The Scleroderma Chronicles: The Blue-Lipped Zebra Goes On Oxygen

This week I finished up the pulmonary tests to see what was up with my lungs. This was pretty darn stressful and the poor BLZ was just besides itself with the trauma of walking into a major hospital to get admitted for outpatient testing.

This is my son’s kitten Jonesy, named after the cat on the Nostromo, the ship that accidently picked up a deadly Alien while answering a distress beacon on a strange planet… Jonesy is utterly fearless, more than capable of facing down a scary monster alien. This Jonesy is also pretty darn fearless. Be brave, face this down, I told myself while petting Jonesy.

I was brave. On the day my state opened up the first drive-through testing station for the Covid virus, I presented myself at outpatient admissions. I wore my fleece gloves the whole time I was there and followed all of the safety guidelines. I combined two appointments into one so I could pick up the equipment for overnight oxygen level monitoring while I was in the building for pulmonary function testing. The hospital was almost deserted and had bottles of hand sanitizer out for use at every stop on my route, so it wasn’t as bad as it could have been. I literally swerved and walked around anyone in my way, especially if they were wearing a face mask…

In case you all need a reminder, my red blood cell count (rbc) is way too high, and I have blue lips and shortness of breath. My internist diagnosed polycythemia, and once I googled it I discovered that I have every single one of the listed symptoms. The purpose of all of this testing is to uncover the underlying condition causing my rbc to rise. So, let’s just jump to the chase. Here are the results:

    • My lungs are scarred and I have interstitial lung disease, a type of restrictive lung disease. I am stable and haven’t gotten worse when compared to the last testing two years ago.
    • It’s not pulmonary hypertension. Yay! That would have been really bad news. My echocardiogram showed that I am at the upper limits of heart wall thickening, and my pulmonary artery is at the upper limit of normal, but I’m hanging in there.
    • My oxygen level fell below 89% for almost an hour while I was sleeping the night I wore the monitoring equipment. Yay!! Houston, we have found a problem!!

Once the results were in the pulmonologist’s office called for a phone appointment and I got the good news. Well, the sort of good news. I have to go on oxygen overnight to keep my levels up, and the hope is that my rbc count will start to drop. If overnight oxygen doesn’t do the trick I may have to go to oxygen 24/7, but I’m not there yet. (The BLZ is happy but a little sad too. The BLZ hates to wear oxygen, and really doesn’t want to wear it when it goes out shopping… ) Seriously, I don’t appear handicapped until I have to walk with a cane and wear oxygen… then there is no hiding it any more.

Thinking about future appointments and the procedure with the hip specialist (I need an injection of steroids into my bad-boy hip), I asked what my risk from Covid was… (The BLZ was trying to not cry) and my pulmonologist told me straight out that she thought I would survive an infection but that I should put off any more trips to medical clinics for a few more weeks so that hospitals could finish gearing up for severe cases. Well, shoot. (The BFZ is now sobbing…)

Then I throttled the BFZ into silence and headed out to buy the last of the supplies that I needed to get through a few weeks alone. I’m immunocompromised; the medications that I take to control my autoimmune diseases have helped me to become stable, but they also make me high risk for any infection. Nothing has changed, I reminded the BLZ, but now the risk of a serious infection is coming at a time when the medical system may be overwhelmed and unable to take care of me. I’ve been using good judgement, social distancing, and hand washing for a few years now; I will continue for myself and everyone else sharing this scary time.

The truck carrying the oxygen equipment was at my house waiting for me when I returned so I am set up. Hopefully the BLZ will now slowly fade away and I will stop panting for air every time I move.

If this was a race to get new test results into my chart, the underlying cause of my polycythemia identified, and remedial measures into action, I have made it. I have a phone appointment with my new rheumatologist next week and I will ask her about the hip procedure and referral to the foot specialist, but I think that in the current unfolding Covid crisis there isn’t any hurry.

As for the inner voice that worries and feels panicky, my inner BFZ voice, I am going to smooth it into submission with the peaceful zen of knitting. Be brave, be brave, I purr to myself. Just like my son’s kitten Jonesy.

