Raynaud’s Disease – Yarn, Books & Roses

The Scleroderma Chronicles: A Decade on the Little Teal School Bus.

Here it is again: World Scleroderma Day.

June 29th is World Scleroderma Day. In Australia sunflowers are used as a symbol of scleroderma. Almost everyone uses the color teal for scleroderma.

I used to be a high school biology teacher before I became a scleroderma patient, and I took my students on field trips sometimes. We would all pile on the bus and off we went on one adventure or another: into the mountains for an ecological assessment, or to the Natural History Museum for an anatomy lesson, or a visit to a biotechnology center, or even off for the weekend to study for the Biology AP Exam. It was always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.

Lately I have been thinking about my illness as a ride on a little teal-colored school bus with a crazy rainbow striped zebra behind the wheel. That dang scleroderma zebra is careening down the road on its way to an unknown destination just over the horizon, and would you believe it, he keeps stopping to pick up more passengers along the way.

Don’t make fun of my bus! I changed the colors on some clip art that I found, and putting a zebra behind the wheel was beyond me!! Use your imagination… the zebra is braying hysterically while driving the bus!

When the bus stopped for me, and I stupidly jumped on board, I only had a few symptoms. I had some trouble swallowing sometimes. I had GERD. I suddenly lost circulation in my fingers if I got cold. Speaking of my fingers, they were pretty fat and puffy. I had lots of red blotches on my face, and the skin was pulling tight. It was hard to open my mouth wide…

Still, I was feeling pretty hopeful as I jumped onto the bus. “This will be fun!” chortled the scleroderma zebra. Bad zebra, bad!! Before I knew what was happening, that dang striped miscreant had pulled the bus over, opened the door, and couple of little demon passengers had hopped on board: kidney disease and gastric complications. What kind of an outing is this… have you ever heard a zebra laugh?

Bouncing down the road, suddenly screeching to a halt periodically to pick up a new passenger, the zebra continued the crazy outing in the little teal school bus. The little demon passengers kept piling into the bus, and those little monsters even started to sing “the wheels on the bus go round and round…” while laughing and clapping. What kind of a field trip is this, anyways?????

The demons all wore little nametags:

Gastroparesis
Pericardial effusion
Chronic respiratory failure
Diastolic dysfunction
Pulmonary Arterial Hypertension
Interstitial Lung Disease
Heart Failure with preserved ejection fraction

“STOP THE BUS!!!!” I shouted at the zebra! “I absolutely did not sign up for all of this sh*t!!!!” Nope. Evidently there is no stopping the bus. Ten years on the road, and we are still on our outing. Somehow some extra demons that don’t even wear nametags snuck onto the bus, but they are certainly annoying as they are making all my tendons hurt and what is up with all this edema!!!! Did I mention the fatigue? Always, always there is fatigue. That fatigue demon is sitting on top of the bus blowing raspberries at all the other people on the road…

It has now been a decade for me on the little teal school bus: always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.

I learned about prioritizing and not worrying about things that haven’t happened yet. I learned to advocate for myself, and I have maneuvered myself into the care of some great doctors. I have learned to build for myself a network of supporters. I pretty much have lost interest in making money, but I’m highly motivated to help others. I’m keeping notebooks and collecting souvenirs while on this field trip, and to be frank, it is the outing of a lifetime. Believe it or not, I’m now singing along with the little demons on the bus with me…

The wheels of the bus go round and round… and the zebra is still laughing its head off… and I’m okay.

Happy World Scleroderma Day.

Note: Scleroderma (systemic sclerosis) is a rare autoimmune disease that is chronic, progressive, and often fatal. It has three main hallmarks: damage to blood vessels, the development of autoantibodies, and subsequent scarring of tissues and organs. Right now, while there are many excellent treatments emerging to handle the serious complications due to the underlying disease (like my pulmonary arterial hypertension and interstitial lung disease), there is no cure. You can learn more about scleroderma and systemic sclerosis in the links below.

The Scleroderma Chronicles: World Scleroderma Day, 2021

Here we are again… World Scleroderma Day.

I’ve written about scleroderma on this date for several years now. I just went back and read what I wrote last year and decided that I did a pretty good job. I talked about getting diagnosed, the complications that are being caused by my disease, and what that means in my life. Here’s that post if you would like to check out my take on things last year.

This is one crazy-ass disease and it certainly has complicated my life. In the year since I wrote that last post I have hung in there (hey, staying home for a year on oxygen slowly improving was actually good for me) and then emerged from strict lockdown to get lots of testing to try to sort out what is the cause of my blue-lipped status and the source of other little issues that I have going on. While thinking about what to write today I thought of a few things that I haven’t written about before and some things that are new since the last post.

The correct name for the type of scleroderma that I have is limited systemic sclerosis. Systemic means that every part of my body is being impacted by this disease, and the word sclerosis means that scarring is happening in tissues all over my body. What’s happening to me is not obvious to the outside viewer, but it is insidious and ongoing all the same. Somehow, by some mechanism that isn’t clear, my systemic sclerosis is being driven by antibodies that I’m producing that react with the centromeres of my cells.

