without it.

The Saturday Update: Week 3

It was a really busy week for me: doctor’s appointments and testing, a meeting of my book club, a broken tooth, and… wait for it… hurricane force winds outside! I am so glad for my new heater and fence, people. I’ve been busy this week but focused mostly on small, portable projects as that was the kind of week I had.

Knitting

I am enjoying my new Snowshoe socks so much that I cast on another pair early in the week. The trick in these thick, squishy socks is that you can pair a soft 100% merino yarn with a hardy sock yarn that packs a good percentage of nylon. Having discovered how compelling the marled fabric is when you knit two such yarns together is, I dug through the stash looking for another pair to yarns to put together.

The purple yarn is Rockshelter Sock from Meadowcraft Dyeworks. I love the color, but this yarn didn’t work out in the project that I originally bought it for. The grey multi (Western Sky Knits Smooth Sock) was also bought for an abandoned project, but with its 25% nylon and muted flashes of color it was perfect! Together these yarns made a sock that I just loved!
These socks just flew off my needles and I’m wearing them right now as I write this post. My project notes on Ravelry are here.

The first night after I finished the purple marled socks I went to bed wearing them and thought about other possible pairings between yarns in my stash. One soft yarn, one tough. Two colors that will go great together. Ideally, yarns that are just hanging out in the stash wondering what to do with themselves…

The single ply merino yarn (Black Elephant Yarns) was bought years ago as an extra insurance skein when I was knitting a shawl. I did need some of the yarn in this skein, but only a small portion. What ever should I do with the remaining yarn? The red sparkly yarn was a Christmas-time special produced for my favorite LYS by Chasing Rabbits Fiber Co. and is nylon rich. Bam! Another pairing was born and I cast on.  My Ravelry project notes are here.

I’ve also been making some progress on knitting MacKenzie, but slowly as I need to work off the computer and it is the kind of project that needs a block of time and focused attention. Still, there is a cat emerging on my needles.

I’m currently using three mohair yarns and a grey/black fingering yarn to create his back with stripes. I am just beyond his front shoulders at the moment. With all of the mohair he is one soft, furry boy!
Garden

Things are happening in my little indoor garden.

Curses!! There has been a reemergence of mildew on one of the miniature rose bushes…
All of the miniature roses were treated with Neem oil as soon as I saw the mildew. By the end of the week they had appeared to be recovered and the bush with the original infestation was getting ready to bloom. Note to self: buy more Neem oil!
The other big news is that the Amaryllis buds from the bulbs that my sister sent me for Christmas are getting ready to burst open. Yay!! The only orchid that is currently blooming is the white one, but some of the others are gtting pretty close.
Books
I finished up a couple of books this week while I was knitting away on the socks. Doesn’t this one have a beautiful cover?

For some reason that I simply can’t understand every single book I pick up lately is about something that I don’t want to deal with at the moment. This one, which is about a life-long pairing between a cello and a gifted magician, seemed intriguing: there is a curse, a love interest, loss, grief, redemption and recovery. Sounds good, huh? There is also alcoholism, sudden death, suicide, and heart wrenching betrayals, too. Faced with a life of constant struggle as I deal with my chronic illnesses, I am personally calling a moratorium on books like this for awhile. I want some happy, fluffy books for awhile. Or at the very least, people not in the grips of self-destructive behaviors, mental illness, and bleak futures. I’m calling a pause on sociopaths and serial killers, too!

This is absolutely not a happy, fluffy book, but it was what I needed this week.

I’m a big science fiction geek. This book, the 20th in a series that I have been reading over 2 decades, is like the next installment in a Greek drama. The action is really slow: the book unpacks the events of a few momentous days and explores in minute detail the political, social, and familial events as our hero embarks on a diplomatic mission with the aliens that he serves as mediator/facilitator/interpreter for as they attempt to create an alliance that will consolidate power in a difficult region of the planet. It’s very formal. There is lots of analysis and consideration of intent in every action and decision. Forms, and the correct numbers, must be maintained at all times. Everything, and I do mean everything, is fraught with meaning. I love this series and can’t wait to get my hands on the next installment, but I know that it isn’t for everyone.

The Saturday Update: Week 1

Have you ever gotten to the end of a week and wondered what you had accomplished? Yep. Me, too. As a New Year’s resolution I’m going to try to do a weekly update every Saturday about all the little things that were going on that week. You know, all the stuff that has to do with yarn, books and my garden. Here’s the first update.