You all be safe out there!!

The Saturday Update: Week 11

Life is suddenly getting a little intense, isn’t it? I hope that everyone is safe and that you have your plans (and food) in place to prepare for days and weeks at home. I feel that I’m about as well prepared as I can be: months of prescriptions on hand, a yarn and craft stash that can keep me occupied for months, if not years, and all the consumable goods for several weeks at home. I already am a bulk buyer who keeps a well stocked pantry, so the last minute shopping that I had to do was pretty minor. I bought some potting soil, canned goods, some meats to freeze, and the most important item on my list:

While everyone else was grabbing toilet paper and Spam, this is what went into to my cart!!

I’m not hoarding. This is essential for life! I also need coffee, but I bought a huge bag a few weeks ago, so I am set!

Knitting

I am still running around to medical facilities for testing, and even fit in a dentist appointment and a phone appointment with one of my doctors. The knitting is suffering in consequence, but the sweater, a Pebble Tunic (Joji Locatelli) is slowing growing and I am a few inches away from the pockets. Most of the knitting went into the knitted copy of my son’s kitten Jonesy. I finished the back feet this week and am ready to start the front paws.

Those back feet look just ridiculous, don’t they! Once they are sewn up and fitted into the body of the cat they will look much better.
What do you think of the color match?

I hope to get this done in the next week. I can’t wait to get the eyes in and the ears onto this cat’s head!

Garden

This week all the birds came back and we had rain after months of snow; Spring is right around the corner. My indoor miniature roses are getting tired of the indoor life and long for stronger sun, but I am suddenly getting more blooms on them.

At least the mildew that was a problem in the early winter has gone. Hang on little bushes; in a few more weeks you will be headed outside again for the summer.
The orchids continue to wow as more blooms appear. I seriously am in love with the monster orchid. I put it out on display in the living room for most of the week and then it returns to its floodlight for a few days of quality rays. So far this is working and the plant continues to bloom and look healthy.
Books

Today I finished (at long last) The Overstory by Richard Power. This is an amazing book and totally worth reading, but I want to make some caveats:

    • There are a lot of characters with intertwining stories. Their names change from time to time. The author jumps back and forth between the characters as he synchronizes the story line elements to build a complex, but compelling, conclusion. This is not a good book to read slowly over a few weeks.
    • I listened to a lot of this book while knitting, which was another mistake. It made things too slow. The jumps between characters, which is obvious in the text formatting, was confusing in the audible version. I couldn’t keep track of the names and shifting imagery the way I should of.
    • You kind of have to love nature, appreciate art, and value a complex multi-layered story to enjoy this book.
    • I am a geek, a biologist, and an outdoor educator for my state. I think that visiting a fish hatchery is a fabulous outing. I long to have a bee hive. I tend to let spiders and shrubs just do their thing with a little gentle intervention… and I also struggle with my neighbors to leave my front lawn alone; they will trim shrubs, spray for weeds, and edge the grass if I don’t keep an eye on them. These men are trying to help, and I appreciate them immensely, but that perfectly trimmed shrub just had all of its flowers clipped off…  why do men think that shrubs need to be perfect cubes? I mulch under my rose bushes and they helpfully clear out my flower beds. They also take cuttings from my plants and admire my roses. I do manage to keep the back yard the way I want: the leaves don’t get raked in the fall, and the dandelions flourish back there in the spring for the bees. By midsummer my back lawn looks great, I have bees swarming my other flowering plants, and the neighbors comment from time to time about how nice it looks. Somehow the front yard doesn’t do as well… because of all this I appreciated some of the messages in the book.

I’m glad that I read The Overstory, and the name is really meaningful once you have finished the book, but I do think that it isn’t for everyone. Me, I will never look at a tree the same way again.

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 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.

MacKenzie Speaks: Hey, Yellow Boy! Save a Garter Snake for Me!!

Hi. I’m MacKenzie.