What’s a centromere? I’m shocked, shocked I tell you, that you just don’t know that! Seriously, the centromere is that little place in the middle of a chromosome that can be seen when cells are getting ready to divide. This is a little tricky because the only time we can see chromosomes is when cells are getting ready to divide and they have already copied themselves: the little pinched waist in the middle of the chromosome where they are connected is where the centromere is located.

Got that?

This image belongs to the NIH; as a taxpaying citizen I hope that it is okay for me to use it here. 🙂

Somehow something happened to a protein located in the centromere area of the chromosomes in my body that made it look “different” and my immune system responded by making antibodies against that protein. The antibodies that are produced are called “anti-centromere antibodies” and their presence is highly suggestive of my form of systemic sclerosis. The alternative explanation is that my immune system just went berserk, decided to attack my own cells, and began making these antibodies on its own. I personally think that something changed and then the antibodies were made as a response. My money is on a virus.

It really doesn’t matter all that much since, once the immune system is triggered, the immune response can’t be turned off and one day you are sat down in some rheumatologist’s office and carefully told about what is happening to you and what to expect in the future. Your skin will get thick. Your blood vessels will be so damaged that they will thicken and spasm shutting off blood flow to parts of your body unexpectedly. The scarring tissue will build up in your digestive tract and damage the smooth muscles that you need to move food along. Your kidneys will lose function. Your nerves will be damaged. Your lungs need to protected since they are especially vulnerable to damage from accidently inhaled stomach acid. If your disease flares badly enough you can develop autoimmune pneumonia. Your tendons, muscles, and joints are all in trouble. You are in trouble. The damage will progress and there is no cure.

“This is really serious,” one of those early doctors told me. “This is like a diagnosis of cancer, but of course, some cancers can be cured…”

Well, shoot. Good thing there are drugs to help control symptoms and to slow the progression of the disease by dialing down the immune system.

Yay for drugs!! I am on drugs to shut down my stomach acid production (my lungs are doing pretty well) and on drugs to crush my immune system into submission. I’m on anti-inflammatories to control other cellular pathways activated by those ill-behaved antibodies. I get steroid injections to help my damaged joints and inflamed tendons. I have strict dietary limitations. I do lots of physical therapy. I’m on oxygen overnight to keep my red blood cell count in a normal range. I dress in layers to help control the spasms of my circulatory system, a phenomenon called Raynaud’s. I knit almost every day to keep my fingers from stiffening up and contracting. I now have a shiny purple cane to help me walk.

Every day is a challenge, but I am fine.

So what is new this year?

Scleroderma has damaged my heart. They are still testing to clarify exactly what is going on, but so far they have established that there is scarring in the heart muscle that is making my heart “stiff” and that somehow I developed a hole in my heart. There are suggestions of pulmonary hypertension, but I need more testing for a definitive diagnosis. No wonder I turn blue in the face and pant when I walk.

Oh, yeah, there is also a pandemic going on.

One of the greatest ironies of the last year is that serious cases of Covid-19 share similarities with the clinical symptoms of scleroderma crisis. Immune system-mediated pneumonia caused by an overreacting immune system is a hallmark of both conditions. Then there is this… Remember those drugs that I take to crush my immune system into submission? I take two drugs for that purpose. One of them, hydroxychloroquine, was (irresponsibly) politicized by influential individuals early in the pandemic and therefore became short in supply; my muscles and joints immediately rebelled when my supply lapsed early in the lockdown. The other drug that I take, mycophenolate mofetil, is linked to poor response to the Covid-19 vaccine. I am vaccinated and I am making anti-Covid antibodies, but since my total antibody count is very low my doctors aren’t sure I can fight off a Covid-19 infection fast enough to stay out of the hospital. I’m advised to continue to mask and isolate because… blue face, hole in heart, stuff like that…

For me, lockdown goes on.

So, here are the takeaway messages from this post. Be kind. There are illnesses that are really debilitating that you can’t see when you look at that person walking into a store from a handicapped parking spot. Don’t be dismissive of conditions with funny names that you’ve never heard of before. I know that it is hard to understand conditions that are beyond your experience and that you can’t really see, but take a moment to let someone tell you about their illness and the daily challenges that they embrace. If you meet a person with an autoimmune disease, they deserve a hug. If they have scleroderma you should give them two hugs! Be understanding of people who are still wearing a mask in public; perhaps they are braver than you can imagine.

Today is World Scleroderma Day.

Go Team Teal!!

Note: If you would like to know about different types of scleroderma you can learn about them here.

The Saturday Update: Week 10

This week I have been really busy with appointments and testing. I wrote about the first round of doctor’s appointments in this earlier post (The Blue-Lipped Zebra Report) where I also showed off my fabulous monster orchid in bloom and a pair of finished socks. I finished the week with an echocardiogram and two MRI tests. In the week when COVID-19 arrived in Colorado I walked into 4 different medical clinics feeling like I was walking into the lion’s den. Hopefully there will be some good results soon. Next week it just keeps going as I have two more tests scheduled; after the test results arrive I have appointments with two of my doctors again. Whew!

