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!!

A Month of Crutches and Panic Knitting: The Destash Project Update

It really has been a quiet month for me as I’ve been more housebound than usual as I slowly recover from bursitis and tendonitis in one (thank heavens only one!) hip. I’ve been doing my physical therapy, faithfully using my crutch whenever I have to do any prolonged walking (like going to the grocery store), and even started a gym membership so I can start on the reclined bike for the prescribed 5 minute workouts. It helps that it has been cold and I’ve been very motivated to get some projects done. I cleaned up my sewing room and started on some quilts, joined another book club, and began some serious panic knitting to get my yarn destash project back on track after a disastrous September shopping spree.

I entered the month with only 33.5 skeins out of the stash, and my goal is 50 skeins out of the stash before the end of the year. Yikes! I settled into the knitting chair, started an audiobook and began to catch up on knitting projects every afternoon into the evening.

I had two sweaters that were close to completion at the start of the month: the Climb Every Mountain (upper left) and the Koivua (upper right). I finished them up rather quickly (3 skeins used) and then cranked out the Understated sweater (bottom right) in less than two weeks, using up 6 skeins in the effort. Pretty productive!

This week I pulled out several skeins of yarn that were kind of rustic (not superwash), paired then with some mohair that I’ve had stashed forever and make MacKenzie (my very spoiled and demanding cat) a cushy padded sleeping blanket in three days flat while a series of cold fronts dumped a foot of snow and drove temperatures into single digits. It helped that I used big needles and 4 strands of yarn held together for the project.

Another 7.5 skeins of yarn used!!

I also managed to polish off a couple pairs of socks (very simple, mash-up socks that are winter workhorses…) that aren’t all that much to look at, but they used up another couple skeins of yarn.

See what I mean? These are just simple ribbed socks with a sturdy heel.

I have a couple of other projects on the needles at the moment, a cowl and another sweater that will take me through next month, and then before I know it I will be at the end of the year. The destash project kind of hangs over me so I have been knitting steady.

This sweater got started this evening and should really use up most of my Heilo stash. I have 20 skeins of the Heilo, so I have been saving this sweater back as kind of a ringer for the destash project. This is Barn from the book Knits About Winter (Emily Foden). It will be nice and warm for me as winter weather really arrives in the weeks to come.

This evening I totaled up the skeins used this month on my little spreadsheet (yes, I am that big of a geek!) and to my shock the total now is…

52 skeins!!!

I have made it! The destash goal is polished off and I will be way over it when I finish the Barn sweater. Whew! I can now shift attention to getting more sewing done and maybe even will be able to spin a little or do some weaving before Christmas if the hip behaves itself. Maybe bake some cookies. You know, go wild with the relief of having made my goal. Who knew that bursitis, tendonitis, and being on crutches for a few weeks would turn out to be a blessing in disguise? Every cloud does have a silver lining after all!

I will, however, be staying out of the yarn store until the end of the year! No more slips, no more slips, no more slips (chant along with me, people!), no more slips…

May your knitting be good, your books exciting, your chronic illnesses (if you are a member of that club with me) well behaved, and all your New Year’s resolutions met. Have a great weekend, everyone.

Knitting Speed Bump

A few weeks ago I went to see my primary care physician for help with shortness of breath and joint pain. I totally scored! I walked out of there with a tetanus shot (fail), inhaled steroids to control my small airway disease (win) and an anti-inflammatory gel to put on my swollen, painful joints (huge win). What a difference to my life these new medications have made. I can breath! I can walk without pain! I can sleep through the night! This is huge, people. Take that Sjogren’s and scleroderma! Feeling so much better I began to spend more hours up and about, and there was a lot more knitting happening too.

I got some socks finished right up. Here are my project notes.
I made a lot of progress on my Suburban wrap and was lured into knitting more than usual because I just had to get into the next section of the wrap. This is such a fun project with lots of color, texture and lace interest. So addictive. So hard to walk away from…

Oops. Then this happened.

Tendonitis!

One of the problems of getting better is that swelling is going down and the tissue is tightening up on some of my joints. My knees are really tight. My wrists are stiff. When I knit my joints loosen, so I thought I was helping them stay flexible. That is probably true to a certain point, but I guess I now need to be careful to not overdo things. Sigh. I am using the tendons in my left hand the most since I knit continental, and I push the yarn over the needle with my middle finger for each purl stitch. I’m really fast that way, but my tendons have totally rebelled in my left hand and wrist.  To make things worse I can’t take NSAIDS or any other anti-inflammatory drug because of my scleroderma-battered kidneys and stomach. Sigh. My doctor ordered a knitting hiatus.