Life has been good to me.
The Mother of Cats has given me lots of pets, toys and cookies. Even though she didn’t always give me everything that I wanted, I know that she did the best she could.
I once beat up the pit bull who lives next door…
and I spent hours and hours out in my favorite shady spot waiting for wayward squirrels and birds…
and I supervised lots of knitting projects for the Mother of Cats. Maybe there was a little yarn chomping on the side, but hey, I’m a cat!!

Today things got really bad for me again and the Mother of Cats held me tight as I slipped away to heaven. I’m on my way there now and I totally expect to have some cookies waiting for me when I get there!

This is MacKenzie, signing off.

>^..^<

Hurry up, Bro! I’ve got a garter snake all warmed up for you!! Just wait until you see how big the butterflies are here… There is a cat mint patch bigger than anything you’ve ever seen before, too!!

MacKenzie

January 2004 – February 26, 2020

MacKenzie and the Greatly Loved Sweater

I have knitted quite a few Caitlin Hunter sweaters; she is one of my favorite designers for sure. One of her sweaters, Nordiska, was one that seemed to be a big hit with my cat, MacKenzie. The whole time I was knitting it I battled with him to STAY OFF THE SWEATER!!! It was just nuts! When I finished I took the final picture of it hanging from a tree so I could get the shot without a cat flopped on the sweater. My project notes on Ravelry are here.

Sometimes I had to give up and just let him have the sweater.

Somehow it seems to be fated that, out of all of my handknitted sweaters, I was wearing this one the night I rushed MacKenzie to the vet’s office. In the middle of the struggle to get him medicated there was a little injury…

Do you see that snag? One of MacKenzie’s back claws pulled out a one-ply 16 inch long snag!
Here’s the close-up.

That pulled row is so tight there was no way to hide it and it really affected the way the sweater fit. Ugh. I like this sweater, it is really comfy to wear (that burgandy yarn on the sleeves is a cashmere blend), so today I pulled myself together and attempted to repair it. Lucky for me, I obsessively save all of my left over yarn, and I had exactly what I needed to do the repair.

I started by putting in a life line above the damaged row of knitting. Of course MacKenzie was all over me trying to snag the yarn or maybe, if he could get away with it, just move in for a nap on the sweater.
Eventually I got life lines above and below the damaged row of knitting.
Once I had life lines above and below the damaged row of knitting I carefully removed it. I left 2 inch tails of the yarn from that row at each end so I could secure the ends of the replacement row once I got it in.
After that it was easy to return the stitches to the needles (and thanks to Ravelry I knew what size needle I had used!) while fending off more feline assistance…
and I then used Kitchener stitch to make the repair. Whew! This was a little rocky at the start, but I got a feel for it as I went.
I used a steam iron to block the stitches of the repair to blend in with the original knitting and ta-daa! I have a  functional sweater again. 

The repair isn’t perfect as I can sort of see my Kitchener work, but the casual observer would never see it or suspect what had happened. My beloved sweater is back in service, and from now on I will be taking it off before I subject MacKenzie to any more vet related abuse.

Poor guy! This wasn’t a good night for MacKenzie or my sweater!

Tonight it is snowing again and I am getting ready to settle in to knit on my latest sweater project. MacKenzie, exhausted from trying to put the moves on my sweater during the repair, is now taking nap. A perfect evening to get some serious progress done on the current sweater project.

Be good to your cats and knitting, people!

MacKenzie Speaks: MacKnitzie takes a road trip.

Hi. I’m MacKenzie.

Remember these yarns that were used to knit my look-alike friend?

Well, I’ve been hanging out with the knitted friend all week while it has been snowing outside. He is almost as good as a blankie!! The Mother of Cats had some trouble naming my knitted buddy… she got lots of suggestions from other bloggers (whatever that is… do they have cookies?) like Matheson, and Ross, and even Fuzzy, but when one of her blogging buddies suggested “MacKnitzie” that was the name!!

Anyway, the Mother of Cats took MacKnitzie with her when she went on a road trip to her son’s place this weekend. She left me all alone!! Why does the Mother of Cats do these things, and why did she have to take MacKnitzie with her? You should see all of the things that MacKnitzie did while I was home all alone without anyone to groom my fur or give me cookies for my afternoon snack. The Mother of Cats needs to have better priorities!!