Knitting

Knitting took a hit this week as I spent too much time driving around completing medical tests to get much knitting done, but I did make some progress on the Pebble Tunic.

I’m knitting the tunic holding a single ply fingering yarn with a silk-mohair lace yarn, and knitting with the two yarns is just a joy. So soft and yummy feeling. My project notes are here. I also started knitting a copy of my son’s kitten Jonesy, which is really fun and involves even more yummy mohair. Check this out.

Once again I’m using the pattern Cat by Claire Garland. If you would like to see what yarns I’m using you can check them out on my Ravelry page.

I’m going to use some embroidery to add more color to the face later (stripes and freckles) but I think that I’m doing pretty good on the color match. I can’t wait to start knitting the stripes in Jonesy’s body.

Garden

All of this medical testing is a little traumatizing: long drives to cold rooms where I battle to control my Raynaud’s while the tests are being run. Today I drove 2 hours to be trapped in an MRI machine for 90 minutes. One hand was solid blue when I got done, but as soon as I got outside into the warmth it pinked up again. After fun like that I need a little reward, don’t you think? After leaving the clinic I drove straight to the nursery and bought my African violet some little buddies. Aren’t these just the cutest?

Aren’t these the happiest guys ever? I found the little pots on the discount shelf: perfect!!

These violets are really small and were next to the miniature plants section, so I’m not sure exactly how big these plants are going to be, but they are blooming like crazy so I have high hopes for these little guys. My original African violet is the one in the background.

Books

Another sigh. I’m still reading the same book, The Overstory by Richard Powers. I’m further along with the story, and, as I anticipated, the cast of characters (all people with a relationship with a tree), have met up and are now activists trying to save the old natural growth forests in the western US. I don’t want to spoil anything, so I’m not going to share any more details of the plot, other than I am fascinated by the work of Dr. Patricia Westerford, one of the characters in the book. She studies mechanisms of communication between trees, and in particular, is studying Douglas firs in one part of the book. Plants are crafty organisms that use lots of mechanisms to respond to the environment. They use hormones to control their growth, and they are able to track the hours of the day (or maybe it actually is the night) so that they bloom at the right time of the year. Of course they are communicating with each other!!

Look at these female cones on my Douglas fir tree. They are kind of goofy looking with those bracts hanging out between the cone scales. They have the only cone like that in our nearby Rocky Mountains. The needles are strange too… they have little tiny stems on them like leaves.

I have a Douglas fir growing in my backyard where I have been babying it for a few years as the honey locust tree next door is outgrowing it and putting it into shade. Poor Douglas fir. They are kind of misfits in our mountains, having no other close relative, aren’t really fir trees at all, and are notorious for pulling a lot of water from the ground. When I attended a forestry workshop in the Denver montaine watershed I was told that the only good Doug is a dead Doug… hey, Dougs need love too! Some of the trees in that forest are turned to sawdust by enomous grinding machines to both thin the forest and reduce water use; some of those thinned trees are evidently Dougs. Douglas firs are really important timber trees, which is why they are in this book, but they aren’t beloved by the biologists who are making sure Denver has enough water in the coming year. Luckily for my Doug I am hiding it from the Denver water board and giving it all the water that it wants. Sadly, it is the only one around and has no other Doug tree to talk to. I wonder if the honey locust ever chats with it?

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

Okay, I just had to show off the monster orchid again. I feel happy every time I see this big guy. This is why it is good to garden. 🙂

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.

Free Pattern: Sweet & Simple Vanilla Mitts

I’ve been working away on developing the pattern for the simple mitts that I mass produce and give away to share with all of you. I thought that I would get it done and posted in time for Thanksgiving, but here I am a day late. Anyway, here they are, my gift to all of you just in time to create some yummy little mitts for yourself or as a gift. I’ve made a PDF of the Mitts and also put the instructions into this post. This is the first PDF I’ve created and uploaded, and it isn’t tech edited, so don’t judge! 🙂

Sweet Simple Vanilla Mitts_Final

Happy knitting.

These simple mitts can be used to showcase a special yarn, are extra comfy due to their deep thumb gusset, and can be used as a stash buster as they only need 160 yards of fingering yarn. Oh, yeah. They will also help keep your hands warm this winter!

Sweet & Simple Vanilla Mitts

Materials:

Yarn: 160 yards fingering yarn. The pictured sample was knit using 80/20 superwash merino/cashmere yarn.
Needles: Two 16” cable needles, size 1 (2.25 mm), additional size 1 (2.25 mm) double points, or size needed for gauge. The pattern can be easily adapted to use only double-pointed needles or a large cable needle and the magic loop method.
Notions: 2 stitch markers, yarn needle, scrap yarn

Gauge: 32 stitches and 12 rows = 4 inches in stockinette stitch

Finished Measurements: The mitts have a 7.5 inches circumference and are 6.25 inches long. The size of this mitt is easily adjusted by adding stitches or rows.