I want to be a compliant patient, really I do. I read a couple of books, managed to get through a couple of days without knitting, and then I snapped. I must knit!! Want knit now!! Knit, knit, knit. Why go on if I can’t knit? Sniff. Obviously this is totally unacceptable and I am going to figure out how to knit in spite of this bad boy wrist. Really, my left hand is the one having trouble, so maybe I can work around that. I tried to tension the yarn in lots of creative ways before I remembered that lots of people on the planet hold the yarn in their right hands. English knitting. I have never mastered purling English style, but now I’m really motivated!

I was in the last striped section of the wrap when disaster struck; stockinette means I have to purl back every other row. 
I managed to continental knit with the brace on (okay, it is a little loose) and am moving my left hand very little by working slowly and relying on my right hand.
Working very slowly I am also managing to purl back English style. So slow. So awkward. So much safer for babying rebellious tentons.

Last night I finished the stripes and am ready to enter the last section of garter eyelet. Yay. Knit all the way! I can do this! Then it is into the last, ribbed section of the wrap.

Ribbing. That is going to be slow going. I think that I will check out Norwegian purling. Somehow I need to do this without moving my fingers too much. Yay. A new stitch to learn.

I’m on it!

Take that, scleroderma. You are messing with the wrong knitter!!

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.

And a cat!

It is good to have a safe house.

The Yard Destash Resolution: Half Year Report

It’s summer now. I can hardly believe it, things have gone by so quickly. I’m feeling pretty darn good these days and have been steadily working my way through projects around the house and in the yard. It is cutting into the knitting time, but I’m still being pretty productive.

Mr. Demanding is hanging out with me in the yard while I work on projects out there.

Yep. I’m out of the flare! It was only about 2 weeks this time, which is something like a record. I credit my dermatologist and the new antibiotic/anti-inflammatory that she started me on for this. Scleroderma/Sjogren’s/fibromyalgia begone!! Okay, they are still misbehaving on a daily basis, but I have energy, my brain fog is gone, and I am up doing stuff every day. Good days.

Anyway, back to the knitting and the yarn destash project. Back in January I cleaned and organized my stash, gave myself a good mental shake, and resolved to use/remove at least 50 skeins of yarn from the stash. I made great progress over the winter, had a little slip when I went to the Interweave Yarn Fest, and have been catching up from the setback since then. Here’s what I have finished since my last report:

I finished up my V-Neck Boxy sweater by Joji Locatelli. Skeins used: 3
I cranked out this Nordiska sweater by Caitlin Hunter pretty quickly. I love, love, love the colorwork in this one. Skeins used: 3.
I collected the yarns for a pair of No. 5 Union Street socks to match some new shoes. Then I made matching arm warmers. There was still yarn left over, so I made some mitts. I still have some of the silver grey and bits of the others… a cowl? I’m having so much fun! Total skeins used: 2
I’m also cranking out socks with single skeins of yarn that are lurking in the stash. This was a colorway from Chasing Rabbits produced for my LYS called Colorful January. Skeins used: 1

I still have a some projects on the needles: a Suburban Wrap, a What the Fade?! shawl, and another pair of socks. All this knitting brought me up to 25 skeins used this year, so I am right on the pace to meet my resolution.

Tomorrow is my DIL’s birthday so she took a tour through the stash hunting for some gift yarn. Woohoo! She took 5 skeins of yarn that I don’t really love or have a specific project for, and three skeins that will make a fabulous Suburban Wrap of her own; those three are a set that I love and felt a pang in letting go, so they make the gift.

All of this yarn headed out the door with my DIL this afternoon. Yay!! The three on the right will become the Suburban Wrap  and the others were colors that I bought for her in the first place or didn’t love anymore. I’m so happy that they are going to a good home.

There has been a surge in the Destash Resolution project. With the skeins that just left the building I am now up to 33.5 total skeins used/removed this year. Yay! Some of those yarn bins are getting kind of empty and it will be time to reorganize the stash soon. I already have two sweaters and another wrap organized and waiting to move into the knitting workroom, and the goal of 50 skeins is suddenly in reach. Woohoo! Maybe I should up the total?