MacKnitzie got to sleep on a strange cat pillar…
And he played with the new kitten that belongs to the Mother of Cats’ son.
Okay, I heard from MacKnitzie that the kitten beat him up, bunny kicked him, and chewed on his paw. It was just awful! How could the Mother of Cats let this happen to him. When it was over he rested with the kitten’s toy rat until he recovered.
Then he took a nap with the grown up cat that lives there.

Whew. It was really hard to get through the two days without MacKnitzie!! I can’t believe that the Mother of Cats separated us like that! What was she thinking about? Thank goodness she brought him home safe again for me to take naps with last night.

Because MacKnitzie is the best little napping buddy a cat could have!

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

  • I’m collecting all of the yarns to make two more cats. The first will be the orange kitten, and then I have to figure out how to knit a tuxedo Maine coon cat… lots and lots of fluffy fur going on!!
See what I mean?
  • I took all of the collected yarns up to my son’s place this weekend along with the knitted cat so he could give me feedback on the yarns that I was thinking of using.
  • I got such great ideas for names for the knitted cat! My sister called him Fuzzy, which he certainly is. Highlandhuffalump suggested the clan name Matheson, which I really liked, and then Catherine mentioned Ross for a name, which was also pretty darn appealing. When mildlygranola suggested “MacKnitzie” it was over: the knitted cat absolutely decided that it wanted to be named MacKnitzie!! Thank you all for the help.
  • The knitted cat is the pattern Cat by Claire Garland. MacKnitzie’s project page is here.

MacKenzie and Me

I just got the email from the vet’s office last week: Happy Birthday, MacKenzie! Really, we aren’t completely sure how old MacKenzie is as I adopted him as an adult from a PetSmart over 14 years ago. The vet at that time felt he was at least 2 years old, which makes him now over 16. He is an elderly gentleman cat in his golden years.

Things weren’t always good with MacKenzie. He had been surrendered by his previous owner due to bad behavior: he scratched and destroyed everything in his path. Okay, let’s be frank here: MacKenzie was hell on cat feet!! Sneaky and wise to the ways of a spray bottle, he was hard to control as he ripped up curtains, furniture, and even dry wall. He was also extremely needy and demanding; there weren’t enough toys in the world to keep him entertained. Very smart, strong willed, curious, socially inclined, and a cat asshole, he was a mess like no other.  I hunted for cat behavior modification tips on the internet, bought cat trees, scratching posts, liquid catnip, and kitty deterrent spray for the furniture. I also bought kitty cookies!!

And I got him a kitten! This is Yellow Boy, his “baby” who really calmed and stabilized him until his death 18 months ago.

It took a few weeks, but with enough toys, his kitten, and lots of positive attention (and scratching posts) his behavior changed and he transformed into the cat I have today. He’s still a handful, but he (mostly) wants to please me.

Today he is my buddy and companion as we both struggle with medical issues.

The last year has been one of difficulty and medical misadventures for MacKenzie and me. Last winter I was struggling with swollen and painful joints, inflamed tendons/ligaments, and had trouble walking. MacKenzie’s right jaw locked and became badly damaged. I had to cut down his kitty cookies. By the end of summer my leg was completely collapsing and dropping me, and MacKenzie blew out the other jaw joint. I could see white bone in the joint before I got it to unlock and rushed him to the vet. Not good, not good, not good. I got him in the door at the vets office in his carrier somehow while managing to walk with one crutch.

The vet drew blood while we were at the office.

MacKenzie will need surgery to completely recover, but in the meantime the vet and I decided to use a course of anti-inflammatory drugs to help him heal. I wasn’t sure I should put him through surgery due to his age and general hatred of vets. The biggest problem was having to move him to soft food and there could be NO MORE KITTY COOKIES!!! MacKenzie hates soft food so I also bought him kitten food with its tiny kibble.

The blood tests showed that MacKenzie had hyperthyroidism so we started him on medication for that. Everything was going great until…

We ended up at the emergency animal service in the early morning hours of Christmas Eve.