Mitt Instructions

Ribbed Cuff

- 1.Cast on 56 stitches using your preferred method; I’m a fan of Old Norwegian CO as it creates a nice, slightly stretchy edge. Place 28 stitches onto each of two 16” cable needles. Join to knit in the round carefully, making sure to not twist the stitches. Mark the beginning of the round (BOR).
- 2.Work K1,P1 ribbing for 8 rounds.

Wrist: K 12 rounds. If you are using the two 16” cable needles you can easily try the mitt on to see if the wrist is the desired length to the base of your thumb; if not, you can add or decrease rounds until you have the length you want. (56 stitches)

Thumb Gusset:

- 1.Set up round: K2, PM, M1R, K1, M1L, PM, K to BOR.
- 2.K 2 rounds
- 3.K2, SM, M1R, K to marker, M1L, SM, K to BOR.
- 4.K 2 rounds. Repeat steps 3 & 4 until there are 21 stitches between the markers (76 stitches)
- 5.Next round: K2, remove marker and place the 21 thumb stitches onto scrap yarn, remove 2nd marker, CO one stitch using the backward loop method, K to BOR. (56 stitches)

Palm: Continue knitting rounds until you have completed 12 rounds. Try on the mitt again and add or decrease rounds if desired, keeping in mind that the final ribbing will add ¾” to the total length.

Ribbed Knuckle-Hugging Top: Switch to K1, P1 ribbing and complete 5 rounds. BO somewhat loosely in pattern being careful to not BO too tightly for a comfortable fit. (Note: for a balanced mitt with more coverage you can add 2 more ribbing rounds = 8 rounds total.)

Finish the Thumb: Using the 2.25 double point needles, pick up the 21 thumb stitches from the scrap yarn and place them back onto the needles. Attach yarn, pick up three stitches across the base of the thumb, and complete 5 rounds of K1, P1 ribbing. (24 stitches) BO somewhat loosely in pattern.

Note: the construction of the right and left mitt are identical; make two mitts following these directions. Weave in all ends and fix any gaps at the thumbs. Enjoy!

I gifted these mitts to a friend this summer. She let me know that they sure came in handy this summer while jogging up at Steamboat Springs in our Colorado Rockies.

I knit and gift these mitts to family, friends, other scleroderma patients, and Raynaud’s sufferers that I meet. Feel free to copy and/or share this mitt pattern with reckless abandon. If you would like to knit and sell the mitts, much joy to you, but please give me credit for the pattern.

Have a great weekend everyone!!

The Scleroderma Chronicles: Safe House

You know, I kind of view myself as a happy camper. I have more things (ahem… knitting projects) going then I can get finished on any given day or week, books lined up to read, and a “to-do” list that I’m slowly working my way through. Hey, people, I fixed the loose tiles on my kitchen floor last week!! My cat MacKenzie is my constant sidekick throughout the day as I knit, work in the garden, read in bed, and even with me (underfoot, demanding cookies) while I’m cooking. Even on the bad days when I’m pretty much down for the count, I manage small victories. There is just one problem with this picture.

Look at these beautiful coneflowers I just added to the garden. I’m hoping to lure some butterflies into the yard. Every garden should have butterflies, don’t you think?

I just don’t fit in the world all that well anymore. In my home, living the life that I’ve created for myself, it is really easy to forget how much I have adapted to accommodate the limitations of my scleroderma, Sjogren’s, and fibromyalgia. Once I go anywhere else reality hits me hard. Every trip out of my house is going to come at a cost. Here are the worst of the offenders that will lay me low.

Air Conditioning I know that almost everyone in the world is grateful for air conditioning in the summertime, but for me it is a royal nightmare. The shock of walking into a refrigerated building on a hot summer day will trigger an immediate Raynaud’s attack. I pull on long sleeves and fingerless mitts as soon as I get into the building, but my lungs know what’s up and I have trouble breathing. The airflow makes my eyes burn; I’ve been reduced to wearing my sunglasses indoors to protect my eyes. Don’t even get me started on the refrigerated cases churning out cold air; you haven’t lived until you’ve had to pull up the hood of your sweatshirt and the sleeves down over your hands so you can score some butter and eggs. If that wasn’t enough, there are also usually…

Scented Products Almost all buildings use scented cleaning products and sells additional items with scents. Candles. Lotions. Laundry soap. The scented bathrooms are a nightmare. If I’m not already in trouble with my breathing I will be if I have to walk down the laundry detergent aisle at the grocery store: I also start to itch and my face swells. Why do these chemicals even exist? They can’t be good for anyone!