Knitting

I just made the best socks in the world! I’m not kidding, these babies are just great! I’m talking about the Snowshoe Socks by Emily Foden that I knit this week. What is nice about them, you ask? I’m so glad you wanted to know: they are heavier socks that are knit by holding two fingering strands together. One strand needs to have nylon in it, but the other can be a softer yarn like 100% superwash merino or maybe something with cashmere. I have a lot of yarns that I bought to feed the stash thinking that they would be great shawls or whatever someday. Right. Those yarns are still lurking in the stash laughing at me. I can now use them to make socks when combined with a tough sock yarn. Together the two fingering yarns make a marled DK yarn that blends through the sock as you swap in different fingering yarns. This can be a stash buster or you can just use 2 yarns that you love marled together. The pattern is simple and pretty easy to adapt if you need to. My project notes for this sock are here.

The navy and gold are yarns that I had left over from previous sweater projects. I hate yarn chicken, so I always have an extra skein of yarn. The light blue mix is yarn that I bought to feed the stash. A year later I’m still wondering what to use it with. Since it went with the other two yarns I decided to use it as the main yarn with the other two jumping in and out.

The gold yarn has some cashmere and both the navy and the gold contain nylon. The light blue multi is 100% superwash merino and could never survive as a sock on its own. This strategy allows it to become a sock by hanging out with the other two yarns. It’s kind of mysterious, but the resulting fabric is much better than a sock just knit from DK yarn. I think that the twisting of the two sock yarns plus the added nylon makes the difference as you knit.

Look at the cool fabric that is being produced by these three yarns in combo.
Here they are all finished up: hearty socks that are amazingly warm, soft and kind to my feet right when I need a little help to get through the winter.
In spite of gloves with mittens over them I lost circulation in my hands and feet while trying to get into the grocery store… this is Raynaud’s.

What’s up with my feet? Ugh. Where to start. I haven’t made too big a deal about it, but I’ve been struggling to walk for a year now and finally have transitioned from limping, to using crutches, to mastering a snazzy purple cane. The opposite foot to the bad hip has developed a slew of problems of its own and now needs to be babied also. My toes hurt and need to be cushioned. The fat  that people usually have on the bottoms of their feet is now gone on mine (thanks, scleroderma) and I’m walking on the bones of the outer side of my foot and they are not happy campers at all. I’m developing benign tumors in the big tendon on the bottom of my foot (the plantar fascia), and to top it all off I struggle with loss of circulation in my toes because of the cold. Not to worry, people, I am a knitter and these socks are going to be big helps for me in the weeks and months of cold weather to come. Bring it, winter, I am ready for you!! Note to self: knit more of these socks!!

Garden
The first orchid plant has started blooming! This is a plant that puts out lots of smaller blooms. Four more orchid plants have growing stems and those flowers will be larger. I can’t wait to see what the color of the blooms will be: you’d think I’d keep notes, but no, this is going to be an adventure. I’m pretty sure I’m in for purples and rosy gold blooms.

All of the orchids are thriving under the indoor growth lights that I bought for them last winter and I gave them more fertilizer and a spritz of Neem oil this week. I felt sorry for a couple of little roses that were still in the garage and brought them into the indoor garden. To thank me for taking pity on them they gifted me with white fly: those brats!! Everyone got sprayed with Neem and we’ll see if that does the trick.

Books
This is why my socks were completed in three days flat!!

I’m trying to listen to audiobooks more while knitting, and I started this one early in the week while knitting in bed with MacKenzie. Good lord! Don’t start this book if you don’t have time to put your life on hold while obsessively reading (or listening) it from cover to cover. It’s compelling. It’s horrifying. It’s best described as a psychological thriller that involves a cult-like psychopath, abused and abandoned children, a murder mystery, lies, poisons, inheritances, families lost and found, or a take home lesson to not let strangers come live with you. Okay, this is flat out unbelievable and more than a little disturbing, and the characters aren’t all that likable, but you can’t help feeling like, maybe, this could actually happen… I read this book for my book club and I can’t wait to go talk to some other people about it.

I’ve been thinking of Australia this week. If you are there, please stay safe. I feel awful complaining about cold while you are suffering through extreme heat and fire behavior. Hugs to all of you.