We were really in trouble. MacKenzie was taken back for x-rays and an evaluation. Extreme constipation. A swollen spleen. Stones in his bladder. The vet wanted to do a biopsy on the spleen as it is probably cancer. He needed to have special food to dissolve the kidney stones; he will need surgery if they don’t dissolve. He had a loose tooth that needed to come out. I started him on the food and we made plans to have an ultrasound done in another month to check on the spleen and bladder stones.

Meanwhile I was having a spot of trouble myself. I developed extreme exhausion and worse shortness of breath. I had a few bouts with faintness and couldn’t stay on my feet more than a few minutes at a time. I collapsed in the yarn store and just narrowly avoided a 911 call. My face looked blue around my mouth way too much. I had a persistent pain in my side. My doctor ordered blood tests and a CT scan. I was ticking all of the boxes for lymphoma…

The special food for MacKenzie’s bladder stones came as soft food and a dry nugget kibble. The kibble was much larger than the kitten food, but I switched him to it anyway and offered him soft food too. I faithfully kept giving MacKenzie the medicine for his hyperthyroidism as the vet emphasized that this was critical for me to do. I was supposed to give MacKenzie a stool softener every day, but he refused to eat it on his food and would just vomit up the pill if I got it down him. The strong-willed sneakiness that got him dropped off at PetSmart all those years ago was back as he snuck behind furniture to throw up the pill where I wouldn’t find it.

Such a sweet boy… but very strong willed!

I caught the flu when I went in for the CT scan, and while I was sick MacKenzie began vomiting and showing signs of constipation. For 4 days. I battled with him to get his stool softener in. Desperate, I finally smeared Vaseline on his paw hoping he would lick it off and ingest it, and I stopped giving him his hyperthyroid medicine as I’m pretty sure it is the cause of this constipation.

Meanwhile my test results came back: not lymphoma, but that pain in my side is my spleen. My spleen! Me and the cat, rocking our swollen and painful spleens!! My blood work showed that my red blood cell count was way too high, and I had to get tested for a rare blood disorder called polycythemia vera (no results yet), and my doctor ordered a couple of other cancer screening. I also have a small hiatal hernia, a damaged esophagus, and increased fluid around my heart. Oh, scleroderma, why can’t you just behave yourself?! I have a sick cat on my hands!!

Vaseline saved the day and we managed to stay out of the kitty ER. Then MacKenzie’s loose tooth fell out and I broke a molar. “Why are we trapped in this bizarre parallel medical misadventure horror story,” I asked MacKenzie. Too sick with the flu to go anywhere, we both just had to hang tough for another week.

Then, just as MacKenzie got to the 30 day point on his special food, he dislocated his jaw again. Well versed in how to respond at this point I was able to get it to release within seconds, but that was the end of those big kibbles. I switched MacKenzie back to his kitten food. The vet prescribed a sugar solution, our last option, that I’m supposed to give MacKenzie three times a day to control the constipation. Right. I’m supposed to convince this ornery, strong-willed, too-smart-for-his-own-good cat to gulp down sugar water from a syringe every day. How can I do that without getting bit?

Give him KITTY COOKIES, or course. I stay right with him the whole time in case his jaw goes out.

So, here is the crazy end of the story. I’m feeling better after three weeks of bed rest and eventually we will get to the bottom of my new symptoms: I have some invasive testing coming my way and depending on what happens there will be further treatment. I’m pretty sure I’ll be back on oxygen before this is over. My cat is also feeling better and is pretty much back to where he started: eating the food that he wants and getting his kitty cookies again. Here’s the thing: I am in control of what happens to me, and can decline medical treatment, but MacKenzie needs me to do that for him. Last week I made those decisions.

My vet calls each week to check on MacKenzie; she has discussed the importance of maintaining a good quality of life for him as long as possible, but to not go too far.  I have stopped all of MacKenzie’s meds except for the sugar water and I have decided to not subject him to any invasive testing, surgery or chemo. I’m going to keep him as comfortable as I can and we will ride this out to the end together.

And then if there are garter snakes in heaven MacKenzie and Yellow Boy will be chasing them together.

Heaven had also better lay in a stock of kitty cookies!!