Restaurants These are a special kind of hell for me. All the drinks come cold and with ice, and the entrees are served piping hot. There are other landmines that I need to avoid: salt, lactose, fiber. I have to carefully select something that is very soft and that will behave itself in my gastroparesis stomach. I can’t have spicy food. I can’t eat fresh veggies. Actually, to be safe, some of this food should go through a blender… I actually once soaked a cut up sandwich in soup so I could eat it…

Walking I am trying really hard to meet my walking goals every day, but I stretch those steps out over the day. A trip to run errands can be just exhausting if I’m on my feet for a couple of hours at a time. I need to always carry water, be aware of the location of bathrooms, and have places where I can sit down if I need to.

Sunshine It makes me sick! Enough said.

Ready for another picture? These paper wasps are building a nest right on the edge of my deck! MacKenzie and I are not amused. Still, it kind of shows how the outside world is full of dangers…

Recently I had a tough talk with myself about pruning down my outings and being more strategic about how I expend my energy. I need fewer outings, and my destinations need to be closer to home. I need to live online. I need to in a safe environment as much as I can to manage my diseases.

My home is my safe house. I have no air conditioning and I minimize air flow. I keep the temperature in the mid 70’s in the day so that my joints and lungs will be happy. I cook all of my own food, I don’t own any salt at all, and everything that I drink is room temperature. Fruits and veggies go through the blender to become smoothies. Every product that comes into the house is scent free. I’m always close to a bathroom or a soft surface to crash onto for a quick recovery if I get dizzy. My stairs have wrought iron rails that I use effectively on bad joint days. Flourishing in my safe house I sometimes forget how sick I am because, well, I have fewer problems.

I planted this yarrow last year in a flowerbed that has killed almost everything planted into it. Not this yarrow!! The secret of gardening, and living with serious chronic illness, is to keep on trying new things, and to match your needs to your environment. Or, in my case, make your environment match your needs.

Tomorrow I have a doctor’s appointment so I listed up some symptoms and issues that I need to ask her about. It is quite a list now that I look at it, and it kind of underscores how chronic illness can trick you into thinking that things that would normally send you screaming into urgent care are “just another day of scleroderma.” Shortness of breath is an almost daily thing. When I glance into the mirror these days I sometimes notice that my face is blue. One hip keeps failing me; okay, I actually have to lift that leg to get into the car. My joints swell so much that I can’t sleep at night.

But I am good, here in my little safe house with my gardens and cat.

Tomorrow my doctor and I will attack some of these scleroderma/Sjogren’s issues. I kind of think that lung testing and a MRI of my hip are in the future, and that there may be follow-up with my pulmonologist. I’ve been gathering up my energy in preparation for these outings into a world that is dangerous for me, knowing that after each outing my garden swing, knitting and latest book will be waiting for me. With a room temperature ice tea.

It is good to have a safe house.

The Thrum Adventure

I started this year with a commitment to reduce the size of my stash and a fuzzy notion of attacking some knitting projects that I had never done before. I thought that I would like to learn how to do double knitting. Maybe some herringbone stitch. Definitely, thrummed mitts.

Mitts and cat. — It was cold this weekend so I worked steadily all day Sunday on the thrummed mitts and got them done. This is my son’s cat Daxter checking them out.

I was really motivated to knit some warmer mittens, and I’ve heard that thrummed mittens provide serious warmth. They just look so cool, they can felt and mold themselves to fit hands well, and then there is the insulation factor. My Raynaud’s has gotten worse over the last year and I have some concerns about digital ulcers. Nope. I don’t want one of those!! I need to be able to function in the cold without taking risks with my fingers.

Cat and roving. — My BKB Deb gave me this merino roving from Malibrigo. Perfect for thrummed mitts!

I found a promising pattern online, Warm Paws by Carol Ullmann, dug out some worsted weight yarn from the stash, and watched videos on YouTube to learn about knitting in thrums. Pretty straightforward, and the pattern gave excellent instructions too.

Loop of fiber. — The staple length of the merino in the roving was pretty long: 3″-4″. It was also pretty darn soft and lofty. I pulled off little strips about 6″ long and then folded them into loops.

Making a thrum. — Each loop was pinched in the middle to make a bow, and then twisted to hold it together. I quickly discovered that my thrums needed more handling to keep them from shedding on the mitten, so I added a little water to the center of the loop (where my fingers are gripping it) and then rubbed it briskly with a finger on the back of my hand or wrist to make the wool felt in the middle. Hey, I have scleroderma, and I can’t twist the loop between my fingers, but that would probably work for another person. 🙂

Thrums — The prepared thrums were pretty hardy once the middles were felted and I could make several ahead of time. In this shot you can see the felted middle in each thrum.

Inside of the mitt. — Once knitted into the mitt the loopy thrums stayed in place and behaved themselves.

The finished mitts are just fantastic and fit like a dream. I wore them as I drove home from my son’s last night in the cold and snow; my hands stayed warm and for the first time in a long while I didn’t have a Raynaud’s attack during the drive. I’m still researching battery operated warm mittens, but in the meantime these thrummed mitts are going to be a game changer for me. The way that merino felted so quickly I figure that I can just stuff more loops in to increase the insulation as needed. Here are my project notes.