Best to not get cocky! I’ll just keep knitting on and let’s see what happens.

Happy 4th of July everyone who is celebrating that holiday.

The Scleroderma Chronicles: World Scleroderma Day

Today is World Scleroderma Day. Tonight the Niagara Falls will be illuminated blue and white in recognition of the day. All this month (June) there have been walks and outreach to raise awareness of this disease and to raise money for scleroderma research, and scleroderma patients all over the world have been urged to post pictures of their faces (and smiles) to made this disease more real and relatable.

Rather than flash my smile I have chosen to show this picture of me and MacKenzie, wrapped in handknits, fighting my way through a flare one frozen January. Good times! See the light in the background? It reminds me that every flare comes to an end.

The purpose of this day is to try to raise awareness of an illness that is mostly invisible and relatively unknown.

So what is scleroderma? It is a rare autoimmune disease that is a member of the rheumatic diseases family. The name “scleroderma” means hard (sclero) skin (derma), which is the most visible symptom. Scleroderma is the general name that is applied to a group of connective tissue diseases that may target only the skin, or the skin plus internal organs, or just the internal organs themselves. The words that are used to describe my type of scleroderma (limited systemic sclerosis) are rare, chronic, progressive, disabling, and possibly life threatening. This is a lot to wrap one’s head around, so I’ve decided to break it down.

Rare: Here in the United States the CDC has defined a disease with fewer than 200,000 patients as “rare”. Systemic sclerosis, with about 1-2 diagnosed people for every 100,000 citizens fits the bill. To be rare means your illness struggles for research and treatment funding as the patient population is small and almost no one is personally impacted by the disease in the general population. Hence, Scleroderma Awareness Month and World Scleroderma Day. Thank you, Niagara Falls!!

Auto-Immune Disease: The immune system, designed to protect us from foreign invaders like pathogens,  is attacking some of the components of normal cells in scleroderma patients. The exact components can be identified using the antibodies of scleroderma patients and they are essential proteins found in the nucleus of the cell. My antibodies are attacking a protein found at the kinetochore of dividing chromosomes. I can’t help but wonder what the heck has happened here that I ended up with antibodies like these? I also eventually wondered if my cancer risk is increased since there is something off with this critical structure used in cell division (it is).

Connective Tissue: I used to try to explain this type of tissue to my AP Biology students. Connective tissue… well… it connects. It is what holds your bones together to form the skeleton. It gives support and stretchiness to your skin. It is involved in all the organs of your body, and holds the organs in systems together. It is essential to organize your muscles. In systemic sclerosis, all of this tissue can be involved in an inflammatory attack of the immune system and scarring occurs. Skin gets thick; hands curl, joints won’t bend, smiles  twist and faces harden. Muscles and joints hurt. The smooth muscle in the digestive tract can be so damaged that organs don’t work right. Blood vessels are damaged and spasm, cutting off circulation to extremities and organs. The heart can get scarred. Scarred lungs prevent oxygen passage. Scleroderma, invisible to the outside viewer, can be devastating to the patient.

Vascular tissue damage causes circulation loss to my fingers and toes (Raynaud’s Phenomenon) which I fight by wearing fingerless mitts and wool socks. Works great and the Zen of knitting brings its own benefits.

Chronic: There is no cure, and it never ends. There are, however, treatments for individual impacted organs that are really helpful.

Progessive: Damage accumulates over time and conditions worsen. My doctors are monitoring my kidneys, heart, lungs and GI system. So far I am doing pretty well, but my GI tract is taking the most damage.

Disabling: Yep. It is getting really hard to walk, and I just don’t fit all that well into the world anymore since my diet is very restrictive, air conditioning isn’t my friend, and sunshine makes me go into a flare. Right now I don’t need supplemental oxygen, but if that comes back it will further restrict my independence.

Life-threatening: It took me months to think this one through, but eventually I did google “life expectancy of systemic sclerosis” and discovered that for me, with my treatment plan and risk factors, survival rate is about 75% for 10 years after diagnosis. Overall the death rate of scleroderma is 50%. Oh. Now I know. Who wants to live forever?

This week I wrote a letter to my congressman asking him to sponsor a bill that would fund research into fibrotic diseases like scleroderma and cystic fibrosis. I haven’t heard back, but maybe if he has heard of one of these diseases or knows someone impacted by scleroderma he will do it.

That’s why we do World Scleroderma Day.