So, how am I doing on my New Year’s resolutions? I can check thrummed knitting off my list, and with this project I have now removed 14 skeins of yarn from the stash. I’m pretty sure I will make the goal of reducing the stash by 50 skeins this year. Of course, not every project is quick to complete. Check out how I’m doing on the fabulous, colorful mitts (that would make a unicorn cry with envy…) that I’m making for my knitworthy niece…

Happy knitting everyone, and I do hope that the weather is behaving for you.

The Scleroderma Chronicles: Invisible (Star) Wars

I’m a big fan of the movie Star Wars. Seriously. I remember the first time that I saw this movie; we stood in line for hours, laughed at the droids, were amazed by the special effects, wished we had the Force, held our breath as the tension at the end of the movie mounted, and cheered wildly when the Death Star blew up. Over the next year we watched the movie 13 times in the theater, memorized the sound tract, and to this day I hear snippets of dialogue echoing in my mind…

Like this line said by the droid C-3PO to his buddy R2-D2 as they escaped from their badly damaged and captured ship to carry out a secret mission as directed by Princess Leia: “That’s funny, the damage doesn’t look that bad from out here.”

Author — Bundled up in wool and staying warm. You can’t see my stage 3 kidney disease, interstitial lung disease, struggling gastric and intestinal organs, burning muscles, painful joints, brain fog, and my truly astonishing fatigue.

That’s me. Badly damaged on the inside, not that bad on the outside. The curse of all people who have an invisible illness. People often say, when they learn about my illness, something along the lines of… “Well, you look great!” It’s nice to hear, but it also suggests that I’m not really that sick. I can’t help but feel that they think that I am an attention-seeking hypochondriac. Sigh.

Raynaud's — You have to admit, the visible symptoms are really subtle. It can be as little as lost circulation in a finger: Raynaud’s phenomenon. What can’t be seen is that I’m also experiencing circulation loss in my lungs, kidneys, brain and other organs.

Edema on arm. — A poor dietary decision can hit me hard: dizziness, muscle pain and edema in my arms. I ate cheese enchiladas at my favorite restaurant this time.

It is amazing, really. How can the damage not look that bad from out here? I struggle for air. I often lack the energy to get through basic tasks. Pain stalks me waiting for a poor decision on my part that will give it an opening. An incoming weather front pushes me over a cliff. Holidays can be the worst as I struggle to manage my energy resources, diet and exposure to cold. I can get through the Christmas dinner okay, but the next two days are spent in bed sleeping myself back to functionality.

And yet, I’m starting the New Year feeling pretty darn chipper, well… as chipper as you can after a 12 hour nap and a strong latte to launch myself into motion. See, I can get back to functionality. I’m on great drugs and I have wonderful doctors. My latest round of medical testing shows that I am tolerating my drugs well, and my disease progression has virtually ground to a halt. I am making some gains. I spend a lot of time managing my symptoms and hoarding energy resources, but I am not getting worse. Some really scary words on my chart have gone away over the last year: chronic respiratory failure, pulmonary arterial hypertension, and severe kidney disease are no longer there. I have wonderful friends and supportive family members. I am still independent and can get out to social events.

MacKenzie the cat. — I have the world’s bossiest cat to tend to me…

The rose bush is also struggling and covered with mildew. Sigh. It’s like a metaphor for my life. Bloom where you can, and pretend that all this other damage isn’t happening over there… Jedi mind tricks can be useful when dealing with implacable enemies like scleroderma and mildew.

Use the Force! I hear in my mind. If you know the movie Star Wars and the other movies in the series, it is a tale of heroic underdogs battling against great and evil foes, desperate times, hope and change.

I don’t have a light saber, but I have knitting needles.

I don’t have the Force (an invisible energy field created by all living things), but I have an online and real network of people and other living things that connect to me and support me. I have science and time on my side: new drugs are on the way and some of them are in new rounds of clinical trials. Remember the movie poster? A New Hope. Yep. Every year brings me a new edition of hope.

My illness is mostly invisible. The battle is real. Bring it on, 2019, I am ready for you!

Footnote: Perhaps you are wondering… whatever does she have? I was diagnosed with Limited Systemic Sclerosis and Sjogren’s Syndrome in 2014, and those two conditions carry with them a host of complicating conditions such as Raynaud’s, colitis, gastroparesis, interstitial lung disease, kidney disease, heart disease, oh my lord, and a partridge in a pear tree. In 2016 I was referred to palliative care and told to make final plans; Myfortic (CellCept) saved the day and I was discharged from palliative care a few months later. In 2018 my rheumatologist added fibromyalgia to the list and there is an ongoing discussion about dermatomyositis. Why do these autoimmune diseases throw parties and invite all of their friends? It’s like the bar at Mos Eisley Spaceport with all the strange aliens. As Obi-Wan tells Luke, “You will never find a more wretched hive of scum and villainy. We must be cautious.” I don’t have a blaster, but I think that in this case the drug Myfortic will do the job!

The Scleroderma Chronicles: The Fourth Year Report

Wow. It is hard to believe it, but it has been more than 4 years since my diagnosis: Limited systemic sclerosis (scleroderma) and Sjogren’s disease. Time just flies when you are having fun, right? Seriously, I have been reflecting for a few weeks about what to write to mark the end of the fourth year. Should I write about how strange a dichotomy scleroderma is: people tell me that I look good, but what they can’t see is how my entire life is organized around accommodating my illnesses. Maybe I should write about how I have developed a Zen-like patience as I hit each roadblock; why worry about things you can’t change when in the course of time all will become more clear? Maybe I should talk about growth. Personal growth in the face of a heartless disease as I came to terms with my own ability to become an active member of my treatment team and to assert myself in the face of medical experts.

Done! Personal growth it is!

Author wearing an hand knit shawl. — Even in the worst of times it is possible to create items of beauty that provide comfort and are therapeutic. I knit this shawl last spring while my doctors were determining if I had developed potentially fatal complications of systemic sclerosis: pulmonary hypertension or heart failure were the candidates. There was nothing to do but to knit on as I waited for test results.

When I was first diagnosed I really did go through a time of sadness and grief. It just came in waves for me as I began to figure out that systemic sclerosis and Sjogren’s are both incurable and difficult to manage. Then I realized that they might be disabling. Then it finally dawned on me that they might be fatal. To my horror I discovered that the 10-year survival rate was 60%. There would never, ever, be a “better”, I thought. The best I can hope for is becoming stable and maybe getting some softening of my skin.

The great unknowns of scleroderma really wore me down. Doctors kind of dodged my questions or referred me to another doctor on the team. I was afraid, and I didn’t want to make too much of a fuss because I was dependent on the medical specialists and I didn’t want to alienate them. I was struggling, weak, and truly a victim of my disease.

Flash forward 4 years. Things have changed. I began to keep a food log and journal and I worked out dietary changes that helped me. I participated in a self-management study, and I attended a couple of conferences. I remembered that I was trained to be a scientist, and I employed logic and reason in my scleroderma life. I spent a lot of time with Doctor Google and reading research papers at PubMed. I fired a rheumatologist, found another one, and convinced my primary care physician to meet with me regularly and to filter all the test results and doctors notes into a cohesive action plan. My care improved as I communicated better with my doctors and they developed a good sense of me and the other doctors on the team. My power over scleroderma grew as I faced down crisis after crisis. I may not conquer this disease, but by golly I will be brave and give it a good whacking!

Here’s an example of what I’m talking about. I have to get routine blood testing to make sure that I am tolerating the drugs that I’m on well. I went for the blood draw two weeks ago, and a couple of days later I got a phone call. There was a problem: a liver enzyme was suddenly elevated above normal ranges. I was told to head on over to urgent care to get checked out. I’m a compliant patient, so that is what I did. This is what happened when I met with the doctor in urgent care.

Doc: You’re fine. It’s just a bad test result.

Me: I have been experiencing worse (crushing) fatigue for the last two weeks as I’ve been fighting a cold and my muscle pain is pretty bad. I have been staying in bed two days recovering for every day up.

Doc: I think that we should put you on prednisone.

Me: I am very nervous about that. I’m already pretty immunosuppressed, and my pulmonologist has specifically told me to refuse steroids if I hit the ER.

Doc: Then we should start you on Cymbalta for the fibromyalgia pain.

Me: That is a drug that I’ve seen advertised that seems to have a lot of side effects. I just came through a rough patch because I was overmedicated this spring, and I’m nervous about adding another drug due to possible kidney or liver complications.

Doc: Can I at least offer you some antidepressants since you say you have trouble getting out of bed?

Me: I have fatigue not depression. It’s part of my illness.

Doc: Most chronically ill people have depression…

Me: Yep. I’ve dealt with anxiety and depression in the past. This isn’t depression.

Doc: But you will feel better.

Me: Hey, I’m not here seeking help with my illness this afternoon. I got sent here by rheumatology because of a high liver enzyme result, which you feel we should ignore, and I have chronic kidney disease. You want to prescribe a drug that will be cleared by one of those two organs? I’m not comfortable with any more medications without talking to my other doctors first. (I start edging towards the door to escape this frustrated pill pusher… maybe he just is excited to have a patient with a rare disease and wants to contribute, but I am out of here!)

Seriously, I do feel like I am living in a soap opera half the time that is being directed by my bossy cat. A soap opera staring yarn, of course!

Cat being petted. — But he is also a great source of comfort. Here he is hanging out while I was knitting the shawl that I’m wearing in my picture.

That little episode put me back into bed for another day, but I was strong, I felt informed about my illnesses, and I didn’t allow a strange doctor who was dismissive of test results to prescribe me new medications. I have grown. My thinking about what is acceptable medical care has crystalized, and I feel empowered. I will talk about these drugs with my current team, and there will be a consensus decision before I start anything new.

Over the weekend I decided to double my dose of krill oil and to eat a banana every single day. 10 days later I am over the cold, I feel much better, my muscle pain is almost gone, and it seems I am through the flare. Yippee!

So, four years into this ugly disease where am I at? I am stable! The drugs that I am on have greatly increased survival rates for systemic sclerosis patients. My skin has softened some and I have pretty good function. My Raynaud’s is well controlled. My lungs, heart and kidneys have improved and my hypertension has vanished. My GI tract continues to rule my life, but I have gotten better control with a careful diet. Fatigue and pain stalk me continually, but I was thrilled to hear this week that my eyes have also improved since my ophthalmologist started me on krill oil. Hug a krill, everyone!

I have grown, and I am stronger for it. There will be many more adventures and bumps along the scleroderma road, but I am good. My priorities have shifted, and my values have clarified. I value the small things, have lost interest in making money, and budget my time ruthlessly. Scleroderma as a personal growth plan. Who knew?

Tomorrow I go in for the repeat blood tests to see if that enzyme is now back into normal ranges.

Whatever happens, I am good.

Science and the Scleroderma Girl: Supplements and Me

Let’s be honest: everyone with scleroderma wants to feel better. We trade info constantly, and almost everyone has a supplement that they have found is really helpful. It’s tempting to load up on everything at Vitamin Cottage that might be helpful, but you should know me (geeky science girl here!) by now… if it doesn’t have promising research studies to back up the claims, I’m going to pass it up.

Tumeric (and Curcumin)

So many people have advised me to try turmeric. Cruising the internet I found lots of information from sites that are devoted to nutrition, health, or supplements, but I wanted to see hard data. Yep. Pretty darn easy to find. This controlled experiment found curcumin worked better than a traditional pain med following a dental procedure. Another study looked at migraine pain and the levels of two inflammatory markers (IL-6 and C-reactive protein); the result was that curcumin and omega-3 fatty acids did reduce inflammation. Wow. That sounds pretty promising. Finally, since one article I read suggested that curcumin could help with renal disease I hunted for that…this research showed that curcumin is beneficial for kidney disease. I scored myself some curcumin and I think that it is helping, but I have to be careful with my gastritis-prone stomach lining.

Vitamin D

“Under no circumstances are you to let the sun hit your skin!” directed my dermatologist. “Are you getting enough sun?” asked my rheumatologist. “You need the vitamin D and the natural kind you make in your skin is best…” Ugh. How am I supposed to figure out stuff like this? Because I keep a symptom journal I have discovered that sunshine makes me sick: rash, fatigue, pain. Sorry rheumatologist, the dermatologist wins this round. I started taking the vitamin D supplement not long after I was diagnosed and noticed that it helped me with depression. Who knew? My internist monitors my vitamin D levels to make sure that my current supplement is enough.

Omega-3 Fatty Acids (Fish or Krill Oil)

I was really late to come to this party. Struggling with an out-of-control Sjogren’s flare last winter my ophthalmologist suggested that I take fish oil to improve my tear production. Okay, my tears are just horrible. Not only do I barely produce any tears, but what I have flash evaporates right off my eyeballs lickity-split. I didn’t even bother to check the internet before I gulped down some fish oil tablets from the grocery store. Wow!! The next morning I woke up to eyes that didn’t hurt. Then I noticed that my neuropathy was better. Oh, yeah. There was that one study that said that omega-3 oils helped with migraines, and my ophthalmologist mentioned that he took it for tinnitus… It gets even better: it helps reduce blood clots too! Every time I end up in the ER they go on a blood clot hunt… this is probably a good supplement to add to my diet, huh. It also helps with Raynaud’s, but the effect was seen with people with primary Raynaud’s. Hey, it was a small study. I’m taking the krill oil anyway!

Tart Cherry

Things were really bad for me last spring. I had brain fog and dizziness that left me afraid to drive. The fatigue was unreal and everything hurt. My BKB Deb advised me to try tart cherry. Off to the internet I went. Oh. It is a real thing. I found this article, and this one, and one showing memory improvement in rats. Since I was miserable and couldn’t remember what a memory was, I took tart cherry out for a spin. Woohoo! I woke up the next morning feeling *normal*. I had energy, and the brain fog was gone. In the days and weeks to come I continued to feel pretty darn good until… the kidney function tests came in. My kidney function dropped 15% in just 6 short weeks and the tart cherry fun came to a screeching halt. The notation “chronic kidney disease” was added to my chart and that was the end of that. I stopped the tart cherry, accepted feeling like road kill every morning, and my kidney function crawled back up to a higher score. Whew! Talk about dodging a bullet!

There is a lesson here. Take the supplements that your doctors suggest. Check out other supplements before you start taking them, and let your doctors know before you start. I talked over the tart cherry with my internist and rheumatologist before I started, and they caught the kidney function drop pretty quickly because I was going for bloodwork every month. Just because I ran into trouble doesn’t mean that you will. Keep a symptom/food log and monitor like crazy. If your doctors know what you’re up to they can order testing just like mine did. Saved by the blood test!

Knitting — Oh yeah. I also do a daily supplement of knitting. 🙂

If anyone has another great supplement I should check out, let me know!